Equal Opportunity for those Needing Bone Marrow Transplants
Advocacy When I was diagnosed with leukemia in 1991, the doctor told me to go home and prepare my bucket list.
While there was a cure for my disease—a bone marrow transplant—I would nonetheless die because I’d never find a matching donor, and the reason was because I was Jewish.
Root of concern
At first I feared prejudice. “Why, I asked, would my ethnicity impact my opportunity to benefit from the treatment that could save my life?” The reason was simple: Tissue type is inherited, like eye or hair color. A patient’s best chance of finding a genetic match lies with those of similar ethnicity.
All the technology in the world couldn’t help me overcome that fact. What could, and did, help was the kindness and generosity of total strangers. In fact seventy percent of patients rely on unrelated donors because of the absence of a matching relative.
So the solution seemed clear: recruit new donors of diverse ethnic backgrounds into the registry. Eventually I found the one person who was my match and I had a successful transplant.
"...emerging treatments are providing alternatives to finding 'the perfect match.'"
That was 20 years ago. Since then, the worldwide donor registries have grown to 25 million, and while they have come a long way, patients who can benefit from bone marrow transplants are still not guaranteed a match. Part of the reason is continued under-representation of ethnic minorities in the worldwide registry. Part of the fact is that a growing number of patients needing transplants are of mixed heritage. Yet another challenge has been the fear people have of donating bone marrow, a misconception that I hope to address in this article.
Despite the obstacles, new donation techniques are making it easier for donors to save a life, and emerging treatments are providing alternatives to finding “the perfect match.” The ability to join the registry with a cheek swab instead of a blood sample, and to donate stem cells from the peripheral blood instead of the marrow has encouraged many more people to join the registry. Because of certain clinical benefits of this cell source, it now represents some 80 percent of donations.
The use of umbilical cord blood is also an alternative, mostly because those cells are immature and have not yet learned to differentiate self from non-self, making a perfect match unnecessary. Transplants are even being performed with related donors who are half-matches, or haploidentical, with their recipients. Some centers combine the use of cord blood with cells from adult donors, while others are using mismatched unrelated donors thanks to an increased understanding of histocompatibility and which mismatches are more permissive than others.
None of these treatments are without their disadvantages, but the fact that alternatives exist for patients without a “perfect match” brings us closer to the day when every patient can receive a second chance at life. Naturally the best way to find more and better matches is for people to get onto the registry, so if you are between age 18 and 45 and in good health, please swab your cheek today!