The reality of modern day bone-marrow donation is far from the myths of painful needles and arduous extraction, but these perceptions of marrow donation have very real and often fatal effects on patients living with blood cancers.
As the community engagement representative for the bone marrow program at Bloodworks Northwest, Tanya Nobles has firsthand experience with the effects of rumors and misinformation.
“We can point to a lot of different topics in which there are urban myths and crazy ideas that go around and most of the time it’s good for a laugh and a roll of the eyes and there’s really not too much more harm that comes out of it,” Nobles said. “But in this case, people’s ignorance and misperceptions are truly resulting in people dying.”
She educates the public about the realities of bone-marrow donation and dispels the myths surrounding this rather simple and often life-saving procedure. Finding viable donors—especially for mixed-ancestry patients—is another challenge.
Because tissue types are inherited, doctors need to look for people who share a similar genetic makeup in order to ensure higher odds of a successful transplant. This means, for example, that Asian donors are much more likely to be a match for Asian patients.
Finding a match becomes even more difficult when patients of mixed ethnicities are searching for viable donors. This is the exact problem faced by leukemia patient, Lara Casalotti.
Casalotti, a 24-year-old student living in the U.K., has recently gained significant attention around the world in her effort to find a viable donor. The Match4Lara campaign has recently gone viral and registration drives are being organized around the world through the National Marrow Donor Program’s “Be the Match” donor registry. Even if Casalotti is unable to find a match for herself, registered donors will remain in the registration and may save another life in the future.
Her predicament lies in her Chinese, Thai, and Italian heritage. According to the National Marrow Donor Program, only about 7 percent of registered donors are of Asian descent and 4 percent are mixed-ethnicity. This lack of donors from the Asian, Pacific Islander, and multi-racial communities, as well as misinformation about the donation process might keep patients from finding their match.
Heidi Mathisen is a Seattle resident and family friend of Casalotti’s aunt, Sujitpan Lamsam. When Mathisen learned of Casalotti’s search to find a donor, she volunteered to organize an upcoming registration drive at the University of Washington on February 22 and 23. “When people come to a location and participate in a drive directly it’s a much quicker process,” Mathisen said. “The more people that are registered, the easier it will be for someone else.”
According to Nobles, only about 25 percent of all marrow donors require the surgical procedure to harvest stem cells. The other 75 percent have an experience very similar to donating blood: patients are given hormone injections that stimulate the production and mobilization of stem cells within the bloodstream. They are then hooked up to an apheresis machine, which filters out the stem cells and returns the blood back to the patient.
Since the blood is re-entering the patient’s body after filtration, the light-headedness and fatigue commonly associated with blood donation is mostly absent. For the most part, the only side-effects donors can expect are mild aches and pains from the hormone injections before donating.
Of the millions of registered donors worldwide, only about 1 in 540 will actually end up donating to a patient. Nobles sees marrow donation as a privilege that very few people will get to experience in their lifetime, one which can give someone a fighting chance at life.
Of the few donors who are found to be a positive match for a patient, about half of them back out of their commitment prior to donating. For patients, families and doctors, this is devastating.
“If you don’t honor your commitment, which happens all too frequently, you may have just ensured that somebody will die and that you had the power to give them a chance and simply chose not to do so.”
People who register as bone-marrow donors must be prepared to follow through with their commitment to help a sick patient, even if that patient is a complete stranger.
Potential donors can contact Bloodworks Northwest (formerly Puget Sound Blood Center), which is organizing a registration drive in collaboration with Match4lara at the University of Washington’s Red Square on February 22 and 23 between 10:00 a.m. and 3:00 p.m. Registration is as simple as filling out some paperwork and having a cheek swab. For more information on registering as a bone marrow donor or upcoming registration drives, visit bethematch.org.
