Seattle Children’s patients are often the most critically ill kids in the region, and some of them require life-saving transplants, such as an organ or bone marrow transplant. This is a daunting procedure for any family, but it can be even more so if that child is of mixed-race.
Multi-ethnic and multi-racial children have extremely diverse genetic makeup, so the odds of finding a donor who matches that genetic makeup lowers dramatically. With the growing community of racially and ethnically diverse people, it’s important that more people become donors so that the chance of a mixed-race child finding a match increases. At this time, the number of mixed-race donors falls far below those in need of a bone marrow transplant.
In fact, only 3 percent of the 16.5 million potential bone marrow donors in the National Marrow Donor Program’s Be The Match Registry identify themselves as mixed-race.¹ And unfortunately, this is a big problem that very few people know about. However, with the help of Japanese-Canadian documentary producer, Jeff Chiba Stearns, this could begin shifting in the very near future.
Jeff is raising awareness of this subset of patients in need of donors through his compelling documentary, Mixed Match, which highlights the lives of young mixed-race patients who are awaiting a match in order to undergo a life-saving procedure that is their only medical option.
Maga Barzallo Sockemtickem, a part Native American, Caucasian and Ecuadorean
15-year-old, is one of the patients profiled in Jeff’s documentary. Maga spent seven months at Seattle Children’s Hospital in 2011 waiting and hoping for a donor match to be found.
“Waiting for a donor is a terribly trying and draining period of time for both the patient and the patient’s family,” said Dr. Douglas Hawkins who leads the Cancer and Blood Disorders Center at Seattle Children’s Hospital. “Identifying a match is something entirely out of a family’s control, and all they can do is hope for the best.”
Finally, after months of anticipation, a donor was identified as a match for Maga and she was able to undergo the bone marrow transplant necessary to save her life. In the documentary, she tells Jeff, “My genes are very unique, and to find someone that matched nine out of 10 of them … it just fascinates me.”
In order for more success stories like this to unfold, a more diverse donor registry needs to be created. This will allow for more matches and subsequently more lives saved.
Statistics
- Every year, over 30,000 people in the U.S. are diagnosed with life threatening blood diseases like leukemia. For many patients, a bone marrow transplant is their only chance at survival. Only 30% of patients find matching donors within their families. The remaining 70% must search for an unrelated donor.²
- The number of people who identify themselves as multiracial in the U.S. has grown from 3.9 million in 2000, the first year the census included the category, to 5.2 million in 2008.
- About 6,000 people in the U.S. are awaiting a bone marrow match.¹
- According to the World Donor Marrow Association, while two out of three Caucasians find a match, the chances of a patient from another ethnic background can be as low as one in four.³
- Despite rapid improvements in marrow registries around the world, the global registry is still disproportionately represented by the U.S., U.K. and Germany — all predominantly Caucasian countries.³
- According to the 2000 U.S. Census, 41% of the mixed-race population is under 18, meaning much of the mixed-race population is too young to donate marrow, which requires donors to be at least 18.³
Sources
- National Marrow Donor Program
- Mixed Marrow
- World Marrow Donor Association
- Seattle Children’s Pediatric Blood and Marrow Transplant Program
Looking forward to this documentary; it drives home the importance of Be The Match Registry's mission.
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