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.

Black Health Matters Harlem Week Health Summit welcomed patient advocates and healthcare professionals to discuss the importance of sharing information about APOL1-mediated kidney disease. Kemi Williams, PhD, MBA, described the disease’s relationship with the Black community.

“This is a rapidly progressing chronic kidney disease that disproportionately affects people of West African ancestry, particularly African Americans,” she said.

“Knowledge and awareness of the disease is very low,” she added. “We’re hoping to change that today.”

Most of us who have kidney disease don’t know it.

Daryl O. Crenshaw, MD, noted the horrific impact of the limited awareness. “We understand now that about 37 million Americans have kidney disease, but the caveat is that most do not know they have it,” he said.

“At least 50 percent of Black Americans have at least one of the APOL risk variants, and having two of the APOL risk variants increases your chance of developing kidney disease.”

Kidney disease can lead to serious complications like kidney failure. “African Americans develop kidney failure at rates 4–5 times higher than Americans of European descent,” according to Trends in Endocrinology and Metabolism.

Joshua Albright discovered his kidney disease by accident.

Patient advocates and brothers Joshua and Jorden Albright shared their family’s experience with APOL1-mediated kidney disease.

Joshua accidentally learned about his kidney issues when visiting a family member impacted by kidney disease. “My aunt had given a kidney away to another family member, and we stopped by her house basically just to check on her, and she had a blood pressure machine out so she could check her blood pressure, and my sister and my cousins were playing around with the blood pressure machine. They put the cover on my arm, and my levels were extremely high,” he said.

It didn’t bother him much. His youth deceived him into believing it wasn’t a big deal. “At that time, I was 17, turning 18. I couldn’t care less what my blood pressure said, to be honest. I was trying to go see what the plan was that night with my friends,” he said.

Joshua’s mother thought there was something wrong and immediately called his PCP.

His mother and doctor took it seriously. “My mom actually reached out to my primary care doctor, and they let her know that I should be rushed to urgent care just to get a follow-up kind of,” said Joshua.

“Shout out to all those mothers and sisters out there that are being the healthcare advocates and warriors within their families, pushing them to get a test,” interjected Williams.

After discovering that his brother had the APOL-1 gene variant, Jorden got tested as well, and he had a different one.

Following his brother’s diagnosis, Jorden was diagnosed as well. The family was attuned to the risk. “I’m very, very blessed that my brother was diagnosed,” he said. “We learned that Josh had the G1 variation. I had the G2.”

How Joshua made clinical trial participation work while a college student.

Joshua was open about his decision to participate in a clinical trial. One reason he didn’t hesitate was that there were concerns about his privacy as a college student and his quality of life. He believes it is essential to focus on the patient’s life outside of their medical concerns in clinical trials. “I was diagnosed right before college. They gave me the flexibility to be able to coordinate at-home visits,” he said.

“I remember when I was in college, I was a little bit…I felt like I looked at my kidney disease as a weakness. I didn’t want everybody in the dorms knowing I had a nurse coming to check on me, so I would actually go all the way home to my parents’ house, and they would have a nurse meet me there. I’d have at-home visits.”

“It” puts the patient first.”

Resources

Trends in Endocrinology & Metabolism

The post What’s In Them Genes? Let’s Learn About AMKD 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.

Wenora Johnson, President, Board of Directors

Wenora’s journey into advocacy started with a life-altering diagnosis. “My goal at that time was just to survive,” she recalls, reflecting on her stage 3b colorectal cancer diagnosis at age 44. It wasn’t until a genetic test revealed Lynch syndrome that the full scope of her situation became clear.

Lynch syndrome, also known as hereditary non-polyposis colorectal cancer (HNPCC), is the most common cause of hereditary colorectal (colon) cancer. “It had actually been sitting there for 15 years,” she realized, stressing the importance of knowing your family history and getting early screenings.

The genetic testing experience became a defining moment, leading Wenora to FORCE. “Testing positive for being a Lynch syndrome carrier highlighted the importance of understanding one’s genetic risks”, she explains. Wenora started as a peer navigator, supporting others facing similar diagnoses.

Her involvement with FORCE expanded, leading to her serving on the board and eventually becoming board president. “These people are genuine scientists and geneticists behind the scenes, providing information to help individuals make choices,” she emphasizes, highlighting FORCE’s commitment to reliable information.

Much of her advocacy work centers on dispelling misconceptions about clinical trials and encouraging greater participation from people of color. “If we don’t, then we lose,” she states. Representation in research is vital. Her experience participating in a Lynch syndrome vaccine trial reemphasizes her commitment to ‘walk the walk.’

“FORCE is that beacon of light when we’re looking for information,” she concludes, again stressing the organization’s role in breaking down barriers, providing accurate information, and empowering individuals to take control of their health. She wants to ensure that future generations, including her grandchildren, can access reliable resources and support.

Verinda Hobbs,  Partnerships Strategy Manager

Her connective story began with her sister’s breast cancer diagnosis in 1993, at just 28 years old, and at a time when it was common for the medical community to overlook the possibility of a cancer diagnosis because of her age. This wasn’t just a family tragedy; it was a wake-up call. Her family realized they didn’t talk about health history enough, and doctors weren’t asking the right questions. “We don’t know if she hadn’t been so young, or if she hadn’t been Black, if there would have been different treatment options offered to her,” she says, highlighting how crucial it is to be your own advocate. Unfortunately, Verinda’s sister lost her battle with breast cancer a few years later, at age 32.

Then, the discovery of a BRCA1 gene mutation in a cousin prompted a deeper dive into their family’s health history, revealing a pattern of aggressive cancers.

This led Verinda and another sister to undergo genetic testing, confirming their own BRCA1 carrier status. “In a way, having a gene mutation almost gives you…the ability to chart my own destiny,” she explains, highlighting her proactive approach to managing her genetic risks. This included preventative surgeries and vigilant screenings.

Verinda initially found unwavering support with FORCE. The organization guided her journey and helped her navigate a path forward. Now, she’s passionate about helping others. Verinda became a patient advocate to “get information out there and help people become more aware” of hereditary cancers, stressing the importance of self-advocacy and understanding family history. She wants everyone to know that knowing your risks is empowering and that you don’t have to do this alone.

Juanita Rogers, Vice President,  Health Education & Communication

While her background is rooted in public health rather than personal cancer experience, Juanita’s commitment to FORCE stems from a deep concern for health disparities. Coming from a large family, Juanita understood that her family failed to have essential conversations around health, propelling her career in public health and education.

“Being empowered and feeling as though it’s not negative to have these conversations is what I would like to see for my family and for the Black community, as well,” She explained.

In her role, Juanita translates complex scientific information into accessible language, ensuring diverse audiences understand hereditary cancer risks. She emphasizes the importance of open communication about family health history, particularly within communities that have historically faced barriers to healthcare access. “It’s important to be able to feel empowered to ask questions and to achieve the most optimal health that you can,” she notes, advocating for proactive engagement with healthcare providers.

FORCE is crucial in disseminating accurate information and addressing misconceptions surrounding genetic testing and hereditary cancers.

“We do share information. I harp on X-RAY (Behind The Headlines) because it’s a great way to share real information and research in a plain language,” she states. FORCE also combats misinformation through its How to spot the BOAST feature and provides comprehensive resources on genetic counseling.

“Knowing that we are here for the community in various ways…is most important,” Juanita emphasizes, underscoring FORCE’s dedication to accessibility and support. She encourages individuals to view themselves as active participants in their healthcare, utilizing FORCE’s resources to make informed decisions about their genetic health.

What We Should Know

FORCE is an invaluable resource on the types of hereditary cancers and what we need to know about them. While 10-20% of all cancers are believed to be caused by an inherited mutation (hereditary cancer), it is crucial to be well-informed on the types, signs, and the specifics on how inherited cancers are passed on from generation to generation.

FacingOurRisk.org shares a wealth of information on the types of cancers and their associated genes. Understanding how genes are passed down from generation to generation, mother or father, and sometimes skipping generations, only amplifies the importance of families having the necessary health conversations to make proactive health decisions for everyone. They offer resources, support, and a sense of community but also empower individuals through awareness and encouragement.

Center for Disease Control: Lynch Syndrome

JAMA Oncology, March 2021, BRACA-1 Gene Research supported the need for more Black women to be tested.

The post Understanding Hereditary Cancer: When Genes Tell the Story appeared first on Black Health Matters.

Victoria Dibiaso MPH, Priscilla Pemu, MD,

Kasey Boynton, Constance D. Benson, Chris Lundy, BSCN

Victoria Dibiaso, MPH, Priscilla Pemu, MD, Kasey Boynton, Constance D. Benson, and Chris Lundy BSCN addressed the audience with vulnerability and expertise.

According to the Journal of American Medicine Pediatrics, “Sickle cell disease is one of the most common genetic disorders, affecting more than 100,000 individuals in the US and 20 million people worldwide.” It affects hemoglobin molecules through a genetic mutation.

Victoria Dibiaso, MPH,  explained the goals of clinical trials to the audience. “These are scientific research studies where we evaluate how well a new potential medicine works and how safe it is,” she said. “As you can imagine, it’s important that it’s tested in the diverse and representative patient population.”

Boynton revealed how a personal interaction deepened her commitment to furthering inclusion in clinical trials. She questioned a doctor who was recommending a medication to treat her mother’s blood clots about the trial’s diversity and was appalled to find that it did not include diverse participants. Ultimately, the medication did not work for her mother, and the family was forced to choose another option, something they could have done from the beginning with the proper information. “That hit it for me. That really fortified why it is that I do what I do. Because the reality is that if we aren’t participating in clinical trials, we’re not then able to know whether or not these drugs are safe and effective for our own community. And when it’s your mom sitting there, who’s struggling for her life, you really, you don’t know how to respond,” she said.

As the medical community works to establish trust and connection with the Black community, Black patients like Benson and Lundy add context to the discourse.

Lundy, a bone marrow transplant recipient on track to be free of sickle cell anemia for 25 years, also shared his experiences.

Benson shared her experience of being cured of sickle cell and receiving a bone marrow transplant. She also spoke about her isolation as a clinical trial patient without spaces like the summit to connect her to people who shared her experience. “The thing about it is when you’re the first person, you are the first person, there is nobody that you could talk to, nobody that you can ask how it went,” she said.

Lundy confirmed that it can be difficult to get relevant when participating in something new. “There’s a lot more questions than answers,” he said. He explained that he and Benson are working to change that by being transparent and making information readily available for those considering their options. “Being in this space, now we’re able to pass that torch and say, hey, I’ve done this here, I am exhibit A that you can do this.”

Lundy stressed the importance of including Black patients in clinical trials. “We in this community need to be a part of this and need to help each other out,” he said. “Clinical trials are extremely important. We know the history of the healthcare system and the Black community, but we’ve got to be able to get out there and step out on faith.”

Dr. Pemu shared the “exciting” shifts taking place in sickle cell treatments being furthered by clinical research. Therapies have become more proactive than reactive in recent years. “25 years ago, all we could do was wait for something to happen and try to manage it,” she said. Today, that has changed. “So it’s not just waiting for them to have a crisis but shifting the types of hemoglobin that they present with so that they’re not as likely to have a crisis.”

Boynton commented on the implications of clinical trials for future generations of Black people.

“It’s not just about, you know, our individual health, and why we participate in clinical trials, but it’s for our future, the generations that are going to come beyond us to say, hey, we want to make sure that these drugs are effective in our community,” said Boynton. “We want to make sure that when we’re sitting in the doctor’s office, and that doctor is saying, ‘Hey, we want you to take this drug,’ we can make an informed decision about whether or not we think that’s the best option for our care treatment.”

The post Rewind the Session: Clinical Trials – The Importance of Diversity, Community Engagement and Sickle Cell Disease Education 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.

Understanding how clinical trials work and why they are conducted will help you understand how impactful they are in the progression of medicine and other types of treatment.

What Happens During The Screening Process?

Clinical trial participants are screened heavily to ensure that every participant meets the requirements of the trial. If accepted into a clinical trial, you must complete the necessary paperwork agreeing to participation and undergo baseline assessments.

• Paperwork may include a consent form, contact information, an explanation of the trial and other trial details, and more.
• Assessments may include blood or urine tests, scans, a review of your medical history, and other potential tests relevant to the trial.
• You will have the opportunity to meet and speak with research staff (nurses, coordinators, doctors, etc.) and get answers to any questions.

What Happens After You’re Accepted?

Once you are accepted, the details of your participation will be explained to you so you understand your commitment. How involved you are will depend on the type of clinical trial study you are in and the trial’s goals. Don’t be shy. Feel free to ask questions.

Clinical trials are 100% at-will, so you can withdraw your participation without repercussions if you ever feel uncomfortable or unsafe.

Is There Compensation?

Compensation for clinical trials can vary based on things like the duration of the said trial, funding, and more. Per an article from Pub Med, compensation can range from a few hundred dollars to a few thousand, when applicable. Your research team will make this known to you during the entry process.

Are Clinical Trials Safe?

Safety is a top priority during a clinical trial; multiple checks are regularly conducted to ensure this. Teams of research nurses, doctors, coordinators, and others are put in place to monitor, document, and assist patients and researchers and ensure the processes proceed accordingly.

Where Are Clinical Trials Conducted?

Clinical trials are conducted in various medical centers, hospitals, and doctor’s offices.

How Long Do Clinical Trials Last?

There is no set length for clinical trials. The trial length depends on the type of treatment, illness, ongoing findings, the number of participants needed to complete the trial, and even a participant’s ability. A clinical trial can last from a year to a decade or more.

What Happens After The Trial Ends?

Once you’ve completed your time in a trial, you will be guided on how to conclude your participation. If any medical devices or support materials that need to be returned were given to you, now is the time to return them. The research team will help you transition to your primary healthcare team’s full-time care and treatment if applicable.

Many drugs in trials are being approved, so if you want to keep up with the study, you can ask the research team for details or check scientific journals and publications later. Trial data is public.

Participating in clinical trials can help impact the health and lives of many. Every test or treatment can save or improve a life. We must destigmatize what happens during clinical trials to encourage our community to get involved. Representation matters, and if over 80% of those participating in clinical trials are White, our community is vastly underrepresented.

To get an in-depth understanding of clinical trials, visit the National Institute of Health website.

If you want to participate in clinical trials, ask your healthcare provider or visit clinicaltrials.gov.

The post What To Expect When You Enroll in a Clinical Trial appeared first on Black Health Matters.

Obesity significantly raises the risk of numerous life-threatening diseases and conditions, many of which are preventable through early intervention and effective treatment. Understanding the health risks associated with obesity is crucial for both preventing these conditions

Type 2 Diabetes

One of the most well-known health risks associated with obesity is type 2 diabetes. Obesity and excess weight is associated with insulin resistance, a condition where the body’s cells become less responsive to insulin, the hormone that regulates blood sugar levels. Over time, this can result in high blood sugar levels, ultimately leading to type 2 diabetes. This condition increases the risk of complications such as nerve damage, kidney disease, and vision problems, and requires lifelong management through medication and lifestyle changes.

Maintaining a healthy weight through proper nutrition, exercise, and medical interventions can significantly reduce the risk of developing type 2 diabetes.

High Blood Pressure

High blood pressure, also known as hypertension, is another major health risk associated with obesity. Excess body fat, especially around the organs in the abdomen, increases the workload on the heart, leading to higher pressure in the arteries. Over time, this increased pressure can damage the blood vessels, which in turn raises the risk of heart disease, stroke, and kidney damage.

Hypertension often presents without noticeable symptoms, earning it the nickname “the silent killer.” Left untreated, high blood pressure can cause serious complications, including heart attack, heart failure, and stroke.

Heart Disease and Stroke

Obesity is a major contributor to the development of heart disease, the leading cause of death worldwide. Excess weight strains the heart, leading to conditions such as coronary artery disease (CAD) and congestive heart failure. People with obesity are also more likely to have high cholesterol and high blood pressure, both of which increase the risk of heart disease.

Similarly, obesity increases the risk of stroke. Strokes occur when the blood supply to the brain is interrupted, often due to a blood clot or a burst blood vessel. The increased pressure on the heart and arteries caused by obesity can contribute to these events, leading to long-term disability or even death.

Metabolic Dysfunction-Associated Steatohepatitis (MASH)

MASLD (Metabolic Associated Steatotic Liver Disease) and MASH (Metabolic Associated Steatohepatitis) are updated terms for conditions previously referred to as non-alcoholic fatty liver disease (NAFLD) and non-alcoholic steatohepatitis (NASH).

MASLD refers to the buildup of excess fat in the liver not caused by alcohol. It is associated with metabolic factors like obesity, type 2 diabetes, or insulin resistance. It is characterized by fatty liver without significant inflammation or liver damage.

MASH is the more severe form of Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD). It includes liver inflammation and damage, in addition to fat accumulation in the liver. It can lead to fibrosis (scarring) of the liver, cirrhosis, or even liver cancer if left untreated.

Cancer and Other Health Conditions

Obesity is a risk factor for many different types of cancer.

Additionally, obesity can play a role in the manifestation of other common health conditions such as:

• Sleep apnea
• Asthma
• Osteoarthritis
• Gout
• Kidney Disease
• Erectile dysfunction

Clinical Trials: A Path to Better Health Outcomes

More solutions are needed to treat obesity, and clinical trials are leading the way. If you are living with obesity and have experienced complications such as type 2 diabetes, high blood pressure, heart disease, or fatty liver disease, consider participating in a clinical trial.

Beyond personal benefits, participating in a clinical trial may also contribute to scientific advancement. By joining a trial, you may help researchers better understand obesity-related diseases and develop therapies that could improve the lives of millions of people worldwide. Click here to learn more about ongoing clinical trials.

References:

NIH. NIDDK.  Health Risks of Overweight and Obesity

OMA. What Is Obesity?

The post Obesity and Your Health: The Risks You Can’t Ignore appeared first on Black Health Matters.

The truth is, clinical trials play a major role in how treatments are developed, tested, and approved. When Black patients are involved from the start, we help shape care that’s more relevant to our needs.

Whether you’ve been recently diagnosed or living with UC for a while, here’s what the process of participating in clinical trials really looks like and how to feel confident with your decision to participate every step of the way.

Step 1: Find a Trial That Fits You

Not all trials are the same. Some are testing new medications. Others may be comparing current treatments or gathering health data from people who meet specific criteria. Start by asking your doctor if they know of any local UC studies. You may also visit websites like ClinicalTrials.gov and look for trials specifically focused on moderate to severe UC symptoms. Each trial has specific guidelines and requirements, like age or current health status. They may also require that you’ve tried previous treatments. This is to help researchers match you with the right study, keep you safe, and ensure your health needs align with study goals.

Step 2: Go Through Screening

Once you find a study you’re interested in, the research team will ask you some questions and review your medical history. This part is called screening. You might have lab work or other simple tests to see if the study is a good fit.

You’ll learn what the trial involves (number of visits, length of time, treatments used), possible risks and benefits, and the details of what your involvement entails.

You’ll also be asked to give informed consent, which means you understand what the study involves and agree to take part voluntarily.

Step 3: Participate With Support

If you’re eligible and decide to join, you’ll receive the study treatment and have regular check-ins. Some trials offer transportation help, childcare support, or small payments or other incentives for your time.

You’ll also get close monitoring from doctors and nurses, which sometimes includes even more specialized care than you would during a regular medical visit. Remember trial participation is a partnership. You can ask questions at any time, and you are in control of your body and health.

Step 4: What Happens After the Trial

Once the trial ends, the team may continue to check on you for a short period of time. In some cases, you may be able to keep receiving the treatment if it helped you and if it becomes available more widely.

Researchers will use the data (not your name or personal info) to see how well the treatment worked and how people of different backgrounds responded.

Your participation helps move science forward for the next generation.

Why It Matters for Our Community

Black people have long been left out of research. Not because we don’t care, but because the system hasn’t always made it easy or trustworthy. Today’s trials are held to high ethical standards, with protections in place for your rights, safety, and privacy.

Now that you know what to expect and how to confidently pursue clinical trial participation, click here to learn more and see if you may qualify.

References:

• Crohn’s & Colitis Foundation. What Should I Eat?
• S. Centers for Disease Control and Prevention. Ulcerative Colitis Basics
• National Institute of Diabetes and Digestive and Kidney Diseases. Ulcerative Colitis
• Crohn’s and Colitis Foundation. What is Ulcerative Colitis?
• Ulcerative colitis
• Liu JJ, Abraham BP, Adamson P, et al. The Current State of Care for Black and Hispanic Inflammatory Bowel Disease Patients. Inflamm Bowel Dis. 2023;29(2):297-307. doi:10.1093/ibd/izac124

The post Your Ulcerative Colitis Trial Guide: From Sign-Up to Follow-Up appeared first on Black Health Matters.

For many in the Black community, support goes beyond the doctor’s office. It’s found in barbershop conversations, group texts with family, prayer circles, and online spaces that speak our language. Do you know where to find trusted medical and emotional support that meets your needs and respects your journey?

1. Find a Specialist

Your primary care doctor may be the first person you talk to about your UC symptoms but it’s a gastroenterologist (GI doctor) who will usually diagnose and treat the condition. Finding one who understands your concerns, listens without judgment, and explains things clearly makes all the difference.

Do your research. Look for:

●     GI doctors with experience treating inflammatory bowel disease (IBD)

●     Providers who take time to answer questions

●     Black or Black-serving providers when possible, if that helps you feel more at ease

2. Build Your Village

Talking about UC can feel uncomfortable, especially if you’ve never met anyone else with it. Support groups offer a safe space to ask questions (in person and virtually), share tips, and cope with the feelings and emotions you may be dealing with. They offer real-life advice on diet, stress, and flares, encouragement when you’re feeling frustrated, and reminders that you can always ask for help. Look for UC groups through hospitals, advocacy organizations like the Crohn’s & Colitis Foundation, or community health centers.

Support doesn’t have to come from one place. It can be your best friend who checks in on you, your auntie who prays for you, or your partner who helps prep meals when you’re in a flare. UC may be a part of your story, but it doesn’t have to take over your whole life.

Lean on your people. Let them show up for you. If you haven’t found your UC community yet, it’s not too late.

3. Don’t Forget Mental Health Support

Chronic illness doesn’t just affect your body. It impacts your emotions, your relationships, and how you see yourself. If UC has left you feeling anxious, isolated, or discouraged, you deserve support for that too.

Talking to someone who understands chronic illness can help lighten the load. Some therapists specialize in working with people managing long-term conditions. Many now offer virtual sessions, so help is just a call or click away.

You Are Not Alone

There’s no “right” way to live with UC, but having support makes the road easier. When you connect with the right care, community, and conversations, you reclaim control and confidence.

Clinical trials offer support and resources for those living with UC. Click here to learn more and see if you may qualify.

References:

• Crohn’s & Colitis Foundation. What Should I Eat?
• S. Centers for Disease Control and Prevention. Ulcerative Colitis Basics
• National Institute of Diabetes and Digestive and Kidney Diseases. Ulcerative Colitis
• Crohn’s and Colitis Foundation. What is Ulcerative Colitis?
• Ulcerative colitis
• Liu JJ, Abraham BP, Adamson P, et al. The Current State of Care for Black and Hispanic Inflammatory Bowel Disease Patients. Inflamm Bowel Dis. 2023;29(2):297-307. doi:10.1093/ibd/izac124

The post Building Community: How to Find Support for Ulcerative Colitis appeared first on Black Health Matters.

You are not alone. While every UC journey is different, there are practical strategies that can make daily life more manageable. These tips can help you balance culture, community, and chronic illness.

1. Know Your Triggers

Stress, diet, and skipped medications are common flare-up triggers. More specifically, UC triggers can include emotional stress tied to work, family responsibilities, or even everyday life. Listen to your body and pay attention to how your body responds to different foods, routines, and stressors. Keeping a symptom journal whether in a physical notebook or digitally in an app or in your phone notes, can also help you connect symptoms and triggers.

2. Consider Diet Modifications

You don’t have to give up the foods and flavors you love to care for your gut. Adopting better food choices doesn’t have to be a daunting task. Simple swaps like switching from fried foods to baked when preparing your meals can make a big difference. Other adjustments that may be helpful include using milder spices or cutting back on dairy, alcohol, caffeine and red meat. It’s important to avoid foods that cause undesirable symptoms. Working with a registered dietitian may be helpful, especially one familiar with Black or Southern cuisine. It is possible to avoid potential trigger foods while still including foods you love and enjoy in your diet.

3. Prioritize Mental Health

Living with UC can take a toll on your mental and emotional health. Especially when you’re juggling symptoms that impact your daily routines. Therapy, journaling, faith-based support, or just having a trusted person to talk to can go a long way. Remember that you’re managing a chronic illness and its physical impact may affect you mentally and emotionally too.

4. Take Your Medicine

It’s tempting to ease up on medication or skip doctor’s visits when your symptoms calm down. But UC inflammation can be active even when it feels like it’s not. Staying on your treatment plan and checking in regularly with your doctor helps prevent long-term damage and discomfort. It gives you more control over your health in the long run.

5. Build a Care Team That Sees You

Whether it’s a gastroenterologist who listens to your concerns, a nurse who respects your boundaries, or a pharmacist who explains things clearly, your care team should make you feel heard. If something doesn’t feel right, you have the right to ask questions, speak up, or seek a second opinion. You deserve care that respects both your condition and your culture.

6. Find Community

UC can feel isolating, especially when it’s not openly talked about in your circles. But support is out there. Online forums, advocacy groups, and even wellness ministries can provide connection, encouragement, and tips that actually resonate. Sharing your experience whether with one friend or a whole community can be a healing part of your journey with UC.

You Are More Than Your Diagnosis

UC may be a part of your life, but it doesn’t define you. With the right tools, support, and information, it’s possible to live fully, feel strong, and take charge of your health on your own terms. Take control of your UC journey, one step at a time. Clinical trials are a practical way to do this while also receiving specialized care and helping to potentially shape the future of UC treatment. Click here to learn more.

References:

• Crohn’s & Colitis Foundation. What Should I Eat?
• S. Centers for Disease Control and Prevention. Ulcerative Colitis Basics
• National Institute of Diabetes and Digestive and Kidney Diseases. Ulcerative Colitis
• Crohn’s and Colitis Foundation. What is Ulcerative Colitis?
• Ulcerative colitis
• Liu JJ, Abraham BP, Adamson P, et al. The Current State of Care for Black and Hispanic Inflammatory Bowel Disease Patients. Inflamm Bowel Dis. 2023;29(2):297-307. doi:10.1093/ibd/izac124

The post 6 Tips for Black Patients Living with Ulcerative Colitis (UC) appeared first on Black Health Matters.

Let’s break down the most common flare trigger and how to reduce the risk of occurrence.

How Stress Affects UC

Stress doesn’t cause UC, but it may be related to worsening symptoms in some people. When you’re under emotional or physical pressure, your body produces more stress hormones which may affect immune function. Stress may also lead to behaviors that indirectly contribute to symptom changes.
Regular self-care routines, therapy, breathing exercises, or spiritual practices like prayer and meditation may help some people manage overall stress levels.

Diet and UC

Certain foods can trigger symptoms for some people with UC but diet choices don’t impact everyone the same way. Foods that may trigger one person might be perfectly fine for another.

In general, some foods that may be related to dietary triggers include:

●     Fried, greasy, or spicy foods

●     Dairy products

●     Red meat or processed meats

●     High-fiber foods

●     Alcohol and caffeine

• Sugary foods and beverages

Consider keeping a food and symptom diary to identify patterns. During flares, choose foods that are easier to digest. If you’re at a loss when it comes to diet or even if you have it under control and just want additional support, speak with a registered dietitian who can help in this area.

Medication Gaps Can Lead to Flares

Skipping UC medication can increase your chances of a flare. This is especially true if you’re on maintenance therapy designed to prevent inflammation from coming back. People often miss doses because they begin to feel better and don’t think the medication is needed. UC medication works best when it is taken consistently as prescribed.

Speak with your healthcare provider if you have concerns about side effects, safety, or medication cost.

If you’re considering stopping or adjusting your medication, talk to your provider first. There may be alternatives that better fit your lifestyle or preferences.

Staying Ahead of Your Triggers

Identifying and managing flare triggers takes time and self-awareness, but it’s a powerful part of living well with UC. The more you know about your body’s reactions to various triggers, the more control you have over your health.

Knowing your triggers is an important part of managing UC as a chronic health condition. Click here to learn more about UC and whether clinical trial participation may be a care option for you.

References:

• Crohn’s & Colitis Foundation. What Should I Eat?
• S. Centers for Disease Control and Prevention. Ulcerative Colitis Basics
• National Institute of Diabetes and Digestive and Kidney Diseases. Ulcerative Colitis
• Crohn’s and Colitis Foundation. What is Ulcerative Colitis?
• Ulcerative colitis
• Liu JJ, Abraham BP, Adamson P, et al. The Current State of Care for Black and Hispanic Inflammatory Bowel Disease Patients. Inflamm Bowel Dis. 2023;29(2):297-307. doi:10.1093/ibd/izac124
• Crohn’s & Colitis Foundation. What Should I Eat?

The post Stress, Diet & Ulcerative Colitis: What Triggers a Flare-Up? appeared first on Black Health Matters.

Until a stem cell transplant changed her life, Juliana’s experience was not unlike that of many of the estimated 100,000 people in the U.S. who are living with SCD. SCD is a group of inherited red blood cell disorders that affect hemoglobin, a protein that carries oxygen throughout the body. Normally, red blood cells are disc-shaped and flexible, allowing them to move easily through the blood vessels and deliver oxygen to cells and tissues. SCD gets its name because the abnormal hemoglobin protein causes some red blood cells to form a distinct crescent, or “sickle” shape, that can block the flow of blood and cause recurring episodes of intense pain.

People living with SCD often experience symptoms, including extreme tiredness and pain, as well as life-threatening conditions such as anemia, heart problems, and even stroke. Research supported by the National Heart, Lung, and Blood Institute (NHLBI) has helped advance the understanding of SCD and improved treatment options and clinical care. Now, there are several ways to manage SCD, including with medicines, blood transfusions, gene therapy, and bone marrow transplants.

Until recently, a bone marrow transplant was the only cure for SCD. But in December 2023, the U.S. Food and Drug Administration approved two new gene therapies for SCD. One therapy adds a healthy copy of a gene to the body, and the other makes changes to the DNA to turn off production of the sickle hemoglobin and turn on production of fetal hemoglobin, which is normally only found in the red cells of babies in the womb or shortly after birth. Researchers at the NHLBI are exploring other types of gene therapies that may help provide new SCD treatments.

After her treatment, Juliana was able to go to school and become a registered nurse. She loves working with her patients, some of whom are living with SCD themselves. Reflecting on her journey with SCD and her treatment, “I felt a huge difference. It was like day and night. My experience has made me a better nurse.”

For more information and resources about SCD and other blood diseases and disorders, visit the NHLBI’s Blood Diseases & Disorders Education Program. Visit NHLBI’s clinical trials page to see whether you or someone you love is eligible to take part in an NHLBI study on SCD.

The post Get to Know Sickle Cell Disease appeared first on Black Health Matters.

Dr. Pruitt has published more than 50 peer-reviewed articles in medical journals. His research interests include minority health affairs, sickle cell anemia, and HIV in minority populations.

He holds a certification in Good Clinical Practice and Trials from the Clinical Trials Network (CTN) and the National Institute on Drug Abuse (NIDA). He also serves as a member of the Institutional Biosafety Committee at Advarra Corporation. Dr. Pruitt is currently the chief medical research director for PBJ Medical Associates and the 7^th District Medical Health and Initiative chairman for Omega Psi Phi Fraternity, Inc.

Dr. Pruitt, an esteemed physician and medical scientist, provided us with an expert overview of lung cancer, covering everything you need to know, including an overview of the different types of lung cancer, lung cancer risk factors, diagnosis and screening, and how lung cancer affects the black community.

Black Health Matters: Let us begin with a basic but essential question: What do we need to know about lung cancer?

Dr. Pruitt: Lung cancer makes up about 13% of all cancers, but accounts for 90% of the cases of fatality. The peak incidence occurs between ages 75 and 79, and men are at slightly higher risk than women.

There are basically three major types of lung cancer: The majority of people with lung cancer have non-small cell lung cancer, so that’s what we will focus on.

Black Health Matters: Are there any significant risk factors or causes of lung cancer?

Dr. Pruitt: Cigarette smoking is a significant risk factor and causes an overwhelming percentage of cases. Other risk factors include radon gas, radiotherapy, family history, and chemical exposure.

Secondhand smoke exposure is an additional risk factor that shouldn’t be overlooked. Various studies have shown that exposure to secondhand smoke increases your chance of lung cancer by up to 20 to 30%.

Black Health Matters: As you mentioned, smoking and smoke exposure are major risk factors. Is cigarette smoke the only thing that should be avoided?

Dr. Pruitt: A lot of people come in and say, well, I don’t smoke cigarettes, I smoke cigars, or use e-cigarettes or vaping devices. It is essential to highlight that cigar smoke, like cigarette smoke, contains the same toxins and cancer-causing chemicals that are harmful to both smokers and non-smokers. Secondhand cigar smoke is possibly more toxic than cigarette smoke because cigar smoke has a higher level of cancer-causing substances.

So to answer your question, cigarette smoke is not the only thing that should be avoided because cigars and e-cigarettes can cause cancer as well. Marijuana, when smoked or inhaled, may also pose a potential risk.

Black Health Matters: What can someone undergoing lung cancer screening expect during the appointment?

Dr. Pruitt: If someone presents to the clinic for screening, we would obtain a basic medical history and perform a physical examination. If lung cancer is suspected, additional testing and imaging may be requested, such as X-rays or CT scans. The provider may look for signs of a tumor, scarring, or fluid buildup. They might also request a sputum test to test for cancer cells or other more invasive tests, such as a biopsy, which involves taking cells from the lung and examining them under a microscope or a bronchoscope, where a tube and built-in camera are inserted through the nose and into the lungs to determine if any cancer cells are present.

Black Health Matters: Can anyone request lung cancer screening?

Dr. Pruitt: It is recommended that lung cancer screening be done for high-risk individuals starting at age 50 through 80, and for individuals with an extensive smoking history, those who are currently smoking, or who have quit in the last 15 years.

Black Health Matters: How does lung cancer affect the Black community?

Dr. Pruitt: Black men are about 12% more likely to develop lung cancer than white men. That rate is about 16% lower in Black women than in white women, but the gap is closing.

According to the American Lung Association, Black individuals with lung cancer were about 15% less likely to be diagnosed early. As noted earlier, we can detect it at an earlier, more treatable stage, which improves longevity and survival rates. We are 19% less likely to receive surgical treatment, 11% more likely not receive any treatment, and 16% less likely to survive 5 years compared to white individuals.

Additionally, the eligibility criteria set for lung cancer screening previously were not ideal, especially for the Black population with an increased risk of lung cancer. We have now adjusted it to the goal of detecting more cases earlier and improving survival.

Black Health Matters: What advice do you have for those who have been diagnosed or are undergoing treatment for lung cancer?

Dr. Pruitt: Clinical trials provide access to treatments that have not yet reached the market. Sometimes, entering a clinical trial may be beneficial for obtaining early access to treatments that may not yet be approved.

The post Lung Cancer in the Black Community: An Expert’s Insight appeared first on Black Health Matters.

^{Head and neck cancers are more common in men than women, and in those over the age of 50.3, You are more likely to be impacted by head and neck cancers if you use tobacco or alcohol or if you have been diagnosed with oral human papillomavirus (HPV).3} In a recent study, Black patients with head and neck cancers had consistently worse outcomes than their white counterparts.⁴ Black patients are also less likely to receive adequate care for head and neck cancer.

Causes of Head and Neck Cancer

Many of the known causes of head and neck cancers are preventable. Awareness of these factors can help you make decisions that can lessen your risk of exposure. Principal risk factors for head and neck cancers include tobacco and alcohol use and exposure to the human papillomavirus (HPV).³

Other risk factors associated with SCC of the head and neck include:

• Exposure to harmful substances on the job, such as asbestos, dust, metals, and wood
• Ebstein-Barr virus infection
• Genetics
• Radiation treatments

Use of harmful substances

The use of any type of alcohol or tobacco is one of the two major risk factors. Inhaling tobacco smoke even if you are not smoking directly may also cause harm.³ The risk associated with developing these cancers is greater in those who use both alcohol and tobacco than it is in those who use one or the other.³

HPV infection

HPV is classified as a sexually transmitted infection (STI). Some types of HPV are associated with a risk of developing cancer. HPV infection is mostly associated with cancers of the tonsils or tongue.

How to Reduce Your Risk

Two main ways you can decrease your risk of developing SCC of the head and neck are by avoiding products that contain alcohol or tobacco and protecting yourself from HPV infection.^2,3

If you are a smoker, you can greatly decrease your risk if you quit smoking. You may think that quitting is easier said than done, but there are many resources available to help you. To further decrease your risk, you should stop using all tobacco products and avoid alcohol.⁵

HPV is the most common STI. The HPV vaccine can help protect you from HPV infections that have the potential to cause cancer. If you have not been vaccinated, speak with your healthcare provider to determine if the HPV vaccine is right for you. Because HPV is an STI, having protected sex and limiting your number of sexual partners can also help lower your risk of infection.^2,3

Symptoms of Head and Neck Cancer

Being able to recognize the signs and symptoms of head and neck cancer is an important part of raising awareness. The symptoms associated with head and neck cancer can be easily mistaken as symptoms of other conditions.^3,5

Symptoms include:

• White or red patches in the mouth, including the gums or tongue
• Pain in the neck or throat that does not go away
• A lump or hard area with or without pain
• Sore throat or pain when swallowing
• Chronic sinus infections
• Voice changes
• Nosebleeds

If you are experiencing signs and symptoms, discuss your concerns with your healthcare team, especially if you are at higher risk.

Help Raise Awareness

The Black community has historically been underrepresented in clinical trials across many areas of disease research. The harsh reality is that treatment and outcome disparities along racial divides exist among people with head and neck cancers.⁶ Minorities represent close to 40% of the United States population but only 11% of participants in clinical trials for FDA approved cancer drugs in 2020 were Black or Hispanic. Further research may help to understand exactly why. Still, in the meantime, it is important that we work to raise awareness of this lack of representation by increasing the participation of Black, Indigenous, and People of Color (BIPOC) in clinical research. Doing so will help ensure that future research and treatment advances incorporate study data from minority participants and apply to patients within these communities.

– – –

References:

1. Squamous Cell Skin Cancer
2. Penn Medicine. Squamous Cell Carcinoma of the Head and Neck
3. National Cancer Institute. Head and Neck Cancers
4. Liu, J. C., et al. “Racial survival disparities in head and neck cancer clinical trials.” Journal of the National Cancer Institute (2022): djac219-djac219.
5. American Society of Clinical Oncology. Head and Neck Cancer
6. Washington University School of Medicine in St. Louis. Gender and race interaction revealed in cancer survival disparities.

American Society of Clinical Oncology. Addressing the Barriers to Minority Participation in Cancer Clinical Trials

The post Squamous Cell Carcinoma of the Head and Neck: An Overview | Clinical Trials appeared first on Black Health Matters.

What Are Clinical Trials?

So clinical trials and research are just experiments, but again, designed in such a way that they help investigators and scientists learn more about diseases, medicines, and treatments. It’s conducted by doctors and other healthcare providers, including nurses and physician assistants; we’re looking at nurse practitioners and PhDs. You can see a lot of those different roles as investigators and researchers. What it means to be an investigator in research is that you are responsible for the research being conducted at your site. Now, you may be part of research where there are potentially a hundred sites across the globe, and you’re one site, but as an investigator, you are in charge of making sure that everything that happens in that research setting is ethical, that there is no harm done to the patient. And that, again, the conclusions that are pulled from that research are scientifically sound and statistically significant. So it’s a huge responsibility because it means a lot of protocol management, making sure your staff is trained, but again, making sure that we’re having authentic touch points with patients so that we can learn more about them and making sure they’re the right fit for the research that we’re conducting.

What kind of questions can clinical trials answer?

If I’m looking at it from a medication standpoint, it’s going to tell me if the medication is safe. Does it work for the health condition that we’re creating it for? How is it metabolized? And when we see metabolize, I know that sounds like a crazy big word, but think about how our body processes things. I can have a drug that’s metabolized by the liver, and then I can have one that’s metabolized elsewhere in the body. If I look at how it is eliminated, I need to know what type of pressure it puts on the kidneys. Maybe if I’m standing up this trial, I want someone with healthy kidneys, and maybe I’m looking at creatine clearance cut-off as part of my protocol and design of the study.

So all that’s important and all that is kind of what we learned in this research setting. And then two, if I’m standing up a drug, let’s say hypothetically for cholesterol, and I already know that there are other medications on the market that doctors are prescribing that clinicians are prescribing to their patients to treat cholesterol, I want to think about, okay, well where does my potential medication fit in this role of therapy? Am I saying that my medication may be better than what’s on the market? Or am I thinking, Hey, it may be for someone who has research and wants to learn more about the research and healthcare itself have a familial connection to cholesterol, a genetic component of cholesterol, and sound for us to make clinical decisions researcher wants to learn more about the condition?. So, these are all questions we seek to answer as we set up different clinical trials specific to medications.

How do we know clinical trials are safe?

We know that in our communities, our Black and Brown communities, research and healthcare itself have a complicated history. We know about Tuskegee; we know about Puerto Rican and birth control appeal trials where there was harm and grievances done to people within our community. But I’m happy to say that there are, again, those measures in place from a safety perspective that ensure we protect the rights of patients and participants in studies where we didn’t have that before. You have people like me who are members of the community that sit in these RD spaces where decisions are made so we can too circumvent and say, Hey, no, let’s make sure we do our due diligence as a sponsor of research since we don’t have any harm done to patients. So yeah, there’s been a shift from what we know to have occurred in the past because it really wasn’t that long ago. We’re really going to be honest about it. There have been some within our lifetime, some failures and research. But again, holistically, we’re doing better. There are more checks and balances. We have to report to an IRB review board that looks at our study procedures. So, there are more formal processes in place to protect patients’ rights.

Where would I start if I was interested in participating in a trial?

But for anyone interested in being part of research, the first step is to start with your doctor to see if that’s even a viable option. I will go through some of the stages of research because not all clinical research is meant to be an option of last resort. So often, I think there’s a misunderstanding that, hey, I’m dying of this disease, and there’s no medication to treat it.

So, all I have is clinical trials. In some spaces, that may be true, but in many spaces, when I look at the drugs that are being developed by scientists and by companies such as mine, I see that it’s very much so preventative medicine, precision medicine, where we’re going after certain biomarkers and certain genetic factors, and we’re coming up with therapies that are curative and preventative. So, it’s shifted how clinical trials are and why it’s important for us to be in these spaces.

The post Your Introduction to Clinical Trials (An Insider Breaks It Down ) appeared first on Black Health Matters.

CISCRP

Presented By:

Dr. Patrick O. Gee, Healthcare Consultant and Community activist

Sandy Powell, Community Engagement Research AdvocateHope Ventricelli,

Senior Manager, Community Events and Programs, CISCRP

Yejide Obisesan, Administrative Director at Georgetown-Howard Universities

Center for Clinical and Translational Science

Information empowers patients and researchers. Dr. Patrick O. Gee, Healthcare Consultant and Community activist; Sandy Powell, Community Engagement Research Advocate; Hope Ventricelli, Senior Manager, Community Events and Programs, CISCRP; and Yejide Obisesan, Administrative Director at Georgetown-Howard University, Center for Clinical and Translational Science, discussed this at the Black Health Matters Spring Summit.

Gee was motivated to participate in advocacy after being told why he was passed over for a clinical trial by a healthcare professional. Ventricelli inquired about his experiences.

“I was rejected from the study, and when I asked why she made this exact statement, he who owns the data owns the patient, and Patrick, you can’t be in the trial because we can’t get any money,” he told the audience. “That was very devastating to hear since that was the very first time that I was able or wanted to participate in a clinical trial.”

It was hurtful, but it added context to his clinical experience. “Your data is money. Medical companies make money off of your data because they will sell it to other researchers without your permission. Make sure when you sign the dotted line, you reread it, you take your time. If the trials team is trying to rush, you get up and walk away,” he advised. “You don’t want to end up being the next Henrietta Lacks or being a part of an egregious clinical trial.”

He has studied the details of trials to advocate for himself and suggests others do the same. “One of the things that people should know before they begin with a trial is to do research on the trial,” he said.

“One of the keys for me has been to ask questions, and that’s one of the things that I think we have been accustomed to someone spewing information at us, and we’ve been hesitant to ask those questions, and so on the front end, I’m asking questions.”

Obisesan reminded the audience that they are in control of their data. “You get to read that informed consent and go through it for as long as you want. And you can ask any questions if there’s a word that you don’t understand or if a timeline or something doesn’t make sense, you can ask any questions, and also you’re allowed to take that informed consent sheet with you,” she said.

Powell shared her own experience with rejection. “I have attempted to participate in three clinical trials. I have not been accepted as a result of the data that they were looking for,” she said. She uses her own clinical experience to advocate on both sides of the research spectrum. She could seek to improve patient-researcher relations with perspective.

“One of the things that I’ve had an opportunity to do through the patients’ program is to look at it on the back end through the lens of a researcher that’s looking to do it but also able to lend a voice on the other side of the fence as part of the community,” she said. “I’ve had an opportunity to sit in some of those panels to actually lend a voice to that.”

She described how she has been able to contribute by helping to facilitate helpful interactions that provide aid to potential participants before asking for their time and energy.

“We go into communities, and we’re not going looking for anything. We’re not asking for anything, but we’re going to see how we can be of assistance to the community, and some of the things that we’ve been able to do, as a result of that, through the program is provide transportation services for the community,” she said. Her teams have also provided food and other benefits “before we turn around and say, hey, we need you for some clinical information.”

Obisesan agreed that changing methods can change outcomes. “There can be, I’d say, a mild naivete and a lack of understanding in what it really means to approach a community and ask them to participate in research, especially communities that are underrepresented in research and they’re underrepresented for a lot of historical reasons,” she said.

“There can also be a paternalistic approach to coming to communities about education,” she added.

She recommends respecting “the knowledge and the history that community members have and approaching them like a partner with humility.”

Obisesan agreed that changing methods can change outcomes. “There can be, I’d say, a mild naivete and a lack of understanding in what it really means to approach a community and ask them to participate in research, especially communities that are underrepresented in research and they’re underrepresented for a lot of historical reasons,” she said.

“There can also be a paternalistic approach to coming to communities about education,” she added.

She recommends respecting “the knowledge and the history that community members have and approaching them like a partner with humility.”

“That makes a difference in communities coming in and saying, I do want to be involved,” she continued.

The post Taking Control of Our Health: Information That Empowers appeared first on Black Health Matters.

Presented By: Matthew L. Boyd, Pharm.D. Senior Oncology Medical Science Liaison

Johnson & Johnson Innovative Medicine

Matthew L. Boyd, Pharm.D., shared information on efforts to diversify clinical trials at the Black Health Matters Spring Summit. He spoke from personal experience. “I work with a lot of those community and academic institutions to bring our innovative trials to those institutions to support and take care of patients, hopefully,” he said.

He revealed that of the 24 out of 31 trials approved between 2015 and 2017, “less than five percent of them had Black or African-American enrollment.”

“So, think about that, all the cancers that we particularly treat from non-small cell, lung cancer to prostate cancer, to multiple myeloma, which disproportionately affects African Americans and Black patients, less than five percent of those,” he continued. “We cannot just be okay with that number being where it’s at.”

He acknowledged that the medical establishment has not always respected minority communities. This has led to significant mistrust among certain demographics.

“That leads to African Americans and minorities being less likely to go to their doctor,” he said. “There’s a lot of mistrust opportunities there.”

He described other hurdles to engaging diverse participants as well. “We also have some communication barriers. We know that many of our health systems are based in what can be described as almost redlined areas,” he continued.

Dr. Boyd explained the steps that need to be taken to engage those people. “You’ve got to travel there,” he said before pointing out other factors contributing to the staggering statistics. He emphasized the importance of “being able to talk to patients directly where they are in their neighborhoods and having opportunities to engage with patient populations and community leaders.”

Mistrust and redlining are not the only issues affecting diversity rates.

“There’s a lack of diversity within our healthcare institution as well,” he said. “So the position that you’re seeing, the nurse that’s going to be treating you, the phlebotomist that’s going to be drawing your blood, do they look like you?

Is that someone you can talk to, someone you can trust to tell you what’s currently happening?”

Misunderstandings about financial commitments can deter patient participation. They can avoid seeking care and information because they assume they will be charged.

“One of the things that sometimes people are not told or are not counseled on is that many of the clinical trials I work in are fully funded. Meaning you are going to get that medication for free. You don’t have to pay for it,” he said.

Assistance with enrollment allows potential participants to make an informed decision.

“You’re enrolled in it. We’re collecting data on it. But you get that treatment for free.

One of the things that we’re also doing is ensuring that those items are passed down on to patients so that you’re informed that you’re getting that treatment for free so that people can talk you through enrollment,” he said.

The Research Includes Me initiative has a website that clearly defines the parts of a clinical trial.

Dr. Boyd and his colleagues consider “the convenience factor” as well, knowing that practical concerns can prevent a patient from seeking care. “It’s very hard for a mom or dad who has just received this particular diagnosis to say, I’m going to be enrolled in this clinical trial, and I’m going to go take all these labs, and I’m going to go and deal with the parking situation,” he said.

“The logistical burden that patients have to go through. That’s been a big factor that’s led to enrolled patients, who then decide I will no longer be enrolled because there are too many appointments.”

The next phase in intentional inclusion in clinical research is building partnerships with institutions prepared to serve different types of people. Providing them with the proper resources to extend their offerings is imperative.

“It means going to different institutions, helping them build out the infrastructure to actually be able to do research at that particular institution, providing grant funding to hire and train people,” he said. Learn more about Research Includes Me here.

The post Diversity and Inclusion in Clinical Trials appeared first on Black Health Matters.

What is breast cancer recurrence?

Breast cancer recurrence occurs when the cancer returns after it was previously treated or undetected. There are 3 main types of breast cancer recurrence. Local recurrence occurs when the cancer comes back in the same breast. Regional recurrence occurs when the cancer comes back in the lymph nodes near the breast. Distant recurrence occurs when the cancer comes back somewhere else in your body. Of all the breast cancer subtypes, female patients with HR+/HER2- breast cancer experience the highest 5-year survival rates at 94.8%. Additional research is needed to fully understand the risk of recurrence in patients with HR+/HER2- breast cancer.

If you have been treated for breast cancer, the thought of cancer recurring can be stressful. Early detection and intervention may improve outcomes in patients who experience recurrence. It is important to maintain routine follow up visits as recommended by your healthcare provider to closely monitor.

Risk of Recurrence in Black Women

Minority women with HR+/HER2- breast cancer, including women of Black, Hispanic, and American Indian descent, experience significantly increased risks of breast cancer recurrence when compared to white women. While HR+/HER2- breast cancer has a more favorable prognosis than other types of breast cancer, it represents the greatest disparities in survival. Other risk factors that have been found to contribute to the risk of recurrence include larger sized tumors and involvement of lymph nodes.

If you or a loved one have early-stage ER+/HER2- breast cancer and have had surgery to treat it, you may be eligible for a clinical trial. Click here to learn more about an ongoing breast cancer clinical trial, determine if you are eligible, and do your part to increase diversity in clinical trials and advance estrogen receptor positive (ER+) and human epidermal receptor 2 negative (HER2-) breast cancer research.

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References

• The Breast. Risk of recurrence among patients with HR-positive, HER2-negative, early breast cancer receiving adjuvant endocrine therapy: A systematic review and meta-analysis
• New England Journal of Medicine. 20-Year Risks of Breast-Cancer Recurrence after Stopping Endocrine Therapy at 5 Years
• American Cancer Society: Understanding Recurrence
• National Cancer Institute. Cancer Stat Facts: Female Breast Cancer Subtypes
• The Breast. Population-based recurrence rates among older women with HR-positive, HER2-negative early breast cancer: Clinical risk factors, frailty status, and differences by race

This article is sponsored by Lilly.

The post Risk of Breast Cancer Recurrence in Black Women appeared first on Black Health Matters.

While lupus can affect individuals of all ages and ethnic backgrounds, minority groups including Blacks are impacted the most, and women are affected more than men.² Black women are most impacted by this condition.³ Up to 60% of lupus patients will develop lupus nephritis.^1,5

What is Lupus Nephritis?

Definition

Lupus nephritis is a type of kidney disease caused by lupus. It is a common but serious lupus-related health complication, meaning only patients with lupus can develop lupus nephritis. It is caused by the body mistakenly attacking the kidneys, leading to swelling and scarring of the blood vessels that are responsible for filtering kidney waste.⁴ Men are more likely to develop lupus nephritis than women. Blacks, much like Asian Americans, Pacific Islanders, and Hispanics, remain at high risk for developing lupus nephritis.⁶

Lupus nephritis, if left untreated, may result in impaired kidney function or kidney failure requiring dialysis or a kidney transplant. It is also a risk factor for developing end stage renal disease. Severe forms of lupus nephritis may cause permanent kidney scarring. Patients with lupus nephritis are at a higher risk of developing certain types of cancer and heart problems.¹ There is no cure for this disease, but treatment can help manage symptoms and prevent disease progression.

Signs and Symptoms of Lupus Nephritis

Signs and symptoms of lupus nephritis may vary. Symptoms may not be noticeable at onset of the disease, and it may take up to 5 years after lupus symptoms appear to recognize symptoms of lupus nephritis.⁵ Potential symptoms should always be evaluated by a healthcare professional to confirm or rule out a diagnosis of lupus nephritis. The most common symptoms include^1,4-6:

• Weight gain
• Swelling (usually in the legs, feet, or ankles)
• Urine changes
  • Frequent urination
  • Blood or protein in urine (may only be visible under a microscope)
• High levels of waste (creatinine) in your blood
• High blood pressure

Lupus Nephritis in Blacks

Why are lupus and lupus nephritis more common in Blacks? We don’t know. Some experts believe it may be related to genetics, however there may also be hormonal and environmental causes.^3,6 Additional research is needed to help better understand and evaluate this condition.

Importance of Clinical Trial Participation

A surprising 63% of Americans surveyed had limited knowledge of lupus and its symptoms or had never heard of the condition. This proves there is still much work to be done in raising awareness and knowledge surrounding lupus and its complications.²

Clinical trials allow researchers to contribute to improving quality of care and identifying and exploring better treatment options. Clinical trials for lupus have not had much success recruiting minority patients to participate. Unfortunately, Black patients are underrepresented in clinical trials due to a number of barriers such as limited knowledge of clinical trials and when they occur, feelings of anxiety and lack of trust surrounding clinical trial participation, and limited education about the disease.⁷

Blacks make up around 12% of the United States population but are only represented in clinical trials at a low rate of 5%.⁷ In order to gain more insight and reduce health disparities, it is important to increase participation of Black patients in lupus-related clinical trials. If you have been diagnosed with lupus nephritis (LN), you may be able to participate in an important new study and potentially avoid further damage to your kidneys. Learn more here.

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References:

1. NIH – Lupus and Kidney Disease (Lupus Nephritis)
2. Lupus Foundation of America – Lupus Facts and Statistics
3. CDC – Systemic Lupus Erythematosus (SLE)
4. National Kidney Foundation – Lupus and Kidney Disease (Lupus Nephritis)
5. Lupus Foundation of America – What is Lupus Nephritis?
6. American Kidney Fund – Lupus Nephritis: Symptoms, treatment, and complications
7. NIH – The State of Lupus Clinical Trials: Minority Participation Needed
8. National Kidney Foundation – Are Clinical Trials Safe?

The post What is Lupus Nephritis and Why Is It More Common in Blacks? appeared first on Black Health Matters.

Check out these recruiting trials: Funded by Bristol Myers Squibb.

The post Adrienne Nicole Talks Lupus Advocacy & Clinical Trials appeared first on Black Health Matters.

According to the Alzheimer’s Association, as many as 5.8 million Americans are living with Alzheimer’s disease, and Blacks are about twice as likely as non-Hispanic Whites to develop AD and other forms of dementia Among Black Americans ages 70 and older, 21.3% are living with AD. Blacks are also carrying a disproportionate burden of the overall national cost for AD, which is mainly from caregiving costs, as well as loss of income and productivity, according to Stephanie Monroe, director of the African American Network Against Alzheimer’s. “Alzheimer’s is costing Blacks generations and generations of income and wealth that’s been built since the Civil Rights era,” Monroe told Caregiver Crossing, a podcast focused on caregiving.

Researchers are still examining why Blacks are impacted disproportionately by AD. Studies show that it’s a combination of socioeconomic disparities, higher rates of chronic diseases such as diabetes and heart disease, and genetics. Lack of participation in trials is another contributing factor. Last year, the National Institute on Aging, part of the U.S. National Institutes of Health, launched an online tool, OutreachPro, to help researchers and clinicians increase awareness and participation in clinical trials in Alzheimer’s disease and other dementias, especially among traditionally underrepresented communities. The tool, launched at the 2021 Alzheimer’s Association International Conference in Denver, allows researchers, clinicians, and trial administrators to create and customize outreach materials such as websites, handouts, videos, and social media posts with an emphasis on reaching traditionally underrepresented communities. “Outreach Pro was designed to provide well-tested and culturally appropriate outreach materials that resonate with diverse populations and encourage them to participate in clinical trials,” said Dr. Holly Massett, Ph.D., Senior Advisor on Clinical Research and Engagement at NIA, who oversees the implementation of the national strategy.

Researchers have begun to focus on having diverse participant populations in clinical trials. In the AHEAD Study, extensive efforts have been made to include underrepresented populations.

The study is designed to evaluate a potential treatment to slow the earliest brain changes and help prevent symptoms associated with Alzheimer’s disease. It’s the first  AD research study to recruit people as young as 55 years old who are at risk of developing symptoms of the disease as they get older.

In order to qualify for the study, potential participants are adults ages 55-80 who have not been diagnosed with Alzheimer’s disease or another dementia. The treatment is experimental and participation is approximately 4 years with a variety of options available to accommodate participants’ busy schedules. Most study sites provide reimbursement for travel and a stipend for attending study visits.  Those interested in participating in the AHEAD study can apply here.

The post The Need for More Black Representation in Alzheimer’s Clinical Trials 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.

But misperceptions about that underrepresentation persist. A recent summit hosted by Black Health Matters sought to debunk the myths the medical community has used to explain the lack of Black participation in clinical research, with the goal of turning the tide.

“We’re looking to get Black people more involved in clinical research, because without it, we won’t know if these medicines are effective for people like you,” Denise Bronner, Ph.D. Janssen Diversity’s director of equity and inclusion in clinical trials, told the audience.

First, a key statistic: While around 14% of Americans are Black, they account for less than 5% of trial participants. This is a major concern because there are several diseases that have a specific impact on Black populations.

Lupus, for example, disproportionately affects Black women, and its progression can vastly differ when compared to White women. That is why diverse representation in clinical trials is essential as it helps to identify treatments that work as well as the differences in disease progression across all demographics.

Dr. Bronner, along with Melanie Igwe, co-founder and chief operating officer of digital health platform ViuHealth, debunked three myths that are likely impacting the participation rates of Blacks in clinical trials as part of their call to action:

Myth #1: Black participants simply do not exist. The medical research community—trials sponsors and biotech companies who create the medicines—often say prospective Black participants do not exist. And while that is used as a justification for low participation, that simply is not true, said the panelists.

Dr. Bronner stated that intentional outreach is necessary, not only through education and raising awareness in Black communities, but also by building an enduring alliance with the people in those communities. “Because on several occasions, companies will come into communities to set up shop, get what they need in terms of patients and data then leave. And we cannot continue to let that happen,” she said.

She pointed to ViuHealth’s efforts to diversify research and make clinical data more representative. ViuHealth not only consolidates patient medical records, they also help them identify trials that are available in their area. Thus far they have ~40,000 patients in their ViuHealth database and 30% are Black (~12,000), a number that continues to grow month to month!

Myth #2: Blacks are not interested in clinical trials. It is true that Black people have a historical distrust of clinical research as a result of the Tuskegee study and other medical atrocities. But clinicians and sponsors need to make an effort to go into Black communities to gain trust, address concerns, and change the narrative about medical research, the panelists said.

“It is wholly incumbent for us to reimagine the way that we are looking at care and look at it in a more collaborative capacity,” said Igwe. “Because once you’re able to do that and once you’re building these inroads, you understand some of the myths you believe are lacking in any kind of reality.”

Igwe said of the patients ViuHealth has recruited to date, 45% have been diverse, and of that 45%, 50% of them are Black. She attributed those numbers to the explanatory information about clinical trials that is featured on the platform as well as ViuHealth’s effort to match participants with a “study buddy” for support throughout the lifecycle of the trials.

Myth #3: Patients are most likely to drop out of clinical trials. Dr. Bronner noted a common physician belief that because their Black patients often stop taking their prescribed medications, they would similarly drop out of clinical trials.

She highlighted that medical professionals fail to acknowledge how medicines are impacting the patient’s quality of life or whether insurance coverage has become an issue for the patient. As a result, they are falsely assuming Black patients will not remain in clinicals trials. In these instances, “physicians are the barrier,” said Dr. Bronner.

Igwe added that health literacy is important, that patients need to be empowered with information to have impactful conversations with their physicians. ViuHeath makes sure it provides patient-facing materials to help spark conversations between individuals and their physicians about their care. Additionally having a study buddy to guide the patient through their trial journey provides the reassurance that patients seek.

Because of that investment, Viuhealth’s patient retention is high—greater than 60% of patients are remain in a study they were eligible for. “If people feel supported…people will know you have their best interest at heart, and as a result, really demonstrate the behavior you’re trying to show to them that is good for their health.”

The post 3 Myths That Are Keeping Black People Out of Clinical Trials appeared first on Black Health Matters.

Clinical trials are health-related research studies that study and evaluate the safety and efficacy of investigational medicines, vaccines, and medical devices on humans.

Before a new medicine, vaccine, or medical device can be approved for public use, it must be researched through a series of phases in a clinical trial to evaluate whether a new medicine or vaccine is safe and effective for use by the general public.

Unfortunately, many clinical trials continue to lack the representation needed to reflect real-world populations. Diverse representation matters. A participant’s race, ethnicity, sex, and other health factors play a critical role in the development process of treatment options for public use.

To learn more about the clinical trial process, visit: www.researchincludesme.com

The Role of Diversity in Research Studies

When it comes to studying the safety and efficacy of investigational medicines; there is no one size fits all approach. The same medication can and may have different effects on participants with varying biological differences. Without diverse representation , researchers may not have the data to determine if and how differing backgrounds may respond to new and investigational drugs, medicines, vaccines, and recommended dosages.

For this reason, diversity in clinical trials is imperative for researchers to understand how certain health conditions affect different populations and to help ensure the safety and effectiveness of investigational treatment options for consumers of diverse backgrounds.

Minorities are Reluctant to Participate in Clinical Trials

Diversity in clinical trial participants is crucial to improving public health outcomes. However, for many minorities, distrust in the healthcare system is the main barrier in their willingness to participate in clinical trials.

This skepticism isn’t without cause. Historically, minorities have been the subjects of unethical practices in past clinical research studies. Such studies include: the Tuskegee Syphilis Experiment, the Puerto Rico Pill Trials, the case of Henrietta Lacks and many others.

Although new regulations and human rights protections have been implemented to prevent the reoccurrence of past wrongdoings and to help ensure the safety of clinical trial participants – the stigma of clinical trials for many minorities still lingers.

Improving Diversity in Clinical Trials

Patient and healthcare provider relationships

Doctors and healthcare providers are in a position to make the most impact when it comes to improving diversity outcomes in clinical trials. Physicians can help drive diversity outcomes by simply talking to their patients about clinical trials and getting to know them more. By developing meaningful relationships with their patients, doctors are able to establish trust and are in a better position to inform and support their patients with their decisions to participate in clinical trials.

Transparency

Minorities need transparency from researchers and healthcare providers in order to feel comfortable and safe enough to participate in clinical trials. From recruitment to onboarding and throughout the clinical trials process, participants need and should feel like they are a part of the process and be should be informed every step of the way.

Patient/Care advocates

Patient advocates are able to help support patients to make the best decisions for themselves. Enlisting patient advocates can help potential participants feel more at ease and less alone with the clinical trials process. They’re able to use plain language to help participants understand the clinical trial process, their rights, financial information, and better communicate any questions or concerns they may have. Connecting participants with care advocates can help give them the support they may need to enlist in a clinical trial – especially if the care advocate is of the same racial, ethnic, and/or language and cultural background as they are.

Outreach

Making an effort to reach out to diverse groups is always a step in the right direction. Outreach groups and agencies such as the CDC’S Office of Minority Health & Health Equity (OMHHE) are able to reach out and connect with diverse communities. In doing so, outreach agencies are in a unique position to be able to provide useful resources and educational content to stakeholders to garner advocates, new participants, and help erase clinical trial stigmas.

The Next Steps: Participating in a Clinical Trial

To participate in a clinical trial, talk to your physician or healthcare provider and let them know that you’re interested in learning more about clinical trials. They may already have a trial in mind that you might be a good fit for. You can also visit: ClinicalTrials.gov . This website is maintained by the government and lists active trials for many different diseases and illness.

The post Representation Matters: The Importance of Diversity and Inclusion in Clinical Trials appeared first on Black Health Matters.

While certain aspects of health are advancing, some people continue to be left behind, and this disparity is especially apparent in the clinical trials process. Pharmacogenetic research has uncovered significant differences among different groups in the metabolism, effectiveness, and side-effect profiles of many clinically important drugs. Yet, clinical trials for these therapies don’t always represent the demographics of the people who will use them.

Since 2019, the Janssen Pharmaceutical Companies of Johnson & Johnson have been working to change these dynamics, and to ensure our clinical research efforts across our organization mirror the populations that will benefit from our medicines. Our vision is a world where clinical trials are representative of the patient populations we serve, and we know that this vision can be achieved with transparency, commitment, and accountability.

Investing in reaching and recruiting underrepresented participants will only advance progress in medicine by ensuring the relevance of clinical trials to the real world. By developing and adopting inclusive clinical trial design, execution and analysis across all our therapeutic areas, we aim to ensure data and insights from underserved and underrepresented populations inform the development of safe and effective therapies and treatments.

Our Approach to Promoting Diversity, Equity and Inclusion in Clinical Trials
We are scaling our approach to deliver impact across Janssen’s entire portfolio to advance health equity, close gaps in care, and create a better future for our patients. To achieve this vision, we have created a formula for success:

In 2021, we will continue to:

• Educate investigators and increase diversity of trial personnel
  We are increasing the focus on the importance of diversity, equity and inclusion within our clinical trials with our external partners and study sites, and working together to develop the strategies and resources needed to execute. This includes equipping healthcare personnel with educational resources and preparing them for conversations about the importance of diversity and inclusion in clinical trials. Identifying and engaging study sites with personnel who reflect underrepresented populations is also crucial.
• Remove logistical barriers
  Meeting people quite literally where they are is critical to driving clinical trial participation of underrepresented populations. We can help to mitigate challenges—such as travel and time off work—by expanding the network of sites and investigators we work with to include those serving underrepresented communities, and when needed, contributing our expertise and resources to support their growth, so more people have local access.
• Establish trust through community partnerships
  Understandably, many Black and Brown communities struggle to trust clinical research due to past incidents, such as the Tuskegee Syphilis Study, and current systemic inequities in healthcare. Engaging with trusted community figures and institutions—churches, civic groups, professional associations, and non-profit organizations—to increase transparency and disseminate accurate information about today’s clinical trial process—and protections in place for participants—is pivotal in earning trust.

Johnson & Johnson’s ongoing collaboration with the National Black Nurses Association is a key example of two organizations combining our resources and reach to achieve our shared goal of ensuring access to the highest quality of healthcare for persons of color. Since 2016, Johnson & Johnson has worked with NBNA on a variety of initiatives, including COVID-19 vaccine education, scholarships for nursing students, and nurse resiliency training and recognition efforts. We are proud of our continued work together and look forward to expanding our collaboration to include pursuing equity in clinical research.

Learn More: Research Includes Me
We encourage you to learn more about the clinical trial process, and the importance of ensuring that all people are represented. Janssen’s Research Includes Me program was created to raise awareness about clinical trials and encourage people from all communities to participate. More information can be found on ResearchIncludesMe.com.

This article is brought to you by Janssen.

The post Collaborating with Trusted Community Leaders to Build Diversity, Equity and Inclusion in Clinical Research appeared first on Black Health Matters.

Ruby Barker further explained, “been really unwell for a really long time. And I just want to be honest with everybody: I have been struggling.” She will be discharged soon and reported that she did receive a diagnosis, which she will share later.

“I’m gonna get discharged soon and hopefully get to continue with my life. I’m gonna take a little bit of a break [for] myself,” she continued, encouraging others to do the same.

“Take a break, stop being so hard on yourself,” she advised. “[P]eople used to always tell me not to be so hard on myself…What does that really mean, to stop being hard on yourself? To love yourself?” she added, “We really need to change the dialogue…and think about our linguistics when we’re talking about mental health.”

Her disillusionment led her to neglect her mental health while becoming “rage-filled, frustrated [and] angry.” She could not cope with “all this intergenerational trauma bundled up inside.”

“I was carrying the weight of the world on my back,” she explained.

Ruby Barker explained she’s “relinquishing myself and forgiving myself and drawing a line in the sand. I can’t carry on the way that I’ve been carrying on. I need to change. So, that’s what I’m trying to do,” she added.

The actress thanked her community of friends, mentors, and Australian musician Sexton. She goes on to thank Netflix and Shonda Rhimes “for giving me an opportunity; for saving me.” Lastly, Barker urges her followers to seek help and support if and when they need it. She advocated for broader mental health awareness for all. “I want to survive, and I will survive, and I’m going to. And so are you,” she said. “That’s the beauty of it: so are you. If you’re with me, you’re in good hands.”

Ruby Barker was discharged from the hospital on Monday.

The post ‘Bridgerton’ Star Ruby Barker Hospitalized for Mental Health appeared first on Black Health Matters.

But we also have a lot of answers when it comes to reducing your cancer risk. We know definitively that smoking causes a host of cancers. Ditto for smokeless tobacco and environmental hazards like asbestos.

This week we got more news, although it may not seem all that new since a lot of it is advice you’ve heard dozens of times from your doctor—and your mom: Eat less and move more. Finish your vegetables. You’ve had enough alcohol, young lady.

It’s sage advice now borne out by a panel of scientists from the World Cancer Research Fund/American Institute for Cancer Research, an internationally recognized group that includes Anne McTiernan, M.D., a longtime Fred Hutchinson Cancer Research Center epidemiologist who studies the connection between lifestyle and cancer.

So this time you may want to listen, especially if cancer of the large intestine, i.e., the colon, or its lower counterpart, the rectum, is a concern. These cancers, often lumped together under the term colorectal, are the third most common cancers worldwide and the fourth most common cancer killer. Colorectal cancers kill 700,000 people a year globally and here in the U.S., colorectal cancer rates—and deaths from those cancers—are rising in adults under 50.

“It’s very concerning and needs to be studied,” said Dr. McTiernan of the disturbing trend. “Risk factors like obesity and lack of physical activity have caused an increase in diabetes in younger people. Maybe it’s similar in colorectal cancer.”

In their report, Dr. McTiernan and her colleagues didn’t address this bump in colorectal cancer rates but they did provide a clear a picture of how the foods we eat and the behaviors we indulge in can either increase or decrease our risk. The team analyzed nearly 100 large cohort studies from around the world involving more than 29 million adults—including nearly 250,000 folks who eventually developed colorectal cancer. Some of those people got cancer as a result of an inherited genetic mutation (think Lynch syndrome); others got it due to disease, like Crohn’s.

But many more developed colorectal cancer because of acquired genetic mutations. It’s these mutations, some of which are brought on by lifestyle choices, that we can actually do something about.

“The findings … are robust and clear,” said lead author Edward L. Giovannucci, professor of nutrition and epidemiology at the Harvard T.H. Chan School of Public Health. “Diet and lifestyle have a major role in colorectal cancer.”

Interested in the major role you and your diet can play in fending off colorectal (and maybe even other cancers)? We went through the report with Dr. McTiernan, who’s written a memoir about her own tumultuous relationship with food, and highlighted five cancer-busting behaviors you can start working on today (check out the full report for additional tips).

1. Move your body. People who are physically active have a lower risk of colon cancer than those who are not. It doesn’t matter if you move furniture for a living; walk to work and back each day; or hike, bike, swing dance or work out at a gym—it’s all good. Physical activity helps you cut your risk for colon cancer by as much as 20 percent (the numbers weren’t as significant for rectal cancer).

What difference does exercise make? Obesity is a risk factor for many diseases, including cancer. Exercise helps you lose weight, which in turn reduces insulin resistance and inflammation, both of which are linked to the development of tumors in the colon. Exercise may help also specifically cut the risk for colon cancer by stimulating digestion and reducing what’s known as “colon transit time.” And that’s a good thing.

Dr. McTiernan said the U.S. Surgeon General’s recommendation of 30 minutes of moderate-intensity activity five days a week is a good starting point. “But you’ll get more benefit if you do an hour a day,” she said. “You don’t have to run an hour a day. Just fold activity into the day wherever you can: take the stairs instead of elevators; go for a walk at lunch; do walking meetings with colleagues at work.”

2. Gobble those grains. People who eat whole grains every day have a lower risk of colorectal cancer than people who don’t. In fact, eating about three servings of whole grains (90 grams) per day reduces your risk of colorectal cancer by 17 percent, according to the report. And the more whole grains you eat, the more you cut your risk.

Why? Whole grains contain dietary fiber, which reduces colorectal cancer risk in a number of ways, including, yes, reducing colon “transit time.” They also contain a slew of nutrients and compounds with anti-carcinogenic properties, many of which are found in the bran and germ of the grain, i.e., the part that’s processed out.

Oatmeal, popcorn, corn, wild rice, buckwheat and quinoa are all whole grains. Ditto for barley, bulgur, kasha, millet, sorghum and farro. Want some easy swaps to get started? Go with brown rice instead of white and use whole wheat flour instead of refined white flour. And read those labels!

“Look for whole grains as the first ingredient on a package,” Dr. McTiernan said. “In general, real food that you make yourself is better than buying everything processed. But that doesn’t mean everybody has to make their own bread.”

3. Back away from the bacon (and other red/processed meat). Yes, we know. You love bacon. But it doesn’t love you back. In fact, the report found “consistent evidence” that for every 50 grams of processed, preserved or cured meat eaten per day—that’s about two slices of bacon, by the way—you’re bumping up your risk for colorectal cancer by 16 percent.

Eating red meat—i.e., beef, pork, lamb and goat—also ups your risk, particularly if you eat more than 500 grams in a week (that’s just over a pound). Why? Part of the issue is the chemicals that are created when you cook meat at high temperatures. Another part is that red meats contain high levels of “heme iron” (the type of iron found in blood and muscle), which promotes the growth of cancerous tumors.

Dr. McTiernan acknowledged science doesn’t have all the answers when it comes to figuring out the mechanisms that directly link colorectal cancer with red and processed meat. But “very high heat seems to release carcinogens,” she said. “It’s better to have a diet of more plants and lower fats and meats. And really limit your intake of highly processed meat, most of which are made of red meat.”

4. Load up on plants (and fiber). Many of us have been raised to think every meal should consist of a slab of meat, some kind of bread or starch and maybe a veggie. But Dr. McTiernan advised we move away from these Mad Men-style meals of steak, baked potato and miniscule salad and, instead, cancer-proof our plates.

“Meat should take up less than one-quarter of the plate,” she said. “Vegetables should be half the plate and then some kind of whole grain on the other one quarter.” Plants, not meat, should dominate our meals, said Dr. McTiernan. This serves us in a few different ways. If we eat mainly vegetables, we’re taking in fewer calories so we’re better able to control our weight. And plants—and their dietary fiber—fend off cancer by providing us with a slew of anti-cancer agents, by reducing intestinal transit time and by increasing fecal bulk.

Non-starchy vegetables are the best sources of fiber (think broccoli, Brussels sprouts, lettuce, cabbage and artichokes). Peas, lentils, beans and nuts also pack quite the fiber punch as do fruits like berries, apples and pears, especially if you eat the skin. Fruits are also a rich source of vitamin C, another nutrient that may protect against developing colorectal cancer.

“Overall, a lot of fiber is helpful,” Dr. McTiernan said. “We don’t know if it’s because it gets the food out of the body faster or if it’s something about the fiber itself—maybe it helps with absorption of vitamins. It’s just better to have a diet of more plants. You don’t have to be a vegetarian; just have an overall pattern of plant-based meals.”

5. Limit your booze. Yes, we love a glass of wine after a long day. But when it comes to alcohol and cancer, less is definitely more. The new research points to a number of probable associations involving everything from toxic metabolites to oxidative stress to cellular penetration of carcinogens. But after sifting and sorting hundreds of studies, the bottom line is as clear as a shot of potato vodka: Consumption of alcohol is a “convincing cause” of colorectal cancer, especially if you drink more than 30 grams—or two drinks—a day.

Dr. McTiernan, who recently co-authored a paper on alcohol’s impact on breast cancer risk (yes, it’s a problem there, too), was sympathetic but straightforward about this finding.
“Really limit your use of alcohol,” she said.

From Fred Hutch News

The post 5 Ways to Reduce Your Risk of Colorectal Cancer appeared first on Black Health Matters.

Factors such as gender, race, ethnicity, age, or lifestyle can cause disease to affect people in different ways. These factors may also play a role in determining if a medicine is safe and effective for use in different groups. For this reason, a diverse group of people should be represented in clinical research to help evaluate if investigational medications are safe and effective for the people that they are intended to help.

However, many clinical trials today are made up of as much as 80% White participants, and do not include enough people of different genders, ages, races, and ethnicities. Black people and other people of color are often not represented. We know that medical care must be tailored to all who need it, or people will be left behind, and creating more inclusive clinical trials is a critical first step.

To help address this need, in partnership with the Janssen Pharmaceutical Companies of Johnson & Johnson, Black Health Matters recently held the “Together We Can: Increasing Diversity in Clinical Trials” event, the first in a series of community conversations with Janssen around the importance of representation in research . The series is one of the latest activations in Janssen’s Research Includes Me campaign, spearheaded by the Janssen Diversity, Equity and Inclusion in Clinical Trials (DEICT) team.

Leading the conversation was Janssen DEICT’s Ramona Burress, Associate Director, Diversity & Inclusion in Clinical Trials. She was joined by a panel of subject matter experts, including: Jaszianne Tolbert, MD, Janssen’s Senior Director, Oncology Clinical Development; Gina Lamar Evans, MPH, Founder and CEO of NEFUSE Case Management and Training Services; and Nabilah Talib, M.Ed., Director of Education & Training at YWCA Metropolitan Chicago.

The live session sought to provide—and spark—dialogue at the community level to show why increased diversity in clinical trials is so vital. The group’s discussion addressed such questions as:

• Why is clinical research important?
• In what way can we use our voice to overcome the real, valid concerns people have about research and past mistreatment of clinical trial participants?
• How can we be an advocate for clinical research with our families, friends and loved ones?  

The participants reinforced the importance behind open and honest conversations like these as a first step in improving health equity for underserved communities. That is why Janssen DEICT is steadfastly working to better acknowledge, recognize and address the challenges preventing clinical trial participation for these populations around the world, who face a variety of barriers that impact clinical trial enrollment—such as fear and mistrust, lack of awareness and logistical challenges.

To do that, Janssen DEICT has established several practices for engagement, including:

• Working with organizations at the community level to educate people on the clinical trial process and build trust in research.
• Providing educational materials to underrepresented communities, including the Research Includes Me campaign and website, that are customized to address their specific needs and help them make an informed decision about their participation.
• Identifying opportunities to reduce barriers to participation that communities may be facing and implementing tactics to overcome them and make clinical trial participation easier.

Janssen is working to shape the future of clinical trials by ensuring trials are more diverse, inclusive, and equitable, including for those in historically marginalized communities. This can only be achieved with transparency, commitment, and accountability. Watch the following video and visit www.researchincludesme.com to learn more about the clinical trials process and what you can do to help contribute to increased representation and medical breakthroughs for ALL.

This article is brought to you by Janssen.

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• Triple negative breast cancer means that when the tumor is tested it comes back negative for the following receptors: estrogen, progesterone, and the HER-2/neu positive/negative gene. If you are diagnosed with breast cancer, make sure you know the results of your receptor test.

• These cancers grow faster than other breast cancers and can spread to other organs in the body such as the liver, lungs and the brain. Most women diagnosed with this form of cancer are diagnosed at an advanced stage of the disease.

• Triple negative breast cancer reoccurs more frequently than other forms of breast cancer. And when it comes back, it comes back with a vengeance and responds less to treatment.

• But not all is lost. People can survive this disease with access to quality health care. Make sure you work with your doctor to find the right treatment at the right time that will work for you.

For more information tune in to Immunomedics’ FB Live Stream from ASCO on June 2, 2018 at 4:00pm cst. Facebook.com/TNBCFoundation

Edith Peterson Mitchell, MD, FACP, FCPP, is Board Certified in Internal Medicine and Medical Oncology and is Clinical Professor, Department of Medicine and Medical Oncology at Sidney Kimmel Medical College at Thomas Jefferson University and Associate Director for Diversity Programs and Director of the Center to Eliminate Cancer Disparities for the Sidney Kimmel Cancer Center at Thomas Jefferson University.

The post A Conversation with Dr. Edith Mitchell: Four Things to Know About Triple Negative Breast Cancer appeared first on Black Health Matters.

Lupus can be a debilitating disease. With lupus, the body’s immune system mistakenly attacks healthy tissues and organs. These attacks produce symptoms such as inflammation in the body, rash, hair loss, skin discoloration, swelling, and pain.

Based on the Centers for Disease Control (CDC) data, the Lupus Foundation estimates that there are nearly 16,000 new cases of lupus per year¹. Anyone can develop lupus. However, women between the ages of 15-44 make up 90% of lupus cases¹.

African American women and women of color are the most likely to be diagnosed with some form of lupus¹. For African American women, lupus is more common and starts developing at a younger age². In addition, African American women are more likely to face premature death as a result of lupus complications. Researchers believe that genes, heredity, hormones and environmental factors contribute to the likelihood of an individual developing lupus ¹.

Because African American women are the most likely to be negatively impacted by lupus, more African American women should consider participating in clinical trials. Clinical trials are research studies that involve studying an investigational drug or therapy and ensuring that it is safe and effective for the general public to use.

Although the data shows that African American women are diagnosed with lupus and experience premature death more than other racial groups¹, it doesn’t explain why. More African American women need to be encouraged to participate in clinical trials in order for researchers and healthcare professionals to understand why African American women are more likely to develop lupus, and can then provide better care options for the future.

In a patient interview with the Lupus Foundation, lupus survivor and African American clinical trial participant Wendy Rodgers states, “…when we participate in a clinical trial, we empower ourselves.”

If you have been diagnosed with lupus, you might want to consider participating in a clinical trial.

You’ll also have access to a team of healthcare professionals to get your health-related questions answered. In addition, you will play an important role in the health of yourself and others who are living with lupus.

Without the inclusion of more African American women volunteer participants in clinical trials, what scientists understand about lupus and how it affects African American women is limited. In order for researchers to develop lupus medications that are safe and effective for African Americans, their participation is needed in clinical trials.

Clinical trials also help advance medical knowledge and are necessary for scientists to develop and test new treatment options and investigations drugs for the safety and efficacy of all involved.

When scientists are testing for efficacy and safety in an investigational medication, genetic risk factors matter. Genetic risk factors include an individual’s age, sex, race or ethnicity, and family history¹. This means that race and other genetic factors may influence how a medication works³ in a person’s body and what side effects they may have.

Because African American women experience lupus the most, their presence is necessary in clinical trials to ensure that investigational drugs are safe and effective for them to use.

Clinical trials are completely voluntary. If you or a loved one have been diagnosed with lupus, visit BMSStudyConnect to find out if you’re eligible for a clinical trial.

References:

1 https://www.lupus.org/resources/lupus-facts-and-statistics. Accessed May 7,2021.

2 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4198147/. Accessed May 7, 2021.

3 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2594139/. Accessed May 7, 2021.

The post African American Women and Lupus: The Most Diagnosed and More Likely to Die Prematurely appeared first on Black Health Matters.

“You hear the word cancer and . . .your mind goes . . . to [the] next level,” Al reflects as he recalls the moment his urologist Dr. Vincent Laudone of Memorial Sloan Kettering Cancer Center gave him the news. “I wanted to go public with this because [1 in 7]* men are going to be diagnosed with prostate cancer in their lifetime . . . [and] for African American men . . . it’s more deadly.”

For Black men, the reality of a prostate cancer diagnosis is far greater than their White counterparts and twice as deadly. In fact, 1 in 7* African American men will be diagnosed with prostate cancer in their lifetime. Al states, “The problem for African American men [being more affected by prostate cancer] is . . . any number of reasons from genetics to access to health care, . . . so we want to make it [information] available and let people know they got to get checked.”

Representation matters. Despite showing an overwhelming majority in prostate cancer diagnoses and related deaths, African American men are still significantly underrepresented in prostate cancer clinical trials.

Clinical trials are research studies that involve the use of volunteer human participants to explore if an investigational drug is safe and effective for the general public to use.

There are a few possible reasons why participation in clinical trials among African American men is low:

1. Lack of awareness, physician bias, and assumed unwillingness to participateA primary barrier for African American men to participate in clinical trials is simply a lack of access to information. Unfortunately, physicians often make assumptions about the willingness or lack thereof of African Americans to participate in clinical trials and are less likely to initiate a conversation and inform their African American patients of available clinical trials for which they may qualify..
2. Distrust in healthcare systemAfrican Americans generally have a distrust in the medical system due to a history of exploitation and inhumane treatment from the medical community in the United States. Unethical experiments such as the Tuskegee Syphilis Experiment has made a long-lasting impact on how African Americans view their healthcare providers. This is particularly evident among African American men. Unfortunately, Black doctors only make up about 5% of active physicians according the Association of American Medical Colleges’ 2018 U.S. physician workforce data. Distrust has been well documented as a reason for lower participation of Blacks in clinical research and low prevalence of Black doctors may be a contributing factor to African American men’s willingness to participate in clinical trials.
3. Physician bias and perceived patient intelligenceA van Ryn and Burke study found that physicians typically perceived African American patients as less intelligent and two-thirds more likely to adhere to the physicians prescribed method of care than White patients. Based on the results from this study, it’s possible that the implicit bias of some physicians influences a physician’s ability or willingness to engage in a conversation about clinical trials, because they assume that their African American patients will not understand. This bias further contributes to the gross underrepresentation of African American men in clinical trials.
4. Racial bias in perceived pain assessments and treatmentAfrican Americans are often subjected to false perceptions of biological differences concerning pain when compared to White Americans. This misconception often leads to healthcare providers under assessing the level of pain African American patients experience and are therefore less likely to take action with proper care and adequate treatment options. Often the “wait-and-see” approach to patient care is taken versus proactive approaches. There are no symptoms in early stages of prostate cancer. And unfortunately, for African American men, if their prostate cancer has progressed and they’re experiencing discomfort, their pain is likely to be minimized by their physician. This further contributes to the distrust African Americans feel towards the healthcare system and could also be a reason why African American men often choose to not go to the doctors – feeling that their concerns will not be addressed or validated.
5. Men – regardless of race, don’t go to the doctorA survey from the Cleveland Clinic’s annual “MENtion It” campaign revealed that 65% of men avoid going to the doctor as long as possible. And when they actually do go, 20% aren’t honest with their doctors about their health and 37% said they withheld information from their healthcare providers. Medical avoidance is a real issue for all men.

In an interview with Al Roker and co-hosts on the TODAY show Dr. Carol Brown, a cancer surgeon and Director for Diversity and Health Equity at Memorial Sloan Kettering Cancer Center states, “African American men are 50% more likely to get prostate cancer and unfortunately they’re twice as likely to pass-away from prostate cancer than White men are in the United States.” She continues, “Screening saves lives. And African American men need to get screened . . .starting at age 40.”

It’s unclear why African American men are more susceptible to prostate cancer and have greater fatality rates than other racial groups. More research is needed. Unfortunately, due to a lack of representation of African American men in prostate cancer clinical trials, Black men continue to be at a disadvantage.

The presence of African American men is needed in prostate cancer clinical trials. With their participation, researchers can study the biology of prostate cancer in African American men as well as the effects and potential risks of current and future treatment options.

Participation is completely voluntary, and participants can stop at any time. African American men who are interested in participating in a prostate cancer clinical trial, should speak to their healthcare provider or visit BMSStudyConnect.com

*Source: Centers for Disease Control and Prevention. United States Cancer Statistics: Male Urologic Cancers. USCS data brief, no 21. https://www.cdc.gov/cancer/uscs/about/data-briefs/no21-male-urologic-cancers.htm

The post Turning Pain into Purpose: Al Roker Shares Prostate Cancer Story, Urges Black Men to Get Tested appeared first on Black Health Matters.

1) It dismantled the pandemic playbook left by the Obama administration, though epidemiologists have been saying for at least the last decade that viruses run amuck were coming.

2) Warned that a novel coronavirus was brewing, the administration stuck its head in the sand.

3) Too late, it closed the borders to flights from China, even though the virus had already spread to other parts of the world and slid easily into New York in record-setting numbers in January and February.

4) The coronavirus task force promised testing “like we’ve never seen” back in February; it’s October, and we still don’t test in high enough numbers.

5) Contact tracing has been problematic to nonexistent throughout the pandemic.

6) We spent far too long checking people who met only a specific set of criteria, while letting community infections spread across the states like California wildfires.

7) The Defense Production Act, which allows the president to compel manufacturers to pivot from building regular materials to creating supplies needed to fight a current crisis, was never put into play effectively. The gang of thieves in power in Washington, D.C., cared more about lining their pockets than providing protective equipment to essential workers. States were left to fend for themselves for medical supplies in high demand around the world.

8) Mask mandates were delayed—or nonexistent. Once the Centers for Disease Control and Prevention and the Surgeon General reversed course and announced that masks may save lives, the administration went out of its way to politicize them. People in large swaths of the country still refuse to wear face masks for reasons as varied as personal freedom to misinformation about carbon dioxide poisoning.

9) We locked down for six weeks without taking appropriate steps to squash this virus and allow folks to get back to the normal so many crave. In essence, we stayed home for no reason in the spring.

10) States reopened, at the president’s urging, though little had been done in most of them to flatten the curve.

11) At every turn, the president downplayed the seriousness of COVID-19, though recorded interviews released in late summer show he knew from the start that it was deadly and had the potential to disrupt life in this country. Even now, with 8.6 million cases and counting, plus more than 226,000 dead Americans, he still refuses to take action, instead blaming China and saying we’re making remarkable progress and “the virus will disappear soon.”

Don’t even get us started on the way the return to schools–both secondary schools and colleges–has been mismanaged in nearly all 50 states, and how efforts to protect health care professionals, first responders and people of color haven’t been any kind of priority.

Americans have been lied to, lost jobs with little financial cushion from the federal government (other countries have provided monthly cash stipends to their citizens; we saw a one-time paltry sum six months ago) and had our lives placed in jeopardy throughout nine months of this virus.

It’s no wonder talk of the race to a vaccine doesn’t find us rushing to the front of the line. A survey earlier this month found that overall, just 58 percent of the American public was willing to get vaccinated as soon as a vaccine is ready. Black Americans in the poll were far less interested in a coronavirus vaccine than white folks, with 43 percent of us saying we’d roll up our sleeves versus 59 percent of our white counterparts. These numbers suggest Americans are concerned the regulatory approval process for a COVID-19 vaccine has been politicized by the administration, and we fear what the current leadership pushes onto the public won’t be safe or effective.

Kizzmekia Corbett, a viral immunologist at the National Institute of Allergy and Infectious Diseases Vaccine Research Center at the National Institutes of Health, tried to allay those fears at the Black Health Matters Fall Summit.

“The vaccine development process for COVID-19 (and vaccine development in general) is just that—a process,” Corbett said. “Vaccines that come out at the end of that process are vetted to ensure the general public is safe when receiving vaccines.”

During normal times, Corbett explained, vaccine development can take 10 to 15 years. But scientists have been doing coronavirus research for years.

“When the MERS, another coronavirus, outbreak occurred [in 2012], we researched MERS and how to make a vaccine. From 2013 to 2019, we did extensive work on coronaviruses,” she said. “We came together December 31 [2019] when we suspected this might be an outbreak of a coronavirus. We’d already done the work that previously would’ve meant starting from scratch, and we moved very quickly to phase 1 clinical trials.”

This level of knowledge and collaboration enables researchers to shorten the clinical trial process. There are currently multiple vaccines in phase 3 clinical trials, with 30,000 to 40,000 people in each of these trials. “As we learn more at each phase of testing, we’re able to give results to FDA and access for approval while we’re still working on the next phase. There is a system in place that is ensuring the safety of the vaccine that comes out of the clinical trials,” Corbett said. “Although you hear ‘Operation Warp Speed,’ we’re not taking any short cuts.”

But Corbett understands the reluctance, particularly among the Black community.

“One of the things that makes our community hesitant is we see people who don’t look like us are telling us we need to be the first people to get this vaccine,” she said. “The history behind medical institutions and medical experiments taking advantage of black people makes us have some very embedded hesitancies.”

She shared that she has faced accusations of being put in place to be the face to make sure black people got the vaccine. “That is simply not true,” Corbett said. “I’ve been doing this work since I was 16. I chose to be the face of what is my intellectual property because it’s important not just for people from this side, but also for young Black people to understand that being a scientist is attainable and possible.

“There are pressures from multiple directions on this vaccine development. The FDA is doing an amazing job of making sure this vaccine is deemed safe and efficacious at the end of the day. Every single piece of data we generate can be picked apart. Safety protocols have been vetted. The safety of people is most important.” 

The post The Race to Create a Coronavirus Vaccine appeared first on Black Health Matters.

We are the core from which everyone must grow, learn, thrive and prosper, but under continuously adverse conditions. Our nurturing skills go far beyond the daily norm of checks and balances that other women use. Our instincts are sharp and certain because they have to be. We inherited that faculty from our mother, who inherited it from her mother. These are not uncharted waters, and we innately know which way to steer our children and men in order to help them reconcile their helplessness in the face of unwarranted injustices.

Now, more than ever, it’s important to utilize our instincts and nurturing skills for ourselves, and we look at every possible option when faced with serious health issues like breast cancer. Today, clinical research can be an untapped resource, particularly if you’re living with breast cancer. Clinical studies are at the heart of progress in finding new and more effective medicines. And since October is Breast Cancer Awareness Month, what better time to get involved?

Bristol Myers Squibb, a global biopharmaceutical company, has formalized the perfect starting point for patients to research clinical trials for breast cancer and other serious diseases.

BMSStudyConnect.com is the pathway for patients, their caregivers and physicians to learn more about how clinical trials work and how they might be part of making sure new medicines are effective and safe. The site provides patients with the full spectrum of the clinical study process so they can have a more active role in their health care. If you choose, you can read about other patients’ stories.

BMSStudyConnect.com has made it possible for a wider variety of patients to take advantage of clinical studies. What’s more, BMSStudyConnect.com not only allows you to search for clinical trials by disease and location, but you can also pre-screen for a trial to see if you are a match. You’ll find everything you need to know to become a confident participant. For more information, please visit BMSStudyConnect.com.

The post Trust and Thrive appeared first on Black Health Matters.

“What are they doing to convey the importance of trials to the people themselves and change the negative perceptions they’ve had for generations?” asked Pruitt, the medical initiatives chair of the Southern District of Omega Psi Phi fraternity.

They can and should do more, he said. Primarily, they can directly connect with Black and other minority communities, speaking to them in person; and engaging churches, fraternities and sororities, minority medical groups and previous trial participants to help them spread the word.

And, he added, go in with the understanding of why those communities are so reluctant to let companies use them in tests, even in the service of treating their illnesses better.

“Some of the larger clinical trials and studies that are not inside our communities probably need to hear our concerns,’’ Pruitt said. “Past transgressions against the Black community have caused us to have a little bit of apprehensiveness, so that needs to be understood by some of the drug companies, and coddled a little bit so they understand why we tend to not want to enter clinical trials at the same level as the rest of society.’’

The apprehensions are well known to everybody on both sides, often exemplified by the notorious Tuskegee Experiment involving studying untreated syphilis in Black men for decades during the last century. Continuing to tell Black people today of any age that those days of blatant medical exploitation are long in the past can only go so far, Pruitt said.

Thus, he said, the medical industry has to meet them at least halfway, if not more. One potential solution is convincing young people to participate, at the phase I level of trials, because they don’t have the first-hand experience or are further removed from the atrocities of the past.

“They’re a little bit more trusting,’’ Pruitt said, “and that might be an entry point, and maybe even a point to talk to a grandma or parent and say, ‘Hey, I just did a clinical trial, I was fine, everything was good, maybe you should come down.’”

There are more protections in place for trial participants today, from the industry and federal law, than there were in past decades, Pruitt said. The lay members of the trials’ institutional review boards serve as both necessary watchdogs as trials are constructed by drug companies and overseen by the Federal Drug Administration, and as avenues into underserved communities for companies trying to make the trials more diverse.

The theme that ran through Pruitt’s suggestions was that diversity was necessary in every aspect of clinical trials, including the people trying to expand the pool.

“Bottom line,’’ Pruitt said, “people feel more comfortable when they see someone in charge that looks like them.’’

—David Steele

The post Clinical Trials Challenge: Get Black Folks Involved appeared first on Black Health Matters.

Among all the pink ribbons, the walks, the professional sports donning pink for a game in October (Breast Cancer Awareness Month), Sheila hadn’t seen anything specific for anyone that looked like her. But despite this lack of representation in breast cancer awareness and education campaigns, Black women on average are 40 percent more likely to die from breast cancer than white women with the disease—a fact that has taken Sheila down a path of learning, advocating and educating. 

Since being diagnosed, she has worked with Living Beyond Breast Cancer, Young Survival Coalition, Story Half Told, National Breast Cancer Coalition and Susan G. Komen. Most recently, Sheila has been involved with Find Your MBC Voice, an initiative from Pfizer Inc., helping to empower women and men living with mBC to take an active role in making a shared decision with their doctor about their treatment plan. 

Ten years after her diagnosis, Sheila still appreciates the small miracles, like her daughter graduating from college and finding love with her now-husband. She says those miracles have been possible in large part because of her relationship with her oncologist, who worked hand in hand with her to ensure she was aware of all possible treatment options, including a clinical trial, which enabled Sheila to receive a new treatment that worked for her type of mBC. 

However, participation in clinical trials is not the norm for many Black women with breast cancer; in a recent analysis of cancer clinical trials, only 6.2 percent of participants were Black. Black women and men are underrepresented in cancer clinical trials, leading to both a lack of significant data in this population of patients and thus deriving less benefit from advancements in the field. These findings highlight that it is critical for people with the disease to speak up and ask their health care providers about ongoing clinical trials. 

Speaking up can start with educating friends and family on the importance of seeking annual breast cancer screenings and mammograms. Encourage them to be screened regularly, too. This year more than ever, it’s critical to continue annual check-ups. No matter the outcome of those screenings, its important Black women and men find their voice and speak up about their treatment wants and needs with their doctors. A good resource is Find Your MBC Voice, which provides people living with mBC with information on how to speak up with their doctor about their treatment options and provides tools such as the Treatment Discussion Guide. 

Sheila was recently featured in the September 2020 issue of O, The Oprah Magazine, and hopes her story will inspire others to have discussions with their doctors about all possible treatment options, including clinical trials. In the article she shared, “My life is not about me anymore—it’s all about who I can help. I want to encourage mBC patients to simply wake up and live each day, and to see that you can live a joyous life with cancer. Know that I am out there fighting for you, and you are not alone.” 

Raising awareness hasn’t been easy, but the fact that Sheila’s story is shared at the national level is a great example of changes that are happening to ensure equal representation for Black patients impacted by breast cancer. 

For additional information and resources on living with metastatic breast cancer or how to support someone who is, visit FindYourMBCVoice.com.  

Sponsorship provided by Pfizer

The post Amplifying Black Women’s Breast Cancer Stories appeared first on Black Health Matters.

Nowhere is this skill more important than when we use that power to support a sister in her battle against breast cancer. This means speaking up for women less fortunate than we are, choosing collaboration over competition and helping women be proactive about their health. We also uplift when we help a woman advocate for her well-being when it comes to breast health. This includes the importance of knowing their own breasts and making sure they get an annual mammogram.

We can also support our sisters when we talk to them about the importance of participating in clinical trials. Clinical research opens more possibilities, especially for women living with breast cancer. In fact, clinical research is at the forefront of finding new and more effective treatments.There’s no better time to talk to one’s mother, grandmother, aunt or sister about clinical trials and let them know we’re there for full support.

It’s also a time to learn why inclusiveness is important to the research process and why Bristol Myers Squibb is committed to diversity at all levels. As a leading, international biopharmaceutical company, Bristol Myers Squibb has developed a comprehensive website for patients to research clinical trials for breast cancer and other serious diseases. BMSStudyConnect.com is a pathway for patients, their caregivers and physicians to learn more about how clinical trials work.The site provides patients with the full spectrum of the clinical study process in order to take a more active role in their health care.

BMSStudyConnect.com has made it possible for a wider variety of patients to take advantage of clinical studies. What’s more, BMSStudyConnect.com not only allows patients to search for clinical trials by disease and location, but also pre-screen for a trial to see if they are a match. It’s a one-stop shop to find everything essential to become a confident participant and support for a sister. Visit BMSStudyConnect.com for more information.

The post Support a Sister appeared first on Black Health Matters.

African Americans are significantly underrepresented in clinical research in the United States. Because of this underrepresentation, we don’t know if many of today’s medicines are equally safe and effective for us.

African Americans represent 13.4 percent of the population, yet the FDA reports that only 5 percent have participated in a clinical trial. There are many factors for this, which include limited access to health care and cultural suspicions of the medical establishment. A major reason African Americans don’t take part in clinical trials is because they don’t know about them or understand about the possibility of clinical trial participation.

Increasing diversity in clinical research will ultimately improve relevance of discoveries and health equity. This is where Bristol Myers Squibb, an international biopharmaceutical company, excels. BMS has initiated breast cancer clinical trials. What’s more, through BMSStudyConnect.com, an online resource that allows patients to familiarize themselves with the clinical trial process in the privacy of their own home, the company has established an ideal way for patients to learn more about clinical research.

For more information about clinical trials, visit BMSstudyConnect.com

The post Did You Know: Black Women Not Represented in Breast Cancer Clinical Trials appeared first on Black Health Matters.

However, as Memorial Sloan Kettering head of thoracic oncology Paul Paik, M.D., told his virtual audience at July’s Black Health Matters Summit, more information is needed on how effective the usage is for diagnosing the disease among Black patients. The flaw is familiar to medical researchers in every field: clinical trials that still do not represent all demographics.

The 2011 study that led to the increase in CT scan usage in lung cancer screening had about 53,000 participants, Paik said, but only some 4.5 percent were African American. The main culprit was proximity to the trial location, he said, illustrating his point with a map of the areas that matched high-concentration areas of lung cancer among Black patients, with widespread lack of access to screening-related trials.

“You see big deserts, big patches, where there is no clinical trial access, where there is a significant proportion of African Americans who have been diagnosed with lung cancer,’’ Paik said. “So this gets at the issue, again, of disparity; it gets at the issue of proximity, it gets at the issue of why we’re talking about this (now).’’

Memorial Sloan Kettering Cancer Center’s Lung Cancer Screening Program helps solve the problem in its geographic area, and the center’s website and that of other cancer advocacy organizations can direct potential participants to available trials.

In addition, Paik is leading two phase II clinical trials at the center for drugs to treat non-small-cell lung cancer, the most common version of the disease.

The effort to get the screening to the most people possible is absolutely worth it, Paik said, because according to the 2011 study, the CT scanning has led to 20 percent fewer lung cancer-related deaths as compared to diagnoses revealed through conventional chest X-rays.

The Memorial Sloan Kettering screening program focuses on patients aged 55 to 80 who have smoked the equivalent of one pack a day for 30 years, and are either current smokers or have quit within the past 15 years. Research still indicates that having quit for 15 years or more decreases the chances of a lung cancer diagnosis, Paik said.

With that, he added, the percentage of that form of lung cancer among non-smokers, or very light or long-stopped smokers (“collegiate smokers,’’ Paik called that category) remains stubbornly high. 

Even with the number of smokers continuing to decrease, the percentage of non-smokers diagnosed stays around 20 percent, and that complicates results of studies of CT screening, because they fall outside of the high-risk category. Paik said researchers continue to work to find ways to best use CT screening to bring that number down.

One of the larger concerns of those considering CT screening, Paik said, was the level of radiation—but, he said, the test lasts just about 10 minutes, and the exposure is roughly the same as “if you fly from New York to California and back.’’

More of an obstacle, he said, was the still-widespread, historically grounded skepticism from Black potential trial participants that they are being used as lab experiments. More open communications with, and from, their health-care providers can ease that skepticism, he said.

“The decision-making process is going to be a shared one,’’ Paik said. “It’s something that you’ve got to feel comfortable with. It has to make sense for you.’’

—David Steele

The post Getting Black Folks to the Best Lung Cancer Screening appeared first on Black Health Matters.

So, we back up and try to decide what to do next. But what needs fixing if we feel we’re doing everything right? We think twice and spend more for the food we eat in an effort to safeguard our health. We see doctors regularly, control our blood pressure, take meds as prescribed and have annual tests as directed. So, of course, there’s no doubt that we’re on the right track.

Using proven knowledge and experience to stay well is always a smart move, especially when it involves serious health issues like breast cancer. And finding a new, unexpected resource can really lift your spirits. A force in the field of innovative medicines, Bristol Myers Squibb may be a resource you want to consider. An industry leader in international biopharmaceuticals, BMS has initiated new, global breast cancer clinical trials. What’s more, they’ve established an ideal way for you to learn more about them. BMSStudyConnect.com is an online clinical resource that allows patients to familiarize themselves with the clinical trial process in the privacy of their home. This is an invaluable opportunity for you or anyone you know, including men, living with breast cancer. Check it out for yourself, and please be certain to pass it on.

When we look back over all we’ve done to stay healthy and maintain a positive outlook, we can rest assured that you’re giving yourself quality care. Being positive is a power that feeds mind, body and spirit. What’s more, it’s the very framework that promotes an overall healthier life and better treatment outcomes. Keeping mind, body and spirit aligned should be everyone’s objective. It improves your outlook and it has positive effects on every part of your life.

The post Positive Outlook for Positive Outcome appeared first on Black Health Matters.

The vast differences in breast, lung, colon and prostate cancer mortality rates were bad enough, said Dr. Brown, a gynecologic oncology surgeon, director of the Office of Diversity Programs in Clinical Care, Research and Training at the Memorial Sloan Kettering Cancer Center, and the second-ever African American president of the Society of Gynecologic Oncology. 

Then there were the rates for uterine cancer—a five-year survival rate that is 20 percent lower for Black women as compared to white, a gap that has stayed constant for 30 years. 

“That’s crazy, and that’s unacceptable,’’ Dr. Brown said.

Her colleagues have worked to close the gap, she said, partly by becoming a resource for patients seeking clinical trials to enter, and largely because the Memorial Sloan Kettering Cancer Center focuses on giving equal access to trials to all of its patients, regardless of race, income or ability to pay. While nationwide Blacks and other people of color make up a fraction of clinical trial participants, Dr. Brown said, one out of every three patients treated at the center participates in them.

Taking part in a trial, she said, “is actually the best way to level the playing field for Black people affected by cancer.’’ 

Among the many benefits for Black patients include early access to treatment proven by the trials to be effective before it is available to the general public, and access to the best physicians in the best facilities.

“It’s a really good way to make sure that you’re getting very intense, high-quality care,” Dr. Brown said, pointing to advances in uterine cancer treatment that emerged from trials conducted by her Memorial Sloan Kettering colleagues that zeroed in on the biological differences in the types of cancers that disproportionately affected Black women.

As an example: Memorial Sloan Kettering’s website lists 12 clinical trials currently underway solely for uterine cancer, including one on the effect of acupuncture and another on how a keto diet affects treatment of overweight patients. Dr. Brown pointed out that such alternative treatments were purposely included because of patients’ desire to know all their options.

Cancer.gov, the site for the National Cancer Institute, also lists available clinical trials nationwide, for those outside of Memorial Sloan Kettering’s service area.

To help their own treatment and to improve the research and results, Dr. Brown said, patients must advocate for themselves and directly ask their primary care physician or oncologist about joining clinical trials. Consider that if the patient doesn’t, possibly no one will: “Physicians often have biases and are not educated about the groups they’re serving.’’

And the patients have to overcome their fear, not only of their own disease, but of the history of negligence and abuse toward Black patients. 

Dr. Brown said she is asked often about whether trials can be trusted, with the memory of the notorious Tuskegee experiments in mind. Clinical trials are not experiments, she made clear, and patients are not signing up to be lab rats.

“There’s nothing for you to be afraid of, except not getting treatment for your cancer and not finding out about it,’’ she said.

—David Steele

The post Closing the Gap: Providing Equal Access to Clinical Trials appeared first on Black Health Matters.

By then, Whyte was starting to worry. “I was seeing black spots and wasn’t able to see out of my right eye,” she recalls.

Her appointment with an eye doctor ended with a recommendation to see an ophthalmologist who suspected multiple sclerosis, a diagnosis that was confirmed soon after by a neurologist at Whyte’s local hospital.

Thinking back, the Detroit resident admits to minimizing her symptoms. “I was treating it more as a joke,” she says, noting that her eye issues and periodic challenges with walking were signs that something wasn’t right.

Multiple sclerosis is a chronic disease that attacks the nerve cells in the brain and spinal cord as well as the optic nerve. Considered an autoimmune disease, MS causes inflammation and damage of myelin, a protective covering on nerve cells that helps them conduct electrical signals. As a result, the electrical impulses needed for the nervous system to communicate with the body don’t travel properly through the nerves.

Whyte was diagnosed with a form of the disease known as relapsing-remitting MS, characterized by symptoms that periodically flare up but then subside.

Like Whyte, many individuals with MS experience optic neuritis, a condition in which the optic nerve that connects the eye to the brain becomes inflamed. Optic neuritis is often the first symptom of the disease. Other symptoms may include muscle spasms, weakness, numbness and extreme fatigue.

Whyte’s diagnosis left her “scared to death.”

“I was angry and frustrated and I cried a lot,” she says, admitting that she made the mistake of turning to the internet for information about the disease. At one point, Whyte became so depressed that she contemplated taking her life.

“I secluded myself from friends,” says the self-proclaimed people person.” “I knew I needed to get help so I could take care of myself and my family.” Whyte, who has 4 children, including a son who was two at the time of her diagnosis, says antidepressants helped. And when she discovered that one of her MS medications might be adding to her depression, she sought a new one.

“Within 60 days I was feeling so much better on the new medication. It was a pill instead of a daily injection.”

After that, there was no holding her back.

“I made a decision to do more to help others living with multiple sclerosis,” she says. Inspired by a speaker at an MS seminar who told the audience, ”You can do whatever you want with MS,” she took the message to heart. “That speaker motivated me,” says Whyte, who is now a speaker at various MS events.

Whyte tells her story without holding back. “I talk about depression. It’s real. It’s there. It needs to be talked about,” she says. “As long as one person can understand my story—hear my story—and connect with it, I’m happy. It’s my way of giving back.”

Another important message she shares is an extension of the one that first inspired her: “You can do whatever you want to do with MS, but do it in moderation.”

Whyte speaks from first-hand experience as she, like many MS patients, battles extreme fatigue.

“Fatigue is one of the most common symptoms of multiple sclerosis, occurring in up to 90 percent of persons with MS,” says neurologist Tiffany Braley, M.D. “Fatigue can occur at any stage of the MS course and, because it can significantly impact daily occupational, social and family function, it is an important symptom to identify and manage early.”

“When I was diagnosed, I had a young child,” says Whyte. “I had to learn to do things in moderation. For example, I don’t do well when the weather is hot, so now when I’m at my son’s football games, if I get too hot, I go to my car and sit in the air conditioning until I feel well enough to go back and watch.”

In keeping with her desire to help other MS patients, Whyte participates in clinical trials and studies that focus on multiple sclerosis. “I’m committed to these studies because without us, how do they know what will work?”

One study, known as the COMBO-MS trial, brought Whyte to Michigan Medicine. This clinical trial, led by Braley and Anna Kratz, compares the effectiveness of telephone-delivered cognitive behavioral therapy and a medication known as modafinil, either alone or in combination, to treat MS fatigue.

“While both treatments have been shown to help MS fatigue, these treatments have never been studied together to see if their combination may lead to more benefit,” says Kratz.

“Pharmacological treatments, cognitive behavioral therapy, mindfulness-based strategies, exercise regimens and dietary modifications have all been studied for MS fatigue with some promise,” says Braley. “Addressing sleep problems is another important strategy that often gets overlooked, and is a main research focus at our MS Fatigue and Sleep Clinic.”

The Center is a first of its kind clinic that is focused solely on the evaluation and treatment of fatigue and sleep problems (which often contribute to fatigue) in individuals with MS.

Despite much progress, says Braley, “We still need more information on how to tailor these treatments to each patient, depending on their fatigue type and other characteristics. MS is a highly individualized condition, and we cannot continue to rely on a one-size-fits-all approach to fatigue management.”

Whyte says she had energy in the mornings, but by 2 or 3 in the afternoon she was exhausted. The COMBO-MS study was good for the 50-year-old for many reasons. In addition to medication that helped her combat fatigue, Whyte learned the importance of exercise and healthy breathing techniques through cognitive behavioral therapy.

“I started exercising more—walking up and down the steps and riding my recumbent  bike. Before I knew it, it was 7 p.m. and I wasn’t exhausted,” she says. “Exercise gives you more energy. I make myself do it because it works. The breathing techniques really calm me when I’m feeling overwhelmed. They help me think more clearly,” she says, noting that she’s brought them into her everyday life.

Now symptom-free, this multiple sclerosis warrior is continuing to exercise, practice deep breathing and support her MS family. “I tell them, talk with your doctor, get on the medication you need for MS and depression if necessary.”

Whyte says she has to stay healthy for her MS family. “I’ve gotten calls from other MS patients looking for advice. I try to give them reassurance and resources for help. One thing we have in common is MS. It’s OK. You’ll have good and bad days. Just do the best you can. Don’t stop. My feeling is, I’m still young. How can I make things better each and every day?”

From Michigan Health

The post Multiple Sclerosis Warrior Dedicated to Helping Others appeared first on Black Health Matters.

The new PSA follows campaigns by actors Sonequa Martin-Green and Jaime Camil, and features a personal call to action from Cedric the Entertainer to learn more about cancer clinical trials. Cedric the Entertainer, whose acting and producing credits include CBS’ “The Neighborhood,” “Cedric the Entertainer Presents” and “The Last O.G.,” has been supporting Stand Up To Cancer since 2018, and was inspired by his mother’s 2009 uterine cancer diagnosis to become an advocate for the cause.

“My mother’s cancer journey taught me about the value of advocating for yourself and knowing your options,” said Cedric the Entertainer. “Participation in cancer clinical trials is extremely low in the Black community, and I am proud to work with Stand Up To Cancer and take action to address this important issue.” 

“We’re honored Cedric the Entertainer has joined us to raise awareness about the importance and benefits of cancer clinical trials,” said Stand Up To Cancer CEO Sung Poblete. “The incredible altruism of the entertainment community has helped us advance our goal of delivering more cutting-edge research and resources for cancer patients in diverse communities, who need our support now more than ever.” 

SU2C’s Health Equity Initiative, announced in January 2020, aims to increase diversity in cancer clinical trials to ensure patients of all racial and ethnic backgrounds benefit equally from the potential of cancer treatments, and that research addresses differences in genetics, metabolism and physiology. Currently, data from the FDA shows only 4 percent of total cancer clinical trial participants are Black, and 5 percent are Hispanic, despite the fact that people of color have the highest mortality rates and shortest overall survival rates for most cancers. 

SU2C has implemented new procurement requirements for all future research grant proposals to determine whether the research area of focus impacts a specific minority population. These procurement requirements will require that all proposals provide plans for patient recruitment and retention of historically underrepresented populations.

To learn more about cancer clinical trials, visit StandUpToCancer.org/ClinicalTrials. Cancer patients are particularly vulnerable to COVID-19, especially those contending with cancers of the lung or blood, and those whose treatment suppresses the immune system. For COVID-19 resources, visit StandUpToCancer.org/COVID19.

The post Cedric the Entertainer and Stand Up 2 Cancer Join Forces to Increase Awareness of Cancer Clinical Trials appeared first on Black Health Matters.

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The post Clinical Trials Save Lives appeared first on Black Health Matters.

A triple negative breast cancer diagnosis is devastating. To date, there have been no TNBC-specific treatment options and it is the only breast cancer sub-type that does not have a drug to prevent recurrence. According to the only national study conducted for TNBC and black women, African American women have 2.3 times higher odds of being diagnosed with triple-negative breast cancer. Among women diagnosed with breast cancer, those diagnosed at late stages were 69 percent more likely to have triple-negative.  

Metastatic (stage 4) triple negative breast cancer is an aggressive cancer with one of the poorest prognoses due to a lack of existing treatment options. The five-year survival rate is less than 30 percent. I have too often seen the debilitating impact on the quality of life for my breasties (the name I call my breast cancer sisters) with late-stage cancer who have had an extensive treatment history.

Well, someone at Immunomedics must have heard me whining and went to work to find a solution, and I am thankful that I am blessed to be here to see this day.

Trodelvy from Immunomedics is here! This new drug will give the precious gift of time to my metastatic TNBC sisters. I have been an ambassador for the Immunomedics Live Humanly Campaign, a social media platform for cancer warriors and survivors. I’ve been blessed to meet several breasties who participated in the clinical trial research and watched them go from struggling with their disease to thriving and living their best lives. I watched Trodelvy give them light and hope and the most precious gift of time.

Trodelvy is the first FDA-approved ADC treatment option for patients with mTNBC who have received at least two prior therapies for metastatic disease. This new treatment option brings hope to our mTNBC  breasties and their loved ones. Trodelvy allows our warriors to maintain a consistent treatment regimen for a longer period of time, with relatively manageable tolerability, giving them a good quality of life.

“The triple negative breast cancer community is encouraged by the launch of Trodelvy,” said Hayley Dinerman, co-founder and executive director of the Triple Negative Breast Cancer Foundation. “Time and hope are precious gifts for our metastatic warriors.”

Remarkably, 7.4 percent of the Trodelvy clinical trial participants were African American women. This may not sound like a lot, but since 2015, the breast cancer drugs approved by the FDA have had a paltry 2.5 percent black participation. This participation level is unsurpassed and speaks volumes of Immunomedics and their commitment to addressing the specific needs of breast cancer in black women.

“As a TNBC patient, it was overwhelming to be diagnosed with an aggressive form of breast cancer with no targeted treatment,” said Maimah Karmo, president and founder of the Tigerlily Foundation. “For 14 years, as a patient advocate and leader, I’ve been committed to helping patients get the right treatments when they need it, and, until now, we have had no treatment for TNBC MBC patients. Thanks to Immunomedics, we now have Trodelvy, which will make a difference in many lives. We are thrilled for the many patients who now have hope and a new treatment option.”

Immunomedics is a change agent and Trodelvy is a game changer. As a very blessed TNBC survivor, I embrace my responsibility to stand up and fight like a girl for my warrior sisters. Let this be a message to our TNBC community that many prayers have been answered! Help me spread the word that Trodelvy is readily available and will give my TNBC breasties the opportunity to live their best lives. Ask your doctor, breasties, and get more information at Trodelvy.com.

—Ricki Fairley

The post It’s a New Day for Triple Negative Breast Cancer Breasties appeared first on Black Health Matters.

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My daughter, a senior in high school, is an essential worker for a national grocery store chain. Since the statewide announcement of school closings, she was offered full-time hours to work as many days during the week that she wants. Gradually, the national chain has been implementing strategies like social distancing inside the store, but has not made any store policy on employees wearing masks. Basically, you can wear them if you purchased your own.

Based on the 5 p.m. city curfew, the police have the right to stop and detain you for being outside past that time. Before the curfew was put in place, her twin brother would walk to the bus stop to pick up his sister and escort her home. All essential workers were given a letter from their employers to show the police if they are detained. As a mother, I began to imagine my son walking along, being stopped and when reaching for the essential worker’s letter, an overzealous officer mistakes the gesture for reaching for a gun.

Now, I pick up my daughter by car from work every night. Every night I risk infection alongside her, before she can get home, isolate her work clothes and take a shower. My daughter shows no signs of the virus, but as many other essential workers, they are completely unaware if they are carriers or simply asymptomatic. As a seven-year cancer survivor, I worry every single day if my immune system is strong enough or if having been treated for cancer will subject me to infection.

Now the data is emerging in Chicago about the increased number of COVID-19 deaths in the African American community. I scrolled through my social media newsfeeds and I’m taking note of the mood of my Facebook friends. Initially, the mood ranged from indifference to posting humorous memes that took jabs at the word coronavirus and hoarding toilet paper. Slowly, as our elected officials began talking of school closures, people were complaining about childcare costs, but still no measurable conversations about keeping safe or understanding the virus itself.

As the “wash your hands/stay-at-home order” emerged, I could still see some ambivalence in people’s postings until the first African American woman in Illinois died of coronavirus. That’s when the mood shifted.

The school closure was extended, and so was the stay-at-home order. More and more, people began pointing the finger and taking pictures of people not practicing social distancing or not wearing a mask in public. Conspiracy theories began to emerge as even our president called it the “Chinese” virus. Nevertheless, most people dealt with the anxiety of the spread of the virus by posting lighthearted memes of our mayor in various places saying, “Stay at home!” Thankfully, she found humor in those memes, but her leadership on the stay-at-home order has been challenged by a few, regardless of race. Two days ago, when she announced that African Americans have the highest death rates in the state from COVID-19, more African Americans began searching for someone or something to blame.

I personally have been challenged by long-time Facebook friends for my position on the subject. I’m seeing a trend of posts where we are shifting the blame for these deaths unto ourselves. More posts of pictures of African American people standing around at night, not practicing social distancing, are used as the evidence as to why their loved ones are infected and or dying. Rarely is anyone engaging in conversations beyond containment, but everyone views the lack of adherence to this social health policy as the direct cause of the increase in deaths from COVID-19 in the African American community.

As a patient advocate with deep concern for health disparities in cancer care, I respond back mentioning pre-existing conditions that make us susceptible to this virus and that neighborhood hospitals are not equipped with life-saving equipment or adequate professional staff to handle this pandemic. It makes sense to some and to others it doesn’t. I’ll just have to keep posting—we are not the problem! Racial inequity in our health-care system is the problem.

I’m extremely worried, as I see so many pharmaceutical companies shifting priorities from discoveries for cancer treatments to developing trials for COVID-19, that old rules will continue to apply: People with pre- existing conditions will not be eligible for these trials.

I wonder as new information emerges, particularly on the alarming rates about the increase of African Americans dying from COVID-19, if scientists are revising their current protocols and enrollment processes to include African Americans as major participants in their studies. Will scientists seek to find African Americans who have recovered from the virus to examine their antibodies in an effort to discover pathways toward immunity? Are health-care professionals tracking the tests for infection, and will scientists create these important serological tests specific to the African American community? Equally important is the role AI will play in the mining of this data and how it can potentially harm our community in medical and economic ways.

Lastly, how will the scientific and medical communities communicate with African Americans about the advances they are making toward the treatment of COVID-19? Will it be a top down approach that will ultimately unleash a whirlwind of mistrust similar to the Tuskegee experiment? I think about all of these things while I apprehensively wait in the parking lot for my daughter to clock out each evening.

Kimberly Richardson is an independent patient advocate working with cancer survivors at the University of Illinois Cancer Center.

The post COVID-19 and the Plea for Equitable Participation in Clinical Trials appeared first on Black Health Matters.

For every prescription medication you take, biopharmaceutical companies go through years of highly regulated and complex testing before they can be made available for patients. It is a long and expensive proposition. On average it costs $2.6 billion to identify, research, and develop a new medicine for regulatory approval before it ever becomes available for your doctor to prescribe. It can also take 10 to 15 years to bring a drug to the marketplace and 12 percent of medicines that begin clinical trials are actually approved by the FDA.

Why Does It Take So Long?
Developing innovative medicines is a long and complex process involving years of research, development and clinical trials. These trials are fundamental to ensuring the safety and efficacy of medicines before they ever reach patients. Biopharmaceutical research companies are working closely with the U.S. Food and Drug Administration on efforts to speed medicines to patients faster while ensuring safety isn’t sacrificed. The FDA and biopharmaceutical companies continually monitor prescription medicines to ensure they remain safe for patients and to research their use in additional patient populations or disease indications. 

African Americans Often Left Out of the Equation
Regulatory approvals for new medicines are based on carefully designed clinical trials. Ideally, participation in clinical trials would be representative of the patient populations impacted by the disease under study. Unfortunately, a lack of awareness about clinical trials, misperceptions about the clinical trial process, and the fact that most physicians don’t talk to their patients about clinical research means that fewer than 10 percent of Americans participate in clinical trials.¹ Lack of participation is even greater amongst minority groups. This failure to achieve meaningful diversity limits information about drug response and measures of safety and efficacy in historically under-represented and under-studied populations, including women, ethnic and racial minorities, children and the elderly. Multi-stakeholder initiatives are required to provide solutions to these challenges.

What Can You Do?
Talk to your doctor about clinical trials that might be appropriate for you and volunteer to participate in trials. There are many reasons African Americans don’t participate, including distrust of the system because of the history of clinical research. The best way to overcome this barrier is through education.

• Be your own best advocate. Do your homework. Sites like clinicaltrials.gov can link you to drug trials for your particular illness and information on what qualifies you for the trial.
• Armed with your research, you can talk to your doctor about getting into clinical drug trials. 
• Participate in clinical research when you can. The only way drug development and medical treatment that addresses the needs of African Americans can come to the marketplace is through participation. And pay attention to what the trial is offering you. Participation does not necessarily mean you will get the drug the trial is testing, you might receive the best standard of care instead.
• Enroll in NIH’s All of Us clinical research program, a national initiative designed to speed up health research and medical breakthroughs, to enable individual prevention and treatment. They are actively recruiting African American participation. 

Innovation Fighting COVID-19
Since the emergence of the novel coronavirus, there has been a robust collaborative effort within the public and private sector to develop potential treatments and vaccines for the virus. As of April 2020, there are over 300 treatments and vaccines in clinical trials, with nearly 50 of those occurring in the U.S.² The decades-long investments biopharmaceutical companies have made in new technologies, research and treatments have prepared the industry to act swiftly to respond to the public health crisis.

What About Testing and Treatment?
In addition to working collaboratively on the development of a vaccine, there have been robust efforts on developing new testing and treatments for coronavirus. Recently, PhRMA member companies adopted core principles that include a commitment to rapidly screen their vast global libraries of medicines to identify potential treatments, and donate millions of doses of existing medicines that have shown potential as treatments to COVID-19. In addition, biopharmaceutical manufacturers across the country are coordinating with government and diagnostic partners to increase COVID-19 testing in communities. 

What About the Costs of Testing, Vaccines and Treatment?
Rightfully so, there has been a lot of talk about how much it will cost the consumer for diagnostic testing, an eventual vaccine, and treatments of COVID-19. The good news is that in March two critical pieces of legislation were passed by Congress and signed by the president which will provide relief to those receiving testing and a future vaccine. The first was the Families First Coronavirus Response Act³, which mandated that health plans, Medicare, and Medicaid provide coverage for coronavirus testing without cost sharing. 

The second was the CARES Act, which addressed the coverage of a future vaccine. For individuals within Medicaid, with Medicare Part B or Medicare Advantage plans, coverage for a vaccine will be offered without cost sharing. For those with a commercial plan, coverage for a vaccine will occur within 15 days of the U.S. Prevention Services Taskforce A or B recommendation, or a recommendation from the Advisory Committee on Immunization Practices. 

Regarding treatment, Medicaid, traditional Medicare, and Medicare Advantage plans will provide coverage of treatments for individuals who become ill with coronavirus. In addition, the nation’s leading health plans⁴ are making numerous affordability options available to their members, including financial assistance and waived cost sharing for in-patient treatment. They’ve also expanded access to telehealth services for those with other chronic conditions. 

—Andrea King Collier

^{1 https://www.researchamerica.org/sites/default/files/July2017ClinicalResearchSurveyPressReleaseDeck_0.pdf
2 Analysis of publicly available databases such as cilnicaltrials.gov, AdisInsights and the World Health Organization’s International Clinical Trials Registry Platform (WHO ICTRP) as of April 8, 2020. 
3 https://www.congress.gov/bill/116th-congress/house-bill/6201/text
4 https://www.ahip.org/health-insurance-providers-respond-to-coronavirus-covid-19/}

The post The Importance of Modernizing the Drug Discovery and Development Process appeared first on Black Health Matters.

The condition can be the result of various issues:

• Virus infection
• Caused by medications 
• Linked to cancer 
• Altered structure or function of kidney after disease or surgery (i.e., diabetes, sickle cell disease, obesity)
• Nonspecific FSGS caused by kidney scarring 
• Genetic mutations 
• Without any known causes 

Recently, researchers have established a strong connection between abnormal variants in genes found in individuals of sub-Saharan African ancestry and the development of FSGS.

The disease can affect both children and adults with males tending to be slightly more susceptible. 

If you have been diagnosed with FSGS, here’s what you need to know now. 

Current Therapies: 

Currently, there are no medications approved specifically for the treatment of FSGS. Treatment involves a combination of drugs tailored to the cause of FSGS, a person’s age and other conditions (e.g. diabetes and obesity). The goal is to greatly reduce protein loss into the urine. 

This is achieved with drugs called angiotensin-converting enzyme (ACE) inhibitors or angiotensin receptor II blockers (ARBs). ACE inhibitors/ARBs are sometimes combined with immunosuppressants such as steroids (e.g. prednisone).

Clinical Trials: 

Clinical trials are another way that patients with FSGS can get treated for their disease. 

Currently, a biotech company called Retrophin is enrolling patients in the Phase 3 DUPLEX Study, to further understand how to help slow the decline of kidney function in patients with FSGS. 

Partner with your nephrologist and talk with family members about participating in the DUPLEX Study. Also, be sure to contact Patient Advocacy Groups such as NephCure, www.nephcure.org, for their specialized assistance. 

DID YOU KNOW…  

The following 10 regions have the highest incidence of kidney failure.  See where your state/region nets out.

RANK STATES/REGIONS

1. Alabama, Mississippi, Tennessee 
2. Georgia, North Carolina, South Carolina 
3. Southern California 
4. Texas 
5. Arkansas, Louisiana, Oklahoma 
6. Maryland, Virginia, W. Virginia, Washington, D.C. 
7. Northern California, Guam, Hawaii 
8. New York 
9. New Jersey, Puerto Rico, Virgin Islands
10. Illinois 

The post Health Priority: FSGS appeared first on Black Health Matters.

What started as a gala in 2010 has evolved into a Sunday brunch and much to its founder’s delight, will go out with a bang in this, its final year, by reverting to its original form: a showy, celebratory shindig complete with corporate vendors, food, libations and celebrity guests. Once Chocolate for a Cure concludes, Bullet plans to shift her focus in a different direction. 

Back in 2010, Bullett, a Martinsburg, West Virginia, native involuntarily took on the breast cancer cause when she received the news that she had the disease, despite having no family history or outstanding risk factors. It was a challenging time for Bullett, who was also going through a divorce. “I knew I had to fight,” she said of when she was unexpectedly diagnosed at age 40. 

Roughly 40,000 women die from breast cancer each year, according to the American Cancer Society, and Bullet is doing what she can to decrease that number with each and every event she hosts. 

“We select three women each year to receive a free mammogram,” she said, which provides a tangible tool to help women in the battle against the invasive disease. 

Bullett counts herself as fortunate in her battle. While she did have a mastectomy on her right breast, she was able to avoid chemotherapy and the prescription drug Tamoxifen has allowed her to avoid a recurrence, a protocol that has worked for her for more than a decade. When it comes to clinical trials although she was not offered the opportunity to participate, she believes in them wholeheartedly. “More black women should be [willing to be part of clinical research] and need to participate in them,” she said. “I would have if I’d had the opportunity.”

The reason Bullett wasn’t given the chance is likely shrouded in passive discrimination. Black people are less likely to participate in clinical trials because of a general distrust of health-care professionals and the cultural legacy of the decades long Tuskegee Syphilis Experiment, among other reasons. 

Despite the historically low numbers of black people participating in clinical trials in general, however, there’s good news on the horizon. Researchers at Indiana School of Medicine have launched a study led by Dr. Bryan P. Schneider, which studies the connection between chemotherapy and a type of nerve damage called neuropathy, which disproportionately affects black women. This is a step in the right direction. According to Schneider, the goal of this trial is “to figure out which chemotherapy would be the best for African American women who are undergoing treatment for their breast cancer.” 

Schneider acknowledged that black women are historically underrepresented in research, and he appears committed to addressing the disparity. The commitment of medical professionals like Schneider, along with the grassroots efforts of those directly affected by such a pervasive disease, just may be the one-two punch needed to make breast cancer a thing of the past. 

—Tamar Leak Suber

The post A Breast Cancer Victor, Not a Victim appeared first on Black Health Matters.

Why is this happening? Why are so many black women dying of breast cancer? One key reason is that we don’t have therapies effective for our physiology. That is because African American participation in clinical research is extremely insufficient. Black women are reluctant to engage in clinical trials and may refuse treatment as a result of our own race-related biases and lack of trust in medical professionals. According to the FDA in eight recent clinical trials involving five drugs approved for breast cancer, just 2.5 percent of clinical trial participants were black.

“We need to look at these statistics and sound the alarm,” said Regina Hampton, M.D., president of Doctors Community Hospital, and co-founder and chief medical officer for Breast Care for Washington, D.C. “Black women need access, trials and answers to figure out why there is not more progress in breast cancer statistics. We need to find innovative ways to make clinical trials available to this community that has deep mistrust in research.”

I am on a personal mission to increase participation in clinical trials. Join me by checking out Ciitizen, an amazing new patient-focused platform to gather, digitize, organize and control your health records and provide an actionable health profile easily sharable with doctors and researchers conducting research that could save your life. 

Ciitizen digitizes and stores your information. It is safely protected in accordance with HIPAA laws and always in your control. If a trial is appropriate, you will be notified and asked if you are interested. If you want to pursue it, the researcher will have instant access to your digital file, which will expedite the process and get you closer to the life-saving medications and therapies that could help you.

“There is nothing more painful to see than a loved one afflicted with cancer,” said Anil Sethi, Ciitizen’s founder and CEO, who started the company following the loss of his younger sister to metastatic breast cancer. “Ciitizen was founded to help patients and their loved ones control their data—something we believe unlocks better care and access to therapies.” Sethi is focusing the company’s efforts on breast cancer, so you’ll need to have your records to be on top of the latest breast cancer research opportunities.

I know you may have fear about getting the “placebo” drug, but all that means is you may get standard of care and not the trial drug. It’s what you would have taken anyway. There is no downside to participating in clinical research. Plus, you get great quality of care and more attention from your health professionals. 

Ciitizen is so committed to helping people that their service is free. They built a website for me to sign people up, and they are paying $10 for each person I sign up to my non-profit organization of choice, which is Sisters Network Inc., the only national African American breast cancer organization. 

I can’t stress enough how important it is to understand the science of breast cancer in black women. Help yourself; help your breasties. Take control of your health records. Give yourself access to medications that could save your life.

—Ricki Fairley

The post Breast Cancer in Black Women Can’t Be Cured Without Clinical Research appeared first on Black Health Matters.

Black women younger than 35 get breast cancer at twice the rate and die at three times the rate. We get triple-negative breast cancer at twice the rate, have poorer outcomes and there’s no therapy to prevent recurrence. And our clinical trial participation is minimal, thereby we don’t have therapies that are effective for our physiology.

Their reaction was, “Wow, Ricki! We are working hard every day to develop cancer therapies, but what can we do?”  

Here’s something you can do: How about adopting the HIV model? Merck, Johnson & Johnson, Gilead and Viiv (formerly Glasgow Smith Kline) and other pharma took on HIV as a mission. Though there is still no cure, people living with HIV are thriving and living long lives. HIV is no longer a death sentence because of pharmaceutical efforts. Approximately 1.1 million people in the U.S. are living with HIV today.

So I am challenging my pharmaceutical partners to start a movement! Take on black breast cancer as a specific disease state, not just breast cancer, but black breast cancer. 

There are approximately 2.8 million black women with breast cancer in this country. Let’s focus research efforts on black women specifically to comprehend our physiology clearly. Make the commitment to understanding what makes breast cancer different for black women. I am not a scientist, and I know that I may be oversimplifying a very complicated illness, but my grandmother always told me, “If you don’t ask, you don’t get.”  

So pharmaceutical companies, are you up to the challenge? Are you willing to tackle all aspects of this disease state relative to black women? 

What makes black breast cancer a different disease? Let me break some real issues for you about what differentiates black breast cancer from breast cancers in other women: 

Black women are stressed out. Let’s understand fully the impact of stress from the social determinants of health, stress from being the main breadwinners for our families, stress from being single moms (77.3 percent of black moms are going it alone), stress from our Superwoman, save the world, take care of everyone psyche.“Stress has a profound impact on how your body’s systems function … stress makes your body more hospitable to cancer,” said Lorenzo Cohen, Ph.D., professor of general oncology and behavioral science and director of the Integrative Medicine Program at MD Anderson, 

“Chronic stress also can help cancer grow and spread in a number of ways,” says Anil K. Sood, M.D., professor of gynecologic oncology and reproductive medicine at MD Anderson.  A report published in the Journal of Psychosomatic Research by scientists from the University of Rochester Medical Center and Stanford University School of Medicine, identified that “extended periods of stress and trauma … may interfere with the body’s ability to fight off cancer progression … and potentially make the body more susceptible to recurrence of cancer.”

Let’s look at genetics, genomics and biomarkers. What role do they play in black breast cancer? In my personal experience as a triple negative breast cancer survivor, I don’t have any known genetic mutations, but is there something there that hasn’t been looked at, evaluated and a labeled yet? Is there some science we are missing with this testing, because we frankly don’t have enough data on black women? A recent survey conducted by Sisters Network Inc. identified that among African American survivors, there is a huge knowledge gap around genomic testing, and it is not being readily offered to black women by their health professionals.

• 61 percent had never heard of genomic testing.
• 83 percent were not offered genomic testing by their health professional.
• Those who were offered genomic testing (17 percent) did get the testing done.
• For perspective, 70 percent were offered genetic testing by their health professional. Seventy-six percent  had genetic testing done, demonstrating that 6 percent sought out the testing themselves despite it not being offered by their physician. Of those tested, 11 percent have a breast cancer gene.

Let’s research obesity and its potential causal factors. According to the Centers for Disease Control and Prevention, 82 percent of black women are overweight or obese. What role does diet and exercise play, and not just any diet, a black woman’s diet and level of exercise?

Let’s look at life stage and age. What’s going on the lives and bodies of black women younger than age 35 that would make them more susceptible to breast cancer?

Let’s study the quality of care for black women. Relative to breast cancer incidence, treatment and mortality is inferior. Where are the disconnects? Where are we failing black women? The National Academy of Medicine released a report documenting that “racial and ethnic minorities receive lower-quality health care than white people, even when insurance status, income, age and severity of conditions are comparable.” It concluded by describing an “uncomfortable reality”: “Some people in the United States were more likely to die from cancer, heart disease and diabetes simply because of their race or ethnicity, not just because they lack access to health care.”

Let’s understand the real factors that drive us to being diagnosed at later stages. According to the American Cancer Society, only 54 percent of breast cancers in black women are diagnosed at a local stage, compared to 64 percent in white women.

Triple-negative breast cancer remains a force to be reckoned with for us. Black women have 2.3 times higher odds of being diagnosed with triple-negative breast cancer. Among women who were diagnosed with breast cancer, those diagnosed at late stages were 69 percent more likely to have triple-negative cancer than other types. Why are our incidence and mortality numbers so high? 

African American participation in clinical trials is extremely insufficient. We are reluctant to engage in clinical trials and may refuse treatment as a result of our own race-related experiences. According to U.S. Census data, African Americans represent 13.4 percent of the U.S. population, yet the FDA reports this population makes up only 5 percent of clinical trial participants.

Let’s get real about the actual science of developing and testing drugs for black breast cancer look like Instead of letting the tail wag the dog, with black women being a small percentage of clinical trial research, make the research about black women. Conduct studies with just black women.  

According to Farid Vij, vice president of Corporate Development for Ciitizen (whose mission is to provide patients with control of their comprehensive health information), “Data is what will determine which patients are eligible for which trials, and data will be the driving force behind any research for new drugs and therapeutics. This is how we move the needle. Research for patients, by patients.”  

Let’s change the vocabulary for clinical trials so black women feel like research is safe and can be trusted. Frankly the words “clinical trials” are disturbing. The word “clinical” sounds like mice in a petrie dish, and the word “trials” sounds like failure. Most black women I talk to believe “placebo” means “I’m going to get the drug that doesn’t work.” They don’t understand the basics of what a clinical trial is and how they work, so they have minimal knowledge of what standard of care is.

Black women should not be dying of breast cancer at the levels we are. The industry needs to hunker down and focus specifically on black breast cancer. It is obviously a disease state unto itself, and we are now demanding attention.

Karen Eubanks Jackson, founder and CEO of Sisters Network^® Inc., says, “In our 25 years of fighting this fight, I have never seen enough focus given to black women and breast cancer. We fight a different fight that deserves committed research that matches the devastation we face.”

My awesome physician and sister friend, Regina Hampton, M.D., president of Doctors Community Hospital and co-founder and chief medical officer for Breast Care for Washington, D.C., says, “We need to look at these statistics and sound the alarm. Black women need access, trials and answers to figure out why there is not more progress in breast cancer statistics. We need to find innovative ways to make clinical trials available to this community that has deep mistrust in research.”

Pharma, are you with us? Are you willing to step up to this challenge? What’s stopping you from joining us in this movement to take on black breast cancer?

Let’s save some lives!

—Ricki Fairley

The post Wake Up, Pharma! Let’s Save Some Lives! appeared first on Black Health Matters.

In a study that included 15,171 black, Mexican American and white adults, researchers found that nearly 31 percent of black young adults had high blood pressure, also known as hypertension. It was the highest rate among the three groups studied.

“Young adults are often left out of cardiovascular disease studies,” said Dr. Vibhu Parcha, a clinical research fellow at the University of Alabama in Birmingham. “But to prevent heart disease and the racial disparities we see in older adults, we need to start looking at younger populations.”

Parcha presented the preliminary study at the American Heart Association’s Scientific Sessions conference in Philadelphia last fall.

Many adults with high blood pressure remain undiagnosed, while others who have been diagnosed do not have their disease properly controlled.

“When young adults have high blood pressure that is not controlled, they begin accumulating cardiovascular risk at a very young age,” said Dr. Cheryl Himmelfarb, professor and vice dean for research at Johns Hopkins School of Nursing in Baltimore. This, in turn, puts them at risk for having a heart attack or stroke at an early age, she said.

Parcha and his colleagues also studied changes over time in young adults’ awareness, treatment and control of high blood pressure.

“We found that black young adults have higher awareness and higher treatment rates than the other groups,” Parcha said. “But control rates of their disease are poorer than what is seen in middle-aged and older adults.”

Social factors and biology might both play a part in these disparities.

Previous studies have found high blood pressure is more common among black adults than adults of other races. The new study sheds light on how early this disparity begins.

“We need to understand the social and economic determinants that influence high blood pressure care behaviors,” said Himmelfarb, who was not involved with the study.

“We also need to ensure health care providers understand that these disparities exist so that they are screening for and effectively managing high blood pressure in young adults who they might otherwise see as healthy.”

Risk factors for high blood pressure include not getting enough exercise, an unhealthy diet, being overweight or obese, drinking too much alcohol, high cholesterol, smoking and diabetes.

“Hopefully this study will drive us to allocate resources to research young adults and lifestyle modification interventions tailored to meet the needs of this very high-risk population,” Himmelfarb said.

From American Heart Association News

The post High Blood Pressure Common Among Black Young Adults appeared first on Black Health Matters.

Black women experience the accelerated decline earlier than white women do, researchers say.

The new analysis, which comes from the largest and longest running study of women’s health in midlife, the Study of Women’s Health Across the Nation, adds to growing evidence that menopause is a critical time for changes in cardiovascular health, researchers say.

The findings underscore the importance of women and their doctors focusing on heart health during the menopausal transition.

“Midlife is not just a period where women have hot flashes and experience other menopausal symptoms,” says Samar R. El Khoudary, associate professor of epidemiology at the University of Pittsburgh Graduate School of Public Health and senior author of the paper in Arteriosclerosis, Thrombosis, and Vascular Biology.

“It’s a time when their cardiovascular disease risk is increasing as we see significant changes in multiple clinical measures of their physical health.”

El Khoudary and her team used a subset of data from SWAN Heart, an ancillary study that enrolled women from Pittsburgh and Chicago between 2001 and 2003 and included two examinations of early markers of cardiovascular health over time. Ultimately, the study included 339 women, 36 percent black and the rest white.

The study focused on how arterial stiffness changes as women transition through menopause. Arterial stiffness refers to the elasticity of arteries and is measured by looking at how fast blood flows through arteries. Stiffer arteries can lead to dysfunction in how well the heart pumps and moves blood, and damage to the heart, kidneys and other organs.

The researchers tracked the women through SWAN for up to 12.5 years, or until they reached menopause, allowing them to confidently anchor the arterial stiffness measure to the menopausal transition.

On average, as women went through menopause, their arterial stiffness increased by about .9 percent up to one year before their last menstrual period to about 7.5 percent within one year before and after their last period, a considerable acceleration. The black women in the study experienced greater increases in arterial stiffness earlier in the transition than white women, more than a year before menopause. The findings held after adjusting for numerous factors that could affect heart health, including waist circumference, blood pressure, lipids, smoking status, physical activity levels and financial stress.

“SWAN is a unique source of data on changes in women’s health over several decades, and this is the latest in a long line of research by our team and others that indicates the menopausal transition is a very important time for heart health,” says lead author Saad Samargandy, a PhD student at Pitt Public Health. “While there are limitations to our study, including that a sizable minority of the women had their arterial stiffness measured at only one time point, we were still able to see that major changes to cardiovascular disease risk happen around menopause.”

This study follows several others that link the menopausal transition to the accumulation of heart fat, changes in cholesterol, inflammation, and coronary artery calcification, among other heart disease risk factors, the researchers say.

“Our study is not able to tell us why we’re seeing these changes during the menopausal transition,” El Khoudary says. “But we speculate that the dramatic hormonal changes accompanying menopause might play a role by increasing inflammation and affecting vascular fat deposition, a hypothesis that we would like to test in future studies.”

Researchers will need to conduct clinical trials to test if lifestyle interventions, such as changes to diet or physical activity; medications, such as statins or hormone replacement therapy; or even increased screening and tracking of measures of heart health could benefit women as they go through menopause, Khoudary says.

“But we can say, right now, that women should be made aware that their cardiovascular health is likely to worsen as they go through menopause. Therefore, frequent monitoring of cardiovascular risk factors may be prudent, particularly in black women who are at even greater risk earlier in the menopausal transition.”

The post Menopause Worsens Heart Disease Risk appeared first on Black Health Matters.

Believe it or not, that’s actually good news. “The number of new cases of lung cancer continues to decrease. There’s also a decreased number of deaths due to lung cancer,” said Yewande Odeyemi, M.D., a Rochester, Minnesota, pulmonologist at a Precision Oncology event in Atlanta last month.

She credits the lower incidence of and death rates from lung cancer to folks kicking their smoking habit coupled with earlier detection of the disease. “We are able to detect lung cancer at a very early stage and offer treatment to patients,” she said.

Alas, health disparities still exist. “Black men are more likely to develop and die from lung cancer,” Dr. Odeyemi said.

In fact, black men are 15 percent to 37 percent more likely to develop lung cancer than their white counterparts. The 5-year survival rate for our men is about 15 percent, compared to 12 percent in white men. This is due in part, Dr. Odeyemi said, to several factors:

• Black men are usually diagnosed with late stage lung cancer.
• They are less likely to receive the recommended course of treatment.
• The are more likely to refuse treatment.

To change these statistics, prevention is the key. This starts with smoking prevention and cessation, something at which black folks are excelling. “I’ve been very impressed with the smoking cessation among the black community,” Dr. Odeyemi told the audience in Atlanta. “Unfortunately, a lot of evidence and research shows black men are more reluctant to seek preventive care because of fear of the disease.”

When we can’t prevent a lung cancer diagnosis, early detection is critical. This includes lung cancer screening, which enables doctors to pick up lung cancer at a very early stage and design an individualized treatment plan each patient. Treatment in 2020 may include surgery, radiation, chemotherapy, targeted therapy or immunotherapy.

“In the last decade, there have been so many clinical trials,” Dr. Odeyemi said. “Now we have very good treatment for lung cancer. We are able to target lung cancer in a unique way, including medications to help the immune system fight against this cancer.”

In fact, new medications are being created regularly. “The NIH in the last two decades has increased funding for lung cancer. There are over 1,000 clinical trials available for just lung cancer,” she said.

So it goes without saying that with such dismal survival numbers, it’s likely we have huge health disparities in access to centers that offer these new therapies. “We’ve found that black patients were only 78 percent as likely as their white counterparts to receive treatment,” she said. “Our research also shows black men are so underrepresented in lung cancer clinical trials they constitute less than 4 percent of all patients enrolled in multiple trials.

What can we do to improve disparities? “Increase awareness,” Dr. Odeyemi said. That means:

• Inform more patients about lung cancer screening.
• Continue to talk about smoking cessation with our family members. “Second-hand exposure does matter,” she said. “It’s not about you smoking, but those who smoke around you.”
• Increase awareness about advanced treatment options, including targeted therapy and immunotherapy
• Increase awareness about clinical trial participation so we can have medications that consider the uniqueness of black men. 

 “The new therapies—immune and targeted—should be approved with the consideration of the uniqueness of black men. Without this consideration,” she said, “health disparities will continue.”

The post Diversity in Clinical Trials Reduces Health Disparities appeared first on Black Health Matters.

 The topics of the joint program from Black Health Matters and Kappa Alpha Psi were prostate cancer, lung cancer, clinical trials and stigma in the African American community, and Rivers, director of the Cancer Health Equity Institute at Morehouse School of Medicine, pulled no punches when it came to challenging health disparities.

His institution, he said, has done a great job of studying what drives disparities and understanding why African Americans are disproportionally impacted by almost every chronic condition in this country.

“What is so different about how we interact with the community versus our white counterparts to produce such adverse health outcomes?” he asked. “Is it the construction of our community? Is it the policy that governs our community? Is it our individual behaviors or even our genetics that increases our risk? Is it an access issue? Is it fear? Or is it some other factors that are causing these sort of adverse outcomes we’re seeing? I find a lot of the disparities we talk about unacceptable.”

That’s why Rivers has devoted his career to studying them.

Clinically, inequalities in care are attributable to access to clinical care, as well as to quality of care received, he explained. “We know that quality is measured based on whether an individual receives guideline-recommended care and whether they are treated at facilities that have the experience and infrastructure to care for cancer patients.”

Even at facilities with a robust infrastructure, like Morehouse School of Medicine, researchers still see only a small percentage of minority patients.

Precision medicine, a form of medicine that uses information about a person’s genes, proteins and environment to prevent diagnose and treat disease, has transformed cancer for many patients, Rivers said. “It has also brought attention to a lack of racial and ethnic diversity in human genomic studies. Translation: While the federal government is spending all this money on advancing precision medicine, not all individuals have benefitted from those advances.”

This is in spite of the National Institutes of Health Revitalization Act of 1993, which mandated women and members of minority groups be included in all NIH-supported research. Nearly 30 years after the act passed, minorities are still underrepresented. “Especially those who are bearing a disproportionate burden of disease, such as African Americans,” Rivers said.

Case in point: African Americans make up 14 percent of the U.S. population. African American men are more than twice as likely to die from prostate cancer. But our men made up less than 10 percent of participants in clinical trials that led to recent FDA approvals of two cancer drugs for prostate cancer.

“Will African Americans be responsive to the therapies if they weren’t involved in the research? How can we have confidence in the therapeutics that emerge as a result of these clinical trials if we’re not included?” he asked. “We have to come up with real strategies that work to ensure cancer therapeutics are safe and effective for everyone who will use them. That’s the role of clinical trials. It’s vital participants in clinical trials represent the entire population who may use them.”

One strategy is to make sure clinical trial cohorts recruit from southern states, where most African Americans live. We also need to have the confidence and health literacy to engage with our health care providers. 

Ask “‘Should I be screened annually or every six months? Is my provider tracking my PSA velocity? How is my PSA trending over time? I’m a former smoker; will this affect my therapy. I stopped smoking cigarettes but now I’m smoking marijuana.’ These are the questions you have to ask your health care provider to understand your risk and the strategy you need,” Rivers said. “It’s health disparities versus health equity. Giving people what they need, when they need it in the right amount—that’s health equity.”

The post Precision Medicine Doesn’t Trickle Down appeared first on Black Health Matters.

Panelists at a workshop, “Addressing Advocacy at the Bench: Implementing Change,” held last fall at The 12^th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved described complex and sometimes contentious negotiations between the scientists conducting clinical trials and patients from racial and ethnic minority groups.

Research has long shown that populations at risk for cancer health disparities are less likely than other groups to participate in research studies. In the past few years, the U.S. Food and Drug Administration has provided guidance on how to recruit participants from underserved groups, and the agency began publishing Drug Trials Snapshots, clearly written, graphically presented information on the demographic makeup of clinical trials.

Most researchers know they should recruit patients from minority groups. But when approaching patients, they sometimes fail to establish trust, or to adequately convey that patients are likely to benefit from their participation, panelists said.

“Many of us come from populations that have experienced research in a negative form,” explained Phyllis Pettit Nassi, associate director of Research & Science, Special Populations, at the Huntsman Cancer Institute in Salt Lake City. “There has been unethical use of data that come from our people. Our populations are fearful, and we have to correct misinformation.”

Nassi, who was one of several cochairs of the disparities conference, works with 40 Native American tribes in five states, and she said she has seen many efforts to recruit them to a research study fail due to misunderstandings. For example, a researcher may visit a tribal land, and may establish some friendly relationships, but if the Native Americans have never left the reservation or visited the researcher’s clinic, he may not truly understand the value of the researcher’s work.

Jamie Brewer, M.D., of the FDA Office of Oncology and Hematology, pointed out that clinical trials that enroll mostly white patients ultimately only determine a drug’s safety and efficacy in white patients.

“Drug development has been very robust lately, but we are missing out on the aspect of whether a drug will be more beneficial or less beneficial to various racial and ethnic groups,” she explained.

The panelists said that researchers and patients alike would benefit from efforts to continuously connect with minority populations, so that trust and familiarity might grow organically. Lola Fashoyin-Aje, M.D., a medical officer with the FDA, said the agency has taken steps in this direction, seeking out patients to advise them on many issues surrounding clinical trial participation, including financial toxicity and ethical concerns.

“We have to get out of this mentality that we just have to get the data,” said Nynikka Palmer, assistant professor at the University of California San Francisco. “We have to go to the communities, ask them what they need, and meet them along the way. We should start by building relationships and building trust.

Brewer agreed. “The relationship needs to be there, and we should work to develop it early on in a patient’s care,” she said. “We try to build the relationship when we need patients for studies, but we should get to know them earlier, without demanding anything from them.”

How can the patients help?

At Candace Henley’s lowest point during her treatment for young-onset colorectal cancer, she promised herself that if she lived, she would devote herself to advocacy.

Today, she is a proud and passionate advocate, having founded The Blue Hat Foundation to raise awareness of colorectal cancer in minority and medically underserved communities. She also works to spread awareness of the crushing burden of medical costs for cancer patients. In the wake of her treatment, she lost her home and her job. She applied for federal Social Security Disability Insurance, but her application was denied.

“At that time, there were no patient navigators; there was no one to tell me that I could have appealed it,” she said. “I didn’t know I could fight.”

She said patients can improve their chances of being heard and respected if they learn all they can about their cancer.

“Patients need to understand their disease,” she said. “It’s great to have passion, but make sure that with your passion, you are educated, so that when you are having a conversation with a medical professional, they will trust you just as you are being asked to trust them.”

From the American Association for Cancer Research

The post How Can We Recruit Minorities Into Cancer Clinical Trials? appeared first on Black Health Matters.

​We believe when people are empowered patients who act as experts in their own health care, they better meet their wellness goals. Studies show being proactive about one’s own health not only results in better health care; it also strengthens the body’s natural self-repair mechanisms and helps fend off illness. ​

Through health education and engagement programs, Black Health Matters, the leading syndicator of original content on African American health, is committed to teaching African Americans how to take control of their health into their own hands. ​

We’re launching ProActive Health for African Americans with the 4th Black Health Matters Summit because we are uniquely qualified to do so. 

The 4th Black Health Matters Summit will showcase world-class health leaders who engage with the community in intimate roundtables and workshops on the latest trends and innovation in African American health. Topics include breast cancer, clinical trials, colon cancer, diabetes, heart disease, hereditary hATTR amyloidosis, HIV, lung cancer, mental health, prostate cancer, sickle cell disease and more. Registrants can also take advantage of free health screenings.

The post ProActive Health: 4th Black Health Matters Summit appeared first on Black Health Matters.

Delays in surgery for ductal carcinoma in situ breast cancer lead to a higher risk of invasive ductal carcinoma and a slightly lower survival rate, the study found.

“For each month of delay, there was well under a 1 percent difference in survival,” said study author Richard Bleicher, professor of surgical oncology at Fox Chase Cancer Center, in Philadelphia. “But for each month of delay, there was an approximate 1 percent increase in the finding of invasive cancer.”

DCIS, which occurs when abnormal cells form in the milk duct of the breast, is the earliest stage of breast cancer. When cancerous cells spread beyond the milk duct, it becomes invasive ductal carcinoma.

Standard treatment for DCIS is surgery, radiotherapy and endocrine therapy. 

But research suggests some DCIS may never progress to invasive disease. Clinical trials are currently underway to determine whether DCIS can be observed instead of surgically removed.

This study “suggests delays in operative management of DCIS are associated with invasion and slightly worse short-term outcomes,” Bleicher said. “Since observation represents infinite delay, it suggests observation should not yet be pursued outside of a clinical trial in patients who will tolerate excision.”

The study included more than 140,600 women diagnosed between 2004 and 2014. Survival was compared with five time intervals in delays to have surgery: less than 30 days, 31-60 days, 61-90 days, 91-120 days, or 121-365 days.

Overall survival was nearly 96 percent, with a median time from diagnosis to surgery of 38 days. But each increase in diagnosis-to-surgery interval was associated with a 7.4% increase in the risk of death.

“The survival difference with a delay is small,” Bleicher said in a release. “While it’s not an emergency to get treated immediately, delays do have an effect and long delays should be avoided.”

The post Early Breast Cancer: Should You Have Surgery? appeared first on Black Health Matters.

July 25, 2019 – Black Health Matters, the leading integrated health and chronic disease management platform, and Kappa Alpha Psi Fraternity, Inc., the preeminent African American fraternity, will partner to launch Precision Oncology, a prostate cancer and clinical trial education initiative at its 84th Grand Chapter meeting on July 31, 2019, from 10:00am to 12:00pm in room 108B of the Philadelphia Convention Center. This program will be implemented in partnership with the Sidney Kimmel Cancer Center at Jefferson Health.  The goal of Precision Oncology is to educate African American men about the prevalence of prostate cancer while providing strategies for managing the disease.  There will be a focus on the importance of clinical trial participation as a way to increase therapeutic options that are effective in African American patients. Genentech and Janssen Research & Development, LLC, part of the Pharmaceutical Companies of Johnson & Johnson and  are stakeholders of this educational initiative.  This program is free and open to the public.

Prostate cancer can almost be considered an epidemic among black men. They have a 70% greater incidence of[1] prostate cancer and a two-fold greater risk of dying from prostate cancer versus white males. For too long, the collective health of Black men has not been a priority.  Black Health Matters and Kappa Alpha Psi Fraternity, Inc. are committed to helping African American men live longer and healthier lives through education and advocacy.

Precision Oncology is a Black Health Matters Summit, a change-agent, advancing participatory medicine through the creation of a medical symposium tailored to meet the needs of African American patients, caregivers and gatekeepers interested in building capacity for their community. With expertise derived from years of serving as a definitive resource on health, Black Health Matters will work with Kappa Alpha Psi Fraternity, Inc. over the next two years to replicate this program in key markets where the need is the greatest.

Through a series of presentations from experts Precision Oncology will address disparities in access to healthcare, strategies to improve health holistically while increasing health literacy, and decreasing stigma of help-seeking behavior within our community. The confirmed presenters are nationally recognized experts. The presenters include, Dr. Shinta Cheng, Executive Medical Director, Clinical Oncology, Janssen,  Dr.   Gomella, Clinical Director, Sidney Kimmel Cancer Center at Jefferson Health and .Janice Hall Dean, President, National Silhouettes of Kappa Alpha Psi Fraternity, Inc.  Two members of Kappa Alpha Psi Fraternity, Inc.  will present, Dr. Mark T. Fleming, President, Virginia Oncology Associates and  Dr. Dr. Kevin Ahmaad Jenkins, Vice Provost, Post Doctoral Fellow, University of Pennsylvania. The Master of Ceremonies is Dr. Edward R. Scott, II, Kappa Alpha Psi’s Health & Wellness Committee National Chairman. Erin Coleman, Emmy Award winning journalist who currently anchors NBC10’s 5 o’clock evening newscast will moderate the program.

About Black Health Matters

Black Health Matters, (www.blackhealthmatters.com) is a digital health communications and patient event engagement firm that was founded in 2012. Black Health Matters (BHM) is an award-winning, premier web site that empowers thousands each week with information on the management of chronic disease.

About Kappa Alpha Psi

Kappa Alpha Psi is the nation’s leading fraternity, highly regarded for a wide variety of programs implemented annually that benefit African-American men and their communities. Founded in 1911, the college fraternity is now comprised of 700 plus Undergraduate and Alumni Chapters on major campuses and in cities throughout the world and has more than 150,000 members worldwide.

[1] https://www.cancer.org/cancer/prostate-cancer/about/key-statistics.html

The post Black Health Matters and Kappa Alpha Psi Fraternity, Inc., Partner to Launch PRECISION ONCOLOGY Initiative appeared first on Black Health Matters.

Many people experience low-back pain over their lifetime. For those who don’t recover quickly, the discomfort can become chronic, lasting for months or even years.

NIH-funded researchers have been looking for new ways to treat long-lasting low-back pain. A new study shows that yoga may help relieve moderate to severe low-back pain. The research team recruited 320 people with chronic low-back pain from diverse backgrounds and underserved communities. More than half of the study’s participants were non-Hispanic black and earned less than $30,000 per year.

The participants were randomly assigned to three groups. The first group took 12 weekly yoga classes designed for people with low-back pain. The second group had 15 physical therapy sessions over 12 weeks. These included exercises to strengthen back and core muscles. The third group received a self-help book and newsletters to learn how to deal with back pain.

The results suggested that a structured yoga class may be an option for treating chronic low-back pain. All three groups reported improvement in physical function and pain reduction. However, people in the yoga and physical therapy treatment groups were more likely than those in the education-only group to stop taking pain relievers after a year.

“Chronic low-back pain disproportionately impacts those who are economically disadvantaged,” says research team leader Dr. Robert Saper of the Boston University School of Medicine and Boston Medical Center. “Therefore, we feel that it was important to test whether the yoga would be received well by an underserved population as well as being effective.”

The post Can Yoga Help Back Pain? appeared first on Black Health Matters.

First diagnosed with stage two of the lethal cancer in 2013, Jones had extensive surgery to remove part of her pancreas, her gallbladder and 18 inches of her small intestines, and then went into remission. Her reprieve was short-lived, however; the cancer roared back, at stage four, with tumors spreading to her lungs, liver and lymph nodes.

This isn’t unusual, according to Antonio Baines, Ph.D., a cancer pharmacologist at North Carolina Central University. Pancreatic cancer, the third-leading cause of all cancer deaths in the United States “is very deadly because we don’t have any early detection methods. With breast cancer, we have mammograms to detect some types of breast cancer. A lot of times when pancreatic cancer is found, it has already metastasized to other parts of the body,” he said in an interview with Black Health Matters just hours before Jones succumbed to the disease. 

Diagnosis is made even more difficult because of a lack of symptoms. Jaundice, extreme itching and weight loss led Jones to see her doctor and to a speedy diagnosis, but according to Baines, pancreatic cancer “is usually found by accident.” That’s because most of the symptoms—loss of appetite, losing weight, some nausea or vomiting—aren’t specific to pancreatic cancer.

Science hasn’t made much progress on the treatment front, either. “We don’t have any good treatments for pancreatic cancer,” Baines said. “Only about 10 percent of patients are eligible for surgery, and unfortunately, in many cases, you have to remove more than just the pancreas. It’s a very invasive surgery, sometimes calling for removal of a portion of the stomach and a portion of the small intestines, too.”

And largely ineffective chemotherapy—most of which may prolong life only six months to a year—adds to the challenges presented by this form of cancer. This triple cocktail of late detection, few symptoms and poor treatment methods has the five-year survival rate of pancreatic cancer hovering around 8 percent, placing it among the lowest survival rates of all cancers.

This is where Baines comes in. In conjunction with colleagues at University of North Carolina-Chapel Hill, Baines has focused his career on fighting pancreatic cancer—finding drugs that will slow down cancer cell growth or increase cancer cell death.

“Progress has been made,” he said. “The Pancreatic Cancer Action Network—PanCAN—has brought a lot of attention to this disease. They are a strong advocacy group. But a lot more needs to be done for research funding and to bring people to clinical trials.”

This is especially true for African Americans, like Jones, who have a 50 percent to 90 percent higher likelihood of being diagnosed with pancreatic cancer than their white counterparts, but who are rarely part of clinical trials.

“It’s unfortunate,” Baines said, “because we’re finding out with health disparities that cancer is different with different ethnicities. Clinical trials help push the field and help find better treatment. If a clinical trial is not diverse, the benefits you see may not be for everybody.”

–Kendra Lee

The post Fighting Pancreatic Cancer appeared first on Black Health Matters.

• Have you recently been diagnosed with FSGS? Click here to learn more about an FSGS clinical trial for which you may be a candidate.
• Do you have IgA Nephropathy and are interested in participating in a clinical trial? To see if you qualify, click here.
• The REACT Study is recruiting adults with type 2 diabetes and diabetic kidney disease. Click here to see if you qualify.
• Are you planning on getting a transplant plant from a living donor? Learn more about a clinical trial that you might be eligible to participate in.
• For people with Diabetic Kidney Disease, click here to see if you are eligible to participate in these clinical trials.

For more information about a clinical trial for a rare kidney disease, called FSGS, that affects African Americans, visit www.fsgsduplex.com.

The post How Can I Find a Clinical Trial? appeared first on Black Health Matters.

Cancer affects everyone, no matter their background or ethnicity.
Yet cancer clinical trials—research studies designed to test the safety and effectiveness of potential new treatments—don’t always represent the full scope of the population.
That’s because there is a shortage of diverse clinical trial participants, a deficit that can affect efforts to treat and cure the disease in all patients, no matter their gender, race or ethnicity.
“When we study certain conditions, certain cancers, and we only use one population, we find out a lot about that population,” said John M. Carethers, M.D., chair of internal medicine at Michigan Medicine, “but it says nothing about other populations.”
For clinical trials to be most effective, diversity is key. Certain types of cancer are more prevalent in black or Hispanic Americans; some cancers behave differently in younger versus older people.
Increasing the number of people involved means researchers could get a clearer handle on how best to help everyone.
Some clinical trials involve comparing two types of treatment or trying a new use for a drug already approved by the Food and Drug Administration for a different cancer. Others involve drugs that are being administered to people for the first time after rigorous laboratory testing.
Each method can help researchers determine if a medication works more effectively than the current standard treatments.
Still, “we won’t know until we compare it head-to-head,” said Lori Pierce, M.D., a Michigan Medicine radiation oncologist.
She and Carethers know that most patients might have questions about clinical trials.
They also acknowledge that minorities could have particular concerns in light of the Tuskegee syphilis experiment, a federally funded—and highly unethical—study that for 40 years only monitored hundreds of black men with syphilis despite the availability of treatment.
Such wrongdoing, the clinicians stress, is well in the past: “Everyone wants to be cured of their disease,” Dr. Pierce said. “Clinical trials give everyone equal opportunity to do so.”
From Michigan Health

The post A Missing Link in Cancer Clinical Trials appeared first on Black Health Matters.

When I was diagnosed with prostate cancer in the year 2000 I had already lost my father and both grandfathers to the disease. This made me the third generation in my family to face prostate cancer.  However, it was some years later that I understood the important role of genetics in a man’s prostate health.
Researchers are working to pinpoint the exact genetic reasons that African American men are diagnosed with a 60% higher rate of prostate cancer and die from the disease at a 130% higher rate than white men. While this work is being pursued new prostate cancer treatments are continuing to be developed and approved to treat the disease.
Each of these new treatments is approved based on a clinical trial study. More and more doctors are focused on using genetic profiles to determine which treatment is best for individual patients. This is referred to as personalized or precision medicine. The problem is that African American men have not been participating in clinical trials in large enough numbers for researchers to know which treatments may or may not work best for us.

PHEN’s Clinical Trials Rally is aimed at raising the level of clinical trials education and awareness and increasing African American participation in prostate cancer clinical trials. We cannot be left behind with new treatments if we are going to eliminate the prostate cancer racial disparity.
The decision on whether a man should participate in a prostate cancer clinical trial has to be made between him and his doctor. However, we trust that our clinical trials rally information will help you make better informed decisions with your doctors. There are benefits from clinical trials that you may realize while you are on your prostate cancer journey today, and possible benefits for future generations within your family.
My best to you in our fight against prostate cancer.
Tom Farrington
PHEN Founder and President
Written by PHEN.

The post African American Clinical Trials Participation appeared first on Black Health Matters.

• It provides another treatment option.  You will have access to new innovative treatments (at minimal to now cost) that are not available to people outside of the trial.

• You receive expert medical care that will provide close monitoring of your condition and any changes.

• If the treatment being studied is more effective than the standard treatment, you may be the first to receive this benefit.

• You will help doctors develop new treatments and determine how well they work for all black men.

Written by PHEN.

The post Understanding the Possible Benefits for Patients When Participating in a Clinical Trial appeared first on Black Health Matters.

Q&A with Dr. Dara Richardson-Heron, Chief Engagement Officer, All of Us Research Program

Q: Can you please describe your role at the All of Us Research Program?

I was an inaugural member of the All of Us Research Program Advisory Panel, so it felt like a natural transition to step into my current role as chief engagement officer. All of Us has a goal to enroll and retain one million or more volunteers in this landmark effort to advance innovative health research, which may lead to more precise treatments and prevention strategies. My primary objective is to forge partnerships with research participants, health care professionals, and national and community-based organizations to raise awareness of the program and engage members, with a special focus on populations that have been historically underrepresented in research. Engaging and empowering people is something about which I am extremely passionate.

Q: Why is it so important to include communities that have historically been underrepresented in research?

Most studies and clinical trials have been conducted with the average white male participant. All of Us aims to be different. We want our program participants to reflect the rich diversity of the United States. We know that a truly effective pool of participants won’t all physically look the same; it will include people from all different backgrounds and walks of life. The more data we gather, the more we’ll know about what makes people unique, which may, in turn, pave the way for more customized health care approaches.
Minorities make up 38 percent of the US population. This number is expected to rise to more than 50 percent in the coming years. And now think about this statistic: the African American population is the second largest ethnic/racial minority group in the U.S., making up 13.3 percent of the total U.S. population (46.3 million people), yet African Americans contribute to only five percent of clinical trials nationwide. This is despite the fact that African Americans, for decades, continue to have the highest incidence, prevalence, and mortality rates from chronic and often preventable diseases such as heart disease, diabetes, obesity, hypertension, mental health, and HIV/AIDS.
We do not fully understand why these disease rates are so high in many underrepresented communities, and part of why we don’t understand is because we don’t have enough representation of all individuals in the research that will lead us to answers.

Q: The history of this field is not free of its mistakes. In fact, there have been some past transgressions in biomedical research and large-scale studies. What lessons were learned, and how will All of Us be different?

A: We recognize that many transgressions have occurred in research over the years, ranging from Henrietta Lacks to the Tuskegee Syphilis Study. These egregious abuses have understandably led to many groups, especially minority groups, being hesitant or skeptical when considering whether or not to share their medical information or participate in research.
While none of us can wave a magic wand to erase the past, our job is to genuinely, and with overwhelming respect and empathy, acknowledge the legitimacy, fear, concerns, and mistrust these unfortunate historic actions and realities instill in many of the communities we are attempting to engage.  We hope to make it abundantly clear – both in our words and our actions – that the All of Us Research Program is focused on authentically engaging participants in a way that respects their interests, values, and needs.
And most importantly, we must make it absolutely clear that our mission is to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment and care, not just for some us, but for all of us!
Excerpt from the Precision Medicine World Conference

The post Meet Dr. Dara Richardson-Heron, Chief Engagement Officer, All of Us Research Program appeared first on Black Health Matters.

The persistent lack of diversity among clinical trial participants, and the resulting lack of data on multi-ethnic patient bases, requires us to consider the implications of this situation before we can address possible solutions.
It may seem obvious, but it is worth stating: when segments of the population are not included in clinical trials at levels that do not meet statistical significance, it is impossible to determine if the therapy in question will work equally, better, or worse as for the population in which it is studied.
We simply don’t know these answers until the therapy has been on the market. Side effects, efficacy and safety become better appreciated and understood only after the therapy has been on the market for some time, given that FDA approvals allow for wider prescribing that is no longer limited to the population represented in the data. Even then, adverse event reporting is unwieldy and most likely does not fully capture how medications affect larger communities not represented in the data.
The article, Racial and Ethnic Differences in Response to Medicines: Towards Individualized Pharmaceutical Treatment, states, “Pharmacogenetic research in the past few decades has uncovered significant differences among racial and ethnic groups in the metabolism, clinical effectiveness, and side-effect profiles of many clinically important drugs.” While it is important to acknowledge these differences, they don’t become apparent often until these negative effects may have already caused damage.
The consequences could lead to poorer outcomes across several aspects, including poorly controlled symptoms, further disease progression, unwanted and dangerous side effects, more doctor visits, more time away from work, increased out of pocket costs, and additional hospital stays. Those are the calculable effects and don’t include the mental and emotional toll on patients and their families.
An example of the consequences of this persistent lack of data is the anti-HIV drug, efavirenz. It is metabolized more slowly among people of African descent. Since the numbers of African Americans in the study were too few to be able to discover this, the metabolism difference led to resistance issues for many people taking the drug. Had more data been collected at the outset, it is possible that this particular complication could have been avoided for many people.

Hypothetically Speaking

So, let’s take a hypothetical situation. Let’s suppose that U.S. Hispanics account for 25 percent of all diabetes patients in the country. That amounts to 7,500,000 people. Now, let’s say that there is a new drug, DiabetesControl (a fictional name), and roughly 1 percent – 2 percent of the U.S. clinical trial participants were Hispanics. If the trial included 2,000 people, at 2 percent (which would be consistent with current trends) only 40 Hispanics would have been included. This number does not meet statistical significance to tease out any pharmacokinetic or pharmacogenetic differences.
Now let’s look a little more closely at the U.S. Hispanic diabetes population. There is quite a bit of evidence showing that Hispanics with diabetes tend to be diagnosed at younger ages, yet with more advanced disease progression. A1C levels also tend to be higher at diagnosis than for their non-Hispanic counterparts.
Diabetes is a challenging condition to manage, with many variables that must be considered, but let’s suppose that DiabetesControl simply does not perform very well in Hispanics due to a metabolic issue that did not present itself for the vast majority of clinical trial participants, and therefore did not raise any red flags requiring special prescribing information in the label, nor did it prevent the drug’s approval.
Now, let’s suppose that of the 7.5 million Hispanics with diabetes, 10 percent (750,000) have been prescribed and are taking this new drug. Let’s say that 10 percent of this group (75,000) have all been hospitalized at least once for diabetes-related issues and let’s say 10 percent of this group (7,500) have been re-hospitalized several times within a year. Yet, since no one really knows that there is an issue with the drug, no one is looking for this to be a confounding factor in the health of these individuals.
Which bring us to the public health issue. Since I hope we can agree that the goal of treatment is to keep people as healthy as possible and out of the hospital, and that each hospitalization costs the whole health care system a great deal of money – we now have a growing problem with escalating costs, especially in light of the growing diabetes epidemic. In fact, according a recently published study, the American Diabetes Association reports that in 2017, diabetes care cost the U.S. health care system $327 billion, a 26 percent increase from 2012. This figure includes $90 billion in lost productivity.
These costs also included hospital care (30 percent), prescription medications to treat complications (30 percent), prescription medications to treat diabetes (15 percent), and physician office visits (13 percent).

The Widespread Paucity of Data

So now let’s look at some more numbers. Let’s say that of $327 billion annual health care spend, $87.75 billion is spent among Hispanic diabetes patients (which represents the hypothetical 25 percent Hispanic group). If 30 percent is for hospital care alone, then $24.525 billion is spent annually among this group. Using the above scenario, then $245.250 million might have been saved had the metabolic issue with DiabetesControl had been known. That might not seem like a lot of money, but remember, that is simply in hospital care and does not account for lost productivity, or the medications to manage the complications of the condition.
Moreover, what if there were data that supported a more effective medication that could have been used with this group and might have avoided the need for additional medications, and doctor visits? I wonder how many complications could have been avoided, to say nothing of the out-of-pocket costs and the health and well-being of these hypothetical patients had there been more information available.
We are using diabetes only as an example, but let’s remember that the clinical trial participation rate among all minorities in the U.S. ranges from approximately 1 percent – 5 percent and is consistent across almost all disease states. This level of participation, or more accurately, lack of participation, has remained constant over the decades since ethnicity data has been captured in clinical trial data.
Curiously, it is only until recently that the FDA has begun publicly posting the percentages of ethnicities represented in clinical trials. This helps in understanding the widespread paucity of data collected but does not address why this situation persists. While there are some historical reasons for the lack of participation among non-white communities, we must move beyond them and start doing things differently if we are going to make an impact in who is included in the science that should benefit everyone.

Taking the Trial to the Participants

Clinical trials are complicated. They are costly. They involve many stakeholders, including consumers, sponsors, health care systems, physicians, nurses, labs – the list is endless. Yet, there are three sectors we can discuss to change this persistent dynamic:
1) Clinical Trial Design
2) Investigator Training
3) Consumer Education
Let’s start with clinical trial design and the logistics of site location. I recognize that designing clinical trials is no easy task, however, implementing simple logistics that would make it easier for participants to join and remain in studies would not change the scientific parameters, but might very well increase participation rates for those who could benefit. Let’s face it, all stakeholders benefit when a trial is fully enrolled, when patients remain in the study and when data is representative of all groups who suffer from the condition.
What can we do? Well, imagine using existing physical infrastructure to conduct patient visits, such as drug stores where they have express clinics, or even the YMCA, which is in many communities across the country with easy neighborhood access. Since many clinical trials tend to be in cities where there are research universities, there is nothing to prevent those drugstore chains and universities from coming to an agreement to use those physical spaces for patient visits.
There are very good reasons why many clinical trials are conducted at large research institutions, including the rigorous and excellent work they do. However, most people don’t live near research institutions. Even if they do, they often can’t take time off from work to go to clinical trial visits. So why not make clinic hours more convenient? This is where using sites like drug stores, which are open later and on weekends, is a good option.
Perhaps sponsors and investigators could build protocols that would facilitate clinical trial staff scheduling study visits two or three days a week during hours that accommodate participants’ work schedules at these convenient locations where people are already comfortable going and that are closer to their homes and work places. Granted, depending on the trial, there may be certain visits that require a participant to go to where the investigators are, but I imagine that much could be done by taking the trial to the participants instead of making the participants come the trial.

Understanding the Cultural Nuances

Before we look at some persistent myths about the perception of minority patients, let’s address an often overlooked factor. One of the reasons minorities do not take part in clinical trials is simply because they are not asked. Part of the reason they are not asked is because assumptions may be made about their willingness to participate based on their ethnicity, language spoken, and/or cultural background.
Yet, when patients trust their doctor, understand what clinical trials are and how they or their families might benefit, most are open to the discussion, and their ethnicity/language/culture is not a barrier.  Physicians and nurses may need more training to understand different cultural nuances that affect patients’ approach to health care, yet these relatively minor issues should not be a barrier to greater inclusion of trial participants. We need to and can encourage these health care professionals to have those conversations with their patients so that they appropriately ask patients to join or refer them to trials.
Finally, let’s look at how we can bring more understanding to consumers about clinical trials and the important role they play in science and drug development. This is where public health campaigns can make a big difference.
I remember as a young child the anti-smoking campaign in California. They were very effective and combined with legislation and continued initiatives to keep people smoke-free, they helped make California one of the states with a smoking rate 11.7 percent for adults, compared to the ~17 percent national average.
There have been public health campaigns for TB, spitting, hand-washing, tooth brushing, getting rid of flies, vaccines, and forest fire prevention (I still remember Smokey the Bear) – the list is long. We need a public health campaign for clinical trial participation. We cannot expect the sponsors of clinical trials to do this alone since the problem is bigger than any one pharmaceutical company or research university can address.
Given how much money is spent annually on health care, our nation’s health is at stake. Knowing that the population has changed from mostly Anglo to multi-cultural, we can no longer pretend that we can gather information from the same group and expect these new and often life-saving therapies to perform the same among all people.
If we continue doing nothing to change who is included in clinical trials, the disparities of health that already plague this nation will continue, will grow, and will increase costs beyond capacity. We have made great strides in health care and with concerted efforts across public and private institutions, we can create a more inclusive ecosystem where the art and science of clinical trials benefit the lives of all people.
(Lisa Valtierra is a nationally recognized expert in the field of diversity in clinical trials. Please share your comments to the article with her at lisa@valtiaraconsulting.com.)

The post Clinical Trials Advocate Lisa Valtierra shares Why the Lack of Participation is a Public Health Issue appeared first on Black Health Matters.

Asthma, a chronic inflammatory disease of the airways characterized by breathing disorders, afflicts 18.7 million adults and 7 million children in this country. And, according to the Centers for Disease Control and Prevention, those numbers are rising.

Among black folks, the numbers are particularly distressing. We have a 35 percent higher rate of asthma than whites, and that disparity is evident across all age groups. According to the CDC, the number of Americans diagnosed with asthma increased by 4.3 million from 2001 to 2009, most steeply among black children. One survey of Chicago schoolchildren ages 6 to 12 found that African Americans were more than twice as likely to have been diagnosed with asthma compared to their white counterparts.

Michael A. Lenoir, M.D., a Bay area allergist and past president of the National Medical Association (NMA), spoke with Black Health Matters about the challenges of fighting this disease.

Black Health Matters: What should we know about asthma right now?
Michael A. Lenoir, M.D.: We understand more about the disease and the triggers, so we can tailor treatment. We got anti-inflammatories, and mortality started to drop. But a lot of the interest from the first part of the last decade has been kind of lost. We’re starting to see people revert to old ways of therapy. For a long time we used Albuterol. It’s easy to get, it’s easy to use and it works. It opens the airway, no matter what closes it. The problem is that it’s not a maintenance treatment.

Are physicians not prescribing maintenance medications?
The problem is not that were not prescribing the appropriate medications, but Albuterol is so much easier to take. When you have a disease that when you’re feeling good, you’re feeling good, but when you’re feeling bad, you want relief quick, it’s hard to get people on maintenance drugs to maintain when they know Albuterol works quicker.

Why are African American children more at risk of developing asthma?
It’s really a systemic problem. African Americans are more at risk of everything. One reason is lifestyle; other reasons are access to health care, access to specialists and living in poor environments. There’s a study that says if you look at most ethnic diseases, as people go up the socioeconomic ladder, the incidence of the disease goes down. That’s not true with African Americans and asthma. We haven’t gotten the info out that you can manage this disease, but you have to have regular doctor visits.

That’s another big problem in our community. We see doctors more for illness than for wellness. Getting to the doctor—even when there’s access—we as people, particularly black males, we’re leery to go for regular visits.

What most physicians feel is that asthma rates are increasing because of exposure to hydrocarbons—people living in cities with automobiles and crowding. So even if you use the meds that are available and that are recommended, you still have to fight those factors.

You mentioned access to care. How has the Affordable Care Act helped your patients?
The Affordable Care Act has helped by providing proper insurance for millions of people. More people are covered. More African Americans are covered. Plus there are metrics doctors have to meet in that care. That’s one of the really important values. We’re in a new era in medicine when you start talking about reimbursement for quality not volume. That’s clearly the direction we should go in.

You also said physicians believe exposure to hydrocarbons is behind a rise in asthma rates. But a recent study found that living in an urban area isn’t the biggest risk for a child developing asthma, that being poor, black and Latino are bigger risks.
Environment is still a big risk factor for children. There’s no denying that we live in those [inner-city] environments more often. We’re in those spaces, and our asthma isn’t well managed. That plethora of factors increases morbidity.

Is there a genetic component to who gets asthma?
Yes. If you look at families, probably 60 percent of people with asthma have at least one family member with it. There are also some genetic differences in how we respond to therapy. If you look at Puerto Ricans, 22 percent have the gene that leads to asthma, but don’t respond to meds. Only 8 percent of Mexicans have that gene. Eighteen percent of African Americans have the gene that leads to asthma, but don’t respond to the meds. So genetics is a really major part. In the future, you’ll find that more people will be treated based on genetics.

What about clinical trials? Are there any for asthma, and how can we get more of us into those trials?
I chaired the NMA’s clinical trials project, and one of the biggest barriers is that doctors don’t refer black patients for clinical trials.

And we still remember Tuskegee….
It’s not just Tuskegee—a lot of young people barely know about Tuskegee. Some people are just afraid of experimentation. [The bigger issue is that] we’re not offered clinical trials. There are a lot of large asthma clinical trials that have shown large improvements in care. But we don’t know about them.

And doctors have the same fears about experimentation. I don’t care how you look at it, you’re still a guinea pig.

Let’s face it: Sometimes these trials work, sometimes they don’t. By the time they get to human trials, there’s usually evidence to support them working. But if they don’t have enough African Americans in clinical trials, you have stage four problems after the drug is released—where the drug doesn’t work well for African Americans. That’s another reason to encourage more African Americans to get involved. Plus, a lot of times you get better care while in a clinical trial.

So the bottom line on asthma in African Americans is….
The problem is when these diseases fall out of favor and drug companies leave town, we still have the disease. There’s still a difference between our health and that of other people. We have to look after our own. We have to take care of ourselves in this increasingly complex environment. African Americans still fall way behind the curve. In order to change that in asthma, and any other chronic disease, we have to stay on it. I tell people, if blacks with asthma got as mad about the outcomes as we do when somebody cuts in the Safeway line, we’d have this problem solved.

The post Michael A. Lenoir, M.D.: Doing Battle With Asthma appeared first on Black Health Matters.

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• Systemic lupus erythematosus is the most common form of the disease, and it involves the entire body.
• Cutaneous lupus causes a rash and lesions on the skin.
• Drug-induced lupus, which occurs when a doctor prescribes a medicine that causes lupus symptoms, usually goes away when the medication is stopped.

Davis was diagnosed with SLE. “It was a devastating diagnosis,” she reveals. “And one I didn’t take as seriously as I should.”
She takes prednisone, which has given her a moon face. She also suffers from joint problems, especially if it’s really cold or damp and humid. She jokes about buying stock in Aspercreme. And she has experienced hair loss.
The fatigue that marks the disease has most severely cramped her lifestyle. “It’s the symptom that bothers us the most,” she says. “It stops us dead in our tracks. There were times it was truly a stretch to get up off the couch.”
But perhaps her biggest lupus challenge came about a year after her initial diagnosis. “In 2010, I was diagnosed with kidney disease,” she says. At first she was able to manage the additional health threat, but by 2016, her kidney function had dipped to 4 percent. Her doctors said it was time to think about dialysis.
She wanted to handle the new diagnosis with exercise and diet. “I said, ‘Let me get my green smoothie on,’ but sometimes we have to take the medicine, and my medicine was dialysis,” she says.
Davis pulls up her shirt to reveal her catheter. “I do nine hours of dialysis with my boyfriend, Baxter,” she says jokingly. Then, serious, again, she adds: “This is my lifeline now.”
Davis’ mission isn’t only to share her own story, though her real-world examples of how lupus has affected her are an engaging way to grab an audience’s attention. “I’m just one of many people living with lupus today. I’m able to hold down a full-time job still. Some can’t,” she says.
Her bigger goal is to spread lupus awareness.
And so she shares these facts:

• Nine out of 10 lupus patients are women.
• 40 percent to 50 percent of sufferers will have organ involvement.
• 1.5 million people in the United States are living with this disease. But that’s a conservative estimate, she explains. “Lupus isn’t tracked well and doesn’t appear on your death certificate.”
• Black women are two to three times more likely to be diagnosed than white women; men are diagnosed less often, but they tend to have more severe symptoms.

Celebrities with lupus—Davis cites Toni Braxton, Nick Cannon, Selena Gomez and Lady Gaga—are doing their part, alongside organizations like the Lupus Foundation of America and the Lupus Research Alliance.
But it’s not enough.
“We are the foot soldiers spreading awareness about this disease,” Davis says, “asking for funding and more research.
“The black community has been speaking up more lately. Now it’s time to make a difference in our health. Advocacy starts with health.”
With that in mind, what can you do? Davis offers these tips:

• Educate yourself. Know the symptoms, which include malar rash, raised red patches, photosensitivity, mouth or nose ulcers, arthritis in two or more joints, inflammation, seizures and psychosis, kidney problems and blood disorders.
• Ask for a full blood workup. Your doctor should look for antibodies to double-stranded DNDA and antinuclear antibodies.
• Be a myth buster. “Lupus is not contagious,” Davis says. “And it’s not HIV.”
• Get involved in clinical trials. “I understand America has a past about testing and medication. I know about Tuskegee,” she says, “but we can no longer say we need a cure to a disease and we’re not a part of the research. We to be a part of the trials. Reach out to lupus organizations in your community and ask what you can do. Doing the most you can in your own circle is the most you can do.”
• Be informed. Even if you don’t have the disease, chances are you know someone who does. Learn how to support the people in your life who have lupus.

The post Lupus Is an Urgent Matter 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.

The post Cancer Clinical Trials 101 appeared first on Black Health Matters.

• Many respondents agree that clinical trial participation should be a routine health behavior, whether you are healthy or ill, similar to getting an annual checkup with your health care provider.
• A majority of all races say they greatly admire individuals who volunteer for clinical trials.
• A higher percentage of minorities say we are not making enough progress in medical research compared to 2013. The percentage dropped slightly among non-Hispanic whites.
• When asked if the health-care services they receive are based on the best and most recent research available, the percentage saying “no” climbed significantly across the board compared to 2013.

The post What Factors Contribute to Our Low Clinical Trial Participation? appeared first on Black Health Matters.

An hour and a half into a rousing Sunday service at the Kingdom Love Worship Center, the Rev. San Jackson paused her preaching to ask Vic Sorrell if he wanted to say a few words.
Sorrell didn’t hesitate. Bounding from his back pew to the pulpit, the white visitor stood before a congregation of African Americans, their faces politely expectant behind a blur of hand-held fans.
As community engagement manager at the Vanderbilt HIV Vaccine Program, Sorrell gives talks like this many times. But even 36 years into the pandemic, HIV can make for a difficult conversation, one the 39-year-old Sorrell tailors to the audience and the moment, speaking from his heart and trusting he’ll strike the right chord.
“Thank you for being a congregation that says, ‘Come and talk to us,’” he began that June afternoon in East Nashville. “Every one of us is either infected or affected by HIV. The virus knows no color, no socioeconomic status.”
To calls of “Yes!” and “Amen,” Sorrell spoke about an international research study called AMP—for Antibody Mediated Protection—underway at the Vanderbilt University Medical Center and other sites around the world. Run by the HIV Vaccine Trials Network, which is headquartered at Fred Hutchinson Cancer Research Center, the AMP HIV Prevention Study is enrolling 4,200 volunteers to test an experimental antibody that could potentially protect people from infection by HIV.
The antibody is modeled on one that developed naturally in a person whose immune system had been able to control his HIV infection for years without needing medication, Sorrell explained. Such rare individuals are intensely studied by scientists.
“There’s a chance a vaccine could be created that could cause that antibody response in other people and keep them from getting infected if they are exposed,” he said. “If we had a vaccine, we could truly begin to see the face of HIV changed. Thank you for being willing to support these efforts. Thank you for being the faces of love and community we need.”
As the organ started up again and Sorrell headed back to his pew, Jackson, the pastor, nodded her approval.
“Vic preached,” she said. “You will hear some people say that HIV was God’s curse. Whatever the problem, Jesus sends an answer.”
Just maybe, she seemed willing to consider, this antibody could be that answer.
Building trust
The international AMP study got underway in April 2016 when the Vanderbilt HIV program became the first of 47 sites on four continents to enroll a volunteer participant. The trial’s co-leader, the North Carolina-based HIV Prevention Trials Network, reported last week at the International AIDS Society conference that enrollment rates across all sites are running about 20 percent ahead of projections.
That strong response is in no small part due to the efforts of community outreach specialists like Sorrell. Their job is to engage interest and build trust in a clinical trial that is among the largest and most complex either of the two vaccine networks has ever conducted. And in few communities is gaining trust more important than among African Americans.
Sorrell is right that a virus knows no color or socioeconomic status. But because of many of the same barriers that contribute to health disparities in cancers and other diseases, HIV hits African Americans harder than any other group of Americans. As with whites, black men who have sex with men bear the brunt of the infections. If current infection rates continue, according to the U.S. Centers for Disease Control and Prevention, one in two gay or bisexual African-American men will be diagnosed with HIV in their lifetime.
Let that sink in: one in two.
Geographically, a majority of these new infections will occur in the South, which today has the highest HIV diagnosis rates, the largest number of people living with HIV and the highest death rates with HIV as an underlying cause in the U.S. Fueling those figures is a lack of access to quality health care due to poverty, no or inadequate health insurance, and cultural attitudes and beliefs that contribute to distrust of the medical system.
For many minority populations, distrust stems from decades of neglect and even exploitation. The Tuskegee experiment is the most infamous example for African Americans. Starting in 1932, scientists followed hundreds of black sharecroppers for 40 years to study the long-term effects of syphilis without ever telling the men they were infected or offering them treatment once penicillin proved curative.
Another equally daunting barrier is unique to HIV, according to Greg Wilson, the AMP study’s lead scientist at the Vanderbilt site.
“It’s the stigma still associated with HIV—not wanting individuals in your family to know you’re positive, not having a circle of friends you can talk to,” he said. “Family and church are large issues for African Americans. You may know that you need to go to a doctor to determine if you have HIV, but there’s a lot of baggage that’s associated with that knowledge and consequences that may come with other people knowing about it—rejection, not only from family but from your church community, which may be your major source of support.”
Barbara Gunn Lartey, the director of community engagement for the Nashville Human Relations Commission and a longtime advocate for people with HIV, agrees that stigma and fear make HIV a taboo topic in many African-American households.
“You still have families who require you to eat on paper plates at Thanksgiving,” Lartey said.
The stigma and shame go deeper than fear of infection.
“For people of color in particular, it’s an issue of your salvation,” she said. “You have voices from the pulpit saying that HIV is punishment for whatever—for being gay, for being promiscuous, for using drugs, for participating in risky behavior. In many cases, the pastor’s perspective can outweigh a parent’s. You feel like you’re being condemned to hell.”
Which brings us back to why Vic Sorrell was at a small African-American church in East Nashville on a Sunday afternoon talking about the AMP study. How he got there is a longer story.
Sorrell’s path to the pulpit of HIV outreach was not a straight one. He was nicknamed “Baby Country” when he moved to Nashville at age 17 from a small town in Virginia, determined to be a country music star. The cherubic-faced crooner had been performing on stage since he was 6. He had wanted to be Dolly Parton for at least that long—OK, maybe not to be Dolly herself, but to have her talent, her light, her presence.
He enrolled in Nashville’s Belmont University and got a degree in music management and marketing for his parents’ sake. But he also got a band and was well on his way to signing a recording contract when something happened that upended his dream: He fell in love with a man.
The surprise was how unequivocal it felt. There were no longer doubts, no telling himself it was a phase he would outgrow. And it forced a decision.
“The reality of the conservative nature of the country music industry smacked me in the face, and it was made very clear that I needed to decide what I wanted,” Sorrell said. “Did I want to be gay, or did I want to be a country star? For me, being something in the public eye that was not real and was not true was not an option.”
And just like that, the dream he had held since he was 6 disappeared.
He stayed in the music business by working in marketing but spiraled into a personal crisis. He found his way out through Marianne Williamson’s best-selling books on spirituality and decided: “I want my gifts to serve, and I’m willing to have that happen however the opportunities present themselves.”
In the 2008 Great Recession, his fallback marketing job disappeared, but a new opportunity presented itself. A friend who knew his drive to do good mentioned a job opening for an HIV prevention educator at Nashville Cares, the largest HIV services agency in the region.
As a gay man, Sorrell definitely had HIV on his radar, but he had no idea that such a job existed, much less that he could do it. He got an interview. Then he got the job.
Sorrell said the work—by which he means the people he’s met and the partnerships he’s formed at Nashville Cares and later at the Vanderbilt HIV Vaccine Program—has made him who he is today. And who he is today, many argue, is a big part of why the Nashville AMP study is shaping up so successfully.
One of his earliest partners was Lartey, who at the time was a case manager and director of women’s programs at Nashville Cares. Lartey’s and Sorrell’s backgrounds could not have been more different.
Lartey grew up in the shadow of Tuskegee. Its legacy was not so much talked about as modeled. Observing her aunts and other elders, Lartey recalled that “your head had to be pretty much hanging off to go to a doctor.”
She first became aware of HIV as a Peace Corps volunteer in West Africa and later when she studied law in South Africa. She was shocked at the widespread misinformation: The virus was believed to have been created by the U.S.; the use of condoms was seen as a ploy to control African population growth. She was shocked again to return home and see the fear, stigma and misinformation surrounding HIV in her own community.
Lartey acknowledges that she and Sorrell are “two very different peas in an odd-shaped pod.” But the two clicked right away.
“It gets my attention when someone says, ‘I don’t have all the answers, but I’m open and willing to learn.’ And that is Vic Sorrell,” said Lartey. “He gets that, at the heart of it, it’s about a person’s humanity. We believe in each other. We believe in this work of lifting up humanity.”
After Sorrell moved to the Vanderbilt HIV unit, he continued working with Lartey to set up programs for Black HIV Awareness Day at African-American churches in Nashville. Earlier this year, he joined her in a musical production about HIV prevention. The musical was written by another key partner, T.K. Hampton, a longtime HIV advocate who works for a Nashville program called Street Works that supports African-American gay and bisexual men. (The show, “YOU Shall LHiV 2 Zero,” was so successful that the group has been invited to present it at the United States Conference on AIDS in Washington, D.C., in September and at the annual Conference on Retroviruses and Opportunistic Infections, or CROI, in Boston next March.)
The only white person in the musical, Sorrell contributes a country version of the title song, talks about the AMP study—and speaks forthrightly about the institutional racism that has contributed to the high rates of HIV among African Americans. He also describes hard-won lessons on recognizing privileges he never even realized he had.
“When you get up in the morning and the first thing you think of is not the color of your skin, that’s a privilege,” he said during a recent run of the play. “Being given the opportunity to check my privilege is one of the greatest gifts I’ve ever gotten.”
AMP is an ambitious study with an ambitious goal. Each HIV-negative volunteer gets randomly assigned to receive a laboratory-produced version of the antibody Sorrell described that day at the church service or a placebo via an intravenous infusion. If the antibody provides protection against HIV as hoped, information gleaned from the study could help scientists make a vaccine that teaches the body to make such antibodies—long the holy grail of HIV researchers. A vaccine is widely considered the nail in the coffin needed to finally end a pandemic that still causes 40,000 to 50,000 new infections in the United States each year and 1.8 million worldwide.
In the beginning, the study’s organizers feared that the time commitment alone—participants receive a total of 10 30- to 45-minute infusions, one every eight weeks—would discourage volunteers. That has not been the case.
Take Justin Lofton, 25, who works at a Nashville drop-in center for young gay and bisexual African Americans called My House and who also performs in Hampton’s musical. Lofton volunteered for the study because he believes that such research is key to protecting his community.
“I work with HIV-negative men right now,” he said. “Sometimes I’ll be thinking, ‘Now we’re all negative, but if I count out one, two, one, two, one, two — half of us could get infected with HIV.”
But what keeps him coming back for the infusions are Sorrell and the rest of the study staff.
“They are invested in making us feel like more than a number,” he said. “They’re there outside the clinical role. To me, that feels like a relationship.”
Darnell Peppers, 23, agrees. He met Sorrell at a Nu Phi Zeta party—a non-university affiliated, service-oriented African-American fraternity—and took to him instantly. The fraternity’s motto is “I am my brother’s keeper,” and after reading more about the AMP study online, Peppers started asking himself, “How can I help?” He decided to volunteer for the study.
Thanks to Sorrell and the staff at the Vanderbilt program, Peppers said, “I really feel cared for. I’m going to hate when the study is over.”
So along with enrollment rates that are exceeding expectations has come another surprise: In Nashville, 33 percent of those enrolled are people of color, a higher percentage than any previous study the Vanderbilt HIV program has done.
Sorrell lays this success on the key community partnerships that he has formed with Lartey, Hampton, Lofton and others. His talent for building these partnerships has earned him a reputation throughout the HVTN as a pioneer in community engagement.
“Vic can’t be surpassed in his ability to connect to people,” said Kyle Rybczyk, the Vanderbilt program’s clinic coordinator, who hired Sorrell. “We have a solid reputation in the community for being a program that cares, that’s visible, that shows up—not just when we need people but when they need us.”
As a white man working with communities of color, Sorrell has learned it’s the showing up part that counts. The way to break down barriers is as simple as it is challenging: Open your heart. Be fully present. Repeat.
“My experience has been that even if at first there is a hesitancy to my being there, people eventually understand that my commitment is to however I can assist with what they’re already doing,” he said. “How I can provide resources or any kind of support. Once people have experienced that again and again, a trust is established and I find that there really aren’t barriers to my being there. But it takes time.”
Being a community outreach specialist is not a 9-to-5 job. Evenings, weekends, hot Sunday afternoons in a small church, Sorrell will be there. Again. And again. And again.
From Fred Hutch News

The post Community-Building Leads to Record Enrollment in HIV Prevention Study appeared first on Black Health Matters.

A cancer diagnosis was the last thing then 22-year-old Jacqueline Smith had on her mind. She was young, close to graduating from college and was confident her future was bright.
But there was a sinking feeling something wasn’t right.
“I had this lump in my bikini line that wouldn’t go away. I went to the doctor at school and was told that it wasn’t a big deal and that it was probably an ingrown hair. One doctor told me that I just had an inflamed lymph node and that if it wasn’t bothering me than I shouldn’t bother it,” Smith told us in an exclusive interview.
While the New Jersey native followed doctor’s orders and “left it alone,” she found it difficult to ignore that nagging voice that insisted to get it checked again. And that’s what she did when she moved back in with her parents after graduation.
Looking back, Smith swears that was the best decision she’s ever made.
“My doctor at home took a look at it and said that I needed to see an oncologist, just as a precaution.”
Soon after, Smith was given her results: She had stage-3 melanoma, the deadliest form of skin cancer, which is most often caused by ultraviolet radiation from sunshine or tanning beds.
When she heard those words, not only was she upset, she was also shocked.
“I kept thinking, ‘I am not a fair-skinned, middle-aged woman! How is this possible? We don’t get skin cancer,’” she said. “I just couldn’t believe it.
“I remember being in middle school and people telling me that I didn’t need sunscreen because I was darker skinned.”
But Smith isn’t alone: Too many black women and women of color aren’t aware of our risks. Yes, our melanin gives us added protection from the sun’s rays, but it doesn’t render us exempt from developing skin cancer. And while melanoma is more common among whites than African Americans, sadly, our health outcomes are worse.
According to Cancer.org, the five-year survival rate for African Americans is 69 percent compared to 93 percent for whites. Experts believe this mortality gap is largely due to the fact that by the time African Americans are diagnosed, their cancer is at an advanced stage (52 percent compared to 16 percent among whites), which makes it harder to treat.
Add in the lack of access to health care and a dermatologist, and it’s no wonder this racial health disparity continues to persist.
With the love and support of her parents friends and faith, Smith focused on the future and beating cancer.
“I grew up going to church and that’s helped me to not worry about what I cannot control.”
Her treatment included removing a lymph node and adopting a “wait and see” approach after doctors confirmed they didn’t detect any cancerous cells.
But three years later, Smith noticed another lump in her groin.
“They were trying to be optimistic, but I had been down this road before. I knew what it was,” she said. “They did a biopsy and told me that it was melanoma. I was devastated.”
This time around, removing a lymph node and adopting a “wait and see” approach wasn’t going to cut it. Smith’s cancer was aggressive and she needed surgery and serious treatment. Soon after, she was sent to the Moffitt Cancer Center in Tampa, Florida, to get multiple lymph nodes removed, start an experimental interferon treatment through a clinical trial and undergo radiation.
“Part of me thought I was going to die. One doctor even told me that it would be a miracle if I lived for another five years. Thankfully, Dr. [Vernon K.] Sondak from the Moffitt Cancer Center was encouraging and said, “We’re getting this cancer out.”
Dr. Sondak explained to the rareness of Smith’s cancer given that she didn’t have any strange moles or skin discolorations, which are common signs of skin cancer. “We believe Jackie’s melanoma started on the skin before it went to the lymph nodes, and if so she is one of those rare cases.”
He also shared some knowledge on common areas African Americans develop skin cancer.
“Melanomas that occur on other parts of the body that are not normally exposed to the sun—the soles of the feet, under the fingernails and toenails are rare, but they make up a larger percentage of the cases of melanoma in African Americans,” he said.
Ten years later, 36-year-old Smith is wonderfully cancer free.
While she suffers from a few complications and hates that any small health issue, such as low iron levels or a pain, can ring the alarm her cancer might be back, she’s living life to the fullest and is even finishing her Ph.D. in sociology.
Smith has also made it her life’s work to educate the black community on the dangers of skin cancer.
“It’s important to share my story with other African Americans so that they can understand that skin cancer is our problem too. I’ve worked with other cancer organizations and have even been to Capitol Hill to spread the word!”
And the impact of her advocacy has definitely been recognized.
“Jackie’s story has been a big help in this regard—she’s done more than anyone I know to help spread the word about the risk of skin cancer and especially melanoma regardless of your skin coloration,” Dr. Sondak said.
Dr. Sondak and Smith offer this advice:
Don’t slack on getting screened: While there is no “one size fits all” approach to how often you get checked, you still need to get checked.
“Age, overall health, family history, skin coloration, past history of skin problems and sunburns and other factors all play a role in defining how often a person should be checked by a doctor and whether that doctor should be a dermatologist,” Dr. Sondak said. “But getting your skin checked is painless and usually takes less than an hour. Be sure to get your fingernails and toenails and your palms and soles checked as part of the process, and always alert your doctor if you notice anything at all wrong with your skin for more than a few days or weeks.”
Also, don’t forget the sunscreen and limiting your direct exposure to the sun, Smith added.
Advocate for yourself: No doubt, doctors are experts in their field, Smith stressed. But she said it’s important to be confident that you are the expert of your own body. You know when things are not right.
“There were so many times I was dismissed and told ‘not to worry.’ Had I listened to that, not spoke up and got checked by my own doctor, I would probably be dead,” she admitted.
Don’t fear clinical trials: As part of her treatment, Smith enrolled in a clinical trial, which she knows African Americans are wary of given our tumultuous history of mistreatment by the medical community. But in her eyes, it was definitely worth it. “God forbid you have cancer, but if you do and are offered to be in a clinical trial, strongly consider enrolling, because it can definitely save and change the quality of your life.”
Learn more about skin cancer at skincancer.org.
From Hello Beautiful

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• What’s the goal of the study?
• What kind of drugs, tests and treatments will you receive?
• How long will the study last, and how many times will you have to go to the facility administering it?
• How will they keep your information private?
• What happens when the study ends?

What are the possible benefits and risks?
You may not get any direct benefit from being in a clinical trial. The medicine or treatment may not work for you.

• What are the benefits of the treatments?
• What are the risks and side effects of the treatments?
• Are there any other treatments or options for people with your disease?
• Can you take your other medications while participating in the trial?

What other support is available? What are the possible costs?

• What treatments or services will the study pay for?
• Does the study offer child care or transportation?
• Will you have to absorb any of the costs yourself?
• What will your insurance cover?

Who has more information?

• Who should you contact if you have questions or problems?
• How will you get the results?

The post 15 Things to Know Before You Join a Clinical Trial appeared first on Black Health Matters.

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• 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.

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• There’s a dedicated section on the FDA’s website for patients that provides information and tools to encourage clinical trial participation. This section includes information that focuses on people of different ages, races, ethnic groups and genders.
• The FDA’s Office of Women’s Health, along with the National Institutes of Health Office for Research on Women’s Health, launched an initiative to raise awareness among women and share best practices for clinical trials.
• The FDA’s Office of Minority Health also has tools to encourage people and their health-care providers to learn about trials, including public service announcements.
• And the FDA offers guidance for researchers as appropriate, including recent recommendations to industry and agency staff on how race and ethnicity data should be collected.

Many people volunteer for clinical trials to help others. So, although you may not directly benefit during a clinical trial, the information collected can add to scientific knowledge and help with future research and product development.
You can talk to your health-care provider to find out if a clinical trial may be right for you.
NIH also keeps a list of ongoing trials, so you can search for studies at clinicaltrials.gov. All clinical trials specify who is eligible to participate, and participants must be accepted before joining.

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