Jay Feinberg
Bone Marrow Transplant Recipient, Founder and CEO of Gift of Life Marrow Registry
People of color are underrepresented in organ donor registries, which means people are dying needlessly.
We have watched as COVID-19 has spread across the United States, leaving more than 220,000 dead in its wake, and many more with persistent health issues. We have also been reminded of the inequities that permeate healthcare, resulting in unequal outcomes for people of color.
When I was diagnosed with leukemia in 1991, I had no idea that my chances of survival were inextricably tied to my ethnic background. When I sat down with the doctor at a large hospital in New York, I learned I would never find a matching donor for my bone marrow transplant because of my Jewish genetic heritage. I had no idea that the best chance of finding a donor was with people who shared the same ethnicity and race. Nor did I know that the donor registry was not ethnically and racially diverse, which likened the search to looking for a needle in a haystack.
With a lot of hard work and a high-profile grassroots campaign, I did find my match. Now it is my life’s mission to pay it forward.
A harsh reality
While I was able to find a lifesaving donor, and 98 percent of those who are Caucasian and in need of a stem cell or marrow transplant can more easily get one, only 25 percent of African Americans find a match. The vast underrepresentation of this population and others in the national and worldwide registries means many patients die needlessly.
I believe that every patient deserves an equal opportunity to benefit from treatment that can save their life. The donor registry must represent people of all backgrounds. In direct response to this issue, we have created a series of initiatives to address healthcare disparities and delve into the barriers and solutions to helping all people access better healthcare.
Raising awareness
First, to raise awareness within the African American community about the grim chances for people of color looking to find a lifesaving match, Gift of Life has launched a new short film in collaboration with rapper and lyricist Terrell Myles. This film brings a message of hope and a resounding call to action that reminds us how one selfless act can positively change the outcome for a person’s life, their family, and an entire community.
To respond to the broader issues surrounding healthcare disparities, we are working in partnership with the NAACP and its Youth and College Division to host a series of virtual town halls. These town halls will equip and empower student-led communities to advocate for social change. Featuring an esteemed panel of speakers — from the descendants of Henrietta Lacks to Karen Weaver, the former Mayor of Flint, Mich. — the events will delve into the various barriers that permeate our systems of care, including mistrust of the healthcare system, lack of patient education, inadequate opportunities for economic, physical and emotional health, and much more.
This is a simple action you can take today: order a swab kit by visiting http://www.giftoflife.org/TerrellTerrell. By swabbing the inside of your cheek, you can enter the registry and be tested to learn if you are a match for a patient, now or in the future.
We can save lives, we can cure blood cancer and sickle cell, but we cannot do it without you. Please join the registry, spread the word, and help us give people of all races and ethnicities the gift of life.