Three years ago, 40-something Dorothy Vernon Brown had what she describes as the perfect life. Like so many other ambitious Caribbean nationals, she had moved from Jamaica to Canada in search of better opportunities. Married to the man of her dreams for more than 20 years, she had two happy and healthy kids, a supportive church family, great friends, a beautiful home, actively volunteered, and owned a thriving marketing consultant business.
Then, in the summer of 2013, her world fell apart. After returning home from a Jamaican vacation, she noticed a bruise on her leg. Further evaluation revealed acute myeloid leukemia (AML), a lethal adult blood cancer in which the bone marrow makes abnormal cells and carries a five-year survival rate of just 25 percent. Chemotherapy proved insufficient. One year later her cancer returned, with a bone marrow transplant now her only hope for survival.
Dorothy's search for a life-saving bone marrow match has turned out to be far more difficult than she could have ever imagined -- a reflection of the fact that people of color are woefully under-represented on bone marrow registries throughout the world. The result: If you are someone of African ancestry, as Dorothy is, you are far more likely than your Caucasian peers to die while waiting. Only 7 percent of potential adult donors on the registry are black, while 67 percent are white, according to the National Marrow Donor Program (NMDP) and Be The Match.
For bone marrow donation to succeed, the donor and recipient need to have similar genetic makeup. Dorothy's Irish and African background would complicate her search in any case, but an even bigger problem is that she lives in Canada where she's been told that less than 1 percent of people on the donor list are of African ancestry. She also searched the NMDP, the world's largest and most diverse registry with more than 10.5 million potential donors, and had no success due to low representation of black donors. Although Dorothy is from the Caribbean, a place rich in potential donors, she said that after conducting an exhaustive search she found no official bone marrow registry in the region.
One of the reasons people of color are under-represented is their historical mistreatment by the medical establishment and resulting distrust. Many are reminded of the Syphilis Study at Tuskegee, where treatment was withheld from African-American men infected with syphilis in order for the researchers to learn the natural course of the disease. There is also the famous case of Henrietta Lacks, an African-American woman treated in the 1950s at Johns Hopkins Hospital whose cells were used for medical research without her permission. A 2002 Institute of Medicine Report showed that racial and ethnic disparities in health care exist even when insurance status, income, age, and severity of conditions are comparable. Even more recently, a study released in September 2015 showed that kids weren't spared when it came to health disparities -- black kids with appendicitis received less-effective pain medications than white kids.
Some years back, I saw firsthand the result of this fear and distrust when someone in my extended family died waiting for a bone marrow donation after being diagnosed with aplastic anemia. There was a 25 percent chance of sibling match, but his family members declined testing.
Poverty and concerns about cost of testing are other likely reasons for the deadly shortfall. If someone is struggling financially, it's easy to see why signing up to be a bone marrow donor for a stranger would not be a high priority. Other probable factors include lack of education about the process as well as the impact of bone marrow donation, the view that leukemia and other blood cancers are not major health issues since the incidence is so small compared to other well-known diseases, religious objections to donation, and social norms and traditions. As one attendee tellingly confessed during a community health talk I gave, "That's just not something we do."
It doesn't have to be this way. Consider that transplant surgeon and donor advocate Dr. Clive O. Callendar of Howard University Hospital doubled the number of African-American organ donors in the District of Columbia simply by providing awareness and education and clearing up misconceptions. One study showed that an education program that targeted the African-American community was able to overcome some of the barriers to bone marrow donation.
How can we build on such efforts? We might start by educating African-American physicians, who tend to have an easier time overcoming the distrust of patients of color and can pass on good information. My own medical training, although done in a city with a high percentage of minorities, did not place great emphasis on encouraging me to educate patients about saving lives through organ or tissue donation. Perhaps it was assumed it would be done but if you ask many minority physicians, it isn't. In fact, I took it upon myself to coordinate a bone marrow drive while still a second-year medical student.
Another promising strategy: Carry this message to places where people of color congregate, including black churches, barber shops, hair salons, and via media such as urban and community radio shows such as my own.
More than two years after her diagnosis, Dorothy continues to search for a matching donor. If she could speak to you herself, here's what she would say: If you are of African ancestry and between the ages of 18-44, you are desperately needed and you can actually save her life or the life of someone else who is also waiting. The initial screening process is quick and painless, nothing more than a simple swabbing of the cheeks to get you on the donor list. If a match is found, more testing follows and the methods for stem cells or bone marrow donation are minor inconveniences; either like donating blood or via a needle stick to your hip bone. She would ask you to do what you can to potentially save a life -- and to spread the word so that far fewer people like her die while still waiting.
Diane A. Thompson, MD is an Assistant Professor of Physical Medicine and Rehabilitation, a medical director of the acute inpatient rehabilitation unit at Columbia University Medical Center, host of a radio show and health podcast Health Talk with Dr. Diane MD, and a Public Voices Fellow of the OpEd Project. You can contact her at her website, on her Facebook page, or on Twitter at @DrDianeMD.