Last January, Paul Ota felt a pain in his chest. Maybe, he thought, he had pulled a muscle at the gym. Upon visiting his doctor, though, Ota was diagnosed with advanced non-Hodgkin’s lymphoma, a form of cancer that can start in a person’s lymph nodes.
After six rounds of chemotherapy and surgery to destroy the mass, the cancer grew back. Ota’s doctor suggested that he and his family begin a search for bone marrow donors, as a new approach to battling his cancer. Little did Ota know that his multiethnic background would be an obstacle to finding a marrow match. Ota is of Japanese and Mexican descent.
“My sister and I got tested; they told us that we had the best chances (of being bone marrow matches),” said Jonathan Ota, Paul’s younger brother. “Weirdly enough neither of us matched him, but we apparently matched each other perfectly.”
Being unable to find a match, even between blood-related siblings, is a common problem among multiethnic patients who need bone marrow transplants. According to Carol Gillespie, the executive director of the Asian American Donor Program, in order for two people to be a marrow match, they have to have the same human leukocyte antigens. One can think of HLAs as special markers or flags in almost every cell of the human body. As people inherit HLAs from their parents, a potential donor might have a similar racial or ethnic background as the recipient.
This becomes difficult, though, when patients are two or more ethnicities, as multiethnic people tend to have more complex tissue types than many monoethnic people (people with one ethnic background). Many multiethnic people are also multiracial, like Ota. Within racial groups (i.e. Asian, black, Latina, white, indigenous), it is more likely that a person will find a match between ethnicities. For example, it is more likely for two Asian people of different ethnicities (i.e. Chinese and Korean) to match than an Asian person and a black person to match (i.e. Chinese and Nigerian).
This can complicate finding a match even more, as only about seven percent of the U.S. population is multiracial.
“Adding more potential donors to increase the ethnic diversity of the registry, in some cases, will increase the variety of tissue types available, helping more patients find the match they need,” Gillespie said. “Expanding and diversifying the registry is our primary focus.”
According to their Website, AADP is a community-based nonprofit organization specialized in conducting outreach and donor registration drives in and with diverse communities. They hold recruitment drives at colleges, corporations and faith-based organizations, and also have online registration options. The group is an official recruitment center of the Be The Match registry.
AADP also holds community drives for individuals, like Ota and 13-year old Derek. (The minor’s last name is being withheld due to privacy concerns). Derek enjoys playing video games, building Lego models and playing baseball, but last year was diagnosed with acute myeloid leukemia. He spent most of seventh grade going through chemotherapy until he went into remission.
This summer, though, the leukemia returned. AADP helped organize a donor drive for Derek, who is of Japanese and Chinese descent, earlier this month. The fact that Derek has relapsed means that a bone marrow transplant is the only treatment option left in his case. Of the 29.4 million registry members throughout the world, there has been no compatible donor found for him. Gillespie says it is just a matter of getting people to register.
“He is indeed a very unique young man. His match is out there, somewhere, he or she just isn’t registered yet,” said Gillespie.
AADP has already registered 200 people in Derek’s name.
In order to register, a potential donor has to be between the age of 18 and 44 years old, meet general health requirements, do a quick cheek swab to get a sample of their cells for testing, and must be committed to readily donate to any patient in need if they are matched. Even though many people register, over 40 percent of potential donors contacted will withdraw their offer, making finding a match even harder.
Gillespie says there are multiple studies being conducted right now into alternative ways to fight leukemia and other cancers and illnesses that require bone marrow transplants, but until this research reveals a new treatment, bone marrow transplant will be many patients’, like Derek and Ota’s, last resort.
Even with the difficulty of finding a donor, Jonathan Ota is just thankful to know that AADP will continue to help him hold drives for his brother. He does not plan to give up on the search for a match for his brother anytime soon.
“I’ve just been reaching out to whoever I can: friends, family, friends of friends, and I specifically have been asking people to let me know if they find other Japanese Mexican people that are not already on the national registry, to be able to get them to sign up,” said Jonathan. “Even if my brother finds a match, I know that we (the Ota family) will continue being involved.”
For more information about AADP or to register as a donor, visit www.aadp.org or call (510) 568-3700.
To read updates on Ota’s condition, visit https://www.facebook.com/MatchForPaul. For updates on Derek, visit https://www.facebook.com/Rally4Derek.