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.

advertisement

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.

Leave a Comment

Please enter your name.
Please enter a comment.

  • Paul, your blood may go to displace other blood more suitable for treating sickle cell, which is just as good. Maybe what is needed is a way to track which blood is best for sickle cell, but that risks ripping open an old wound which is the separation of white and black blood a couple generations ago. This kind of thing would have to be approached with the utmost sensitivity.

  • The late Victor Herbert MD proposed that healthy people with hemochromatosis be allowed to donate blood to increase the supply. These people accumulate iron at a dangerously high rate and frequent blood withdrawls are necessary, but this blood is not used for donation. Hemochromatosis is a genetic disease, so I don’t know if it occurs very much among Afro-Americans. If it does, maybe this is a supply that can be used.

    • The FDA rules had changed years ago and allow hemochromotosis donations, though policies may vary with local blood banks. About a year ago, the hemochromotosis question has been removed from the donor survey so it is even easier to donate. Prescriptions for phelbotomies are required now only if donations are more frequent than normal (to reduce or maintain iron or ferritin levels for the donor).

      The primary mutation for hemochromotosis is associated with Celts or northern European ancestry which can still apply to African Americans but maybe uncommon. I am white, O-neg and a “rare blood type.” I have no idea what segment of the population my blood helps. I would be happy if it’s going to chronic sufferers of sickle cell anemia.

  • I am surprised you did not mention Dr. Charles Drew or your own racial affiliation. One of the problems of inherent systematic racism is the lack of a diverse multiracial and ethnic medical system. When one is onsite at a well known medical center this is visible in the pyramid scheme of white on top and others down below.
    So much depends on the pipeline of education who is who and where is where.

    • You must have missed the author saying this: “My being African-American opens doors for the program and helps me connect with potential donors.”

      Pat Skerrett
      Editor, First Opinion

  • I am so proud to observe your outstanding work in your chosen profession, to which you introduced by me, and to which you have far exceeded, just as you have done in your marriage and parenting, having taken that gigantic endeavor to several levels beyond. You and Kristen have made me the proudest father on this planet!

  • Dr. Mack, your mission is inspiring and I am proud to see you leading by example to partner in the community to dispell myths and increase awareness.

  • As a mother of s child with sickle cell and a daughter of a father that passed away from this disease. Blood donations are so important. I donate a lot because I have a rare blood type, but I would love to find out if I could donate to people with sickle cell sense I have the trait myself? I hope more people in our community step up and donate.

Sign up for our Daily Recap newsletter

A roundup of STAT’s top stories of the day in science and medicine

Privacy Policy