Each year approximately 30,000 Americans are diagnosed with potentially fatal blood diseases like leukemia, lymphoma and sickle cell anemia. Many of these diseases manifest in childhood, adding an extra dimension of tragedy to the misery they cause.
Bone marrow transplants, along with umbilical cord blood transplants, will offer as many as half of those who are fighting these diseases their best chance for recovery.
The genetic standards for these procedures are much stricter than for organ transplants or blood transfusions, leaving Biracial and Multiracial people who’ve been stricken with a blood disease that requires bone marrow regeneration in a huge predicament.
Similar racial identity, not close family relationship, is the best predictor for a bone marrow/cord blood donor match. This puts those with racially complex genetic profiles in an unfortunate bind, since their relative uniqueness reduces the number of genetically compatible peers. Parents aren’t going to match because they only share half of the same racial background, and siblings aren’t necessarily a likely source for bone marrow either, since only 30 percent of those needing bone marrow or cord blood transplants will find donor matches in their immediate families.
Thankfully millions of people in the United States and around the world have already signed up for bone marrow donor registries. The registration process is easy and a swab of cheek cells is the only biological sample required. Donations of umbilical cord blood have been increasing rapidly as well, as hospitals in 24 of the 50 U.S. states now offer this option to expectant mothers.
This all sounds wonderful and optimistic, right? Hang on…
As it turns out, only about four percent of bone marrow and cord blood donors come from Multiracial backgrounds. As you can imagine, the diversity within this group is astounding. It’s one of those times when being Biracial or Multiracial presents families, doctors and researchers with severe challenges and even handicaps, as the odds of finding a match are so slim. To give you a more accurate picture, this is why race and ethnicity matter when being Biracial, Multiracial or non-White and needing bone marrow.
Meet Sophia Trujillo
The plight of Sophia Trujillo, a six year old from the Chicago area, illustrates the problem in a most agonizing way. Sophia suffers from a rare blood disease called aplastic anemia, which among other things is slowly destroying the ability of her bone marrow to produce white blood cells. Without adequate supplies of white blood cells Sophia is extremely vulnerable to infection and disease, to the point where her chances of survival have been severely impaired. Sophia is no longer able to attend school and is now living in virtual quarantine, undergoing frequent—and painful—medical tests while she and her family wait for a donor to be found.
Sophia is half Filipina and also part Irish, Spanish and Italian, and so far no match for a bone marrow donation has been found—not in national registries and not among the many volunteers who’ve come forward to be tested for compatibility. Fortunately her story is receiving an enormous amount of publicity both in the Chicago area and around the world, which is a blessing because it has helped boost donation registration while spurring more aggressive outreach efforts to Biracial and Multiracial communities.
Sophia’s mom, Michelle, has become deeply involved in these efforts. Collaborating with officials from Be The Match, the official coordinating agency of the National Marrow Donor Program, Michelle has organized a series of bone marrow registry donor drives, most recently at the Filipino-American celebration Adobefest, which was held in the village of Morton Grove, Illinois on September 19.
Be The Match officials have made it their mission to spread the word about the challenges that Biracial and Multiracial people like Sophia face. They have been soliciting the support and cooperation of non-White and Multiracial community leaders, clergymen and women who serve racially diverse congregations, medical professionals and family members of the stricken, all of whom are in a good position to help publicize a problem that few realize even exists.
So far these efforts are meeting with some success. But it will take a long time and a lot of hard work before the repository of materials collected from Biracial and Multiracial donors is expansive enough to offer boosted odds of success for those who need bone marrow or cord blood donations. And the racial diversity of the U.S. population is growing, which means registries will need to expand at an accelerated rate to stay ahead of our evolving demographic curve.
Cord Blood Donation: Getting to Know the Lesser-Known Alternative
Most outreach efforts have been focused on finding more bone marrow donors, and that makes sense since people can register and donate samples in a wide age range (18 to 44 is preferred, although older volunteers are accepted). But the umbilical cord blood option could ultimately offer even more promise for Biracial and Multiracial individuals, and is therefore deserving of more attention than it has previously received.
In an ideal world those living with blood diseases would have healthy samples of their own umbilical cord blood available for therapeutic procedures—which cord blood donation makes possible. Moms who choose this option will have a way to put healthy blood samples in storage for later use, should a problem arise down the road. Private (and expensive) storage facilities for cord blood samples exist, but more than 100 hospitals in two dozen states have now set up public “banks” for cord blood and this number is increasing. Although it can’t increase fast enough, obviously.
As long as the procedure is arranged for ahead of time there is no difficulty or inconvenience involved with the cord blood donation process. This blood is not reserved for the family that donates it (although it should be available if needed), so Biracial or Multiracial moms or moms of Biracial and/or Multiracial kids who volunteer to provide it may be able to help others in desperate need even if their own children stay healthy.
A Call to Action that Must Be Heard
The need for Biracial and Multiracial donors is most acute, but there is a shortage of donors from the African American, Hispanic/Latino and Asian-American communities as well. People have the mistaken belief that donating bone marrow is highly painful, but in fact it is a relatively uncomplicated procedure and is no more harrowing or difficult than donating blood.
Prospective donors of either bone marrow or umbilical cord blood can find all the information they need on the Be The Match website. Meanwhile, anyone interested in being tested for compatibility with Sophia specifically should contact the Advocate Children’s Hospital in Park Ridge, Illinois for further details. All help will be welcome and appreciated.
As Biracial and Multiracial people, one of our struggles is in feeling we don’t belong anywhere. We look for situations where we can be instantly greeted and accepted. As a bone marrow and/or umbilical cord blood donor, this is your opportunity to belong to a group that can make a very real difference to people’s lives.
This is obviously a very personal issue for those of us in the Biracial and Multiracial community—small and growing as it is. As a mother with three Biracial sons, and a Biracial person, Bryony and I are committed to doing what we can to both spread the word about the need for donated bone marrow and umbilical cord blood to help those who desperately need it.
From the moment we began writing Being Biracial: Where Our Secret Worlds Collide, it had always been our intention to partner with a racially appropriate non-profit agency to donate a portion of the proceeds of our book sales. Bryony and I are pleased to announce that we are co-sponsors of two bone marrow drives, both taking place in November.
November 14, from 3:00 to 5:00 p.m. November 21, from 2:00 to 4:00 p.m.
Watchung Booksellers La Casa Azul Bookstore
54 Fairfield St 143 E. 103rd Street
Montclair, NJ 07043 New York, New York 10029
We proudly join:
Be the Match has a registry of nearly 12.5 million volunteers ready to be life-saving bone marrow donors. Because there are patients who can’t find a match, Be the Match encourages more people to join the registry and to be there when they are called as a match.
Project RACE advocates for multiracial children, multiracial adults, and their families primarily through education and community awareness. It supports policies that make a positive impact on people of multiracial heritage at local, state, and national levels. Project RACE is active in the effort to find bone marrow donors for multiracial people and sponsors countless donor registry drives throughout the United States.
La Casa Azul Bookstore is an independent community bookstore located in East Harlem that seeks to raise community awareness and political consciousness on issues affecting East Harlem residents.
Lee & Low Books is the largest multicultural children’s book publisher in the country. It is also one of the few minority-owned publishing companies in the United States.