LANSING, Mich. (WLNS) — More than three-quarters of African Americans are unable to find a bone marrow or stem cell transplant who need one, according to the nation’s largest bone marrow registry, Be the Match.
There are more than 20 million people on the registry, a database of people who volunteer to donate their stem cells or bone marrow if they’re found to be a match to someone seeking a transplant, and oftentimes, a transplant can mean giving people a second chance at life.
In fact, a blood stem cell transplant can be a cure for more than 70 diseases including blood cancer (leukemia, lymphoma, etc), sickle cell anemia and aplastic anemia to name a few.
However, the likelihood for people of color and Black people specifically, is staggeringly low.
Every year, millions of people are diagnosed with a life-threatening blood disorder.
That means millions of people are looking for a donor, someone whose special protein cells, called HLA proteins, match their own.
Patients are most likely to match donors who share the same ethnic background, according to Be the Match, but this is not always the case.
There is a catch though — more often than not, there are not enough donors available and willing to give blood.
As the coronavirus pandemic has struck the world and cut blood donations severely, the challenge of finding a blood donor match has become more difficult.
Charles Poldo is a 51-year-old Black man living in mid-Michigan. In 2012, Poldo was diagnosed with acute myeloid leukemia, a type of cancer of the blood and bone marrow with excess immature white blood cells.
Acute myeloid leukemia runs in his family too — but Poldo said he was determined to beat the cancer.
“My mom and her dad died from it so when I got diagnosed, I knew I was not going to die,” Poldo said.
So, Poldo embarked on a 7 year-long search for a donor.
But doctors could not find anyone of the more than 20+ million people on the Be the Match Registry who were exactly compatible with Poldo.
Doctors decided to proceed with an imperfect solution and Poldo received a treatment that did not fully cure his AML.
As a result, Poldo went into remission and was re-diagnosed with AML again in Nov. 2019.
By this time, technology had advanced to where Poldo could receive an imperfect match.
Even so, Poldo’s scenario is not an ideal one, especially because of the adverse effects of an imperfect match — namely, his own immune system attacking and rejecting the donor’s cells.
In the medical field, they refer to this adverse effect as a “post-transplant complication” or graft-versus-host (GVHD) disease.
In Feb. 2020 just before the pandemic hit, Poldo received an umbilical cord transplant, which uses stem cells from umbilical cords donated at the time of a person’s birth for instances like these.
Fortunately, Poldo’s immune system did not reject his transplant’s. But that’s not the case for everyone.
Poldo said the person whose umbilical cord he received is now 8 years old. While he did not have the opportunity to meet his donor face-to-face, he is thankful.
Poldo is one of many African Americans who are unable to find a donor whose proteins match up exactly.
Even though Poldo’s transplant was successful, others are not as lucky.
Why there is a lack of donors
People of color are underrepresented in the registry for a number of reasons, although there is no clear evidence as to why.
According to CBS News, a couple of reasons why people of color are underrepresented include a history of medical abuse of Black people in healthcare research, a lack of multi-lingual resources and stigma or fear of donating out of health concerns.
The Black community is more likely to be skeptical to sign up to be volunteers for medical trials or even the registry due to their abuse and mistreatment by medical researchers in the past.
For example, the 1932 Tuskegee syphilis trials also known as: Tuskegee Study of Untreated Syphilis in the Negro Male purposely infected several hundred Black people with syphilis without their informed consent or cure of the disease.
The trial that was supposed to last six months ended up lasting 40 years.
In addition, language barriers and access to knowledge about donating blood and stem cells exist among minority communities including Asian, Hispanic and Black people.
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Here are some facts that Be the Match has clarified for those on the fence about donating.
FACT: Donating is less painful than you think
Many mistakenly believe that donating blood stem cells is painful, when in reality it’s not.
- While TV shows and movies have wildly exaggerated blood stem cell donation—especially bone marrow donation—as something scary, the reality is much less dramatic.
- Discomfort during recovery varies from person to person. Side effects may include back pain, fatigue, headache or bruising for a few days or weeks.
- The vast majority of donors say it was worth it to help save a life, and they would do it again.
FACT: There are few risks to donating.
It is a common misconception that donating blood stem cells is dangerous. The truth is that there are few risks in donating blood stem cells.
- All donors are carefully prescreened to ensure they are healthy and the procedure is safe for them.
- There are rarely any long-term side effects from donating either PBSC or marrow. The donor’s immune system stays strong, and their blood stem cells replenish themselves in 4 to 6 weeks.
- While no medical procedure is completely risk free, every precaution is taken to ensure the safety and well-being of the donor.
- Because only 1 to 5% or less of your marrow is needed to save the patient’s life, your immune system stays strong.
FACT: Donation is absolutely free to the donor.
Many people think that donating to a patient in need is expensive for them, but Be The Match covers every cost related to donation.
- Be The Match covers travel, meals and hotel for donors and one companion.
- All medical costs for the donation procedure are covered by the patient’s medical insurance or Be The Match.