*According to ABC’s “Good Morning America,” the response to Robin Robert’s announcement that she was suffering from myelodysplastic syndrome, or MDS, a rare syndrome also known as preleukemia, and needed a bone marrow transplant, has been tremendous. “Good Morning America” broadcast that registration with the National Marrow Donor Program had gone up 1000 percent in the two days following the Robert’s announcement.
“In a typical day the registry receives 200 to 300 registrations. In the 48 hours following the Robin Robert’s announcement 3,500 people joined,” said Kirsten Lesak-Greenberg of the National Marrow Donor Program’s (NMDP) Be The Match Registry.
I signed up with the National Marrow Donor Program four years ago. I was in the Baldwin Hills Shopping Mall in Los Angeles and there was a health fair going on. A nice, young African-American man approached me and asked if I would sign up. It’s a very easy, simple process. It was just a swab of the inside of the cheek with a q-tip. There was no cost and I was finished in about five minutes. If memory serves me right, this occurred about a month or so after I had watched the local news and learned about the plight of a beautiful young black girl who desperately needed a bone marrow transplant. I also remembered that back in 1996 former California Angels (now Los Angeles Angels) star Rod Carew’s daughter needed a bone marrow transplant. Unfortunately she was unlucky and a match was never found. She died at the ripe young age of 18.
There are a total of 10 million donors registered with the National Marrow Donor Program’s (NMDP) Be The Match Registry. Of that 10 million, there are only, only 685,000 African Americans, about 7 percent compared to 6.8 million white donors or 71 percent. This means that African Americans receive transplants from the National Marrow Registry at a rate of about 3 to 4 percent of the time compared to a rate of 85 to 88 percent for Caucasians. The numbers for Native Hawaiian and Native American/Alaskans are even more dismal.
Since Robert’s is African American, I contacted the National Bone Marrow Program to find out how many African Americans had signed up since her announcement. Lesak-Greenberg informed me that out of the 3500 only 386, or about 11 percent, African Americans signed up within the four days following the Robert’s announcement..
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Bone marrow is a substance that manufactures blood components. Just like with blood transfusions, the donor marrow must be the same type as the recipient’s, however marrow typing is much more complicated. Only about 30 percent of the people who need marrow transplants receive donations from a relative, usually a brother or sister. That means the remaining 70 percent recipients must rely on finding an unrelated person with similar marrow. The likelihood of finding a match is much higher within a person’s own ethnic group, the NMDP Be The Match Registry says.
“African Americans have a greater overall genetic diversity also known as genetic admixture than other populations. According to population researchers at Penn State University the average African American is 17-18% white. This conclusion came from a study using DNA samples from groups of African Americans throughout the US, West Africa, and Europe. Although not as large, most Black Americans are said to have Native American ancestry as well. This admixture from three continents makes it more difficult to match donors and patients. This is because it will take more possible donors than the norm to find the same number of matches as other population groups. For example ten African American patients will have a lower success rate finding matches in a pool of African American donors than ten Nigerian patients would if were to search a Nigerian pool of donors of the same size,” reports BlackBoneMarrow.com.
In other words, more people of African descent are urgently needed on the marrow registry so that more lives can be saved, the NMDP writes on its website.
A bone marrow transplant is considered the only real “cure” for some 60 different illnesses including forms of leukemia, sickle cell, lymphoma, and aplastic anemia.
July is National African American Bone Marrow Awareness Month. I urge every African American to step up and sign up. Join me, Shaquille O’Neal and T-Boz and become a bone marrow donor. Don’t wait until tragedy strikes and you or a family member finds themselves in a similar situation. Anyone can join the registry online at BeTheMatch.org or in person at any community organization sponsoring a bone marrow drive. All you have to do is be between the ages of 18-60, be in good health and be willing to donate to anyone in need.
“We need people to donate when they are needed,” Lesak-Greenberg said.
If you’re worried about the cost of tissue testing, don’t. All or part of a volunteer’s tissue typing cost may be covered by a patient’s family, community group, corporation, or a group sponsoring a donor recruitment drive. Furthermore, any money paid to cover costs is tax-deductible. Additionally, some states have required private insurance companies to cover donor screening tests. All medical costs for the donation procedure are covered by the National Marrow Donor Program (NMDP), which operates the Be The Match Registry, or by the patient’s medical insurance, as are travel expenses and other non-medical costs. The only costs to the donor might be time taken off from work.
According to the NMDP, Adults may be asked to donate in one of two ways:
- About 76 percent of the time, a patient’s doctor requests a PBSC donation, a non-surgical, outpatient procedure similar to donating platelets or plasma.
- About 24 percent of the time, a patient’s doctor requests marrow, a surgical, outpatient procedure that takes place at a hospital. General or regional anesthesia is always used.
Robin Roberts is luckier than most African Americans in this situation. She has a sister who is a match. But there are many African Americans out there in need of a bone marrow match and they are in need of it now. Just visit BlackBoneMarrow.com
Think about becoming a bone marrow donor this way. When you get to the pearly gates and St. Peter asks “what did YOU do during your time on earth?” You can stick your chest out, paste on a big wide grin and proudly proclaim, “I gave the gift of life.”
Ms. Chico Norwood is a freelance writer and the former managing and sports editor for the Hub City News in Los Angeles, California. She is a former staff writer and assistant sports editor of the Los Angeles Sentinel, the Los Angeles Watts Times and Rapid Publishing, publishers of the Lynwood Journal, Compton Bulletin and the Californian. An award-winning journalist she is the recipient of a National Newspaper Publishers Association (NNPA) Best News Story Award, NNPA Best Sports Story Award, an American Media Health Fellowship, Outstanding Young Woman of America and several other awards of merit. Her articles have been published in the Los Angeles Times, Ebony Magazine and other local and national publications. Contact her via: [email protected].