Have you been newly diagnosed with non-small cell lung cancer (NSCLC)? Learn if a clinical trial is right for you. 

If you have been diagnosed with advanced or metastatic NSCLC or have a specific mutation in the epidermal growth factor receptor (EGFR) gene, the Copernicus clinical trial might be an option for you. The Copernicus clinical research study is evaluating the addition of an investigational medication to an oral medication and chemotherapy for NSCLC.  

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

A clinical trial, also called a clinical research study, is a carefully designed scientific evaluation of an investigational medication. Clinical trials help doctors and researchers determine if an investigational medication is safe and/or effective for the treatment of a condition, disease, or disorder.  

Clinical trials are completely optional, and each one has a specific set of criteria a participant must meet to join. Clinical studies, conducted by doctors and researchers, often require a large number of volunteers to participate in a single study, and sometimes thousands are needed to obtain reliable information. 

What can I expect if I join a clinical trial?  

If you qualify and choose to join a clinical trial, you will first sign an informed consent form (ICF). “Informed Consent” is a process of information exchange before an adult agrees to participate in a clinical trial. During this process, you will be asked to read the ICF, and a study doctor or member of the research team will explain all the details of the study and answer your questions.  

By signing the ICF, you agree to volunteer to take part in the study, you understand the study procedures, risks, and potential side effects, and that you can leave the study at any time, for any reason. If you don’t understand what is expected of you or what is written in the document, you should continue to ask questions and talk with the study doctor, your family, or others that you trust, until you feel you understand. 

What is the purpose of the Copernicus study?  

The purpose of this clinical research study is to determine the safety and efficacy of the addition of an investigational medication in combination with another oral therapy or chemotherapy for adults who have been diagnosed with non-small cell lung cancer (NSCLC). 

Am I eligible for the Copernicus study?  

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

• Are 18 years of age or older 

• Have been diagnosed with advanced or metastatic NSCLC 

• Have a specific mutation in the epidermal growth factor receptor (EGFR) gene 

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

What can I expect if I join the Copernicus study?  

• If you qualify and choose to join the study and sign the informed consent form (ICF), you will be asked to attend a screening visit with the study doctor to ensure you meet all eligibility criteria. 

• Eligible patients will be placed in a study group. Participants will receive the investigational medication + oral study medication.  

• The oral study medication is taken once a day by mouth. The investigational medication is given as an injection under the skin. 

• The study medication will be given in recurring 28-day cycles. 

• At study clinic visits, participants will have their health evaluated through various health exams and tests. 

• Study participation may last up to about 3 years, as long as the participant wants to continue, and the study doctor believes it is safe. 

What is expected during my participation in the Copernicus study?  

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

• Tell the study doctor/staff about any health problems you have during the study.  

• Come to all study visit appointments.  

• Ask the study doctor/staff any questions you have about the study. 

• Tell the study doctor/staff about any new medicine you take during the study, as well as any changes to your medicines.  

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

You can talk to your doctor to find out if you are a candidate for a clinical trial. Click here to visit the study page and learn more about the Copernicus study.   

Where can I go to learn more about NSCLC?  

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

• CancerCare Lung Cancer Support: Access free, professional support services.  

• The American Lung Association: The patient and caregiver network is an online support program that offers access to resources 

This article is brought to you by Janssen. 

The post Life After a Lung Cancer Diagnosis appeared first on Black Health Matters.

Despite these realities, Black patients are underrepresented in clinical research for systemic sclerosis. Lack of representation often leads to a gap in information and what researchers understand about how new treatments work in various groups.

The DAISY trial is studying an investigational medicine in patients with systemic sclerosis. Eligible patients must be at least 18 years of age, have been diagnosed with systemic sclerosis in the last six years, and are either not taking medication for it or receiving stable doses of certain medications. Click here to learn more about this research study.

Participating in DAISY is optional. You can change your mind and opt out at any time.

Systemic Sclerosis in the Black Community

Systemic sclerosis may be rare, but its impact is felt deeply in Black communities. Studies show that Black patients are:

• More likely to be diagnosed at a younger age
• More likely to experience severe disease
• At higher risk of lung involvement, which can make breathing difficult
• Less likely to receive timely diagnosis and treatment

These disparities don’t just happen by chance. They are rooted in a variety of barriers to care, delayed diagnoses, and a lack of representation in research. Clinical trials promote quality care for those who qualify, regardless of their background.

What the DAISY Trial Is About

Clinical trials are part of the research process that explores experimental treatments and determines if they are safe and effective. There are specific criteria that the trial clinical team will review with you to see if DAISY is the right fit.

If you qualify and choose to take part, you won’t be left to navigate the journey alone. You’ll be supported by a team of medical staff who will answer your questions, monitor your health, and guide you step by step.

The results from this clinical trial could help people living with systemic sclerosis in the future.

Building Trust

It’s natural to have questions or doubts about clinical trials. There are built-in safety measures to ensure the clinical trial process is safe for those eligible to participate. Today’s trials have strict safety standards designed to protect participants.

Clinical trials are not just about science. Your experiences matter. Your participation helps researchers understand, and you contribute to closing the knowledge gap. You also help ensure that treatments are developed with the insight needed to make certain Black patients are represented in the data.

Take the Next Step

Living with systemic sclerosis can feel isolating, but you are not alone. Others are walking this path with you. Participation is always your choice.

If you or someone you love has been recently diagnosed with systemic sclerosis, the DAISY clinical trial may be an opportunity worth exploring. Click here to learn more, take the screener, and find out if the DAISY trial is right for you.

Content sponsored by AstraZeneca.

References:

• National Scleroderma Foundation
• American College of Rheumatology
• National Scleroderma Foundation

The post Black Representation in Systemic Sclerosis Research appeared first on Black Health Matters.

For Black patients, research shows that lupus is more common, more severe, and diagnosed at younger ages compared to other groups. Additionally, Black patients are at greater risk for worse outcomes when lupus attacks the kidneys.

IRIS is a clinical trial evaluating an investigational drug in patients living with lupus nephritis. You may be eligible to participate if you are at least 18 years of age, have been diagnosed with lupus nephritis, and are taking medication to treat it.

Clinical trial participation offers a pathway for those eligible to access a potential new treatment while receiving regular check-ups and assistance in managing their condition. Click here to learn more about a new clinical trial for people with lupus nephritis. Remember that taking part in a clinical trial is always voluntary, and you can opt out at any time.

Why Representation Matters in Research

When it comes to lupus nephritis, representation in clinical trials has been limited. Historically, Black patients have been underrepresented in research despite being disproportionately affected by the disease. This lack of representation creates a significant health gap.

By participating in clinical trials like IRIS, Black patients help researchers better understand how the study medications may affect those who take them. Every participant adds valuable information. Your voice, your experience, and your journey truly matter in shaping the future of lupus care.

Understanding the IRIS Trial

The IRIS clinical trial is studying an investigational treatment for lupus nephritis. The goal is to determine how this treatment affects individuals living with lupus nephritis.

If you qualify and choose to join the study, you’ll be cared for by a dedicated medical team throughout the entire study. Your health and safety will always be our top priority. The doctors and staff will explain the process, answer your questions, and guide you at every step.

Taking part in a clinical trial is always voluntary. If you decide to join IRIS, you’ll not only have the potential to benefit personally but also contribute collectively to the advancement of lupus care.

Trust the Process

It’s no secret that many in the Black community carry deep concerns about clinical research. Today, clinical trials are governed by strict safety rules, and protecting participants is the top priority.

Additionally, the IRIS study team understands that lupus nephritis does not affect everyone equally. By working with patients from different backgrounds, they are committed to making sure the research reflects the real-world experiences of Black communities.

When you participate, you are supported and cared for by a dedicated team throughout the process.

Consider Clinical Trials

Choosing to take part in research is a powerful step. For you, it may mean access to new treatments and closer monitoring of your condition. For the community, it means helping ensure that future lupus nephritis therapies are designed with Black patients in mind.

If you or someone you love is living with lupus nephritis, now is the time to learn more about IRIS. To learn more about the IRIS study and see if you may qualify, click here to take the screener questionnaire.

Content sponsored by AstraZeneca

References:

• NIDDK Lupus Nephritis
• Lupus Foundation of America. What is lupus nephritis?

The post Why Clinical Trials Matter for Black Patients Living with Lupus Nephritis appeared first on Black Health Matters.

Breastfeeding Benefits the Mother and the Baby.

The American Academy of Pediatrics recommends exclusive breastfeeding for six months, followed by continued breastfeeding accompanied by solid foods for at least two years and beyond, as desired by mom and baby.
Honestly, I didn’t know what breastfeeding truly entailed or what to expect, and I certainly wasn’t prepared for how challenging it would be in the beginning.
Almost two and a half years and two babies later, we are still going strong.

The Early Days

In the beginning, breastfeeding was painful. My nipples cracked and bled. My baby didn’t latch well. I was exhausted, overwhelmed, and silently wondering why something so natural felt so hard. There were nights when I cried while she nursed. I was in pain and unsure if I could do it much longer. If we’re being honest, there were times when I dreaded nursing because of how painful it was. I found myself counting down the days until my body would tell me I was done.

I’m glad I kept going.

When I think back to that time, I often wonder WHY I kept going. What did I have to prove? Because fed was best, right?

Black Women Have Specific Challenges and Need Multifaceted Support

At that time, I wasn’t aware that many Black women struggle to get help with breastfeeding. Black women have the lowest breastfeeding initiation and continuation rates of any racial group in the U.S. According to the CDC, only around 73% of Black mothers begin breastfeeding compared to an overall initiation rate of about 84%. The solution to this disparity is multi-faceted, but we shouldn’t have to fight to feed our babies. I didn’t know how rare it was to see a lactation consultant who looked like me or understood our specific struggles as Black women. I didn’t know that systemic disparities made this experience even more complicated for moms like me.

I questioned my breastfeeding experience a lot. What I later learned is that breastfeeding can be hard, especially without support. Many Black women face added challenges, including access to lactation consultants, access to mom and baby-friendly hospitals, higher pressure to return to work, and even cultural stigma. I soon realized that even having the resources to breastfeed our babies is a privilege.

Why Black Breastfeeding Matters

We shouldn’t have to choose between our jobs and our health. We shouldn’t feel ashamed for deciding to breastfeed, or not. By the time my daughter was three months old, we had found our rhythm.

Nursing became our quiet time together, our reset. When I became pregnant again, our journey naturally came to an end. I listened to my body when it was ready to shift its focus to my growing son. We weaned gently, just after she turned 18 months. It was bittersweet.

Now, I’m nursing my son with a little more wisdom, knowledge, and much more grace.

Here are four lessons I learned along the way:

1.  Ask for help. If possible, ask for a lactation consultant before leaving the hospital. If that’s not an option, look for local or virtual support groups. My sister-in-law and fellow nursing mama was my saving grace, especially during those early days. My insurance also paid for home nurse visits, and I received additional lactation support from a certified lactation consultant. See what insurance benefits you may qualify for.
2. Advocate for yourself. If something feels off, speak up. Painful latching, clogged ducts, and low milk supply aren’t things you have to “push through” without help, and they are often a result of deeper issues. Ask if your baby should be evaluated for tongue or lip ties. Your experience matters, and your concerns deserve attention.
3.  Ignore the noise. Everyone has opinions, including family, friends, and even strangers. Only you know what works best for your baby and your body. Whether you nurse for two weeks, two years, or not at all, always remember that fed is best.
4. Take care of yourself. Breastfeeding can drain your energy physically and mentally, especially during those early postpartum days. Add in returning to work while also keeping your household afloat, and burnout can sneak up quickly. Keep snacks and water nearby, rest when you can, and don’t forget you birthed a human. Your body and mind are healing. Give yourself grace.

It’s a Journey Worth Taking

I won’t pretend it was all magical. There were days I hated pumping, nights I dreamed of sleeping through without waking up drenched, and many moments I felt weak and defeated. Looking back, I’m grateful I kept going not just for the nutritional benefits, but for the bond it built between me and my babies.

Breastfeeding has given me a new respect for my body. It has reminded me that strength doesn’t always look graceful. Most importantly, it connected me to a powerful legacy of Black motherhood, one I’m proud to carry forward.

We Deserve More Support

August is National Breastfeeding Month, and Black Breastfeeding Week is celebrated during the last week of August. If we want to help close the gap and reduce breastfeeding disparities, we must work towards positive change. We must invest in community-led breastfeeding initiatives and education, train and hire more Black lactation consultants, and end the stigma in our own families and circles.

Nursing is a personal decision that deserves care, dignity, and support every step of the way.

To the mamas starting out, trust your instincts, do your research, lean into community, and know you’re not alone. Your journey might not be perfect, but it’s yours. You are doing an incredible job.

Resources:

Breastfeeding Overview:AAP.Org

Newborn and Infant Breastfeeding. AAP. Org

Racial and Ethnic Disparities in Breastfeeding Initiation:CDC.gov

The post My Breastfeeding Journey appeared first on Black Health Matters.

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

Why This Matters

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

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

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

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

How Telehealth Works

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

They found that telemedicine:

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

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

Times Are Changing

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

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

The Passion Behind the Paper

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

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

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

What’s Next?

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

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

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

References

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

American Cancer Society. What Is Multiple Myeloma?

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

Breast cancer survivors Carlin Hafiz, founder and CEO of Th3 Pink Haus, and Amanda Butler, fitness trainer and founder of Cancer Baddies, shared their experiences with scalp cooling and how it can make a difference.

What Is Scalp Cooling?

Scalp cooling works by lowering the scalp’s temperature to decrease blood flow and reduce the exposure of hair follicles to chemotherapy drugs. There are two types of scalp cooling: automated and manual. Only the computerized systems are approved and reviewed by the FDA. Patients wear a snug cooling cap during chemotherapy sessions. The caps are thick, bulky, and snug-fitting to maintain low temperatures. They must fit tightly to ensure the best results to help reduce hair loss. However, results may vary.

Before considering scalp cooling, discuss it with your healthcare provider to ensure it is appropriate for your specific type of cancer and cancer treatment.

Why Scalp Cooling Matters

Hair is more than just physical for many women, especially those undergoing cancer treatment. Amanda Butler explains, “I was diagnosed with breast cancer at the peak of my fitness career and had grown my career to be on camera. There was no amount of money that I wasn’t willing to spend to be able to try to save this part of my life.”

Carlin Hafiz agrees, adding that it made a huge difference being able to cut her hair on her terms.

She states, “Having this option was liberating to me because I got to decide to sit in that chair and say cut my hair off into this style, not cut my hair off because I’m getting ready to go through chemotherapy.”

Scalp Cooling for Textured Hair

While scalp cooling is effective, women with textured hair face unique challenges. Textured hair, which tends to be denser and tightly coiled, can make achieving a proper cap fit tricky. Carlin emphasized the importance of preparation. “Flat braids or twists were key for me. The day before treatment, I would section my hair and twist it, but I would start the twists mid hairshaft applying light oils and leave-in conditioner.”

Amanda highlighted her workaround: “Initially, when applying the cold cap, none of my scalp was exposed, so I lost a lot of hair after that first round. After that, I twisted my hair into rows so that my scalp was exposed, and that helped so much more, but I had to figure that out on my own.”

Amanda and Carlin attest that applying for the cap can be difficult and tedious. However, this process can vary depending on the company providing the cold caps. You can use the cap on your own or hire a technician through the company to assist with the process.

Amanda, for example, only had help from a technician for the initial visit. She had a family member shadow this process and allowed friends and family to assist with future sessions.

She notes the process was exhausting. “I would start cold capping around 3:00 pm. Then I’d get my first infusion at 4:00 pm, and I wouldn’t stop cold capping until around 10:00 pm. So it was nearly 7 hours of cold capping on chemo days. It is very time intensive.”

On the other hand, Carlin allowed the technician to assist during each session, which can cost anywhere from $500 to $600, not including the cold cap itself. “The technique is very time-consuming. The technician would accompany me to my chemo sessions, along with my husband or children,” she explained. “They changed my cap every 30 minutes and followed me home. They also had to sit with me for hours afterward to switch out my cap at home.” Wearing protective styles such as cornrows or flat twists helped create a smooth base, allowing better contact between the scalp and the cooling cap. Keeping hair moisturized and detangled can help make it easier to manage between sessions.

You Need Access and Resources

Cost can be a barrier, as scalp cooling systems can range from $1,500 to $3,000 per treatment. However, both survivors highlighted the importance of researching grants or financial aid. Carlin and Amanda shared the importance of research, as some organizations and non-profits may offer financial assistance to help cover the cost.

It Requires Emotional Resilience

Both ladies agreed that while scalp cooling isn’t guaranteed to work for everyone, the process can make a difference depending on your goals.

Amanda shared: “I tried cold capping, and at that moment, that was right for me, but I still lost nearly 70 to 80% of my hair. It’s a lottery whether it will work or not. I feel like many cold capping directions are geared toward non-textured hair, so I had to figure out what would work for me, and I still lost a large amount of hair. I would not choose to do it again. It was very exhausting.”

Carlin, however, says she would do the scalp cooling process over again: “I was in control of how I got to cut my hair afterwards. I still had hair. I still felt great, and that was what was important to me. Even though I still experienced hair thinning, it didn’t matter.”

Final Thoughts

Scalp cooling offers an option to preserve hair during a time of immense change, but it’s just one part of the journey. Whether you choose cold capping, rock a bald head, or opt for protective styles, your experience is valid and beautiful. If you’re considering scalp cooling, speak with your doctor, explore resources, and connect with communities like Th3 Pink Haus or Cancer Baddies for guidance and support.

The post Will Scalp Cooling Prevent Hair Loss During Cancer Treatment? appeared first on Black Health Matters.

As the popularity of these medications grew, supply shortages made it difficult for patients to access the approved drugs. This created an opportunity for compounding pharmacies to produce alternative versions.

Compounding pharmacies can legally create customized medications when a commercially available drug is unavailable, especially during shortages.

FDA’s New Clarification on Compounded GLP-1 Drugs

The FDA recently clarified its stance on compounded GLP-1 drugs, emphasizing that compounding pharmacies must stop producing unauthorized copies of these medications by specific deadlines. The two types of facilities impacted by this new guidance, 503A pharmacies (those serving individual patients by prescription) and 503B outsourcing facilities (larger facilities that manufacture sterile medications in bulk), must stop producing compounded GLP-1 drugs by April 22nd and May 22nd, respectively.

These deadlines mark the end of the widespread availability of compounded GLP-1 drugs that became common during the supply shortage.

The FDA’s recent guidance is driven by concerns about the safety, quality, and effectiveness of compounded GLP-1 medications.

Unlike FDA-approved drugs, compounded medications do not undergo the same rigorous testing for safety and efficacy. This has raised several key concerns regarding variance in dosing and misleading advertising.

What’s Next?

The FDA’s recent actions are designed to protect patients from potentially unsafe medications while encouraging better access to approved treatments. ]

If you’re currently using a compounded GLP-1 medication for weight loss, it’s essential to plan ahead. Start by talking to your healthcare provider about switching to an FDA-approved alternative or exploring other treatment options that fit your health needs.

Since compounded versions will only remain available until spring 2025, now is the time to review your plan and discuss potential adjustments. Your provider can help you manage this transition safely, ensuring you continue to receive effective support for your weight management goals. Be cautious when purchasing medications online or from unregulated sources.

References:

• FDA’s Concerns with Unapproved GLP-1 Drugs Used for Weight Loss

The post FDA Takes Action on Compounded GLP-1 Drugs: What This Means For You appeared first on Black Health Matters.

Obesity and cardiovascular disease (CVD) are often treated as separate conditions, yet they are deeply interconnected.

People living with obesity are more likely to develop heart disease, even if they don’t currently have high blood pressure or other common risk factors. Understanding this connection can help shift the focus toward early weight management to protect our heart health for years to come.

How Obesity Drives Heart Disease Risk

Carrying excess weight, particularly around the abdomen, places added strain on the heart. Obesity can trigger inflammation, disrupt blood vessel function, and raise cholesterol levels. Over time, these effects contribute to conditions such as high blood pressure, type 2 diabetes, and high cholesterol.

These issues create a dangerous cycle as each condition further increases the risk of the others, ultimately increasing the likelihood of a heart attack, stroke, or other heart event.

Why Early Weight Management Is Crucial

Addressing obesity early can help break this cycle. Studies have shown that losing as little as 5% of body weight can lead to significant improvements in blood pressure, cholesterol levels, and blood sugar control. These changes not only reduce immediate risk but also help protect the heart long-term.

Waiting until heart disease symptoms appear can make treatment more complex. By prioritizing healthy weight management sooner, we can take proactive steps to reduce the risk of developing heart-related conditions.

Breaking Barriers to Sustainable Weight Loss

For many of us, embarking on a weight loss journey can feel overwhelming, especially if weight has been a lifelong struggle.

To achieve lasting change, we must approach weight management with compassion towards ourselves and find support.

Taking small, realistic steps often produces better long-term results rather than extreme diets or strict workout plans.

We don’t have to do it alone. One simple step towards lasting change is partnering with our healthcare providers. This is a crucial first step. They can assess our current health, discuss goals, and recommend strategies aligning with our lifestyles.

By partnering with a trusted healthcare professional, we can gain the support and guidance needed to make sustainable changes to protect our heart health.

The Power of Knowing Our Risks

If we have a family history of heart disease, taking steps to manage our weight may help us avoid repeating that pattern.

Regular check-ups, blood pressure and blood sugar monitoring, and cholesterol screening can provide valuable insights into our heart health status.

For those struggling with obesity, consulting with healthcare providers about tailored weight management strategies can offer new pathways to improved well-being.

References

• Obesity and Cardiovascular Health
• Obesity Action Coalition. Obesity and Heart Disease
• AHA. Obesity and Cardiovascular Disease: A Scientific Statement from the American Heart Association

The post Obesity and Heart Health: Why Early Weight Management Matters 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.

A Mother’s RSV Journey

Charzell is a mother of two who experienced the frightening reality of RSV when her
youngest child was diagnosed. Charzell recounted, “We were visiting family and I had
gone out to run some errands. My mom called me and let me know my daughter was
having a hard time breathing and choking on her mucus. I was in a panic and didn’t
know what to do.”

Charzell ended up taking her daughter to the emergency room where she was initially
sent home. However her daughter’s symptoms failed to improve, resulting in a second
emergency visit a few days later where she was eventually diagnosed with RSV.
Charzell’s story resonates deeply with those who have found themselves in similar
situations, shedding light on the emotional toll RSV can take on families and also the
importance of advocating for your children’s health. She also shared how gaps in
education provided in the hospital and an initial missed diagnosis affected her family.

Expert Perspective on RSV

Following Charzell’s story, the panel transitioned to a discussion with Dr. Jasmine
Weiss, a board-certified pediatrician and Assistant Professor of Pediatrics at The
University of North Carolina Chapel Hill. She emphasized how RSV symptoms can look like other illnesses including the common cold. “Symptoms tend to occur in stages,” she explained, urging families to be vigilant about recognizing symptoms such as difficulty breathing and decreased appetite and seeking medical care.
She stressed the importance of seeking medical attention early and returning to the hospital or clinic if needed if symptoms worsen, just as Charzell did.

Symptoms of RSV may include:

● Runny nose
● Decreased appetite
● Coughing
● Sneezing
● Fever
● Wheezing

Empowering Communities

By blending expert advice with real-life experiences, the webinar emphasized the power
of education, awareness, and advocacy in combating RSV. This event highlighted the
importance of RSV education and actionable strategies to protect families.
We encourage you to join the conversation, and join us in spreading awareness of RSV.

Click here to listen to the webinar, and click here for more information about RSV.
MAT-US-2500026-v1.0-01/2025

The post Navigating RSV to Help Protect the Health of Our Babies: A Mother’s Story and Expert Insight 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.

The Office of Minority Health has highlighted the following statistics:

• African Americans represent nearly 13% of the United States population but made up more than 42% of HIV cases in 2019.
• In 2020, African Americans were more than 7 times more likely to be diagnosed with HIV, as compared to white counterparts.
• African American males and females have higher rates of AIDS than white males and females.
• African American men and women are more likely to die from HIV infection as non-Hispanic white men.

By examining the causes of these disparities, this article aims to foster a deeper understanding of HIV in the Black community and promote a more inclusive and supportive approach to HIV awareness by eliminating stigma.

History of HIV in Black Communities

The history of HIV in Black communities is complex. Social, economic, and health-related factors have contributed to the epidemic’s disproportionate impact. The virus was first identified in the early 1980s. By the mid-1980s, HIV was spreading rapidly among marginalized groups, including Black Americans.

Initially, public health responses were slow and ineffective. In the 1990s, Black communities faced many unique challenges such as higher rates of poverty, limited healthcare access, and systemic discrimination. These factors exacerbated the spread of HIV and hindered effective prevention and treatment efforts. Misinformation and stigma further isolated those living with HIV, discouraging testing and open discussions about the virus.

Over the years, community-based organizations and activists have played crucial roles in raising awareness and advocating for better resources and support. Despite significant advancement in HIV treatments and prevention, Black communities continue to experience higher rates of HIV.

Current State of HIV in the Black Community

While there has been much progress, the current state of HIV in the Black community remains a critical public health concern. Black Americans remain disproportionately impacted by HIV, representing a higher percentage of new diagnoses, people living with HIV, and HIV-related deaths compared to other racial and ethnic groups.

Areas of progress include advances in HIV treatment and prevention, such as antiretroviral therapy (ART) and pre-exposure prophylaxis (PrEP) which have improved health outcomes and reduced transmission rates when taken as prescribed. Community-based organizations and public health initiatives are working tirelessly to increase awareness, promote testing, and provide culturally competent care and support.

Efforts to address HIV in Black communities emphasize the importance of reducing stigma, increasing healthcare access, and improving education surrounding HIV prevention and treatment.

From Stigma to Support

Addressing HIV in the Black community requires us to acknowledge the challenges and systemic inequities faced by Black Americans. While significant strides have been made in treatment, prevention, and decreasing stigma, socioeconomic barriers, and healthcare disparities continue to fuel the epidemic.

It is important to foster open dialogue, provide culturally sensitive and appropriate education, and ensure equitable access to healthcare resources. We must also support community-driven initiatives and policies that promote HIV care and prevention.

By working together, we can overcome the barriers of stigma and discrimination and empower our community with knowledge and resources. Choosing to participate in an HIV clinical trial is one way to help advance HIV research. Clinical trial participation is a personal decision, and it’s important to weigh all options and choose what feels right for you. Visit here to keep up with Gilead’s specific HIV studies, explore your possibilities, and find more information.

References:

U.S. Department of Health and Human Services Office of Minority Health. HIV/AIDS and African Americans.

AidsVu. HIV in Black Communities.

Minority HIV/AIDS Fund. Impact on Racial and Ethnic Minorities.

The post From Stigma to Support: HIV Awareness in the Black Community appeared first on Black Health Matters.

For Black women, understanding the complexities of HIV is particularly important due to social, economic, and healthcare disparities that heighten our vulnerability. By exploring the latest statistics, some of the causes of HIV disparities, and preventative measures, we hope to empower Black women with the knowledge and tools necessary to take action and help protect their health while advocating for their well-being.

Identifying the Root of HIV Disparities

Black women are disproportionately affected by poverty, lack of access to quality healthcare, and limited educational opportunities. Socioeconomic factors can influence access to HIV prevention, testing, and treatment services.

Recognizing and addressing the risks and understanding some of the HIV disparities among Black women is essential in developing targeted interventions to prevent HIV transmission and improve health outcomes.

One challenge lies in the focus of HIV prevention efforts on men who have sex with men (MSM) and transgender women. Black women should not be left out of these efforts, especially given the alarming statistics regarding new infection rates.

Another challenge exists in the suboptimal use of prescription medication used for HIV medication. Pre-Exposure Prophylaxis (PrEP) therapy is a highly effective way to prevent HIV. Due to barriers such as unconscious bias, undermining risk of contracting HIV, fear of side effects, and lack of awareness, Black women may be less likely to be offered or request PrEP therapy.

PrEP Use Among Black Women

PrEP can be highly effective at preventing HIV when taken as prescribed, so why aren’t more women taking it? Previously, HIV prevention efforts focused on human behavior and increasing safer sexual practices. Now, due to advancement in HIV prevention research, the use of medication therapies involving antiretroviral (ART) drugs are used.

PrEP is recommended in many high risk groups including heterosexual women who are HIV-negative and:

• Do not consistently use condoms
• Have multiple sexual partners
• Have an HIV-positive partner
• Have been diagnosed with an STD in the past 6 months

Some reasons PrEP use may be lower among Black women include lack of awareness, provider comfort with prescribing for women, and cost especially for uninsured or underinsured individuals. Discuss your options for HIV prevention with your healthcare provider. It may not be obvious to them that you desire PrEP, but it is important that you explore your HIV prevention options.

Take Action

Empowering ourselves with knowledge about HIV helps combat the epidemic within our community. By understanding the unique risk factors, accessing prevention tools like PrEP, and advocating for equal healthcare, we can take proactive steps to protect our sexual health. As Black women, it’s essential to foster open dialogue and promote education and awareness surrounding HIV diagnosis, prevention, and treatment.

One way to contribute to these efforts and advance HIV research diversity is by considering participation in clinical trials, which play a critical role in developing new treatments and prevention methods tailored to the needs of our community.

Deciding to participate in an HIV clinical trial is a deeply personal choice, and it’s important to weigh your options and consult with healthcare professionals. Even if you choose not to join a clinical trial now, you may find opportunities in the future that align with your needs and circumstances. To stay informed about Gilead’s HIV studies and explore your options, click here for more detailed information.

References

U.S. Department of Health and Human Services Office of Minority Health. HIV/AIDS and African Americans.

AidsVu. HIV in Black Communities.

Minority HIV/AIDS Fund. Impact on Racial and Ethnic Minorities.

Ojikutu BO, Mayer K. HIV Prevention Among Black Women in the US—Time for Multimodal Integrated Strategies. JAMA Netw Open. 2021;4(4)

Centers for Disease Control and Prevention. PrEP Is for Women.

Troutman J, Ingram LA, Gaddist B, Robillard A, & Qiao S. (2021). African American Women’s Current Knowledge, Perceptions, and Willingness of PrEP Use for HIV Prevention in the South. Journal of healthcare, science and the humanities. 2021;11(1), 51–72.

The post What Black Women Need to Know About HIV appeared first on Black Health Matters.

What is Multiple Myeloma?

To begin, we need to clear something up: We’re talking about Multiple Myeloma, not melanoma which are often mistaken for each other, but are very different. Melanoma is a skin cancer and myeloma is a type of blood cancer —and that’s our focus here. Myeloma is a blood cancer of the plasma cells that live in the bone marrow. Plasma cells normally make antibodies to help us fight infections. Myeloma cells are abnormal plasma cells. In Multiple Myeloma, these abnormal plasma cells can become cancerous and multiply, making it harder for our bodies to fight infection.

What are the Risk Factors for Multiple Myeloma?

The median age at diagnosis is 69 years. African Americans are younger at diagnosis by about 5 years compared to White patients. Interestingly enough, men are at a higher risk than women.

Genetics can be a factor:

Having a family history of the disease raises a person’s risk of developing Multiple Myeloma. If you have a sibling or parent with a Multiple Myeloma diagnosis, you are at an increased risk.

MGUS can be a factor:

In addition to family history, certain medical conditions can also elevate the risk. One such condition is MGUS—Monoclonal Gammopathy of Undetermined Significance—which involves the presence of an abnormal protein in the blood. Individuals diagnosed with MGUS may have a higher likelihood of developing Multiple Myeloma.

If you or someone you know is diagnosed with Multiple Myeloma, know your options.

How You Can Act: Know Your Options

Start by speaking with your healthcare provider about your personal risk factors and any available screening methods. Early conversations can help guide informed decisions.

Explore Clinical Research Opportunities

Participating in clinical research can provide access to cutting-edge research options and contribute to advancing care for others.

This communication is sponsored by Kite Pharma, A Gilead Company. Kite is committed to ensuring diverse representation in its clinical studies.

To learn more about Kite’s investigational efforts in treating Multiple Myeloma, visit: A Study Comparing Anitocabtagene Autoleucel to Standard of Care Therapy in Participants With Relapsed/ Refractory Multiple Myeloma (iMMagine-3).

Disclaimer: Clinical studies are investigational in nature. Participation is voluntary and there is no guarantee of benefit or specific outcomes. The safety and efficacy of the investigational treatments have not been established.

© 2025 Kite Pharma, Inc. All rights reserved. | VV-TMF-6286882 11/2025.
KITE is a trademark of Kite Pharma, Inc. GILEAD is a trademark of Gilead Sciences, Inc.

The post Hope & Healing: Myeloma News appeared first on Black Health Matters.

Why Your Participation Matters

Blood cancers are complex, and they can impact our community in unique ways. Black/African American patients have often been underrepresented in clinical research. This creates gaps in understanding the disease and treatments that we are working hard to close. By participating in clinical research, you can help change that – ensuring that future treatments are more equitable and inclusive in care.  This form of research paves the way for potential breakthroughs and personalized care.

A Commitment to Inclusivity and Access

At Kite, a Gilead Company, we are actively working to make participation easier and more inclusive – reducing barriers, helping every patient feel seen, respected, and empowered. We want you to feel welcome, heard, and valued every step of the way.

What You Can Expect

• Access to Cutting-Edge Research: Clinical research often provides investigational therapies that are not yet publicly available.
• Expert Oversight: Your care is closely monitored by a team of specialists who are deeply familiar with your type of cancer.
• Empowerment and Knowledge: Your participation may contribute valuable knowledge that supports the scientific community’s efforts to develop potentially safer, more effective treatments.
• Helping Others: Every participant contributes to medical progress, helping develop better care for people with the same or similar condition.

Be a Part of the Breakthrough

Choosing to participate in a clinical research study is a powerful way to contribute to cutting edge science.

Talk with your healthcare provider to learn if Clinical Research may be an option.

To learn more about how you can participate in one of Kite’s Clinical Trials for Blood Cancer, please visit Kite Clinical Trials.

This communication is sponsored by Kite Pharma, A Gilead Company. Kite is committed to ensuring diverse representation in its clinical studies.

Disclaimer: Clinical studies are investigational in nature. Participation is voluntary and there is no guarantee of benefit or specific outcomes. The safety and efficacy of the investigational treatments have not been established.

© 2025 Kite Pharma, Inc. All rights reserved. | VV-TMF-6286708 11/2025
KITE is a trademark of Kite Pharma, Inc. GILEAD is a trademark of Gilead Sciences, Inc.

The post Help Shape the Future of Blood Cancer Treatment appeared first on Black Health Matters.

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The post HIV in Focus: Living Positively appeared first on Black Health Matters.

Lipoproteins are tiny particles made up of lipids (fats) and proteins that travel in your bloodstream to cells in your body, carrying cholesterol (a type of fat). Some important types of lipoproteins are low-density lipoprotein (LDL-cholesterol), which is the “bad” cholesterol, high-density lipoprotein (HDL-cholesterol), known as the “good” cholesterol, and lipoprotein(a), also called Lp(a).

Each type of lipoprotein plays a unique role in your body and can have different effects on your heart health. Understanding these lipoproteins can help you maintain a healthy heart and prevent heart disease. In this article, we’ll break down the basics of elevated lipoprotein(a) and what it means for your heart.

What is Lipoprotein(a)?

Lipoprotein(a), also known as Lp(a), is a specific type of lipoprotein that carries cholesterol in the blood. What makes lipoprotein(a) unique from LDL-cholesterol or HDL-cholesterol is that it has a protein called apolipoprotein(a) attached to it.

The presence of high levels of Lp(a) in the blood has been linked to an increased risk of heart disease. Additionally, unlike LDL-cholesterol or HDL-cholesterol, an increased level of Lp(a) is genetic, meaning it is inherited from your parents.

Approximately 20% of people have an elevated Lp(a). It is estimated that there are 1.4 billion people worldwide with elevated Lp(a), which is twice the number of people with Type 2 diabetes.

Elevated Lp(a) and Heart Health

Similar to LDL cholesterol, elevated Lp(a) can negatively impact heart health. High levels can lead to the buildup of plaque (which includes fat and cholesterol) in the arteries, a condition known as atherosclerosis. This buildup restricts blood from flowing to vital organs like the heart, brain, kidneys, and lungs. Over time, this can be dangerous and result in an increased risk of heart disease, heart attacks, and strokes.

Four Facts about Elevated Lp(a)

1. Lp(a) is not included in your regular cholesterol lab panel. It is a separate test and most people have never had their levels checked before.
2. The higher your Lp(a) level is, the more likely you are to experience plaque buildup in your blood vessels. Lp(a) levels of 50 mg/dL (125 nmol/L) or greater are considered high.
3. Higher Lp(a) levels are associated with stiffening and narrowing of the aortic valve in the heart, making it more difficult for the heart to pump blood to the body.
4. Lp(a) levels are genetic, which means it is passed on to you by your parents. Even if you live a healthy lifestyle, it is still possible that your levels may be elevated if you have a family member with high Lp(a).

Understand Your Risk

Your Lp(a) levels are determined by your genes. Unlike LDL-cholesterol, lifestyle changes such as healthy eating and physical activity will not lower your levels. There is a blood test that can measure your Lp(a) levels. Your healthcare provider can determine if this test may be appropriate for you and order it if necessary. They can also help you understand your levels and your heart disease risk.

Researchers believe that lowering Lp(a) levels might lower the risk for heart disease, stroke, or peripheral artery disease. Click here to learn more about research clinical trials.

References:

• Centers for Disease Control and Prevention. Heart Disease Facts.
• Centers for Disease Control and Prevention. About Heart Disease.
• American College of Cardiology. Lipoprotein(a) in Clinical Practice
• National Library of Medicine. Lipoprotein(a): A Genetically Determined, Causal, and Prevalent Risk Factor for Atherosclerotic Cardiovascular Disease: A Scientific Statement From the American Heart Association
• Center for Disease Control and Prevention. Lipoprotein (a)

The post Lipoproteins 101: What Every African American Needs to Know About Heart Health appeared first on Black Health Matters.

Dr. Sara Collins is an Interventional Cardiologist in Bowie, Maryland.  She earned her undergraduate degree from Brown University and her medical degree from Meharry Medical College. She completed her Internal Medicine training at the University of Maryland Medical Center, Cardiology fellowship at Georgetown University/Medstar Washington Hospital Center, and Interventional Cardiology training at Medstar Washington Hospital Center.

Dr. Collins has been involved in research for over 25 years. Her research has included vaccine development, observational studies, clinical device investigations, and phase II through IV clinical pharmaceutical research. She founded the Capital Research Institute, which was created to conduct cardiovascular clinical trials in Washington, D.C.

Dr. Collins serves as a consultant for healthcare startups engaging in business and product development. She is an active member of the Association of Black Cardiologists and co-chairs their Health and Public Policy Committee.

Elevated Lipoprotein(a), often referred to as Lp(a), is a significant risk factor for heart disease. Dr. Sara Collins, interventional cardiologist and researcher, breaks down the importance of knowing your Lp(a) levels, understanding your risk, and keeping hope alive.

Dr. Collins is working to foster a racially diverse research community and aims to reduce health disparities by addressing the underrepresentation of minorities in clinical trials.

Know Your Levels

“There are many different types of cholesterol in our bodies. Some are worse than others. Lp(a) is one type of bad cholesterol,” said Collins. “Lp(a) levels are determined genetically, meaning they are inherited. The amount of lipoprotein(a) you have as a child will most likely be the level you have lifelong.” She emphasizes that Lp(a) levels can vary depending on race or ethnicity, and people of African descent tend to have the highest levels of Lp(a).

Lp(a) is measured with a simple blood test, but it is not a test that is usually done routinely. You may need to ask your healthcare provider whether this test is appropriate for you based on your risk, and request that this specific test be performed if so. At this time, the test does not need to be repeated as other cholesterol tests do; however, that may change once treatment options are available. Knowing your Lp(a) level is a major part of understanding your risk.

Understand Your Risk

Dr. Collins explains that Lp(a) differs from other types of cholesterol in that levels are not affected by changes in diet and exercise habits. Your Lp(a) may be high even if you live a healthy lifestyle. “Most of the patients that I diagnose with elevated Lp(a) also have some risk factors they can modify,” she stated, “Even if Lp(a) levels are elevated, you should still practice healthy lifestyle habits like healthy eating and exercising regularly.”

Doing so will still help decrease your overall risk and improve your heart health. “You don’t want to make things worse by eating a diet that’s high in saturated fat and not exercising,” said Collins. She notes that the primary risks of elevated Lp(a) include blood clots, inflammation, and plaque buildup.

Until therapies are approved to treat elevated Lp(a) levels, we must understand our personal and community risk so we can take action. Taking action may include evaluating your health history to determine your risk, adopting healthy lifestyle habits, or having your levels checked. Clinical trial participation is another practical step you can take if you have been diagnosed with elevated Lp(a) or are at risk for certain heart conditions such as heart disease, stroke, or peripheral artery disease.

Keep Hope Alive

“African Americans are overrepresented when it comes to the burden of heart disease, but none of the treatments that we use have been appropriately studied in us,” said Dr. Collins. “The mistrust when it comes to healthcare and clinical research is valid and it’s real, and we have to chip away at it.” How do we do that? One way is by participating in clinical trials.

Did you know that by participating in clinical trials, you can help researchers develop new treatment options? Minorities are often underrepresented in clinical research, despite having higher rates of conditions being studied. This makes participation a crucial, collective community effort that can improve our overall health in the long term and promote better health outcomes.

Dr. Collins encourages and advocates for minority participation in clinical trials.  She states, “When you enroll in a clinical trial, you’re in a very supported, safe, observed, and regulated clinical environment. Additionally, you’re not only doing a service to yourself, but you’re also doing a service to your community.”

The post Demystifying Elevated Lipoproteins: How They Impact Heart Health in African Americans appeared first on Black Health Matters.

Understanding Heart Issues

Heart issues, like heart attacks and strokes, are serious health problems. They can make you feel sick, but they can also go undetected until it is too late. Heart conditions can even be life-threatening if not treated or prevented.

Why Are African Americans at Higher Risk?

Several factors contribute to why African Americans are more prone to major heart issues. One major reason is high blood pressure, also known as hypertension. This is when the force of blood against your artery walls is too high. This may be caused by increased build-up of plaque (which includes fat and cholesterol) in your arteries. High blood pressure can damage your blood vessels and make your heart work harder, which increases your risk of heart attacks and strokes.

Lifestyle choices also play a role. Things like eating unhealthy foods, not getting enough exercise, and smoking can all raise your risk of heart issues. These lifestyle choices may increase the amount of plaque build-up in the arteries. Practicing healthy lifestyle habits like healthy eating and exercising regularly can only improve your heart health.

Access to quality healthcare is important too, but one of the major factors to consider is genetics because we cannot control it. Some research suggests that African Americans may be more likely to have certain genes that increase heart disease risk.

Elevated Lipoprotein(a)

If you have a high level of Lp(a), you may have an increased risk for heart disease, stroke, or peripheral artery disease. High Lp(a) can be present in people of all races and ethnicities but is much more common in the Black community. Click here to learn more about elevated Lp(a).

Your risk of having elevated Lp(a) is strongly related to whether or not your parents or other close relatives had elevated Lp(a). Lp(a) levels cannot currently be lowered with approved medications or lifestyle changes. You may benefit from having your Lp(a) levels checked if:

• You have a personal or family history of cardiovascular disease early in life
• Your cholesterol level is severely elevated (>190 mg/dL)

Discuss your health history with your healthcare provider to determine if Lp(a) testing is appropriate for you.

Take Action

African Americans are more prone to major heart issues because of a number of different factors. Some of those factors can be controlled or limited while others, like genetics, can’t. Being proactive and tackling the uncontrollable factors is an ideal way to take control of your heart health.

While you cannot change your genetics there is research suggesting that lowering the level of Lp(a) might lower the risk for heart disease, stroke, or peripheral artery disease. Click here to learn more about clinical research trials investigating Lp(a).

References:

• Centers for Disease Control and Prevention. Heart Disease Facts.
• Centers for Disease Control and Prevention. About Heart Disease.
• American College of Cardiology. Lipoprotein(a) in Clinical Practice
• National Library of Medicine. Lipoprotein(a): A Genetically Determined, Causal, and Prevalent Risk Factor for Atherosclerotic Cardiovascular Disease: A Scientific Statement From the American Heart Association
• Center for Disease Control and Prevention. Lipoprotein (a)

The post Unveiling the Factors: Why African Americans Are Prone to Major Heart Issues appeared first on Black Health Matters.

Did you know one person dies every 33 seconds in the United States (U.S.) from CVD? About 695,000 people in the U.S. died from heart disease in 2021—that’s 1 in every 5 deaths, costing the U.S. over $200 billion each year. This includes costs related to health care services, medicines, and lost productivity due to death.

These conditions do not equally affect all demographics and may particularly affect the African American community. This article will address the basics of cardiovascular disease, explore common conditions and risk factors, and shed light on their impact within the African American community.

What Is Atherosclerotic Cardiovascular Disease (ASCVD)?

CVD refers to disorders that affect the heart and blood vessels. One type of CVD is atherosclerotic CVD (ASCVD). This occurs when plaque, or fatty deposits, buildup on the walls of the blood vessels and decrease or block blood flow. Since blood vessels deliver blood to organs throughout the body, ASCVD may affect more than just the heart. For example, decreased blood flow to the brain could result in a stroke.

The buildup of plaque that leads to ASCVD is caused, in part, by LDL-cholesterol and lipoprotein(a), or Lp(a).

Common CVD Conditions and Risk Factors

The following conditions fall under the umbrella of cardiovascular disease:

• Coronary artery disease (most common), which causes heart attacks
• Peripheral artery disease – blockages in blood vessels in the legs
• Heart failure
• Heart rhythm problems
• Stroke

Various risk factors contribute to the development of cardiovascular disease such as:

• High blood pressure
• High cholesterol levels, including Lp(a)
• Smoking
• Diabetes
• Obesity
• Poor diet
• Genetics and family history

Impact on the African American Community

CVD disproportionately affects African Americans. This health disparity stems from a combination of genetics, social factors, and disparities in healthcare access and quality.

Several factors contribute to the increased prevalence of cardiovascular disease among African Americans. We have higher rates of hypertension, obesity, and diabetes which puts us at an increased risk of developing heart-related conditions.

African Americans may face barriers to receiving quality care, including bias from healthcare providers, lack of quality healthcare, and inadequate representation in clinical trials for cardiovascular treatments.

Major Adverse Cardiovascular Events (MACE)

MACE is an acronym used commonly by researchers. You may see this term while reading about clinical trials. Major cardiovascular events, such as heart attacks and strokes, have a profound impact on the African American community. Not only are African Americans more likely to experience these events, but they also face higher mortality rates and worse outcomes compared to other racial groups.

The aftermath of major cardiovascular events can be devastating for families, and the emotional toll of losing loved ones prematurely to heart disease is overwhelming.

Are you at Risk?

Many of the risk factors associated with CVD are controllable, but there are some risk factors that are not. Lp(a) is different from other types of cholesterol. Elevated levels are genetic, and neither taking cholesterol medication nor making lifestyle changes such as improving eating habits or increasing physical activity will help lower levels. [insert link to elevated lipoproteins 101 article]

Most people are not aware of their Lp(a) level, but it can be checked with a simple blood test if requested by your healthcare provider. Researchers believe that lowering Lp(a) might lower the risk for heart disease, stroke, or peripheral artery disease.

Clinical research studies are investigating CVDs and risk factors associated with them, including Lp(a). Click here to learn more.

References:

• Centers for Disease Control and Prevention. Heart Disease Facts.
• Centers for Disease Control and Prevention. About Heart Disease.
• American College of Cardiology. Lipoprotein(a) in Clinical Practice
• National Library of Medicine. Lipoprotein(a): A Genetically Determined, Causal, and Prevalent Risk Factor for Atherosclerotic Cardiovascular Disease: A Scientific Statement From the American Heart Association
• Center for Disease Control and Prevention. Lipoprotein (a)

The post What is cardiovascular disease? appeared first on Black Health Matters.

By focusing on six key areas, there are practical steps you can take to enhance brain health and improve mental well-being.

These pillars are essential for anyone looking to sustain and boost their brain health as they age. This article will explore each of the six pillars, providing valuable insights, actionable tips, and resources. Whether you’re already incorporating some of these strategies into your daily routine or looking for new ways to support your brain health, this guide will empower you to be intentional about “staying sharp” and supporting your brain health.

Be Social

Maintaining an active social life is something that can seem more difficult as we age. Engaging in social activities and maintaining social connections can boost your brain health. Making new friends and connections is great, but nurturing those relationships that already exist is beneficial and can help you maintain your social life. Engaging with friends and family not only brings joy and companionship but also helps stimulate the brain and promote brain health. Click here to learn more about how you can make and keep new friends and ease loneliness.

Engage Your Brain

This pillar involves feeding your curiosity, learning new things and exposing yourself to new situations. You can practice engaging your brain by keeping your mind active through various activities such as puzzles, learning new skills, reading, or playing musical instruments. Brain stimulation is an important component of brain health. Click here to learn more about action steps you can take to support brain health.

Manage Stress

Stress is an inevitable part of life, but how we manage it can make a significant difference in our brain health. Chronic stress can affect memory, brain function, and overall well-being. Learning and adapting effective stress management techniques such as decompression, meditation and movement is essential for maintaining brain health. Not only do these techniques promote brain health, but they also relieve tension, boost mood, and increase energy. Click here to learn more about how you can benefit from basic meditation, being present, and pursuing happiness.

Ongoing Exercise

Ongoing exercise is beneficial for physical health. It is also a key pillar for brain health. Engaging in exercises, whether it’s walking, yoga, swimming, or strength training, can significantly boost mental clarity and reduce the risk of cognitive decline. The Global Council on Brain Health recommends the following 150 minutes of weekly, moderate-intensity aerobic activity and two or more days a week of moderate-intensity, muscle-strengthening activities. Click here to learn more about activities such as cycling, yoga, and even walking can improve brain health.

Restorative Sleep

Restorative sleep is essential for maintaining our physical and mental well-being and a crucial component of brain health. A good night’s sleep allows the brain to repair and rejuvenate. You can work towards achieving restorative sleep by practicing sleep hygiene. Ways to do this include establishing a sleep routine, avoiding naps during the day, avoiding use of electronics right before bed, and creating a quiet and comfortable environment for sleep. Click here to learn more about restorative sleep, including why you shouldn’t sleep with your smartphone.

Eat Right

The foods we eat play a critical role in maintaining brain health, and a balanced diet can support brain function. There is no magic diet for your brain, but there are foods that can both help and hurt. Click here to learn more about the connection between nutrition and brain health, including food choices that support brain health, benefits of vitamin D, and recipe recommendations.

Ready to kick start your journey towards improved brain health? Click here to access your FREE cognitive assessment to see how you’re performing and learn more about how you can stay sharp.

Music has a positive impact on the health of our brains. Explore how music can promote your brain health. Click here to learn more.

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References

• Brain Health Resource Center

The post Staying Sharp: 6 Pillars of Brain Health appeared first on Black Health Matters.

Dr. Onwuemene is a board certified hematologist based in Durham, North Carolina. She specializes in bleeding and clotting disorders, including rare blood clotting disorders such as aTTP.

Thrombotic thrombocytopenic purpura (TTP) is a rare but life-threatening blood disorder that leads to the formation of small clots throughout the body. These clots can block blood flow to vital organs and cause significant damage.

TTP is a general term covering both acquired (aTTP/iTTP) and hereditary (hTTP) forms of the disease.

Please note that TTP, aTTP, and iTTP are acronyms used interchangeably for this condition. We will refer to it as aTTP throughout this article.

To shed light on the challenges surrounding this condition, we spoke with expert hematologist Dr. Oluwatoyosi A. Onwuemene who outlines the complexities of aTTP including the critical role of early diagnosis. This conversation serves as a powerful reminder that early recognition and treatment can save lives.

Black Health Matters: Could you tell us about your day to day practice and what you treat on a typical day.

Dr. Onwuemene: I primarily see patients in the inpatient setting via consults. I also primarily run a health services research program that’s looking at the big picture of how we care for patients with blood clotting disorders, including aTTP.

I don’t see aTTP as often as more common blood disorders like stroke since it is a rare condition. We probably see about 10 to 12 patients per year.

Black Health Matters: How would you identify someone who may have aTTP? What signs, symptoms or labs are you checking?

Dr. Onwuemene: People with aTTP generally feel very sick. Common symptoms may include fatigue, tiredness, headaches, abdominal pain, blood in the urine, bruising, and neurologic symptoms such as mental status changes. Heart attacks, strokes, and kidney damage may also occur.

People with aTTP typically have anemia, or low red blood cell counts, and very low platelet counts. The ADAMTS13 is the definitive test used to diagnose aTTP, but since it can take a while to get that result we would not want to delay therapy.

As we start treatment, the most important thing is waiting to see how well the platelets respond to treatment. That’s kind of the biggest sign that the person is improving and treatment is working.

Black Health Matters: Are there any groups or demographics you see more commonly with aTTP?

Dr. Onwuemene: The median age is forty-three. In general, 70% of people who are diagnosed will be women. When you look at the surrounding population and compare it to the patients we see, there is over representation of both women and African Americans

Black Health Matters: What are the current treatment guidelines for treating aTTP?

Dr. Onwuemene: The treatment that has really improved mortality the most is plasma exchange plus immunosuppression with high-dose steroids started as soon as possible. Therapeutic plasma exchange is a blood separation procedure where you’re removing plasma, which also has antibodies and you’re replacing the plasma with somebody else’s donated plasma.

Black Health Matters: What barriers to treatment or care do Black patients experience? How can we work to eliminate them?

Dr. Onwuemene: In my opinion, I think we see the most disparities with regard to time to diagnosis and the delay in diagnosis. Access to care may play a role in how much workup a person might get or what referral they’re given for the next level of evaluation. We don’t have the data to really help us understand those differences or make those distinctions.

The successful care of people with aTTP is a team sport, and the person with aTTP is really in the driver’s seat. As healthcare providers, we are partnering with them in that care. Everybody has a role to play to decrease disparities.

Black Health Matters: Any final thoughts or advice you’d like to share to encourage those living with aTTP?

Dr. Onwuemene: Education is key for anyone with aTTP and their supporters. Being educated helps you to have a strong voice to advocate more strongly and seek advocates that will partner with you.

Also connect with support groups. It’s powerful to come together with people who have a similar problem or challenge, and to be able to learn from how they are addressing it.

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The third Saturday in September is recognized as International TTP Day. Visit the websites below to learn more about aTTP, find a support group, and explore resources.

Click here to learn more about aTTP from a patient’s perspective.

The Ree Wynn Foundation

The United States Thrombotic Microangiopathy Alliance (USTMA)

Answering TTP Foundation

The post Raising Awareness of aTTP in the African American Community, a Provider’s Perspective appeared first on Black Health Matters.

Anise was diagnosed with aTTP in 2018, and is deeply committed to advocating for awareness and better care for those affected by aTTP by promoting health equity.

Living with acquired thrombotic thrombocytopenic purpura (aTTP) is a journey. For many, including Anise Banks, the path to diagnosis can be complicated and overwhelming. In this interview, Anise highlights her personal story as a patient and advocate who has bravely navigated the challenges of living with aTTP.

Her insights shed light on how to embrace the journey, advocate for yourself or a loved one living with aTTP, and the importance of education.

Please note that TTP, aTTP, and iTTP are acronyms used interchangeably for this condition. We will refer to it as aTTP throughout this article.

Black Health Matters: Can you share your personal journey with aTTP from initial symptoms to diagnosis?

Anise: I experienced bruising, headaches, fatigue, and changes to my mental state. My symptoms went on for about one month before I was accurately diagnosed and treated during an emergency room visit. I had a stroke there prior to starting treatment, but because my mom was there she handled everything when I physically was unable to advocate for myself.

Black Health Matters: What were some of the challenges you faced during the diagnostic process?

Anise: The top challenges were the frustration of not getting answers and having to go back and forth to the emergency room week after week. Nobody knew what was going on, but I knew I wasn’t well. I felt like I knew I was dying.

Black Health Matters: Do you think having your mom’s support during that crucial time made a difference in your outcome?

Anise: I do. I feel like my outcome would have been bleak if my mother wasn’t there to be my advocate to speak up for me. I tear up every single time I share this, but my mom really stepped in to tell the doctors what was going on and what was needed. Her strength in advocating for me, I think, played a major part in saving my life.

It’s so important to have an advocate. It can be a friend, family member, spouse, or partner. Anyone that’s close to you and knows you well enough to speak on your behalf.

I suggest preparing an advance directive so if something happens and you are not able to speak for yourself, the doctors and healthcare officials have a guide to follow.

Black Health Matters: What is your day to day like now living with aTTP?

Anise: I’m in remission and want to keep it that way. It’s taken me six years to get here. I still have anxiety, depression, and cognitive issues from what I’ve gone through, but now when I go to the doctor they tell me I’m good and they’ll see me in six months.

Black Health Matters: Can you share more about your aTTP advocacy work?

Anise: During my journey with aTTP my faith got me through. I knew if God got me through I was going to spread awareness. It started out as just me just sharing my story using the aTTP hashtag on social media which led to me being asked to share with larger groups.

Black Health Matters: How do you think healthcare providers can improve the care and support they offer to aTTP patients?

Anise: Healthcare providers could partner with a liaison like a community health worker to help educate patients and empower them to advocate for themselves. It’s just not all on the doctor. It takes a joint effort to make sure that we all come together to have the opportunity to improve our health.

Black Health Matters: Any final thoughts or advice you’d like to share to encourage those newly diagnosed or living with aTTP?

Anise: Educate yourself, join a support group, and find a therapist. Support groups can be helpful in learning how to advocate for yourself and knowing what questions to ask. A therapist can help you cope with the mental impact of living with a rare disease.

I’d also like to give my spin on aTTP and what it really stands for. It stands for trust the process, trust the progress, and take the power. Thrive towards prosperity because there’s life after this diagnosis.

The third Saturday in September is recognized as International TTP Day. Visit the websites below to learn more about aTTP, find a support group, and explore resources.

Click here to learn more about aTTP from a provider’s perspective.

The Ree Wynn Foundation

The United States Thrombotic Microangiopathy Alliance (USTMA)

Answering TTP Foundation

The post Raising Awareness of aTTP in the African American Community: a Patient’s Perspective 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.

Sydney became an advocate to dispel the stigma that lung cancer is a smoker’s disease. She wants to increase awareness about the need for more lung cancer research, get rid of the stigma, and obtain research funding on the same level as breast, ovarian and other women’s cancers to educate others that lung cancer kills more people than those cancers combined.

Dr. Barned is a lung cancer survivor turned advocate. Her story from diagnosis to advocacy is one of honesty and unwavering hope. Through her personal experiences and powerful insights, she sheds light on the challenges and triumphs she faced throughout her lung cancer journey.

Black Health Matters: First, tell us a bit about how you were diagnosed with lung cancer and what that experience was like for you.

Dr. Barned: So, in February 2016, I realized that I was having some shortness of breath with my exercise routines. I have always been very active in various activities, so when I noticed that my exercise tolerance was diminished and I was struggling during my 5K runs, I knew something was wrong. I went and got an x-ray and was initially diagnosed with walking pneumonia.

I later started experiencing a chronic cough, so I decided to see a lung specialist (pulmonologist). The x-ray was repeated, and it had improved but was still abnormal. I was then diagnosed with hyperactive airway disease and prescribed a steroid. My symptoms continued to worsen so I saw a different pulmonologist. I completed another x-ray and requested a CT scan which showed a mass that was compressing my airway.

After doing biopsies, bronchoscopies, and various other tests, I was diagnosed with stage 4 lung cancer. As a physician who was active, had never smoked, and was pretty obnoxious about telling people to stop smoking because of the risk of lung cancer, the irony was shocking.

Black Health Matters: Can you share more about your advocacy work?

Dr. Barned: I have dedicated myself to educating others on the fact that anyone with lungs can get lung cancer, and that if you have certain risk factors to request screening for lung cancer. Understanding the criteria is something that we need to encourage the public to do and to make sure that if they have certain risk factors or present with certain symptoms that they need to insist that they get the test necessary to make sure that lung cancer is not caught in its later stages.

Black Health Matters: What’s one piece of advice you would share with someone who is considering requesting additional testing?

Dr. Barned: Early detection is very curative. The earlier the cancer is detected, the earlier you can begin treatment.

Black Health Matters: Thank you for sharing your story. Any final thoughts?

Dr. Barned: Though lung cancer survival rates are much lower at later stages, getting diagnosed at stage 4 is one of the reasons why lung cancer advocacy is so important to me. I’m so happy to be a source of education and to tell my story.

Want to learn more about non-small cell lung cancer clinical trials? Visit here to learn more.

The post Championing Change: Physician and Lung Cancer Advocate Shares Personal Story 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.

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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.

 Black Community: Insights into the APOL1 Gene

Presented by:

Dr. Stacy A. Johnson

Sponsored by Vertex

Dr. Stacy A. Johnson addressed an engaged crowd on kidney disease, a subject “near and dear” to her heart. As the Medical Director of Vertex Pharmaceuticals, Johnson helps develop innovative treatments using research. According to a study published by Johns Hopkins in 2020, “Black Americans experience kidney failure at three times the rate of whites.” Dr. Johnson explained what kidneys are, their desired function, ways to identify that they have been compromised, and potential genetic components of kidney issues that could disproportionately impact Black people.

What are the kidneys?

Dr. Johnson explained that the organs provide important functions in the body. “They work twenty-four hours a day, seven days a week, every day to filter and clean your blood,” she said. “The kidneys get rid of excess fluid, they get rid of excess waste, they help balance electrolytes.”

The doctor’s presentation helped the audience understand what the organs look like and how they fit into the body’s systems. She described one portion of the organ as a sort of tennis racket. “Think of that as a filter,” she said. “You want a filter because your blood contains things you want to keep and other things you want to get rid of. So you can’t just have a structure that lets everything out.”

What are some of the symptoms of kidney disease?

“Sometimes the kidneys get damaged, and when they don’t work properly, you start to see some signs that you can tell that the kidneys are not working properly,” she said. Fatigue and perceived weight gain can be signs. “So one of the signs that the kidney is not working properly is accumulation of excess fluid. This might show up as swelling in your legs. It may even show up as high blood pressure because your kidneys are not removing extra salt. Then, the other thing that happens is that when that tennis racket-looking filter gets damaged, it can no longer do its job properly. So instead of keeping the good stuff like protein inside your body, it spills the protein into the urine, which is not what you want.”

Kidney disease is progressive, meaning it accelerates. “It progresses. Eventually, it can get to the point where you need to have dialysis or a kidney transplant to survive,” said the doctor.

How common is kidney disease?

Dr. Johnson revealed how common kidney disease is. “The CDC estimates that approximately one in seven adults has chronic kidney disease,” she told the audience. She acknowledged that the disease can be lying dormant, threatening unsuspecting sufferers. “The dangerous thing is that of the people, of the 37 million or so adults who have chronic kidney disease in the US, nine out of ten of them don’t even know they have it.” She shared conditions that can lead to kidney disease, including diabetes, high blood pressure, and auto-immune diseases.

What kind of research is being done on kidney disease in the Black community?

Dr. Johnson shared insights into the research on the APOL1 Gene. She outlined risk variants. “Among African-Americans, the people who had the most severe type of kidney disease actually also had these changes in their DNA,” she said.

How You Can Take Action:

The session provided valuable tips for preserving your kidney health.

•  Pay attention! Inspect changes in your body so you can accurately describe them to your doctor.
• Learn about the therapies available. If you are experiencing kidney issues, do not assume that only one treatment works for you.
• Ask your healthcare provider about the research on the APOL1 Gene and what you need to know.

The post Understanding Genetic Kidney Disease: Insights on the APOL-1 Gene appeared first on Black Health Matters.

If you have been diagnosed with type 2 diabetes, it is important that you take your diagnosis seriously. With proper management, it can be controlled by making healthy lifestyle choices and working closely with your healthcare provider. Managing your diabetes can also help reduce your risk of developing complications.

The key to successfully managing your type 2 diabetes is understanding the facts. Being informed is a first step to taking control of your health. Once you understand the facts, you can be proactive about dispelling myths surrounding the condition and feel inspired to take action.

Lilly is also working to help you take control of your health through clinical trial participation. Click here to learn more.

Fact or Fiction

Continue reading to review some common type 2 diabetes myths and facts.

MYTH: I will have diabetes because several people in my family have it and there’s nothing I can do about it.

FACT: While having a family history of diabetes does increase your risk of developing the condition, it is not the only contributing factor. It does not guarantee that you will automatically have diabetes. The development of type 2 diabetes can be influenced by a combination of genetics and lifestyle. Even though you can’t control your genetics, you can control your lifestyle.

MYTH: If I have excess weight, it is only a matter of time before I develop type 2 diabetes.

FACT: Having excess weight is among the strongest risk factors for type 2 diabetes. The more excess weight you carry, the higher your risk. While having excess weight is another risk factor of diabetes, it is not the only contributor. This risk also varies among individuals which is why some people with excess weight never develop diabetes and others who are at a healthy weight do.

MYTH: I have not experienced any symptoms so my blood sugars must be normal.

FACT: High blood sugar levels can occur without notable symptoms especially in the early ages. On the other hand, some people do experience symptoms. High blood sugar levels can still contribute to long term damage, even if you aren’t experiencing symptoms.

Common symptoms of high blood sugar include:

• Increased thirst
• Increased hunger
• Frequent urination
• Unexplained tiredness
• Unexplained weight loss

MYTH: I have to stick to a specific diet in order to manage diabetes.

FACT: There is not a one-size-fits-all diet for people living with diabetes. It is most important to make healthy food choices, and it’s recommended that you follow a meal plan that is specific to your health needs and lifestyle. Key components for managing your diet include carbohydrate management, portion control, and consistency.

MYTH: I don’t need to take medication to manage my diabetes.

FACT: There are several factors that determine whether you will need to take medication to manage your diabetes. Lifestyle changes can be highly effective in managing the condition. While some people are able to successfully manage their condition without medication, others may require multiple medications and that’s okay.

Remember that your type 2 diabetes journey is unique. You should discuss with your healthcare provider whether or not medications are needed. Work with your care team to adjust your treatment plan based on your specific needs and goals.

References

• National Library of Medicine. Diabetes myths and facts
• American Diabetes Association. Know Your Facts About Diabetes
• Debunking type 2 diabetes misconceptions

The post Is Type 2 Diabetes Manageable? Dispelling the Myths appeared first on Black Health Matters.

Type 2 diabetes disproportionately impacts the Black community. African Americans are 60% more likely to be diagnosed with the condition and at least twice as likely to be hospitalized and experience long-term complications including death, when compared to non-Hispanic whites

Factors that may contribute to this health disparity include genetics, socioeconomic factors, and access to quality healthcare. Prevention and management are key factors to reduce the impact of type 2 diabetes among African Americans and improve outcomes.

You can navigate your type 2 diabetes diagnosis by understanding the risks and making informed choices. There are several adverse health consequences of type 2 diabetes but many of them may be preventable.

Uncontrolled Type 2 Diabetes

In general, type 2 diabetes control is evaluated by measuring routine blood sugar readings. Blood sugar goals may vary slightly based on patient-specific factors such as age and presence of other health problems. There are two ranges for blood sugar goals.

• Fasting (before meal): 80-130 mg/dL
• After a meal (2 hours): less than 180 mg/dL

The A1c test is a blood test that is used to measure the 3-month average of your blood sugars. It is used to provide additional insight into diabetes control. A1c is expressed as a percentage with a recommended A1c target of < 7% for most people with diabetes.

Consequences of Uncontrolled Type 2 Diabetes

If left uncontrolled, type 2 diabetes can result in long term consequences over time. These health risks involve various parts of the body and can greatly impact quality of life and overall health.

Long-term complications of uncontrolled type 2 diabetes include:

Heart problems

Heart disease is the most fatal complication associated with type 2 diabetes. People living with diabetes are two times more likely to have a stroke or heart disease than people who don’t have diabetes. Symptoms of heart disease include shortness of breath, tiredness, chest pain, and numbness in your arms or legs. You can maintain your heart health by managing your diabetes.

Kidney damage

Diabetes is the leading cause of kidney damage resulting in chronic kidney disease (CKD). Our kidneys serve as blood filters for our bodies. High blood sugar levels can be present in uncontrolled type 2 diabetes and cause the kidneys to have to work harder, diminishing their function and causing damage long term.  CKD often develops slowly, and it may be difficult to identify symptoms of kidney disease until it’s too late. You can prevent kidney disease by keeping your blood sugar at goal.

Nerve damage

Nerve damage affects nearly 50% of people living with type 2 diabetes. The most common type is peripheral neuropathy which impacts nerves in the hands, feet, legs, and arms. Symptoms include tingling, pain, increased sensitivity, or numbness of the affected area. Controlling your blood sugar is the best way to prevent nerve damage. You should also have foot exams completed routinely and help identify issues proactively.

Vision issues

Diabetes can damage your eyes over time. It is the leading cause of new cases of blindness in adults 18-64 years of age. People of color are at higher risk of going blind due to diabetes complications. While there aren’t any signs or symptoms to monitor for, you can be proactive by completing an annual eye exam to monitor for eye disease and delay vision loss.

Mental health

Living with diabetes and managing your condition can come with an overload of different emotions. You may feel anxious, worried, discouraged, and frustrated. Address mental health concerns with your health care provider and consider speaking with a therapist or counselor if needed

Take Control

You can lower your risk of diabetes-related complications by making healthy lifestyle changes, monitoring your readings regularly and working to keep them at goal, taking your medications as prescribed, and following up with your doctor regularly. Medication therapy plays a major role in lowering your risk, especially for those at high risk or who have prediabetes.

Take control of your health and avoid the consequences of type 2 diabetes through informed choices, regular checkups, taking your medications, and committing to a healthy lifestyle.

Lilly is also working to help you take control of your health through clinical trial participation. Click here to learn more.

References

• American Diabetes Association. Statistics About Diabetes
• United States Department of Health and Human Services Office of Minority Health. Diabetes and African Americans
• Centers for Disease Control and Prevention. Manage Blood Sugar
• American Diabetes Association. Diabetes Complications
• Centers for Disease Control and Prevention. Diabetes and Mental Health

The post Avoiding Consequences of Type 2 Diabetes appeared first on Black Health Matters.

A family history of diabetes is usually influenced by genetics. Certain genes can influence insulin resistance, beta-cell function, and glucose metabolism, which are all key factors in type 2 diabetes development. Understanding the link between family history and type 2 diabetes is important. It highlights the role of genetics and provides an opportunity for early detection and prevention.

Do you come from a family where multiple generations have dealt with this condition? It may have started with your family, but it can end with you. Lifestyle changes have been shown to prevent or delay the onset of type 2 diabetes, even if you have a family history of the disease. You can take charge of your health and make informed choices to reduce your risk.

Understanding the Connection

Genetics and family history impact the development of type 2 diabetes in different ways.

• You may inherit genes that increase your risk.
• You may have gene changes that contribute to insulin resistance, a key factor of type 2 diabetes.
• Genetic factors may affect insulin-producing cells in the pancreas.
• Families not only share genes but also lifestyle and environmental factors such as eating habits and physical activity that can also contribute to diabetes risk.

What we know about the genetic component of type 2 diabetes is constantly evolving.

Assessing Your Risk

Diabetes risk is influenced by a combination of factors, including genetics, family history, and lifestyle. You can assess your risk by collecting information about your family’s health history and determining which relatives in your family, if any, have diabetes.

Genetics and family history can increase your risk, but they do not guarantee you will develop diabetes. By assessing your risk and making informed choices, you can take proactive steps to reduce your risk of developing diabetes or manage the condition effectively.

Consider taking the American Diabetes Association’s type 2 risk test. You should also seek guidance from your healthcare team to help further assess your risk and develop an action plan.

Reducing Your Risk

By maintaining a healthy weight, adopting a balanced diet rich in whole foods, staying physically active, and completing regular health checkups, you can lessen the influence of genetic and family history factors.

A family history of diabetes increases the risk but does not guarantee the development of type 2 diabetes. Always seek medical guidance when it comes to managing your diabetes, even with lifestyle improvements.

With the right knowledge and lifestyle choices, you can begin your journey towards a healthier future.

Lilly is also working to help you take control of your health through clinical trial participation. Click here to learn more.

References

• Type 2 Diabetes: All in the Family?
• Family Health History and Diabetes
• Medline. Type 2 Diabetes
• American Diabetes Association. Hyperglycemia (High Blood Glucose)

The post The Link Between Family History and Type 2 Diabetes appeared first on Black Health Matters.

Anthony Anderson is a paid spokesperson for Novo Nordisk and this article is sponsored by Novo Nordisk.

Can you tell us about your experience with type 2 diabetes?
I was first diagnosed at age 29. I was familiar with the symptoms, such as excessive thirst and frequent bathroom trips,¹ but one night, no matter how hard I tried to quench my thirst, I couldn’t. That’s when I knew something was going on. I went to see my doctor and after tests showed my glucose level was off the charts, I was diagnosed with type 2 diabetes. It was a reality check. Immediately I thought, okay, where did I go wrong? What did I do that led to this? What do I do now? At first, I went on medication and followed a plan, but looking back, I didn’t take the disease too seriously. I was the first person in my family to be diagnosed with type 2 diabetes, followed by my mother, Mama Doris, and, finally, the father who raised me.

What did you do after you were diagnosed?
I made a lifestyle change, starting with being conscious about my health, getting fit, and listening to my healthcare professionals. No matter what your lifestyle is like, prioritizing healthy eating and exercise takes a lot—but you can also start small and go from there. At first, I took the stairs instead of the elevator. I walked around my neighborhood and ate healthy foods, but also took the advice of my doctor to enjoy things in moderation before phasing them out of my diet. Over time, it made a difference. I’ve learned there’s no secret to type 2 diabetes—you’re either managing it, or it’s hurting you.

How did you “get real” about your diabetes?
My diagnosis made me think back to my childhood. I remembered things about my dad’s life: the late-night bathroom breaks, the midday sleeping and being lethargic. I realized he had diabetes my entire life and had never been diagnosed. Ultimately, we lost him to cardiovascular disease. It wasn’t until his death that we learned he had been living with type 2 diabetes all this time, completely unmanaged. It was a tragic loss and made me think, “I don’t want to do that to my family. I don’t want to become a statistic.” That’s when I got real about managing my type 2 diabetes.

What do you want people to know about type 2 diabetes and its associated risks?
Most importantly, learn what puts you at risk of getting type 2 diabetes. This includes family history, obesity, age, whether you live an active lifestyle or are part of a high-risk ethnic group, like me as a Black man.¹
My doctor told me that having type 2 diabetes also puts you at increased risk of CKD and experiencing a major cardiovascular event like stroke, heart attack, or death^2-4 Cardiovascular disease is the leading cause of death in people living with type 2 diabetes.⁷ On top of that, about 40% of people with type 2 diabetes live with CKD,⁸ yet nearly 90% of adults with CKD don’t even know they have it.⁹

Since your diagnosis, what were you most surprised to learn about the impact of the disease?
As a Black man, I felt especially surprised to learn that certain ethnic groups are considered high-risk. The Black community is disproportionately impacted by type 2 diabetes and the risks associated with it. ^5,6 Black Americans are more than three times as likely as White Americans to have kidney failure¹⁰ and six times more likely than White Americans to get kidney failure from their high blood pressure.¹¹ It’s scary stuff.

As someone living with type 2 diabetes, are there other long-term effects you have discussed with your doctor?
Yes. I’ve learned that, if not managed over time, high blood sugar can cause harm to your heart and kidneys.¹² The longer you have type 2 diabetes, high blood pressure or heart disease, the more likely you are to have kidney damage.¹³ It’s all connected, but there are ways to lower the risks and by educating yourself, and talking to your doctor, you’ve already taken the first step!

To anyone who has type 2 diabetes or knows someone who does, what would you tell them?
Get proactive and GET REAL! Talk to a healthcare professional to learn the risks for yourself and share them with your family or community—someone might be pre-diabetic or going through the same things. Living with type 2 diabetes and managing it successfully is a daily commitment that’s worth it. I always say, I’d rather live with this disease than die from it. It’s up to each of us to understand type 2 diabetes and associated risks, get the information we need and talk to our family members.
If you or someone you know is living with or at risk of type 2 diabetes, it’s time to get real about the link between type 2 diabetes, CKD and CVD. Talk to your healthcare professional about ways to manage your risks, including testing and treating early, managing your blood pressure and understanding genetic factors.
To learn more about type 2 diabetes, the increased risk of CKD and CVD, or to help you get real about your diabetes, visit www.GetRealAboutDiabetes.com.

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References:
1. Cleveland Clinic. Type 2 Diabetes. Accessed October 8, 2024.
https://my.clevelandclinic.org/health/diseases/21501-type-2-diabetes.
2. American Diabetes Association. Cardiovascular disease and diabetes. Accessed September 18, 2024. https://diabetes.org/about-diabetes/complications/cardiovascular-disease.
3. de Boer IH, Rue TC, Hall YN, et al. Temporal trends in the prevalence of diabetic kidney disease in the United States. JAMA. 2011;305:2532-2539.
4. Kidney Disease: Improving Global Outcomes (KDIGO) Diabetes Work Group. KDIGO 2020 clinical practice guideline for diabetes management in chronic kidney disease. Kidney Int. 2020;98:S1–S115. Published May 15, 2020. Accessed June 24, 2024.
5. Saab KR., Kendrick J, Yracheta JM, Lanaspa M A, Pollard M, Johnson R J. New insights on the risk for cardiovascular disease in African Americans: the role of added sugars. J Am Soc Nephrol.,2015;26(2):247–257. DOI:10.1681/ASN.2014040393
6. Osayande A. Assessing the relationship between racism in medicine, medical mistrust and cardiovascular disease among Black American adults. (2024). Electronic Theses and Dissertations. Paper 4355. https://doi.org/10.18297/etd/4355
7. American Heart Association. Target: type 2 diabetes. Accessed September 18, 2024. https://www.heart.org/en/professional/quality-improvement/target-type-2-diabetes/.
8. Feng XS, Farej R, Dean BB, et al. CKD prevalence among patients with and without type 2 diabetes: regional differences in the United States. Kidney Med. 2021;4(1):100385.doi:10.1016/j.xkme.2021.09.003
9. Centers for Disease Control and Prevention. Chronic kidney disease in the United States, 2023.Accessed October 4, 2024. https://www.cdc.gov/kidney-disease/php/data-research/index.html.
10. National Kidney Foundation. Race, ethnicity, & kidney disease. Published January 7, 2016. https://www.kidney.org/atoz/content/minorities-KD#:~:text=Black%20or%20African%20Americans%20are%20more%20than%203.
11. American Kidney Fund (AKF). Race/ethnicity – kidney disease risk factors. Published October 29, 2021. www.kidneyfund.org. https://www.kidneyfund.org/all-about-kidneys/risk-factors/raceethnicity-kidney-disease-risk-factors.
12. National Kidney Foundation. Diabetes and kidney disease (stages 1-4). Accessed July 2, 2024. https://www.kidney.org/atoz/content/Diabetes-and-Kidney-Disease-Stages1-4
13. National Institute of Diabetes and Digestive and Kidney Diseases. Diabetic kidney disease. Accessed June 24, 2024. https://www.niddk.nih.gov/health- information/diabetes/overview/preventing-problems/diabetic-kidney- disease#:~:text=The%20A1C%20goal%20for%20many,check%20your%20blood%20glucose%20levels.

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The post Q&A with Anthony Anderson: “I Got Real About my Type 2 Diabetes—and I Never Looked Back” appeared first on Black Health Matters.

Prediabetes occurs when your blood sugar levels are elevated, but not high enough to be considered type 2 diabetes. It serves as a warning sign that you should begin taking action to avoid potential long-term consequences of uncontrolled blood sugar such as heart, kidney, nerve, and eye issues to name a few If you have prediabetes, taking action today for a healthier lifestyle may help prevent or delay type 2 diabetes. The National Diabetes Prevention Program aims to help people at higher risk of developing type 2 diabetes lower their risk.

As prediabetes progresses, the pancreas (responsible for releasing insulin) may struggle to keep up with the demand of managing rising blood sugar levels which can lead to the development of type 2 diabetes. The hormone insulin plays an important role in regulating the amount of sugar in your blood. It allows the cells to then use this sugar as an energy source, or it can be stored for later use. Living with prediabetes presents an opportunity to take control of your health and prevent disease progression.

Preventing Type 2 Diabetes

Adapting your lifestyle while living with type 2 diabetes is a necessity. The good news is that prediabetes can be managed by making meaningful changes to reduce your risk of developing type 2 diabetes.

Awareness

Prediabetes awareness is an important part of preventing type 2 diabetes. Being aware that you have the condition presents the opportunity to be proactive and make positive lifestyle changes.

Prediabetes can easily go undetected as there are no clear symptoms.  Some risk factors that may put you at a higher risk of developing prediabetes include carrying excess weight, your age (45 or older), having an immediate relative with type 2 diabetes, a personal history of gestational diabetes, and a personal history of polycystic ovary syndrome (PCOS). Gestational diabetes is a type of diabetes that occurs during pregnancy, and PCOS is a common hormonal disorder that affects women during their reproductive years.

People of color including African Americans are also at a higher risk. If any of these risk factors apply to you or if you have concerns regarding your blood sugar, speak with your doctor to address your concerns and have your blood sugar levels monitored.

Lifestyle Changes

Lose weight: Losing even a small amount of weight (about 10 pounds) can reduce blood pressure in many overweight people. It may even prevent high blood pressure.

Increase physical activity: Try to get 30 minutes of physical activity at least 5 days each week or as recommended by your healthcare provider. Limit the amount of time you spend sitting down to less than 90 minutes at any one time.

Follow healthy eating habits. What you eat can affect your entire body, including your heart, brain, skin and bones. Your body needs healthy food to be at its best. Eating smaller portions, drinking more water, and adding more fruits and vegetables are all ways for you to eat healthier

To learn what the right amounts are for you, try the personalized MyPlate Plan at https://www.myplate.gov/myplate-plan

Prevention is Possible

Diabetes can affect many parts of your body. When blood sugar stays high, your eyes, heart, kidneys, and nerves can be harmed. Taking good care of yourself today may help you avoid problems in the future.

Lilly is also working to improve outcomes in patients with prediabetes click here to learn more.

References

• National Institute of Diabetes and Digestive and Kidney Diseases. Diabetes Statistics
• Prediabetes – Your Chance to Prevent Type 2 Diabetes
• What you need to know about prediabetes
• Diabetes and your health: Caring for your heart while managing diabetes
• Making healthy food choices
• National Institute of Diabetes and Digestive and Kidney Diseases. Preventing Type 2 Diabetes
• Dietary Guidelines for Americans 2020 – 2025, Dietary Guidelines for Americans, 2020-2025
• How diabetes can affect your body

The post Type 2 Diabetes Prevention: Adapting Your Lifestyle While Living With Prediabetes appeared first on Black Health Matters.

Prepare for Appointments

Prior to your appointment:

• Write down any questions or concerns you’d like to address to ensure that you don’t forget. This will also allow you to focus on topics that are important to you.
• Your provider will likely assess your symptoms at each visit. Let them know if there is anything you have tried that has made your symptoms better or worse. This includes over the counter oral and topical medications.
• Aim to be as detailed and specific as possible.
• Be prepared to discuss which parts of your body and how much of your body is affected by lesions, what symptoms you are currently experiencing (pain, itching, redness, etc.), and if you have identified any triggers.

Be open and honest

Follow up appointments allow your provider to monitor your progress and make necessary adjustments. Nothing should be off limits with your provider. Follow up visits are time for you to be honest about how you’re doing and provide feedback. Your feedback can help your care team make informed treatment decisions.

This is the time to be transparent about what you feel is working for you as well as any challenges you are facing. This is also a great time to make your provider aware of any side effects you are experiencing. Any mental or emotional challenges should also be discussed.

Collaborate in Decision Making

Managing your psoriasis should be a joint effort between you and your care team. Your treatment plan should align with your lifestyle and goals. Discuss your current treatment plan, goals and preferences.

If the process seems overwhelming, bring a trusted individual such as a family member or friend that will speak up and advocate for you.

Ask questions and seek clarification

If something is unclear, ask for clarification. If you still don’t understand, ask for additional resources that will enhance your understanding. There are many layers to living with psoriasis.

Helpful questions to ask include:

• Psoriasis is associated with several comorbidities such as heart disease. Am I being monitored for these?
• Are there any lifestyle or dietary changes that may improve my symptoms?
• There are surveys that assess quality of life in patients with psoriasis. Should I take one?
• Are there any risks associated with my current treatment plan?
• I know there is no cure for psoriasis, but at what point should I be concerned that my symptoms aren’t improving?
• I am not responding well to my current treatment, what other treatment options are available?
• Do I qualify for any ongoing clinical trials for psoriasis?

If you or someone you know has been diagnosed with plaque psoriasis and would like to learn more about an ongoing clinical trial the LATITUDE study.

References

• Health and quality of life outcomes. Quality of life in patients with psoriasis.
• Singapore Medical Journal. Management of psoriasis in primary care.

The post 4 Healthcare Provider Tips: A Discussion Guide for Patients Living with Psoriasis appeared first on Black Health Matters.

This lifelong condition is characterized by the presentation of itchy plaques on the skin’s surface. Psoriasis can be classified as mild, moderate, and severe disease.The majority of cases are classified as mild to moderate. Plaques can appear anywhere on the skin but appear most commonly on the abdomen and midsection, scalp, hands, feet, elbows, and knees. Plaques are patches of skin covered in white or silver colored scales that vary in size and are round in shape. The peak ages of onset are between 20-30 years of age and 50-60 years of age. Men and women are affected equally. Psoriasis is not contagious.

While psoriasis is less prevalent in African Americans than Caucasians, it is underdiagnosed in African Americans and people of color. This may be because psoriasis is easier to identify on lighter skin tones. Patients with psoriasis have a higher risk of developing heart disease and risk factors such as diabetes, obesity, high cholesterol, and high blood pressure, conditions which disproportionately impact African Americans.

Symptoms

Symptoms of plaque psoriasis may vary from person to person.

Some common symptoms of plaque psoriasis may include:

• Itching
• Burning
• Soreness
• Pain and discomfort associated with cracking and bleeding of the skin
• Nail changes

There may also be bleeding if a scale is removed. You may also notice that plaques appear to be equally distributed in a mirror-image or symmetrical fashion on various parts of the body such as the knees and elbows.

Causes and Triggers

The exact cause of plaque psoriasis is not completely understood. It is believed to be caused by a combination of genetic and environmental factors. If you have an immediate family member with plaque psoriasis, you are more likely to get it. There are several other risk factors associated with plaque psoriasis. Avoiding triggers may help reduce and manage symptoms. Other risk factors include:

• Stress
• Infection
• Use of certain medications
• Skin injuries
• Dry, cold weather
• Tobacco use
• Heavy alcohol use

Diagnosis

Plaque psoriasis can be difficult to diagnose and is typically established by physical examination. Your doctor may examine your skin and assess your symptoms. A skin biopsy is not required but may help your provider rule out other conditions.

Treatment

Plaque psoriasis is a chronic condition that requires long term treatment. There is no definitive cure, but the main goal of treatment is to manage symptoms and improve quality of life.

A 2014 survey revealed that close to 50% of patients with psoriasis had not been seen by a healthcare provider in the past year. Many were either not taking prescription medications or only using a topical treatment. This gap in care highlights the importance of furthering clinical research to study the safety and efficacy of potential new therapies to treat the condition.

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

References

• Kimmel, G. W., & Lebwohl, M. (2018). Psoriasis: Overview and Diagnosis. Evidence-Based Psoriasis: Diagnosis and Treatment
• National Psoriasis Foundation. Psoriasis Statistics
• American Journal of Managed Care. Psoriasis and Psoriatic Arthritis Overview
• American Academy of Dermatology Association. What Is Psoriasis?
• Dermatology and Therapy. Clinical Goals and Barriers to Effective Psoriasis Care
• Psoriasis: Diagnosis, Treatment, and Steps to Take

The post All About Plaque Psoriasis: What You Need to Know appeared first on Black Health Matters.

Psoriasis typically appears in the form of red plaques covered in white or silver colored scales. This may appear differently on individuals with darker skin. Data from a national study revealed that African Americans are more likely to have undiagnosed psoriasis. Awareness of symptoms and what to look for can help lessen the likelihood of a missed or delayed diagnosis and equip you to better manage the condition.

Variations in Presentation

On fair or light skin, psoriasis looks red covered with silver scales. In African Americans, psoriasis often presents as more of a purple or violet color. On darker skin tones, it may present as a darker brown color which can be difficult to recognize.  Plaques may also be thicker and have more scales, impact larger areas of the body, and may be misdiagnosed as dark patches rather than active flares.

Key Considerations

Key considerations when evaluating psoriasis in skin of color include:

• Lesions may appear more pigmented rather than red in color
• Possibility of increased area of involvement when compared to lighter skin
• Temporary discoloration may occur at the site once psoriasis clears
• Dyspigmentation is a common occurrence and concern
• Physical symptoms of other conditions may be similar to psoriasis

Challenges in Diagnosis

There are challenges that exist when diagnosing psoriasis in skin of color. A recent study revealed that when compared to white patients, patients with darker skin tones may wait up to 3 times longer to receive a psoriasis diagnosis and can be 4 times as likely to require a biopsy to confirm diagnosis.

Receiving an appropriate diagnosis is the first step to moving forward with access to treatment options. It may be beneficial to follow up with a dermatologist who is a person of color or  specializes in treating skin of color. It is important that you advocate for yourself and ensure you are comfortable expressing your concerns to your provider.

Treatment considerations

Psoriasis treatment is the same regardless of skin color. Because patients of color with psoriasis may experience more severe disease and thicker plaques, more aggressive treatment may be necessary.

Patients with darker skin should also use caution when utilizing phototherapy as a treatment option due to the increased risk of changes in skin color of the affected areas. If you are living with scalp psoriasis, your provider may recommend treatment that includes daily use of medicated shampoo. If daily hair washing is not part of your usual routine, communicate your concerns with your provider. Communication is key to ensure your treatment plan works best for you.

Resources and Support

Regardless of skin tone, patients of all races living with psoriasis face various challenges. You are not alone in your journey.

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

References

• The Journal of Clinical and Aesthetic Dermatology. Psoriasis in Skin of Color: Epidemiology, Genetics, Clinical Presentation, and Treatment Nuances
• Journal of the American Academy of Dermatology. The prevalence of previously diagnosed and undiagnosed psoriasis in US adults: Results from NHANES 2003–2004
• American Academy of Dermatology Association. Can You Get Psoriasis if You Have Skin of Color?
• National Psoriasis Foundation. Skin of Color Resource Center
• Racial Disparities in the Diagnosis of Psoriasis

The post Psoriasis in Skin of Color: Know the Signs appeared first on Black Health Matters.

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

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

The process of CAR T-cell therapy

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

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

Cell collection

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

Cell creation

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

Cell infusion

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

Cell activation

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

Cell expansion

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

Learn more about this process here.

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

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

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

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

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

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

Hope for the future

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

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References

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

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

Similar Conditions

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

Cutaneous lupus erythematosus (CLE)

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

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

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

Hypertrophic lichen planus

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

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

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

Cutaneous T-cell lymphoma (CTCL)

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

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

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

Sarcoidosis

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

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

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

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

References

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

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

CAR T-cell therapy

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

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

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

Treatment for newly diagnosed disease

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

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

Maintenance therapy

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

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

Looking forward

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

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

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References

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

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

Ideal caregiver criteria includes dependable family or friends over the age of 18 who can commit to the time requirements and are healthy and not exhibiting any signs of infection. An ideal caregiver should also be able to connect with the patient on an emotional level in order to better support them throughout the treatment process.

CAR T-cell therapy can be a life-changing cancer treatment. Your support as a caregiver will significantly impact your loved ones recovery. You should consult with the healthcare team for guidance and recommendations specific to your loved one’s care. Educating yourself about CAR T-cell therapy and What is CAR T-cell is a great place to begin your caregiver journey.

Caregiver Tasks

Being a caregiver encompasses a wide range of tasks and responsibilities. The ultimate goal is to provide care and support during a vulnerable time in your loved one’s health journey. Caregiver tasks can vary, so being flexible is a must. It is also important to be patient, empathetic, and committed to the person you are caring for.

Common caregiver responsibilities include:

• Communicating with the healthcare team
• Advocating for your loved one
• Providing encouragement and emotional support
• Helping with daily tasks such as preparing meals, providing transportation, and helping around the house
• Assisting with managing medications
• Monitoring symptoms and side effects
• Ensuring adequate nutrition and hydration

Caregiver Challenges

Being a caregiver is a rewarding experience, but it does come with its challenges. The demand of being a caregiver while managing your own life can lead to stress and burnout.

You may be challenged emotionally as you walk with your loved one during their treatment. You may be challenged mentally as you may feel isolated. You may be challenged physically as you handle stress and the pressure of day to day responsibilities. As a caregiver, you must proactively seek support to help you navigate this new journey and promote well-being.

Caring for Yourself

You must take care of yourself.

Practical ways to prioritize self care:

• Set boundaries. It’s okay to take breaks and say no.
• Delegate tasks. Don’t be afraid to ask for help from others.
• Develop a self-care routine. Whether it’s a monthly massage or taking a few minutes each day to meditate.
• Prioritize sleep. Lack of sleep can lead to burnout. Aim to get adequate rest each night.
• Consider counseling or therapy. Talking to a professional can help manage stress and anxiety.
• Connect with a support group. Joining a caregiver support group can help you connect with others who are on a similar journey.

Being a caregiver is a role filled with love and sacrifice. As a caregiver it’s important to remember that taking care of yourself is an important part of ensuring you are able to care for others.

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References

• Centers for Disease Control and Prevention. Caregiving for Family and Friends – A Public Health Issue
• Centers for Disease Control and Prevention. Caring for Yourself When Caring for Another
• American Association of Retired Persons. Valuing the Invaluable 2023
• American Cancer Society. Caregivers and Family

The post A Caregiver’s Guide to CAR T-Cell Therapy appeared first on Black Health Matters.

CAR T-cell therapy must be completed at specialized treatment centers, and you must meet specific requirements in order to gain access to treatment. African Americans are less likely than other ethnic groups to receive CAR T-cell therapy. If you are considering this therapy option, increasing your knowledge of CAR T-cell therapy can help you navigate the process.

Identifying a Caregiver

If you are preparing to receive CAR T-cell therapy, you may be required to designate a caregiver beforehand. Your caregiver should be someone close to you such as a friend or family member. They should be able to commit to being with you full time during the entire therapy process including your time in the hospital and also after discharge as you recover. You may need more than one caregiver. Caregivers can help with daily tasks, managing your medications, coordinating your health care, and advocating for you.

Selecting the right caregiver for CAR T-cell therapy is a critical decision. Your caregiver’s involvement and support can significantly impact your experience and outcome. Open and honest communication with your caregiver is essential to ensure you both are comfortable throughout the treatment process.

What to Expect

Treatment Process

The process of developing CAR T-cell therapy is complex and precise. Understanding the treatment process can help you feel more engaged in your treatment and help you know what to expect. Click here [link back to BHM What is CAR T-cell therapy?] for an overview of CAR T-cell therapy.

Prior to receiving therapy, you’ll consult with the care team at a treatment facility. This visit will include a health assessment and introduction to the health care team. Once approved to receive treatment, your blood will be drawn in order to collect your T cells and create CAR T-cells. This process can take a few weeks.

While you wait, you’ll receive chemotherapy for a few days. This helps to prepare your body for your CAR T-cell infusion by creating an environment where the cells can grow and expand. You’ll have time to rest after chemotherapy and prior to receiving the CAR T-cell infusion.

On the day of the infusion, you will likely spend more time preparing for the infusion than actually receiving it. The infusion itself is a relatively quick process. After the infusion and for the next several weeks, your care team will continue to follow up with you and monitor closely for side effects. Your caregiver will play a key role in side effect monitoring.

Click here to learn more about how you can prepare to receive CAR T-cell therapy.

Potential Side Effect Challenges

Side effect monitoring is a key aspect of receiving CAR T-cell therapy. Side effects can vary from patient to patient but can be serious or life-threatening. Serious side effects your care team will monitor for include:

Cytokine release syndrome (CRS) is one of the most common side effects of therapy and is characterized by symptoms such as fever and chills, trouble breathing, muscle and joint pain, fatigue, and decreased appetite.

Neurotoxicity is another serious side effect that impacts the nervous system and causes confusion, mental state changes, and seizures.

Other side effects to monitor for include infusion reactions, increased infection risk, blood count changes, and lab abnormalities.

Learn more about side effects.

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References

• Transplantation and Cellular Therapy. Socioeconomic and Racial Disparity in Chimeric Antigen Receptor T Cell Therapy Access
• Journal of the Advanced Practitioner in Oncology. Educating Multidisciplinary Care Teams, Patients, and Caregivers on CAR T-Cell Therapy
• Quality of life in caregivers of patients receiving chimeric antigen receptor T-cell therapy
• Biology of Blood and Marrow Transplantation. Building a CAR Garage: Preparing for the delivery of commercial CAR T products at Memorial Sloan Kettering Cancer Center
• American Cancer Society. CAR T-cell Therapy and Its Side Effects

The post Preparing for CAR T-cell Therapy: What to Expect appeared first on Black Health Matters.

In addition to understanding your condition, advocating for yourself also involves navigating the healthcare system, seeking support, and educating others. Living with psoriasis can be challenging, but taking control of your health and well being is an empowering journey.

Find the Right Provider

Because psoriasis is a long-term, chronic condition, you should feel comfortable with the healthcare providers who will be helping you manage the condition. Finding the right providers who understand the condition and offer the support and treatment needed is a crucial step in your psoriasis journey.

Dermatologists specialize in skin conditions including psoriasis. Consulting a dermatologist who has extensive experience treating patients with psoriasis can be beneficial. If you are a person of color, it may be beneficial to follow up with a dermatologist who is also a person of color or who specializes in treating skin of color. It is important to ensure that you are comfortable expressing your concerns to your provider. If you are having trouble finding a provider, consider asking family and friends for recommendations. You may also want to consult your primary care provider who can refer you to a dermatologist they trust.

You should feel comfortable communicating your concerns with your health care team. Your provider should be willing to answer your questions, provide clear explanations, and be open to discussing your treatment plan. If you don’t feel that your provider respects your feelings and concerns or if you are having doubts, it’s okay to seek a second opinion.

Advocating for yourself includes feeling confident with the care you are receiving.

Recognize Symptoms

Advocating for yourself when it comes to recognizing and managing the symptoms of psoriasis is a very important part of ensuring you receive the best possible care and improving your quality of life.

Here are some tips on how to advocate for yourself and recognize the symptoms of psoriasis:

• Familiarize yourself with the common symptoms of psoriasis. Common symptoms include: red, scale covered plaques on the skin, itching, burning, or soreness in affected areas, and changes in the appearance of your nails.
• Regularly examine your skin for any new lesions or changes to existing lesions. Pay close attention to your elbows, knees, and scalp as these are commonly affected areas.
• Keep a written record of your symptoms. Documenting when you notice symptoms and any notable triggers can be very useful for not only yourself but your healthcare team.

Make Self-Care a Priority

Research suggests that stress associated with living with psoriasis can lead to anxiety and depression. Your mental health matters and it is important that you make self-care a priority to help minimize stress. You are not on this journey alone and help is available. Consider joining a support group. Having a strong support system can help you learn more about coping with your diagnosis and feel supported on your journey.

You can incorporate self-care into your daily routine by practicing stress reduction techniques such as deep breathing or yoga, being patient with yourself, and advocating for your needs.

Consider a Clinical Trial

Clinical trial participation is another practical way you can advocate for yourself and others living with psoriasis. If you or someone you know has been diagnosed with plaque psoriasis learn more about the LATITUDE study.

• Indian Dermatology Online Journal. General measures and quality of life issues in psoriasis
• Psoriasis: Diagnosis, Treatment, and Steps to Take

The Journal of clinical and Aesthetic Dermatology. Psoriasis and Associated Psychiatric Disorders: A Systematic Review on Etiopathogenesis and Clinical Correlation.

The post Living with Psoriasis: Advocating for Yourself 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.

Click here to learn more about an ongoing clinical trial, determine if you are eligible, and do your part to advance estrogen receptor positive (ER+) and human epidermal receptor 2 negative (HER2-) breast cancer research.

Hormones and Receptors

Hormones and receptors play an important role in adjuvant endocrine therapy. The majority of breast cancer diagnoses are either estrogen or progesterone receptor positive. These two hormones are the key components of cancer formation and you will likely hear these terms used frequently.

Estrogen and progesterone receptors are found on the surface of breast cancer cells. When hormones attach to the receptors, cancer cells can grow and divide. Breast cancers that have a high number of estrogen receptors are labeled as estrogen receptor-positive (ER-positive), and cancers with a high number of progesterone receptors are called progesterone receptor-positive (PR-positive). At least 65% of all breast cancers are specifically classified as ER+/HER2-.

The link between hormones and adjuvant endocrine therapy is fundamental to understanding how this treatment approach works in breast cancer treatment.

What is adjuvant therapy?

Adjuvant therapy is additional treatment that is given after your initial or primary therapy such as surgery. There are several different types of adjuvant therapies, and they are commonly used when treating breast cancer. Some examples include chemotherapy, immunotherapy, radiation therapy, targeted therapy, and hormone (or endocrine) therapy. The main goal of adjuvant therapy is to increase the effectiveness of the primary therapy and reduce the risk of the cancer returning by targeting any remaining cancer cells that were not destroyed by the primary treatment.

What is adjuvant endocrine therapy?

Adjuvant endocrine therapy is often referred to as hormone therapy. Hormone therapy for breast cancer is different from hormone therapy used to treat menopausal symptoms. Endocrine therapy for breast cancer is used in patients with hormone receptor-positive breast cancer. It works by targeting hormones in the body, lowering estrogen levels, and stopping cancer growth. It is not effective against hormone receptor-negative cancers. Adjuvant hormone therapy for breast cancer may look different depending on the type of cancer you have.

In women with ER+/HER2- breast cancer, adjuvant endocrine therapy is a key aspect of treatment. Adjuvant endocrine therapy can be given for many years after surgery to reduce the risk of cancer coming back. Research suggests that when adjuvant hormone therapy is initiated after surgery, there is a lower risk of cancer coming back, or new cancer developing somewhere else in the body.

If you have been diagnosed with breast cancer, it is important that you work closely with your healthcare team to determine the most appropriate therapy and treatment plan.

Impact in Black Women

Disparities in breast cancer outcomes exist among different racial and ethnic groups. Breast cancer is the leading cause of cancer-related death among Black women. While breast cancer rates are higher in White women, survival rates are lower in Black women. Black women are more likely to delay breast cancer treatment including adjuvant endocrine therapy which may play a role in these rates. You can eliminate disparities in breast cancer treatment by communicating your concerns with your healthcare provider and considering clinical trial participation.

If you have been diagnosed with early-stage ER+/HER2- breast cancer and have already had surgery to treat the breast cancer, click here to learn more about whether a clinical trial for endocrine therapy may be an option for you.

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References

• American Cancer Society Journals. CA: A Cancer Journal for Clinicians. Cancer statistics, 2023.
• American Cancer Society. Hormone Therapy for Breast Cancer
• Endocrine therapy for breast cancer in the primary care setting. Curr Oncol. 2018 Aug; 25(4): 285–291.Published online 2018 Aug 14.
• American Cancer Society. Breast Cancer Hormone Receptor Status
• National Cancer Institute. Hormone Therapy for Breast Cancer
• American Cancer Society Journals. CA: A Cancer Journal for Clinicians. Systemic therapy for hormone receptor-positive/human epidermal growth factor receptor 2-negative early stage and metastatic breast cancer
• Racial disparities in breast cancer diagnosis and treatment by hormone receptor and HER2 status. Cancer Epidemiol Biomarkers Prev.

This article is sponsored by Lilly.

The post Adjuvant Endocrine Therapy for Breast Cancer: What You Need to Know 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.

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

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

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

“Do your research.”

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

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

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

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

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

“Get a second opinion.”

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

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

“Advocate for yourself.”

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

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

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

*        *        *        *

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

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

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

Real patient compensated for sharing her experience.

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

The Impact of Food Deserts

As a community, chronic diseases hit us the hardest. Research shows that several chronic conditions, including obesity, diabetes, and high blood pressure, disproportionately impact African Americans. We already know structural racism and racial bias are reasons why these health disparities exist. In addition, socio-economic factors that affect many Black Americans, such as lack of quality insurance and safe spaces to exercise, cannot be overlooked.

But we must remember how living in food deserts impacts our health. According to a report by McKinsey, one out of 5 Black households is in a food desert, with fewer grocery stores, farmer’s markets, and restaurants offering healthy options. For some of us, convenience stores and fast-food restaurants are the closest options. Yet, we are still expected to spend nearly $340 billion on food by 2030.

Black consumers want offerings that are culturally relevant and convenient, facilitate healthy habits, demonstrate good value for the price, and allow them to experience new foods.

Despite these challenges, it is possible to live a healthy lifestyle and break free from these race-related stigmas. An excellent place to start is knowing about the healthy numbers we need to work towards, whether we are striving to prevent a chronic disease or manage one.

High Blood Sugar (Hyperglycemia)

High blood sugar occurs when too much glucose, or sugar, is in the blood. If left untreated, high blood sugar can lead to type 2 diabetes over time. It can also lead to severe complications, including eye, kidney, and nerve damage. African Americans are at higher risk for developing high blood sugar.

Symptoms may not always be present when blood sugar is high. Some signs of high blood sugar include frequent urination and increased thirst. You may experience tiredness, confusion, nausea, vomiting, and stomach pain in severe cases. If you have concerns about your blood sugar, your provider can check your levels by conducting a simple blood test.

There is a common misconception that eating too much sugar causes diabetes.

While consuming sugary foods and drinks is unhealthy and can play a role, there are other contributing factors. The biggest problem with a poor diet is that it contributes to weight gain. Excess weight contributes to high blood sugar. Losing weight helps the body maintain healthy blood sugar levels and lowers the risk of complications.

However, our blood sugar goals may vary based on specific factors. The American Diabetes Association recommends that patients with diabetes aim for an A1c goal of < 7%. Blood sugars should stay between 80 and 130 mg/dL before meals and less than 180 mg/dL 1 to 2 hours after eating.

If you do not have diabetes, you should aim for an A1c of < 5.7%, and fasting blood sugars should be around 100 mg/dL.

High Blood Pressure (Hypertension)

High blood pressure occurs when the force of blood in your blood vessels is too high. This often results in your heart working much harder to do its job. If left untreated, high blood pressure can cause damage to your arteries. It can also lead to other conditions such as heart disease, stroke, heart failure, kidney disease, and sexual dysfunction.

High blood pressure is commonly referred to as a ‘silent killer’ because you may feel perfectly fine and not have any symptoms. When symptoms are present, they may include headache, chest pain, shortness of breath, and vision changes.

The best way to prevent long-term damage is to know your numbers. If you don’t have a blood pressure monitor, consider investing in one. Or ask a friend or family member to use theirs. Most pharmacies offer free blood pressure checks, and you can usually stop by your provider’s office to have your blood pressure checked without an appointment, but be sure to call ahead to confirm.

A blood pressure of 120/80 or lower is considered normal. If you have been diagnosed with hypertension, aim for a blood pressure goal of less than 130/80.

How Weight Factors In

There is a connection between being overweight and being diagnosed with hyperglycemia and hypertension. However, embarking on lifestyle changes that result in 5-10% weight loss may set us on the path to being healthier.

Dr. Holly Lofton, Clinical Associate Professor of Surgery and Medicine at the NYU Grossman School of Medicine, states that losing weight can also improve conditions such as prediabetes, high cholesterol, acid reflux, specific liver disease, and osteoarthritis.

“Even a 5% weight loss can be significant,” states Dr. Lofton, “However, there are specific weight loss goals depending on the condition.”

• 5-10% weight loss is recommended to prevent prediabetes from becoming diabetes
• 5-15% weight loss is recommended to reduce the severity of diabetes, high cholesterol, and high blood pressure
• At least a 10% weight loss is associated with reduced acid reflux symptoms
• 5-10% weight loss is recommended to improve physical function with osteoarthritis
• 7-10% weight loss is recommended to improve the fatty tissue present in liver cells of patients with liver disease, which is a risk factor for heart disease and many types of cancer

“I encourage anyone who feels that losing weight is intimidating to talk to your doctor,” says Dr. Lofton. She emphasizes that having percentage goals such as the ones listed above and aiming for smaller weight loss goals is attainable by making small changes that can lead to improved health.

Supported by an educational grant from Novo Nordisk Inc. 

The post How Do Health Numbers Connect to Weight and Overall Health? appeared first on Black Health Matters.

There is some debate within our community about whether BMI is an appropriate assessment tool, especially for Black patients. One reason is it does not factor in individual body type or whether or not there is extra fat or muscle. It also doesn’t consider other important factors such as age, race, or gender. But the controversy surrounding BMI aside, obesity is a chronic condition many of us are living with.

The U.S. Department of Health Office of Minority Health reports that African-American women have the highest rate of obesity, with 4 out of 5 of us considered overweight or obese.

Sometimes, even when we try dieting and exercising, this condition does not go away quickly. To better understand this concept, consider two siblings who grew up in the same environment. One eats sweets and junk food but can’t seem to gain weight, and the other is physically active and plays sports but can’t seem to lose weight. By societal standards, this shouldn’t be the case. But while environmental and genetic factors contribute to obesity, they don’t explain the entire story.

What Do Hormones Have to Do With It?

The fight is only sometimes against food. Hormones can strongly impact our ability to lose weight and maintain weight loss. Our brain regulates hunger by encouraging us to eat to store energy (which is why we feel hungry) and to feel full (so our bodies can burn energy). There are also some specific hormones related to other health conditions that can contribute to weight gain.

Dr. Holly Lofton, Clinical Associate Professor of Surgery and Medicine at the NYU Grossman School of Medicine, breaks down these specific hormones and how they may contribute to weight gain.

Thyroid Hormone

Hypothyroidism is an underlying condition that contributes to weight gain. This does not mean that someone with hypothyroidism can’t lose weight, but getting your thyroid levels treated with medication can treat the problem and no longer contribute to obesity. For any period you are not treated and thyroid levels are not regulated, you may be prone to weight gain.

Insulin

Insulin is a naturally occurring hormone produced by our bodies, and it can also be introduced to our bodies when taken as a medication. When our body produces too much insulin, insulin resistance can occur. Insulin resistance happens before prediabetes is recognized. The presence of excess insulin in the body can result in weight gain.

Cortisol

A small organ above the kidneys produces cortisol called the adrenal gland. It sounds similar to cortisone, which is a steroid. When someone has extra cortisol or takes steroids (cortisone or prednisone) for a medical condition, the size of the fat cells may increase and cause weight gain.

Estrogens

Estrogens are female hormones. Levels can fluctuate throughout different phases of life.

During menopause, estrogen levels can decrease and cause weight gain due to increased fat storage.

Some hormonal birth control methods can also lead to weight gain due to a change in the levels of female hormones in the body.

“Correcting the underlying issue may or may not result in weight loss,” Dr. Lofton says, “but it can be a good starting point and can help determine if medications may be needed, as they often are, to make fat cells smaller.”

Dr. Lofton recommends speaking with your provider or a hormone specialist about additional testing and further workup to rule out these conditions.

Make a Plan

Because obesity is a chronic condition, it should be treated as such. We wouldn’t tell someone with cancer or high blood pressure to wait it out before they seek treatment. Obesity is no different. If you think hormones may be a contributing factor for you, take these practical steps:

1. Collaborate with your healthcare team to develop a plan to manage obesity as a health condition.

2. Inquire whether blood tests to check your thyroid, insulin, cortisol, and estrogen levels may be appropriate.

3. Talk to your provider about all the weight management options available.

Supported by an educational grant from Novo Nordisk Inc. 

The post How Hormones May Impact Your Weight appeared first on Black Health Matters.

Black Americans are at a significant disadvantage when it comes to kidney failure and trying to find a donor. In this session, Dr. Feyikemi Osundina, Director of US Patient Advocacy at Sanofi, outlines the Black community’s challenges regarding kidney transplants and ways to overcome them. And Patient Advocates share their transplant experiences.

Educating yourself on the issues involved is an essential first step. But more than half of our community, 57%, don’t fully understand basic health information. A variety of factors have contributed to this, including a lack of trust in the system due to historical mistreatment, uncertainty about how to communicate with doctors, and cultural barriers that may prevent you from speaking out.

What is Kidney Disease?

The American Kidney Fund reports that 37 million Americans are living with kidney disease. Of those, 807,000 are living with kidney failure. (That means they can no longer filter waste products from your blood). This is a permanent, irreversible condition that requires dialysis.

• Symptoms of kidney failure include:
• Weight loss and poor appetite
• Swollen ankles, feet, or hands – as a result of water retention (edema)
• Shortness of breath
• Tiredness
• Blood in your urine
• Increased need to pee – particularly at night
• Difficulty sleeping (insomnia)
• Itchy skin
• Muscle cramps
• Feeling sick
• Headaches
• Erectile dysfunction in men

A kidney transplant is necessary for people who are in the end stage of renal disease (ESRD). So, it is likely that you know someone who has either had a kidney transplant or needs one. But, if you think that you may be at risk for kidney disease, you should contact your physician immediately. The earlier it is detected, the better your chances are of stopping it from progressing to kidney failure.

A Kidney Transplant May Have Risks

Nerve damage. While 95% of transplanted kidneys are still functioning a year after the procedure, there may still be risks involved with the procedure. According to the National Health Service, 5 out of every 100 patients suffer nerve damage during the procedure. The nerves around the wound, or front of the thigh of the kidney transplant, are usually the ones that are damaged. However, there is a possibility that it will heal on its own.

Heart problems. Following the procedure, a blockage in the blood supply to the heart can occur. If you have a history of heart issues, talk to your physician about having your heart function assessed before you are added to the transplant list.

Blood sugar management. If you have been diagnosed with diabetes before a transplant, there is a possibility that your blood sugar will be more difficult to control after the procedure. If this happens, work with your physician to make any necessary medication adjustments.

It is Difficult For Us to Find Living Donors

Our community is at a severe disadvantage when it comes to successfully finding a kidney donor. There are over 100,000 people on the waitlist to receive a kidney transplant, and 30% of them are black. Despite the overwhelming number of black Americans who are on the waitlist for a kidney transplant, we are six times less likely to receive a transplant from a living donor. Outsourcing for a kidney transplant will require some self-advocating. Some ways to advocate for yourself include switching doctors and getting second or third opinions.

We are six times less likely to receive a transplant from a living donor.

The Transplant Experience

Most people are hesitant about becoming a kidney donor. It is a significant surgery to remove one of your body’s vital organs. However, the procedure does have a 95% success rate. The chances of a malfunction during the procedure are extremely rare.

As with all major operations, there is a recovery period involved after the transplant. But Reggie, one of the patient advocates on the panel who became a donor, said the process is almost seamless.

“As far as recovery, it is usually just a mild soreness. I took pain medicine the day after surgery, but after that, I just weaned myself off of it. You feel fatigued for about a week,” Reggie said. “After that, I started feeling normal in about a week or two. I was out four weeks before I went back to work.”

Reggie donated his kidney to his wife, Alana. It was her second transplant after her brother donated his to her when she was still a teenager. Though it was not easy needing to have a second procedure as an adult, Alana says it was worth it.

“After my transplant, I was able to move the way I like to move, travel, and get back to my catering business.”

“One of the promises I made with my husband, with the kidney transplant, was that we would have another baby. Our kids are 16 years apart, but our daughter will be five this month. We had a healthy baby girl. Mommy is healthy after my second kidney transplant. So, living life on your terms is possible.”

This session was presented by Sanofi.

The Panelists:

Feyikemi Osundina, PharmD, MS

Alana H, Patient Advocate

Reggie C, Patient Advocate

The post Living Life Beyond Dialysis: What You Should Know About Living Donor Kidney Transplant appeared first on Black Health Matters.

Denise N. Bronner, PhD Director Diversity, Equity and Inclusion at Jansen, and JoBaris D. Swain, MD, MPH Medical Executive, Cardiovascular & MetabolismJanssen Scientific Affairs, ILC of Johnson & Johnson discussed the need for “True Representation In Cardio Research” at the 2023 Black Health Matters Summit. They were introduced by actor and producer James Pickens (Grey’s Anatomy). According to a study published by the National Kidney Foundation, “rates for African Americans remained 20% higher for heart disease and 40% higher for stroke.”

Another study published by the U.S. Department of Health and Human Services found that “African Americans were 30 percent more likely to die from heart disease than non-Hispanic whites.”

How has a lack of accurate representation in cardio research impacted the Black community?

“Representation is very important,” said Dr. Swain, noting that biological differences are not accounted for when studies are not diverse. Dr. Bronner shared how crucial it is for Black people to be considered in the planning phases of treatment development. She declared that exclusion from the baseline can result in disparities in “efficacy” and “effectiveness.” “The only time that we get included is when the drug has already been approved,” she said. “That’s when you start to see the adverse events or side effects starting to come.” Inclusion at that stage precludes preventive safety measures in some instances. “Things could have been identified if we were being pulled into the study,” she continued. Dr. Swain remarked on the lack of available training materials for diagnosing psoriasis on Black skin. Studies have found that this chronic and complex autoimmune disease is associated with many cardio patients. According to Cureus, “Many studies have shown an increased risk of cardiovascular morbidity in patients with psoriasis.”

What are some myths associated with cardio care?

“Many of us have probably heard that cardiovascular disease only happens in old people, and a lot of times, you know, when you go to certain screening events, they’ll, you know, start looking at people 65 and older. However, we’ve now learned that cardiovascular disease can affect individuals of all ages, even children, so we have to be mindful of our activity, diet, and exercise,” he continued.

“A second myth that often we have is that if I don’t have symptoms, I have a healthy heart,” said Dr. Swain, who described witnessing the sudden onset of severe symptoms during a telehealth session.

“We have patients who come into the emergency department, and they’ve been completely healthy in their mind. They’ve not had chest pain or any other side effects or symptoms, and all of a sudden, they come in, and they may have gone and had their blood pressure checked. Then they start having chest pain, and then they realize that they’ve had a full-on myocardial infarction, and often it comes as a complete surprise,” Dr. Swain continued. The older man clutching his left arm in sudden distress is the troupe most people are familiar with when they think of a heart attack. But that popular image is not the whole story of how cardio events occur.

“We often think that men are the only ones who have cardiovascular disease, and we understand men often are at greater risk, but cardiovascular disease affects men and women,” said Dr. Swain.

He revealed that these events in women can be associated with jaw pain. They can also appear to be “asymptomatic or atypical.”

Swain pointed out how cultural norms can convince Black women to ignore symptoms that might be their overall cardio health. “As a culture, you know, we grow up with aches and pains, and it’s straightforward for us to say, oh, I woke up like this, and kind of, you know, write it off as something that’s a part of our natural everyday experience.

Take Action!

• The session provided valuable and practical tips for managing your cardiovascular health.
• Take control by educating yourself and others about cardiovascular issues.
• Familiarize yourself with the myths associated with cardio so you can fight misinformation
•  Don’t assume the ache or pain you are feeling is normal.

As Dr. Swain said, “If you feel something, say something.” Start the conversation. Ask the questions. Listen to your body. Contact your healthcare provider and fight for your cardiovascular health.

This session was presented by Janssen

The Panelists: Denise N. Bronner, PhD Director Diversity, Equity, and Inclusion in Clinical Trials – Immunology Portfolio Jansen

JoBaris D. Swain, MD, MPH Medical Executive, Cardiovascular & Metabolism Janssen Scientific Affairs, LLC of Johnson & Johnson

The post Healing Hearts: True Representation in Cardio Research appeared first on Black Health Matters.

Learn about the triggers and symptoms of this uncomfortable yet misdiagnosed condition in Black and Brown communities.

Sponsored by Regeneron

The post Black Skin Myths Busted appeared first on Black Health Matters.

Sanjay S. Shukla, M.D., M.S. President and CEO aTyr Pharma, Chidinma Chime-Melton MD, MBA, FCCP, CPHQ, Assistant Professor of Medicine, UCLA, and Andrea Wilson, a sarcoidosis patient and advocate, discussed the fight against sarcoidosis at the Fall Black Health Summit.

How does sarcoidosis impact the Black community?

“What is really striking here, though, is that it’s so prevalent in our community,” said Dr. Chime-Melton. She cited the alarming statistics about the disease. “In the African-American community, it’s three times as common, so if you’re looking at the epidemiology of it, they tell you, oh sarcoidosis is about 10 in 100,000 patients will have it but within our community, it’s 34 In 100,00 patients. So, it’s three times as common,” she continued.

Dr. Chime-Melton paused and invited the audience into the conversation, taking an impromptu survey of the people in the room. She asked who knew someone with the disease, causing a barrage of hands to go into the air. The anecdotal evidence supported a theory she had been harboring. “I believe firmly that it’s highly under-reported,” she said.

Race is not the only indicator that someone can be at an increased risk for sarcoidosis.

“It’s more common in women as well,” Dr. Chime-Melton revealed before explaining that it is “twice as common in women.” Black people are not just diagnosed more often. They also have poorer outcomes, according to Dr. Chime-Melton. “We have a higher prevalence of the disease, but it doesn’t end there, unfortunately,” she said. “When we do have the disease, we also have worse forms. So we see more breathlessness. We see more shortness of breath. We see more coughs and progression to the fibrosis to the scar and in the lungs.” .

Wilson shared her personal experiences during the painful journey towards arriving at a diagnosis. “I have walked the challenging path that many of you sarcoidosis patients are on right now,” she said. The symptoms that led her on a long path to being diagnosed appeared in 1986.

“I had a nagging cough, fatigue, and unexplained weight loss,” she added. She learned she had sarcoidosis after several misdiagnoses.

She now had the needed information after being subject to a series of irrelevant treatments. “I was finally thrilled that I was diagnosed with something and that it was not all in my head.” Wilson was subject to the medical gaslighting that many women experience. Her diagnosis offered her vindication. “It was not my menses. It was not the fact that I was a young 20-some-year-old woman and that it was stress which I had been told,” Wilson continued.

Steroids are not the only answer.

Wilson was prescribed prednisone, a steroid with significant side effects, including irritability, extra hair growth, fatigue, rampant sweating, and diminished libido. She worked with her caregiver to decrease the role of medicine in her care. “With my doctor’s guidance, we’ve created a multifaceted treatment plan to reduce my reliance on prednisone,” she said. Dr. Shukla expressed a distaste for the overwhelming use of steroids to manage sarcoidosis. He labeled them as “toxic therapy” and described witnessing the dismissal of the need for new treatment methods by executives. “Big companies or even you know investors, they would say, ‘It’s not that bad of a disease, those patients can just take steroids,’ and that just really bothered me,” he said. Dr. Shukla was impacted by seeing “what steroids can do to someone’s life.” “In 50 years in the medical textbooks, they’re going to say this was poison,” he declared.

Sarcoidosis impacts more than the lungs. “90% of people have it in the lungs, but then you appear in multiple other organ systems. It can affect the eyes, lead to strokes, and the skin,” explained Dr. Chime-Melton.

Take Action

• Persistent coughs are cause for concern. Request a chest X-ray if you suspect you have sarcoidosis.
• Talk to your doctor about alternative healing methods. Nutrition can make a difference in a patient’s quality of life, and you have the right to seek information.
• Ask questions about the side effects of any treatment therapies and stay current on your options.

This session was presented by aTyr Pharma

Panelists:

Sanjay S. Shukla, M.D., M.S. President and CEO aTyr Pharma

Chidinma Chime-Melton MD, MBA, FCCP, CPHQ Assistant Professor of Medicine, UCLA

Andrea Wilson Sarcoidosis Patient and Advocate

The post Sarcoidosis: It’s More Than Just a Nagging Cough appeared first on Black Health Matters.

The post Understanding Small Cell Lung Cancer Are You At Risk appeared first on Black Health Matters.

Psoriatic arthritis (PsA) is an autoimmune condition and a common complication of psoriasis.^2,3 It occurs in 10-20% of people with psoriasis, but you may develop PsA without noticing or being diagnosed with psoriasis.^4,5 While PsA is less common in Black Americans than whites, it may be more difficult to identify skin symptoms in Black patients.² Symptoms may also be more severe.² PsA has similar symptoms as other types of arthritis such as osteoarthritis and rheumatoid arthritis.⁴ Complete this screening tool to help assess if you may have PsA.

Identifying Psoriatic Arthritis

PsA may be caused by environmental or genetic factors. Other risk factors include family history, age (30-50 years old), obesity, and smoking.⁶ The time of onset and severity of PsA symptoms may vary.⁵ Common areas of involvement include the joints, spine, and areas where a tendon or ligament attaches to a bone.⁶

Common symptoms of PsA include

• Morning stiffness
• Tiredness
• Skin rash that may appear anywhere on your body and may appear to be a purplish-brown color on darker skin complexions
• Changes to the color, thickness, or texture of your fingernails
• Painful swelling in your finger and toes that may resemble sausages
• Stiff and painful joints that may be red, hot, and swollen
• Pain, redness, and inflammation in your eyes
• Pain and tenderness at the back of the heel and sole of the foot

It is important to see a specialist if you suspect you may have PsA or if you are experiencing symptoms.

Communicating Your Concerns

You may feel anxious about speaking with your healthcare provider about your concerns, but know that you are making the best decision for your health. You should be prepared to discuss your symptoms and go into detail about what you are feeling and where.⁵ You may find it helpful to use a diary or journal to keep track of your symptoms and share with your provider. Advocate for yourself and ask questions. If you’re feeling uneasy, ask more questions. Your provider can help you better understand more about the disease, your treatment options, who you should follow up with for your care, and how to cope. There are also online resources such as the Patient Navigation Center that you can take advantage of.

Diversity in Psoriatic Arthritis Research

Diversity in clinical trials is important to help us understand how different groups may respond differently to treatment.^3,7 Unfortunately, there is a lack of representation and PsA clinical trial participation among Black Americans.⁷ More research is needed to determine if and how PsA disproportionately impacts patients of different races.⁸ When you participate in a clinical trial, you are taking a bold step towards progress. Participating in a clinical trial can help you learn more about your condition while receiving expert care. If you or a loved one has been diagnosed with PsA and have not been treated with any medications recently, you may be eligible to participate in a clinical trial. If you are interested in learning more about if you may be eligible for PsA clinical trial participation, visit BMS Study Connect.

Funded by Bristol Myers Squibb.

– – –

References:

1. National Psoriasis Foundation. About Psoriasis
2. Arthritis Foundation. Arthritis in the Black Community
3. BIPOC Patient Voices: Living with Psoriasis and Psoriatic Arthritis
4. CDC. What is Psoriasis?
5. National Psoriasis Foundation. About Psoriatic Arthritis
6. Psoriasis and Psoriatic Arthritis: What’s the Connection?
7. Lack of Diversity in Clinical Trials of Psoriatic Arthritis
8. Promoting Diversity, Equity, and Inclusion for Psoriatic Diseases

The post Psoriatic Arthritis: What You Need to Know appeared first on Black Health Matters.

The full transcript of the session is below:

Wendy Racquel Robinson (00:03): One thing that I am excited about is this next section, and I think it’s going to be something we all need to lend our ears, eyes, and hearts to. It’s very important, in The Invisible Ache, Black Men identify their pain and reclaim their power. That is what this section is about, and your [mental wellbeing matters. The title of this session is called, like I said, The Invisible Ache, Black Men Identifying Their Pain and Reclaiming their Power.

It is also the title of a new book by our next panelist, Mr. Courtney. B Vance is a Tony and two-Time Emmy Award-winning actor, producer, and Arthur in this Harvard Scholar, as well as a Yale School of Drama trained actor is always a powerful presence. From the theatrical boards to the silver screen,

Dr. Robin I. Smith is a licensed psychologist. She’s a media personality. She’s a bestselling author, keynote speaker, and ordained minister. Hallelujah. As a host of Sirius XMs, the Dr. Robin Show, Dr. Robin addresses today’s most pressing societal changes through fearless truth-telling. I think I will settle down while everybody settles down because this is a very important session that I want us to give our eyes, ears, and hearts to.

01:37): Thank you for moderating this discussion, Mr. Tony Cornelius. Tony Cornelius is a veteran television producer and founder of the Don Cornelius Foundation, which focuses on suicide prevention and awareness, and we are so excited to welcome this distinguished panel for this vital discussion. So please join me in welcoming these panelists. Thank you so much.

Tony Cornelius (02:02): Well, first I want to say I’m honored to be here. I was invited here last year for the first time, and Black Health Matters is real and I am absolutely pleased to have these two talented people on stage with me to be exact. There’s a book here called The Invisible Ache by Courtney Vance and Dr. Robin l Smith. And this is a fantastic exploration on Black Men Identifying Their Pain and Their Power, Reclaiming It. And when I first saw this book, this is exactly what’s happening with me as well. I have an invisible wake-up right now. My father passed in February 2012 of suicide, and that invisible ache follows me to this very day. I’d like to start by asking Dr. Robin and Courtney about this book’s title, the Invisible Ache. I’m really interested to know what that’s really about.

Dr. Robin Smith (03:29): We talked a lot. Courtney, my team, and I talked about the best topic, and people had different ideas. I was clear that there is like a soul ache that Black men often carry, human beings carry it, but Black men in particular carry this ache that no one can see, and that if we see it, sometimes we see it through crime or we see it through drug use, but there’s no language it that says, I hurt. I hurt. And I wonder if gun violence would go down. Not only poverty [is a huge part of it, racism is a part of it, but what’s also a huge part of it is if I can’t cry when I hurt, when little girls fall and we pick them up and we kiss their knee and tell them it’s okay, and little boys fall and we tell ’em they better not cry or we’ll give them something to cry about. And then as women, we get connected with these men and we shame and blame them. And I’m not shaming and blaming women, but I am saying that Black men have been stripped of their divine birthright and they hurt. And so Courtney and I are here almost like a principal would give a permission slip to say, not only do you hurt, but we see you and we see your ache.

Tony Cornelius (05:38): It’s always interesting to meet someone who identifies with suicide prevention and it’s very hard to talk about. I didn’t realize that Courtney had family members, particularly his father, as my father committed suicide. Suicide died by suicide, died by suicide. [I’m sorry. No, no. Don’t be sorry. There is a way to say this. We’re just learning. We’re all learning. There is a way to say this and we have an instant connection. An instant connection. And my question to Corey is, Courtney is how are you reclaiming your life back behind that? I mean, we talked about talking to someone. I mean personally, I have to admit, my father passed in 2012 and I haven’t had any therapy. I used my family as my therapy. My church is my therapy. My mother has my therapy, but never gone into a real serious conversation with someone about it. And it’s very, I’m almost afraid to do it. (

06:48): I know it’s hard work. It’s very, very hard work. So Courtney, I want to know how you were able to get through this. My mother. My mother, once I went home with my sister to take care of my mother’s affairs in order. And when we finished a month later, my mother said, now, when you and your sister go back to your cities, I want you to find a therapist. I’m going to find somebody here in Detroit, but when you go back to New York and to DC find somebody and we’re going to break this thing. And she gave me the license. And I know we don’t have a lot of time, but the thing that was most important to me to realize is that I’m worth it.

(07:30): At 30 years old, I had gone as far as I could go with the achievement track. I had gone to Detroit Country Day school with my scholarship and did everything that was at that school for 16 hours a day for four years, three sports for four years. Every club you could join, I joined and then went to Harvard and did that thing, went to Yale Drama School and did that thing and went to New York and did that thing, was on top of the world with six degrees of separation on Broadway. And I got the call from my mother, hysterical that your father killed himself. So all of that achievement stuff didn’t work no more. Didn’t nobody care about that mess. And it was time for me [to take the time and figure out me. My mother ped up on the floor and said to my sister, and I don’t even know how to turn on the VCR, y’all may not know, but Tony, they may not know what, it’s a young crowd out there, Dr. Robin, what are we going to do with him?

(08:59): Okay, we’ll leave that alone. We’ll, okay. The journey of finding someone for me was difficult. As you said, it’s work. But when I finally put my Laura Lenny actress, you may know her, she was in the cast with six degrees with us. And when I came back to the show, everybody wrapped me up and started trying to give me do for me. And Laura said, I have a therapist, massage therapist, I want you to, oh, okay, cool. In between shows on Wednesday when laid down on the table, met gun osp, laid down on the table and before I started, Gunilla asked me, is there anything I need to know before I get started? She said, I said, well, my father just died of suicide. She broke. I broke, and we began. And when she finished, she said, I know the perfect person for you. And that’s how I found my therapist. I was with her for about four years on and off. And initially, we did once a week, and thank God I was on Broadway, and was able to pay for her. But when I got in there, I recognized and started talking a mile a minute, and Dr. K, named Dr. Kornfield, got arrested. So I called her Dr. K. Dr. K said, Courtney, you don’t need to tell me everything today.

(10:29): But I realized this was my time, this was my time, and I could pay for it. And we worked off my dream. She challenged me and she said, I want you to get your dreams. And long story, I got my dreams and brought in 35 dreams to her. The next session, I mean a month two, has gone by, but 35 dreams. And so she said, Courtney, choose one. I said, really? So from somebody who didn’t know what to do, Dr. Robin, and if you listen and if you’re committed to the journey, to you, to our journey, we will be led. What we need to do and who we need to be with. But the main thing is you commit to me. You commit to commit to the journey. And by virtue of the journey, you will find out everything you need to find out. Dr. Robin, let’s say something real quick, and this leads me to a question to you, Dr. Robin, in seeking help, how do we seek help? Whether it be those that are depressed, those that are struggling with whatever it is they’re struggling with, how do we seek.

Dr. Robin Smith (11:39): Help? Anxiety, sometimes we think of depression and suicide. We don’t think about how anxious many people are, how afraid many people are. And I’m going to answer your question and roll it in to something you said. And Courtney said, you said you’re afraid almost to do the work, the hard work. I just want to remind us that suffering is a lot of work too. We’re just more familiar with how to suffer. And so I just want us to realize that it takes a lot of work and a lot of energy to suffer and to suffer silently and to be invisible how we find help. It’s interesting, Tony, because Courtney talked about Dr. K, and this is in The Invisible A invisible ache, our new book, which will be out on November 7th. Courtney had several other experiences, shall we say, with therapists who, and I’m happy to hold this up there.

(12:57): Courtney and I are so excited about it. And we’re excited not because for the sake of excitement, we’re excited because Black lives and Black Health Matters and we know that this is going to save lives. But Courtney had several therapists, Tony before, or several appointments with therapists who were, I’m just going to say it because we don’t have a lot of time to find nice words where it was [00:13:30] a disaster and a disaster because some people were intrigued with Courtney B Vance, who was on Broadway. And so they would love to have signed up as his therapist. There were people, there was a Black woman who therapist, because sometimes we think we need to find somebody who’s like us. So if I’m a Black man, I need to find a Black man. If I’m a Black woman, I need to find a Black woman. I ask this question when people have called me and said, I need, I’m also, they mentioned an ordained minister. So sometimes people will call and say, I need a Christian and I want to come to you because I heard you preaching. And I’ll say to them, if you needed heart surgery or brain surgery, would you ask if that person is a Christian or would you ask, can you get me off the table alive?

(14:26): This is how we find someone word of mouth. So we got to find people like you met Courtney. And so you might say like, okay, what was her name? And I know she’s going on, but who do we know in California? Now you’ve met me. So word of mouth. But because we’ve been ashamed as a people about getting help now we’ll borrow money for bail. We’ll tell people about all kinds of mess,] but we won’t say, I’m not sleeping well and I have these thoughts that I can’t get rid of and I can’t shake them. And so part of Tony, what we do is we find the right people. I didn’t say, just go ask anybody. Ask someone who looks like they’re doing their work. Who has told you that their child struggled? Courtney’s godson, 23 years young in 2020, died by suicide, vibrant, had loving parents, 23 would be 26 now and is gone. So we can’t keep these secrets about our suffering as if somehow we are ashamed of our humanity. All we’re doing is claiming that we are wholly] and fully human. Remember it was said that we were only three fifths. I don’t know if you all know that, that we were only partially human. So I don’t know what part they left off, but I do know here today that part of our divine birthright is that we reclaim our full humanity and that comes with being broken and being hurt and being resilient.

Tony Cornelius (16:32): Fantastic. Well, lemme say this. As you talk about that, let’s talk a little bit about recognizing, and particularly I’m going to send this over to Courtney. My experience, my father said to me weeks before he passed, well Tony, I don’t know how long I’m going to be here as a father, father tells you that you go, well, dad, what do you mean you don’t know how long you’re going to be here? Well, Tony, I just don’t know. Well, that goes [00:17:00] in one ear and out the other really. And then finally it happened, and then I understood. But to recognizing it is so, so difficult and so important at the same time. And I’m just wondering, Courtney, have you learned anything by this experience as far as recognizing some of those things amongst us? And this is not just for men, it’s for women as well.

(17:24): I don’t want people to think this is just for men. Women have the same thoughts we have. Well, I think we all know folks. We all know ourselves. And the difficult times that we go through, and the question is for me, always, what are we going to do about it? I mean, I didn’t know that there was something that I could do. Tony, Dr. Robin, I didn’t know what,] as I said, as when I got into therapy, I didn’t even know I needed to be in therapy because I was so used to doing things the way I had done things. So I think the largest step is to recognize that I need to talk to somebody or I would like to talk to somebody. And from talking to Dr. K as I related, I just started babbling because there was so much to you just do.

(18:40): And some people do, and don’t go where you can be recognized and they’re living life. I was blessed to be able to be successful in the career that chose me. [00:19:00] And a lot of times that’s enough. And if there’s some struggle that goes along with it, then you just got to learn how to deal with that. That’s just on you. You just got to learn. But the knowledge that I don’t just have to put up with the suffering, that there is something else other on the other side of suffering and the fact that we actually succeed or do well at our job or do, but [00:19:30] I’m not in abundance. I’m not old. I don’t feel well. And I think that’s everybody. I don’t just think that’s, I mean, we are told to give our cars a tuna and we go to the dentist every well, and we’re supposed to do our pap smears and colonoscopy Well, [00:20:00] and we’re supposed to take care of our physical cells, but this is a part of it.

(20:04): The mental health, it’s all about the battlefield is the mind. It’s all about the mind, the way as a person thinks in their mind. So they are. And the fact that our mental health is the last thing we pay attention to, but it’s the last thing that we think that we need to pay attention to because nobody wants to talk about it. Nobody wants to say that. Say, yeah, you’re not dealing. Well, [00:20:30] please don’t talk to me about that. Okay, you’re struggling with what do you want me to do? You want me to pray for you? Okay, I’ll pray for you. And then I got to go. But what are we going to do about it? And that’s what our book is about. That the message from me, from my experience is that it came up on me and I didn’t know what to do, anything. But my mother, I love her again. Thank you, holy Spirit. My [00:21:00] mother said, my sister named is Cecily CEEs. And Courtney, when you go back find somebody, she didn’t tell me what to do. Dr. K didn’t tell me. She said, I want you to get your dreams. She didn’t tell me how to do it. She challenged me. Don’t challenge me.

Dr. Robin Smith (21:17): She also asked, are you patient? Yea.

Tony Cornelius (21:22): And the answer is no, Courtney, (21:25): He told the truth. He said, no, I’m not. And then what did she say? (21:29): She [00:21:30] said, well, do you have the patience to let the mud settle in the water and the water become clear? And I said, no. (21:46): I said, I got to go, Dr. K. I got to get going. I’m going to make a decision. She said, well, how do you make decisions, Courtney? I mean, just like everybody, right? And this is how you get yourself in trouble. You say, well, that is what everybody does, right? No. I said, well, I just like in acting, I just go for a choice. I make a choice. I flip a coin and just go for her. She said, that’s this is all information that she’s gleaning from me to see where we are. Where is this young man? What’s the next steps for this young man? How many sessions per week do we need to? Dr.

Robin Smith (22:28): And Tony, I want to say something [about your father’s cry. Father’s cry, his godson’s cry, his courage. Sometimes we say that people who die by suicide, they weren’t courageous. We blame them for running out of steam. We blame them or we blame ourselves or both for not having heard. But how would you ever have known, and this is something I want to remind us all. Yes. He said, I don’t think I’m going to be around much longer. That was a cry. But you could never have known that a few weeks or so later, his despair would

Tony Cornelius (23:25): Prevail. And my sister said the exact same thing. Yeah. I mean, my father said the exact same thing to  my sister. She said, daddy, we’re going to take care of you. Something like that. Something he said, oh no baby, you don’t need to take care of me. Something like that without coming out and saying it, right, without saying it. Trying

Dr. Robin Smith (23:43): To. Right. So we can’t know that. But what we can do with these new ears, we can begin to listen. I think about there are times when I’ve said, because when I’ve asked people, have you ever been suicidal? And people] are like, oh, not me. And I’m like, well, it depends on what you think suicidal thoughts are. Because I’ve thought what a blessing it would be when life was rawest for me not to see the sun again. So I didn’t have a plan, and I didn’t have a weapon, maybe, and I didn’t have but the ache in me. And I had people who loved me say, oh, you don’t want to say that. You don’t want to. No, I mean you have everything to live for, which makes the person who is aching even exactly ache more.

Tony Cornelius (24:43): Let me cut in by saying I don’t know how much more time we have, but let’s talk a little bit about reclaiming. Let’s talk about how we can get better. How do we find ourselves again, and what do we have to do to reclaim our lives?

Dr. Robin Smith (25:03): Yeah, our birthright. Courtney’s mother, in terms of getting resources, everyone can’t afford a private therapist. But there are universities, and I want everyone to know this, that have counseling programs. I was working in one, and they have sliding scales. Sometimes it’s free. You can get some of the best care in these centers because people are training with some of the best clinicians. So I want to remind us that there are community mental health centers all around the country. There are universities all around the country, but Courtney’s mother, I call her, she was a fierce lion Mama Vance. And what I want to remind us is of this, when we say to our children, do what I say, not what I do, it doesn’t work. There’s a quote that says The lion’s story will never be known as long as the hunter is the one to tell it.

(26:02): So when you said, where do we start? We start, the lion’s story will never be known as long as the hunter is the one to tell it. And so we start Tony by telling our stories to someone safe, someone who understands that this is holy ground. Someone who can tolerate [not having the answers and can let the water get really messy and the mud to settle, and they don’t need you to be okay when you’re not. So we start by telling our story to someone who can bear and we don’t feel like it’s too much for them to carry. They’re going to be up at night. It’s so, so important that the beginning is for the lion to tell his or her own story to some person or community where it is safe. Sometimes it’s the barbershop. It is sometimes in that chair where someone says, man, how are you? And you say, I’m not well. And they don’t shut you down. They say, well, what’s happening? Tell me more. This is the line I want to feed you. When someone tells you they are hurting, don’t try and fix it. Ask them to tell you more. So you’re at your wits end. You think you may not be here much longer. Tell me more. Because you can’t reassure someone about their ache. Ask them to tell you more.

Tony Cornelius (28:02): It’s interesting as I listen to you, there are times when people come to me who are in pain, but I think what happens is we’re so involved in ourself that we don’t hear it. And I’ve had friends that come to me and say, Tony, I’m having some thoughts. And because I understand that, I dig in immediately, but there’s so many people who don’t have that experience. And the interesting thing is that those who don’t have that experience, it goes in one ear, right out the other. I don’t know if you’ve experienced that as well, but here’s what I want to do. If I came to you and told you I was a certain kind of way, what would you say to me

Dr. Robin Smith (28:50): If you said to me that you were feeling depressed and thinking of taking your life or just depressed? I’d ask, tell me [] what’s that depression look like? How does it show up in your everyday life? How does it show up in your eating and in your sleeping? How does it show up? Is there any joy in your life? And what I’ve found, Tony, is when we hear Black men don’t go to therapy, I’m like, I don’t know what Black men people are talking about. Because if you create a safe space for a Black man to tell his story, he’ll talk. He’ll keep talking. He won’t stop talking. You’ll have to remind him that we can do this next week and do it again the following week. And so I would make space to let that man know that we can make this journey together. I’d also ask if someone’s talking about not wanting to live, [00:30:00] whether or not they have a plan. We need to know, have people, how far has someone thought out not being here? So, instead of being afraid, again, I don’t want to ask because that might put the thought in their head. That’s the lie. You don’t put that thought in someone’s head. You help someone express what is already happening inside of them.

Tony Cornelius (30:30): [00:30:30] Well, we’ve got a couple of minutes left, and I want Courtney to say, just give us a few words on the way out. I was just sitting thinking about what you were saying, doc, and one of the things that, the thoughts that are in our mind that as long as it’s taken for the thoughts to get in our minds, it’s going to take an equal] amount of the quote, suicidal thoughts. It’s going to take an equal amount. They said it takes three weeks or so to change habits. So one of the things that helps me is finding those things, that finding the joy. I like to ride my bike. I have e-bikes now, and when I’m riding my bike, my mind goes somewhere else, and it’s not running. I had a total [knee replacement on my knees, so I can’t be running like I used to anymore.

(31:34): But I can ride my bike, I can ride my scooter. I like to listen to books. So I read more now than I have. And once, it’s another thing, something that I can do for my mind that it’s not some loose drugs, not cigarettes, it’s not coffee, it’s not drinking. It’s something. Find something that you love to do and do it. Find something that brings you joy, that’s simple, that’s not expensive, something that’s doable. And if it’s walking for you, just get out and walk. Maybe sometimes you can’t walk in your neighborhood, I get it. But find something to do. Get on the bus and go to a neighborhood where you can walk around just to make sure it’s not Beverly Hills because they don’t let you walk around that neighborhood. I know. [00:32:30] Don’t come back and say, Courtney said, how’d you go to Beverly Hills and walk around? What are you doing here? Courtney B. Vance and I should walk around to Beverly Hills. Don’t be going to Beverly Hills and walking around. Okay, I’m, that’s all I’m saying, ladies and gentlemen, the invisible ache. Did we give him something to go out with? Don’t go to Beverly Hills. We having so much fun in here, Courtney. He doesn’t want to go home. He doesn’t want to go home. But I want to introduce this book, the Invisible Ache, Black Men Identifying Their Pain and Reclaiming Their Power. Courtney b Vance, and Dr. Robin l Smith.

Dr. Robin Smith (33:08): Thank you. And thank you, Tony. I mean, I know we need to end, but I really want to thank you and thank Courtney for this moment because what I know for sure, I know this for sure, that there are Black men and women all around the country who are going to find the right person to say, ouch. I hurt. And it will save lives. It will save lives. And we will remember in your father’s honor and in your father’s honor that they paid so that other Black men, their sons and others, and Black women of course too, but our Black boys and our Black men, so they can live and live abundantly. So thank you. Oh, for Tony Cornelius (34:05): Question, I was told there was a q and a, but I’m not sure. Dr. Robin Smith (34:09): Hi. Okay. My name is Re Bryant. I am a licensed clinician in la. I’ve been practicing for about 15 years, so I’m happy we’re doing this segment today. I also run a nonprofit that sponsors Black men to get licensed clinical support from other [00:34:30] Black men. We’re actively doing that program right now, so I just wanted to put that out there. If there are African American men who are looking to get mental health support, you may not have insurance or what have you. We are running a program right now where we will cover it for free, eight sessions completely free. So if you want to come to find me afterward, please come and talk to me. If you are looking for a therapist for ongoing support, I have a private practice in la Brian [00:35:00] counseling.com. CCG for you.org is a nonprofit. So, I just wanted to put that out there. I’m glad you guys are doing this work.

(35:08): You

Courtney B. Vance (35:10): Quick comment and then a question. Really, thank you for this space. I have a history of attempted suicides from age six to 20. I’m 22 now, so I’m about just 22 in August, so a year and some change of those stocks and attempts outside of me, [00:35:30] just thanks to especially Ms. Culley, she’s the executive director of Sanctuary of Hope, who she creates a space and opportunities where we can receive therapy and heal for former foster youth and former homeless youth. So that just as I’m at this, the question, just as I’m in this period of healing and whatnot when it comes to vulnerability, how do you [00:36:00] all engage in that without the thought of there being a sabotage in the future or that paranoia of it coming back to bite you.

Dr. Robin Smith (36:13): And tell us your name again?

Courtney B. Vance (36:15): Nathaniel. Nathaniel. Nathaniel.

Dr. Robin Smith (36:17): Let me say this. You are every piece of courage to be whole. I mean, you are [00:36:30] everything. I mean, you are Nathaniel, you are. And I’m not minimizing that your life from six to 22 has been painful and traumatic, but you are the living testimony that with those attempted suicides, because attempted suicides, and you know this even better than I do, it’s a pain. It is that invisible [00:37:00] ache. And so when you talk about vulnerability, if we, you, me, and those in this room understand that vulnerability is part of your superpower, you could not, and you didn’t have to say anything. You didn’t have to say a word. So I want to ensure that you understand that everyone in this room and around the country understands that vulnerability, [00:37:30] if shared with the right people, is our superpower. And if we make the mistake of trusting someone unworthy, we’ve all done that. I’ve told things to people that I’m sorry, I told them because they’ve taken my vulnerability and used it against me. But that’s okay because as long as I’m learning, it’s not a failure. It’s [00:38:00] just feedback telling me, don’t do that again with that person. And so what you are doing is you are living right now showing us exactly what it looks like to be strong and mighty and vulnerable in your power.

Tony Cornelius (38:25): My father was a foster child, and [00:38:30] thought that his mother didn’t want him. And because he thought his mother didn’t want him at the base core, when things got rough, he was unmoored. Eventually, he had enough, and there was no long story here. He had enough, and he took himself out. But we found out that his mother was looking for him. And if he had just been able to hold on, and I found out [00:39:00] that me, he held on long enough to, I knew I was loved and unconditionally that he was at everything, every event, every sporting event, everything. He was there. My mother was there. He couldn’t do it for me. He wasn’t done for him, but he did it for my sister and me, and then he did it for me so that I could find out that my vulnerability, when I found acting, [00:39:30] I found that I can use my vulnerability, as you had said, as power. Your superpower, my superpower. Vulnerability in acting is a superpower. If you’ve got that, you’ve got it. People are, oh, Courtney, I wish, how do you, it’s like, but baby, that’s my superpower.

(39:54): That’s my superpower. And so you keep, I will stand up for you. You [00:40:00] keep on going. You keep, you just keep going. Don’t you stop and find something positive? You find somebody to talk to so that when those thoughts come up in your head again, you got positive things to say, get away from me so that you end up one day sitting up here with a mic [00:40:30] on a couch with a testimony. That’s what you got. You got a testimony. So you see all this, use that for when things get rough again. Because they will. Oh, tomorrow it’s going to be up on you. So you have to arm yourself to get ready for the fight. That’s what it is. It’s just a fight. And just because you get their thoughts, you see all

[00:41:00] These people have been here.

(41:01): Every one of us has those thoughts. The question is, what you going to do about ’em? And I say, tell ’em to go somewhere. You got somewhere to go. No. With that being said, I want you to know we love you. Amen. And I felt you before you got on that microphone. Okay? And I love you. I don’t even know you and I love you. Amen. And there’s so many other people that love you, man. Okay? [00:41:30] And if my father were here today, I’d tell him the same thing You so keep doing what you’re doing and I love how you got up there and spoke out and keep speaking out. Okay?

Speaker 5 (41:46): I think they

Tony Cornelius (41:47): Said that we ain’t got to go home, but Speaker 6 (41:49): I think they right. You don’t have to go home, but you must leave here. We want to tell you that, by the way, hope is, hold on. Pain ends hope. [00:42:00] Hold on. Pain ends. And a lot of times we don’t know whether we’re anxious, we’re depressed. We have thoughts. We don’t know what to do with, hold on, hold on. Pain. That’s hope. Just remember, hold on. Pain. And so we have a question.

Speaker 5 (42:21): My name is Ted Booker, and I work for an unapologetically Black agency called the Ahmad Institute. We are intersectional peer support, behavior, health [00:42:30], and wellness organization. You can get therapy from us for free. We’re in South la. We’re in Watts. Wonderful. It’s called the Ahma Institute. You can get on our list and you can receive therapy for free without insurance.

Speaker 6 (42:46): Wonderful. And say the name again so everyone

Speaker 5 (42:48): Can, the Ahma Institute. It’s an acronym for Arming Minorities Against Addiction and Disease. And I just had a quick statement because this is a great beginning, but there’s one thing in Black culture [00:43:00] current day that we still have to deal with that deals with this subject matter. You don’t know Black culture if you don’t know that Black women run Black culture and lead Black culture. However, one of the things that is happening today is that I engage with young people a lot. So much stuff happens to Black males that they get protected, and our females are raised. So the other disparity like this between men and women, when you look at socioeconomic status, education, head of household [00:43:30], and Black culture between males and females, it looks like this. (43:35): And you can’t do anything in Black culture without our women. Even if she’s supporting. Amen. You cannot. I’ll say it again. You cannot do anything in Black culture without our women. And that’s a direct result of slavery, what slavery did to us in this country. And there are so many things associated with that that we have not the stigmas that we have not dealt with, but where do we begin in terms of, we [00:44:00] still need to protect, but where do we begin with raising our boys where they could be on an equal playing field with our women because our young ladies are being taught to survive and take care of themselves. Their counterparts look like this. Speaker 6 (44:19): Absolutely. Yeah. Thank you so much for that. So I’m supposed to tell you there is a QR code. QR code [00:44:30] was put together today for the invisible ache. It’s on your screen. You can pre-order the book right now. You can buy the book. We want you to do that. The book is also on audio. Courtney and I recorded the book, so you can buy it now. Go to that QR code and purchase the Invisible A. It’s about saving lives and our community. Thank [00:45:00] you so much, and God bless you. Thank.

The post The Invisible Ache: Black Men Identifying Their Pain and Reclaiming Their Power appeared first on Black Health Matters.

Dr. Brown currently serves as a medical officer at Carswell Federal Medical Center with the Bureau of Prisons which is the only federal medical facility devoted to women’s medical care. Ms. Harris and Ms. Goodwin are both endometrial cancer survivors and advocates.

Black Health Matters: For those who may not know, which types of cancer would be considered gynecologic cancers?

Dr. Robinson-Brown: Gynecologic cancers include ovarian cancer, uterine/endometrial cancer, cervical cancer, vulvar cancer, and vaginal cancer.

Black Health Matters: How common is endometrial cancer and who is at a higher risk of being diagnosed?

Dr. Robinson-Brown: Endometrial cancer is the most common gynecological cancer in developed countries. It is the 6th most common in women worldwide and the 4th most common in the United States. The average age of diagnosis is 62, and 90% of cases occur after age 50. This type of cancer occurs less frequently in women who have not yet gone through menopause.

Those living with obesity, diabetes, or Lynch Syndrome are at an increased risk. Lynch syndrome is a genetic syndrome that comes with a high risk of developing endometrial, colorectal, ovarian, and urinary tract cancers.  The lifetime risk of endometrial cancer is 40-60%.

If you had your first menstrual cycle before age 10, have not given birth to any children, or experience menopause after the age of 55, you are also at an increased risk. Tamoxifen use is another risk factor.

Black Health Matters: Are there any ways to prevent endometrial cancer from occurring?

Dr. Robinson-Brown: There are some factors that have been shown to be protective against endometrial cancer. They include hysterectomy, use of combined oral contraceptive pills, progestin-based contraceptives or intrauterine devices, pregnancy, smoking (however, you should not start smoking as a means of prevention), exercise, and breastfeeding.

There is no effective screening protocol for endometrial cancer and no noninvasive test with good sensitivity. Controlling weight, blood pressure, and diabetes helps reduce risk. Restrict the use of estrogen after menopause if the uterus is still intact and report any abnormal bleeding to your gynecologist.

Black Health Matters: How is the cancer diagnosed?

Dr. Robinson-Brown: The most common presentation is abnormal uterine bleeding which occurs in about 90% of cases. Advanced disease may present with abdominal pain and distension. Less than 5% of cases do not have any symptoms.

A Pap smear and transvaginal ultrasound will likely show some abnormalities. However, an endometrial biopsy with hysteroscopy is the gold standard for diagnosis. Other exams, such as a pelvic exam, are usually normal unless there is advanced disease.

Black Health Matters: How is the cancer staged and what are the survival rates?

Dr. Robinson-Brown: Uterine cancers are staged clinically by a CT or MRI. In Stage 1, cancer cells are only found in the uterus. In Stage 2, the cancer has spread to the opening of the uterus, known as the cervix. In Stage 3, the cancer has spread outside of the uterus to the nearby lymph nodes, ovaries, fallopian tubes, or vagina. In Stage 4, the cancer has spread to the bladder, rectum, or outside of the pelvis such as the lungs or abdomen.

The overall 5-year survival rate for endometrial cancer is 80%. Rates are higher at earlier stages: Stage 1: 87%, Stage 2: 76%, Stage 3: 59%, and Stage 4: 18%. The outlook is good if the cancer is detected and treated early.

Black Health Matters: What kind of treatment options are available or recommended?

Dr. Robinson-Brown: The mainstay of treatment is surgery which usually includes a hysterectomy. Other treatment options include radiotherapy (in those with later-stage disease or who may not be a good surgical candidate), chemotherapy, hormonal therapy, and targeted therapy

Black Health Matters: Thank you for the overview and excellent information Dr. Robinson-Brown.

Let’s switch gears and learn more about our patient ambassadors. Do you mind sharing with us a little about your journey with endometrial cancer?

Ms. Harris: My journey began in 2016 with periodic vaginal bleeding after menopause which I did not know was a sign of endometrial cancer (EC). In May of 2022, I received an abnormal pap smear report and a biopsy of the lining of my uterus was performed. I was diagnosed with uterine cancer and referred to a gynecological oncologist who informed me that immediate surgery for the removal of the uterus was needed.

The total hysterectomy surgery was performed in June of 2022, which included the removal of the uterus, cervix, both ovaries, and both fallopian tubes. The physicians noted the cancer as Stage 1A. In July of 2022, I received six rounds of radiation therapy via vaginal brachytherapy to complete therapy. In January of 2024, I became a survivor of EC for a second time.

Ms. Goodwin: I am a four-year Endometrial Stage 4 cancer survivor. I was first diagnosed in July 2019 with Endometrial cancer stage 3. In October 2019, after a complete hysterectomy, I was diagnosed with Stage 4b. My treatment path was a robotic hysterectomy, 6 rounds of chemotherapy, and 26 rounds of radiation. I became a peer supporter to reach back and support other women like me, to walk this journey victoriously.

Black Health Matters: Thank you for sharing. Any final thoughts or insights to share?

Ms. Harris: I have learned so much since being diagnosed with endometrial cancer of the uterus. My most important piece of advice is to pay attention to your body’s warning signals and seek regular gynecologic care. Also, be a strong advocate for your health when speaking with healthcare providers. There is not nearly enough information about EC as there is about breast, cervical, ovarian, or other reproductive cancers.

Want to learn more about endometrial cancer? Visit here to learn more.

The post Prioritizing Gynecologic Wellness: What Black Women Need to Know appeared first on Black Health Matters.

When a specific ethnic or minority group is underrepresented in clinical trials, this can be detrimental to the advancement of treatment options and significantly researchers are able to gain regarding factors or considerations that are specific to that group. It is imperative that we increase representation and diversity in clinical research, allowing critical insight into the complex differences that may exist among these groups and promoting improved outcomes.

If data including minority patients is lacking in clinical trial databases, this can limit the potential benefits of personalized medicine for minority communities. Increasing minority participation in clinical trials can provide valuable insights into cultural and social factors that affect healthcare decision-making and adherence to treatment regimens.

Increasing Clinical Trial Participation

While clinical trials play a huge role, it is crucial that participants in these trials appropriately represent the population. So crucial, in fact, that the FDA issued guidance in 2019 urging pharmaceutical companies to increase clinical trial enrollment of underrepresented populations. Diversifying clinical trial participation helps researchers better understand the risks and benefits across different groups and reduce health care disparities.

Limited access is one of the major barriers to involvement of underrepresented groups in clinical trials. Eli Lilly and Company recognizes that diversity in clinical trials is a critical part of ensuring medications are effective for those that use them, and  they strive to achieve diverse representation in their clinical trials.

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.

Disparities in Breast Cancer Clinical Trials

Lack of clinical trial diversity is a barrier to the advancement of breast cancer treatment. Black women specifically are largely underrepresented in clinical trials. In fact, Black patients make up less than 4% of enrolled patients for specific cancer treatments. Some factors that may explain the low participation rate include access to care, finances, lack of awareness, and patient uncertainty. If you are willing to participate in a clinical trial, but have concerns, speak with your health care provider about your options and the risks and benefits of participation. Your provider can also answer any questions you have.

Choosing to participate in a breast cancer clinical trial requires making the important decision to invest in your health and the health of other patients with breast cancer. When you volunteer for a clinical trial, you become a vital contributor to the research process. Your participation may also help researchers work toward understanding and improving health disparities.

Making your decision can come with an overflow of emotions. Understanding the role clinical trials play in the advancement of healthcare may help make your decision easier. If you choose to participate in a clinical trial,

If you or a loved one have early-stage ER+/HER2- breast cancer and have had surgery to treat it, click here to learn more about whether a clinical trial may be an option for you.

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References

• S. Food & Drug Administration. Enhancing the Diversity of Clinical Trial Populations — Eligibility Criteria, Enrollment Practices, and Trial Designs Guidance for Industry
• ACS Journals. Addressing racial/ethnic disparities in cancer clinical trials: Everyone has a role to play
• American Association for Cancer Research. Disparities In Clinical Research and Cancer Treatment
• Journal of Racial and Ethnic Health Disparities. Increasing Clinical Trial Participation of Black Women Diagnosed with Breast Cancer

The post What is the role of clinical trials in the advancement of breast cancer treatment? appeared first on Black Health Matters.

Developed over a century ago, Body mass index (BMI) is an estimate of body fat based on height and weight. It doesn’t measure body fat directly, but instead uses an equation to make an approximation. However, BMI can help determine whether a person is at an unhealthy or healthy weight.

Often, a high BMI can be a sign of too much fat on the body, while a low BMI can be a sign of too little fat on the body. The higher a person’s BMI, the greater their chances of developing certain serious conditions, such as heart disease, high blood pressure, and diabetes. A very low BMI can also cause health problems, including bone loss, decreased immune function, and anemia.

While BMI can be useful in screening children and adults for body weight problems, it does have its limits. BMI may overestimate the amount of body fat in athletes and other people with very muscular bodies. It may also underestimate the amount of body fat in older adults and other people who have lost muscle mass.

Adult BMI Calculator

More recently, BMI has been challenged for its discrepancies because it may misclassify rates of overweight and obesity in historically marginalized ethnic populations, particularly Black women.

Given that the BMI was developed based on studies in white populations, its ability to accurately classify overweight and obesity in other populations has been questioned. High BMI bodies have been stigmatized as “diseased bodies” in both scientific literature and media messaging.

Furthermore, those with high BMI bodies have been characterized as lacking willpower. For people and populations that BMI misclassifies as overweight, there can be social and medical consequences.

ALTERNATIVE HEALTH METRICS FOR BLACK WOMEN

Here are two health metrics aside from BMI that may be more accurate for Black women.

WAIST CIRCUMFERENCE

While the BMI is a good predictor of your risk of developing type 2 diabetes, it’s more accurate when combined with waist circumference measures.

Waist circumference measures abdominal adiposity—the excess fat around organs—and is an independent predictor of heart disease and type 2 diabetes risks.

Traditional recommendations indicate that waist circumference should be less than 35 inches (88 cm) in women and less than 40 inches (102 cm) in men.

WAIST-TO-HIP RATIO (WHR)

Another measure of abdominal obesity is the waist-to-hip ratio (WHR), which is a strong predictor of metabolic risk and heart disease.

Combining this measure with the BMI produces strong insights into patterns of body fat storage and health risk.

According to an older report from the World Health Organization, an ideal WHR is less than 0.85 for women, and 0.9 for men.

BMI relates weight to height and is an estimate of body fat and disease risk, although it’s not an accurate measure of body composition.

CONCLUSION

More research is needed to clarify how BMI impacts people of African descent and whether ethnic differences in body structure are clinically significant for disease outcomes.

Even though Black Americans have been shown to have lower body fat percentage and higher muscle masses, BMI may misclassify them as overweight or obese, since it doesn’t take variation in body composition into account.

Plus, studies indicate that structural racism specifically leads to higher BMIs among Black women, potentially making the BMI an unfair metric for this population.

Try this today: In addition to monitoring your BMI, you may want to keep track of your waist circumference and waist-to-hip ratio. And speak with a medical professional for help understanding what your numbers mean for you.

The post What Does Your BMI Say? What Black Women Should Know appeared first on Black Health Matters.

EC is the most common type of uterine cancer. It’s also one of the few cancers where diagnoses and deaths are on the rise. According to the American Cancer Society, it is estimated that there will be over 66,000 new cases of uterine cancer diagnosed in the United States in 2023 alone, accounting for over 13,000 deaths. It’s important for people to learn more about this disease so they can spot the potential signs at an early stage and take action.

Early detection can help save lives

EC may be more treatable when detected at an early stage. If diagnosed when the cancer is local and has not spread from the uterus, a patient’s five-year survival rate is 96%. Early detection and treatment is particularly important for communities of color, many of whom already experience health disparities. Black women are nearly twice as likely to die of EC compared to white women and are more often diagnosed at a later stage.

Risk factors and signs of EC

It is important that women and all people with a uterus are aware of the factors that may increase their risk of developing EC, which include but are not limited to obesity, age, family history of uterine cancer, high-fat diet and lack of exercise, conditions such as polycystic ovarian syndrome (PCOS), or a hereditary cancer syndrome such as Lynch syndrome. Knowing the signs of EC can also empower women to advocate for their health and help catch EC at an early stage. Look out for these common signs:

• Abnormal bleeding
• Spotting or brownish discharge after menopause
• Irregular or heavy bleeding before menopause
• Pelvic area pain or pressure.

“Prior to my diagnosis, I experienced symptoms like abnormal bleeding and intense cramps that were so painful, I knew I needed to see my doctor,” said Shawn Smith, an EC survivor.  “I’m now sharing my story because I want other women to be able to spot the signs of EC and speak up for themselves and the women in their lives.”

Engaging in open conversations with your doctor can make a big difference. It’s vital for all women — especially Black women — to speak to a doctor if they experience any potential symptoms of concern.

End the silence and raise awareness

SHARE Cancer Support, Facing Our Risk of Cancer Empowered (FORCE), Black Health Matters, Endometrial Cancer Action Network for African-Americans (ECANA), The Foundation for Women’s Cancer (FWC), and Eisai Inc. came together to launch Spot Her^® to help end the silence around EC by educating the public about the signs and symptoms of the disease.

If you want to help raise awareness and show your support for women living with EC, join the conversation on social media by tagging your posts with #SpotHerforEC. For every post shared using #SpotHerforEC, Eisai will donate one dollar (up to $20,000) between SHARE, FORCE and ECANA to support women living with EC.

Know the signs, spot them early, and help save lives. For more information and resources on EC, visit SpotHerforEC.com.

The post Empower Yourself and Others To Spot The Signs of Endometrial Cancer appeared first on Black Health Matters.

As a caregiver, you may be so focused on your loved one that you don’t realize that your own health and well-being are suffering. Watch for these signs of caregiver stress:

• Feeling overwhelmed or constantly worried
• Feeling tired often
• Getting too much sleep or not enough sleep
• Gaining or losing weight
• Becoming easily irritated or angry
• Losing interest in activities you used to enjoy
• Feeling sad
• Having frequent headaches, bodily pain or other physical problems
• Abusing alcohol or drugs, including prescription medications

Too much stress, especially over a long time, can harm your health. As a caregiver, you’re more likely to experience symptoms of depression or anxiety. In addition, you may not get enough sleep or physical activity, or eat a balanced diet—which increases your risk of medical problems, such as heart disease and diabetes.

To help manage caregiver stress:

• Accept help. Be prepared with a list of ways that others can help you, and let the helper choose what he or she would like to do. For instance, a friend may offer to take the person you care for on a walk a couple of times a week. Or a friend or family member may be able to run an errand, pick up your groceries or cook for you.
• Focus on what you are able to provide. It’s normal to feel guilty sometimes, but understand that no one is a “perfect” caregiver. Believe that you are doing the best you can and making the best decisions you can at any given time.
• Set realistic goals. Break large tasks into smaller steps that you can do one at a time. Prioritize, make lists and establish a daily routine. Begin to say no to requests that are draining, such as hosting holiday meals.
• Get connected. Find out about caregiving resources in your community. Many communities have classes specifically about the disease your loved one is facing. Caregiving services such as transportation, meal delivery or housekeeping may be available.
• Join a support group. A support group can provide validation and encouragement, as well as problem-solving strategies for difficult situations. People in support groups understand what you may be going through. A support group can also be a good place to create meaningful friendships.
• Seek social support. Make an effort to stay well-connected with family and friends who can offer nonjudgmental emotional support. Set aside time each week for connecting, even if it’s just a walk with a friend.
• Set personal health goals. For example, set goals to establish a good sleep routine, find time to be physically active on most days of the week, eat a healthy diet and drink plenty of water. Many caregivers have issues with sleeping. Not getting quality sleep over a long period of time can cause health issues. If you have trouble getting a good night’s sleep, talk to your doctor.
• See your doctor. Get recommended vaccinations and screenings. Make sure to tell your doctor that you’re a caregiver. Don’t hesitate to mention any concerns or symptoms you have.

If you’re like many caregivers, you have a hard time asking for help. Unfortunately, this attitude can lead to feeling isolated, frustrated and even depressed.

Rather than struggling on your own, take advantage of local resources for caregivers. To get started, check out the Eldercare Locator or contact your local Area Agency on Aging to learn about services in your community. You can find your local AAA online or in the government section of your telephone directory.

The post Caregiver Stress: Tips for Self-Care appeared first on Black Health Matters.