For minorities, search for bone marrow donors is a personal struggle

“I am Hawaiian, Russian Jew, Italian, Portuguese, Native American, and I’m pretty sure, English. I am a mutt.” That’s how Lani Riccobuono, one of the newly registered donors on the National Bone Marrow Program’s Be The Match Registry described herself as she signed up to be a donor two weeks ago.

Riccobuono, who is multi-ethnic, is a needle in the haystack donor for leukemia patients seeking a match for some of the least represented racial groups on the national registry.  “I am from multiple ethnicities and I hope that it will make me a good candidate for a match for someone that is an ethnicity with a low donor rate,” said the UC Berkeley graduate, who is now an intern at Kaiser Permanente’s Oakland Medical Center.

Be The Match has added 685,000 donors in the last 12 months.

Only three percent of donors on the Be The Match Registry identify themselves as “multiple race,” representing 300,000 potential donors on a registry that the National Marrow Donor Program says has surpassed 10 million donors since it was set up by the family of a leukemia patient in 1986.

Riccobuono had registered to donate in support of 14-year-old Hispanic leukemia patient Cynthia Rodriguez, only to find that she wouldn’t be a match, but she represents the long tail of Be The Match’s graph of donors by ethnicity. American Indians constitute one percent, with at least 100,000 registered donors, while Hawaiians make up just 0.1 percent, about 13,000 donors.

Additionally, of the 10 million potential donors on the Be The Match Registry, only 10 percent are Hispanic or Latino and only seven percent are classified as Asian or South Asian. African Americans constitute only 7 percent of the registry, making it much harder for patients from these groups to get a donor.

“Racial and ethnic heritage are important factors in finding a matching marrow or cord blood donor,” said Be The Match spokesperson Kimberly Nall. “Because the tissue types used to match patients with donors are inherited, patients are most likely to match someone of their own race or ethnicity.”

“Right now, the chance of finding a match on the Be The Match Registry is close to 93 percent for Caucasians, but for Hispanic and Latino patients, the chances can be as low as 72 percent,” Nall said.

For minority leukemia patients in need of bone marrow transplants, finding a matching donor can be a daunting and personal task. Over the past few weeks, two Bay Area families have drawn hundreds of new donors to join the registry in support of both Rodriguez and UCLA alum Janet Liang, both of whom need bone marrow transplants.

Liang, who is Asian and lives in Pleasanton, has attracted 20,122 new donors to the registry through the efforts of support group Team Janet, a group of well wishers mostly made up of her friends from the Bay Area and based in Pleasanton. Liang is still looking for a match after she went into relapse in December 2011.

“We have not found a perfect match for Janet yet,” said Vincent Trinh, a close friend of Janet’s who has played a key role in mobilizing support for her. “We are trying to find a match at the latest by the end of June. The sooner we find a match, the better.” Trinh said Janet was currently undergoing clinical trials at the MD Anderson Cancer Center in Houston, Texas.

Liang was diagnosed with acute lymphoblastic leukemia (ALL) shortly after her graduation from UCLA in August 2009, according to Trinh. She went into remission in June 2010 after treatment, but this would only last for one and a half years.

Today, the Asian American Donor Program (AADP) will host a bone marrow drive in support of Janet  in Sacramento, just one of the several locations in which they have hosted drives since 2011. Team Janet keeps a calendar of all upcoming drives and activities a regularly updated website, HelpingJanet.com.

Ruby Law, a recruitment director at AADP said the organization has hosted 150 bone marrow drives in support of Janet since 2009, attracting 5,000 potential donors.

“Misconceptions are the biggest challenge in recruiting donors,” Law said. “Some people think they will be donating a chunk of their bones. That’s not true. About 25 percent of the time, a donor will be donating their bone marrow through their pelvic bones. They will be under general anesthesia and will not feel anything during the process.”

Liang’s fight against ALL has been a personal battle that started within her family and became a public cause for many of her friends after she started Team Janet. Now, it has spread into a global movement, reaching out to Asians across the United States, China, Taiwan, Hong Kong and Singapore.

Writing on her personal blog after admission to MD Anderson, Liang pledged to give back to the community in return for the support she has received thus far. “I have gotten a lot of questions about how people can help. I feel so guilty, because I get the sense that I’ve been nothing but ‘taking’ from the generosity of not only family and friends, but even strangers I’ve never met,” Liang wrote. “I want my life back and privileges I *think* I deserve like finishing graduate work in the healthcare field (then becoming a teacher when I gather more life experience).”

For 14-year old Rodriguez, who graduated from St. Martin De Porres School in West Oakland a day after the May bone marrow drive held for her at the Oakland Medical Center, the effort to find a match has been a family effort championed by her parents and friends.

“We are grateful to the community for supporting Cynthia, especially the Oakland Bandits, her softball team,” Ericka Rodriguez, Cynthia’s mother who has mobilized members of her church to sign up as donors, said by phone.

Because of the lack of diversity among bone marrow donors, supporters of Rodriguez and Liang have had to host several drives in the hope of finding a match, calling for people of similar racial identity to come up and register. While a match has not yet been found for either woman, the process has attracted thousands of other donors who end up helping other, said Nall.

“Patient families like Cynthia’s often partner with Be The Match to raise awareness about the importance of joining the Be The Match Registry,” Nall said. “We have worked with families across the country and in fact, 35 percent of donors recruited in 2011 were through patient family drives.”

Be The Match Registry started as a drive for one individual, with only 10,000 registered donors back in 1987.  “We truly value and appreciate the efforts of these families, as they are the cornerstone of what has built Be The Match and have helped grow the Be The Match Registry. Efforts of these families and their friends will help many patients into the future,” Nall said.

Nall said hundreds of thousands of people join the Be The Match Registry every year. More than 650,000 people joined the Be The Match Registry in 2011, and on average, more than 54,000 new potential donors join the Be The Match Registry each month.