Saving Our Sisters: Breaking the Silence on Black Women And Health

Saving Our Sisters: Breaking the Silence on Black Women And Health

Video Courtesy of American Association for Cancer Research


This article has been updated from a previous version published in 2017.

RELATED: WHAT YOU NEED TO KNOW ABOUT BREAST CANCER


I’ve seen too many women die over the past few months. Women that had so much life left to live. Women that had virtually conquered the world and transformed lives. Women who were gone too soon. I took their deaths personally.

I was angry that I didn’t know about their cancers before they died. I was angered by their secrecy. I was angry at the disease that caused them to turn inward and remain invisible. Could they have been saved? I took it exceptionally hard because, just a few years ago, my own life was saved because of my sister.

February 2007, at the age of 35, my sister was diagnosed with breast cancer. She decided to visit the Emergency Room for a migraine headache and requested a mammogram due to a feeling she had. Not an actual physical feeling, but a gut feeling.

She almost dismissed that gnawing in her stomach and came close to chalking it up to her being somewhat of a “hypochondriac” but she pushed past her own internal judgment to ask the doctor to give her a mammogram. It was in her self-advocacy that she learned she had breast cancer.

My sister elected to have a mastectomy and began her journey to survivorship March of that year.

Too Close to Home

My sister’s diagnosis raised my awareness to the disease. I knew about cancer, as many of my aunts died of the deadly disease. However, this time, it was a little too close to home.

I shared my sister’s diagnosis with my doctor and she advised me, at 32 years of age, to get a baseline mammogram. I’m glad I did.

Three years later, in 2010, before my 35th birthday, I was diagnosed with breast cancer. Two years earlier I had a lumpectomy as a mass was discovered but it was benign. But it was due to that discovery that routine screenings began for me.

My routine mammogram in 2010 was one of the most difficult ones I had. The squeezing, pulling, and tugging of the technician to get a good picture was unpleasant. Waiting in a room for a few people to look at my results also caused great anxiety. The repeat exam caused great alarm. The letter in the mail carrying the news that I needed a biopsy was mortifying.

The fine needle aspiration and the diagnosis later sucked all the air out of my lungs. I was diagnosed with Stage 1 breast cancer…#worldstop!

My doctor advised me to have genetic counseling and it was through a blood draw and genetic testing that I learned I had the BRCA2 gene mutation. My doctor encouraged me to use that information to make an informed decision about my treatment. I decided to have a double-mastectomy.

There is a more technical term for it but essentially one breast was removed due to cancer and the other was removed as a preventive measure.

My Sister’s Keeper

The same BRCA2 gene mutation also increased my chances of having both breast and ovarian cancer so in 2011 I also had my ovaries removed. Everything had to go!

I am sharing this story because I want to save a sister. My sister did for me what I hope to do for you, and that is to encourage you to become an advocate for yourself and take charge of your health. I was diagnosed with cancer but not given a death sentence. I am still here, 7 years later, sharing my story with you because I want you to live, too.

  1. Get tested. Early detection is the key.
  2. Share your story. Let someone else know what steps you took for survival. Let them know your journey so that they too can become vigilant in their health.
  3. Break the silence. It’s time to stop hiding.

Going Beyond Breast Cancer

I am pleased to announce that another sister of mine is breaking the silence related to a health issue experienced by thousands of women, infertility. The Rev. Dr. Stacey L. Edwards-Dunn is the founder and president of, Fertility for Colored Girls, NFP (FFCG).

FFCG has been around for roughly four years and has made its mission to be a resource, advocate, and fertility coach for men and women looking to create the families of their dreams.

FFCG has been bringing awareness to the issue of fertility among black and brown women across the nation. The organization has 7 chapters in 7 metropolitan areas and is looking to open 5 more chapters this year.

Dr. Edwards-Dunn just released a book, Hold on to Hope: Stories of Black Women’s Fertility, Faith, & Fight to Become Mommies earlier this month. The book is to help other women know their options for creating the family they long to have. Dr. Edwards-Dunn is working to save a sister. I am here because my sister saved me. Who will you save?

More information about Rev. Dr. Stacey L. Edwards-Dunn’s book can be found at www.drstaceyledwardsdunn.com

 

 

 

Health is Wealth

Health is Wealth

In the middle of lively conversation over dinner with a friend recently, he paused, closed his eyes, and took a deep breath while placing his hand over his chest. The pain was evident on his face. When I asked what was wrong, he shared that he had been experiencing chest pains and fatigue with regular occurrence.

“Have you been to the doctor?” I asked.

“Nah. It’s probably anxiety. I’ve been stressed at work lately.”

We talked honestly about the severity of his symptoms and when they started. And because we’re cool, I asked about the results from his latest physical examination. Turns out, not only had he not seen a doctor about his recent episodes, he had not had a regular check-up in three years. I urged him to go to the doctor as soon as possible in the event that his symptoms were evidence of a significant illness.

Health is wealth.

African Proverb

If health is wealth, and it is, then many African Americans are guilty of not knowing the balance in our accounts. Meaning, annual check-ups and preventative care are not what we do. For my friend, it was a perceived lack of time that moved annual doctor’s visits to the bottom of his list of priorities. I can identify with him. While I do not skip my annual visits to my primary care physician and gynecologist, often when I am sick, I ignore the symptoms. My husband has to gently encourage me to call the doctor. Between keeping up home, shuttling our girls to their activities, ministry, and work, who has time to sit in a waiting room for hours?

For others, lack of insurance coverage, fear of disease, and historic exploitation of black bodies in medical science that fostered a distrust of doctors keeps them from scheduling preventative exams and following up on symptoms. The reality is that preventative care costs less than treating a preventable disease and browsing Dr. Google can invoke more fear that having concrete information and making informed decisions about your health. There is also the systemic racism, trauma and devaluing of our bodies that African Americans have and continue to face — experiences that have caused us to normalize pain to the point that we ignore the signs when our bodies are suffering. I am reminded of the woman recorded in Luke 13:10-17 who was bent over for eighteen years. The Bible does not tell us that at any point she sought healing. She went about her business living in chronic pain until Jesus saw her and healed her.

We are living in grind culture, where many of us skimp on sleep and spend countless hours scrolling on devices while eating conveniently packaged foods packed with sodium, fat, and sugar. And although African Americans are living longer in general, reports show that younger African Americans (18-49) are afflicted with and dying of treatable diseases like heart disease, stroke, and complications from diabetes at an alarming rate, according to the CDC. In fact, younger African Americans are living with diseases that commonly affected older adults. The stressors from unemployment, underemployment, poverty, and lack of access to healthcare negatively impacts their health. We are living longer, but we are getting sick earlier.

I shall not die, but I shall live, and recount the deeds of the Lord.

Psalm 118:17 (NRSV)

What are we to do? The first thing is to make a decision to live. Part of that decision is to make annual physical examinations a priority. As the proverb goes, “An ounce of prevention is worth a pound of cure.” I schedule all of my appointments—annual physical, gynecological exam, mammogram, and eye examination around my birthday. Doing so helps me to remember my appointments and also helps me to recognize the blessed gift of life that God has given me to steward.  The other part of that decision to live is to listen to our bodies and to follow up with a doctor if even the slightest thing is off, with the recognition that we are worthy of care and that we do not have to live with chronic pain and disease.

Because our health is so valuable and important, I would suggest finding doctors that you feel comfortable with, that you can trust, and that are sensitive to your particular needs. Word of mouth from family, friends, and coworkers is the best way to find a good doctor. Developing a relationship with a doctor will also allow them to know your baseline levels, recognize patterns in your health, and know immediately when something needs additional attention.

The bottom line is that we have to see our doctors as if our lives depend on it…because they do. Whether you need to cram in a visit to the health center in-between college classes or you are scheduling your very first mammogram, here’s a list of the exams you need by decade, courtesy of Tri-City Medical Center:

For informational purposes only. The information in this article is not intended to replace a one-on-one relationship with a qualified health care professional and is not intended as medical advice.


Rev. Donna Olivia Owusu-Ansah is a preacher, chaplain, teacher, artist, writer, thinker, and dreamer who loves to study the Word of God, encourage others, and worship God. Rev. Owusu-Ansah holds a BS in Studio Art from New York University, an MFA in Photography from Howard University, and a Master of Divinity, Pastoral Theology, from Drew University. You can check out her website at https://www.reverendmotherrunner.com.

Feeding your Temple: Body, Mind, and Spirit

Feeding your Temple: Body, Mind, and Spirit

In college, I was quite the busy-body. I found my self-worth in participating in every possible activity, club, and organization. I was in the band, played tennis, and a member of student council. I was also a member of the student television news station, volunteered with the Chapel every Sunday, and I pledged a sorority. Can you say, “busy?!” The less I slept, the more meals I skipped, and the more coffee I drank, the more valuable I felt.

I was not taking care of my temple. Instead, I was abusing it as if that was a way to win God’s approval. As I write this now, it sounds so silly. I’ve matured a lot. But in my younger years, I had some serious insecurities and lacked self-worth. I literally hated everything about the body I was in. I hated my mind, I hated my body, and I hated my spirit. As a result, every part of me was mistreated by…me.

Thankfully, I’ve learned a lot since my college days. I’ve learned that there is nothing I can do to earn God’s love and make him value me more than He already does. How could I forget that He was the one who formed me in my mother’s womb? How could I forget that He created me in His own image? How could I not honor Him by taking care of the body, mind, and spirit that He formed—in detail—when He created me?

Since taking care of myself was a completely foreign concept to me, it didn’t happen overnight. I didn’t wake up one morning and begin eating healthy meals and taking time for myself. I truly struggled with how to start valuing and treating myself like a daughter of The King.

“Dear friend, I hope all is well with you and that are as healthy in body as you are strong in Spirit.” — 3 John 1:2

 

God is glorified when we take care of the temples He gave us, and it is important that we do so in body, mind, and spirit.

Feeding your temple: BODY

In college, I was barely eating. I skipped meals to make time for all of my activities, and when I did eat, I only ate cereal, ramen noodles, and fries from the dollar menu at fast-food restaurants. Talk about nutritious! However, I realized that I wanted to be energized to do work for God’s Kingdom, but the way I was fueling my body was leaving me tired, weak, and lethargic. It was time for a diet change.

If you’re active on social media and spend your life online—like most people do—you are most likely aware of the constant pressure to eat healthier, lose weight, and feel your best. However, with my focus being on God’s glory, I chose to change my diet to ensure that His temple that He created was thriving. He is my motivation for healthy living – not how my body looks.

So, if you are looking to make some changes in how you feed your temple, here are a few tips:

Take time out to prepare three healthy meals a day. Breakfast is as important as lunch and lunch is as important as dinner. It is so tempting to skip a meal when we are on-the-go, but we are truly doing ourselves a disservice when we do this.

Start small. It can be overwhelming to change every eating habit at once. Start with breakfast. Set an alarm for 20 minutes earlier than you normally get up to allow yourself time to prepare and eat a nutritious meal.

If you have a sweet tooth like me, look up healthy alternatives online to satisfy that craving. My go-to is a chocolate peanut butter smoothie that is made with raw cacao powder and organic peanut butter. Super healthy and super delicious! It doesn’t have to be hard to feed your body delicious, nutritious meals. You will feel more energized and your body will thank you.

Feeding your temple: MIND

I believe that this falls under the category of taking time for yourself. Let’s face it. We are busy people. This society thrives on “busyness.” I fell into that trap in college and I still have trouble with it today as a wife and mom.

Things have to get done! There is no time for myself! Sleep? What is that?

Sound familiar?

However, if we neglect sleep and fail to take time for ourselves, our minds become cluttered. And, I realized that when my mind is cluttered, I struggle to hear God and stay in tune with His presence. I am here to glorify the Lord through my every step and if I can’t hear Him, due to a cluttered mind, how can I glorify Him?

I recommend writing down areas in your life that you can see as mind clutter. For me, it’s social media, my busy schedule, and a constant need for perfectionism. Once you figure out what your areas are, write down ways to clear your mind from these things.

I’m going to make a commitment to find time every day to be social media-free. I am going to commit to saying “no” to something on my agenda that just isn’t important and replace that time with something a bit more relaxing.

What commitments can you make to clear your mind? Whatever they are, write them down to help you stick to them. Place Post-It Notes around your house with your commitments. Set reminders on your phone. Write them down in your planner. Ask an accountability partner to remind you of your commitments.

Feeding your temple: SPIRIT

Finally, it is important to feed your spirit. It is the spirit of The Lord that lives inside of you. It is the spirit that God intricately created that makes you, YOU. It is your relationship with the Holy Spirit. Feeding this area of your temple is so important.

However, can I be honest with you? This is the hardest area for me to feed and keep healthy. Can anyone else relate? Why is it easier to scroll through social media than it is to open our Bibles and receive the Truth?

I’ll be the first to admit that planning a healthy meal is much easier for me than devoting time to my relationship with God. I am so thankful for God’s grace and strength in this huge area of weakness for me.

One thing that has truly helped me in this area is getting connected in my church community. Serving in the Church and being a part of small groups Bible studies are both ways to fuel my spirit. They are great ways to ensure that I am taking time out to refresh with The Lord.

However, alone time with the Lord is equally as important and should be a part of our daily lives.

One of my favorite ways to incorporate alone time is to worship in the car while I am driving. No phone, no distractions, just me and the Lord.

While working on your relationship with God, keep in mind that we are not earning God’s approval by spending more time with Him. We cannot do anything to make Him love us more. We are strengthening our relationship with Him because He desires us so much! Don’t let the enemy turn your efforts into a guilt trap when you fall short, because, the truth is, we will always fall short. We are human.

Our Heavenly Father gave each of us these beautiful temples that were made in His image. It is imperative that we take care of them and treasure them just as He treasures us. When we do so, we are making ourselves even more available for Him to use us at His will for His glory, and we are fueled and ready to live the lives that God has called us to live.

What are some healthy ways that you use to feed your temple? Share them below.

Sickle Cell Patients Suffer Poor Care, Discrimination — And Shorter Lives

Sickle Cell Patients Suffer Poor Care, Discrimination — And Shorter Lives

NeDina Brocks-Capla sits in her kitchen in San Francisco. Her son Kareem Jones died at age 36 from sickle cell disease. (Jenny Gold/KHN)

For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house — the bathroom on the second floor.

“It was really hard to bathe in here, and I found myself not wanting to touch the walls,” she explained. The bathroom is where Brocks-Capla’s son Kareem Jones died in 2013 at age 36, from sickle cell disease.

It’s not just the loss of her son that upsets Brocks-Capla; she believes that if Jones had gotten the proper medical care, he might still be alive today.

Sickle cell disease is an inherited disorder that causes some red blood cells to bend into a crescent shape. The misshapen, inflexible cells clog the blood vessels, preventing blood from circulating oxygen properly, which can cause chronic pain, multi-organ failure and stroke.

About 100,000 people in the United States have sickle cell disease, and most of them are African-American.

Patients and experts alike say it’s no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. By 2005, life expectancy had dipped to 38 for men and 42 for women.

Sickle cell disease is “a microcosm of how issues of race, ethnicity and identity come into conflict with issues of health care,” said Keith Wailoo, a professor at Princeton University who writes about the history of the disease.

It is also an example of the broader discrimination experienced by African-Americans in the medical system. Nearly a third report that they have experienced discrimination when going to the doctor, according to a poll by NPR, Robert Wood Johnson Foundation and Harvard T.H. Chan School of Public Health.

Dr. Elliott Vichinsky examines Derek Perkins at the sickle cell center at UCSF Benioff Children’s Hospital Oakland, which sees both children and adults. (Jenny Gold/KHN)

“One of the national crises in health care is the care for adult sickle cell,” said leading researcher and physician Dr. Elliott Vichinsky, who started the sickle cell center at UCSF Benioff Children’s Hospital Oakland in 1978. “This group of people can live much longer with the management we have, and they’re dying because we don’t have access to care.”

Indeed, with the proper care, Vichinsky’s center and the handful of other specialty clinics like it across the country have been able to increase life expectancy for sickle cell patients well into their 60s.

Vichinsky’s patient Derek Perkins, 45, knows he has already beaten the odds. He sits in an exam room decorated with cartoon characters at Children’s Hospital Oakland, but this is the adult sickle cell clinic. He’s been Vichinsky’s patient since childhood.

“Without the sickle cell clinic here in Oakland, I don’t know what I would do. I don’t know anywhere else I could go,” Perkins said.

When Perkins was 27, he once ended up at a different hospital where doctors misdiagnosed his crisis. He went into a coma and was near death before his mother insisted he be transferred.

“Dr. Vichinsky was able to get me here to Children’s Hospital, and he found out what was wrong and within 18 hours — all I needed was an emergency blood transfusion and I was awake,” Perkins recalls.

Kareem Jones lived just across the bay from Perkins, but he had a profoundly different experience.

Jones’ mother, Brocks-Capla, said her son received excellent medical care as a child, but once he turned 18 and aged out of his pediatric program, it felt like falling off a cliff. Jones was sent to a clinic at San Francisco General Hospital, but it was open only for a half-day, one day each week. If he was sick any other day, he had two options: leave a voicemail for a clinic nurse or go to the emergency room. “That’s not comprehensive care — that’s not consistent care for a disease of this type,” said Brocks-Capla.

Brocks-Capla is a retired supervisor at a worker’s compensation firm. She knew how to navigate the health care system, but she couldn’t get her son the care he needed. Like most sickle cell patients, Jones had frequent pain crises. Usually he ended up in the emergency room where, Brocks-Capla said, the doctors didn’t seem to know much about sickle cell disease.

When she tried to explain her son’s pain to the doctors and nurses, she recalled, “they say have a seat. ‘He can’t have a seat! Can’t you see him?’”

Studies have found that sickle cell patients have to wait up to 50 percent longer for help in the emergency department than other pain patients. The opioid crisis has made things even worse, Vichinsky added, as patients in terrible pain are likely to be seen as drug seekers with addiction problems rather than patients in need.

NeDina Brocks-Capla stands in her living room in San Francisco. She made a shrine filled with memories of son Kareem Jones, who died of sickle cell anemia in 2013. (Jenny Gold/KHN)

Despite his illness, Jones fought to have a normal life. He lived with his girlfriend, had a daughter and worked as much as he could between pain crises. He was an avid San Francisco Giants fan.

For years, he took a drug called hydroxyurea, but it had side effects, and after a while Jones had to stop taking it. “And that was it, because you know there isn’t any other medication out there,” said Brocks-Capla.

Indeed, hydroxyurea, which the FDA first approved in 1967 as a cancer drug, was the only drug on the market to treat sickle cell during Jones’ lifetime. In July, the FDA approved a second drug, Endari, specifically to treat patients with sickle cell disease.

Funding by the federal government and private foundations for the disease pales in comparison to other disorders. Cystic fibrosis offers a good comparison. It is another inherited disorder that requires complex care and most often occurs in Caucasians. Cystic fibrosis gets seven to 11 times more funding per patient than sickle cell disease, according to a 2013 study in the journal Blood. From 2010 to 2013 alone, the FDA approved five new drugs for the treatment of cystic fibrosis.

“There’s no question in my mind that class and color are major factors in impairing their survival. Without question,” Vichinsky said of sickle cell patients. “The death rate is increasing. The quality of care is going down.”

Without a new medication, Jones got progressively worse. At 36, his kidneys began to fail, and he had to go on dialysis. He ended up in the hospital, with the worst pain of his life. The doctors stabilized him and gave him pain meds but did not diagnose the underlying cause of the crisis. He was released to his mother’s care, still in incredible pain.

At home, Brocks-Capla ran him a warm bath to try to soothe his pain and went downstairs to get him a change of clothes. As she came back up the stairs, she heard loud banging against the bathroom walls.

“So I run into the bathroom and he’s having a seizure. And I didn’t know what to do. I was like, ‘Oh come on, come on. Don’t do this. Don’t do this to me.’”

She called 911. The paramedics came but couldn’t revive him. “He died here with me,” she said.

It turned out Jones had a series of small strokes. His organs were in failure, something Brocks-Capla said the hospital missed. She believes his death could have been prevented with consistent care — the kind he got as a child. Vichinsky thinks she is probably right.

“I would say 40 percent or more of the deaths I’ve had recently have been preventable — I mean totally preventable,” he said, but he got to the cases too late. “It makes me so angry. I’ve spent my life trying to help these people, and the harder part is you can change this — this isn’t a knowledge issue. It’s an access issue.”

A nurse takes patient Derek Perkins’ blood pressure at the sickle cell center at UCSF Benioff Children’s Hospital Oakland — one of only three places in California that offer specialized services for adults with sickle cell disease. (Jenny Gold/KHN)

Vichinsky’s center and others like it have made major advances in screening patients for the early signs of organ failure and intervening to prevent premature death. Patients at these clinics live two decades longer than the average sickle cell patient.

Good care for sickle cell requires time and training for physicians, but it often doesn’t pay well, because many patients are on Medicaid or other government insurance programs. The result is that most adult sickle cell patients still struggle even to access treatments that have been around for decades, Vichinsky said.

The phenomenon is nothing new — the disease that used to be known as sickle cell anemia has had a long and sordid past. It was first identified in 1910 and helped launch the field of molecular biology. But most of the research was used to study science rather than improving care for sickle cell patients, Vichinsky said.

In the 1960s and ’70s, sickle cell became a lightning rod for the civil rights movement. At the time, the average patient died before age 20. The Black Panther Party took up the cause and began testing people at their “survival conferences” across the country.

“I’m sure we tested over four-and-a-half-thousand people for sickle cell anemia last night — and I think that the voter registration is running neck and neck with it,” Black Panther Party Chairman Bobby Seale told news crews at an event in Oakland in 1972.

The movement grew, and Washington listened. “It is a sad and shameful fact that the causes of this disease have been largely neglected throughout our history,” President Richard Nixon told Congress in 1971. “We cannot rewrite this record of neglect, but we can reverse it. To this end, this administration is increasing its budget for research and treatment of sickle cell disease.”

For a while, funding did increase, newborn screening took hold and by the 1990s, life expectancy had doubled, with patients living into their 40s. But over time, funding waned, clinics closed, and life expectancy started dropping again.

Vichinsky pushes against that trend for patients like Derek Perkins. The father of four looks healthy and robust, but like most sickle cell patients, he has episodes of extreme pain and has problems with his kidneys, heart, hips and breathing. Keeping him thriving requires regular checkups and constant monitoring for potential problems.

“The program Dr. Vichinsky is running here, I feel I owe my life to [it],” said Perkins. “If it wasn’t for him and the things that he did for me, my family wouldn’t have me.”

KHN’s coverage of children’s health care issues is supported in part by a grant from The Heising-Simons Foundation.

The promise of personalized medicine is not for everyone 

The promise of personalized medicine is not for everyone 

Video Courtesy of the Northwestern University Feinberg School of Medicine


Could your medical treatment one day be tailored to your DNA? That’s the promise of “personalized medicine,” an individualized approach that has caught the imagination of doctors and researchers over the past few years. This concept is based on the idea that small genetic differences between one person and another can be used to design tailored treatments for conditions as diverse as cancer and schizophrenia.

In principle, “personalized” is not meant to mean one person but not another, though that may not turn out to be the case. Existing genetic and medical research data conspicuously underrepresent certain populations.

Case in point: Last month, researchers published a surprising study on youth suicide rates. Scientists long believed that white youth had the highest rates of suicide. But, examining data from the Centers for Disease Control and Prevention, they found that suicide rates for African-American children under the age of 13 were twice as high as whites.

This finding turned long-held assumptions about racial imbalances in mental illness on its head. It could not be explained by economic circumstances, suggesting that there are other factors at play, perhaps even genetic factors. Suicide is a complicated personal act, but science has shown that genes play an important role.

This unexpected result may have implications for prevention and treatment based on genes – in other words, personalized medicine. But the state of current genetic research suggests that African-Americans will likely miss out on many of the potential future benefits of personalized medicine.

As lead author Jeffrey Bridge of the Nationwide Children’s Hospital in Ohio noted to
the Washington Post, “Most of the previous research has largely concerned white suicide. So, we don’t even know if the same risk and protective factors apply to black youth.”

Few experts have studied the possible genetic causes for African-American suicide, focusing instead on environmental and social reasons.

While most mental illnesses such as depression are first diagnosed in adulthood, they actually have their origins early in development, as genes and the environment interact to shape the brain of a growing fetus. For example, my colleagues and I published a study in May showing that genes and pregnancy problems combine to increase the likelihood of schizophrenia.

This should cause some alarm, because African-American women have much higher rates of pregnancy complications. Black infants die at twice the rate of white infants. Again, this is not explained by socioeconomic reasons.

In short, a higher rate of pregnancy problems likely puts African-Americans at increased risk of developing mental illnesses, perhaps explaining the noticeable increased rate of suicides. Additional genetic data on this population could potentially illuminate the issue.

To better understand genes that increase the risk for mental illness, researchers study the brains of people who have died. They examine how genetic differences could have led to changes in the brains of people who developed these conditions. This is one of the best ways to understand any brain disorder at a biological level.

But African-Americans are underrepresented in large-scale genetic and neuroscience studies. One 2009 analysis revealed that 96 percent of participants in large genetic studies were of European descent. When researchers looked at the matter a couple of years ago, they found that the proportion of people with African ancestry in these studies had increased by only 2.5 percent. Similarly, studies of African-American brains are almost nonexistent.

Why the low participation rate? One reason is that researchers favor populations that are genetically more homogeneous to ensure a study’s accuracy. Individuals of European ancestry are more alike genetically than are African-Americans.

Some experts have posited that African-Americans are less likely to participate in genetic studies due to a lack of trust with the medical community.

At the Lieber Institute for Brain Development, where I work, people can donate the brains of family members who wished to contribute to scientific research. We have the largest collection of African-American brains donated to study mental illness, though it’s relatively small in comparison to the availability of Caucasian brains. In our experience, the donation rate for African-American families is comparable to that of white families, suggesting that lack of trust may not be as widespread as believed.

Without studies focused on the African-American brain, scientists will struggle to fully understand how any possible unique genetic risk in the African-American population translates into prevention and treatment for virtually all disorders that involve the brain, including suicide.

Researchers have to invest in correcting this shortcoming before the personalized medicine train is so far out of the station that the African-American community cannot get on it.

Daniel R. Weinberger, Director of the Lieber Institute for Brain Development and Professor, Departments of Psychiatry, Neurology, Neuroscience and The Institute of Genetic Medicine, Johns Hopkins University

This article was originally published on The Conversation.