Sick Children and Unhealthy Multiracial Politics
Project RACE began in Atlanta 22 years ago and the worst part of the day-to-day work comes with the realization that some very unhealthy politics are going on with sick children. I reached my limit today when I realized the politics crosses not only racial and ethnic lines, but in ways we never imagined.
A meaningful explanation means a look back. In the 1990s, we became aware of children suffering and dying with diseases of the blood such as leukemia. A well-known baseball player, Rod Carew, had three daughters and one of them, Michelle, was very sick. Rod was black, specifically of Panamanian descent and his wife was white, specifically of Polish and Jewish heritage. Their three daughters were multiracial.
A person who has a blood-related illness, such as cancer of the blood, lymphoma, or sickle cell anemia and who does not respond to treatments like chemotherapy, must have a bone marrow transplant to survive, or utilize cord blood, which is normally discarded after childbirth. In the 1990s, cord blood was just becoming a viable option. To find a donor of Michelle’s specific combined background would not be easy. The usual first attempt is to find a donor who is related to the patient. Michelle’s two sisters were found to be ideal matches for each other, but neither matched their sister. Strike one for Michelle. A search for an unrelated donor began.
We knew little at Project RACE about donor matching at the time. Always an advocate, I spoke with people who did know and was directed to call UNOS, the United Network for Organ Sharing. UNOS is by its own definition “the private, non-profit organization that manages the nation's organ transplant system under contract with the federal government.” They handle the database that manages all types of organ donation: hearts, lungs, bone marrow, tissue, livers, etc.
Of all donations, bone marrow is the only one that crosses racial and ethnic lines. In other words, you can get a kidney, blood transfusion, and other organs from anyone who matches the usual criteria, but for bone marrow, you must have a racial and ethnic match. The exact medical explanation is simple and I try to stay out of technical discussions of HLA (human leukocyte antigen) tissue typing and science. Yes, on a conscious, emotional level, we are all the same, yet there is a genetically undeniable difference when it comes to marrow matching.
Close contact between UNOS and the multiracial community should be important. However, we were not well-received by them. They would not even help us by allowing multiracial people to check a multiracial box on their donor forms. I did not understand it at the time, but the directors of UNOS told us they did not wish to deal with our specific community and we were shut out. Strike two for Michelle.
We thought if we held our own bone marrow donor drives and put the results into the UNOS database, all would be well. We found out that it’s not easy to just hold a donor drive. You must get trained medical personnel, a venue to hold it, sanitary conditions, and lots and lots of paperwork. It all would take time and Michelle’s body did not have the time. Strike three. Michelle died.
We held 17 bone marrow donor drives throughout the United States in one year. There is no telling how many lives we helped save, if any. We do know that we enlarged the pool of multiracial donors. UNOS still shut us out. Never-the-less, we continued.
Then, in the early 2000s, things began to change. We stopped hearing about UNOS and began hearing about an organization called “Be the Match,” which someone told us was a part of UNOS. Be the Match seemed more willing to work with us. Meanwhile, UNOS still refused to work with us or answer any questions. It turned out that “Be the Match” was a part of NMDP, the National Marrow Donor Program, not UNOS. NMDP claims to be the global leader in the world of donor politics.
We are not investigative journalists at Project RACE and all that really mattered to us then, as now, is that multiracial children are being best served by the medical community and as many lives as possible are saved. We held bone marrow donor drives with organizations like The American Red Cross and City of Hope, and Community Blood Banks. We do what we can.
Then in 2009, a little girl by the name of Shannon Tavarez became very ill. Her story received national attention because she played the role of Nala in The Lion King on Broadway. We were asked by a friend of the family to help find a donor. Enter yet another transplant organization, DKMS in New York. When I called them to offer help, they informed me that they were “in charge” of Shannon’s donor search and they would be the ones to help. The upper management people I spoke to at DKMS informed me that they were exclusive representatives for Shannon, appointed as such by her family. I was shocked and started to wonder why any potential life-saving help would be turned away. It didn’t make any sense.
DKMS bills itself as “the world’s largest bone marrow donor center.” We did some checking and found out they are based in Germany. They also state in the fine print that if you register and donate through them, you are added to the NMDP registry, which is basically Be the Match. But, Be the Match carefully makes it clear that they are not affiliated with DKMS. All of this is very unclear. Shannon’s mother’s heritage was African American, and her father was Hispanic, from the Dominican Republic. A cord blood donation was found, the transplant was successful, but Shannon died on November 1, 2010 from other complications. She was 11 years old.
The worst part of my job as executive director of Project RACE is hearing that a child has died. The business of saving lives and the apparent politics that have developed with organizations wanting exclusive rights to any child’s life is just wrong. Every time a new search is started, we begin the fight all over again. Every time, I wonder about the politics and tell myself it can’t continue.
At one point, I tried to understand why organizations like Be the Match don’t go to the place of birth as the starting point for a possible donor, especially if it would be another country. Why didn’t they try to have donor drives in the Dominican Republic for Shannon? Answers were hard to come by and included that most third world countries don’t have sanitary conditions that would allow for the necessary cheek-swabs. Language barriers and international politics also came to the forefront.
So what about DKMS, a German organization? Someone finally told me that Germany has the highest percentage of registered potential bone marrow donors than any other country. Why? Apparently, children are very well educated in Germany about the importance of signing up as donors. The schools teach the basic principals and reasons for them to become donors. I have been told that when German schoolchildren turn 18, they register to become donors on their birthdays, much the same as American children getting their drivers’ license! Why are we not following the German model?
Today I read about a 12 year old Vietnamese boy who lives in Georgia, not far from where Project RACE started. Noah has acute lymphoblastic leukemia. He was adopted by a white family, so it is known that a match won’t come from his adoptive family. I decided that even though Noah is not known to be multiracial, maybe we could help just by virtue of the fact that we have national members in locations where there could be large Vietnamese populations.
I’m a pretty good researcher, but after several hours, I could not find any contact information for this boy or his family. I sent an email to every email address in every article I could find to try to reach Noah’s family. Yet, every single time, the email came back as undeliverable.. Perhaps the family became leery of organizations that tried to contact them. Maybe they were told that an “exclusive” arrangement was best for Noah. I honestly have no idea. I only know that unhealthy politics must stop.
Susan Graham for Project RACE