Equal Opportunity for Those Needing Bone Marrow Transplants

Jay A. Feinberg, CEO, Gift of Life Bone Marrow Foundation, 2004 Charles Bronfman Prize Recipient

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.

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.
That was 20 years ago. Today, 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 is the fact 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.

After starting Gift of Life, I received the 2004 Charles Bronfman Prize, and with the support and help of the Prize, the work we do has been propelled and there have been so many exciting developments. 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.

Marrow and stem cell transplantation has represented a groundbreaking example of the human immune system's power to cure cancer, but it's not without its risks. Today, thanks to growth in the field of immunotherapy, work is being done to greatly improve transplant outcomes by reducing the risks. Recently President Obama unveiled his "Precision Medicine Initiative," intended to leverage advances in genomics. Each patient's cancer is different, and a "precision-medicine" approach will allow researchers and clinicians to better understand the genetics of cancer on an individual level. The ability to predict the likelihood of success of different therapeutic options; to understand the molecular basis of complications such as "graft versus host disease;" to perform better donor-recipient matching through next generation DNA sequencing -- all will contribute to better outcomes for the patients we serve.

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 18-45 and in good health, please swab your cheek today!

Jay Feinberg is a 20 - year survivor of a bone marrow transplant and is the founder and CEO of the Gift of Life Bone Marrow Foundation, a public registry helping children and adults battling blood cancer find their matches. Jay is the 2004 recipient of The Charles Bronfman Prize.