I’m trying to reverse African-Americans’ distrust of medicine one blood donor at a time

African-Americans have historically received less-than-optimal medical care, in part because they don’t trust physicians or the health care system. They come by this distrust honestly: think of the exploitation of African-American men in the Tuskegee experiment, or the unauthorized use of Henrietta Lacks’s cells for scientific discovery and monetary gain.

I’m trying to change this dynamic one patient and one blood drive at a time.

As a pediatric hematologist, I treat children with blood disorders like anemia, leukemia, thalassemia, and sickle cell disease. The latter affects about 100,000 Americans, most of whom are African-American.

They have a genetic disorder that causes the oxygen-carrying hemoglobin in their red blood cells to change shape in response to dehydration, infection, stress, and other factors. This makes the normally disc-shaped red blood cells take on a crescent or sickle shape. These are prone to stacking together, creating clumps of red blood cells that get stuck in the circulatory system. This can cause excruciating pain, as well as anemia, tissue damage, stroke, and even fatal organ failure.

Individuals with sickle cell disease may need a transfusion of normal red blood cells with normal hemoglobin to replace their abnormal red blood cells as a way to treat an acute episode. Others need regular transfusions, perhaps as often as once a month.

It’s important that blood from a donor “match” that of the recipient, otherwise the recipient’s immune system will attack and break down the donated blood. The primary major antigens on red blood cells are the ABO blood group and the D protein. But there are also minor blood-matching proteins, which become increasingly important for individuals who need frequent transfusions, like people with sickle cell disease. For them, blood from African-Americans provides the best match.

Individuals with sickle cell disease develop fewer reactions to blood donated by African-Americans. Because they are less likely to break down transfused blood cells, they don’t have to come back to the hospital as often to get blood. That means they don’t have to miss another half day of school and their parents don’t need to miss another half day of work.

Unfortunately, blood from African-Americans is in short supply. While African-Americans comprise nearly 13 percent of the U.S. population, they represent less than 1 percent of blood donors. Distrust of doctors and the health system comes into play here.

That’s a key reason I got involved in a blood donor program that goes into African-American communities in the greater Chicago area to recruit new donors for children with sickle cell disease. It’s a joint endeavor between the Ann and Robert H. Lurie Children’s Hospital of Chicago and the local American Red Cross chapter. It reaches out to people who are invested in their communities, giving of themselves, saving lives and making a real difference.

We choose sites based on existing relationships with the American Red Cross and where there’s a good chance of reaching African-Americans. I’ve gone to my children’s school and my father’s church to ask for individuals to sign up for a blood drive. We hold drives at businesses and neighborhood gatherings and with African-American sororities and fraternities. These drives occur at the schools and churches and businesses, but we sometimes use a bloodmobile for them.

My being African-American opens doors for the program and helps me connect with potential donors. I once gave a speech at a health fair for the Central Illinois chapter of 100 Black Men. As I described the need for men like us to step up and be blood donors for children with sickle cell disease, I saw a lot of heads nodding favorably. Men came up to me after speaking to say “Thank you, brother. I never knew there was a need.”

The team’s effort is worth it. Since the program started 2008, we have collected more than 4,000 units of blood from African-American donors for sickle cell patients. Because each unit of whole blood can be divided three ways — into red blood cells, plasma, and platelets — the program has benefited several thousand people.

In addition to directing the program, I’m also a donor. In fact, I gave blood for the first time as a part of the program. I recently earned my one-gallon pin, after donating my eighth pint of blood. I wear it with pride.

Collecting better-matched blood for patients with sickle cell disease is just the beginning. African-Americans with end-stage kidney disease are less likely to receive a living kidney donation than Caucasians, Hispanics, and Asians. African-Americans with leukemia are also waiting. There are so few African-American donors in the national bone marrow donor registry that African-Americans must wait longer to find a match than some of their Caucasian colleagues. Shared ethnicity can save lives.

Erasing decades of distrust won’t be easy, and it won’t happen suddenly. As a society, we need to encourage more African-Americans to go into STEM fields and medicine so they can help de-stigmatize medical therapies that aren’t being equitably provided to African-Americans.

We need to leave behind the ghosts of racism in medicine. Better care for all, including those who have been traditionally left out, will help decrease health care costs and allow us to all live longer, healthier lives.

What I have learned as a physician who cares for a myriad of patients is that we are all more similar than we think are. As humans, we are all a match.

A. Kyle Mack, M.D., is an attending pediatric hematologist at the Ann and Robert H. Lurie Children’s Hospital of Chicago and an assistant professor of pediatrics at the Northwestern Feinberg School of Medicine. He is on the board of directors of the Greater Chicago and Northern Illinois American Red Cross and a Public Voices Fellow at The OpEd Project with Northwestern University.