Every day, African-Americans are dying for a reason you will never read about on the front page of The New York Times or see a segment about on CNN. We are succumbing to a host of cancers and illnesses that affect our blood, for which we bear much of the responsibility. While many of these afflictions can be cured by a bone marrow or peripheral blood stem cell transplant, the sad fact is that African-Americans are largely not registering as potential donors.
With that said, what if I told you that addressing this challenge is as easy as having the inside of your cheeks swabbed?
Every three minutes in the United States, a person is diagnosed with a blood cancer—diseases that include leukemia, lymphoma or multiple myeloma— that affects blood cell production or function and damages the immune and circulatory systems. In 2015, almost 162,020 people in the United States were expected to be diagnosed with a blood cancer, not including the people who were expected to be diagnosed with other blood and marrow disorders, such as sickle cell anemia or myelodysplatic syndrome (MDS), which is my own diagnosis.
For many people suffering from blood-related illnesses, a bone marrow or peripheral blood stem-cell transplant represents the best chance for survival. According to Delete Blood Cancer | DKMS, 30 percent of patients are able to find a matching donor within their families, while 70 percent of patients must rely on donations from strangers. These life-saving matches are made through donor registries. Anyone can register as a potential donor just by getting his or her cheek swabbed, a process that takes less than 60 seconds. Sounds rather easy, doesn’t it? I get it; there is a cognitive dissonance here that is understandable. It’s natural to assume that saving a life is difficult, and the notion that it could begin with such a simple act conflicts with that assumption. Nonetheless, it is true and it is critical that people understand just how simple it is.
Saving a life threatened by a blood-related illness is a numbers game. For instance, think about the lottery. In Powerball, there are 292 million possible number combinations. If you buy one lottery ticket, your odds of winning the jackpot are close to zero. If you buy a million lottery tickets, representing a million different combinations of numbers, your odds of winning, though still slim, increase significantly. The fact is that finding a perfect match for a person in need of a life-saving donation is extremely rare because genetically each of us is unique.
On average, there are more than 3 million differences between your DNA and the DNA of the next person. Much like playing the lottery, the odds of finding a donor match increases exponentially as more people register, which is why increasing the number of donors is crucial.
In the United States, this is particularly significant for African-Americans and other minority populations. A match is most likely to come from a donor who shares the recipient’s ethnic background. Unfortunately, African-Americans are severely underrepresented on donor registries, making up just 7 percent of all people who are registered, greatly reducing their odds of finding matches. This is particularly significant when a bone marrow transplant is the only known cure for diseases like sickle cell, a blood disorder that affects one in 500 African-Americans in the United States. When minority patients are diagnosed with serious and often life-threatening blood diseases and disorders, they are often surprised to learn their odds of receiving a transplant are extremely low because of the underrepresentation of minority donors in the donor registry. Speaking from experience, I can tell you it is a sobering realization.
It is imperative that the African-American community recognizes the scope and implications of this disparity and move toward an aggressive, proactive effort to close the gap by registering more donors, beginning with educating young people on this issue while they are in high school.
There are countless diseases, disorders and conditions that we all hope will one day be eradicated. Despite our initial concern, people tend to only act once they are personally affected. Saving a life is simple. My challenge to you is to take 60 seconds today to do something easy, something remarkable and something that could end up being extraordinarily heroic.
For more information or to receive a free swab kit, visit DeleteBloodCancer.org.
Carl Fox is North Carolina Superior Court judge and the state’s first Black district attorney. He was diagnosed with myelodysplastic syndrome in 2015 and given three months to live, but a successful transplant saved his life. He now advocates for bone marrow donations among African-Americans.