But when you look closely at where cancer research is strongest, a pattern emerges that is hard to ignore. The states leading the country in research are not the states where Black Americans live in the greatest numbers. That gap shapes who benefits from the country’s most advanced cancer breakthroughs.

The States Winning the Research Race

SmileHub’s 2026 ranking of the best states for cancer research highlights the places with the deepest research ecosystems. These states have the most researchers per capita, the strongest funding from the National Institutes of Health (NIH) and the American Cancer Society (ACS), the highest clinical trial output, and the most robust cancer care infrastructure.

The top 10 states for cancer research are:

1. Massachusetts
2. New York
3. California
4. Pennsylvania
5. Colorado
6. Maryland
7. Oregon
8. Virginia
9. Connecticut
10. Minnesota

The ranking is built on thirteen metrics, including NIH grant funding, ACS funding, clinical trial activity, and hospital quality data from U.S. News & World Report’s Best Hospitals for Cancer.

Massachusetts leads the list with top scores in both research funding and research output. New York ranks first in health care infrastructure. California sits in the top three across funding, output, and hospital quality. These states have long histories of academic investment, major research universities, and strong philanthropic networks.

But this map tells only one story. The real story is about who lives where.

Where Black America Actually Lives

Neilsberg’s 2025 analysis of U.S. Census Bureau American Community Survey (ACS) data shows a clear picture of where Black Americans live today. The five states with the largest Black populations are Texas, Florida, Georgia, New York, and California. These states anchor the modern Black population map. Pew Research Center reports that more than half of all Black Americans, about 56 percent, live in the South, which underscores how deeply rooted the population is in this region.

According to Neilsberg’s Black population ranking, Texas has 4,146,550 Black residents, which is 11.66 percent of the state’s population. Florida has 3,900,650, or 15.24 percent. Georgia has 3,648,016, representing 31.27 percent of the state. New York has 3,519,047, and California has 2,841,399.

Together, these five states account for more than 38 percent of all Black Americans.

A Map That Leaves Too Many Behind

The states with the largest Black populations rarely appear near the top of cancer research rankings. Georgia ranks thirty-eight. Florida ranks thirty. Texas ranks twenty-two. Louisiana, Mississippi, Alabama, and South Carolina all fall in the bottom fifteen, even though they are home to some of the country’s most concentrated Black communities.

That gap has real consequences. Black Americans continue to face the highest cancer mortality rates in the United States, according to the American Cancer Society. When the strongest research ecosystems are located far from the communities carrying the highest burden, access to clinical trials, specialty care, and advanced treatment becomes uneven by design.

When Distance Becomes a Barrier to Survival

Cancer research is tied to place. Clinical trials usually require in person visits. High quality cancer hospitals cluster in specific regions. Funding from the National Institutes of Health flows to institutions with long established research capacity. Insurance coverage varies by state. These factors shape who gets early detection, who gets advanced treatment, and who gets to participate in the studies that guide national standards of care.

When research is concentrated in the Northeast and West, and the highest burden communities are concentrated in the South, the result is a structural divide.

Black Americans are less likely to live near cancer centers designated by the National Cancer Institute (NCI). They are less likely to be offered clinical trial participation. They are less likely to receive proper care. These patterns appear consistently in national cancer disparities reports and peer-reviewed research.

SmileHub did not create these disparities. But when its data is read through a different lens, the gaps reveal themselves with uncomfortable clarity.

What Real Investment Would Look Like

Imagine a South with more NCI designated cancer centers, stronger clinical trial networks, and research universities that anchor long-term investment. A South with increased NIH and ACS funding, deeper community-based research partnerships, better insurance coverage, and high-quality cancer hospitals within reach.

Imagine a research landscape that follows need instead of legacy.

The data points toward a future where investment is measured not only by scientific output, but by who can reach the front door of a research center. A future where breakthroughs are shaped by the communities that carry the highest burden. A future where geography is not destiny.

The Question We Cannot Ignore

The United States is investing billions to end cancer. But unless research infrastructure expands into the states where Black Americans actually live, the benefits of that investment will remain uneven. The communities with the highest cancer burden will continue to be left behind.

The country has the science, the momentum, and the resources to change the story of cancer. What remains uncertain is whether that progress will reach the communities that have carried the heaviest burden for the longest time.

Resources:

Cancer statistics, 2026 – Siegel – 2026 – CA: A Cancer Journal for Clinicians – Wiley Online Library

Best States for Cancer Research in 2026

Best Hospitals for Cancer in the U.S. | Rankings & Ratings

States in United States ranked by Black population – 2025 | Neilsberg

Facts About the U.S. Black Population | Pew Research Center

Cancer statistics for African American and Black people, 2025 – Saka – 2025 – CA: A Cancer Journal for Clinicians – Wiley Online Library

The post Cancer Research Isn’t Reaching Black America appeared first on Black Health Matters.

•  Red blood cells, which carry oxygen throughout your body
• White blood cells, which fight infection
• Platelets, which control bleeding, are regularly generated in a healthy body to replace old, dying ones. The excessive production of white blood cells in the bone marrow leads to blood cancers.

There Are Different Types of Blood Cancer

Leukemia, lymphoma, and Myeloma are some of the most common types of blood cancer.

Leukemia

• Leukemia is the most common blood cancer in the U.S. and the most common form of childhood cancer. There are many types of leukemia, but in general, it occurs in the bone marrow when abnormal white blood cells are produced at an abnormally high rate. This interferes with the bone marrow’s ability to produce red blood cells and platelets.

Subcategories of leukemia:

• Acute erythroid leukemia, Acute lymphoblastic leukemia (ALL), Acute megakaryoblastic leukemia, Acute myeloid leukemia (AML), Acute promyelocytic leukemia (APL), Chronic lymphocytic leukemia (CLL), Chronic myeloid leukemia (CML), Chronic myelomonocytic leukemia (CMML), Childhood leukemia, Hairy cell leukemia (HCL), Large granular lymphocytic leukemia (LGLL), Mast cell leukaemia (MCL).

Lymphoma

•  Lymphoma is a type of cancer that affects the lymphatic system, which plays a crucial role in the body’s immune response to infection. Lymphoma cells can form tumors in areas such as your lymph nodes. There are two primary forms: Hodgkin and non-Hodgkin lymphoma.

Subcategories of lymphoma

• Burkitt lymphoma, Diffuse large B-cell lymphoma (DLBCL), Double-hit lymphoma Follicular lymphoma, Grey zone lymphoma, High-grade B-cell lymphoma not otherwise specified (NOS), Hodgkin lymphoma, MALT lymphoma, Mantle cell lymphoma, Nodal marginal zone lymphoma, Nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL), Non-Hodgkin lymphoma, Peripheral T cell lymphoma (PTCL), Primary central nervous system lymphoma (PCNSL), Skin lymphoma (cutaneous lymphoma), Small lymphocytic lymphoma (SLL), Splenic marginal zone lymphoma, Triple-hit lymphoma, Waldenström macroglobulinemia (WM).

Myeloma

• Myeloma originates in the bone marrow and affects white blood cells called plasma cells, a type of white blood cell that plays a crucial role in the immune system by producing antibodies to combat germs. Multiple Myeloma is the most common subtype of plasma cell neoplasms. Symptoms usually don’t appear until the cancer is widespread and advanced. Rarer forms of blood cancer include:
  • Myeloproliferative neoplasms (MPN). In this type of cancer, the bone marrow produces an excessive number of white blood cells, red blood cells, or platelets.
  • Myelodysplastic syndromes (MDS). With MDS, your bone marrow makes abnormal blood cells. Sometimes, blood cells are abnormal because they fail to develop fully. Immature cells are called blasts.

• Non-cancerous blood conditions: MGUS

Risk Factors

For Blood Cancer

• Certain factors may play a role in increasing your blood cancer risk, including:
• Age. Your risk of developing a condition increases as you age.
•  Sex. Blood cancers are more common in males.
• Smoking. A smoking history or exposure to secondhand smoke may increase your risk.
• Exposure to toxic chemicals. Long-term exposure to benzene and formaldehyde can increase your risk of specific health issues. You’re more likely to encounter them if you work in an industry like manufacturing.
• Previous cancer treatment. Previous chemotherapy or radiation therapy may increase your risk of developing blood cancer.
• Biological family history. Some types of blood cancers may run in families. But most people who receive a diagnosis don’t have a family member with blood cancer.
•  Several autoimmune diseases, genetic disorders, and conditions that cause long-term inflammation are associated with increased blood cancer risk. Blood cancers aren’t avoidable.

But even someone with a clean bill of health can develop blood cancer. However, you can lower your risk by avoiding certain risk factors, such as smoking.

Additional Risk Factors for Leukemia, Lymphoma, and Myeloma

Leukemia: Advancing age, being male, family history of blood cancer, smoking, genetic disorders like Down syndrome, Chronic exposure to high doses of radiation or industrial chemicals, and a History of chemotherapy or radiation cancer treatment.

Lymphoma: advancing age, although people between the ages of 15 and 35 are at risk for Hodgkin lymphoma; being male; a family history of blood cancer; and a History of infection and disease. For example, the Epstein-Barr virus, which causes mono, can increase the risk for Hodgkin and autoimmune disorders, such as rheumatoid arthritis, a weakened immune system, Chronic exposure to certain industrial chemicals, and radiation.

Myeloma: Advancing age, being male, being African American, Family history of blood cancer or other plasma cell diseases, such as monoclonal gammopathy of undetermined significance (MGUS) or solitary plasmacytoma, being overweight or obese, and Chronic exposure to radiation and chemicals.

Symptoms

People with blood cancer may experience a range of symptoms, including:

• Fatigue
• Shortness of breath
• Swollen lymph nodes
• Frequent infections

Other symptoms include: Bone pain, Drenching night sweats, Enlarged liver or spleen, Joint pain, Persistent fever, Unexplained weight loss, Unusual bruising or bleeding (warning signs include tiny red skin spots or purplish skin patches), rash, or itchy skin that is unexplained. Learn more about the symptoms of blood cancer.

Bruises: On lighter skin, bruises start red and gradually darken. However, on darker skin, bruises may be hard to see at first but become darker than the surrounding skin over time.

Rashes: They often appear as clusters of tiny spots or larger blotches. On lighter skin, rashes look red or purple. On Black and brown skin, they appear as dark purple or darker spots. These spots don’t fade when pressed.

Paleness (A Loss of Pallor): Easier to spot in light skin as unusual paleness. In individuals with Black or brown skin, pallor may appear grayish or manifest as paler palms, lips, gums, tongue, or nail beds. For all skin types, pale inner eyelids can also be a sign.

How is Blood Cancer Diagnosed?

• Leukemia: Your doctor will order a complete blood count (CBC) test, which can help identify abnormal levels of white blood cells in relation to red blood cells and platelets.
• Lymphoma: Your doctor will need to perform a biopsy, which involves removing a small portion of tissue for examination under a microscope. In some cases, your doctor may also order an X-ray, CT, or PET scan to detect swollen lymph nodes.
• Myeloma: Your doctor will order a CBC, as well as other blood or urine tests, to detect chemicals or proteins produced as a result of myeloma development. In some cases, bone marrow biopsy, X-ray, MRI, PET, and CT scans can be used to confirm the presence and extent of the spread.

How is Blood Cancer Treated?

Common treatments for blood cancer include:

• Chemotherapy. Chemotherapy is a primary treatment for blood cancer. It kills cancer cells to either slow down the disease’s progress or eliminate the cancer. Healthcare providers use various types of chemotherapy drugs to treat different blood cancers.
•  Radiation therapy. This treatment uses radiation to damage the DNA in abnormal cells, preventing them from replicating. Providers may use radiation to ease symptoms (palliative care). They often combine radiation therapy with other forms of treatment.
•  Immunotherapy. This treatment improves your immune system’s ability to fight cancer. Some of the most commonly used immunotherapies for blood cancer are monoclonal antibodies and CAR T-cell therapy.
• Targeted therapy. These treatments target weaknesses in cancer cells related to abnormal genetic mutations.
• Autologous stem cell transplant. Providers can collect bone marrow stem cells from your body before giving you high doses of chemotherapy. Once chemotherapy kills the cancer cells, they’ll give your healthy stem cells back to you. They’ll develop into healthy blood cells.
• Allogeneic stem cell transplant. Sometimes, damaged bone marrow needs to be replaced with healthy bone marrow. Providers identify a suitable bone marrow donor and use the donor’s cells to replace your damaged ones.
•  Stem cell transplantation: Healthy stem cells can be infused into your body to help resume healthy blood production following therapy to destroy malignant blood cells.

Resources

Blood Cancer United.org

Yale Medicine: Blood Cancers

Summa Health: Leukemia Risk Factors

Blood Cancer UK symptoms and signs

International Myeloma Foundation

Race and Ethnicity Risk Factors for Leukemia

Cleveland Clinic

The post Understanding Blood Cancers appeared first on Black Health Matters.

The research is still unfolding, but here’s what we know so far about how CAR-T therapy is being used to treat ovarian cancer.

What Makes Ovarian Cancer So Hard to Treat

According to the National Cancer Institute’s SEER Program, an estimated 20,890 women in the United States will be diagnosed with ovarian cancer in 2025. About 12,730 are expected to die from the disease. The five-year relative survival rate is 51.6 percent, but that number drops significantly for Black women, who face unique barriers to early detection, timely treatment, and access to clinical trials.

As Dr. Oliver Dorigo, director of gynecologic oncology at Stanford Medicine, explained in a Stanford Cancer Institute report, “Ovarian cancer remains a very difficult disease to treat, especially when it recurs. Many patients are in dire need of better therapies.”

What Is CAR-T Cell Therapy?

CAR-T stands for chimeric antigen receptor T-cell therapy. It’s a form of immunotherapy that modifies a patient’s own T cells, white blood cells that help fight disease, to better recognize and destroy cancer cells. Researchers collect T cells from the blood, reprogram them in a lab, and return them to the body, where they act as targeted cancer hunters.

This therapy has shown remarkable success in blood cancers like leukemia. Now, researchers are adapting CAR-T therapy for solid tumors, including ovarian cancer.

Inside the Promise of CAR-T Therapy

Stanford researchers, including Dr. Oliver Dorigo and Dr. Crystal Mackall, a leading expert in cell therapy, are testing CAR-T cells that target a protein called B7-H3, which is highly expressed in ovarian tumors. Their phase 1 trial, launched in late 2024, is exploring both intravenous and direct abdominal delivery. That abdominal approach could offer more precise targeting, since ovarian cancer often remains confined to the abdomen.

Early Results and What Comes Next

Initial findings from the trial are encouraging. Researchers saw early promise and learned from side effects in the first six patients, helping to refine the therapy.

Researchers are also exploring ways to improve CAR-T therapy for solid tumors, including ovarian cancer. That includes pairing it with other treatments and finding ways to help immune cells reach tumors more effectively.

What This Means for Black Women

While these therapies are still in early stages, they reflect a shift toward more personalized, immune-based treatment. Approaches like CAR-T could eventually offer longer-lasting results with fewer side effects.

But access matters. For Black women, who are often underrepresented in clinical trials and underserved in cancer care, these innovations won’t mean much unless they’re available to everyone. A recently updated PARP inhibitors trial, which tested a targeted therapy for ovarian cancer, included only 1.6 percent Black participants, according to data from ClinicalTrials.gov. Without diverse participation, researchers can’t fully understand how well these treatments work for the people who may need them most.

Breakthroughs Without Representation

Studies show that Black women are 25 percent less likely than white women to receive ovarian cancer treatment that follows national guidelines, according to a meta-analysis published by Oxford University Press.

Even when cancer stage and treatment type are similar, Black women often face worse outcomes. Many Black women experience resistance to chemotherapy and recurrence sooner than other groups.

These gaps in care aren’t explained by biology alone. Many Black women are diagnosed with high-grade serous tumors, the most aggressive form of ovarian cancer. Yet access to genetic testing, personalized treatment plans, and clinical trials remains limited. Some providers delay referrals or underestimate symptoms. Others fail to explain options in ways that feel trustworthy or culturally relevant.

As therapies advance, advocacy must ensure that Black women are included in research. They must be informed about emerging treatments and supported through care that respects their experiences and meets their needs.

And CAR-T cell therapy may be just that, a new beginning in a story that needs change.

Resources:

Ovarian Cancer — Cancer Stat Facts

Using CAR-T cells to treat ovarian cancer | Stanford Cancer Institute

Study Results | NCT02655016 | A Study of Niraparib (GSK3985771) Maintenance Treatment in Participants With Advanced Ovarian Cancer Following Response on Front-Line Platinum-Based Chemotherapy | ClinicalTrials.gov

Race, Socioeconomic Status, and Health-Care Access Disparities in Ovarian Cancer Treatment and Mortality: Systematic Review and Meta-Analysis | JNCI Cancer Spectrum | Oxford Academic

The post CAR-T Therapy Is Changing Ovarian Cancer Care appeared first on Black Health Matters.

The temporary policies that allowed broad telehealth access and coverage across state lines were set to expire in 2024, with an extension of some services through March of this year. The purpose of this paper is to advocate for the expanded use of telehealth beyond 2025 in the management of blood cancer. Advocates warn that this critical resource may soon disappear unless action is taken.

Why This Matters

“Telehealth wasn’t just about convenience. It lifted real burdens for people who couldn’t easily get to a doctor’s office,” said study co-author Deanna Darlington, a health equity expert and advocate. “It became a lifeline. Taking it away now would only further restrict access to care.” Blood cancers like leukemia, lymphoma, and myeloma disproportionately affect Black communities. Black Americans are twice as likely to develop and experience poorer outcomes from multiple myeloma specifically. Telemedicine removes two big barriers: travel distance and time out of work or caregiving.

The benefits of telehealth are clear, but the stakes are high for Black Americans. Multiple myeloma, a cancer of plasma cells, disproportionately affects individuals of African ancestry, who face a significantly higher risk of developing the disease compared to those of European descent.

“This increased risk is thought to be influenced by a combination of genetic and environmental factors,” explained co-author Mimi Choon Quinones. “Research suggests that genetic differences, particularly in white blood cell traits, and the prevalence of conditions like MGUS, may play a role. Obesity and chronic infections, which are more common in some African populations, may also contribute to the higher incidence and mortality rates.”

While the science is still evolving, Choon-Quinones emphasized that telemedicine offers a critical path forward, not just for treatment, but also for early detection. “We see telehealth as a tool to help identify who may be at risk, even before a diagnosis, and especially for those who don’t live near a specialist,” she said.

How Telehealth Works

The study team conducted a combination of scientific review and direct engagement with blood cancer advocates, reflecting real-world experiences.

They found that telemedicine:

• Helped patients stick to their treatment plans
• Improved quality of life and emotional well-being
• Reduced time and financial burdens from traveling long distances
• Allowed earlier access to expert consultations, which sometimes occurred across state lines
• Was well accepted by clinicians, especially for follow-up visits and care management

Darlington points out that many of the patients most impacted by blood cancers, especially Black patients, are also the most likely to face access barriers. “You might live in Kansas, and the expert is in New York. Before COVID, state laws prevented you from doing a virtual consultation across state lines, but during the pandemic, those barriers came down. People were finally able to talk to the experts they needed,” she said. “Think about how many people don’t have access to specialists. This gave everyday people that access.”

Times Are Changing

“Right now, there’s no permanent provision to keep telehealth reimbursed,” said Darlington. “If we lose this, we lose the progress we’ve made. This is especially damaging to communities that are already underserved.”

Choon-Quinones agrees and emphasizes that this issue should be a community-wide call to action. “The focus needs to be on how we, as a community, can leverage the regulations that still exist. If they expire, we need to rally, go to Capitol Hill, and raise a strong voice,” she said. “We’ve already engaged with the chairman of the health committee once to extend coverage and succeeded. But I don’t know that we’ll be able to count on this administration to do it again.”

The Passion Behind the Paper

Choon-Quinones joined this project while working on her systematic review of blood cancers, as other co-authors had already spent much time collaborating prior. But she quickly realized that science alone wasn’t enough. By collaborating with advocates, she created a combined evidence base that is both scientifically informed and community-driven.

“I’m passionate about this because it could make an enormous difference to the families and communities that blood cancers like multiple myeloma impact,” she said. “This is a real chance to reduce disparities.”

Darlington echoes that sentiment and urges people to think about the daily realities patients face. “When people are working full-time, caring for family, and managing other chronic conditions, the ability to have a telehealth visit can mean the difference between getting care and going without,” she said. “This is especially true in communities of color, where people are often further away from specialized care, less aware of available resources, and facing more barriers to better health.”

What’s Next?

Telehealth expansion was born out of a nationwide pandemic. It has opened doors that have long been shut for many people.

Telemedicine shouldn’t just be a pandemic-era convenience. It’s a chance to redefine equity in blood cancer care. Initial evidence suggests promise in improving outcomes, reducing costs, and overcoming longstanding racial disparities. For Black Americans, who face higher disease rates and access challenges, virtual care opens a path toward more timely and patient-centered care.

Telemedicine is more than a temporary fix. It’s a vital tool for closing healthcare gaps. For Black Americans living with blood cancers, it can mean earlier diagnoses, easier access to experts, and fewer financial and logistical hurdles. The question now is not whether telehealth works, but what we can do to protect our access to it.

References

 Mikhael, J., Darlington, D., Howell, B., Hydren, J., Hernandez, T., Werner, S., … Choon-Quinones, M. (2025). The benefits of telehealth in promoting equity in blood cancer care – results of a multi-stakeholder forum and systematic literature review. Journal of Medical Economics, 28(1), 788–802.

American Cancer Society. What Is Multiple Myeloma?

The post How Telehealth Can Help Us Fight Blood Cancer appeared first on Black Health Matters.

BHM: What motivated you to start Chronic Fitness and focus on helping individuals with chronic conditions?

Yolanda Sarrabo:  I am also part of the community I serve. I was diagnosed with multiple myeloma many moons ago. During treatment and everything that came with it, I wanted to continue exercising.

After interviewing a few personal trainers, I realized it just wasn’t a good fit. Even though there are trainers who target specific communities, I felt my needs weren’t being met. So, I thought about it, prayed on it, and realized there was a niche for special populations. From there, I decided to start my own initiative, Chronic Fitness was born to fill the gap for people like me.

BHM: How does fitness help individuals living with chronic conditions improve their physical and mental health?

Yolanda Sarrabo: Fitness, along with proper nutrition, is essential for making lifestyle changes. Treatment, including medications, can alter one’s daily life, and people often forget about the nutritional and physical aspects.

Nowadays, you might hear doctors recommending exercise alongside treatment. For something like hypertension, a good doctor will include exercise in the plan, not just medication. Years ago, it was all about the meds, but now it’s more holistic, with physical, mental, and nutritional health all working together.

BHM: What are the biggest challenges people face when starting or maintaining a wellness routine?

Yolanda Sarrabo: One major barrier is financial concern. People often ask, “Can I afford this?” You might think, “I can’t afford a trainer, so I won’t exercise,” but you don’t need a trainer to stay active. You can walk, follow exercise videos on YouTube, or try activities like Zumba or cardio. There are countless ways to move your body that don’t require spending a lot of money.

BHM: You’ve spoken about advocating for one’s health. Can you elaborate on what patients should do to take control, particularly in the Black community?

Yolanda Sarrabo: I really push this concept of participatory medicine. It’s about having transparent conversations with your doctor. If you’re diagnosed with something, whether it’s cancer, hypertension, or diabetes, don’t stop at the diagnosis.

At your next visit, ask questions such as, “What does this mean? How does it change my daily life? Should I adjust my diet or exercise routine?”

This is a partnership; you’re not just a passive patient. You’re an active participant. If your doctor isn’t answering your questions, that’s your sign to seek a second opinion.
In the Black community, trust in the healthcare system can be tricky, especially for older generations who’ve faced bad experiences. But you need to have open conversations with your healthcare provider and collaborate on your survivorship.

BHM: How can people set realistic fitness goals and maintain discipline when they’re feeling overwhelmed or impatient with results?

Yolanda Sarrabo: Write it down; seeing your goals on paper makes a huge difference. Keep a food diary and track your body measurements. This helps you understand where changes need to be made and whether your habits align with your goals. Start small, like losing 2 to 5 pounds instead of aiming for 30 in two months. Gradual progress builds consistency, and as you grow stronger, you’ll naturally push for more challenges.

BHM: If you had one piece of advice for someone feeling overwhelmed by their health challenges, what would it be?

Yolanda Sarrabo: Embrace your new normalcy. Things are different now, whether good or bad, and you need to embrace where you are while staying open to change. Many people feel they’re not healthy because of their condition, and that mindset can block progress. But there’s room to make changes.

Life doesn’t stop with a diagnosis; there’s always room for improvement. Even I had hypertension. I did what I needed to do, took the meds, and all of that. Then, my numbers went down. I was able to get off the meds.

I think a lot of people just get stuck on how life stops. Based on what they are being told, they start to think there’s no wiggle room to make improvements, but there is. Embrace it all. This is your new normalcy, and within your new normalcy, there’s room to change.

Kickstart Your 30-Day Fitness Routine.

Yolanda recommends a simple, effective fitness plan to help you build consistency. These low-impact routines are great for all fitness levels:

Low-Impact Cardio (Monday, Wednesday, Friday):

Option 1: Modified jumping jacks, windmills, bicep jabs (10 reps, two sets)
Option 2: Sumo squats, side-to-side twists, forward bends (10 reps, two sets)
Option 3: Squats, squat with overhead reach, wall push-ups (10 reps, two sets)

Upper Body Routine (Tuesday, Thursday):

Option 1: Wall push-ups, crossbody punches, wood chops (10 reps, two sets)
Option 2: Seated shoulder press, arm circles, bicep curls (10 reps, two sets; with or without weights)

Through her work with Chronic Fitness, Yolanda Sarrabo has identified a need for more motivation around exercise. Take inspiration from her example; you can take charge of your journey with small steps, consistency, and the right mindset. And don’t let chronic conditions get in the way.

Be sure to check with your HCP before beginning any exercise program. 

The post Motivated to Move: Exercising With a Chronic Condition appeared first on Black Health Matters.

Dr. Amany Keruakous, MD, shared vital information about multiple myeloma with the audience at the Black Health Matters 2025 Health Summit & Expo.

Multiple myeloma disproportionately impacts the Black community in major ways. According to the Journal of Blood Advances, “AAs have a higher risk of MM and the precursor condition monoclonal gammopathy of undetermined significance compared with White individuals.”

Multiple myeloma is a chronic disease but is not a hopeless one. “There are so many treatment options available,” said Keruakous. “The 10-year survival has significantly gotten better than what it was 20 years ago.”

Keruakous explained that the jarring statistics regarding adverse outcomes of Black patients with multiple myeloma could be a result of improper care and not inherently low chances of successfully fighting the condition. “If it’s treated properly, they do better,” she said. “Unfortunately, because of lack of resources for African-American patients. The survival rates for African-Americans, they have not kept pace.”

Access to care makes a significant difference in the outcome of multiple myeloma cases, according to research done by Keruakous. “Data shows that under equal opportunity treatment settings. The African-American patients, they actually do better than caucasian when they’re treated properly,” she said.

Proper treatments can not be developed and implemented without the type of information obtained from clinical trials. Trials that do not include Black patients prevent Black people from being fully involved in medical innovations.

Bristol Meyers Squibb and SparkCures have partnered on a screening tool that can help healthcare providers determine whether their patients are available to participate in studies.

Keruakous shared information about her research on fighting multiple myeloma, including a cooperative group study. “These two studies actually have a goal of enrolling African-American patients specifically,” she said. She was inspired to diversify participation by the facts surrounding the outcomes in the Black community. “The prognosis is poor if they’re not treated properly,” Keruakous added.

What Do You Need To Know About Multiple Myeloma?

Treatments for Multiple Myeloma are Advancing.

“There have been remarkable improvements in myeloma, research, and treatment, and myeloma will continue to improve,” said Keruakous.

She explained that structures are in place to keep these pricey treatments accessible to those fighting multiple myeloma. “The treatments are extremely expensive, but it is all covered by your insurance, and even if it’s not covered by your insurance, all of the drug companies, they actually have a financial assistance program,” said Keruakous. “I have never had any problems giving the care that we need to our patients, and even if the drug is expensive for the patient, we ask for financial assistance programs to help get the right treatment to the patients.”

There is No Stage Four

Popular culture frequently reinforces the idea that cancer comes in four stages, but Keruakous clarified that does not apply to every type of cancer. “Myeloma has only three stages,” she explained. “Three is the worst. But even with stage three, the treatments are very promising.”

Understanding the details of multiple myeloma’s progression can empower patients to speak confidently with their doctors.

Multiple Myeloma Can Look Like Other Things

Multiple myeloma can be deceptive, according to Keruakous. “Symptoms of myeloma mimic many other conditions,” she said. She cited kidney issues, bone lesions, and anemia as some of the symptoms that could be confused by patients unaware that they are dealing with multiple myeloma.

“60% of people present with anemia, which comes with weakness, fatigue, losing energy, and recurrent infections,” she said.

Screenings Save Lives

Keruakous advised those in the room to take action to mitigate their risk of being diagnosed with multiple myeloma suddenly by ensuring that they are being screened appropriately. The presence of a family member facing multiple myeloma can be a sign to move up one’s screening. She explained that multiple myeloma runs in families due to its pervasiveness. “There is really no conclusive evidence for myeloma being an inherited disease,” she said. “It actually runs in the family just because it’s more common in this race.”

“If you have any relative who has multiple myeloma, go ask your doctor to be screened,” she said passionately. “Just tell your doctor I need to be checked for multiple myeloma.”

Age At Diagnosis Can Impact Outcomes

Keruakous revealed that the majority of diagnoses occur in older patients.

According to the Journal of Blood Advances, “Age at onset affects prognosis for patients with MM, with younger patients generally having better outcomes compared with older patients.”

The post Rewind the Session: Multiple Myeloma in the Community appeared first on Black Health Matters.

What Are Precursor Conditions?

Precursor conditions to multiple myeloma are early, often symptom-free stages of the disease where abnormal plasma cells (crucial to your immune system) are present but haven’t yet caused significant damage. The two main types are:

Monoclonal Gammopathy of Undetermined Significance (MGUS)

This is the earliest stage, where abnormal plasma cells produce M-protein, but no symptoms exist. Most people with MGUS never develop multiple myeloma, but some do, which is why doctors monitor it closely.

Smoldering Multiple Myeloma (SMM)

This is a more advanced precursor stage with higher abnormal plasma cells and M-protein levels. People with smoldering myeloma are at a greater risk of progressing to active multiple myeloma and need regular follow-ups.

Who’s Most at Risk?

Anyone can develop MGUS or smoldering myeloma, but some groups are at higher risk than others.

One key fact: Black Americans are two to three times more likely to be diagnosed with MGUS and multiple myeloma than white Americans.

Researchers are still working to understand why, but it may be due to genetic factors, environmental influences, or disparities in healthcare access. Additionally, precursor conditions are more common as people age.

MGUS is typically found in individuals over 50; the risk increases with each passing decade.

Do Precursor Conditions Cause Symptoms?

Most people with MGUS or smoldering myeloma feel perfectly fine, which is why these conditions are often discovered by accident during routine blood tests. However, some people with smoldering myeloma may experience mild symptoms, such as fatigue or bone pain. These should be discussed with your doctor immediately.

If you have been diagnosed with MGUS but have symptoms like neuropathy or renal failure, you should also visit a myeloma specialist. They can help you make sense of your case and try to help appropriately alleviate symptoms.

How Are Precursor Conditions Diagnosed?

Doctors use a combination of tests to diagnose precursor conditions:

• Blood tests to check for M-protein and other markers
•  Urine tests to detect abnormal proteins
• Bone marrow biopsy to assess the number of abnormal plasma cells
• Imaging tests (like MRI or PET scans) to check for early bone damage

What Happens After Diagnosis?

If you’re diagnosed with MGUS or smoldering myeloma, your doctor will likely recommend regular check-ups instead of immediate treatment. The goal is to monitor your condition closely and catch any changes early. For some patients with high-risk smoldering myeloma (HRSMM)—meaning they have a greater chance of progressing to multiple myeloma—early treatment or participation in a clinical trial may be an option. Ongoing research is helping doctors determine the best ways to delay or prevent its progression.

What Can You Do?

Figure out if you’re at risk. If you have a first-degree relative—a parent, child, or sibling—who has been diagnosed with myeloma or a related blood disorder, you may be at a higher risk of developing it. Taking proactive steps can help with early detection and better outcomes. Consider enrolling in the PROMISE study, which offers free prescreening for individuals at increased risk.

Talk to your doctor about routine blood tests to monitor for early signs, stay informed about risk factors, and prioritize a healthy lifestyle to support overall well-being. Knowledge is power—being proactive could make all the difference in your health journey. If you’you’ven diagnosed with a precursor condition, there are steps you can take to stay on top of your health:

•  Follow up with your doctor regularly to track any changes in your condition.
• Maintain a healthy lifestyle, including eating a balanced diet, staying active, and managing stress.
• Learn about clinical trials, especially if you have high-risk smoldering myeloma.
•  Advocate for yourself, particularly as a Black American, as you are part of a higher-risk group. Make sure you have access to the latest information and quality care.

Visit Black Myeloma Health for more resources.

Looking Ahead

A diagnosis of MGUS or smoldering myeloma does not mean you will develop multiple myeloma. Many people live for years without any progression. However, staying informed, keeping up with regular monitoring, and working with a multiple myeloma specialist can help you confidently navigate your condition.

About HealthTree Foundation

HealthTree is a global nonprofit organization using innovation to save lives. Our cutting-edge technology unites patients and researchers to help people with blood cancer live better and longer and leads the search for a cure. Learn more at healthree.org.

Sources:

• HealthTree- How Many Different Types of Multiple Myeloma?
• Multiple myeloma: 2020 update on diagnosis, risk‐stratification and management
• Racial disparities in the prevalence of monoclonal gammopathies: a population-based study of 12,482 persons from the National Health and Nutritional Examination Survey
• Prevalence of monoclonal gammopathy of undetermined significance
• Monoclonal Gammopathy of Renal Significance | New England Journal of Medicine
• Monoclonal gammopathies of clinical significance | Hematology, ASH Education Program

The post Understanding Precursor Conditions to Multiple Myeloma appeared first on Black Health Matters.

Led by Urvi A. Shah, MD, a myeloma specialist at MSK, the NUTRIVENTION clinical trial enrolled 20 participants diagnosed with precancerous blood disorders. Notably, forty-three percent of those enrolled in the trial were Black, Hispanic, or of mixed race, reflecting the study’s commitment to diversity. Additionally, 60 % of the participants had monoclonal gammopathy of undetermined significance (MGUS), and the other 40 % had smoldering myeloma (SMM). Both conditions are known precursors to multiple myeloma. Obese individuals with an elevated body mass index (BMI) are also at significantly higher risk of progression.

Participants in the trial followed a 12-week regimen of high-fiber, plant-based meals and engaged in 24 weeks of health coaching. The results were remarkable: two participants who had been experiencing disease progression before the study showed significant improvement in their disease trajectories.

None of the participants progressed to multiple myeloma during the one-year follow-up period.

Empowering Patients with Knowledge and Nutrition

“This study showcases the power of nutrition—specifically a high-fiber, plant-based diet—and unlocks a better understanding of how it can lead to improvements in the microbiome and metabolism to build a stronger immune system,” said Dr. Shah. “These findings further support how we as physicians can empower patients, especially those with precancerous conditions, with knowledge on reducing their cancer risk through dietary changes.”

Multiple myeloma is the second most common blood cancer (leukemia is first) and typically develops from precursor conditions such as MGUS and smoldering myeloma.

Research has shown that individuals with poor diets and a low intake of plant-based foods are at greater risk of developing multiple myeloma.

Unique Challenges for African Americans

Unfortunately, “African Americans face a disproportionate burden when it comes to multiple myeloma. Dr. Shah says, “There may be multiple mechanisms at play, including genetics, immune dysregulation, socioeconomic factors, dietary factors, and metabolic disorders like obesity and diabetes.”

Obesity, diabetes, and poor diets are more prevalent in Black communities compared to white populations, contributing to increased risks. Research by Dr. Shah indicates that 10-19 percent of multiple myeloma cases in the United States are attributable to excess body mass index (BMI).

Elevated BMI alone accounts for 2.1-3.3 percent more multiple myeloma cases among non-Hispanic Black Americans than non-Hispanic white Americans.

The NUTRIVENTION trial was designed to explore whether a dietary intervention could alter these odds. Those enrolled were encouraged to eat as much as they wanted, as long as their meals consisted of whole, plant-based foods such as fruits, vegetables, nuts, seeds, whole grains, and legumes.

Diet and Delayed Disease Progression or Transformative Results

Clinical trial partakers discovered that making the recommended diet changes led to the following significant health benefits:

• Weight loss: Participants lost an average of 8% of their body weight within 12 weeks.
• Improved quality of life: Many participants reported feeling healthier and more energetic.
• Better metabolic health: Improvements were observed in insulin resistance and inflammation.
• Gut microbiome health: A more diverse microbiome—a key factor in immune system strength—was noted.

Dr. Shah adds, “Four of 12 participants using prescription medications self-reported stopping them, saving a median of $65 per month.” The discontinued drugs were insulin, bupropion, potassium supplement, and hydroxychloroquine.

The trial’s findings were further validated by preclinical research in a smoldering myeloma mouse model. In the study, 44 percent of mice fed the recommended diet did not progress to multiple myeloma, compared to 100 percent progression in the group fed a standard diet.

These results encourage Dr. Shah and her team to proceed with multiple dietary clinical trials. NUTRIVENTION3, in particular, has 150 participants with precursor disorders. “We’re only beginning to understand the profound impact that nutrition can have on cancer prevention,” Dr. Shah emphasized. “This research represents a major step forward in showing how plant-based diets can serve as a powerful tool not only for managing weight but also for reducing cancer risk and improving overall health.”

Making Dietary Changes for Better Health

While diet alone cannot cure multiple myeloma, research increasingly suggests it plays a vital role in delaying progression and improving quality of life. Regarding diet, Dr. Shah recommends that “people try to get at least 80-90 percent of their calories from unprocessed plant foods.”

Acknowledging that that might sound a bit overwhelming, Francesca Castro, MS, RDN, CDN, Clinical Research Dietitian Nutritionist in the Myeloma Service at Memorial Sloan Kettering Cancer Center, assures that “dietary transitioning becomes much more manageable when you take a step-by-step approach and focus on one meal at a time.” She says, “I encourage folks to set realistic daily goals and gradually build from there. For instance, start with Meatless Mondays and expand as you feel more comfortable.” Once a day, Castro also encourages her patients to add legumes (like lentils, chickpeas, or black beans) to pasta, salads, or whole grains for a boost of protein, fiber, and micronutrients. She says, “It’s important to focus on progress, not perfection.”

Here are diet transition tips that Castro says have worked well for her patients:

1. Start Small: Incorporate plant-based ingredients or meals you already enjoy, such as oatmeal, nut butter, stir-fried vegetables, or fresh fruit.
2. Batch Cook: Prepare staples like beans, whole grains, tofu, or roasted vegetables in advance for quick and balanced meals.
3. Learn and Explore: Utilize resources from the American Institute for Cancer Research (AICR) and the American College of Lifestyle Medicine (ACLM).
4. Involve Family: Cooking and transitioning with loved ones can foster support and encourage a collective shift to healthier eating habits.

Healthy, Delicious Dishes Made Easy

 

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For many Black people, integrating culturally relevant dietary strategies is essential.

Traditional ingredients like collard greens, okra, and black-eyed peas can provide crucial nutrients while honoring heritage.

The catch? Preparing these foods healthily—such as steaming them instead of frying them—maximizes their benefits.

“I always encourage patients to cook to their own flavor preferences and experiment with modifying their own recipes and making them plant-based,” says Castro. “One of our patients was Jamaican-American and predominately ate Caribbean food in the household. We found ways to modify one of her favorite recipes of ackee and saltfish by substituting the fish with hearts of palm.

Plant-based recipes to try:

Vegan Ackee and “Saltfish”: Jamaican-inspired, with hearts of palm replacing fish.

Chickpea-Stuffed Sweet Potato and Vegetarian Callaloo Soup: Nutrient-dense and flavorful dishes from MSK dietitian Karla Giboyeaux.

Apple Cinnamon Oatmeal Cups: Easy, portable breakfast packed with fiber.

Tofu Scramble: A protein-packed alternative to eggs, perfect for breakfast.

Pumpkin Spice Bread: A warm and comforting dessert.

Go to Sweet Potato Soul or Forks Over Knives for more culturally sensitive recipes.

The post  Diet May Delay Progression to Multiple Myeloma appeared first on Black Health Matters.

What is a Clinical Trial?

A clinical trial is a study that tests a treatment to understand how and if it works and if any implications follow. Clinical trials can include treatment drugs, medical devices, or social experiences like support groups and group therapy. Real people willingly participate in them.

Myth: Clinical trial participants are treated like guinea pigs or lab rats.

Fact: Participating in a clinical trial is 100% at will. Participants are fully aware of every part of a clinical trial and sign consent forms to ensure they are made aware. Even the slightest adjustment to a study requires signing new consent forms. Additionally, participants can choose to drop out of a clinical at any time during the study without financial or other repercussions.

Myth: Clinical trials are only for those who have run out of treatment options.

Fact: Clinical trials aren’t always a last-resort treatment option. Sometimes, it is the first choice, especially if your healthcare provider believes the treatment will be most beneficial to you.

Myth: Patients can’t receive regular care from their primary doctor if they are in a clinical trial.

Fact: You should continue to see your primary care provider (PCP) and let them know that you are participating in a clinical trial. This will help you and the researchers paint a complete picture of how the treatment is (or isn’t working).

Myth: Being in a clinical trial will affect my medical insurance.

Fact: Insurance coverage is disclosed during participation screening. Additional tests or scans needed during clinical trials that are not covered by insurance are often covered by the funding provided for the trial. Further, effective January 2022, some Medicaid plans are required to cover routine patient care costs for those participating in qualifying clinical trials.

Myth: Drugs and treatments from a clinical trial are less effective than those from the doctor’s office.

Fact: “It isn’t known if the drugs or treatments in clinical trials are more effective than the current standard of care, which is why the clinical trials are so important—they allow us to see if new drugs or treatments are more effective than what is already available,” says Laraque.

“There is a chance that they are more effective, as effective, or less effective, and that’s what the clinical trials aim to find out.”

Myth: Participating in a clinical trial will make your information public, and your safety will be compromised.

Fact: “Every effort is made to ensure patient safety while on clinical trials,” affirms Laraque. Each patient is given an identification number so that sensitive information like name, date of birth, etc., is not compromised. Participants are also heavily monitored and have access to a full team of research nurses, doctors, and coordinators to ensure they are healthy and able to continue through the clinical trial.

Myth: Clinical trial results are biased because researchers want their study or treatment approved.

Fact: According to Laraque, “Clinical trials are heavily monitored by the Institutional Review Boards, Data and Safety Monitoring Committees and depending on the study, an organization sponsor. If an ongoing clinical trial shows more harm than benefit to patients, then the study will be stopped even if it is earlier than expected. If patients are experiencing unexpected adverse events, the study will also be stopped. The various monitoring boards that exist in order to conduct research make it very difficult for researchers to prove new treatments work if the data doesn’t support that.”

Participating in a clinical trial may feel foreign. Still, you can rest assured that this process is heavily monitored, patients and the research process are screened, and patient safety is the highest priority. If you can contribute to improving health, wellness, and treatments for your community, ask questions if you are considering getting involved. Think about the difference it can make in your life or the lives of others.

The post Clinical Trials: Myths vs. Facts appeared first on Black Health Matters.

According to the Cleveland Clinic, multiple myeloma is a rare blood cancer that affects about seven people out of 100,000 people.

African Americans are twice more likely to be diagnosed with this cancer than other ethnicities. Currently, there is no cure for multiple myeloma, but there are a variety of treatments that can help patients live full, healthy, and increasingly long lives after diagnosis.

What Should You Do When You Experience a Relapse?

Relapse is common with multiple myeloma, even after successful treatment options like chemotherapy, immunotherapy, and stem cell transplant.

Patients who are experiencing a relapse may find themselves with concerns and several questions. For example, how do I ask my doctor questions about my treatment plan?

What if I want to get a second opinion? What are my options if I hope to recover from this again? We interviewed survivors and oncologists to get the answers.

Take Notes

Your oncology team is there to offer advice, diagnose, and recommend medication or treatment plans based on your labs and tests. However, as the patient, you are your best barometer, and you must pay close attention to the signs your body is giving you.

Keeping a notebook to stay on top of your symptoms and concerns is wise, and staying abreast of new developments in multiple myeloma medications is beneficial.

Many new developments could turn out to be helpful for you and your oncologist.

Know Your Options

Find an Advocate

Where should you begin your research? “Look into myeloma support groups – there are lots of Facebook groups that I’m aware of, as well as the American Society for Clinical Oncology (ASCO) as well as the American Society of Hematology (ASH) —they have really good patient advocate groups, and they try to educate patients on what’s new in multiple myeloma,” says Dr. Yazan Numan of Northwestern MEDICINE’s hematology and medical oncology department. Additionally, you can read articles on Black Health Matters, the Multiple Myeloma Research Foundation, and Reddit’s multiple myeloma group to see if there are new medicines or if your symptoms match up with others sharing your experience.

Know Your Body

Pay attention to subtle changes in your body and keep your team informed. Multiple myeloma patient and MMRF mentor Evelyn Huntley offers sage advice. “As myeloma patients, we have to listen to our bodies, and if it’s not within the norm, it’s time to call the healthcare team or at least send them a message in MyChart. You may have to follow up. They get busy too, and they may not respond right away, so it’s on us as patients to follow through on anything that the doctors tell us that they’re going to do or that we need from physicians.”

Know When to Seek a Second Opinion

You’ve been taking notes and asking tough questions. But how do you know when it’s time to consider finding another doctor for a second opinion? Communication is key, and the signs are in your engagement with the team, says MMRF mentor Evelyn Huntley. “When your doctors are not listening to you, or you’re unable to communicate with them…when you’re asking your physicians questions, and they appear as if they don’t want you to ask them questions, it’s time to move on. Because as a patient, they work for you.”

Be Your Own Healthcare Boss

Your doctor may be the most experienced on your care team, but if a treatment option makes you feel unwell or uncomfortable, don’t hesitate to ask questions or speak up.

Address your concerns in specific terms and keep your medical team informed about any issues that have come to light and the changes you would like to see them make in your care plan.

“I think the first thing is to really be empowered early; you know, the best defense is a good offense. As a patient, you know exactly what’s happening to your myeloma – you should be discussing that with your doctor on each visit,” says Dr. Craig Cole of the Karmanos Cancer Institute in Detroit and associate professor at Wayne State University’s medical school.

From a patient perspective, consider yourself as the manager of your team. “Your healthcare team works for you. You’re their employer — their service is not free; we pay them for that service, and they are supposed to listen and answer our questions. And when they can’t do that, or they can’t follow through on what they’re supposed to do with us as patients, then it’s time to move on,” says Huntley.

Consider Clinical Trials

Historic fears and concerns about clinical trials have led to underrepresentation in diversity in arenas like multiple myeloma research. This cancer aggressively affects the Black community, and more research is needed to address our specific needs as treatment plans are developed.

According to Dr. Craig Cole, there’s no better time to be involved in clinical trials than now. “The reason I say that is, the quality of the drugs that are in those clinical trials are at the highest level…now we have response rates that are in the 80 and 90 percentiles for a lot of these drugs. To be in the clinical trials…that means your drug has worked at an extremely high level to make it to a clinical trial for myeloma in 2024 and 2025.” The MMRF offers an avenue to explore potentially helpful clinical trials. Click here to learn more.

Relapse is common amongst multiple myeloma patients in remission. Know that you are not alone in facing this disease; hope is on the horizon. You can read more about treatment options via Northwestern MEDICINE. For more information on living as a multiple myeloma survivor, read more at Cancer.org.

The post How to Advocate for Yourself as a Multiple Myeloma Patient appeared first on Black Health Matters.

A viewpoint article from the Journal of the American Medical Association openly criticized the document. “Far from prioritizing ‘the health and well-being of all Americans at all stages of life,’ as Project 2025 claims, the playbook presents an antiscience, anti-data, and antimedicine agenda,” wrote Nicole Huberfeld, JD, Elizabeth McCuskey, J.D., and Michael R. Ulrich, J.D., MPH in a paper published in September 2024. We break the specifics below:

Gut The Affordable Care Act, aka (Obamacare)

Project 2025 asserts, “The Affordable Care Act has made insurance more expensive and less competitive, and the ACA subsidy scheme simply masks these impacts.” For many in our community, the Affordable Care Act is the only way to obtain coverage.

Limit Drug Pricing Negotiations by the Government

The legislative plan states, “States should be the primary regulators of the medical profession, and the federal government should not restrict providers’ ability to discharge their responsibilities or limit their ability to innovate through government pricing controls or irrational Medicare and Medicaid reimbursement schemes.” This could curb the efforts of legislation like the Inflation Reduction Act.

The act names specific drugs that treat common ailments, including diabetes, heart failure, chronic kidney disease, psoriasis, psoriatic arthritis, blood cancer, and peripheral artery disease, as mandatory price negotiation selections.

It actively advocates for the act’s repeal. Under the plan, select drugs are subject to mandatory negotiation, which could be expanded.

This “negotiation” program should be repealed, and reforms in Part D that will have a meaningful impact on seniors should be pursued. Other reforms should include eliminating the coverage gap in Part D, reducing the government share in — 466 — Mandate for Leadership: The Conservative Promise the catastrophic tier, and requiring manufacturers to bear a larger share. Until the IRA is repealed, an Administration that is required to implement it must do so in a way that is prudent with its authority, minimizing the harmful effects of the law’s policies and avoiding even worse unintended consequences.

Bottom line: We might not be able to afford the necessary drugs we need.

Redefine Reproductive Healthcare.

If you have concerns about your fertility, you need to pay attention to Project 2025. In an effort to restrict abortion access, far-reaching legislation is being proposed that could affect access to in vitro fertilization, commonly known as IVF treatment. as IVF treatment. Two years later, the Supreme Court overturned Roe V. Wade in a decision that shocked many. Nabela Noor, a content creator credentialed at this year’s Democratic National Convention, spoke to her concerns about IVF being “For many women, IVF is the only choice. That choice, and more, is at stake in November,” said Noor.

Abortion restrictions have already begun impacting individuals and families. Social media mourned the life of a Georgia mother and medical professional named Amber Thurman, who died due to receiving prolonged reproductive care, according to reporting from ProPublica.

Restrict Gender-Affirming Care.

Project 2025 could directly impact those seeking healthcare that aligns with their gender expression. It says that the “HRSA should withdraw all guidance encouraging Ryan White HIV/AIDS Program service providers to provide controversial “gender transition” procedures or “gender-affirming care. They also don’t want the CDC to collect data on gender identity.

A paper published in the Journal of Nature Human Behavior in September investigated a perceived link between anti-Trans legislation and the high suicide rate among transgender people. The paper found that “The laws that pose barriers to quality healthcare, especially gender-affirming care, may undermine overall life satisfaction by reducing access to necessary healthcare that could save lives.”

Prohibit Planned Parenthood Medicare & Medicaid Funding (affecting healthcare beyond abortion access)

Planned Parenthood offers well-visits, breast cancer screenings, pelvic exams, colposcopy, cervical cancer prevention treatments, and other forms of healthcare that have nothing to do with terminating a pregnancy.

Reinstate Moral Exceptions to the Contraceptive Mandate

On January 30, 2023, the Centers for Medicare & Medicaid Services announced the Coverage of Certain Preventive Services Under the Affordable Care Act. It was collectively released by the Department of Health and Human Services (HHS), the Department of Labor, and the Department of the Treasury.”

The announcement declared, “These proposed rules, if finalized, would rescind the moral exemption to cover contraceptive services without cost-sharing while keeping the religious exemption intact and without narrowing its scope or the types of entities or individuals that may claim the religious exemption.”

“HHS should rescind, if finalized, the regulation titled ‘Coverage of Certain Preventive Services Under the Affordable Care Act,’ proposed jointly by HHS, Treasury, and Labor,” according to Project 2025.

What this means. If this happens, people in certain areas might have trouble accessing certain medications. This is because some professionals could be permitted not to dispense them on moral grounds. If you do not live in an area with many pharmacies, this can cause an issue. You would have to learn the telehealth laws in your area to determine your options for getting treatment (but then see what they are proposing about telemedicine below).

Remove the Vaccine Mandate for the Head Start program.

Project 2025 recommends eliminating the Head Start program. However, in the absence of achieving that goal, it suggests, “At the very least, the program’s COVID-19 vaccine and mask requirements should be rescinded.” The U.S. Department of Health & Human Services states, “Head Start programs support children’s growth from birth to age 5 through services centered around early learning and development, health, and family well-being.”

Regulate Telehealth Services.

The Heritage Foundation asserts that the legal definition of “the locus of service” should be “where the provider is located during the telehealth visit rather than where the patient is.” According to them, “With such a definition, states could continue to reserve their powers to establish the standards for licensure and scope of practice.” This could tie the hands of certain telehealth providers.

Doctors Could Own More Hospitals, and Private Medical Plans Would Compete with Medicare Advantage

The plan includes legislative proposals to “remove restrictions on physician-owned hospitals” and “Encourage more direct competition between Medicare Advantage and private plans.”Your

Please keep these proposed changes in mind when you go to the ballot box. Your health may depend on them.

The post 9 Ways Project 2025 Can Impact Our Healthcare appeared first on Black Health Matters.

Myeloma Link, a national initiative of Blood Cancer United (formerly known as the Leukemia and Lymphoma Society), aims to empower Black communities in 15 metropolitan areas by offering free education, enhancing access to quality myeloma care, and connecting patients to the latest treatments and clinical trials. Blood Cancer United is the global leader and innovator in creating a world without blood cancer. Blood Cancer United’s mission: Cure blood cancer and improve the quality of life of all patients and their families. BCU is focused on accelerating research, providing free support and services, and advocating for policies to ensure access to quality, affordable care.

Why It Matters

Multiple myeloma is the most common blood cancer among Black Americans, who face at least twice the risk of developing the disease compared to other racial groups. They are also more likely to be diagnosed at a younger age.

While overall survival rates have improved in recent years, progress has been slower for Black individuals, who:

• Receive advanced treatments such as autologous stem cell transplants and novel drug combinations at lower rates.
• Often experience delays in starting therapy.
• Remain underrepresented in clinical trials, perpetuating disparities in outcomes.

For lower-income Black Americans, barriers to care can be even more pronounced, leading to suboptimal treatment, higher hospitalization costs, and poorer quality of life.

Approach

Myeloma Link meets people where they are, partnering with trusted national and community-based institutions like fraternities, civic organizations, barbershops, churches, senior centers, and community health centers to break down barriers to care. The program leverages a network of BCU staff, trained community outreach volunteers, and healthcare professionals to:

• Raise awareness about myeloma symptoms, treatment options, and disparities in care.
• Connect patients and caregivers to trusted, free information and support services.
• Encourage participation in advanced treatment options, including clinical trials.
• Equip healthcare providers in Federally Qualified Health Centers (FQHCs) with up-to-date myeloma education resources.

Impact

Since its launch in 2017, Myeloma Link has:

• Reached more than 350,000 people, including patients, caregivers, healthcare providers, and community leaders.
• Hosted over 500 education events for patients, providers, and the general public.
• In FY 25 alone, BCU engaged 20,000+ Black community members through tailored patient and community education programs, national webinars, health fairs, provider outreach, and other national and local events.

The insights gained from implementing Myeloma Link across these cities have enabled BCU to position the program as a nationwide outreach to Black communities.

While Myeloma Link remains active in its original markets, its outreach strategies are now being applied more broadly to guide BCU’s efforts in expanding access to information and support for Black individuals in other regions across the country.

Key Learnings

• Listen first: Engage patients and community members early to shape outreach strategies and ensure materials resonate.
• Invest locally: Hire outreach specialists who understand and promote the well-being of the communities they serve.
• Collaborate widely: Partner with local and national organizations that hold trust and influence in the community.

The Bottom Line

Black Americans are disproportionately affected by multiple myeloma, yet with culturally informed outreach, trusted partnerships, and equitable access to cutting-edge care, disparities can be reduced. Myeloma Link demonstrates that when communities are empowered with knowledge, resources, and support, lives can be changed—and saved.

For more information about Blood Cancer United’s programs and services for blood cancer patients, visit BloodCancerUnited.org or call +1-888-557-7177.

The post Myeloma Link: Bridging Gaps in Care for Black Communities appeared first on Black Health Matters.

To bridge the awareness gap, let’s delve into some essential knowledge every mother needs.

What is Cord Blood?

Following a baby’s birth, the umbilical cord and placenta are often discarded and dismissed as postpartum biological waste. However, they hold something very special: cord blood. This is not just any blood; it’s a unique type of blood that remains in the umbilical cord and placenta after childbirth.

What sets cord blood apart is its rich content of hematopoietic stem cells, as outlined by Stanford Medicine. These cells can help strengthen the immune system, and they can even mature and grow into different types of blood cells; they hold the potential to reconstitute an individual’s entire blood supply. Their capabilities make them invaluable in the treatment of various diseases, including leukemia, genetic disorders, and immune system diseases. These reasons point to why as a community, we should think twice before discarding this life-saving resource.

How is Cord Blood Retrieved?

If you decide to store your baby’s cord blood, your healthcare provider will collect it right after they clamp and cut the umbilical cord. As explained by the Mayo Clinic, a needle is inserted into the cord to extract the blood. The blood is then put into a collection bag. This entire process takes just a few minutes and from there, the blood undergoes processing and categorization before it is dispatched for freezing.

Facts You Should Know

If you’re thinking about storing or donating cord blood, it’s important to be well-informed. The Cord Blood Association has shared some interesting, yet not widely known, facts about cord blood. Take a moment to look at these facts:

Collecting cord blood does not harm the mother or baby and does not interfere with childbirth. It is collected by one’s doctor, or the placenta is delivered and given to a cord blood collection specialist. The collection process occurs after the umbilical cord is detached from the baby.

Expecting parents should prepare in advance for the collection of cord blood. It’s recommended to talk to your obstetrical physician or other healthcare providers between the 28th and 34th week of pregnancy about our interest in storing or donating your baby’s cord blood.

Unfortunately, not every hospital offers the option of cord blood donation, so checking in with your preferred hospital is important.

Cord blood is an alternative to bone marrow. It is used in transplants because it contains many natural elements and has amazing blood-forming abilities.

While you can choose to privately bank your baby’s cord blood for potential future use by your own family, donated cord blood can be used by anyone who is a match. Your baby’s cord blood could potentially save the lives of people beyond your family, patients who don’t have a suitable family donor.

When properly stored, cord blood stem cells don’t expire. Unlike bone marrow, cord blood can be frozen and stored for years or even decades.

Will Your Family’s Cord Blood Be a Match?

Most cord blood treatments rely on matching human leukocyte antigens (HLA), these are proteins that are found on most cells in your body. Your immune system uses these markers to recognize which cells belong in your body and which do not. In many cases, cord blood from a family member isn’t always a match. Even though family members share genes, the combination of HLA markers can vary. While cord blood can be a valuable resource, it is not guaranteed to be a match for siblings or other family members. This is one of the primary reasons why cord blood banks and registries are important. They reduce the waste of viable cord blood and increase the chances of finding a match for those in need of transplants.

Public vs Private Cord Blood Banks

When it comes to cord blood banking, public and private cord blood banks offer different services.

Donating cord blood to a public bank is a generous act that comes at no cost to you. Once donated, the cord blood becomes available to any patient in need of a transplant, or it can be used for medical research. Although public banking doesn’t reserve your donation for your family alone, it can contribute to health equity in our community, ensuring that we have the same access to life-saving treatments as patients from other ethnic backgrounds.

On the other hand, private cord blood banking is a personal investment. While it does come with collection and storage fees, it ensures that your baby’s cord blood is exclusively reserved for your family’s use. Initial collection fees can cost thousands of dollars, and annual storage fees can cost several hundred dollars, but for many families, it is worth it. Private banks have more flexible guidelines, allowing them to store any amount of cord blood, regardless of the stem cell count.

If your family ever needs cord blood, retrieving your specific donation from a public bank is highly unlikely. Once you donate to a public bank, the cord blood is owned by the bank, and there’s no guarantee it will be available if needed. If guaranteed access to your baby’s cord blood is what you’re looking for, private cord banking might be the route for you.

Each type of banking comes with its own advantages and challenges. While the financial aspect often stands out in comparison, as a mother, you possess the understanding of what is best for your family. Looking further into your options is always a wise move so that you can make informed decisions that align with your family’s needs.

Why It’s Important That We Participate

Choosing to donate your newborn’s cord blood can contribute to a nationwide effort to create a genetically diverse inventory of stem cells for transplantation and treatments. Patients in need of a transplant are more likely to find a suitable match from a donor of the same ethnic background, and the importance of cord blood awareness, particularly for Black mothers, can’t be understated.

The National Marrow Donor Program has revealed that approximately 70% of patients requiring transplants don’t have fully matched family donors. These patients often depend on cord blood transplants from unrelated donors. Therefore, even if your donation doesn’t directly benefit your own family, it serves as an invaluable contribution to the broader healthcare system.

Engage in conversations about Cord Blood Awareness Month with your loved ones. Spreading awareness can significantly enhance the chances of saving lives and collectively advance the research and treatments for conditions that affect us profoundly. Every conversation counts.

The post Understanding Cord Blood (What Expectant Mothers Should Know) appeared first on Black Health Matters.

CAR T-cell therapy has emerged as a promising treatment option for a range of blood cancers. It utilizes genetically modified T cells to help target and eliminate cancer cells. CAR-T cell therapy has expanded and offers new hope for patients with previously limited treatment options.

CAR T-cell therapy is an example of how immunotherapy is transforming cancer treatment

The process of CAR T-cell therapy

CAR T-cell therapies are personalized for each patient. They are made by obtaining the patient’s T cells and recreating them in a specialized laboratory through an intricate process that can take several weeks.

NIH. National Cancer Institute.  CAR T-Cell Therapy Infographic

Cell collection

Patient’s blood is drawn, and T cells are collected, removed, and separated from the blood.

Cell creation

CAR T-cells are created in a special laboratory through a process. CAR genes are inserted into the T cells. Millions of CAR T-cells are produced.

Cell infusion

CAR T-cells are returned to the patient’s bloodstream via IV infusion in a hospital or clinic.

Cell activation

The CAR T-cells circulate in the bloodstream, attaching to the cancer cells and killing them.

Cell expansion

The CAR T-cells can continue to multiply which helps provide long-term activity of these cells with the goal of preventing cancer relapse.

Learn more about this process here.

Which blood cancers are available for CAR T-cell therapy?

The field of CAR T-cell therapy is rapidly evolving. Ongoing research is expanding its use to include additional blood cancers and solid tumors. CAR T-cell therapy provides viable treatment options for patients who may not have many options left.

Patients with blood cancers should discuss treatment options and eligibility for CAR T-cell therapy with their healthcare team to determine the most appropriate course of action based on individual patient factors.

CAR T-cell therapy can help treat the following blood cancers:

• B-cell Acute Lymphoblastic Leukemia (ALL)
• B-cell Non-Hodgkin Lymphoma (NHL)
  • Diffuse Large B-cell Lymphoma (DLBCL)
    • Primary Mediastinal B-cell Lymphoma (PMBCL)
  • Follicular Lymphoma (FL)
  • Mantle Cell Lymphoma (MCL)
• Multiple Myeloma (MM

These treatments are typically appropriate in patients who have tried and failed other treatment options. Consider discussing with your provider if CAR T-cell therapy may be an option for you.

Hope for the future

CAR T-cell therapy continues to develop with ongoing research aiming to improve its safety and effectiveness. For patients facing challenging blood cancers, CAR T-cell therapy represents a treatment option that offers hope for remission and improved quality of life.

– – –

References

• National Cancer Institute. CAR T Cells: Engineering Patients’ Immune Cells to Treat Their Cancers
• American Cancer Society. CAR T-cell Therapy and Its Side Effects

The post What is CAR T-cell Therapy? appeared first on Black Health Matters.

Similar Conditions

Psoriasis in people of color shares clinical features with several other skin conditions. Understanding key similarities and differences can promote increased awareness and help to combat misdiagnosis of psoriasis.

Cutaneous lupus erythematosus (CLE)

CLE occurs when the autoimmune condition lupus impacts the skin. It presents on the skin in various ways. Associated symptoms include redness, rashes, and lesions. Lesions may appear to be raised or flat, with or without scales, and may be of varying shapes and sizes.

Skin involvement commonly occurs on the face, neck, arms, and other areas that are exposed to sunlight. Sun exposure may worsen the rashes and is a common trigger for CLE flares. It is recommended that individuals with CLE use sun protection measures to minimize the impact.

While psoriasis and CLE share some similarities such as being autoimmune conditions and the presence of skin lesions, they differ in their causes, patterns, and overall presentation.

Hypertrophic lichen planus

The exact cause of lichen planus is not fully understood, but it is believed to be an autoimmune or inflammatory condition. Hypertrophic lichen planus is a subtype of lichen planus characterized by thickened, raised, and sometimes hyperpigmented or reddish-brown lesions.

Physical presentation includes lesions that are shiny and waxy in appearance. These lesions may develop a fine, lace-like pattern on the surface. Unlike psoriasis, these lesions usually don’t have silvery scales. Skin involvement commonly includes the shins, ankles, wrists, lower back, and mucous membranes of the mouth and other areas of the body. Mucous membrane involvement is not a common feature of psoriasis.

Plaque psoriasis and hypertrophic lichen planus may both produce raised skin lesions, but they differ in their causes and affected areas. Additionally, psoriasis is a long-term condition and symptoms do not go away on their own as they usually do in lichen planus.

Cutaneous T-cell lymphoma (CTCL)

CTCL is a form of cancer, and its cells can spread to other parts of the body, including lymph nodes and internal organs. The exact cause is not well-understood. Patients with severe psoriasis are at greater risk of developing CTCL.

It often presents with skin lesions that may resemble psoriasis. Associated symptoms include red, scaly patches or plaques, itching, and skin thickening. Unlike psoriasis, CTCL lesions may not have the typical silvery scales, and they tend to be more persistent and treatment-resistant. CTCL can grow slowly or aggressively. Early-stage CTCL often has a favorable outlook, while advanced stages can be challenging to treat.

Plaque psoriasis and cutaneous T-cell lymphoma may be similar in how they appear on the skin, but they are very different in terms of their causes and treatment. CTCL often requires a more comprehensive evaluation and treatment plan.

Sarcoidosis

Sarcoidosis is an inflammatory disorder that presents with small inflammatory nodules in various organs. The exact cause is unknown, but it is thought to involve an abnormal immune response.

In cutaneous sarcoidosis, skin lesions often appear as firm, reddish-brown plaques. They can show up anywhere on the body, including the face, extremities, and midsection. Unlike psoriasis, skin involvement in sarcoidosis typically does not feature the silvery scales seen in psoriasis.

Both conditions can present with skin lesions, but they have different underlying causes and treatment. If you have concerns that you’ve been misdiagnosed with a skin condition, it is important that you discuss your concerns with your healthcare provider.

If you or someone you know has been diagnosed with plaque psoriasis learn more about the LATITUDE study.

References

• The Journal of Clinical and Aesthetic Dermatology. Special Considerations in the Diagnosis and Treatment of Psoriasis
• JAMA Dermatology Patient Page. Cutaneous Lupus Erythematosus
• Journal of Clinical Medicine. Topographic Differential Diagnosis of Chronic Plaque Psoriasis: Challenges and Tricks
• Metabolism Open. Understanding the enigmatic association between mycosis fungoides and psoriasis: Report of two cases and review of the literature
• JAMA Dermatology Case Report/Case Series. Sarcoidosis and Psoriasis
• A Case Series and Review of the Literature Exploring Co-Incidence vs Coincidence

The post Are You Sure It’s Psoriasis? appeared first on Black Health Matters.

CAR T-cell therapy

Chimeric Antigen Receptor T-cell (CAR T-cell) therapy has shown great success in treating some blood cancers. This type of treatment uses a personal approach to target and destroy cancer cells using the immune system.

CAR T-cell therapy uses gene changes to the T-cells to effectively target cancer cells. Over the past several years, CAR T-cell therapies have been FDA approved for the treatment of different blood cancers.

Click here to learn more about CAR T-cell therapy.

Treatment for newly diagnosed disease

Treatment options for blood cancers have evolved in recent years. There are several new treatment options and strategies. The treatment used depends on many factors including age, overall health, genetics, and the cancer characteristics.

When newly diagnosed with cancer, it’s important to work closely with the healthcare team to determine the most appropriate and effective treatment plan. The treatment plan should be based on individual circumstances and the latest treatment advancements. Early diagnosis is key.

Maintenance therapy

After the first round of treatment, maintenance drug therapy is usually next. Maintenance therapy is a type of long-term treatment that is often used in blood cancers. Maintenance therapy can help prolong remission and improve overall patient survival.

The choice of maintenance therapy should be personalized. There should be shared decision-making with the healthcare team.

Looking forward

The recent advancements in the treatment of blood cancers represent progress in managing these complex and challenging types of cancer. The development of targeted therapies and immunotherapies are promising.

Research and clinical trials continue to promote progress. We must continue to raise awareness by collaborating with healthcare providers and researchers in the ongoing fight against blood cancers.

– – –

References

• American Society of Hematology. Blood cancers.
• National Cancer Institute. Multiple Myeloma Awareness and African American Disparities
• International Myeloma Foundation. Disparities in African Americans
• Leukemia & Lymphoma Society. Understanding Blood Cancers and Treatment Options.
• Multiple Myeloma Research Foundation. The latest myeloma treatment advances from ASCO 2023
• Blood Cancer Journal. Black patients with multiple myeloma have better survival than white patients when treated equally: a matched cohort study
• National Cancer Institute. CAR T Cells: Engineering Patients’ Immune Cells to Treat Their Cancers
• University of Colorado Cancer Center. Blood Cancer.
• American Society of Hematology Education Program. Newly diagnosed multiple myeloma: making sense of the menu

The post Blood Cancers and Recent Advancements in Treatment appeared first on Black Health Matters.

How do you think knowledge of cervical and its treatment have changed?

Felder: We’re doing better than we were but are not where we should be. Sometimes, I feel like I’m not an expert, but I am because I have experienced the disease. I have my ear to the streets talking to patients.

But the biggest problem I see is  Black women are still falling through the cracks.

Women of color across the board are being overlooked, but Black women are falling through the cracks because:

1. We are diagnosed late.
2. Our follow-up isn’t good, whether it is on us or our medical team.

I can speak to that firsthand. I often say the only difference between me and someone else who looks like me who has been diagnosed is I had great insurance and a primary care doctor who found my cancer and woman-handled me to make sure I followed up.

I kept saying, “I don’t have cancer.” My father had died from cancer, and I thought I knew what it looked like. I got all of these second opinions. One of them, an older Black female doctor at Howard University Hospital, was the catalyst that led me to schedule my hysterectomy when she told me my cervix looked like chewed-up meat. I was mad when she said that, but I scheduled the surgery.

What is different today?

Felder: We have better tools. When I was diagnosed in 2001, we only had the PAP test. The HPV test came in 2003, and the vaccine in 2006. There is still a lot of controversy surrounding the HPV vaccine, but I wholeheartedly believe in it because I see too many people of every ethnicity die of cervical cancer.

But when I see someone who looks like me and is around the same age, I have survivor’s guilt because, unlike breast cancer and blood cancers, we should absolutely be winning the war. After all, we know the cause of most cervical cancers.

We have diagnostic screening tools to detect abnormal cells to ensure that if people are diagnosed, we can get them treated early, and we have a vaccine to prevent it in future generations.

What made you start Cervivor?

I was pissed off, I was sitting at my desk in the newsroom, and there was information about a breast cancer walk. I thought, where is the walk for cervical cancer? The doctors I saw for second opinions and the one who found my cancer kept saying they saw my situation all the time. How come I am not hearing about it? They told me women thought their husbands were cheating and vice versa. I saw the need for education. Patients weren’t talking about cervical cancer because it’s embarrassing. I saw that the disease had a marketing problem.

And I couldn’t stop talking about cervical cancer. Here we are decades later and still have to talk about it. I am a Black woman from South Carolina, you don’t tell all your business. But I am also a storyteller because I worked as a television producer for many years. I created a toolbox for telling your story and getting involved. I wasn’t the first person to talk about cervical cancer, but I was the first black woman to be vocal about the disease.

I am okay being the coochie cancer lady. That wasn’t my dream growing up, that this would be part of the legacy that I leave, but I own it now.

I thought my legacy wouldn’t be the lives I brought into the world. It was going to be the lives that I saved.

But a little over a year ago, your life changed when you and your husband became parents with the help of egg donation and surrogacy. How has your son Chayton impacted your work?

This baby has become a beacon of hope for people because it is another way to share my story. A woman sent me a message that I was her surrogacy mentor. And I said, “God, you have stirred up some stuff in me.” Who knew that becoming a mother would be the continuum?

One survivor said, “It’s like your story has come full circle.”

For me, that means my son won’t have to worry about HPV. My stepdaughter won’t have to worry about HPV-related cancers. And if someone is diagnosed with an HPV-related cancer, it’ll be something that they got, not something they did to themselves because it’s so common.

The post Tamika Felder On Cervical Cancer Survivorship, Motherhood & Leaving a Legacy appeared first on Black Health Matters.

Both of Collier’s parents had the trait, so he had a 25% chance of being born with the disease.

Earlier this month, when the FDA announced approval for Casgevy and Lyfgenia, two gene therapy treatments that target SCD, Collier was already aware of them because his hematologist thought he might be a good candidate, even though he is in his fifties. But he has adopted a wait-and-see attitude about these breakthroughs.

But Collier has seen many treatments throughout his life, including penicillin, folic acid, and hydroxyurea, to name a few. He spent much of his childhood in the hospital, starting with a splenectomy at six months old. “I came out of the womb with sickle cell anemia, but when I was practically living at the hospital, I knew my life was different,” he recalls. “I missed anywhere from a few weeks  to a few months of school because of a sickle cell crisis or episode.”

According to Johns Hopkins, a crisis occurs when blood flow is blocked to an area because the sickled cells have become stuck in the blood vessel. The pain can occur anywhere but most often in the chest, arms, and legs. Infants and young children may have painful swelling of the fingers and toes.

Collier explains that SCD impacts individual patients differently. Growing up in Chicago, being in cold air or water for too long could trigger a crisis. Yet he became a swimmer and a lifeguard in high school by developing preventative strategies that helped him avoid triggers.

Sickle Cell Disease Takes a Mental Toll

Twenty-four-year-old Amanda Christopher explains that having SCD is both a physical and psychological battle. As a child, she was bullied and labeled contagious by her peers at school. “Aside from the natural pain and suffering one goes through physically, the mental battle was the hardest to overcome. I truly know firsthand what it is like to feel trapped and tortured mentally and physically in your own body,” she says. “No one discussed the mental experiences sickle cell brings: depression, suicidal moments, and frequent hospital stays.”

Amanda Christopher sees her experiences with the disease as a blessing and curse because they have made her more compassionate toward other people’s struggles.

Karen Christopher, Amanda’s mother, opted to add a holistic approach to her daughter’s disease from an early age. “Having a child with SCD made us more health conscious in general. I never wanted Amanda to feel different,” she says. “My main objective was for Amanda to have a quality of life, which I felt the medical community alone could not offer her.” Collier took a similar tactic when he reached adulthood, altering his diet and lifestyle choices (no meat, dairy, or fried foods) and adding a holistic practitioner to his team of doctors. For the Christophers and Collier, holistic approaches have lessened their incidences of crises and hospitalization.

Amanda Christopher has concerns about these breakthroughs. “I am always happy to hear about medical advances within our community, but I would love a wider spectrum of natural treatments studied and offered on the same mainstream scale as other medications and procedures,” she says.

What You Should Know About the Gene Therapies?

How They Work

Casgevy, is made by Vertex and CRISPR Therapeutics. It uses CRISPR/Cas9, a flexible and powerful gene-editing technique, to modify a person’s blood stem cells so that they produce fetal hemoglobin, a form of the oxygen-carrying protein that usually goes away shortly after birth. According to the FDA, fetal hemoglobin (HbF) can prevent the sickling of red blood cells. At the same time, Lyfgenia therapy by Bluebird Bio Inc. takes a different tack. It uses a virus to slip a gene inside patients’ blood stem cells that allows them to produce healthy hemoglobin, and as a result, the crescent-shaped red blood cells don’t form.

There are about 100,000 people living with sickle cell disease in the United States. but only 20,000, who are 12 and older and are experiencing debilitating pain, may be eligible for these treatments.

These Therapies Take Time and Have a High Price Tag

The price tags for each of these treatments are pretty high. $2.2 million for Casgevy and $3.1 million for Lyfgenia. However, both companies estimate the lifetime cost of treatment for a patient with recurrent crises to be between four and six million dollars over their lifetime. “With one at just over $2 million and the other over $3 million, I wonder how [our community] will benefit. That’s a significant concern for me,” Collier notes. And FYI, these price tags mean distributing these treatments in Africa may be cost-prohibitive.

The process is also resource-extensive, requiring prolonged hospital stay and monitoring. It may take up to a year to complete. And there are some warnings. Like a bone marrow transplant, each of these new therapies requires ‘conditioning treatments,” which involve patients receiving several rounds of chemotherapy to wipe out their bone marrow (which makes their blood cells and platelets) in preparation for receiving the new cells created by these therapies.

However, the conditioning treatment may cause infertility, so egg retrieval options would need to be discussed, and insurance coverage varies for the process. And Lyfgenia does come with what is called a “black box warning” that it may cause blood cancer.

Then there is the question of coverage. Bluebird Bio has reported that it has already signed a large reimbursement deal and is also in discussions with 15 Medicaid agencies that cover 80% of SCD. Vertex estimates that many of the 16,000 eligible for their treatment are also covered by Medicaid.

They Are  Not Widely Available Yet

Only nine hospitals have been authorized to do Casgevy treatments (more are expected). Most of these locations are facilities focused on the treatment of children:

• Boston Medical Center
• Children’s National Hospital in Washington, D.C.
• City of Hope Children’s Cancer Center in Los Angeles
• Medical City Children’s Hospital in Dallas
• Methodist Children’s Hospital in San Antonio
• Nationwide Children’s Hospital in Columbus, Ohio
• The Children’s Hospital at TriStar Centennial in Nashville, Tenn.
• The Arthur G. James Cancer Hospital and Solove Research Institute in Columbus, Ohio
• University of Chicago Medicine Comer Children’s Hospital

Lyfgenia is set for commercial launch early next year and will be distributed at their qualified treatment centers, which will receive additional training.

However, a potential stumbling block is a lack of hematologists who treat adults. A 2019 study reported a shortage of classically trained hematologists who can treat patients transitioning out of pediatric care, especially in rural areas. And when it comes to sickle cell disease, more mentorship is also needed in the profession.

“Many of the treatments offered at the moment, including the CRISPR cure, are not monetarily accessible to the communities of people who need it,” Amanda Christopher says. “I want to see more compassion from medical professionals so that they can study the illness more humanely and find ways to treat us sicklers without further pain being involved. I feel the same way about other illnesses, such as cancer as well. It just takes the right group of scientists.”

Her mother notes that she has seen more television commercials and more research material readily available today on SCD. Karen Christopher says, “I am extremely happy that the medical community has finally given SCD the attention it has long needed, and the future of having SCD gives hope and a future to its patients.”

While Collier is unsure about how these new therapies will directly impact his SCD journey, he sees the potential for the people coming behind him. “Those who are maybe 10 or 20 years old, newborns that are going to be coming into this world and still have to deal with the disease,” he explains. “I am excited for them and their families because it can potentially change the trajectory of their lives from a health perspective. But as a patient that has been dealing with SCD for decades, I’ll wait and see.”
Realated Topics:
Women With SCD Sterilized By Coercion
Breaking Down The New Sickle Cell Gene Therapies (And Reactions From SCD Patients)

The post Breaking Down The New Sickle Cell Gene Therapies (And Reactions From SCD Patients) appeared first on Black Health Matters.

Multiple myeloma is a type of cancer that develops in bone marrow and can prevent the immune system from working properly. Left unchecked, myeloma cells can continue to multiply and spread causing problems in other parts of the body. Although multiple myeloma is considered a rare cancer, it is the most common form of blood cancer among African Americans. In fact, African Americans are more than twice as likely to be diagnosed with multiple myeloma compared to White Americans and are usually diagnosed at a younger age.

Evelyn, who had battled breast cancer years earlier, recalls the shock of this news, “The first few months it felt like a rollercoaster because you don’t want to believe that you have this disease.”

Through her treatment journey, she learned a lot about her condition, recognized the profound impact of a support system and became aware of the lack of representation among African Americans living with multiple myeloma. Determined to ensure that others wouldn’t have to feel alone in their own battle, she became an inspirational mentor, offering valuable insights and a comforting presence to fellow patients. With the wisdom gained through her journey, Evelyn has a wealth of advice to share, encouraging others to advocate for themselves and to never lose hope in their pursuit of a brighter tomorrow.

“Do your research.”

Evelyn knew she needed to get educated about this disease and understand her treatment options, but the heavy emotional burden made it difficult to absorb new information and ask the right questions.

Her oncologist urged her not to rely on basic internet searches for answers, which can often yield outdated information, but to seek reputable organizations, like the Multiple Myeloma Research Foundation (MMRF) and the Blood Cancer United to learn more about what multiple myeloma is and how it affects African Americans specifically. These credible sources kept her informed about treatment options, clinical trials and ways to manage the challenges associated with the disease.

One in five people living with multiple myeloma are African American, yet representation among patient advocates is limited. Evelyn recalls a conversation with an MMRF nurse who said, “A lot of times we get African American patients that call and say they want to speak to someone who looks like them, but we don’t have anyone.” It emphasized the need for better representation and support within the healthcare system, inspiring Evelyn to be that support for others living with multiple myeloma.

She recalls the first patient she mentored with fondness. “I remember pulling over and sitting in the parking lot talking for about two hours. He was crying and just trying to wrap his head around the diagnosis.” Since she had been in that position before, she began to share her experience. He saw that it wasn’t an immediate death sentence for him, but that most cases are treatable,” said Evelyn.

Their connection remains unshaken to this day, a living testament to the power of empathy and shared experiences. “He has a new outlook on life now,” she says.

“Get a second opinion.”

Her most important piece of advice to those who have just received a diagnosis is to get a second opinion from a multiple myeloma specialist. She learned that from her own oncologist who referred her to a multiple myeloma specialist. He felt her myeloma wasn’t responding as well as it could. But this doesn’t mean giving up an oncologist you’re comfortable with.

What worked for Evelyn was adding the specialist to her existing care team, expanding the treatment approaches to consider. She collaborated with her care team and they made those decisions together.

“Advocate for yourself.”

Evelyn’s experience taught her that navigating this complex disease required not only resilience but advocacy. She comes prepared with questions for her specialists, goes in for regular screenings and is keenly aware of how her body is responding to therapy. As a mentor, she empowers other patients to understand their disease and seek answers that help them feel in control of their care.

Clinical trials have played a major role in advancing treatments for multiple myeloma and other conditions, but African Americans are generally underrepresented, making it difficult to understand how treatments impact the community. As a clinical trial participant, Evelyn has encouraged others to strongly consider that option if their treatment regimen is ineffective, they are eligible and the opportunity arises. “People respond differently [to treatments]; it’s not one-size-fits-all for multiple myeloma.”

Evidence shows that African American patients who receive treatment for multiple myeloma can do just as well as, and sometimes better than, White Americans. Yet, research has shown that African Americans have benefited less from recent medical advancements that have led to improvements in survival in more recent years. As of 2022, only 4% of patients in multiple myeloma clinical trials were African American despite making up 20% of people living with multiple myeloma today. Begging Evelyn’s point, “If we don’t participate in the trial, what do we have to say?”

*        *        *        *

Evelyn’s journey has been deeply influenced by the unwavering support of her faith, family, and friends. Her faith provided her with strength, guiding her through the challenges with unwavering hope. Her family and friends, a pillar of support, offered encouragement, love, and a sense of belonging during the toughest moments.

Evelyn admits, “You have days where you give yourself a pity party. But give yourself 48 hours and then you have to get up and let it go.” When times are uncertain, Evelyn offers perspective she can stand by, “I think that with all experiences there’s something good that comes out of it.”

For more information about multiple myeloma and resources to help navigate your care in your discussions with your healthcare provider, visit MyelomaCentral.com.

Real patient compensated for sharing her experience.

The post What One Warrior Wants You to Know About Multiple Myeloma appeared first on Black Health Matters.

Roland S. Martin recalled how former Raiders player Elijah Alexander succumbed to the disease after being dismissed by healthcare professionals at the Black Health Matters Fall 2023 Health Summit & Expo. “He kept complaining about his feet hurting. The doctors kept saying, ‘Oh, it’s from your career.’ He eventually died of this very disease,” said the journalist, author, and media personality.

Advocacy can make a difference in how multiple myeloma is discovered and treated.

Martin moderated a discussion with Denise N. Bronner, PhD Director Diversity, Equity, and Inclusion in Cánical Trials Immunology Portfolio Jansen and Marsha Calloway-Campbell, J.D. Director, Black Myeloma Health, HealthTree Foundation at the summit. They discussed health disparities associated with this form of cancer. The trio was introduced by actor and producer James Pickens (Grey’s Anatomy).

Calloway-Campbell’s husband was misdiagnosed with arthritis in 2017. He had multiple myeloma. She emphasized the importance of self-advocacy. “Nobody’s going to take care of you like you, not even your family, so you have to know what signs and symptoms are of many different diseases,” said Calloway-Campbell.

How can multiple myeloma be misdiagnosed?

Myeloma lesions were mistaken for arthritis on the scans of Calloway-Campbell’s husband. Dr. Bronner was forced to advocate for her father, who suffered from multiple myeloma when healthcare workers interrogated him. They assumed he was taking drugs when he arrived with fluids on his lungs. Without her stepping in, they might not have asked the right questions. Eventually, they got “lucky” with a cardiologist who closely examined the bloodwork and realized that multiple myeloma was a possibility.

Martin cited how medical professionals can stubbornly refuse to set aside their assumptions.

“You have medical folks who say, who are you? I’m the expert,” he said. “I know what’s better.”

He raised the stereotypes of the angry Black person that patients have to fight against when facing this type of challenge.”

Prominent figures of the past are frequently used to illustrate the problem of systemic racism in the medical field. “They always talk about prejudice or racism in a historical sense,” said Dr. Bronner. “They’ll bring up Tuskegee, right? They’ll bring up Henrietta Lacks, but I said this is persistent; it’s been here, it’s ingrained in there. You have a lot of doctors who continue to have these certain ideas about you because you’re Black.”

How can medical misconceptions contribute to misdiagnosis?

Pain is a symptom of multiple myeloma, causing potential friction for patients subject to the horrors of medical racism.

“It’s a notion that Black people have a higher tolerance of pain,” added Dr. Bronner. “That’s also an issue.”

“Myeloma is a journey in and of itself, and when you add the disparities that now we’re talking about, we’re not seen, we’re not heard,” said Calloway-Campbell.

The treatment experienced by Dr. Bronner’s father was not rare. According to the Proceedings of the National Academy of Sciences of the United States of America (PNAS), “Black Americans are systematically undertreated for pain relative to white Americans.”

Calloway-Campbell described how Black patients are treated when seeking help for their pain. “Bone pain, and it’s often in your back. It’s one of the symptoms, so when you present to the ER, that’s what it is,” she said before listing a question Black patients are frequently met with. “What narcotics are you trying to get?”

Dr. Bronner recommended questioning the doctors you’re dealing with. Calloway-Campbell agreed. “Doctors are not proactive in doing the testing to see if multiple myeloma is a possibility,” she said. “When you look at many medical textbooks, we’re not there,” Dr. Bronner added. “When you look at some of the medical research that’s out there, the papers that have been published, we are not there, so you have to say to yourself what their knowledge is based on.”

Take Action!

The session provided valuable and practical tips for advocating for yourself if you suspect you’re experiencing symptoms associated with multiple myeloma.

• The acronym CRAB indicates four common symptoms you might want to consider when deciding if you should ask to be tested for multiple myeloma. C stands for high calcium, R stands for high renal urinal counts, A stands for anemia, and B stands for bone pain.
• Pushing on your doctors can result in better results. Advocate vocally and in writing. They are the experts in medicine, but you are the expert in you.
•  Pay attention to your bloodwork and track any change in the numbers to arrive armed with facts.

This session was presented by Janssen.

The panel:

Roland S. Martin, Journalist, Author, and Media Personality

Denise N. Bronner, PhD, Director Diversity, Equity, and Inclusion in Clinical Trials Immunology Portfolio Janssen

Marsha Calloway-Campbell, J.D. Director, Black Myeloma Health, HealthTree Foundation

The post My Word, My Health: Addressing Health Disparities in Multiple Myeloma appeared first on Black Health Matters.

Substantial strides have been made in enhancing survival rates, yet glaring disparities persist. Black Americans face higher diagnosis rates at younger ages and are confronted with elevated mortality rates. By joining forces, we can strive towards narrowing these gaps and fostering improved prospects for all individuals affected by multiple myeloma.

The Multiple Myeloma Research Foundation facilitates connections with specialized healthcare teams, ensure accurate diagnostic testing, and grant access to tailored treatments. Through relentless research and collaborative efforts, we envision a future unburdened by the shackles of multiple myeloma.

The post Multiple Myeloma and Its Impact on the Black Community appeared first on Black Health Matters.

What is Brain Cancer?

There are over 100 different types of brain tumors. While not all of them are malignant brain tumors, they can be life-threatening simply because of the complexity of the brain and the symptoms they can cause. Brain and spinal cord tumors can affect everything from the pituitary gland to the cerebrospinal fluid. Essentially, any part of the brain and central nervous system is susceptible to cancer.

Brain Cancer vs. Brain Tumors

All brain cancers are tumors, but not all tumor cells are cancerous. Some tumors are slow growing and don’t pose an immediate threat. Benign brain tumors can be any size and may be malignant brain tumors in the future.

Brain Tumor Types

From gliomas affecting glial cells to germ cell tumors that begin in reproductive cells that travel to the brain, both primary and secondary brain tumors are serious conditions that should be treated by an experienced team of providers.

• Benign Brain Tumors: These are noncancerous brain tumors that are slow growing and may only need to be watched for signs of cancer in the future. They can be located anywhere in the brain or spinal cord.
• Malignant Brain Tumors: Cancerous brain tumors are primary brain tumors that start in the brain or spinal cord. A brain tumor that starts here may metastasize and spread to another area of the body.
• Metastatic Brain Tumors: Also called secondary brain tumors, these originate in another area of the body and spread to the brain. They commonly begin as lung cancer, breast cancer, and pancreatic cancer.

Risk Factors for Brain Cancer

The American Cancer Society, after researching brain and spinal cord cancer extensively, has not found any risk factors for brain tumors. While some brain tumor types can be linked to radiation therapy used to treat other types of cancer, such as leukemia, other tumors may have no apparent cause. Still, there are some inherited conditions like neurofibromatosis, tuberous sclerosis, and Turcot syndrome that may put you at greater risk for specific brain cancers. Many believe that cell phone use leads to brain cancer, and there are ongoing studies to determine the risk, but there is no known connection at this time.

Brain Tumor Symptoms

The brain is complex and the symptoms caused by a tumor will vary depending on the location of it and its size. For example, vision problems could be a sign of a tumor affecting the temporal lobe, occipital lobe, or brain stem, while an inability to look up may show a pineal gland tumor. The symptoms you experience are clues that your healthcare team will initially use to diagnose the tumor and begin tests to pinpoint it.

• Double vision and other vision changes
• Difficulty swallowing (brain stem)
• Lactation, even in men (pituitary gland)
• A change in menstrual cycle
• Weakness or paralysis (frontal lobe)
• Confusion
• A change in speech or hearing (occipital lobe or temporal lobe)
• Memory problems
• Loss of balance (cerebellum)
• A feeling of pressure near the tumor
• Headache
• Nausea or vomiting
• Fatigue
• Difficulty sleeping
• Siezures

Brain Tumor Treatment

Brain tumor treatment will be different based on individual circumstances. Your team of experienced physicians and other providers will recommend the best treatments. However, these are some of the available treatments that they may offer.

• Craniotomy: Brain surgery to remove the tumor is often one of the first suggestions depending on its size and location.
• Radiation Therapy: This treatment can shrink the tumor, especially if it’s too large to remove initially.
• Brachytherapy: Radiation therapy can be targeted to the brain tumor by surgically placing a radioactive item next to it.
• Chemotherapy: Strong medications are used to kill cancer cells. They often use it with other cancer treatments.
• Immunotherapy: Also called biological therapy, immunotherapy helps to boost your body’s natural fighting ability.
• Targeted Therapy: Drugs fight the specific type of tumor cells present, leaving surrounding brain tissue healthy.

African Americans and Brain Cancer

Black people, and Black men in particular, are more affected by brain cancer than other races. Disparities in the healthcare system can account for some of the problem, but not all. African Americans may be more susceptible simply because of their ethnic background.

Most Common Tumor Subtypes

The six most common brain tumor types for African American adults are lymphoma, meningioma (both benign and malignant), glioma, astrocytoma, glioblastoma multiforme, and anaplastic astrocytoma. According to a 2014 study published in the Medical Science Monitor, those aged 20 to 49 are most susceptible to lymphoma, while those over 50 are more likely to develop glioblastoma.

The Survival Statistics

The survival rates for those with brain cancer vary depending on multiple factors, including the type, location, how advanced the cancer is when found, responsiveness to treatment, and more. However, there are general estimates created based on recent studies and published by the American Cancer Society. Ependymoma has the highest average five-year survival rate when caught early at over 90% while glioblastoma has the lowest. For those over 55, the survival rate is just 6%.

Pediatric Brain Cancer

Leukemia was once the deadliest childhood cancer, but that has since been replaced by brain cancer. One contributing factor is racial disparities in healthcare. Over recent years, survival rates for children with leukemia have improved, while those with brain cancer have declined. Because glioblastoma multiforme is one of the most common brain cancers in African Americans and mixed-race children, the length of time before receiving a diagnosis, the quality of treatment, and post-treatment care are all playing large roles in survival rates.

One study evaluated patients under the age of 19 from 2000 to 2015 and found that five-year survival rates for non-Hispanic White children were over 50% while African American children had an average survival rate of just 44%, the lowest of all races represented.

Barriers to Treating Brain Tumors

The barriers to treating brain cancers are the same for both children and adults. Unfortunately, a brain tumor can present with symptoms that are brushed aside far too long and a patient may not receive a diagnosis until the cancer has advanced and treatment options are limited. Even after receiving a diagnosis, a patient may not have access to the care they need for proper treatment of brain cancer.

Socioeconomic Factors

Many African Americans live in low-income neighborhoods without access to a primary care physician who may notice brain tumor symptoms early. If they do, there may not be a large hospital network or specialist provider nearby that can treat their brain cancer. Black people are less likely to have health insurance coverage, so paying for this treatment may be challenging or impossible. Even the cost of taking time off work or requiring family members to do so in order to take them to medical appointments may be too high a financial burden for those diagnosed with any type of life-threatening illness like cancer, limiting their options for treatment.

Provider and Systemic Racism

Providers who do not understand the differences in care required by the Black community may not recognize brain cancer symptoms or treat them as seriously as they might for a non-Hispanic White patient. This racial equality bias within the healthcare system may result in a delay of treatment that can allow the cancer to advance. Systemic racism has been a part of Medicare and Medicaid since the beginning, influenced by early funding and race relations at the time. While policies are beginning to change, it can be more challenging for African American patients to get the care they need, especially when struggling through an already difficult time.

Lack of Diversity in Clinical Trials

The biggest barrier to treating Black people with brain cancer is simply not understanding how brain tumors affect them. This is because there is a lack of diversity in clinical trials. Minorities in general are underrepresented in the trials that have published results as well as information about the races included in the study. As many as 70% of recent clinical trials do not publish or have not noted the ethnic background of those taking part, which makes it difficult to understand how brain cancer and various treatments are different for African Americans.

The Black Population and Brain Cancer

Is it a benign tumor? Is it malignant? Do you have to worry about secondary brain tumors and it having begun somewhere else? With no known risk factors for brain cancer, it’s difficult to catch early, but even more challenging for Black people who suffer from socioeconomic and healthcare disparities that become barriers to diagnosis and treatment. Only with awareness of brain cancer and these barriers can we ensure everyone gets the treatment they need and deserve. Black Health Matters is working diligently to do just that.

The post Empowering African Americans in the Battle Against Brain Cancer appeared first on Black Health Matters.

Types of Oral Cancers

As with most conditions, there are several types of mouth cancer. It may be in a specific place initially, and possibly spread to other locations within the mouth, to the lymph nodes, and throughout the body. Much like breast cancer and other forms, the risk of spreading is abundant and should be monitored.

Most oral cancers are squamous cells that line the tissues of the mouth. Other common types of mouth cancer include lymphoma, which typically affects the lymph nodes and the tonsils, while minor salivary gland carcinomas affect the salivary glands of the mouth and throat.

Common locations for oral cancers include:

• Lip Cancer: This is the most common type of mouth cancer and typically has a positive prognosis when caught early.
• Gum Cancer: Typically linked to chewing tobacco and alcohol use, this cancer can quickly spread to the jaw.
• Tongue Cancer: When in the front two-thirds of the tongue, it can quickly spread to the lymph nodes.
• Doctors classify cancer at the back of the tongue, tonsils, and back of the mouth as throat cancer.

Determining Severity

Cancer Research UK breaks down the stages and grades of oral cancers. Determining the severity of the cancer is an essential first step for diagnosis before treatment can begin. It helps to ensure that treatment is as effective as possible.

Oral Cancer Staging

Doctors can use two methods for determining the stage of your oral cancer. The first is clinical staging, using results from tests and scans. They typically perform pathological staging if you will have surgery to remove the cancer and they will send part of the removed tissue to the lab for testing. It is more precise and can help determine the type of cancer as well as the cancer’s location if it has spread.

There are two ways to stage mouth cancer:

• TNM: Your doctor will consider the size and depth of the tumor, whether it has spread to the lymph nodes, and whether it has spread to another part of the body.
• Number Stages: Your doctor will assign a number zero (pre-cancer) through 4 A, B, or C based on how invasive the cancer has become.

Mouth Cancer Grades

Oral cancer grading differs from staging. This step involves the appearance of cancer cells, from looking like typical, healthy cells to abnormal cells well differentiated from the healthy cells around the tumor. Your doctor will assess them and assign a grade 1, 2 or 3. A “Gx” grade means it can’t be determined.

Oral Cancer Risk Factors

There are many lifestyle choices, health conditions, and other variables that may increase your chances of developing oral cancer. Remember that you have some control over several factors, like smoking cigarettes, that could improve your health and risk, while not others.

• Nicotine Products: The most common cause of mouth cancer is tobacco use, especially smoking or chewing tobacco. While those who use nicotine themselves are at highest risk, even secondhand exposure can lead to cancer.
• Alcohol Use: Drinking alcohol is one of the top risk factors for mouth cancer and heavy drinkers or those who drink and use nicotine products are most susceptible.
• Human papillomavirus (HPV): Not all types of HPV cause cancer, but some are high risk. For example, HPV16 causes approximately 70% of all cases of oral cancers.
• Gender: Oral cancer is twice as common in men than women. Researchers believe smoking causes the higher rates of oral cancer in men.
• Age: Most cases of mouth cancer occur in those over the age of 50 unless caused by an HPV-related infection. This is because it takes time for cells to mutate and develop.
• Weight: Based on statistical research, weight has some effect on your likelihood of developing oral cancer.
• Diet: People who eat a diet low in vegetables and fruits seem to be at a much higher risk. Eating a well-balanced diet may help improve risk factors for many health conditions like diabetes.
• UV Light: Sunlight contributes to skin cancer and may also affect rates of lip cancer, a form of mouth cancer.
• Co-Existing Health Conditions: Those who have Fanconi anemia or Dyskeratosis congenita are also at higher risk of developing oral cancer because of their predisposition to blood diseases.

Possible Treatment Options

Your primary care physician will refer you to a specialist who will evaluate your condition and recommend the best treatment plan. It could include surgery, chemotherapy, or radiation therapy, depending on the type, location and severity of the cancer. You will probably work with a team of providers, including one or more of those listed here.

• Otolaryngologist
• Oral and Maxillofacial Surgeon
• Radiation Oncologist
• Medical Oncologist
• Plastic Surgeon

Detecting Oral Cancer Early

An early diagnosis is important for improving survival rates. Healthcare professionals can easily spot signs of mouth cancer by looking for lesions within the oral cavity, feeling for enlarged lymph nodes, asking about family history, and referring a patient to a specialist for any suspect symptoms.

Symptoms of oral cancer may include:

• Changes in the skin
• Lumps
• Numbness
• Pain or tenderness
• Change in bite
• Problems swallowing
• Difficulty chewing
• Hoarseness
• Feeling like something is caught in the throat
• Sore throat
• Ringing in the ears or ear pain

Mouth Cancer in African Americans

There are many barriers for Black men and women with mouth cancer, from biological differences affecting successful treatment to the number of people who use nicotine products to access to health care resources ensuring early detection and proper cancer treatment.

Genetic Differences

Two recent studies have shown that a Black person with oral cancer will likely respond differently to treatment. The first, published in 2021 in JCO Oncology Practice, showed that African Americans have fewer immune cells within oral cancer tumors and they don’t respond as effectively to the same treatments as Caucasian patients. Tumors may also show more instances of mutations. The second, published in 2022 in the Journal of the National Cancer Institute, reviewed the treatment outcomes of both the Black population and white people enrolled in clinical trials. In clinical trials, all patients receive the same cancer treatment, so socioeconomic factors are minimized. The results showed that biological factors still play a large role in survival rates.

Lifestyle Choices

The Oral Cancer Foundation reports that those living below the poverty line are more likely to smoke than those that don’t. Given that many African Americans live in poorer neighborhoods and are more likely to suffer from un- or underemployment, this puts them at higher risk of smoking, using chewing tobacco, or using other forms of nicotine-based products. Some states within the US also have higher rates of smoking than others. The states with the highest rates of smokers are Nevada, Kentucky, and Ohio, while those with the lowest rates are Utah, Hawaii, and California. Compared to others, Blacks or multiracial people self-identifying as African American are more likely to smoke than Caucasians or Hispanics.

Related Conditions

There are more than 100 types of human papillomavirus (HPV). While not all of them cause cancer, some strains are more common within the Black community may explain why mouth cancer is so much more prevalent. Some types of HPV infections were more common in Caucasians, like types 16 and 51, while others were more common in Blacks. Type 35 is one of the highest risk factors for mouth cancer.

Access to Resources

Why is access to resources so important? Researchers have well documented that early detection is less likely with minimal access to resources, such as adequate health insurance and local medical providers. Studies show that if cases are discovered early, the 5-year survival rate can reach 85%, but only 28% of all cases are found early. However, more than half of all oral cancers are diagnosed after having spread to local tissues such as the lymph nodes. The survival rate at this point drops to 68%. If the cancer has spread further, it drops to just 40%.

According to the Kaiser Family Foundation, Black people are less likely to have health insurance because of a financial barrier. They are also more likely to live below the poverty line but not qualify for state financial aid or not be able to utilize those resources if they do because of lack of transportation. Food insecurity may lead families to focus more on day-to-day needs and not long-term care like their health. This reduces the chance they will receive a routine dental exam with an accompanied oral cancer exam.

It’s also clear that Blacks do not receive the same level of care that white Americans do. Brigham and Women’s Hospital recently found that race, among other factors, played a role in whether a dentist even screened for mouth cancer during a routine dental exam. Dentists may also not provide education about the risk factors and the steps they can take to help prevent oral cancer, especially smoking and human papillomavirus.

Oral Cancer Awareness Month: Recognizing Black Americans

The first step in improving oral health and bettering the survival rates of mouth cancer, especially for Black Americans, is to acknowledge the problem. The American Cancer Society reports that cancer rates for Black people have decreased since the 1990s and this is a trend we wish to see continue. Black Health Matters will do our part by raising awareness of the effects of mouth cancer on the African American population.

The post A Hidden Danger: What You Should Know About Oral Cancer appeared first on Black Health Matters.

The History of National Minority Health Month

Raising awareness about minority health goes all the way back to 1915, when Booker T. Washington laid the foundation. National Negro Health Week (NNHW) focused on the poor living and working conditions that plagued mostly Black neighborhoods and employment opportunities.

From there, the US Department of Health and Human Services (HHS) launched Healthy People 2010. This was the third iteration of this initiative, following previous ones in 1990 and 2000, and focused on eliminating health disparities across all ethnic minority groups.

Not long after, the US Congress called for an awareness month to promote the efforts currently underway and encourage further action to reduce the health disparities affecting minorities, establishing National Minority Health Month in April 2002.

Why Do We Celebrate It?

The goal of National Minority Health Month is to help “promote and protect the health of diverse populations through research and communication of science that addresses health disparities.” But what does this mean?

Throughout April, the FDA and other federal, state, and local agencies increase collaboration on a shared initiative, addressing health disparities through awareness and education. To better understand their goals and how they achieve them, you should know a few key concepts.

• Health equity is the equal opportunity to be healthy. While some ethnic minorities are predisposed to health conditions simply because of their race, they should have the same access to insurance coverage, medical care, community resources, language access, and health literacy that any other race has access to.

• Health disparities are the disproportionate health outcomes of one group of people compared to another because of health inequity. The Kaiser Family Foundation found that three months into the Covid-19 pandemic, almost triple the number of African Americans were hospitalized compared to white people and over twice as many had died. There were many underlying health disparities, like lower socioeconomic status and higher risk of other chronic health conditions that were not well managed.

• Health literacy is the understanding of a person’s health or the ability to find the information needed. It also includes the ability to understand the information they find, regardless of language and education barriers. Learning about clinical trials is just one part of health literacy, especially if a clinical trial applies to how your health condition may help both you and future patients.

National Minority Health Month aims to raise awareness of better health for all racial and ethnic minorities by advancing health equity, reducing health disparities, and improving health literacy.

What is This Year’s Theme?

This year’s theme is “Better Health Through Better Understanding.” While the OMHHE supports many initiatives year-round, this theme allows them to share the importance of one in particular. The Enhance Equity Initiative focuses on addressing the underrepresentation of minorities in clinical trials.

Previous National Minority Health Month themes include:

• “Give Your Community a Boost!” to encourage Covid-19 vaccination (2022)

• “Active and Healthy” to emphasize staying physically active and enhancing emotional wellness (2020)

• “Partnering for Health Equity” to raise awareness about current efforts to address the disproportionate burden of various ethnic groups in health care, housing, employment, and more (2018)

• “Accelerating Health Equity for the Nation” to create a better understanding of health disparities and how they affect racial groups (2016)

• “30 Years of Advancing Health Equity” celebrated 30 years of the Heckler Report, which helped to prove the existence of racial inequalities in health care (2015)

Why is This Important?

ProPublica published an analysis of a recent clinical trial of a medication used to treat Multiple Myeloma, a devastating blood cancer. While approximately 20% of all Multiple Myeloma patients in the US are African American, only 13 of the 722 participants in the clinical trial were Black. This is less than 2% of all participants. Because ethnic minority populations, especially Black people, seem to have a genetic predisposition to this cancer, it often leads to more severe disease complications, and they react differently to many treatment options, being so grossly underrepresented in a clinical trial may affect whether this medication is as effective for them as it is for the non-Hispanic Caucasian participants.

However, this new initiative may help raise awareness of these problems, so clinical trials include ethnic minority groups in appropriate numbers and document these participants’ results accurately. Researchers can then work toward improving health outcomes for minority populations, reducing disparities in treatment outcomes. With better communication between the FDA, other research agencies, and health providers, more minority communities can benefit from current and future clinical trials.

Conditions Affecting the Black Community

National Minority Health Month 2023 helps to raise awareness of the benefits of clinical trials through the “Better Health Through Better Understanding” initiative. Those affected by certain conditions may benefit from joining a clinical trial to both test new treatments and play a role in approving effective ones that may benefit many more patients in the future. Some conditions affect African Americans more than others and are, therefore, most important to have an accurate representation of the Black community involved.

Cardiovascular Disease

Health education is vital to the prevention of most heart disease. Some clinical studies in the past have followed those without cardiovascular disease to see who would develop it and who wouldn’t be based on family history, lifestyle choices, and other factors. Learning what risk factors could be affected and to what degree has helped providers adjust treatment based on the health needs of their patients. Current and future clinical trials continue to research risk factors and treatment options, as it is the leading cause of death among all ages, genders, and races in the United States.

Stroke

Closely tied to heart disease is the risk of stroke, which can lead to premature death in Black Americans and other minorities. It is vital that Blacks are accurately represented in clinical trials studying stroke because they are 50% more likely to have one. Black women are at the highest risk. Compared to non-Hispanic White people, over 70% more Blacks will die from their stroke. To truly understand the underlying causes of these health disparities and what can be done to address them, African Americans should be made aware of these clinical trials and encouraged to take part.

Diabetes

Prevention is key, but with so many risk factors, Type 2 diabetes may be unavoidable for some Black Americans. Diabetes comes with the risk of many disease complications, some of them life-threatening. There are ongoing clinical trials to help reduce these risks and perhaps reverse the condition. Every trial is different and may require participants in different stages of the disease or with varying demographics. If you have been diagnosed with diabetes and are interested in new treatment options, be sure to discuss the possibility of a clinical trial with your healthcare provider.

Cancer

While cancer is a leading cause of death among all races, some forms are more prevalent among Blacks. These include breast, prostate, colorectal, and lung cancer. Through various studies over the last several decades, it’s been found that the increased risk for cancer can be linked to poor diet, especially common in low-income households; environmental pollution like smog and asbestos which are frequently seen in underprivileged neighborhoods; poor lifestyle choices like smoking that have much higher rates for Black men than for Caucasians; and family history. Clinical studies for cancer are likely specific to the type, so if you are diagnosed with cancer, discuss the possibility of participating in one with your oncologist or another specialist provider.

Sickle Cell Disease

Sickle cell anemia is most often seen in infants and is a medical emergency. There are some medications available to help control the sickling of red blood cells, decrease vascular blockages, control inflammation and pain, and reduce the chance of disease complications. However, some patients may need blood transfusions or bone marrow transplants to control the disease. There are ongoing clinical trials to help develop new treatment options to better manage or treat sickle cell disease that you or your child may qualify for.

HIV/AIDS

A study published by the American Journal of Public Health found that Black men who have sex with men are 14 times more likely than non-Hispanic Whites to test positive for HIV. The number of Blacks currently living with HIV compared to Whites is nearly double and these numbers are continuing to worsen. The average age of initial infection is declining, meaning many Black men are reaching adulthood with HIV. Another study proved that many clinical trials do not accurately address minority health or even gender, although doing so is vital to improving outcomes from new HIV/AIDS treatments for African Americans and all ethnic minorities.

Conclusion

National Minority Health Month helps to raise awareness of the disproportionate burden that Black Americans face every year because of inequities in our health care system. By addressing disparities through easier access to resources and better representation in clinical trials, we may resolve these inequities soon. Black Health Matters support National Minority Health Month by supporting the well-being of African Americans through education and awareness.

The post What Is National Minority Health Month? appeared first on Black Health Matters.

Multiple Myeloma: Plasma Cell Cancer

Plasma is the fluid part of your blood, making up over half of its volume, that carries blood cells, platelets, water, salt, and other essential components throughout your body. Another vital component created by plasma is the antibodies that make up part of your immune system. It is created in the bone marrow, a spongy tissue inside your bones. “B cells” (B lymphocytes) and “T cells” (T lymphocytes and thymocytes) live in the bone marrow along with plasma. When activated by the immune system, these lymphocytes mature into plasma, giving the body the additional plasma it needs to fight infections.

Cancerous myeloma cells crowd the bone marrow, leaving no room for healthy blood cells and plasma-producing tissue. Myeloma cells produce harmful proteins that cause a long list of symptoms and complications. By the time it is diagnosed, this cancer has usually spread to several locations throughout the body, making it multiple myeloma.

Symptoms of Multiple Myeloma

While many of the signs of multiple myeloma are general and could indicate several health conditions, the most notable symptom is bone pain. This is most commonly felt in your spine or chest and can be persistent and, at times, debilitating. However, in the early stages, the disease may present very mild symptoms or none at all. In fact, routine blood work finds many cases without any complaints of symptoms or ones a patient assumes are because of a common illness like the flu. Still, you should know the symptoms of multiple myeloma that include:

• Fatigue/lethargy
• Brain fog or confusion
• Nausea
• Constipation
• Loss of appetite/weight loss
• Excessive thirst
• Numbness in your legs
• Frequent infections

As abnormal plasma cells grow in number, patients are likely to experience additional symptoms related to complications, like kidney problems. The body’s inability to attack germs leads to frequent infections, resulting in acute symptoms that should be treated as they arise.

Possible Complications

The symptoms of multiple myeloma are because of the breakdown of health bone marrow as myeloma cells crowd the limited space. Fewer healthy blood cells as the cancer worsens results in complications felt throughout the body.

• Anemia: Red blood cells are produced in the bone marrow. With fewer red blood cells, anemia may lead to a lack of energy, rapid heartbeat, dizziness, headache, and more. Some of the treatment options for multiple myeloma may even contribute to anemia in some patients.
• Bone Disease: As myeloma cells crowd the bone marrow, osteoporosis can set in, making bones thinner and more brittle. Eventually bone lesions may form, creating holes. These bones are much more likely to fracture.
• Gastrointestinal Issues: These problems are typically caused by treatments and not necessarily the disease itself. There are many ways to help relieve symptoms, including self care and medications.
• Heart and Lung Problems: Those with multiple myeloma are more likely to suffer from a blood clot, cardiovascular disease, and pulmonary hypertension because of the disease itself, treatment options, and living a more sedentary lifestyle as the disease progresses.
• Kidney Failure: One of the harmful antibodies created by abnormal plasma cells, monoclonal proteins, damages the renal tubes and glomeruli of the kidneys, eventually leading to kidney failure.
• Myelosuppression: Anemia is just one side effect of bone marrow suppression caused by the reduced production of red blood cells. Other disorders that may develop because of myelosuppression include neutropenia (low white blood cells) and thrombocytopenia (low platelets).
• Chronic Pain: The two most common forms of pain experienced by those with multiple myeloma are bone pain and peripheral neuropathy. Peripheral neuropathy is caused by damage to the nerves, especially those of the arms and legs.
• Steroid Side Effects: Long-term use of steroids can lead to both physical and mental effects that can be short-term, returning to normal once the medication is stopped, or long-term. They can include everything from muscle cramps to cataracts to personality changes.

Causes and Risk Factors

Research has suggested that monoclonal gammopathy of undetermined significance, or MGUS, can cause multiple myeloma cells to form. Excess amounts of M protein in your blood begin formation in the bone marrow, which could be the first sign that something is amiss. There is no treatment required for MGUS, but your healthcare provider should monitor it for any changes.

Researchers and providers have determined other risk factors for multiple myeloma that include:

• Age: MM is rare in those under 35, but those over 65 are at highest risk.
• Gender: Men are more likely to develop multiple myeloma than women.
• Family History: Many people with multiple myeloma do not have any family history of the disease. Still, genetics may contribute to risk.
• Health: Pre-existing conditions affecting the immune system or inflammatory conditions like cardiovascular disease increase risk.
• Chemical or Radiation Exposure: Being exposed to some pesticides and herbicides increases risk, as does prolonged exposure to radiation.
• Previous Plasma Cell Tumor: Also known as solitary plasmacytoma, these tumors increase the chance of develop multiple myeloma in the future.
• Occupation: Some studies have shown that those in certain professions are at higher risk, like firefighters.

Multiple Myeloma Treatments

Those with multiple myeloma will likely work with a team of providers to help treat the cancer and improve quality of life. This will include a primary care provider, dietician, physical or occupational therapist, orthopedic surgeon, radiation oncologist, bone marrow transplant specialist, and others. It’s vital for the team to coordinate efforts to ensure you get the best care possible and that treatments are effective at managing symptoms.

Types of multiple myeloma treatment options include:

• Surgery
• Radiation therapy
• Medication
• Stem cell transplant
• CAR T-cell therapy
• Supportive treatments
• Clinical trails
• Complementary medicine
• Palliative care

Multiple Myeloma and Black People

As frightening a disease as multiple myeloma is, it is more so for the black race. From genetics to socioeconomic status, Black people suffer from more risk factors than white people. These risk factors are compounded by clinical trials that fail to account for them.

Startling Statistics

The International Myeloma Foundation estimates that African Americans will make up nearly a quarter of the newly diagnosed cases of multiple myeloma by 2034. Yet, today, they only account for 8% of the participants in clinical trials.

Just as alarming is how many Black people are affected by multiple myeloma today. Black people are typically diagnosed at an earlier age and are twice as likely to be diagnosed as white people. They are also twice as likely to die from the disease. It is the number one most common blood cancer in the African American population, including those of mixed race.

More troubling is that the average African American patient is less likely to:

• Receive a timely diagnosis
• Turn to novel therapies like bortezomib
• Research new treatments
• Utilize stem cell transplant or CAR T-Cell therapy
• Receive inpatient chemotherapy
• Have access to culturally sensitive palliative care options

Biological Factors

Studies published in the Blood Cancer Journal have shown that MGUS and other plasma cell disorders are much more likely in those with family history, making them strong risk factors. Because Black women are already twice as likely to experience MGUS as white women, this increases the risk of developing multiple myeloma as well. Other studies seem to support these findings. Studies have shown that multiple myeloma is closely linked with biological risk factors, such as cardiovascular disease, diabetes, and obesity. These health conditions, and cancer in general, are known to affect the Black race disproportionately.

Socioeconomic Factors

The black community is less likely to receive preventative healthcare because they are also less likely to have adequate health insurance to cover such care. Many cases of multiple myeloma are diagnosed before symptoms even arise, caught early during routine lab work. A primary medical provider can often detect MGUS, a precursor to multiple myeloma, early and monitor it closely. Even with health insurance, Black people may not have a clinic or hospital nearby at which to seek such preventative care, “letting it slide” when they do experience mild symptoms.

If diagnosed, many African Americans don’t have access to the most effective new treatments. Socioeconomic status may mean they have limited or no health insurance to cover them and lack proximity to clinics with modern healthcare technology. When cancer symptoms worsen, lack of access to the most effective treatments, combined with limited palliative care options, may decrease quality of life and life expectancy. Without racial equality in cancer care because of socioeconomic factors, the black population suffers.

Cancer Research

Black Americans are often underrepresented in research studies and clinical trials for multiple myeloma. In one study referenced by WebMD, they estimated that only 18% of those taking part were from various ethnic groups. Non-Hispanic white people made up the vast majority. Considering the biological factors putting black people at higher risk for the disease, this puts them at a disadvantage for developing new and more effective treatment options. There are many reasons for this disparity, from lack of awareness of such studies to proximity to study locations. Still, this inequity in minority representation needs to be addressed for this and other plasma cell disorders, so researchers can better understand what role ethnic background plays in determining risk.

Multiple Myeloma: It’s In Our Bones

Research has shown that, when given an equal opportunity for healthcare and financial stability, outcomes for Black people are similar to those of European ancestry. By promoting clinical trials and researching new treatments, fighting for equality in healthcare and addressing disparities within Black communities, we can improve the well-being of all African Americans, including those suffering from multiple myeloma. By raising awareness, Black Health Matters is helping to address this important issue for African American and multiracial people.

The post Understanding Multiple Myeloma: Answering The Questions appeared first on Black Health Matters.

Every so often an opinion poll goes around on social media asking if folks would want to know in advance if they carry genetic material that could cause a fatal disease. Most people say no. Some of these diseases are terrifying, and advanced knowledge about something for which there is no cure? No thanks.

I’ve been a health reporter for years and know full well that early detection is crucial. But I’ve never taken any of these polls. Honestly, I’ve never felt the need.

That stance was called into question when my mom contracted pneumonia.

While in the hospital being treated, her medical team noticed fluid buildup caused by a leaking valve. A cardiac catheterization showed no blockage in her arteries (“she has the arteries of a 17-year-old,” one cardiologist said in amazement). A trans-esophageal echocardiogram was equally uninformative. Yes, her mitral valve was leaking. No, they didn’t know why.

But maybe she was a candidate for a relatively new procedure to repair the valve. If so, she’d be good as new. To prepare for the new procedure, she needed an MRI.

The MRI showed Mom’s heart muscle was thicker than it should be. This led to a heart biopsy. And finally, a diagnosis: something called amyloidosis. My mom struggled to pronounce it for a while. It could cause heart failure, they said.

We learned that there are several types of amyloidosis, so we needed to find out which type of amyloidosis she had. There is light chain amyloidosis, which sounded suspiciously akin to a blood cancer to my health journalist’s ears. I couldn’t get a straight answer about this, even when the recommended therapy for this type of amyloidosis included chemotherapy. There is wild-type ATTR amyloidosis, which the doctors said typically occurs later in life. And hereditary ATTR (hATTR) amyloidosis, a genetic and rare form of the disease that affects about 50,000 people worldwide with about 3-4% of African Americans carrying a TTR gene variant (i.e., mutation) called Val122Ile (V122I).

There were a lot of tests involved to determine which kind of amyloidosis she had. One night she had to produce nine huge tubes of blood. Then there was the three-gallon jug to collect a week’s worth of urine; this was to test Mom’s kidneys. She was also scheduled to have a bone marrow biopsy and a body X-ray.

There were also lots of questions about family history. Both my maternal grandparents suffered from congestive heart failure (CHF). My grandmother, who passed away at age 76, had diabetes, and though the link between diabetes and heart disease wasn’t discussed with her during her lifetime, CHF was listed as the cause of death on her death certificate. Granddaddy, once a smoker, battled emphysema and CHF the last two years of his life. Though he’d quit smoking before I was born, and had been nicotine free for nearly 40 years, his tobacco habit exacted a high price in the end. When he died at age 85, there’d been no mention of amyloidosis.

Knowing Family Medical History Is Key

While we waited for test results, a genetic counselor charted our family medical tree as best as she could. But as in many African American families, figuring out the tangled branches is a tall order. Even before being diagnosed with a disease we’d never heard of, there were gigantic holes in our family health history.

There’s the great-aunt who blamed her daughter’s death from asthma on a blister. High blood pressure and diabetes had run roughshod through generations of relatives, but nobody talked about the connection to heart disease. Scads of ancestors died without ever sharing their diagnoses. And this is all without taking into account the limitations 400 years of slavery and the difficulty African American families have in gathering complete medical knowledge.

Fortunately, blood test results solved the four-month-long mystery. My mom tested positive for a TTR gene variant associated with hATTR amyloidosis less than 12 hours before her bone marrow biopsy, rendering that painful test unnecessary.

I must note a couple of things so I don’t sound whiny and ungrateful: 1) Mom had been through so many tests—some invasive, a few pretty painful—so we were relieved to have a name for what ailed her, and 2) though four months of tests and questions seemed like a lot to us, her diagnosis came relatively quickly. hATTR amyloidosis often stumps folks in the medical community because its symptoms mimic so many other conditions, sometimes leaving patients suffering for years without a diagnosis.

It’s in the Genes

Our genetic counselor stressed the importance of understanding how hATTR amyloidosis can be passed down through families. Genetic counseling can help folks understand their chances of developing the condition, as well as make them familiar with the testing process and implications of a diagnosis. Genetic counselors also can help people understand the issues related to genetic testing—from personal risk to possible insurance impact— and can help determine if a genetic test may be right for them.

hATTR amyloidosis is caused by a variant or change in the TTR gene. This gene change affects the function of a protein called transthyretin (TTR). The condition is inherited in an autosomal dominant fashion, meaning a person needs to inherit only one copy of the affected gene from one parent in order to develop the disease. Everybody gets two copies of the TTR gene, one inherited from each parent. When one parent carries a variant in the TTR gene, each child will have a 50 percent chance of inheriting that variant. However, inheriting the TTR gene with a variant does not necessarily mean that he or she will develop hATTR amyloidosis.

My mom, one of six children, would need to discuss this with her siblings in the hopes they’d all get tested. She’d done the heavy lifting; they would need to have only a blood or saliva test to find out if they’d inherited the variant.

Our genetic counselor made it even easier. She supplied us with detailed information about hATTR amyloidosis and included geneticists in every city where family members reside. She also noted that a family member can inherit the TTR gene with a variant but having the variant does not mean hATTR amyloidosis is a given. Put simply: A person can carry the variant without ever developing the disease.

Still, only one of Mom’s siblings—her youngest sister—was tested (she doesn’t have the variant, so her only child, a son, doesn’t need the test). The remaining brothers and sisters have dragged their feet about testing, even though they all have young adult grandchildren on the verge of building lives and families. This information could be vital in their decision to have children—or not.

As much as I hate needles, I was tested last fall. What’s that saying? Knowing is half the battle. While I’m not showing any symptoms of hATTR amyloidosis, I did test positive for the genetic variant. The way I see it, my dark cloud is lined with a double layer of silver: I don’t have children, so this branch of the variant stops with me, and by knowing the results now, I’m better prepared should I start seeing signs of this disease down the road.

Genetic Testing 101

One option for genetic testing is through the Alnylam Act® program. Alnylam Pharmaceuticals is sponsoring no-charge, third-party genetic testing and counseling for individuals who may carry one of the 120 or more gene variants known to be associated with hATTR amyloidosis. The Alnylam Act program was created to provide access to genetic testing and counseling to patients as a way to help people make more informed decisions about their health. While Alnylam provides financial support for this program, tests and services are performed by independent third parties. Healthcare professionals must confirm that patients meet certain criteria to use the program. Alnylam receives de-identified patient data from this program, but at no time does Alnylam receive patient-identifiable information. Alnylam may use healthcare professional contact information for research purposes. Both genetic testing and genetic counseling are available in the U.S. and Canada. Healthcare professionals or patients who use this program have no obligation to recommend, purchase, order, prescribe, promote, administer, use or support any Alnylam product. In addition, no patients, healthcare professionals, or payers, including government payers, are billed for this program.

For more information about hATTR amyloidosis and genetic testing, please visit Alnylam’s The Bridge® and Alnylam Act.

For additional information and support check these resources:
o Amyloidosis Foundation: amyloidosis.org
o Amyloidosis Support Groups: amyloidosissupport.org
o Amyloidosis Research Consortium: arci.org
o The Foundation for Peripheral Neuropathy: www.foundationforpn.org/
o National Organization for Rare Disorders: rarediseases.org
o Global Genes: globalgenes.org

Alnylam Pharmaceuticals does not endorse and is not responsible for the content on sites that are not owned and operated by Alnylam Pharmaceuticals.

Content sponsored and provided by Alnylam Pharmaceuticals. Intended for U.S. audiences only.

The Bridge and Alnylam Act are registered trademarks of Alnylam Pharmaceuticals, Inc. © 2023 Alnylam Pharmaceuticals, Inc. All rights reserved.

TTR02-USA-01004-V3

The post We Have What? hATTR Amyloidosis: My Family’s Journey appeared first on Black Health Matters.

Multiple myeloma is a cancer of a person’s white plasma cells, the cells that fight infection and disease, and it can permanently weaken bones and damage organs. It’s a rare and incurable disease that often returns even after successful treatment.

Black people are more than twice as likely to be diagnosed with multiple myeloma than White people, and there’s some debate as to why they’re at greater risk. Black patients with multiple myeloma do, however, live longer than White patients with similar disease symptoms when both receive the same treatments.

Most people have never heard of multiple myeloma when they’re diagnosed. We at BHM understand the lack of familiarity could make a multiple myeloma diagnosis more difficult emotionally than other cancers. While it’s more anxiety and stress because you don’t know what to expect, there are ways you can take control of the situation to help you achieve the best outcome.

First, remain hopeful. People with multiple myeloma are living longer than ever before. There is no cure, but many medical advancements have been made over the past decade. In the 1990s, about 3 in 10 patients survived five years after being diagnosed. Today, about half of all multiple myeloma patients may expect to survive five years or more5.

Build a care team. After receiving a diagnosis of multiple myeloma, it is important to build your care team. Your care team should include a multiple myeloma specialist. Given many treatment options, new drug approvals, and ongoing clinical trials, it helps to have a specialist who’s on top of new developments as they come. (If you are interested in learning more about if you are eligible for a trial from Bristol Myers Squibb, click ’s here.)

Keep a notebook. After a multiple myeloma diagnosis, a lot of information will be coming your way from your cancer care team—much of which can be hard to remember. You should start taking notes as soon as you’re diagnosed, regardless of what type of medical professional you are seeing. Keep track of any questions, dates, medicine schedules, and how you are feeling. All of this important information will be helpful to your cancer care team.

Eat a healthy diet. Eating a healthy diet may help improve some multiple myeloma symptoms. Eating well may also help alleviate some psychological symptoms, such as depression and anxiety, that many people with multiple myeloma can experience. Eating well ensures you get the nutrients your body needs to boost your immunity, improve your strength, and positively impact your overall health and well-being.6

Talk openly with your family and friends. Be open about your diagnosis and your needs. Your healthcare team can teach you how to tell others. Many people in your life will want to help and support you. Determine who can be your primary caregiver and ask for their help. MyLifeLine.org7 is one tool that can connect your friends and family with the kinds of help you need.

Try to be mindful and relax. You should focus on being peaceful and present, although it’s not always easy to feel calm when you’re dealing with multiple myeloma. Start with things that help you relax such as a walk, yoga, meditation, or cooking. There are also meditations, mindfulness, and hypnosis apps that can help.

Multiple myeloma is managed over many years, and ultimately, the goal is to make a plan that gives you as much control as possible. There are many organizations, support groups, and other resources you can leverage along the way.

The post Taking Control When You’re Diagnosed with Multiple Myeloma  appeared first on Black Health Matters.

Multiple myeloma is a cancer of a person’s white plasma cells, the cells that fight infection and disease, and it can permanently weaken bones and damage organs. It’s a rare and incurable disease that often returns after successful treatment.^[2]

When you have multiple myeloma, sometimes eating is the last thing you want to do. The symptoms of this illness and the effects of treatment can make it hard to have an appetite or eat as much as you want to. But getting the right nutrients and enough of them is an important part of getting well.^[3]

A few diet tips and tricks can make it easier to eat well and nourish your body. Also, ask your doctor about working with a dietitian, who can help you choose the right foods. Here are some dietary tips from the Leukemia & Lymphoma Society^[4] for individuals undergoing treatment for multiple myeloma:

• Maintain a healthy weight. Depending on what type of treatment you undergo for multiple myeloma, you may experience weight changes. Aim to maintain a healthy weight during treatment, avoiding excess gain or loss. Strict dieting during treatment is not recommended.
• Eat small, frequent meals throughout the day. Eating frequent small meals will ensure your body is getting adequate calories, protein, and nutrients to endure treatment. Smaller meals may also help to minimize treatment-related side effects such as nausea. Try eating 5-6 small meals or “mini” meals about every 3 hours.
• Choose foods that are bland and easy on your stomach. Since medications used to treat multiple myeloma often cause nausea and vomiting, avoid foods that are spicy and fried. Avoid foods with strong odors. Instead, choose foods that are at room temperature and bland such as crackers, cheese, canned fruit, yogurt, toast, potatoes, rice, and pasta.
• Choose protein-rich foods. Protein helps the body to repair cells and tissues. It also aids in the recovery and maintenance of the immune system. Choose to include a source of lean protein at all meals and snacks. Good sources of lean protein include lean meats (chicken, fish, or turkey), eggs, nuts, beans, and soy foods.
• Eat a variety of fruits and vegetables every day. Fruits and vegetables offer the body antioxidants which can help fight against cancer. Choose a variety of colorful fruits and vegetables to get the greatest benefit. Aim to eat a minimum of 5 servings of whole fruits and vegetables daily.
• Stay hydrated. Drinking enough fluids during cancer treatment is important for preventing dehydration. Aim to drink 64 ounces of fluid daily. Avoid drinking large amounts of caffeinated beverages as too much caffeine can lead to dehydration.
• Limit sweets and added sugars. Foods high in added sugars like desserts and sweets provide little nutritional benefit and often take the place of other nutritious foods.
• Drink alcohol in moderation, if at all. Alcohol may contribute to dehydration, can impair the immune system, and provides no beneficial nutrients.
• Be observant of changes in bowel habits. Chemotherapy can sometimes cause changes in bowel habits, such as constipation, bloating, and gas. It is important for you to communicate with your healthcare team any changes in your bowel habits. Changes in your food choices or medications may be necessary to manage these side effects.
• Talk to your healthcare team before taking any vitamins or supplements. Some medications and cancer treatments may interact with vitamins and supplements. Choose food first as the primary source for nutrients.

Nutrition is particularly important for patients who might be considering trials ^[5]. You can find out if you’re eligible for Bristol Myers Squibb multiple myeloma trials here.

Your multiple myeloma journey is unique to you and your treatment. You may experience side effects that affect your ability to follow these suggestions. A registered dietitian can suggest nutrition guidelines that may be appropriate for your particular journey.

^[1] https://pearlpoint.org/i-have-multiple-myeloma-what-should-i-eat/, Accessed September 30, 2022
^[2]  https://www.cancer.org/cancer/multiple-myeloma/after-treatment/follow-up.html, Accessed September 30, 2022
^[3] https://www.webmd.com/cancer/multiple-myeloma/diet-blood-cancer-myeloma, Accessed September 30, 2022
^[4]https://pearlpoint.org/i-have-multiple-myeloma-what-should-i-eat/#:~:text=Aim%20to%20eat%20a%20minimum,broiled%2C%20or%20grilled%20foods%20instead., Accessed September 30, 2022
^[5] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5654371/, Accessed September 30, 2022

The post Maintaining Nutrition When You Have Multiple Myeloma appeared first on Black Health Matters.

Multiple myeloma is a cancer of a person’s white plasma cells, the cells that fight infection and disease, and it can permanently weaken bones and damage organs. It’s a rare and incurable disease that often returns after successful treatment.^[1]

For some people with multiple myeloma, treatment can remove or destroy the cancer, according to the American Cancer Society. For others, the cancer might never go away completely, and you might get regular treatment with chemotherapy and other treatments to try and keep the cancer in check.^[2]

In both cases, there’s a certain level of strength and anxiety involved, either because you’re worried about cancer returning after successful treatment or that you’re learning to live with cancer that doesn’t go away.

But you can return to some familiar things and make new choices as part of your journey after you’ve faced multiple myeloma, advises the American Cancer Society^[3]:

• Follow-up care: During and after treatment, it’s very important to go to all follow-up appointments. During these visits, your doctor will ask about symptoms, examine you and order blood tests or imaging tests such as CT scans or x-rays. Follow-up is needed to see if the cancer has come back, if more treatment is needed, and to check for any side effects. This is the time to talk to your cancer care team about any changes or problems you notice and any questions or concerns you have.
• Ask your doctor for a survivorship care plan^[4]: A survivorship care plan is a record of your cancer and treatment history, as well as any check-ups or follow-up tests you need in the future. Those tests include early detection, or screening, tests for other types of cancer, or tests to look for long-term health effects from your cancer or its treatment. This plan could also include diet and physical activity suggestions and reminders to keep your appointments for your primary care physician, who will monitor your general health care.
• Keep health insurance and copies of your medical records: Even after treatment, it’s very important to keep health insurance. Tests and doctor visits cost a lot, and even though no one wants to think about their cancer coming back, this could happen. At some point after your cancer treatment, you might find yourself seeing a new doctor who doesn’t know about your medical history. It’s important to keep copies of your medical records to give your new doctor the details of your diagnosis and treatment.
• Take steps to lower your risk of multiple myeloma progressing or coming back: If you have (or have had) multiple myeloma, you probably want to know if there are things you can do that might lower your risk of the cancer growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements. Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. However, medical professionals say these types of changes can have positive effects on your health that can extend beyond your risk of myeloma or other cancers.
• What to do if the multiple myeloma comes back: If the cancer does recur at some point, your treatment options will depend on where the cancer is located, what treatments you’ve had before, and your health. Speak to your doctor about approaches, particularly if you should consider clinical trials. You can find out if you’re eligible for Bristol Myers Squibb multiple myeloma trials here.
• Get emotional support: Some amount of feeling depressed, anxious, or worried is normal when multiple myeloma is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether friends and family, religious groups, support groups, professional counselors, or others.

^[1] https://www.cancer.org/cancer/multiple-myeloma/after-treatment/follow-up.html, Accessed September 30, 2022
^[2] https://www.cancer.org/cancer/multiple-myeloma/after-treatment/follow-up.html, Accessed September 30, 2022
^[3] https://www.cancer.org/cancer/multiple-myeloma/after-treatment/follow-up.html, Accessed September 30, 2022
^[4]https://www.cancer.org/treatment/survivorship-during-and-after-treatment/long-term-health-concerns/survivorship-care-plans.html, Accessed September 30, 2022

The post Life After Multiple Myeloma appeared first on Black Health Matters.

Symptoms of relapse may be similar to the initial onset of multiple myeloma, different or nonexistent.

Here’s a list of some things you might experience:

• Bone pain (especially in your spine or chest)
• Weakness in numbness in your legs
• Unexplained broken bones or fractures
• Recurrent unexplained infections (sinus, UTI, pneumonia)
• Nausea
• Constipation
• Loss of appetite
• Mental fogginess or confusion
• Fatigue
• Weight loss
• Excessive thirst

Multiple myeloma is rare, with approximately 34,000 new cases diagnosed in the U.S. each year. In total, the disease accounts for about 1 to 2% of all cancers diagnosed, and about 10% of all blood cancers. Multiple myeloma is more common in men than in women and tends to arise in older adults (the average age of diagnosis is 65-70).

Multiple myeloma is twice as common in the Black community and is twice as deadly in Black patients compared to White patients. Additionally, the conditions associated with the development of multiple myeloma (including monoclonal gammopathy of undetermined significance, or MGUS, the existence of an abnormal protein) are seen frequently in Black patients, according to the Multiple Myeloma Research Foundation.

Modern therapies have transformed multiple myeloma from a fatal disease to a chronic, manageable condition for many patients. Some people live 10 years or more with multiple myeloma. As with most types of cancer, early diagnosis and treatment help people live longer. Standard treatment options include targeted therapy, immunotherapy, chemotherapy, bone marrow transplant, corticosteroids, or radiation.

Living with multiple myeloma can be difficult because it’s a remitting and relapsing disease: periods of response to treatment and remission are followed by relapse. Generally, the definition of relapse in multiple myeloma is the reappearance of signs and symptoms of a disease after a period of improvement, while refractory means a disease is no longer responding to treatment, according to the International Myeloma Foundation.

Most patients will experience several remissions and several relapses throughout their disease course. That’s why after the initial treatment for multiple myeloma, follow-up care is essential. Maintenance therapy to reduce the risk of relapse, or catching relapse early, are essential steps to managing the disease. During regular check-ups, the following may be performed to check for signs of relapse:

• Blood and urine tests.
• Biopsies for bone-marrow evaluation.
• Imaging scans for bone evaluation.

You may also experience symptoms when you’re relapsing, which may be similar to or different than the initial onset of multiple myeloma. Symptoms may include bone pain, broken bones from a minor injury, shortness of breath, fatigue, easily bruised skin, or extreme thirst. You may not experience any symptoms. Therefore, it’s very important not to miss your check-ups.

Your treatment plan for relapsed multiple myeloma depends on how long your multiple myeloma has been in remission, the treatment you had before, how well the treatments you have had worked, and your general health. The approach might include:

• Watchful waiting (for slow-progressing, stable disease).
• The same treatment you initially had.
• A stem cell transplant.
• The combination of different therapies.
• Recommendation of a clinical trial with new therapies.

Relapsed/Refractory multiple myeloma, or RRMM, describes when multiple myeloma comes back but doesn’t respond to the same therapies that worked before. It’s important to note that there’s no standard therapy approach for patients who develop the condition.

Multiple myeloma can be difficult to cope with. Knowing that it is going to come back at some point but not knowing when is especially hard. The time between remission and relapse varies from person to person. Some people have months and others have years. Paying attention to your emotional health is critical as is talking to your healthcare provider about your situation so you know what to expect.

While there’s no sure way to lower the risk of relapse, maintaining a healthy weight, getting enough rest, abstaining from smoking, getting regular physical exercise, and eating a well-rounded diet may benefit your general health.

The post Multiple Myeloma—What Happens If It Comes Back? appeared first on Black Health Matters.

Multiple myeloma is a cancer of a person’s plasma cells, cells that fight infection and disease. This disease can weaken bones and damage organs and accounts for about 1 to 2% of all cancers diagnosed, and about 10% of all blood cancers.

Most patients will experience several remissions (when signs and symptoms of the disease are reduced) and several relapses (when the disease returns after a period of improvement) or recurrences throughout their disease course. Many are also told by their doctors they now have refractory disease, when it no longer responds to treatment. Symptoms of relapse may be similar to the initial onset of multiple myeloma, different or nonexistent.

Modern therapies have transformed multiple myeloma from a fatal disease to a chronic, manageable condition for many patients.. As with most types of cancer, early diagnosis and treatment help people live longer.

Clinical research is used for all types and stages of multiple myeloma. Many focus on potential new treatments and combination treatments to learn if they are safe, effective, and possibly better than the existing treatments. In general, these types of studies examine the following:

• New drugs or treatments
• Different combinations of existing drugs or treatments
• New approaches to radiation therapy or surgery
• New methods of treatment

Clinical research has played a major role in advancing the treatment of multiple myeloma, researchers say.  “As recently as 15 years ago, patients with multiple myeloma didn’t have many treatment options,” says Dr. Craig Cole, a hematologist at the University of Michigan Comprehensive Cancer Center in Ann Arbor, Michigan. “But thanks to clinical trials, many new treatments have been approved.”

“Multiple myeloma is twice as common in the Black community, and is twice as deadly in Black patients compared to White patients. While there aren’t specifics as to why Blacks are more likely to get multiple myeloma, it’s likely linked to a genetic cause that is the difference between the races,” says Dr. Cole.

Blacks account for 20% of multiple myeloma cases despite being 13.4% of the U.S. population and they are still underrepresented in clinical trials. Only 8.6% of patients in multiple myeloma clinical trials were Black, an unfortunate figure since it’s estimated that Blacks will represent almost 24% of cases by 2034.

“The number of African Americans enrolled in clinical trials of novel agents or treatments of multiple myeloma has been tragically low,” says Dr. Kenneth C. Anderson of the Dana-Farber Cancer Institute in Boston.  “When they have enrolled, their outcome to treatment with novel therapies has been the same or even better than other patients.”

You might decide to enroll in a multiple myeloma clinical trial/research study if:

• The treatments you’ve tried haven’t worked.
• Your cancer has come back after treatment.
• You want to contribute to cancer research and help other people with multiple myeloma.

The post The Importance of Clinical Research for Patients With Multiple Myeloma appeared first on Black Health Matters.

What is a clinical research study and why is it important?

A clinical trial, also called a clinical research study, is a carefully designed scientific evaluation of an investigational medication. Clinical trials help doctors and researchers determine if an investigational medication is safe and/or effective for use in humans to potentially treat a condition, disease, or disorder. Clinical trials are completely optional and each one has a specific set of criteria a participant must meet to join. Clinical studies, conducted by doctors and researchers, often require a large number of volunteers to participate in a single study, and sometimes thousands are needed to obtain reliable information.

What can I expect if I join a clinical trial?

If you qualify and choose to join a clinical trial, you will first sign an informed consent form (ICF). “Informed Consent” is a process of information exchange before an adult agrees to participate in research. During this process you will be asked to read the ICF, and a study doctor or member of the research team will explain all the details of the study and answer your questions. By signing the ICF you agree to volunteer to take part in the study, you understand the study procedures, risks and potential side effects, and that you can leave the study at any time, for any reason. If you don’t understand what is expected of you or what is written in the document, you should continue to ask questions and talk with the study doctor, your family, or others that you trust, until you feel you understand.

What is the purpose of the AURIGA study?

The purpose of this clinical research study is to determine the safety and efficacy of the addition of an investigational medication to standard of care maintenance treatment. The investigational medication is being evaluated in people who have multiple myeloma.

Am I eligible for the AURIGA study?

You may be able to participate in this study if you:

• Are 18 to 79 years of age
• Have a diagnosis of multiple myeloma
• Have received previous treatment for multiple myeloma and a stem cell transplant, or are planning to receive a stem cell transplant

Additional eligibility criteria will be assessed by the study doctor or staff during the screening process prior to being enrolled in the study and receiving any investigational medication. Not all individuals may qualify to participate in the research.

What can I expect if I join the AURIGA study?

If you qualify and choose to join the study and sign the informed consent form (ICF), you will be asked to attend a screening visit with the study doctor. At this visit, you will undergo tests and procedures to determine if you are a good match for continuing in the study.

• If eligible, you could be in the study for 3-4 years and visit the study doctor or clinical research staff up to 46 times.
• You will be randomly assigned to one of two study groups. This means you may either receive the investigational medication plus standard of care treatment or standard of care treatment alone.
• You will know what group you are assigned.
• Qualified patients may receive an investigational medication and some study-required medical care at no cost.

What is expected during my participation in the AURIGA study?

Your study doctor and research staff will guide you throughout your participation in the study. However, you can expect the following general expectations:

• Tell the study doctor/staff about any health problems you have during the study
• Complete your study diary and bring it to all study visits
• Come to all study visit appointments
• Ask the study doctor/staff any questions you have about the study
• Tell the study doctor/staff about any new medicine you take during the study, as well as any changes to your medicines

How do I learn more about participation in the AURIGA study?

You can talk to your doctor to find out if you are a candidate for a clinical trial. You can learn more about the AURIGA study which is posted on the Sparkcures website, click here to visit the study page.

Where can I go to learn more about Multiple Myeloma?

There are several online resources available. For further information and research support groups consider visiting the following websites. Consider asking your doctor if they can recommend local support groups near you.

• American Cancer Society’s Cancer Survivors Network: Connect with other people with cancer and their families through discussion boards, chat rooms and private CSN email addresses.
• International Myeloma Foundation’s Smart Patients Myeloma Community: Learn about available treatments and clinical trials for Multiple myeloma. Learn about the experiences of other people living with the condition, as well as the experiences of their families and caregivers.
• Cancer Hope Network: Talk or engage in a live chat with a cancer survivor who’s faced and recovered from a situation similar to yours.
• International Myeloma Foundation: You can find more support groups by visiting this website.
• Multiple Myeloma Research Foundation: Learn more about treatments and clinical trials
• SparkCures: Learn about treatment options, multiple myeloma specialists, and find available clinical trials near you.

 This article is brought to you by Janssen.

The post Newly Diagnosed With Multiple Myeloma? Learn If a Clinical Trial Is Right For You appeared first on Black Health Matters.

Black Health Matters: First, share a bit about your work.

Dr. Rose: I am a Hematologist Oncologist who specializes in treating all blood cancers except acute leukemia. Hematology is a branch of medicine that looks at blood diseases that might be benign (not cancer) or malignant (cancer). Oncologists are medical doctors who treat solid  tumors, such as breast or lung cancer.  Both hematologists and oncologists can treat what we call “liquid tumors,” or blood cancers, such as lymphoma or leukemia, and many doctors, such as myself, are trained in both hematology and oncology.

Black Health Matters: Why are you passionate about hematology oncology?

Dr. Rose: When I think back to when I was trained, most people went into some sort of specialty. Hematology oncology is what I liked because it kept me more up to date as a generalist. The blood circulates to all parts of the body, so I have to know a lot of internal medicine. In hematology oncology, many of the drugs we use to treat blood problems can affect organs in every part of the body, so that’s why general knowledge is important.

Black Health Matters: What are CLL and SLL?

Dr. Rose: Chronic lymphocytic leukemia (CLL) and small lymphocytic lymphoma (SLL) are slowly spreading types of non-Hodgkin lymphoma that start in the white blood cells (the infection-fighting cells) and affect the lymphatic system. They are essentially the same disease. When we look at specific markings on the cell—and the cells help us identify which is malignant and where they come from—CLL and SLL markers look exactly the same, but they manifest differently. CLL is mostly in the blood and SLL is mostly found in the lymph nodes.

Black Health Matters: Do CLL/SLL present with symptoms?

Dr. Rose: CLL is often a disease that doesn’t have symptoms. It’s found incidentally when a doctor does a blood test for another reason and finds there are more lymphocytes (a type of white blood cell) in the blood than there should be. Most of the people with CLL are older in age. They can also get symptoms: they can be tired, have more frequent infections, and can be anemic (have a low red blood cell count). They can also have swelling in their lymph nodes. If it’s more toward the SLL variety, they might have swelling in their groin that doesn’t go away. You can have lots of different symptoms, but with classic CLL/SLL, it often doesn’t present with any.

Black Health Matters: How is CLL/SLL usually treated?

Dr. Rose: We can make a diagnosis of CLL/SLL but need to learn information that is particular to you before we can determine how to treat it. There’s not a one-size-fits-all treatment approach.  Nevertheless, we often use what we call “targeted treatments.” which can be taken orally in the form of a pill.  Immunotherapy and chemotherapy can also be used to treat CLL/SLL.  Patients with CLL/SLL may not need any treatment at all for many years. It is a slow-growing disease that commonly only requires treatment to control symptoms.

Black Health Matters: What role do family genetics play?

Dr. Rose: CLL/SLL is not associated with a gene that is inherited. It is not a disease that typically runs in families or is passed down through generations. There are genetic alterations that can occur within the cells of the body, that are acquired or picked up as people age, and that are sometimes found in cases of CLL/SLL. “Targeted treatments” are directed against these genetic alterations.

Black Health Matters:  What advice do you have for patients and caregivers?

Dr. Rose:  I tell them that they need to make sure they’re seeing the appropriate specialist for their particular disease. I also tell them to read as much as possible. Everybody doesn’t have to have a great education, but it’s important to know the diagnosis, what indications you have for treatment (if any), and if there are any genetic markers on the CLL/SLL cells that can help determine prognosis (how well you will do).

Taking part in a clinical trial may be the best therapy for some NHL patients, according to the Leukemia & Lymphoma Society. Clinical trials are underway to develop treatments that increase the remission and/or cure rate of the disease. Click here to read more about clinical trials.

The post Hematologist Oncologist Myra Rose: What African Americans Should Know About Non-Hodgkin Lymphoma appeared first on Black Health Matters.

Non-Hodgkin lymphoma (also known as NHL or just lymphoma) is a type of cancer that begins in infection-fighting white blood cells called lymphocytes. Lymphocytes are part of the lymphatic system, a network of organs (including lymph nodes) and vessels that filters body fluids of toxins and transports infection-fighting cells throughout the body.

Lymphocytes are tasked with distinguishing normal healthy cells from potentially dangerous invaders. But in patients who develop NHL, lymphocytes become abnormal themselves, multiplying out of control and collecting in lymph nodes and other tissues.

NHL accounts for about 4 percent of all cancer cases. More than 95 percent of cases occur in adults, but certain types are common among children. NHL can be either indolent (slow growing) or aggressive (fast growing).

Survival rates for NHL vary widely, depending on the lymphoma type, stage, age of the person, and other variables. There are more than 70 distinct types of NHL, such as mantle cell lymphoma (MCL), chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL), diffuse large B cell lymphoma (DLBCL), anaplastic large cell lymphoma (ALCL), etc., and many different types of treatment depending on the type, stage, and biology of your cancer. The primary treatments for NHL include chemotherapy, targeted therapy, immunotherapy, stem cell or bone marrow transplant and sometimes radiation therapy.

For many people with aggressive (fast-growing) NHL, treatment can destroy the lymphoma—and completing treatment can be both stressful and exciting. You may be relieved to finish treatment but find it hard not to worry about the lymphoma coming back. This is a very common worry if you’ve had cancer.

For some people with indolent (slow-growing) NHL, the lymphoma may never go away completely. These people may get regular treatments with chemotherapy or other therapies to help keep the lymphoma in check for as long as possible and to help relieve symptoms. Learning to live with NHL that doesn’t go away can also be difficult and very stressful.

If you’ve been successfully treated for NHL, your follow-up schedule will depend on the type of NHL you were diagnosed with and the treatment you had. Your doctor may want to see you three or four times a year for the first couple of years.

Check-ups will become less frequent if you have no further problems. Your doctor will talk to you about the best follow-up schedule for your situation. During these check-ups, you will have a physical examination, blood tests, and possibly scans. Your doctor will also discuss any new symptoms or late effects of treatment. Between follow-up appointments, let your doctor know immediately of any health problems or new symptoms.

If you have (or have had) NHL, you probably want to know if there are things you can do that might lower your risk of the disease growing or coming back, such as exercising, eating a certain type of diet, or taking nutritional supplements.

Unfortunately, it’s not yet clear how helpful these can be. Adopting healthy behaviors such as not smoking, eating well, getting regular physical activity, and staying at a healthy weight might help, but no one knows for sure. Nevertheless, these types of changes can have positive effects on your health that can extend beyond your risk of lymphoma or other cancers.

It’s also normal to feel depressed, anxious, or worried when NHL is a part of your life. Some people are affected more than others. But everyone can benefit from help and support from other people, whether they be friends and family, religious groups, support groups, professional counselors, or others.

NHL treatments continue to improve, helping people to live longer. Each year, more people who have the disease are alive five years after diagnosis. And researchers are learning more about NHL risk factors and methods of prevention.

Taking part in a clinical trial may be the best therapy for some NHL patients, according to the Leukemia & Lymphoma Society. Clinical trials are underway to develop treatments that increase the remission and/or cure rate of the disease. Click here to read more about clinical trials.

Resources for patients—and their caregivers— living with non-Hodgkin lymphoma

• Financial assistance programs
• One-on-one nutrition consultations
• The Leukemia & Lymphoma Society’s The Bloodline with LLS podcast
• Support groups
• Caregiver support
• Other helpful organizations

*Leukemia and Lymphoma Society

The post Living With Non-Hodgkin Lymphoma appeared first on Black Health Matters.

Although systemic racism and bias in medicine are the main reasons we see differences in outcomes for Black people—and tackling these issues is critical to achieving equity—awareness and education may also help narrow the gap by promoting earlier detection and prevention.

What is non-Hodgkin lymphoma?

Non-Hodgkin lymphoma (also known as NHL or just lymphoma) is a type of cancer that begins in infection-fighting white blood cells called lymphocytes. Lymphocytes are part of the lymphatic system, a network of organs (including lymph nodes) and vessels that filter body fluids of toxins and transports infection-fighting cells throughout the body.

Lymphocytes are tasked with distinguishing normal healthy cells from potentially dangerous invaders. But in patients who develop NHL, lymphocytes become abnormal themselves, multiplying out of control and collecting in lymph nodes and other tissues.

According to the American Cancer Society, non-Hodgkin lymphoma is one of the most common cancers in the United States, accounting for about 4% of all cancers. The health organization estimates that in 2022, about 80,470 will be diagnosed with NHL (including both adults and children) and 20,250 will die from this cancer (11,700 males and 8,550 females).

There are many different types of non-Hodgkin lymphoma, and they are categorized by how the cells look under a microscope and how they behave. Most types of NHL are either B-cell lymphoma or T-cell lymphoma. According to the American Cancer Society, B-cell lymphomas make up most (about 85%) of the non-Hodgkin’s lymphomas in the U.S. B-cell and T-cell lymphomas can further be divided into one of two categories based on how quickly the cancer cells are growing: aggressive (fast-growing) or indolent (slow-growing).

How do you know if you have non-Hodgkin lymphoma?

Signs and symptoms of non-Hodgkin’s lymphoma may include:

• Swollen lymph nodes in your neck, armpits, or groin (a main symptom that leads to an NHL diagnosis)
• Fever
• Night sweats
• Unexplained weight loss
• Persistent fatigue (feeling very tired)

What are the risk factors for developing non-Hodgkin lymphoma?

NHL can occur at any age. In fact, it is one of the more common cancers among children, teens, and young adults. Still, the risk of developing NHL increases throughout life, and more than half of patients are 65 or older at the time of diagnosis. The aging of the American population is likely to lead to an increase in NHL cases during the coming years. In the U.S., Whites more likely than Blacks and Asian Americans to develop NHL. Worldwide, NHL is more common in developed countries, with the U.S. and Europe having some of the highest rates. Some types of lymphoma are linked to certain infections that are more common in some parts of the world.

The exact cause of NHL is not known, but there are risk factors that may increase the likelihood of developing the disease. Factors affecting people’s risk of developing NHL have been studied extensively. Some of these factors are immune disorders, certain medicines, infections, lifestyle, family history, and occupational factors. For example, the risk of developing lymphoma and other cancers may be higher for butchers, car repair workers, gasoline station workers, agricultural and chemical workers, radiation-exposed groups such as uranium mine workers, nuclear industry workers, nuclear test site workers and “downwinders” (residents of cancer “hot spots” or other contaminated areas), according to this study.

How can I reduce my risk of developing non-Hodgkin lymphoma?

In 2008-2009, The President’s Cancer Panel issued “Reducing Environmental Cancer Risk: What We Can Do  “ with recommendations that can be taken to reduce cancer risk related to environmental contaminants, excess radiation, and other harmful exposures. Additionally, viral infections (particularly HIV) can lead to lymphoma. Avoidance of infection and high-risk practices is advisable. It is also recommended that you eat a healthy, nutritious diet, remain physically active, and exercise regularly.

What should I do if I suspect I might have non-Hodgkin lymphoma?

First of all, please keep in mind that the signs and symptoms of NHL are also associated with a number of other less serious diseases. Even if you have all the symptoms listed above, you may not have lymphoma or cancer. Nevertheless, if you have signs or symptoms that suggest the possibility of NHL, you should be seen by your doctor as soon as possible. If the doctor suspects lymphoma, additional tests, and possibly a tissue biopsy, may be ordered to make a diagnosis.  You may also be referred to a blood cancer specialist called a hematologist-oncologist, which is the type of doctor who treats lymphoma.

What treatments are available for non-Hodgkin lymphoma?

Several NHL treatments are available. Which treatment or combination of treatments is best for the patient will depend on the particulars of their lymphoma, such as the types of cells involved and how fast the lymphoma is growing (whether it is indolent or aggressive). A doctor also considers the patient’s overall health and preferences. If a person’s lymphoma appears to be slow-growing (indolent) and does not cause symptoms, treatment might not be needed right away. Instead, a doctor may recommend regular checkups every few months to monitor the patient’s condition and whether the cancer is advancing. If a patient’s NHL is fast-growing (aggressive) or causes symptoms, a doctor may recommend treatment right away. Options may include chemotherapy, immunotherapy, targeted drug therapy, bone marrow transplant, and radiation.

Taking part in a clinical trial may be the best therapy for some NHL patients, according to the Leukemia & Lymphoma Society. Clinical trials are underway to develop treatments that increase the remission and/or cure rate of the disease. Click here to read more about clinical trials.

The post Why African Americans Should Discuss Non-Hodgkin Lymphoma appeared first on Black Health Matters.

We Have What? hATTR Amyloidosis: My Family’s Journey

Every so often an opinion poll goes around on social media asking if folks would want to know in advance if they carry genetic material that could cause a fatal disease. Most people say no. Some of these diseases are terrifying, and advanced knowledge about something for which there is no cure? No thanks.

I’ve been a health reporter for years and know full well that early detection is crucial. But I’ve never taken any of these polls. Honestly, I’ve never felt the need.

That stance was called into question when my mom contracted pneumonia.

While in the hospital being treated, her medical team noticed fluid buildup caused by a leaking valve. A cardiac catheterization showed no blockage in her arteries (“she has the arteries of a 17-year-old,” one cardiologist said in amazement). A trans-esophageal echocardiogram was equally uninformative. Yes, her mitral valve was leaking. No, they didn’t know why.

But maybe she was a candidate for a relatively new procedure to repair the valve. If so, she’d be good as new. To prepare for the new procedure, she needed an MRI.

The MRI showed Mom’s heart muscle was thicker than it should be. This led to a heart biopsy. And finally, a diagnosis: something called amyloidosis. My mom struggled to pronounce it for a while. It could cause heart failure, they said.

We learned that there are several types of amyloidosis, so we needed to find out which type of amyloidosis she had. There is light chain amyloidosis, which sounded suspiciously akin to a blood cancer to my health journalist’s ears. I couldn’t get a straight answer about this, even when the recommended therapy for this type of amyloidosis included chemotherapy. There is wild-type ATTR amyloidosis, which the doctors said typically occurs later in life. And hereditary ATTR (hATTR) amyloidosis, a genetic and rare form of the disease that affects about 50,000 people worldwide with about 3-4% of African Americans carrying a TTR gene variant (i.e., mutation) called Val122Ile (V122I).

There were a lot of tests involved to determine which kind of amyloidosis she had. One night she had to produce nine huge tubes of blood. Then there was the three-gallon jug to collect a week’s worth of urine; this was to test Mom’s kidneys. She was also scheduled to have a bone marrow biopsy and a body X-ray.

There were also lots of questions about family history. Both my maternal grandparents suffered from congestive heart failure (CHF). My grandmother, who passed away at age 76, had diabetes, and though the link between diabetes and heart disease wasn’t discussed with her during her lifetime, CHF was listed as the cause of death on her death certificate. Granddaddy, once a smoker, battled emphysema and CHF the last two years of his life. Though he’d quit smoking before I was born, and had been nicotine free for nearly 40 years, his tobacco habit exacted a high price in the end. When he died at age 85, there’d been no mention of amyloidosis.

Knowing Family Medical History Is Key

While we waited for test results, a genetic counselor charted our family medical tree as best as she could. But as in many African American families, figuring out the tangled branches is a tall order. Even before being diagnosed with a disease we’d never heard of, there were gigantic holes in our family health history.

There’s the great-aunt who blamed her daughter’s death from asthma on a blister. High blood pressure and diabetes had run roughshod through generations of relatives, but nobody talked about the connection to heart disease. Scads of ancestors died without ever sharing their diagnoses. And this is all without taking into account the limitations 400 years of slavery and the difficulty African American families have in gathering complete medical knowledge.

Fortunately, blood test results solved the four-month-long mystery. My mom tested positive for a TTR gene variant associated with hATTR amyloidosis less than 12 hours before her bone marrow biopsy, rendering that painful test unnecessary.

I must note a couple of things so I don’t sound whiny and ungrateful: 1) Mom had been through so many tests—some invasive, a few pretty painful—so we were relieved to have a name for what ailed her, and 2) though four months of tests and questions seemed like a lot to us, her diagnosis came relatively quickly. hATTR amyloidosis often stumps folks in the medical community because its symptoms mimic so many other conditions, sometimes leaving patients suffering for years without a diagnosis.

It’s in the Genes
Our genetic counselor stressed the importance of understanding how hATTR amyloidosis can be passed down through families. Genetic counseling can help folks understand their chances of developing the condition, as well as make them familiar with the testing process and implications of a diagnosis. Genetic counselors also can help people understand the issues related to genetic testing—from personal risk to possible insurance impact— and can help determine if a genetic test may be right for them.

hATTR amyloidosis is caused by a variant or change in the TTR gene. This gene change affects the function of a protein called transthyretin (TTR). The condition is inherited in an autosomal dominant fashion, meaning a person needs to inherit only one copy of the affected gene from one parent in order to develop the disease. Everybody gets two copies of the TTR gene, one inherited from each parent. When one parent carries a variant in the TTR gene, each child will have a 50 percent chance of inheriting that variant. However, inheriting the TTR gene with a variant does not necessarily mean that he or she will develop hATTR amyloidosis.

My mom, one of six children, would need to discuss this with her siblings in the hopes they’d all get tested. She’d done the heavy lifting; they would need to have only a blood or saliva test to find out if they’d inherited the variant.

Our genetic counselor made it even easier. She supplied us with detailed information about hATTR amyloidosis and included geneticists in every city where family members reside. She also noted that a family member can inherit the TTR gene with a variant but having the variant does not mean hATTR amyloidosis is a given. Put simply: A person can carry the variant without ever developing the disease.

Still, only one of Mom’s siblings—her youngest sister—was tested (she doesn’t have the variant, so her only child, a son, doesn’t need the test). The remaining brothers and sisters have dragged their feet about testing, even though they all have young adult grandchildren on the verge of building lives and families. This information could be vital in their decision to have children—or not.

As much as I hate needles, I was tested last fall. What’s that saying? Knowing is half the battle. While I’m not showing any symptoms of hATTR amyloidosis, I did test positive for the genetic variant. The way I see it, my dark cloud is lined with a double layer of silver: I don’t have children, so this branch of the variant stops with me, and by knowing the results now, I’m better prepared should I start seeing signs of this disease down the road.

Genetic Testing 101
One option for genetic testing is through the Alnylam Act® program. Alnylam Pharmaceuticals is sponsoring no-charge, third-party genetic testing and counseling for individuals who may carry one of the 120 or more gene variants known to be associated with hATTR amyloidosis. The Alnylam Act program was created to provide access to genetic testing and counseling to patients as a way to help people make more informed decisions about their health. While Alnylam provides financial support for this program, tests and services are performed by independent third parties. Healthcare professionals must confirm that patients meet certain criteria to use the program. Alnylam receives de-identified patient data from this program, but at no time does Alnylam receive patient-identifiable information. Alnylam uses healthcare professional contact information for research and commercial purposes. Genetic testing is available in the U.S. and certain other countries. Genetic counseling is available in the U.S. Healthcare professionals or patients who use this program have no obligation to recommend, purchase, order, prescribe, promote, administer, use or support any Alnylam product. In addition, no patients, healthcare professionals, or payers, including government payers, are billed for this program.

In addition to genetic tests ordered by your doctor, direct to consumer genetic services, like 23andMe, are available for purchase to help you learn more about how genetics may influence your risk for certain hereditary conditions. In April 2019, 23andMe released a new Hereditary Amyloidosis (TTR-Related) Genetic Health Risk report, supported in part by Alnylam, that informs a person if he or she is a carrier of one of the 3 most common TTR variants in the U.S. This report does not identify all TTR variants linked to hATTR amyloidosis, nor does it diagnose hATTR amyloidosis or any other health conditions. 23andMe customers are encouraged to speak with a healthcare professional if they believe they may have hATTR amyloidosis.

For more information about hATTR amyloidosis and genetic testing, please visit Alnylam’s The Bridge® and Alnylam Act

For additional information and support check these resources:

• Amyloidosis Foundation: amyloidosis.org
• Amyloidosis Support Groups: amyloidosissupport.org
• Amyloidosis Research Consortium: arci.org
• The Foundation for Peripheral Neuropathy: foundationforpn.org/
• National Organization for Rare Disorders: rarediseases.org
• Global Genes: globalgenes.org

Alnylam Pharmaceuticals does not endorse and is not responsible for the content on sites that are not owned and operated by Alnylam Pharmaceuticals.

Content sponsored and provided by Alnylam Pharmaceuticals. Intended for U.S. audiences only.

The Bridge and Alnylam Act are registered trademarks of Alnylam Pharmaceuticals, Inc. © 2022 Alnylam Pharmaceuticals, Inc. All rights reserved.

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The post hATTR Amyloidosis: African American Community Disproportionately Affected By A Rare, Inherited, Rapidly Progressive Disease appeared first on Black Health Matters.

I expected a splint or maybe a cast, but the doctor insisted on running routine blood and urine tests, which showed less than routine results. I was told I had elevated protein levels and was referred to a hematologist, urologist, nephrologist, and oncologist to learn more. After a few months of more tests and questions, my hematology and oncology team officially diagnosed me with multiple myeloma, a blood cancer, in January 2018. 

A lifeline of support for me was The Leukemia and Lymphoma Society’s Information Resource Center (IRC) where I received free one-on-one educational resources from trained oncology staff. Through the IRC, I learned more about my condition and lifestyle needs from dietitians, oncology social workers, nurses, and other health educators. 

It was through LLS’ IRC I learned that Black Americans have at least twice the incidence of myeloma as any other race or ethnicity. Black men have the highest risk of anyone. We also receive less care and more frequently experience treatment delays. I was lucky enough to avoid these issues. Cancer is an incredibly expensive disease, and while I had the insurance to cover these charges, others do not. 

LLS has made it part of their mission to provide access to care for Black communities through Myeloma Link: 

• Myeloma Link is a grassroots effort that directly connects Black patients and caregivers to free myeloma education, information, support, and access to care.   
• Community Outreach through myeloma awareness community education programs, patient education programs, and partnerships with senior centers and libraries help LLS reach these communities to share these critical health resources. 
• Caregiver Support is offered through LLS. As my caregiver, my wife also called the IRC with questions about my treatment. Being able to talk one-on-one with experts helped us both feel empowered and encouraged about my treatment. 

LLS was critical to my treatment and support plan, and now that I’m in remission, I’ve joined their mission to address health equity in Black communities.  In 2019, I became a community outreach volunteer, which allowed me to interact with families going through blood cancer diagnoses and guide them to LLS. In 2021, I joined LLS staff as a Myeloma Link Community Outreach Manager. My role helps bring LLS’ myeloma support and resources to the Black community.  

When working with patients and their families, I always stress the importance of people getting accurate and medically backed information. Folks should first focus on listening to their care teams and providers, then clarifying any further questions or confusion with the free education available from trusted sources like the blood cancer experts at LLS. I strive to guide patients toward evidence-based information. 

If you or someone you love is struggling with myeloma, call us at 1-844-955-LINK or email MyelomaLink@LLS.org to get free support services and education. 

The post Myeloma Support and Resources From The Leukemia & Lymphoma Society appeared first on Black Health Matters.

So, what exactly is multiple myeloma and why do these disparities exist? Multiple myeloma is a type of cancer that develops in plasma cells in bone marrow—the soft, sponge-like tissue in the center of bones.

Plasma cells are white blood cells that secrete antibodies that help our bodies fight off bacteria, viruses, infection, and disease. Multiple myeloma occurs when plasma cells become cancerous and grow out of control so much so that they outnumber normal cells.

Individuals diagnosed with multiple myeloma can either have primary refractory myeloma (multiple myeloma that does not respond to initial treatment) or relapsed and refractory myeloma (multiple myeloma that initially responds to treatment but then stops responding to it after a time).

If you have been diagnosed with relapsed and refractory myeloma, you may want to consider participating in a multiple myeloma clinical study. By volunteering as a study participant, you’ll have access to healthcare professionals that will answer your questions and provide support to help you understand for which investigative treatment you may qualify.

Genetic disparities

Multiple myeloma is the most common type of blood cancer that affects African Americans. One factor that can explain why African Americans are at a higher risk of developing multiple myeloma, is genetics. For example, the pre-myeloma condition MGUS (monoclonal gammopathy of undetermined significance) is found to be more common in African Americans. MGUS is a condition in which a higher-than-normal level of an abnormal protein is present in the blood. MGUS is mostly benign, but it can develop into multiple myeloma.

A recent study sampled and compared bone marrow DNA from patients of African and European ancestry who had been diagnosed with a monoclonal gammopathy. The study found that those with 80% or greater African ancestry were also more likely to have certain cytogenetic abnormalities that are observed in multiple myeloma. Research is still ongoing, however, the findings in this study may help explain why multiple myeloma shows up differently in African Americans than in white Americans due to certain genetic markers.

African Americans who have been diagnosed with multiple myeloma are also more likely to have a genetic mutation called translocation—which is an abnormal change in the DNA where chromosomes break off and connect to other chromosomes. Translocations may contribute to the aggressiveness of multiple myeloma and certain translocations are linked to poorer outcomes.

Because multiple myeloma shows up differently in African Americans, it’s critical for African Americans to be represented in clinical studies. African American participation is valuable because it allows researchers and healthcare professionals to further understand multiple myeloma in African Americans and develop potentially better treatment options for them in the future. Without participation, African Americans will continue to be at a disadvantage in health outcomes.

Healthcare disparities

Healthcare disparities and a lack of representation in research studies contribute to higher fatality rates in African Americans. What does this look like? Access to healthcare is a major contributing factor to health outcomes and African Americans account for 23.1% of uninsured adult persons nationwide. In addition, African Americans are more likely to experience a delayed diagnosis and are less likely to be offered novel treatment options and resources.

To address these disparities, African American representation is needed in multiple myeloma disease research. Today, only 6% of multiple myeloma research participants are African American, yet African Americans make up 20% of all multiple myeloma cases in the U.S.

To see if you’re eligible for a study on multiple myeloma, visit SparkCures.

The post African Americans at Higher Risk of Developing Multiple Myeloma Cancer appeared first on Black Health Matters.

Like most blood cancers, multiple myeloma starts developing in the plasma cells of the body’s bone marrow, the spongy tissue in the center of most bones, and spreads to other parts of the body. Multiple myeloma can be either primary refractory myeloma, which means it does not respond to treatment, or relapsed and refractory myeloma which means that the disease will go through phases where it responds or does not respond to treatment or when a person with myeloma experiences a progression of myeloma within 60 days of receiving the last dose of treatment.

African Americans are twice as likely to develop multiple myeloma than other ethnicities and are faced with greater mortality rates. In addition, studies have shown that multiple myeloma is different in African Americans than in white Americans. For example, African Americans on average have an earlier age of onset of multiple myeloma compared to white Americans. Research is ongoing to find out why these disparities exist. However, genetic predispositions to pre-myeloma underlying conditions such as MGUS (monoclonal gammopathy of undetermined significance)—a benign condition in which the body produces abnormal proteins in the blood—may explain why African Americans are more at risk for developing multiple myeloma.

Increased survival rates and better health outcomes for multiple myeloma patients are often the result of autologous stem cell transplants, newer drugs, using these newer drugs in combination, and early care. Despite being more likely to develop multiple myeloma and experiencing lower survival rates, African Americans only make up 6% of all multiple myeloma clinical study participants.

Disparities in health outcomes for African Americans living with multiple myeloma can be attributed to several factors. African American patients are significantly less likely to be offered a stem cell transplant, and experience extended average time to first-line therapy initiation which impacts the likelihood of early care. African Americans are also less likely to be referred as patients for clinical studies by their healthcare providers. This could be because of poor patient-provider relationships, conscious and unconscious bias, cultural insensitivity, and a lack of available minority investigators. In addition, socioeconomic barriers such as transportation, cost, and access to healthcare limit African Americans’ access to timely and quality healthcare.

While disparities in multiple myeloma diagnoses and mortality rates are evident in African American health outcomes and multiple myeloma remains incurable, currently approved treatment options are available and can aid in prolonging or sustaining remission.

If you have been diagnosed with multiple myeloma, you may be eligible to participate in a multiple myeloma clinical study. As a study participant, you may have access to investigative drugs and healthcare professionals that will be able to answer questions you may have about the study.

To see if you’re eligible for a study on multiple myeloma, visit SparkCures.

The post For African Americans, Health Disparities in Multiple Myeloma Can Be Addressed by Greater Participation in Research Studies appeared first on Black Health Matters.

So what should you know about this disease? From what symptoms to look out for to how to influence the care you receive after a diagnosis, you will learn everything you need to know in our “Multiple Myeloma: Don’t Guess” session.

Held during our recent Black Health Matters Kappa Summit and moderated by Bill Whyte (Head, Janssen North America Pharmaceuticals, Strategic Partnerships), this discussion featured the expertise of Dr. Brandon Blue, Dr. Bishop Horace Smith and patient advocate, Dr. Tiffany Williams.

According to Dr. Blue, the best way to learn about this disease is to talk about it. Let’s start with symptoms. Early signs of multiple myeloma include severe fatigue, low white blood cell count, anemia and in severe cases, bone fractures.

But you shouldn’t wait until you notice symptoms to check in with your doctors. Dr. Smith encourages African Americans to get regular check-ups so that if there is a diagnosis, the treatments can start earlier. “Often, we wait until we have symptoms to get a diagnosis,” he explained.

African Americans are getting multiple myeloma at younger ages, with higher rates of diagnosis, as well as having the highest rates of mortality. They’re also more likely to be misdiagnosed with renal dysfunction, anemia, bone fracture, and hypercalcemia. Doctors often brush off key symptoms as “typical” health issues that African Americans experience instead of doing the bone marrow biopsy test to confirm if it is multiple myeloma.

Though these disparities exist, communicating well with your doctor can play a role in receiving the care you deserve. Fortunately, there are various treatments available including chemotherapy, stem cell transplantation and anti-cancer drugs like Darzalex.

Even better, multiple myeloma patients can live in remission for many years. For example, stem cell transplant is one of the best therapeutic options available, but black people are not receiving this treatment at the same rates white people are. So it’s beneficial to ask your doctor about options, educate yourself, and get a second opinion as well.

“I am so encouraged and excited by the advancement in treatment because I know that this is an incurable cancer that I am living with and one day I might need more treatment,” shared Tiffany Williams, who was diagnosed with multiple myeloma at 46.

Want to learn more? Watch the full session in the video below.

This article is brought to you by Janssen.

The post What You Need to Know to Take the Guesswork Out of Multiple Myeloma appeared first on Black Health Matters.

It is common for someone with MM to go through several of these cycles. The time between receiving medicine, response, and relapse—as well as the number of cycles—can vary from person to person.

As the symptoms and needs of the person you’re caring for change, your role as a caregiver may also change. But there are some things you can do consistently to help, no matter where in the cycle the person’s MM may be:

• Understand how the disease can impact the person with MM physically. Below are the most common medical issues associated with MM and the medicines for it. If the person you’re caring for experiences any of these symptoms, contact his or her healthcare team.

• Keep track of all the medicines the person with MM is taking. Medicines used to treat MM can also cause changes to the person’s health.
• Keep an open dialogue with the person with MM. Make sure the person is comfortable talking with you about how he or she is feeling.
• Keep a running list of changes in health and other issues. Bring this list to each doctor appointment to discuss anything of concern. It’s important to be open and honest about any changes the person is going through, so the healthcare team can provide the best care and medicine for MM.
• Talk with the person’s healthcare team about the options available at each stage in the journey. That way, you can stay informed and educated about his or her care and become an active participant in making decisions.
• Help the person with MM stay as healthy as possible. It’s important to encourage people with MM to eat and drink right, rest, and reduce physical activity. To reduce the risk of infection, people with MM should limit contact with sick people and maintain personal hygiene. As MM progresses, you will also likely need to help with more everyday tasks.

This article is brought to you by Janssen.

The post Caring for Someone With Multiple Myeloma appeared first on Black Health Matters.

In people with Multiple myeloma, however, cancerous plasma cells grow uncontrolled, taking up real estate normally occupied by healthy blood cells. This proliferation of cancer cells produce abnormal proteins that lead to complications, including compromised kidney function, brittle bones, anemia, neuropathy, fatigue, fractures and even death.

If you don’t know much about multiple myeloma, it’s because it accounts for only 2 percent of all cancers. But as you may expect, multiple myeloma, like many other diseases, hits Black folks harder. It is the most common blood cancer for us, and we account for about 20 percent of all patients living with this disease. We are often younger than our white counterparts at diagnosis, and we are two to three times more likely to die of the disease.

So why do we bear the brunt of this cancer? Though experts don’t know for sure—there’s some thought that African Americans may have a genetic predisposition to the mutations that cause multiple myeloma—what is clear is that we typically present at a later stage of the disease.

Multiple myeloma doesn’t “happen completely brand new,” said Neha Korde, M.D., an assistant professor in the multiple myeloma department of the Memorial Sloan Kettering Cancer Center at the recent 2021 Black Health Matters Winter Summit.

In fact, this cancer is always preceded by a more benign condition, Monoclonal gammopathy of undetermined significance, or MGUS. People diagnosed with MGUS are usually just watched by doctors as the condition doesn’t cause the organ damage multiple myeloma does.

This is “important,” Korde said, “because it implies it can be caught early and tracked along the way.” If the disease is caught earlier, in the MGUS stage, the outcome is better than if someone is diagnosed with full-blown multiple myeloma.

Key, Korde said, is education. “Multiple myeloma is considered incurable, but it’s very treatable. Therapy takes a multidisciplinary approach that begins and ends with knowledge.”

For more information on multiple myeloma and the treatment options available, visit cancer.org.

This article is brought to you by Janssen.

The post Multiple Myeloma – More Common in Blacks appeared first on Black Health Matters.

At the recent Black Health Matters Winter Summit, Dr. Neha Korde of the Memorial Sloan Kettering Cancer Center, discussed Multiple myeloma and the 4 pillars of treatment available.

Today, Multiple myeloma is considered incurable, but it’s very treatable” says Korde. That multidisciplinary therapy approach is built from what Korde calls, the Four Pillars of Treatment.

1. Patient advocacy. Community forums, resources and peer groups are important to getting knowledge out.

2. Access to care. Another reason African Americans fare worse with Multiple myeloma is due to delays in treatment. “Thirty-one percent of African American patients underutilize injection therapies,” Korde said. “This may be because of a lack of access to care.” but when we start therapy earlier, our survival outcomes are often better than that of other races with Multiple myeloma.

For this reason, Korde suggests patients find centers with novel treatments. “Start with your local oncologist,” she said. She also recommends seeking academic centers doing research and organizations such as the International Myeloma Foundation and the Multiple Myeloma Research Foundation, which can help patients find experts. “It takes a village to treat myeloma patients,” she said. “High level expert care is really going to help you.”

3. State of the art diagnostics. Technology has improved detection methods, Korde said. “Multiple myeloma survival outcomes are improving,” she said. “ [with early diagnosis…] Patients are living a lot longer compared to just a couple of decades ago.”

4. Immunotherapy. “We’re using immunotherapies in clinical trials, which is another reason why I recommend patients seek care in a research center,” Korde said, though she realizes black patients are underrepresented in clinical trials. Research shows only about 4 percent to 6 percent of clinical trial participants are African Americans. “Trials are necessary for scientific discovery and research. They really help your doctors help you.”

Next Steps in Multiple Myeloma Therapies
“It’s an exciting time for Multiple myeloma treatment,” Korde said. “We’re looking at CAR-T cells and how can we engage the immune system to attack multiple myeloma.”

If someone has received an MGUS or Multiple myeloma diagnosis, Korde had this advice: “Keep asking questions of your doctors. Empower yourself with knowledge.”

This article is brought to you by Janssen.

The post New Multiple Myeloma Treatment Options Provide Hope appeared first on Black Health Matters.

Unfortunately, the symptoms including bone pain, mental fogginess, excessive thirst may develop slowly over time and don’t usually appear until the disease reaches an advanced stage. In some cases, the disease is only discovered during a routine blood test or a test to diagnose another condition.

So how do you know you’re at risk? According to the American Cancer Society, there are a few factors that may increase your chances of developing Multiple myeloma. They include the following:

AGE
The risk of Multiple myeloma increases as people age. Less than 1 percent of cases are diagnosed in those younger than 35. Most people diagnosed with Multiple myeloma are 65 or older.

GENDER
Men are a little bit more likely to develop this form of cancer than women.

RACE
Multiple myeloma is twice as common—and twice as deadly—in Black Americans. Additionally, the incidence of conditions associated with the development of myeloma (including monoclonal gammopathy of undetermined significance or MGUS) is high in Black Americans.

OBESITY
An American Cancer Society study found being overweight or obese increases the chances of developing myeloma. African Americans, especially women, carry the biggest obesity burden of all the populations in this country.

FAMILY HISTORY
Multiple myeloma appears to run in some families. People who have a parent or sibling with the disease are four times more likely to get it. That said, most patients have no relatives with the disease, so this accounts for a few cases.

RADIATION
Exposure to radiation (even at lower levels) may also increase the risk of Multiple myeloma, though experts say this accounts for only a small number of cases.

OTHER PLASMA CELL DISEASES
Many people with monoclonal gammopathy of undetermined significance (MGUS) or solitary plasmacytoma will eventually develop Multiple myeloma.

Now that you know the risks, there is a silver lining if you do develop the disease. People with Multiple myeloma are living longer than ever before thanks to new treatments including stem cell transplant and gene therapy.

This article is brought to you by Janssen.

The post Are You at Risk for Multiple Myeloma? appeared first on Black Health Matters.

Learn as much as you can about Multiple myeloma. Making informed decisions about your care can make you feel more in control of the situation. Ask your doctor about available treatment options and the benefits and risks of each. You can also find additional information at your local library or online, such as on the National Cancer Institute website.

Maintain a strong support system. Let your family and friends know you need emotional support. Consider joining a support group for people coping with cancer, where you can learn about strategies others have used to successfully cope with sadness and anxiety. You might even make new friends, which could have a positive impact on your well-being.

Ask your doctor if he or she can recommend cancer support groups in your area. Consider online support groups as well including the following:

• American Cancer Society’s Cancer Survivors Network: Connect with other people with cancer and their families through discussion boards, chat rooms and private CSN email addresses.
• International Myeloma Foundation’s Smart Patients Myeloma Community: Learn about available treatments and clinical trials for Multiple myeloma. Learn about the experiences of other people living with the condition, as well as the experiences of their families and caregivers.
• Cancer Hope Network: Talk with a cancer survivor. Talk with or engage in a live chat with a cancer survivor who’s faced and recovered from a situation similar to yours.
• You can find more support groups by visiting the International Myeloma Foundation website.

Take care of yourself. Cancer treatment can put a lot of stress on your mind and body, so it’s important to minimize stress in other areas of your life. Prevent or reduce stress by adopting or continuing to practice healthy habits:

• Eat a healthy diet.
• Get lots of rest.
• Take part in activities you enjoy.
• Spend time with people you care about.
• Exercise. It can raise your energy level and help you feel better. Make sure to talk to your doctor before you begin an exercise program.

What if emotional side effects persist? If your sadness doesn’t fade or worsens over time or if it starts to get in the way of your daily life, you may be experiencing depression, which may require treatment. Tell your doctor if you have any of the following symptoms persisting most of the day, nearly every day:

• Feeling sad, empty or worthless
• Feeling irritable, frustrated or angry over small matters
• Loss of interest or pleasure in activities you used to enjoy
• Difficulty falling or staying asleep, or sleeping too much
• Lack of energy even for small tasks
• Excessive worrying that may be accompanied by compulsive behaviors, such as pacing and hand-wringing
• Slowed ability to think, speak or move your body
• Thinking obsessively about past failures, or blaming yourself for things you couldn’t control
• Trouble concentrating, making decisions and remembering things
• Thoughts of suicide
• Headaches, back pain or other physical problems with no physical cause

If you have depression, your doctor might prescribe medication to help manage your symptoms. He or she may also suggest you see a therapist for additional support.

This article is brought to you by Janssen.

The post How to Cope With a Multiple Myeloma Diagnosis appeared first on Black Health Matters.

Antoinette Howard, Nashawn’s mom, made an appointment with his primary care provider at Briarwood. After a quick evaluation his doctor sent him to the emergency room because she wasn’t comfortable with how he looked. He was immediately taken back for blood work that showed his hemoglobin, a protein that helps transport oxygen in the blood, was low. In fact, his levels were 2.4 when the normal low is 5. Even more alarming, his white blood cell count was 88,000. A normal range is between 4,000 and 11,000. 

“We knew it was something serious when his primary care doctor sent him to the emergency room but we didn’t know how serious it was,” Howard says. “My husband was trying to keep me from getting too stressed out by making me go to work against my better judgment. He called me and told me what his blood work showed and when I heard the diagnosis, I immediately left to go to the hospital.” 

In July 2018, the results indicated cancer and a diagnosis of acute lymphoblastic leukemia was made. Treatments would begin, but Nashawn wasn’t responding to them. To figure out why, Rajen Mody, M.D., a pediatric oncologist at C.S. Mott Children’s Hospital, did gene sequencing of Nashawn’s tumor.

“He presented like any other patient with leukemia, but I quickly realized there might be something else at play because he had a poor early response to treatment,” Mody says. “The genetic testing showed Nashawn had high risk cancer gene features.” 

The features of interest were an unusual genotype: mutations found on two of Nashawn’s genes, NRAS and FLT3. This genotype, which affected how he responded to treatment, is a perfect example of why sequencing minority children is critical. Kids like Nashawn may not always get necessary or lifesaving medical treatment early.

According to Mody, survival rate for African American children are 15 percent less than their Caucasian counterparts. Why is that? Is it that minority children, generally, have less access to hospitals with certain cutting-edge research technologies? When technology is available, is it being offered to them an equal amount of times it’s being offered to a Caucasian child? Is there an adverse biological component?

It’s difficult to figure out why the survival rate is lower when minority gene samples make up such a small proportion of the sequencing pool. “In pediatric cancer, only 8 percent to 10 percent of the gene sequencing pool is made up of minority samples,” Mody says. “These numbers should be closer to 30 percent to 40 percent.” 

These alarming statistics inspired Mody to design a multi-institutional project that is sequencing a multi-ethnic cohort of pediatric cancer patients like Nashawn from Ann Arbor, Detroit and Flint. 

“A cancer diagnosis on its own is overwhelming for a family so you don’t want any other factors to work against them and their child’s medical journey,” Mody says. “Every child deserves the best fighting chance, and it may start with gene sequencing.”

The nine months after Nashawn’s diagnosis were a whirlwind. He started with chemotherapy infusion treatments three times a week. The hope was that over time, the treatments could be reduced to twice a week, once a week, every other week and so on. Part of his treatment plan, like shots in the arm, could be done at home. Nashawn spent a lot of time inpatient for treatments along with an allergic reaction to the chemotherapy that he was admitted for.

The road to recovery, like any medical journey, can feel like a rollercoaster ride. Luckily, Nashawn was responding to treatments and nearing the end of nine months, Howard and the care team discussed a bone marrow transplant.

“There was a 17 percent chance Nashawn’s brother would be a perfect match, and by the grace of God he was,” Howard says. The transplant took place in April 2019.

“When you discuss worst-case scenarios, you expect it and can prepare as much as possible” Howard says. “But post-transplant, he was doing great. Instead of his numbers fluctuating as expected, they just kept going up.” 

He was released from the hospital five days after the transplant. Now, Nashawn is 11 years old and is doing well in the maintenance phase of his treatment plan. He even started sixth grade online this fall. 

With a $592,100 grant from the Children’s Hospital of Michigan Foundation for Mody’s project and support from Michigan Medicine and the Chad Carr Pediatric Brain Tumor Center, other minority children may have an outcome like Nashawn’s more often.

“Nashawn’s case is incredible,” Mody says. “It’s because of kids like him that studying genetic and socioeconomic differences that may contribute to cancer outcomes is critical. These factors will lay the groundwork for creating the best treatment plans for different populations.”

From Michigan Medicine

The post We Need More Gene Sequencing in Minority Children appeared first on Black Health Matters.

People who fit this description are more likely to die from COVID-19 than any other group in the country.

They are perishing quietly, out of sight, in homes and apartment buildings, senior housing complexes, nursing homes and hospitals, disproportionately poor, frail and ill, after enduring a lifetime of racism and its attendant adverse health effects.

Yet, older Black Americans have received little attention as protesters proclaim that Black Lives Matter and experts churn out studies about the coronavirus.

“People are talking about the race disparity in COVID deaths, they’re talking about the age disparity, but they’re not talking about how race and age disparities interact: They’re not talking about older Black adults,” said Robert Joseph Taylor, director of the Program for Research on Black Americans at the University of Michigan’s Institute for Social Research.

A KHN analysis of data from the Centers for Disease Control and Prevention underscores the extent of their vulnerability. It found that African Americans ages 65 to 74 died of COVID-19 five times as often as whites. In the 75-to-84 group, the death rate for Blacks was 3.5 times greater. Among those 85 and older, Blacks died twice as often. In all three age groups, death rates for Hispanics were higher than for whites but lower than for Blacks.

(The gap between Blacks and whites narrows over time because advanced age, itself, becomes an increasingly important, shared risk. Altogether, 80 percent of COVID-19 deaths are among people 65 and older.)

The data comes from the week that ended February 1 through August 8. Although breakdowns by race and age were not consistently reported, it is the best information available.

Mistrustful of Outsiders

Social and economic disadvantage, reinforced by racism, plays a significant part in unequal outcomes. Throughout their lives, Blacks have poorer access to health care and receive services of lower quality than does the general population. Starting in middle age, the toll becomes evident: more chronic medical conditions, which worsen over time, and earlier deaths.

Several conditions—diabetes, chronic kidney disease, obesity, heart failure and pulmonary hypertension, among others—put older Blacks at heightened risk of becoming seriously ill and dying from COVID-19.

Yet many vulnerable Black seniors are deeply distrustful of government and health care institutions, complicating efforts to mitigate the pandemic’s impact.

The infamous Tuskegee syphilis study—in which African American participants in Alabama were not treated for their disease—remains a shocking, indelible example of racist medical experimentation. Just as important, the lifelong experience of racism in health care settings—symptoms discounted, needed treatments not given—leaves psychic scars.

In Seattle, Catholic Community Services sponsors the African American Elders Program, which serves nearly 400 frail homebound seniors each year.

“A lot of Black elders in this area migrated from the South a long time ago and were victims of a lot of racist practices growing up,” said Margaret Boddie, 77, who directs the program. “With the pandemic, they’re fearful of outsiders coming in and trying to tell them how to think and how to be. They think they’re being targeted. There’s a lot of paranoia.”

“They won’t open the door to people they don’t know, even to talk,” complicating efforts to send in social workers or nurses to provide assistance, Boddie said.

In Los Angeles, Karen Lincoln directs Advocates for African American Elders and is an associate professor of social work at the University of Southern California.

“Health literacy is a big issue in the older African American population because of how people were educated when they were young,” she said. “My maternal grandmother, she had a third-grade education. My grandfather, he made it to the fifth grade. For many people, understanding the information that’s put out, especially when it changes so often and people don’t really understand why, is a challenge.”

What this population needs, Lincoln suggested, is “help from people who they can relate to”—ideally, a cadre of African American community health workers.

With suspicion running high, older Blacks are keeping to themselves and avoiding health care providers.

“Testing? I know only of maybe two people who’ve been tested,” said Mardell Reed, 80, who lives in Pasadena, California, and volunteers with Lincoln’s program. “Taking a vaccine [for the coronavirus]? That is just not going to happen with most of the people I know. They don’t trust it and I don’t trust it.”

Reed has high blood pressure, anemia, arthritis and thyroid and kidney disease, all fairly well controlled. She rarely goes outside because of COVID-19. “I’m just afraid of being around people,” she admitted.

Other factors contribute to the heightened risk for older Blacks during the pandemic. They have fewer financial resources to draw upon and fewer community assets (such as grocery stores, pharmacies, transportation, community organizations that provide aging services) to rely on in times of adversity. And housing circumstances can contribute to the risk of infection.

In Chicago, Gilbert James, 78, lives in a 27-floor senior housing building, with 10 apartments on each floor. But only two of the building’s three elevators are operational at any time. Despite a “two-person-per-elevator policy,” people crowd onto the elevators, making it difficult to maintain social distance.

“The building doesn’t keep us updated on how they’re keeping things clean or whether people have gotten sick or died” of COVID-19, James said. Nationally, there are no efforts to track COVID-19 in low-income senior housing and little guidance about necessary infection control.

Large numbers of older Blacks also live in intergenerational households, where other adults, many of them essential workers, come and go for work, risking exposure to the coronavirus. As children return to school, they, too, are potential vectors of infection.

‘Striving Yet Never Arriving’

In recent years, the American Psychological Association has called attention to the impact of racism-related stress in older African Americans—yet another source of vulnerability.

This toxic stress, revived each time racism becomes manifest, has deleterious consequences to physical and mental health. Even racist acts committed against others can be a significant stressor.

“This older generation went through the civil rights movement. Desegregation. Their kids went through busing. They grew up with a knee on their neck, as it were,” said Keith Whitfield, provost at Wayne State University and an expert on aging in African Americans. “For them, it was an ongoing battle, striving yet never arriving. But there’s also a lot of resilience that we shouldn’t underestimate.”

This year, for some elders, violence against Blacks and COVID-19’s heavy toll on African American communities have been painful triggers. “The level of stress has definitely increased,” Lincoln said.

During ordinary times, families and churches are essential supports, providing practical assistance and emotional nurturing. But during the pandemic, many older Blacks have been isolated.

In her capacity as a volunteer, Reed has been phoning Los Angeles seniors. “For some of them, I’m the first person they’ve talked to in two to three days. They talk about how they don’t have anyone. I never knew there were so many African American elders who never married and don’t have children,” she said.

Meanwhile, social networks that keep elders feeling connected to other people are weakening.

“What is especially difficult for elders is the disruption of extended support networks, such as neighbors or the people they see at church,” said Taylor, of the University of Michigan. “Those are the ‘Hey, how are you doing? How are your kids? Anything you need?’ interactions. That type of caring is very comforting and it’s now missing.”

In Brooklyn, New York, Barbara Apparicio, 77, has been having Bible discussions with a group of church friends on the phone each weekend. Apparicio is a breast cancer survivor who had a stroke in 2012 and walks with a cane. Her son and his family live in an upstairs apartment, but she does not see him much.

“The hardest part for me [during this pandemic] has been not being able to go out to do the things I like to do and see people I normally see,” she said.

In Atlanta, Celestine Bray Bottoms, 83, who lives on her own in an affordable senior housing community, is relying on her faith to pull her through what has been a very difficult time. Bottoms was hospitalized with chest pains this month—a problem that persists. She receives dialysis three times a week and has survived leukemia.

“I don’t like the way the world is going. Right now, it’s awful,” she said. “But every morning when I wake up, the first thing I do is thank the Lord for another day. I have a strong faith and I feel blessed because I’m still alive. And I’m doing everything I can not to get this virus because I want to be here a while longer.”

From Kaiser Health News

The post Black Aging Matters, Too appeared first on Black Health Matters.

Every so often an opinion poll goes around on social media asking if folks would want to know in advance if they carry genetic material that could cause a fatal disease. Most people say no. Some of these diseases are terrifying, and advanced knowledge about something for which there is no cure? No thanks.

I’ve been a health reporter for years and know full well that early detection is crucial. But I’ve never taken any of these polls. Honestly, I’ve never felt the need.

That stance was called into question when my mom contracted pneumonia.

While in the hospital being treated, her medical team noticed fluid buildup caused by a leaking valve. A cardiac catheterization showed no blockage in her arteries (“she has the arteries of a 17-year-old,” one cardiologist said in amazement). A trans-esophageal echocardiogram was equally uninformative. Yes, her mitral valve was leaking. No, they didn’t know why.

But maybe she was a candidate for a relatively new procedure to repair the valve. If so, she’d be good as new. To prepare for the new procedure, she needed an MRI.

The MRI showed Mom’s heart muscle was thicker than it should be. This led to a heart biopsy. And finally, a diagnosis: something called amyloidosis. My mom struggled to pronounce it for a while. It could cause heart failure, they said.

We learned that there are several types of amyloidosis, so we needed to find out which type of amyloidosis she had. There is light chain amyloidosis, which sounded suspiciously akin to a blood cancer to my health journalist’s ears. I couldn’t get a straight answer about this, even when the recommended therapy for this type of amyloidosis included chemotherapy. There is wild-type ATTR amyloidosis, which the doctors said typically occurs later in life. And hereditary ATTR (hATTR) amyloidosis, a genetic and rare form of the disease that affects about 50,000 people worldwide with about 3-4% of African Americans carrying a TTR gene variant (i.e., mutation) called Val122Ile (V122I).

There were a lot of tests involved to determine which kind of amyloidosis she had. One night she had to produce nine huge tubes of blood. Then there was the three-gallon jug to collect a week’s worth of urine; this was to test Mom’s kidneys. She was also scheduled to have a bone marrow biopsy and a body X-ray.

There were also lots of questions about family history. Both my maternal grandparents suffered from congestive heart failure (CHF). My grandmother, who passed away at age 76, had diabetes, and though the link between diabetes and heart disease wasn’t discussed with her during her lifetime, CHF was listed as the cause of death on her death certificate. Granddaddy, once a smoker, battled emphysema and CHF the last two years of his life. Though he’d quit smoking before I was born, and had been nicotine free for nearly 40 years, his tobacco habit exacted a high price in the end. When he died at age 85, there’d been no mention of amyloidosis.

Knowing Family Medical History Is Key

While we waited for test results, a genetic counselor charted our family medical tree as best as she could. But as in many African American families, figuring out the tangled branches is a tall order. Even before being diagnosed with a disease we’d never heard of, there were gigantic holes in our family health history.

There’s the great-aunt who blamed her daughter’s death from asthma on a blister. High blood pressure and diabetes had run roughshod through generations of relatives, but nobody talked about the connection to heart disease. Scads of ancestors died without ever sharing their diagnoses. And this is all without taking into account the limitations 400 years of slavery and the difficulty African American families have in gathering complete medical knowledge.

Fortunately, blood test results solved the four-month-long mystery. My mom tested positive for a TTR gene variant associated with hATTR amyloidosis less than 12 hours before her bone marrow biopsy, rendering that painful test unnecessary.

I must note a couple of things so I don’t sound whiny and ungrateful: 1) Mom had been through so many tests—some invasive, a few pretty painful—so we were relieved to have a name for what ailed her, and 2) though four months of tests and questions seemed like a lot to us, her diagnosis came relatively quickly. hATTR amyloidosis often stumps folks in the medical community because its symptoms mimic so many other conditions, sometimes leaving patients suffering for years without a diagnosis.

It’s in the Genes

Our genetic counselor stressed the importance of understanding how hATTR amyloidosis can be passed down through families. Genetic counseling can help folks understand their chances of developing the condition, as well as make them familiar with the testing process and implications of a diagnosis. Genetic counselors also can help people understand the issues related to genetic testing—from personal risk to possible insurance impact— and can help determine if a genetic test may be right for them.

hATTR amyloidosis is caused by a variant or change in the TTR gene. This gene change affects the function of a protein called transthyretin (TTR). The condition is inherited in an autosomal dominant fashion, meaning a person needs to inherit only one copy of the affected gene from one parent in order to develop the disease. Everybody gets two copies of the TTR gene, one inherited from each parent. When one parent carries a variant in the TTR gene, each child will have a 50 percent chance of inheriting that variant. However, inheriting the TTR gene with a variant does not necessarily mean that he or she will develop hATTR amyloidosis.

My mom, one of six children, would need to discuss this with her siblings in the hopes they’d all get tested. She’d done the heavy lifting; they would need to have only a blood or saliva test to find out if they’d inherited the variant.

Our genetic counselor made it even easier. She supplied us with detailed information about hATTR amyloidosis and included geneticists in every city where family members reside. She also noted that a family member can inherit the TTR gene with a variant but having the variant does not mean hATTR amyloidosis is a given. Put simply: A person can carry the variant without ever developing the disease.

Still, only one of Mom’s siblings—her youngest sister—was tested (she doesn’t have the variant, so her only child, a son, doesn’t need the test). The remaining brothers and sisters have dragged their feet about testing, even though they all have young adult grandchildren on the verge of building lives and families. This information could be vital in their decision to have children—or not.

As much as I hate needles, I was tested last fall. What’s that saying? Knowing is half the battle. While I’m not showing any symptoms of hATTR amyloidosis, I did test positive for the genetic variant. The way I see it, my dark cloud is lined with a double layer of silver: I don’t have children, so this branch of the variant stops with me, and by knowing the results now, I’m better prepared should I start seeing signs of this disease down the road.

Genetic Testing 101

One option for genetic testing is through the Alnylam Act® program. Alnylam Pharmaceuticals is sponsoring no-charge, third-party genetic testing, and counseling for individuals who may carry one of the 120 or more gene variants known to be associated with hATTR amyloidosis. The Alnylam Act program was created to provide access to genetic testing and counseling to patients as a way to help people make more informed decisions about their health While Alnylam provides financial support for this program, tests, and services are performed by independent third parties. Healthcare professionals must confirm that patients meet certain criteria to use the program. Alnylam receives de-identified patient data from this program, but at no time does Alnylam receive patient-identifiable information. Alnylam may use healthcare professional contact information for research purposes. Both genetic testing and genetic counseling are available in the U.S. and Canada. Healthcare professionals and or patients who use this program have no obligation to recommend, purchase, order, prescribe, promote, administer, use or support any Alnylam product. In addition, no patients, healthcare professionals, or payers, including government payers, are billed for this program.

For more information about hATTR amyloidosis and genetic testing, please visit Alnylam’s The Bridge® and Alnylam Act.

For additional information and support check these resources:
o Amyloidosis Foundation: amyloidosis.org
o Amyloidosis Support Groups: amyloidosissupport.org
o Amyloidosis Research Consortium: arci.org
o The Foundation for Peripheral Neuropathy: www.foundationforpn.org/
o National Organization for Rare Disorders: rarediseases.org
o Global Genes: globalgenes.org

Alnylam Pharmaceuticals does not endorse and is not responsible for the content on sites that are not owned and operated by Alnylam Pharmaceuticals.

Content sponsored and provided by Alnylam Pharmaceuticals. Intended for U.S. audiences only.

The Bridge and Alnylam Act are registered trademarks of Alnylam Pharmaceuticals, Inc. © 2023 Alnylam Pharmaceuticals, Inc. All rights reserved.

TTR02-USA-01004-V3

The post We Have What? hATTR Amyloidosis: My Family’s Journey appeared first on Black Health Matters.

It was while visiting family in Waco, Texas, in the spring of 2019 that Ailani started feeling ill.

Doctors at Baylor Scott and White McLane Children’s found she had acute lymphoblastic leukemia.

Countless surgeries, spinal taps, transfusions and chemotherapy sessions led to Ailani receiving a marrow transplant from her dad.

The transplant worked well until recently.

“We almost celebrated her year transplant, she had three rounds of chemo left, and then P.J., Ailani‘s mom, called me and said unfortunately 58 percent of the cancer cells were back,“ explained Beth Carrion, account manager with the Be The Match program.

Now, Ailani’s oncologists say she has months to find a match that could save her life.

“She’s in critical right now, and we just need everybody to just go out and register with Be The Match so we can prayerfully find a match for Ailani,“ explained her aunt Giggett Johnson.

“She has a 2 to 3 month window where we actually need to find a 10 out of 10 match for her … now with Ailani’s story, because she is of mixed race, mom is black, dad is white, it’s even harder to find a match on the registry for her,“ said Carrion.

Registering with Be The Match is simple:

• Its free to register for people from ages 18 to 44, and for people 45 to 61 donors pay a $100 tax deductible fee
• Registration kits can be sent to you in the mail
• The test consists of a cotton swab in the inside of your cheek

The Be The Match program explained 1 in 430 people are selected as a genetic match.

Eighty percent of the time donors who match with patients simply give stem cells via an IV in their arm, and only a fifth of donors actually give through a procured in their leg.

“Be her hero, be our hero, in the words of Ailani, ‘God take this cancer away from me,’ so we know we need God’s help as well, so that’s what we’re asking for today so just [reach out to] Be The Match and register,” said Johnson.

To learn more and register to save Ailani, text SAVEAILANI to 61474. July is African American Bone Marrow Awareness Month.

Republished with permission from KXXV

The post In Search of a Be The Match Donor for 4-Year-Old Leukemia Patient appeared first on Black Health Matters.

These cells grow out of control, weakening the bone around the marrow, leading to bone lesions that may cause pain or fractures of the damaged bones. Over time, these cancerous cells can spill out of the bone marrow, traveling to other parts of the body and damaging organs. The disease can cause anemia and kidney problems.

Scientists don’t know what causes plasma cells to become malignant, but research suggests several possible culprits, including a genetic abnormality; environmental exposure to herbicides, insecticides, benzene, hair dyes and radiation; inflammation or infection. You’re also at an increased risk of developing multiple myeloma if you are 65 or older, male, African American and overweight or obese. Your chances go up even more if you have a family history of the disease.
People with multiple myeloma may not have any symptoms at first. As the disease becomes more advanced, however, they may experience weakness due to anemia, bone pain and damage to the kidneys. Other symptoms of multiple myeloma include:

Anemia
Bleeding
Loss of appetite
Nerve damage
Skin lesions
Enlarged tongue
Bone tenderness or pain
Weakness and fatigue
Shortness of breath
Infections
Bone fractures
Weight loss
Kidney failure

There is no cure for the disease, but current treatments are more effective and less toxic than they were in the past. Therapy may reduce the occurrence and severity of symptoms and prolong life. Ultimately, the prognosis for multiple myeloma varies depending on the stage at diagnosis and response to therapy.

This article is brought to you by Janssen.

The post Multiple Myeloma: What Is It? appeared first on Black Health Matters.

What is immunotherapy?

Immunotherapy is any treatment using the immune system to fight disease, including cancer. Immunotherapy acts on the cells of the immune system to help them attack cancer.

What are the types of immunotherapy?

The most widely used form of immunotherapy for cancer is called checkpoint inhibitors. These drugs, given intravenously, block a mechanism cancer cells use to shut down the immune system. This frees killer T-cells to attack a tumor. The Food and Drug Administration has approved four checkpoint inhibitors.

Cell therapy, another form of immunotherapy, involves removing immune cells from a patient, altering those cells genetically to help them fight cancer, multiplying them in the lab and dripping them, like a transfusion, back into the patient. This type of treatment, developed individually for each patient, is still experimental and available through clinical trials only.

Bispecific antibodies, an alternative to cell therapy, don’t not require individualized treatment for each patient. These antibodies are proteins that can attach to both a cancer cell and a T-cell, bringing them close together so the T-cell can attack the cancer.

Researchers haven’t had as much success with vaccines, another form of immunotherapy. Unlike childhood vaccines, which are used to keep a patient from developing childhood illnesses like measles, mumps or whooping cough, cancer vaccines are designed to attack the disease once a person has it. Researchers hope to someday combine vaccines and checkpoint inhibitors.

Which cancers are treated with immunotherapy?

Checkpoint inhibitors are used to treat advanced melanoma, Hodgkin’s lymphoma and cancers of the lung, kidney and bladder. Cell therapy has been used mostly for blood cancers like leukemia and lymphoma. “Early research with immunotherapy and breast cancer is lagging behind other cancers,” Dr. Puhalla said. “One option is to give immunotherapy for triple negative [breast cancer] in addition to chemotherapy. This is very promising for our patients who have triple negative.”

Does immunotherapy work?

Doctors have had remarkable success with immunotherapy in some cases, but it still works in only a minority of patients. About 20 percent to 40 percent of patients are helped by checkpoint inhibitors, though there have been cases where combining two checkpoint inhibitors increased the effectiveness. Cell therapy can produce complete remissions in 25 percent to 90 percent of patients with lymphoma or leukemia. In some cases, patients have gone into remission for for years; in others relapses occurred within a year.

Are there side effects?

Checkpoint inhibitors can cause lung inflammation, diarrhea or rheumatoid arthritis. Cell therapy can also lead to severe reactions resulting from the overstimulation of the immune system.

How much does immunotherapy cost?

Checkpoint inhibitors can cost $150,000 a year and are covered by most insurance companies if the drug has been approved for the type of cancer the patient has. Co-payments may be high, though. Because cell therapy hasn’t yet received FDA approval, the cost isn’t yet known. Experts expect them to cast a few hundred thousand dollars. Patients in clinical trials for checkpoint inhibitors and cell therapy may be able to get the treatments for free.

For more information about immunotherapy clinical trials, go to ClinicalTrials.gov.

The post Immunotherapy 101 appeared first on Black Health Matters.

The death rate from breast cancer in 1989 was 33.2 per 100,000 women, according to the American Cancer Society Flash forward to 2015 when the death rate plummeted 39 percent to 20.3. The improvement is largely attributed to increased awareness as well as advances in early detection and treatment. This improvement translates to an estimated fewer 322,660 deaths from breast cancer each year.

Generally, we speak of breast cancer as though it is one disease. Yet, there are several different types, and they are typically classified by the specific cells affected and whether or not it has spread to other parts of the body. One breast cancer─inflammatory breast cancer─doesn’t even start as a tumor, thereby escaping detection by mammogram.

The advances in treatments, however, do not apply across the board to all types of breast cancer. For instance, some tumors are affected by hormones in the blood. About 65 percent of breast cancers have receptors for both estrogen and progesterone, which can actually support the growth of breast cancer. In addition, cancer cells that have an excessive amount of a protein called HER2 tend to grow and spread more aggressively.

Fortunately, newer treatments─particularly hormone therapy and targeted drugs ─ are now available that increase the survival of women with these types of cancers.

For those with triple-negative breast cancer, however, it’s a different story. The cells in this type of breast cancer lack hormone receptors and are lacking or low in the HER2 protein. Because of their characteristics, hormone therapy and drugs that target HER2 are not effective treatments. Chemotherapy is usually the standard treatment along with surgery and radiation. However, a large number of patients develop resistance to treatment within a few months.

TNBC is more common among black women and occurs at a younger age. It is more aggressive and more likely to spread and recur. While generally the five-year survival rate for breast cancer is 90 percent, the five-year survival rate for TNBC is only 77 percent, according to breastcancer.org.

A recent study published in the New England Journal of Medicine offered encouraging news, however. For the first time, immunotherapy has shown an increase in survival rates for those with TNBC. Immunotherapy stimulates the body’s immune system to recognize and combat cancer cells.

The study included 900 women from 41 countries who were divided into two groups─those who received chemotherapy and an immunotherapy drug, and those who received chemotherapy and a placebo. All participants had metastatic cancer, meaning that it had spread beyond the confines of the breast.

A preliminary interim analysis showed encouraging results. Those who received the immunotherapy drug had at least a 10-month longer survival rate than those taking the placebo.

The study is significant for two reasons. While immunotherapy is often used for lung cancer and lymphoma, for example, breast cancer has traditionally been regarded as unresponsive to the immune system, according to the Cancer Research Institute. This study may turn the tide for this type of treatment.

The most significant finding, however, is a possible new-found hope for those with TNBC.

The post Advances in Treatment of Triple Negative Breast Cancer appeared first on Black Health Matters.

When Janoi Burgess was a child, he thought doctor appointments were fun.

“I used to love it because they had a section where you could play games,” said Burgess, who was born with sickle cell anemia, an inherited blood disorder. “They were really nice and friendly.”

But when he turned 21, the South Florida resident could no longer go to his pediatric specialist. Instead, he “bounced around” to various adult primary care doctors, none of whom seemed well versed in the details of his condition. When he had a painful sickle cell crisis two years later, his only choice was to go to a hospital emergency department, where, he says, he waited three hours for pain medication.

“They triage you based on severity, and pain is not something that they consider as severe” as other conditions, he recently recalled. “One doctor even said, ‘Your labs are OK so you’re not in pain.’ It was crazy and insulting at the same time.”

Burgess’ experience is not unusual among many adult sickle cell patients. The disease affects up to 100,000 people in the United States, most of them African Americans. For many years, most people with sickle cell died in childhood or adolescence, and the condition remained in the province of pediatrics. During the past two decades, advances in routine care have allowed many people to live into middle age and beyond.

“Some people with sickle cell disease are actually living to be elderly, and the majority of patients are adults,” said Wally Smith, M.D., of the Virginia Commonwealth University Medical Center. “We don’t have a health-care system ready for that.”

Early adulthood, a time when patients make a switch from pediatric to adult care, can be perilous for these patients. A 2010 study of 940 Dallas people with sickle cell born after 1982 reported that the period immediately after they “aged out” of pediatric care was the riskiest for death. Other research found that Wisconsin Medicaid patients with sickle cell were especially likely to rely on emergency departments for care during this transitional time period.

One explanation for the increased deaths could be that early adulthood is a time when the repeated stresses of sickle cell “catch up” with the body. But social and health system factors also play an important role.

Compared with other genetic diseases, a disproportionate number of patients with sickle cell  rely on Medicaid, the federal-state health insurance program for low-income people, but finding specialists who accept Medicaid’s lower reimbursements can be difficult.

There also is an inadequate number of physicians with expertise in the condition. Few adult hematologists—blood disease specialists—focus on sickle cell, which is less lucrative than conditions such as leukemia.

‘Many clinicians dislike taking care of people with sickle cell disease because of issues around pain management. When you add in race, it’s a perfect storm.’
“The number of hematologists available to provide that care is far too small to address the need,” said Michael DeBaun, M.D., director of the Vanderbilt-Meharry-Matthew Walker Center for Excellence in Sickle Cell Disease in Nashville, Tennessee.

In addition, sickle cell day hospitals—dedicated infusion centers where patients can get intravenous treatment for acute pain episodes—have been shown to reduce hospitalizations and reduce the length of crises. Yet fewer than a dozen such centers exist nationally, according to medical experts who have studied them or set up such facilities.

Pain is a hallmark of sickle cell disease, which is caused by abnormal hemoglobin, the protein that allows red blood cells to carry oxygen to the body’s tissues. Under certain conditions, these affected red blood cells lose their characteristic disk shape and morph into rigid crescents, clogging up small blood vessels and disrupting the flow of blood. Nearly a third of adults with sickle cell disease experience pain, often moderately or severely intense, almost every day, and opiates are an important part of managing the condition. Often, physicians and nurses are skeptical of adult sickle cell patients’ motives in asking for pain medication, even though narcotic addiction is no more common in people with sickle cell disease than in the general population.

“There is no disease bigger than sickle cell in terms of bias and disrespect,” said Mary Catherine Beach, M.D., a professor of medicine at Johns Hopkins. “Many clinicians dislike taking care of people with sickle cell disease because of issues around pain management. When you add in race, it’s a perfect storm.”

Silent strokes, which do not cause any obvious sign of injury, also complicate the transition to adult care for some patients. They occur in more than one in five people with sickle cell by the late teen years. These strokes can lead to problems with understanding and decision making, preventing effective navigation of a confusing adult health system.

“In pediatrics, if you miss your appointment, a nurse will call, or someone might even go to your house,” said Charles Quinn, M.D., a pediatric hematologist at Cincinnati Children’s Hospital. “In adult medicine, if you miss your appointment, you’re on your own. It’s an entirely different system of health-care delivery that happens abruptly.”

One strategy to improve care is for children with sickle cell to see a family medicine or a med-peds physician, who can provide care for them from birth through their adult years. Family medicine specialists complete a three-year residency after medical school that includes rotations in obstetrics and gynecology, surgery, geriatrics, psychiatry, and medicine and pediatrics. Med-peds physicians complete both a pediatrics residency and an internal medicine residency, and most take separate exams to become board-certified in both fields.

But there is a shortage of primary care physicians generally, and fewer than 400 doctors graduate from med-peds residencies every year, according to Niraj Sharma, M.D., who directs the Harvard Brigham and Women’s/Children’s Hospital Boston Med-Peds Residency.

Instead, he said, all pediatricians should start to discuss the transition, including educating their patients with chronic conditions about their illness, at age 12.

One obstacle to smooth transfers has traditionally been physician reimbursement, said Patience White, M.D., co-director of GotTransition.org, a federally funded center that aims to improve the transition process. Her group has been working with medical professional societies to propose a new billing code that would allow internists to be paid for the work of communicating with pediatricians and reviewing extensive medical records as patients transition.

Another barrier for adults has been primary care providers’ lack of familiarity with routine management of the condition. In addition to their discomfort prescribing narcotics, nonspecialists often aren’t comfortable administering hydroxyurea, a medication that has been shown to reduce painful crises and save lives in patients with sickle cell.

A team of experts at Johns Hopkins Medical Center, led by Rosalyn Stewart, M.D., and John J. Strouse, M.D., seeks to deal with such problems by helping doctors improve their knowledge of sickle cell through a weekly video conference program.

On another front, Coretta Jenerette, an associate professor of nursing at the University of North Carolina at Chapel Hill, works with patients to help them explain their symptoms so that medical professionals can better understand what they need. “When you come to adult care, there’s an expectation that you’re able to give your history and the reason you are seeking care yourself.”

Burgess, now 28, finally found an adult specialist who stabilized his sickle cell, enabling him to complete a college nursing degree. “There are a few nurses who made an impact on my life, and I’d like to add to that,” he said. “I have a need to help, and I feel like I can do it.”

From Kaiser Health News

For more information on patient’s access to sickle cell disease care and how COVID-19 has impacted those with the disease, watch the video below from Black Health Matter’s 2020 Summer Summit.

The post Who Cares for Adult Sickle Cell Patients? appeared first on Black Health Matters.

It’s another week, and there’s more evidence that we need to get up out of our seats. A new study reveals women who sit too much have an increased risk of cancer.

A growing database of research from the past couple of years shows too much sitting carries risk above just lack of exercise. Most notably, studies have looked at the connections between excess sitting and heart disease, diabetes, stroke and obesity.

The new study included 184,000 adults aged 50 to 70, who were enrolled in American Cancer Society Cancer Prevention Study II Nutrition Cohort. Participants answered a questionnaire about how many hours they work, exercise, perform household activities and sit for leisure (sitting to watch TV, reading or playing with electronic gadgets). Researchers followed the 69,260 men for about 13 years and the 77,462 women for about 16 and compared their behaviors to their health.

For women, the results are distressing. Those who sat more than six hours a day had a 10 percent greater risk of getting any cancer compared to ladies who sat for less than three hours. Those who sat for more than six hours a day had a 65 percent increased risk for multiple myeloma, a 43 percent higher risk for ovarian cancer and a 10 percent increased risk for invasive breast cancer than their peers who sat for three hours or less each day.

Too much sitting can impact metabolism and may also increase body fat and estrogen levels, which can lead to common female cancers, according to experts.

The post Too Much Sitting May Cause Cancer appeared first on Black Health Matters.

Soon after, she received “a stunning diagnosis—leukemia.” Fisher “was in shock and in complete disbelief,” she said. But she was also determined. “It wasn’t really an option for me not to fight for my life.”

That fight began in Atlanta, where Fisher was attending college. Chemotherapy initially “sent the leukemia into remission.” When it returned, Fisher decided to return to her hometown of Jacksonville, Florida, and begin treatment at Mayo Clinic. She had more chemotherapy and eventually was told she would need a bone marrow transplant. “I had a lot of questions,” she said. They were answered by “an amazing team and a determined doctor”—James Foran, M.D., a hematologist/oncologist.

One thing Fisher learned was that as an African American, her likelihood of finding a compatible bone marrow donor on the national registry was just 23 percent. “The biggest challenge that we have to find donors to proceed with bone marrow transplantation is ethnicity,” Ernesto Ayala, M.D., a hematologist/oncologist, said. “If I have a patient that belongs to an ethnic minority, then I will only find a donor in the registry in about 20 to 25 percent of cases.”

Thankfully, Fisher’s team did find a compatible donor, three months after she went on the registry. She had a bone marrow transplant in October 2018 and “has since become an advocate for other people who need life-saving bone marrow.” Especially people like her.

Fisher is sharing her story to help raise awareness of the need for donors among minority populations. “I think there is a lack of diversity due to a lack of information,” she said. She wants people to know the registry “is a lifesaver” and “a blessing unlike anything you can imagine, giving someone a chance at life.”

She’s grateful for her chance, and plans to use it to help others. “I still plan to go to medical school,” Fisher said. “I feel as though my future might have oncology in it.”

The post Leukemia Patient Becomes Advocate for Diversity on Bone Marrow Registry appeared first on Black Health Matters.

Looking for a way to sidestep cancer? Try adding a few brisk walks and stair climbs to those side steps.

A recent study involving nearly 1.5 million participants has found that exercise—or as the researchers call it, a higher level of “leisure-time physical activity”—is associated with lower risk in a substantial number of cancers, bolstering previous evidence of exercise’s role in cancer risk reduction. The findings, published in JAMA Internal Medicine, further indicate exercise can reduce the risk of cancer despite body size or smoking history. In other words, even if you’re overweight and a smoker, you can still cut down your cancer risk if you get up and move.

“Size matters in epidemiologic studies because it gives you greater power to detect associations and to examine effects in subgroups,” said Dr. Anne McTiernan, a cancer prevention researcher at Fred Hutchinson Cancer Research Center. This study, she said, “was huuuuuge.”

Led by researchers at the National Cancer Institute, the epidemiological study cobbled together a dozen large U.S. and European prospective cohorts (groups of study participants who’d been followed for a number of years) in order to create a mega-pool of 1.44 million men and women. They then analyzed the participants’ information—their age, gender, body mass index, smoking status, self-reported data on exercise and, if applicable, cancer diagnoses—to determine the effect exercise had on various cancers. All told, 186,932 primary cancers were diagnosed during the follow up period (median follow-up was 11 years).

The evidence was significant. Exercise, already known to reduce the risk of heart disease and colon, breast and endometrial cancers, substantially lowered cancer risk in 13 of the 26 cancers examined, many by more than 20 percent.

And the benefit was much higher than that in some cases.

The risk of esophageal adenocarcinoma dropped by a whopping 42 percent in people who were active, and exercise cut the risk of liver and lung cancer by 27 and 26 percent, respectively. Working out also led to a 23 percent reduced risk for kidney cancer and a 22 percent reduced risk for gastric cardia (a type of stomach cancer).

Other cancer risks dropped as follows: endometrial by 21 percent; myeloid leukemia by 20 percent; myeloma by 17 percent; colon by 16 percent; head and neck by 15 percent; rectal by 13 percent; bladder by 13 percent and breast by 10 percent.

Conversely, exercise increased the risk of malignant melanoma by 27 percent, although researchers believed this was due to increased sun exposure since this association was most often found in areas with high ultraviolet radiation from the sun.

Exercise was also associated with a 5 percent bump in early stage prostate cancer but researchers chalked this up to the fact that physically active men are more likely to see a doctor and get screened than inactive men. The 5 percent rise, they concluded, was most likely “screening bias,” since there was no observed bump in advanced prostate cancers among active men.

Despite mountains of evidence showing the benefits of exercise, half the population of the U.S. does not meet the recommended physical activity levels (worldwide, the physical inactivity level is 31 percent).

According to the U.S. Surgeon General’s guidelines, for “substantial health benefits,” adults should do at least 150 minutes a week of moderate-intensity aerobic physical activity, with the exercise spread throughout the week rather than performed in one massive workout session. The guidelines also recommend strength-training that’s “moderate or high intensity and involves all major muscle groups” two days a week.

“The aerobics can be brisk walking,” McTiernan said. “[There’s] no need to become an athlete.”

But keep in mind: the more you exercise, the greater the health benefits. According to the U.S. guidelines, if you want more extensive health benefits, shoot for five hours a week of moderate-intensity exercise (or 150 minutes of vigorous-intensity aerobic activity).

McTiernan, who has conducted numerous studies on exercise as it relates to cancer prevention and survivorship, called the NCI study well-designed and well-conducted, and said the data used was from “very, well-respected cohort studies,” including the American Cancer Society’s Cancer Prevention Study; the Swedish Cancer Society and NCI’s Women’s Lifestyle and Health Study; and the Women’s Health Study and Physicians’ Health Study at Brigham and Women’s Hospital and Harvard Medical School.

There were some drawbacks, however. Although participants were fairly evenly split gender-wise, most of the participants were white, providing little information on the cancer-busting benefits of exercise in minorities. Information on the type of exercise was also limited, McTiernan said, with most of the activity recorded being aerobic (think running, walking, jogging or biking).

“It gives no information on associations with strength training,” she said. “Based on these findings, we can’t say what exercise and how much.”

She also noted the participants’ physical activity was all self-reported, which could be problematic since researchers have discovered that “people over-report their level of activity.”

Despite the drawbacks, McTiernan was enthusiastic about the findings and their public health implications.

“I’d say it’s one more reason to stay active,” she said. “It’s not a guarantee but it’s probably going to reduce risk for several cancers.”

And considering the bump in malignant melanoma, she added this advice: “Those who choose to exercise outdoors, which I highly recommend, need to use sun protection to avoid the adverse effect of sun on melanoma and other skin cancers.”

—Diane Mapes

From Fred Hutch News Service

The post Exercise Cuts Cancer Risk appeared first on Black Health Matters.

How Multiple Myeloma Starts

Multiple Myeloma is cancer of a type of immune cell called a plasma cell. The plasma cell is a type of white blood cell that is made in your bone marrow (the tissue inside your bones). These cells produce antibodies that help your body fight infection, disease, and even cancer.

But when you have Multiple Myeloma (MM), changes to your cells’ genetic makeup cause your normal plasma cells to transform into malignant (or cancerous) myeloma cells. These malignant myeloma cells then connect with other cells in your bone marrow, giving them a foundation to grow even more myeloma cells.

How Multiple Myeloma Continues Over Time

Once myeloma cells begin to grow in your bone marrow, a continuous cycle of growth begins. There are 2 different, but equally important, parts of the cycle of MM:

1. Myeloma cells grow and multiply within your bone marrow. They overcrowd the tissue space, leaving no room for your healthy immune cells to grow. Myeloma cells also release chemicals (called cytokines) that can stop healthy immune cells from working.
2. When your healthy immune cells can’t grow, they can’t fight off diseases, including MM. Your weakened immune system then allows more myeloma cells to grow.

This cycle keeps going around and around — and this is what makes MM a chronic and progressive disease that requires a long-term plan to help manage it.

How Multiple Myeloma Can Affect Your Health

Untreated MM can cause a range of harmful effects to your body. This is why it’s so important to work with your healthcare team to help manage the disease. If myeloma cells continue to grow in your bone marrow, they can cause symptoms commonly referred to as CRAB (Calcium, Renal, Anemia, Bone) and infection:

• Calcium in your blood: Myeloma cells connect with other cells in your bone marrow, which can eventually lead to extra calcium in your blood. This puts a strain on your kidneys, which are responsible for filtering your blood, and can lead to other symptoms such as fatigue (extreme tiredness), loss of appetite, increased thirst and/or urination, restlessness, nausea and vomiting, and even trouble thinking or confusion.
• Renal (or kidney) problems: In addition to the problems caused by extra calcium in your blood, myeloma cells also release a type of protein (called M-protein) that can damage your kidneys. You need your kidneys to help prevent waste and extra fluids from building up in your body, to keep levels of electrolytes (such as sodium, potassium, and phosphate) stable, and to make hormones that help keep your bones strong and your blood pressure in check.
• Anemia: With less space in your bone marrow for healthy red blood cells, you have a higher risk of anemia. This means that your blood cannot carry enough oxygen to the rest of your body. Anemia can cause symptoms such as fatigue, headache, shortness of breath, and feelings of being very cold, dizzy, or irritable.
• Bone problems: Myeloma can cause bone destruction, which can result in bone pain. This damage occurs as MM interferes with 2 ways that bones normally develop: reducing the activity of osteoblasts, which usually help build new bone; and promoting the activity of osteoclasts, which usually break down old bone.
• Infection caused by a weakened immune system: When myeloma cells crowd out the other cells in your body, you are left at higher risk of infection and disease. A weakened immune system also allows more myeloma cells to grow.

If you have questions about multiple myeloma, please see your healthcare professional.   For additional articles on multiple myeloma see: https://blackhealthmatters.com//?s=multiple+myeloma.

This excerpt was taken from Myeloma Central.  For additional information on multiple myeloma go to www.myelomacentral.com.

The post How Multiple Myeloma Starts appeared first on Black Health Matters.

Brown then delved into how scientific research aimed at developing better treatments for specific diseases is being done all over the country every day, but she pulled no punches about the lack of inclusion of African Americans in this research.

“They say it’s all in the genes,” Brown said. “That’s very true. What’s in the genes is something about the type of cancer that African American men and women get is different than the type they have in Sweden. Prostate cancer, breast cancer, colon cancer, uterine cancer, multiple myeloma—these are the cancers with huge disparities. We need men and women of African descent to participate in trials.”

Brown also outlined how ageism can play a part in keeping us out of medical research.

“Government agencies say women after age 65 with adequate screenings for the previous five years, no longer need Pap smears,” Brown said. “This isn’t true. The death rates start increasing exponentially after age 65. Many of us are sexually active after age 65. If you have a cervix after age 65, you still need to get screened.”

But the biggest indicator of cancer diagnosis and survival? Poverty. It’s even bigger than race, Brown said. “If you have Medicaid, you do worse with breast cancer no matter what color you are, even worse than people with no insurance.

“Medicare Advantage plans do not let you go to NYU or Sloan Kettering. They want you to go where the care is cheapest. You don’t want cheap cancer care. You want the best cancer care.”

Where is that care? According to Brown, most cancer centers have programs dedicated to eliminating disparities. It is at these centers where cutting-edge scientific study is done. And it’s critical for black folks to be part of that research.

“You’re going to get the best, latest advances and better care,” she said. “You can help get rid of some of these disparities, particularly if you’re a person of color. Clinical research plus underserved populations equals cancer health equity.”

So why are so few of us taking part in clinical trials? The easy answer is our fear of research borne out of medical experimentation—think: Tuskegee Experiment and Henrietta Lacks. But the truth is that most people aren’t old enough to remember this mistreatment.

Brown suggested the culprit is deeper than that.

Some of our reluctance centers around cost. We worry we won’t be able to afford the treatment. “Medicare does cover all of the costs associated with participating in a clinical trials,” she said, giving credit for this to legislation passed during Bill Clinton’s administration. “Medicaid does not. But there’s a bill in Congress right now to make this mandatory for Medicaid. There is no study in New York City where someone should not be given access to a clinical trial because of costs.”

Another roadblock to minority involvement in clinical trials comes from the medical profession itself.

“A lot of oncologists assume poor patients, homeless patients, old patients, or patients of color won’t be able to deal with this clinical trial, so they think, ‘I’m not going to tell them about it,’” Brown said. “We have to get past that.

Sloan Kettering works hard to avoid those assumptions. It’s not the only center actively seeking people of color for research, but it’s the place Brown knows best. “We are very aggressive about informing patients about research and clinical trials,” she said.

Today’s cancer treatment is all about precision medicine. This is where a test tells each patient what their particular cancer looks like from a DNA standpoint.

“We learn a way to manipulate this cancer by taking your cancer and your blood and mapping the genome. We can target the mutations in the cancer genome,” Brown said. “New drugs are being developed every day. How? By clinical trials. Participating in a clinical trial is the best way for people of color affected by cancer to level the playing field.”

Read about the 3rd Black Health Matters Summit Recap here: https://blackhealthmatters.com/summitsouth/recap2019/

The post Clinical Trials Key to Eliminating Cancer Disparities appeared first on Black Health Matters.

Eight additional types of cancer are now linked to the obesity epidemic in this country: gall bladder, liver, meningioma, multiple myeloma, ovary, pancreas, stomach and thyroid cancers.

The findings are based on an analysis of more than 1,000 studies of excess weight and cancer risk analyzed by the World Health Organization’s France-based International Agency for Cancer on Research.

“The burden of cancer due to being overweight or obese is more extensive than what has been assumed,” said Graham Colditz, a cancer prevention expert at the School of Medicine at Washington University in St. Louis. “Many of the newly identified cancers linked to excess weight haven’t been on people’s radar screens as having a weight component.”

It is estimated that one-third of adults and children in the United States are too heavy, and researchers say limiting weight gain could help reduce the risk of these cancers.

This same group of cancer researchers found sufficient evidence linking excess weight to higher risks of cancers of the colon, esophagus, kidney, breast and uterus in an different study from last decade.

“Lifestyle factors such as eating a healthy diet, maintaining a healthy weight and exercising, in addition to not smoking, can have a significant impact on reducing cancer risk,” Colditz said. “Public health efforts to combat cancer should focus on these things that people have some control over. But losing weight is hard for many people. Rather than getting discouraged and giving up, those struggling to take off weight could instead focus on avoiding more weight gain.”

The reasons why being overweight or obese can increase cancer risk are many, according to the researchers. Excess fat leads to an overproduction of estrogen, testosterone and insulin, and promotes inflammation, all of which can drive cancer growth.

“Significant numbers of the U.S. and the world’s population are overweight,” Colditz said. “This is another wake-up call. It’s time to take our health and our diets seriously.”

The post Obesity Feeds Cancer appeared first on Black Health Matters.

Health disparities in cancer exist based on race and ethnicity, socioeconomic status and age.
For nearly all forms of cancer, including breast, lung, colon, prostate and uterine cancers, black folks do worse.
“On the surface, that’s not fair,” Carol Brown, M.D., Associate Cancer Center Director for Diversity and Outreach at Memorial Sloan Kettering Cancer Center, tells the gathered crowd at the Black Health Matters Summit at Riverside Church in Harlem, New York, on a recent Saturday afternoon. “Why is that happening? Is it because of injustice or discrimination, or is there something about these cancers and how they work in black people that makes them more difficult to treat?”
Dr. Brown has spent nearly the last three decades trying to answer these questions.
Here’s what we know: Clinical research in underserved populations equals cancer health equity. Put simply, clinical trials are a crucial step to finding new and promising ways to improve treatment for cancer. Most medical advances have come as a result of clinical trials.
Yet, less than 3 percent of people with cancer nationwide enroll in clinical trials.
Despite what we know about the Tuskegee experiment from last century, the reasons why we have such low participation in clinical trials are varied:

• Mistrust in the medical community is a small part.
• We lack awareness about many clinical trials.
• We’re uninvited. We don’t participate because we aren’t asked. Often this is because “the doctor assumes we won’t understand, won’t want to participate or are too sick,” Dr. Brown says. In addition, she explains, “doctors are less likely to ask older people and people who aren’t white to participate in a clinical trial.”
• Our cultural beliefs dissuade us from joining a clinical trial.
• We don’t know the eligibility criteria.
• We are uninsured. Here’s a little-known fact: President Bill Clinton required all commercial insurance plans and Medicare to cover clinical trial costs. The downside? Medicaid does not cover these costs.
• Language differences account for some lack of participation.
• Physician awareness is also key. If your doctor doesn’t know about a clinical trial, he or she can’t invite you to participate.

Researchers at Memorial Sloan-Kettering in New York City have been working to overcome these challenges. According to Dr. Brown, 1 out of 3 patients who enter the facility’s doors enroll in a clinical trial.
“We empower our patients and get them access to cutting-edge, life-changing treatments,” she says.
Some therapies being studied right now at Memorial Sloan-Kettering include:

• Breast cancer. Black women have 10 percent lower cure rates. Currently, researchers have one targeted therapy plus hormone therapy clinical trial and four trials for women with the deadly triple-negative breast cancer.
• Colon cancer. Black patients have 8 percent lower cure rates, and the disease occurs 10 years earlier in blacks than in whites. It is also a more aggressive cancer in blacks. Right now there are four targeted therapy trials for this cancer, and one trial is focused on explaining the racial differences.
• Multiple myeloma. This bone marrow cancer happens at two times the rate in blacks as it does in whites, and the age at diagnosis is 10 years younger in black folks. Researchers have three targeted therapy plus steroid trials in the works.

Dr. Brown is a tireless clinical trials advocate. “Participating in cancer clinical trials is the best way to level the playing field for black people affected by cancer,” she says.  “We’re not just talking about the best in terms of care, but access to the best in new therapies, access to new drugs and interventions before they are widely available. If the treatment is a success, you are among the first to benefit. Memorial Sloan-Kettering is leading the way to understanding racial and ethnical differences in cancer, allowing us to disseminate treatments that can end disparities.”
Click here to download Dr. Brown’s Presentation given at the 2018 Black Health Matters Summit.

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An investigation by a team of epidemiologists from the American Cancer Society has provided a sobering look into who, exactly, is dying of cancer because of their addiction to cigarettes.
The paper provided a state-by-state breakdown of smoking-related cancer deaths in the United States, an analysis that highlighted both the influence of Big Tobacco and societal health disparities.
All told, cigarette smoking was directly responsible for nearly 30 percent of all cancer deaths in the U.S. in 2014, killing just over 167,000 men and women. And that number is low, researchers said, since they only looked at 12 cancers (there are more tied to tobacco use) and didn’t fold in cancer deaths caused by secondhand smoke, pipes, cigars, smokeless tobacco or nicotine products like e-cigs. Cancers examined included acute myeloid leukemia as well as cancers of the lung, liver, pancreas, colon, esophagus and six other body sites.
Men were much more likely to die than women, researchers found, particularly those from Southern states where people tend to smoke more, have less education and anti-smoking policies and programs are weaker thanks to Big Tobacco’s influence (95 percent of the U.S. tobacco crop is grown in the South).
“The proportion of cancer deaths attributable to cigarette smoking varies substantially across states [but] is highest in the South, where up to 40 percent of cancer deaths in men are caused by smoking,” wrote lead author and senior epidemiologist Joannie Lortet-Tieulent of the ACS’s Surveillance and Health Services Research Program in Atlanta.
Jaimee Heffner, a public health researcher with the Tobacco and Health Behavior Science Research Group at Fred Hutchinson Cancer Research Center, said the report was the first of its kind to look at smoking’s impact by state.
“Previously, there have been national-level data but this was the first study to look at deaths on a state-by-state basis,” she said. “I think this will be useful for the tobacco-control efforts taking place in each state. They’ll be able to say, ‘This is yet another indicator how much tobacco is affecting the health of our population.’”
Although enlightening, Heffner said the report’s findings weren’t all that surprising.
“It maps onto the prevalence of smoking in each state,” she said. “It makes sense. The states with the highest smoking prevalence should have the higher mortality from smoking-related cancer.”
Kentucky, where tobacco farming was the No. 1 crop for most of the 20th century, had the highest proportion of cigarette-related cancer deaths in the nation: 38.2 percent of the men and 29 percent of the women who died of cancer in that state died because of cigarettes. In addition to Kentucky, others among the “top 10” states for cigarette-related cancer deaths were, from top down, Arkansas, Tennessee, West Virginia, Louisiana, Alaska, Missouri, Alabama, Oklahoma and Nevada.
Utah, which has a high number of Mormons (adherents don’t smoke or drink), had the lowest proportion of cigarette-related cancer deaths: 21.8 of men and a mere 11.1 percent of women had cancer deaths linked to cigarette smoking. In addition to Utah, the “bottom 10” states where fewer people die of smoking-related cancers were, from bottom up, California, Colorado, Hawaii, New York, Idaho, Minnesota, New Jersey, Texas and North Dakota. Washington state weighed in at No. 36, just a smidge better than Oregon.
On average, about 30 percent of men’s cancer deaths and about 20 percent of women’s were due to smoking cigarettes.
Heffner, whose research focuses on smoking cessation, particularly among vulnerable populations, said the report definitely highlighted “the bigger issue of disparities.”
“Certain people have a greater exposure to tobacco because of where they live or who they are,” she said. “The state you live in and the tobacco-control policies in that state influence the rates of smoking. We have specific populations—people  with a low socioeconomic status, people in certain racial groups, people with psychiatric disorders—who have a higher prevalence of smoking. And in those groups, you see higher rates of tobacco-related disease and deaths, including death from cancer.”
Southern states have higher smoking-related cancer deaths than, say, states like Utah or Connecticut because black men tend to smoke more than white men and Southern states have more blacks. But timely and affordable access to screening and high-quality health care also come into play. Blacks are more likely to be diagnosed later, when treatments are more limited and less effective, and their five-year survival rates are lower.
Likewise, people with a low level of education (high school graduate or less) tend to smoke more than college graduates. So in states like Kentucky, where only 50 percent of adults go on to college, you’re going to find more smokers and more cancer-related smoking deaths.
It’s not that these people don’t know cigarettes can cause cancer, said Heffner, it’s just that the health disparities deck is stacked against them.
“I have yet to meet a smoker, regardless of educational level, who didn’t understand that smoking carried health risks,” she said. “[But] people of low socioeconomic status (including low education and income as indicators) have less access to resources to help them quit, live in areas with higher concentrations of tobacco outlets, have greater exposure to other smokers and, consequently, [have] more social influence to smoke.”
The ACS report also showed how public policy impacts public health, for better or worse.
“Policy initiatives are heavily influenced by the tobacco industry in all states, especially those in the South,” wrote study author Lortet-Tieulent. “Public smoking restrictions and high cigarette prices (through excise taxes, price promotion restrictions and minimum price laws) are among the most effective tobacco control policies, and both are primarily legislated by states.”
Not surprisingly, the least restrictive public smoking policies and the most affordable cigarettes are found in the South.
In major tobacco states, for instance, the mean cigarette excise tax is 49 cents compared with $1.80 in other states, the report said. Virginia charges 30 cents extra per pack, North Carolina charges 45 cents and Kentucky charges 60 cents. New York, on the other hand, taxes each pack an additional $4.35; New York ranks fifth in the least amount of cancer-related smoking deaths.
What can we do? The study authors called for increased tobacco-control funding and stronger tobacco-control policies and programs to help mitigate the “burden of smoking-related cancers,” which they felt were too high in all states, “regardless of ranking.”
Heffner agreed that broader tobacco-control strategies were key, but said it was also important to work together to help friends and loved ones kick a very addictive habit.
“On average, nationally, we know that one-third of cancer deaths are caused by tobacco use,” she said. “We all need to work together on this issue to bring everyone along. Stopping smoking is, by far, the best thing someone can do to prevent cancer.”
From Fred Hutch News

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Cheryl Boyce, a health-care advocate, had heard of multiple myeloma, but the disease was the furthest thing from her mind when she went to have a prescription refilled. She had been having puzzling symptoms: bone pain and “tiredness. It’s not a regular being tired, but a deep, dark tired,” she says. “The kind where you can sleep for days and wake up just as tired as when you went to sleep.”

Boyce mentioned the symptoms to her doctor, and he ran blood tests. She learned she had multiple myeloma and the importance of early intervention. “My multiple myeloma is not curable, but it’s treatable,” she says. “I’ve been in remission for some time, and I lead an active lifestyle.”

With that diagnosis, Boyce became part of a growing community. The National Cancer Institute reports a 1 percent increase each year in incidence of the disease since 1975. Multiple myeloma, a cancer of the bone marrow (and the third most common blood cancer after lymphoma and leukemia), is twice as likely to strike blacks as it is other races and ethnicities. But it is a disease about which the public knows very little.

That’s something Craig Cole, M.D., a hematologist at the University of Michigan Comprehensive Cancer Center in Ann Arbor, Michigan, told Black Health Matters he’s working to change.

Black Health Matters: What is multiple myeloma?

Craig Cole, M.D.: It is a cancer that arises from the bone marrow. The marrow makes all the blood cells and blood plasma. Like any cell in the body, bone marrow cells, specifically the plasma cells, can become cancerous. When it does, that’s called multiple myeloma. Plasma cells almost exclusively go to the bone, causing bone thinning and lesions, including in the spine, arms and legs. There are multiple bones involved, that’s why the multiple.

Why don’t we know more about this disease?

Dr. Cole: Even though it affects African Americans two times as much as Caucasian groups, there hasn’t been a lot of dissemination of knowledge or publicity. That’s in part because in the past we didn’t have very good treatments for multiple myeloma. It’s important to detect this disease early and raise awareness.

What are the risk factors for multiple myeloma?

Dr. Cole: As I mentioned, the incidence in people of African-American decent is twice as high as in Caucasians and other races. It’s a disease of older individuals; children do not get this disease. The average age is about 70. It’s more common in men than women. There’s some thought that long-term low-dose exposure to radiation might contribute. It’s not hereditary, and it doesn’t run in families.

What are the symptoms for this cancer?

Dr. Cole: Usually profound fatigue. Patients can also feel anemic, have shortness of breath. They may have a sallow appearance. They can also have pain—unexpected, sudden pain and discomfort—in the bones.

Why are we more likely to be diagnosed with multiple myeloma than our white counterparts?

Dr. Cole: We don’t have the specifics of why African Americans are more likely to get it. It’s not linked to socio-economic status. It’s likely linked to a genetic cause that is the difference between the races.

Why is it important for the African-American community to know about this disease? And where can they get more information?

Dr. Cole: Empowerment and dissemination of knowledge is critical for this disease. We talked earlier about people not knowing much about this disease. This is how we change that. My Multiple Myeloma has information for patients and caregivers and news about clinical trials.

[Photo: University of Michigan]

The post Craig Cole, M.D. Dropping the Knowledge About Multiple Myeloma appeared first on Black Health Matters.

• Your risk of disease progression. Multiple myeloma varies between people. In some, it progresses slowly with few symptoms. In others, it can be more aggressive, progressing quickly and keeping doctors scrambling for the best therapy. The more aggressive the disease, the higher the risk it will progress. Your doctor will analyze a sample of your bone marrow. Depending on which DNA sequences are found in the sample, you’ll be classified as having high, intermediate or standard risk.
• Your suitability for a stem cell transplant. Your doctor also will order tests to determine whether or not you’re a candidate for a stem cell transplant, a procedure to replace your diseased bone marrow with healthy bone marrow. If you’re considered a good candidate, your doctor will discuss the procedure and its risks with you.

How do doctors determine your eligibility for a transplant? They take into account these factors:

• Age. A stem cell transplant usually isn’t recommended if you’re 75 or older. But some older adults in very good health may be offered a reduced-intensity stem cell transplant, which uses lower doses of chemotherapy.
• Other medical conditions. If you have chronic health problems, such as serious heart, kidney, liver or lung disease, you may not be eligible for a stem cell transplant.
• Previous treatments. If you haven’t had a lot of treatment for your multiple myeloma, you have a better chance of responding positively to a stem cell transplant.

If you’re a go for a stem cell transplant, understand that while it won’t cure your disease, it can increase the success of your treatment. The typical approach is:
Initial therapy. If you have a standard risk of your multiple myeloma progressing, your doctor will probably recommend treatment with an initial therapy—a combination of chemotherapy, biological therapy, targeted therapy and corticosteroids—for two to four months. The goal is to reduce the number of cancer cells and ease your symptoms before the transplant.
Stem cell transplant. After initial therapy, stem cells will be harvested from your bone marrow or blood. After enough stem cells are collected and stored, it’s recommended you have the transplant immediately after recovering from the harvesting procedure.
You may be able to delay stem cell transplantation if you have a standard risk for disease progression. But if your risk of progression is intermediate or high, delaying the procedure will likely not be an option.
If you’re not approved for a stem cell transplant, your doctor will choose one or more of the following options:

• Initial therapy. In this case, initial therapy is given for up to a year and isn’t followed by a stem cell transplant. Corticosteroids are often combined with chemotherapy to reduce side effects. And interferon, a hormone-like drug that can help keep the condition in remission after chemo, often is included, too.
• Immunotherapy. When antibodies are used to attack cancer cells, it is called immunotherapy. This is usually reserved for patients who have not had success with other treatments.
• Radiation therapy. In this treatment, a beam is directed from a machine to a bone or other affected part of the body. The beam’s rays kill plasma cells, easing pain and strengthening weakened bone.
• Clinical trials. Since we’re still searching for the best treatment for multiple myeloma, new drugs are being tested in clinical trials. Talk to your doctor about participating in a clinical trial for access to these new therapies.

Some treatments for multiple myeloma may be more suitable than others. Talk with your doctor about what options are best based on the factors that apply to you.

The post Multiple Myeloma: Choosing the Right Treatment appeared first on Black Health Matters.

Rheumatoid arthritis (RA) is a long-term disease that leads to inflammation of the joints and surrounding tissues. It can also affect other organs.

Causes

The cause of RA is unknown. It is an autoimmune disease, which means the body’s immune system mistakenly attacks healthy tissue. RA can occur at any age, but is more common in middle age. Women get RA more often than men. Infection, genes, and hormone changes may be linked to the disease.

Symptoms

RA usually affects joints on both sides of the body equally. Wrists, fingers, knees, feet, and ankles are the most commonly affected.

The disease often begins slowly, usually with only minor joint pain, stiffness, and fatigue.

Joint symptoms may include:

Morning stiffness, which lasts more than one hour, is common. Joints may feel warm, tender, and stiff when not used for an hour.
Joint pain is often felt on the same joint on both sides of the body.
Over time, joints may lose their range of motion and may become deformed.
Other symptoms include:

Chest pain when taking a breath (pleurisy)
Dry eyes and mouth (Sjogren syndrome)
Eye burning, itching, and discharge
Nodules under the skin (usually a sign of more severe disease)
Numbness, tingling, or burning in the hands and feet
Sleep difficulties
Tests

There is no test that can determine for sure whether you have RA. Most patients with RA will have some abnormal test results, although for some patients, all tests will be normal.

Two lab tests that often help in the diagnosis are:

Rheumatoid factor test
Anti-CCP antibody test
Other tests that may be done include:

Complete blood count
C-reactive protein
Erythrocyte sedimentation rate
Joint ultrasound or MRI
Joint x-rays
Synovial fluid analysis
Treatment

RA usually requires lifelong treatment, including medications, physical therapy, exercise, education, and possibly surgery. Early, aggressive treatment for RA can delay joint destruction.

MEDICATIONS

Disease modifying antirheumatic drugs (DMARDs): These drugs are the first drugs usually tried in patients with RA. They are prescribed in addition to rest, strengthening exercises and anti-inflammatory drugs. Methotrexate is the most commonly used DMARD for rheumatoid arthritis. Leflunomide and chloroquine may also be used. These drugs may have serious side effects, so you will need frequent blood tests when taking them.
Anti-inflammatory medications: These include aspirin and nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen and naprosen. Although NSAIDs work well, long-term use can cause stomach problems, such as ulcers and bleeding, and possible heart problems. Celecoxib is another anti-inflammatory drug, but it is labeled with strong warnings about heart disease and stroke. Talk to your doctor about whether COX-2 inhibitors are right for you.
Antimalarial medications: This group of medicines includes hydroxychloroquine, and is usually used along with methotrexate. It may be weeks or months before you see any benefit from these medications.
Corticosteroids: These medications work very well to reduce joint swelling and inflammation. Because of long-term side effects, corticosteroids should be taken only for a short time and in low doses when possible.
BIOLOGIC AGENTS:

Biologic drugs are designed to affect parts of the immune system that play a role in the disease process of rheumatoid arthritis. They may be given when other medicines for rheumatoid arthritis have not worked. At times, your doctor will start biologic drugs sooner, along with other rheumatoid arthritis drugs.

Most of them are given either under the skin (subcutaneously) or into a vein (intravenously). There are different types of biologic agents:

White blood cell modulators include: abatacept and rituximab
Tumor necrosis factor (TNF) inhibitors include: adalimumab, etanercept, infliximab, golimumab and certolizumab
Interleukin-6 (IL-6) inhibitors: tocilizumab
Biologic agents can be very helpful in treating rheumatoid arthritis. However, people taking these drugs must be watched very closely because of serious risk factors:

Infections from bacteria, viruses, and fungi
Leukemia or lymphoma
Psoriasis
SURGERY

Occasionally, surgery is needed to correct severely damaged joints. Surgery may include:

Removal of the joint lining
Total joint replacement in extreme cases; may include total knee, hip replacement, ankle replacement, shoulder replacement and others
PHYSICAL THERAPY

Range-of-motion exercises and exercise programs prescribed by a physical therapist can delay the loss of joint function and help keep muscles strong.

Sometimes therapists will use special machines to apply deep heat or electrical stimulation to reduce pain and improve joint movement.

Joint protection techniques, heat and cold treatments, and splints or orthotic devices to support and align joints may be very helpful.

Frequent rest periods between activities, as well as 8 to 10 hours of sleep per night, are recommended.

NUTRITION

Some people with RA may have intolerance or allergies to certain foods. A balanced nutritious diet is recommended. It may be helpful to eating foods rich in fish oils (omega-3 fatty acids).

The post Rheumatoid Arthritis: It’s More Than Aching Joints appeared first on Black Health Matters.

Part 5: Cancer and Heart Disease Protection

• Protect your daughter’s baby feeders and potentially her life. Women who were breastfed as babies have a lower risk of getting breast cancer as adults. So many women will already get breast cancer—we need to help reduce that number any way we can.
• I don’t want my daughter to become a cancer statistic; she’s so much more than that. Your baby’s overall cancer risk is decreased by breastfeeding for at least six months, according to this study.
• My baby should get to decide what lifestyle choices will damage her DNA. I shouldn’t do that for her. My baby may make decisions when she’s older that will have negative consequences for her health, and that’s her right to do that. In the meantime, I want to give her a healthy start by lessening any DNA damage that occurs, which breastfeeding may do.
• Hodgkin’s disease is a horrible thing for a child to go through. No child should have to suffer from cancer, and in a perfect world they wouldn’t. Until science can find ways to save everyone from this awful disease, I will stick to breastfeeding, which has been shown to lower the risk.
• My baby’s best line of defense against leukemia and lymphoma comes from my breasts. Breastfeeding appears to reduce the risk of both leukemia and lymphoma, and that’s well worth any embarrassment I might feel breastfeeding in public.
• A neuroblastoma diagnosis is something I never want my baby to face. Babies should be learning to crawl and walk, not fighting cancer. Breastfed babies have a smaller risk of getting neuroblastoma.
• You’d be nuts not to breastfeed knowing it can protect your son’s testicles. If protecting your son’s family jewels matter to you, you’ll want to breastfeed. It may reduce the risk of testicular cancer.
• Breast milk puts the skids on tumor growth. Stopping malignant tumor growth is just what the doctor ordered. This study showed glycoprotein in breast milk may reduce tumor growth.
• Hypertension runs in my family, and it makes my blood pressure rise just thinking my child will be affected. The fact that small children can suffer from pre-hypertension is mind boggling. I think of that as something that strikes people in middle age. If breastfeeding can keep my baby’s blood pressure down, it’s worth the effort.
• My new favorite magic trick is warding off cardiovascular disease using only my nipples. Cardiovascular disease is scary stuff. One minute, you’re fine; the next, you could be toes up in the morgue. The damage occurs over the course of decades, so I’ll take all the steps I can along the way to protect my baby.
• I worry about my cholesterol all the time. I shouldn’t have to worry about my baby’s. Cholesterol appears to be lower among breastfed babies when they become adults, which is another reason for me to breastfeed.

Check back tomorrow for Part 6 of “The 111 Benefits of Breastfeeding.” Or catch up on Part 1 here, Part 2 here, Part 3 here and Part 4 here

The post The 111 Benefits of Breastfeeding—Part 5 appeared first on Black Health Matters.

Some of the complications, such as heart disease and diabetes, are ones everybody has to deal with as they get older. Some are connected to a weakened immune system, even a person’s virus is under control. Some health problems are the result of bad lifestyle choices, like smoking and drinking alcohol. And still others are caused by the side effects of medication use.

“Newer HIV medications have very little toxicity compared to older ones, but those lucky enough to survive for decades may be subject to chronic medication side effects,” J. Wesley Thompson, a physician’s assistant at Rosedale Infectious Diseases in Rosedale, North Carolina, told Everyday Health.

Below, we describe the nine most common health issues for people living with HIV and provide tips to help minimize them:

Cancer. People with HIV are at a higher risk of developing certain cancers, including liver, lung, anus, cervix and blood (non-Hodgkin and Hodgkin lymphoma), according to the National Cancer Institute. That’s why routine cancer screenings are imperative. Men with HIV, especially those who have sex with men, should be screened regularly for anal cancer. Women with HIV should have regular cervical cancer screenings. People who smoke should stop; it’s the best way to avoid lung cancer.

Diabetes. Some HIV medications boost the risk of a diabetes diagnosis. Before starting a patient on any of those meds, a doctor should test his blood sugar levels. The risk of diabetes increases with age, so it’s a good idea to lower that risk by exercising, maintaining a healthy weight and eating a healthy diet that includes fruits, lean protein and dairy, vegetables and whole grains.

Dementia. HIV can increase the risk of dementia. For this reason, medication holidays aren’t recommended. The best prevention? Take all medicine as directed.

Fatigue. Exhaustion is common with HIV, with fatigue a result of the virus itself or a side effect of treatment. To boost energy, follow a healthy lifestyle. Eat healthy meals, exercise and get adequate sleep.

Fungal infections. A weakened immune system increases the likelihood of opportunistic fungal infections, according to the Centers for Disease Control and Prevention. To prevent infections: Don’t dig in the garden without long pants, long sleeves and gloves. Avoid exposure to bird or bat droppings. And if a fungal infection develops, talk to the doctor about starting anti-fungal medication right away.

Heart disease. Men with HIV are at greater risk of atherosclerosis, the buildup of soft plaque in the arteries that feed the heart. In addition, some HIV medications also increase cholesterol levels. To prevent this exercise, eat a healthy diet, have cholesterol levels checked regularly and quit smoking.

Kidney disease. About one-third of all HIV patients have abnormal kidney function. Get regular lab tests of blood and urine to check for any kidney damage. Talk to health-care professionals about avoiding medications that may damage kidneys.

Shingles. Shingles, the virus that causes chickenpox, is more likely to affect people with HIV. Experts suggest getting the shingles vaccine.

Tuberculosis. Tuberculosis, or TB, a serious bacterial infection that affects the lungs, TB is the leading cause of death among people living with HIV worldwide, according to AIDS.gov. The CDC recommends people with HIV tested for TB.

With regular checkups, sticking to treatment plans, and following a healthy lifestyle, people with HIV can avoid many of the complications of the virus.

The post Manage HIV Complications appeared first on Black Health Matters.

If you recently found out you have multiple myeloma, or even if you’ve known it for some time, you might be experiencing feelings such as sadness or anxiety. These feelings are normal when you’re faced with a cancer diagnosis. It’s also common to have these feelings during cancer treatment. They likely will fade over time. But until then, you might need strategies to help you cope with these emotional side effects. Consider the following:
Learn as much as you can about multiple myeloma. Making informed decisions about your care can make you feel more in control of the situation. Ask your doctor about available treatment options and the benefits and risks of each. You can also find additional information at your local library or online, such as on the National Cancer Institute website.
Maintain a strong support system. Let your family and friends know you need emotional support. Consider joining a support group for people coping with cancer, where you can learn about strategies others have used to successfully cope with sadness and anxiety. You might even make new friends, which could have a positive impact on your well-being.
Ask your doctor if he or she can recommend cancer support groups in your area. Consider online support groups as well.

• American Cancer Society: Cancer survivors network. Connect with other people with cancer and their families through discussion boards, chat rooms and private CSN email addresses.
• International Myeloma Foundation: Smart patients multiple myeloma community. Learn about available treatments and clinical trials for multiple myeloma. Hear about the experiences of other people living with the condition, as well as the experiences of their families and caregivers.
• Cancer Hope Network: Talk with a cancer survivor. Talk with or engage in a live chat with a cancer survivor who’s faced and recovered from a situation similar to yours.
• You can find more support groups by visiting the International Myeloma Foundation website.

Take care of yourself. Cancer treatment can put a lot of stress on your mind and body, so it’s important to minimize stress in other areas of your life. Prevent or reduce stress by adopting or continuing to practice healthy habits:

• Eat a healthy diet.
• Get lots of rest.
• Take part in activities you enjoy.
• Spend time with people you care about.
• Exercise. Exercise can raise your energy level and help you feel better. Make sure to talk to your doctor before you begin an exercise program.

What if emotional side effects persist? If your sadness doesn’t fade or worsens over time or if it starts to get in the way of your daily life, you may be experiencing depression, which may require treatment. Tell your doctor if you have any of the following symptoms persisting most of the day, nearly every day:

• Feeling sad, empty or worthless
• Feeling irritable, frustrated or angry over small matters
• Loss of interest or pleasure in activities you used to enjoy
• Difficulty falling or staying asleep, or sleeping too much
• Lack of energy even for small tasks
• Excessive worrying that may be accompanied by compulsive behaviors, such as pacing and hand-wringing
• Slowed ability to think, speak or move your body
• Thinking obsessively about past failures, or blaming yourself for things you couldn’t control
• Trouble concentrating, making decisions and remembering things
• Thoughts of suicide
• Headaches, back pain or other physical problems with no physical cause

If you have depression, your doctor might prescribe medication to help manage your symptoms. He or she may also suggest you see a therapist for additional support.

The post Coping With a Multiple Myeloma Diagnosis appeared first on Black Health Matters.

A recent study involving nearly 1.5 million participants has found that exercise—or as the researchers call it, a higher level of “leisure-time physical activity”—is associated with lower risk in a substantial number of cancers, bolstering previous evidence of exercise’s role in cancer risk reduction. The findings, published in JAMA Internal Medicine, further indicate exercise can reduce the risk of cancer despite body size or smoking history. In other words, even if you’re overweight and a smoker, you can still cut down your cancer risk if you get up and move.

“Size matters in epidemiologic studies because it gives you greater power to detect associations and to examine effects in subgroups,” said Dr. Anne McTiernan, a cancer prevention researcher at Fred Hutchinson Cancer Research Center. This study, she said, “was huuuuuge.”

Led by researchers at the National Cancer Institute, the epidemiological study cobbled together a dozen large U.S. and European prospective cohorts (groups of study participants who’d been followed for a number of years) in order to create a mega-pool of 1.44 million men and women. They then analyzed the participants’ information—their age, gender, body mass index, smoking status, self-reported data on exercise and, if applicable, cancer diagnoses—to determine the effect exercise had on various cancers. All told, 186,932 primary cancers were diagnosed during the follow up period (median follow-up was 11 years).

The evidence was significant. Exercise, already known to reduce the risk of heart disease and colon, breast and endometrial cancers, substantially lowered cancer risk in 13 of the 26 cancers examined, many by more than 20 percent.

And the benefit was much higher than that in some cases.

The risk of esophageal adenocarcinoma dropped by a whopping 42 percent in people who were active, and exercise cut the risk of liver and lung cancer by 27 and 26 percent, respectively. Working out also led to a 23 percent reduced risk for kidney cancer and a 22 percent reduced risk for gastric cardia (a type of stomach cancer).

Other cancer risks dropped as follows: endometrial by 21 percent; myeloid leukemia by 20 percent; myeloma by 17 percent; colon by 16 percent; head and neck by 15 percent; rectal by 13 percent; bladder by 13 percent and breast by 10 percent.

Conversely, exercise increased the risk of malignant melanoma by 27 percent, although researchers believed this was due to increased sun exposure since this association was most often found in areas with high ultraviolet radiation from the sun.

‘No need to become an athlete.’

Exercise was also associated with a 5 percent bump in early stage prostate cancer but researchers chalked this up to the fact that physically active men are more likely to see a doctor and get screened than inactive men. The 5 percent rise, they concluded, was most likely “screening bias,” since there was no observed bump in advanced prostate cancers among active men.

Despite mountains of evidence showing the benefits of exercise, half the population of the U.S. does not meet the recommended physical activity levels (worldwide, the physical inactivity level is 31 percent).

According to the U.S. Surgeon General’s guidelines, for “substantial health benefits,” adults should do at least 150 minutes a week of moderate-intensity aerobic physical activity, with the exercise spread throughout the week rather than performed in one massive workout session. The guidelines also recommend strength-training that’s “moderate or high intensity and involves all major muscle groups” two days a week.

“The aerobics can be brisk walking,” McTiernan said. “[There’s] no need to become an athlete.”

But keep in mind: the more you exercise, the greater the health benefits. According to the U.S. guidelines, if you want more extensive health benefits, shoot for five hours a week of moderate-intensity exercise (or 150 minutes of vigorous-intensity aerobic activity).

McTiernan, who has conducted numerous studies on exercise as it relates to cancer prevention and survivorship, called the NCI study well-designed and well-conducted, and said the data used was from “very, well-respected cohort studies,” including the American Cancer Society’s Cancer Prevention Study; the Swedish Cancer Society and NCI’s Women’s Lifestyle and Health Study; and the Women’s Health Study and Physicians’ Health Study at Brigham and Women’s Hospital and Harvard Medical School.

There were some drawbacks, however. Although participants were fairly evenly split gender-wise, most of the participants were white, providing little information on the cancer-busting benefits of exercise in minorities. Information on the type of exercise was also limited, McTiernan said, with most of the activity recorded being aerobic (think running, walking, jogging or biking).

“It gives no information on associations with strength training,” she said. “Based on these findings, we can’t say what exercise and how much.”

She also noted the participants’ physical activity was all self-reported, which could be problematic since researchers have discovered that “people over-report their level of activity.”

Despite the drawbacks, McTiernan was enthusiastic about the findings and their public health implications.

“I’d say it’s one more reason to stay active,” she said. “It’s not a guarantee but it’s probably going to reduce risk for several cancers.”

And considering the bump in malignant melanoma, she added this advice: “Those who choose to exercise outdoors, which I highly recommend, need to use sun protection to avoid the adverse effect of sun on melanoma and other skin cancers.”

From Fred Hutch News Service

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Heather Keets Wright didn’t spend 2012 the way she thought she would. One night in January she was watching TV and her hand brushed against something unusual.
“I felt a tumor on my left side under my arm, kind of under my armpit,” the Gastonia, North Carolina, resident says. “It just so happened I was laying that way and had my hand there. I wasn’t doing a self-exam; I wouldn’t have gone back that far if I’d been doing a self-exam. It wouldn’t even have been seen on a mammogram. It felt different. I said, ‘This is weird; this is not right.'”
Within two days Keets Wright had an ultrasound, a biopsy and a diagnosis: breast cancer. “I was in meetings all that day,” she says. “I noticed they’d called three times, so that’s when I knew.”
She shared the news with her husband, Mark, but they decided not to tell their three children (19-year-old Danielle; Max, 11; and Marco, 8) right away. There were oodles of tests and a learning curve, and the couple wanted to wait until they had all the information.
“When I knew I was having my surgery, that’s when I sat the kids down,” Keets Wright says. “Mark told Danielle. I knew I’d be hysterical. She was away at school, and I didn’t want to upset her at school.”
“I told Max. I purposely never used the words ‘breast cancer.’ Max is familiar with cancer from science class. But more importantly, he has a classmate whose father has leukemia, and he has been physically affected. He’s in wheelchair and has a breathing tube. I didn’t want Max to associate his classmate’s dad’s cancer with my cancer,” she explains. “I told him I’d gone for my annual exam and they found a tumor on the left side of my boob. He said he knew what a tumor was. I told him it was small—the size of a plain Man and M. He said, ‘Mom, that’s exactly what happened to the tallest man in the world. He had a tumor on the gland in your brain that makes you grow.’ It was so sweet, ’cause that’s how he processed it.”
They didn’t realize it at the time, but with her diagnosis, Heather and Mark joined a large group. One in four people with cancer in this country has a child. And though talking to your children about a cancer diagnosis might be difficult, the experts say it’s important to give them information about your disease.
Children of parents with cancer may have higher rates of anxiety, especially if they are not well informed, says Martha Aschenbrenner of the Children’s Cancer Hospital at M.D. Anderson in Houston. Children sense when something is amiss within their family, and they may assume a parent’s illness is somehow their fault.
Aschenbrenner recommends parents respond to these fears with honest and the three Cs: “It’s called cancer; it’s not catching; and it’s not caused by anything they did or didn’t do.”
Additionally, how children will react depends on their age. A younger child may only repeat what a parent said, but children 6 to 11 might need specific details. Teens are more likely to withdraw.
Keets Wright took her cues from her children’s personalities. During her initial conversation with Max, she only discussed her diagnosis and told him she was going to have surgery. “I didn’t tell him about chemo at that time because I knew he couldn’t process that, too,”she says. “Marco was only 7 [at the time], so we just told him Mommy had to go into hospital for surgery.”
Danielle, the oldest, dealt with the news in her own way. “She said when Daddy first told her she broke down and cried,” Keets Wright says. “Then she prayed about it and felt better instantly. We’ve since talked about making sure she does self-exams. We’ve talked a lot about what it felt like and how I found it.”
Aschenbrenner says don’t be too hard on yourself during this time. Everybody in the family will be learning. “Give yourself a break, and keep communication open,” she says.
It’s what Keets Wright did, in an effort to maintain as much normalcy as possible. After recovering from surgery (she had a double mastectomy), her sons thought she was back to normal. “Then I told them about chemo and that I might be a little bit more tired and that I might lose my hair. They were, like, ‘What? That’s the most ridiculous thing I’ve ever heard!’ Then Max said, ‘It’ll grow back.’ I don’t know how he knew that. He said it would be cool if it came back green.
“Danielle went into mother mode. She got out of school [for summer] just as I was having my first treatment in May. She grocery shopped, she cleaned the house, she went with me for shots, she drove. She took care of her brothers. It was eye opening for me ’cause you raise kids, but you think, ‘Are they going to be able to take care of me when I’m old?’ She did a good job.”
Though Keets Wright lost her hair during the ordeal, she kept her sanity and her sense of humor, maintaining a very funny online journal chronicling her road to recovery.
“It sucked, but I didn’t get that bad a diagnosis,” she says now. “It’s the kind you want to hear if you have breast cancer. It was caught early, it was small and I had choices in terms of treatment. Some women don’t have that. It was hard. Mark had to do double duty, but in the end they kids were just very comfortable. The blessing for me is that it has been as normal as it could possibly be. I don’t feel like it interrupted our lives much at all.”

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What Is Endometriosis?

Endometriosis is a common health problem in women. It gets its name from the word, endometrium, the tissue that lines the uterus or womb. Endometriosis occurs when this tissue grows outside of the uterus on other organs or structures in the body. Most often, endometriosis is found on the:

-Ovaries
-Fallopian tubes
-Tissues that hold the uterus in place
-Outer surface of the uterus
-Lining of the pelvic cavity

Other sites for growths can include the vagina, cervix, vulva, bowel, bladder, or rectum. In rare cases, endometriosis has been found in other parts of the body, such as the lungs, brain, and skin.

What Are the Symptoms of Endometriosis?

The most common symptom of endometriosis is pain in the lower abdomen or pelvis, or the lower back, mainly during menstrual periods. The amount of pain a woman feels does not depend on how much endometriosis she has. Some women have no pain, even though their disease affects large areas. Other women with endometriosis have severe pain even though they have only a few small growths. Symptoms of endometriosis can include:

-Very painful menstrual cramps; pain may get worse over time
-Chronic pain in the lower back and pelvis
-Pain during or after sex
-Intestinal pain
-Painful bowel movements or painful urination during menstrual periods
-Spotting or bleeding between menstrual periods
-Infertility or not being able to get pregnant
-Fatigue
-Diarrhea, constipation, bloating, or nausea, especially during menstrual periods

Recent research shows a link between other health problems in women with endometriosis and their families. Some of these include:
-Allergies, asthma, and chemical sensitivities
-Autoimmune diseases, in which the body’s system that fights illness attacks itself instead. These can include hypothyroidism, multiple sclerosis, and lupus.
-Chronic fatigue syndrome (CFS) and fibromyalgia
-Being more likely to get infections and mononucleosis
-Mitral valve prolapse, a condition in which one of the heart’s valves does not close as tightly as normal
-Frequent yeast infections
-Certain cancers, such as ovarian, breast, endocrine, kidney, thyroid, brain, and colon cancers, and melanoma and non-Hodgkin’s lymphoma

Why Does Endometriosis Cause Pain and Health Problems?

Growths of endometriosis are benign. But they still can cause many problems. To see why, it helps to understand a woman’s menstrual cycle. Every month, hormones cause the lining of a woman’s uterus to build up with tissue and blood vessels. If a woman does not get pregnant, the uterus sheds this tissue and blood. It comes out of the body through the vagina as her menstrual period.

Patches of endometriosis also respond to the hormones produced during the menstrual cycle. With the passage of time, the growths of endometriosis may expand by adding extra tissue and blood. The symptoms of endometriosis often get worse.
Tissue and blood that is shed into the body can cause inflammation, scar tissue, and pain. As endometrial tissue grows, it can cover or grow into the ovaries and block the fallopian tubes. Trapped blood in the ovaries can form cysts, or closed sacs. It also can cause inflammation and cause the body to form scar tissue and adhesions, tissue that sometimes binds organs together. This scar tissue may cause pelvic pain and make it hard for women to get pregnant. The growths can also cause problems in the intestines and bladder.

Who Gets Endometriosis?

More than five million women in the United States have endometriosis. It is one of the most common health problems for women. It can occur in any teen or woman who has menstrual periods, but it is most common in women in their 30s and 40s.
The symptoms of endometriosis stop for a time during pregnancy. Symptoms also tend to decrease with menopause, when menstrual periods end for good. In some cases, women who take menopausal hormone therapy may still have symptoms of endometriosis.

What Can Raise My Chances of Getting Endometriosis?

You might be more likely to get endometriosis if you have:
-Never had children
-Menstrual periods that last more than seven days
-Short menstrual cycles (27 days or less)
-A family member (mother, aunt, sister) with endometriosis
-A health problem that prevents normal passage of menstrual blood flow
-Damage to cells in the pelvis from an infection
-How Can I Reduce My Chances of Getting Endometriosis?
-There are no definite ways to lower your chances of getting endometriosis. Yet, since the hormone estrogen is involved in thickening the lining of the uterus during the menstrual cycle, you can try to lower levels of estrogen in your body.
-To keep lower estrogen levels in your body, you can:
-Exercise regularly
-Keep a low amount of body fat
-Avoid large amounts of alcohol and drinks with caffeine

Why Is It Important to Find Out If I Have Endometriosis?

The pain of endometriosis can interfere with your life. Studies show that women with endometriosis often skip school, work and social events. This health problem can also get in the way of relationships with your partner, friends, children and co-workers. Plus, endometriosis can make it hard for you to get pregnant.

Finding out that you have endometriosis is the first step in taking back your life. Many treatments can control the symptoms. Medicine can relieve your pain. When endometriosis causes fertility problems, surgery can boost your chances of getting pregnant.

How Do I Know That I Have Endometriosis?

If you have symptoms of this disease, talk with your doctor or your obstetrician/gynecologist (OB/GYN). An OB/GYN has special training to diagnose and treat this condition. Sometimes endometriosis is mistaken for other health problems that cause pelvic pain and the exact cause might be hard to pinpoint.

The doctor will talk to you about your symptoms and health history. The doctor may also do these tests to check for clues of endometriosis:

-Pelvic exam. Your doctor will perform a pelvic exam to feel for large cysts or scars behind your uterus. Smaller areas of endometriosis are hard to feel.

-Ultrasound. Your doctor could perform an ultrasound, an imaging test to see if there are ovarian cysts from endometriosis. During a vaginal ultrasound, the doctor will insert a wand-shaped scanner into your vagina. During an ultrasound of your pelvis, a scanner is moved across your abdomen. Both tests use sound waves to make pictures of your reproductive organs. Magnetic resonance imaging (MRI) is another common imaging test that can produce a picture of the inside of your body.

-Laparoscopy. The only way for your doctor to know for sure that you have endometriosis is to look inside your abdomen to see endometriosis tissue. He or she can do this through a minor surgery called laparoscopy. You will receive general anesthesia before the surgery. Then, your abdomen is expanded with a gas to make it easy to see your organs. A tiny cut is made in your abdomen and a thin tube with a light is placed inside to see growths from endometriosis. Sometimes doctors can diagnose endometriosis just by seeing the growths. Other times, they need to take a small sample of tissue and study it under a microscope. If your doctor does not find signs of an ovarian cyst during an ultrasound, before doing a laparoscopy, your doctor may prescribe birth control pills to control your menstrual cycle. Sometimes this treatment helps lessen pelvic pain during your period. Some doctors may offer another treatment that blocks the menstrual cycle and lowers the amount of estrogen your body makes before doing a laparoscopy. This treatment is a medicine called a gonadotropin releasing hormone (GnRH) agonist, which also may help pelvic pain. If your pain improves on this medicine, the doctor will likely think that you have endometriosis.
Laparoscopy is often recommended for diagnosis and treatment if the pelvic pain persists, even after taking birth control pills and pain medicine.

What Causes Endometriosis?

No one knows for sure what causes this disease, but experts have a number of theories:

-Since endometriosis runs in families, it may be carried in the genes, or some families have traits that make them more likely to get it.
-Endometrial tissue may move from the uterus to other body parts through the blood system or lymph system.
-If a woman has a faulty immune system it will fail to find and destroy endometrial tissue growing outside of the uterus. Recent research shows that immune system disorders and certain cancers are more common in women with endometriosis.
-The hormone estrogen appears to promote the growth of endometriosis. So, some research is looking at whether it is a disease of the endocrine system, the body’s system of glands, hormones, and other secretions.
-Endometrial tissue has been found in abdominal scars and might have been moved there by mistake during a surgery.
-Small amounts of tissue from when a woman was an embryo might later become endometriosis.
-New research shows a link between dioxin exposure and getting endometriosis. Dioxin is a toxic chemical from the making of pesticides and the burning of wastes. More research is needed to find out whether man-made chemicals cause endometriosis.
-Endometrial tissue may back up into the abdomen through the fallopian tubes during a woman’s monthly period. This transplanted tissue could grow outside of the uterus. However, most experts agree that this theory does not entirely explain why endometriosis develops.

How Is Endometriosis Treated?

There is no cure for endometriosis, but there are many treatments for the pain and infertility that it causes. Talk with your doctor about what option is best for you. The treatment you choose will depend on your symptoms, age, and plans for getting pregnant.

-Pain medication. For some women with mild symptoms, doctors may suggest taking over-the-counter medicines for pain. These include ibuprofen (Advil and Motrin) or naproxen (Aleve). When these medicines don’t help, doctors may prescribe stronger pain relievers.
-Hormone treatment. When pain medicine is not enough, doctors often recommend hormone medicines to treat endometriosis. Only women who do not wish to become pregnant can use these drugs. Hormone treatment is best for women with small growths who do not have bad pain. Hormones come in many forms including pills, shots, and nasal sprays.

Common hormones used for endometriosis include:
-Birth control pills to decrease the amount of menstrual flow and prevent overgrowth of tissue that lines the uterus. Most birth control pills contain two hormones, estrogen and progestin. Once a woman stops taking them, she can get pregnant again. Stopping these pills will cause the symptoms of endometriosis to return.

-GnRH agonists and antagonists greatly reduce the amount of estrogen in a woman’s body, which stops the menstrual cycle. These drugs should not be used alone because they can cause side effects similar to those during menopause, such as hot flashes, bone loss, and vaginal dryness. Taking a low dose of progestin or estrogen along with these drugs can protect against these side effects. When a woman stops taking this medicine, monthly periods and the ability to get pregnant return. She also might stay free of the problems of endometriosis for months or years afterward.

-Progestins. The hormone progestin can shrink spots of endometriosis by working against the effects of estrogen on the tissue. It will stop a woman’s menstrual periods, but can cause irregular vaginal bleeding. Medroxyprogesterone (Depo-Provera) is a common progestin taken as a shot. Side effects of progestin can include weight gain, depressed mood, and decreased bone growth.

-Danazol is a weak male hormone that lowers the levels of estrogen and progesterone in a woman’s body. This stops a woman’s period or makes it come less often. It is not often the first choice for treatment due to its side effects, such as oily skin, weight gain, tiredness, smaller breasts, and facial hair growth. It does not prevent pregnancy and can harm a baby growing in the uterus. It also cannot be used with other hormones, such as birth control pills.

-Surgery. Surgery is usually the best choice for women with severe endometriosis—many growths, a great deal of pain, or fertility problems. There are both minor and more complex surgeries that can help. Your doctor might suggest one of the following:
Laparoscopy can be used to diagnose and treat endometriosis. During this surgery, doctors remove growths and scar tissue or burn them away. The goal is to treat the endometriosis without harming the healthy tissue around it. Women recover from laparoscopy much faster than from major abdominal surgery.

-Laparotomy or major abdominal surgery that involves a much larger cut in the abdomen than with laparoscopy. This allows the doctor to reach and remove growths of endometriosis in the pelvis or abdomen.

-Hysterectomy is a surgery in which the doctor removes the uterus. Removing the ovaries as well can help ensure that endometriosis will not return. This is done when the endometriosis has severely damaged these organs. A woman cannot get pregnant after this surgery, so it should only be considered as a last resort.

How Do I Cope With a Disease That Has No Cure?

You may feel many emotions—sadness, fright, anger, confusion, and loneliness. It is important to get support to cope with endometriosis. Consider joining a support group to talk with other women who have endometriosis. There are support groups on the Internet and in many communities.

It is also important to learn as much as you can about the disease. Talking with friends, family, and your doctor can help.

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