Many years ago, I signed up to be a bone marrow donor. The Be The Match registry had a booth at an Asian American and Pacific Islander (AAPI) event because they needed more Asian donors. It was a quick and easy cheek swab. I didn’t give it another thought until my love Lupe was diagnosed with Non-Hodgkin lymphoma.
His first bone marrow transplant was autologous (his own bone marrow), and he went into remission for a year. He relapsed with an aggressive leukemia. He needed a second bone marrow transplant, and it would need to be allogenic (donor bone marrow). I was devastated, but Lupe was hopeful. He believed that it would be easy to find a compatible donor in his large family. Lupe was the oldest of seven children and a father of two, but none of them matched closely enough to safely transplant. We were told the best chance of finding a match would be from the Hispanic community. We were shocked to learn that Hispanics and other communities of color were poorly represented on the donor registry.
We started asking family and friends what they thought about donating bone marrow. Some thought that it would require drilling into their bones or something equally as painful. We found many reasons for a lack of diversity on the registry, including myths, misconceptions, and limited opportunities to sign up. I realized the only reason that I was on the registry was because they brought the opportunity to a cultural celebration. Lupe and I worked with Bonfils (now Vitalant) to increase awareness of the need for minority donors. We shared our story, attached below, which Bonfils used for education and fundraising events. Lupe attended donor drives and fundraisers, all while undergoing treatment including chemo. Lupe pushed through fatigue and other side effects because he believed that it would mean more to people if they met someone that needed a donor. Lupe was able to find a donor and that gave us another year of life together. It can be hard to share his story, but it is worth it if even one person registers to be a donor.
Organ Donation Statistics | organdonor.gov For more information
Donate Marrow or Blood Stem Cells | Be The Match To register or donate