Good Morning America host Robin Roberts knows how it feels to lose the lottery twice, then sort of win it. So does everyone in my family.
Here’s how she lost twice: Roberts was diagnosed with pre-leukemia secondary to breast cancer, which means the treatment for her first illness caused the second. My treasured sister-in-law Theresa ended up with real leukemia as a consequence of all the chemo and radiation she endured (along with her lumpectomy). About one in eight women contract breast cancer, and of that group a much smaller percentage get sick again.
Here’s how they won: both have siblings who were perfect matches for their necessary bone marrow transplants. Roberts, who has now passed the critical 100-day mark after her transplant, was especially lucky. Siblings have only a 30% chance of matching, and her sister did. For Theresa, one of her brothers matched.
If they hadn’t been able to find matches in their families, and had to go to the bone marrow registries, their odds would’ve quickly separated along color lines. The best chance of finding a genetic match lies with those of a similar racial or ethnic background. Theresa is white, and so are about 70% of the potential donors now registered. Roberts would be looking at the smaller piece of the pie: just 30% of listed donors are members of ethnic minorities – and that is the sum total of African Americans (7%), Asians (7%), Hispanics (10%) and others of Native American, Pacific Islander, and multiple races.
Here’s another way to look at it: Theresa would have a better than 90% chance of finding a registry match. Roberts’ odds: about half that. Instead of wishing her a speedy recovery, ABC-TV would likely be hosting bone marrow drives around the country in hopes of finding a match for their morning anchor. Her doctors would also be searching the registries for an umbilical cord blood match — often the route for ethnic minorities unable to find a suitable bone marrow donor.
Why the hesitation among minority communities to join the registries? Everyone points to the historical distrust of the medical system, and the notorious Tuskegee syphilis experiments from 1932-1972. There’s also the well-documented access to healthcare disparities between whites and blacks. Among some faiths, there’s a stigma attached to bone marrow donation, meaning that it’s too important a part of the body to be donated (for the record, bone marrow gets regenerated soon after extraction).
There’s also the fear of needles. A lot of people think donating bone marrow involves big needles shot into the small of the back. That’s not usually the case, at least not anymore. In Theresa’s case, her brother Victor got injections for a week, releasing bone marrow into his bloodstream. It was extracted from his arm in a procedure similar to a blood donation (though bone marrow looks more like tomato soup than blood).
Roberts is doing what she can to increase awareness of the need for more donors, and her African-American face on all those bus and subway posters around New York may help make it more appealing to potential donors of similar heritage.
Let’s hope so. I’ve seen first-hand how tough it is to navigate the tragic two-fer of breast cancer and then a secondary blood cancer. The odds of survival should not be based on whether a woman was born black or white.
Jim Fox is director of communications at New York Blood Center, which serves as the regional arm of the Be the Match(R) registry for Greater New York. His fictionalized account of his sister-in-law’s struggle, The Matriarchs, was published in 2011 (all proceeds go to bone marrow registries).
