OAKLAND, Calif. – South Asians diagnosed with blood cancers like leukemia, lymphoma, sickle cell anemia or other life-threatening diseases are in a critical, head-on fight for life. Why? A person who is a marrow match must be located before a marrow/stem cell transplant takes place. Often, this transplant is the only way to save or prolong a patient’s life.
The odds of finding a fully matched donor depend on the patient’s ethnic heritage. For a transplant to succeed, donors and recipients should have a matching set of genes called Human Leukocyte Antigens. About one-third of patients can find an identical set of HLAs among their siblings, while two-thirds have to depend on unrelated donors.
There are 816,000 people of Asian ancestry registered on the Be The Match® national registry. That is 6 percent of the 13.5 million total number of registered individuals. Some 242,000 Asian Indians are part of the national registry – which is 3% of the total number of Asians registered. In comparison, there are 7.8 million Caucasians on the Be the Match® registry, which is 57 percent. Other diverse tissue types that are also under-represented on Be the Match® are found in the following communities: African Americans at 6 percent, American Indian & Alaska Natives at 1 percent, Hispanics/Latinos at 9 percent, multiracial at 4 percent and Native Hawaiian/Other Pacific Islander at .1 percent.
Three hundred sixty-five days a year the Asian American Donor Program, a nonprofit organization in Alameda, Calif., hosts marrow drives to increase the number of multi-ethnic individuals on the national marrow registry. At this time, they are searching for a marrow match for three South Asians – Vishal, a 31-year-old software engineer diagnosed with Acute Myeloid Leukemia; Vidya, a 35-year-old software engineer diagnosed with T-Cell Acute Lymphoblastic Lymphoma; and Kauser, a 24-year-old woman diagnosed with Paroxysmal nocturnal hemoglobinuria.
“Finding a marrow/stem cell match can be like finding a needle in a haystack,” says Carol Gillespie, the AADP executive director. “Multiracial patients face the worst odds. Those diagnosed with a blood disease need a marrow/stem cell transplant as soon as possible. Increasing the ethnic diversity of the registry helps more patients find a match. You could potentially match anyone in the world. This is truly a global effort.”
Marrow/stem cell matches are very different than blood type matches. Just as we inherit our eyes, hair and skin color, we inherit our marrow and stem cell tissue type.
Dinesh, who lives in San Jose, is 40 years old and a product manager working at a major software company in the Bay Area, donated his stem cells and helped save a life. He now eagerly spreads the work about the need for Indians and Pakistanis to join the marrow registry.
About 5 years ago, Dinesh and his wife registered as potential donors at an AADP booth at the Shiva Vishnu Temple, a Hindu temple. In 2014, he was notified by both email and snail mail that he was a potential match for someone.
“I donated my stem cells to save an unknown recipient in dire need of those cells,” Dinesh says. Before donating, Dinesh went through some medical diagnostic tests.
“Unfortunately, as destiny would have it, my own vitals were not doing well for the procedure and they felt as concerned about my health as much as they did about the recipient,” Dinesh says.
Then, Dinesh started working with his doctor on his health. In early 2015, he was called by Be the Match® and they asked if his health was better. When he replied “yes,” they asked if he was still willing to do the donation. He was surprised to find out that it was the same patient, that they could not find any other donor, and that he was the only one!
Dinesh says, “I couldn’t contain my excitement, but at the same time, I was worried that the tests (his medical tests) may fail this time too. But, my prayers were heard this time. Everything went through fine and I went ahead with the process.”
What’s the Solution?:
Encouraging more people of different ethnicities and those who are multiracial, to become committed registrants, potentially saving a life. Each of us can “Be The One to Save a Life!” The Asian American Donor Program (AADP, www.aadp.org) is a 26-year-old nonprofit 501 (c) 3 organization, based in Alameda, Calif., that works to educate community members about the shortage of diverse tissue types and the importance of joining the Be The Match® national registry. It is the oldest nonprofit of its kind in the country. AADP is an official recruitment center of the Be The Match®.
“There is a shortage of committed donors on the Be The Match® national registry,” says Carol Gillespie, the AADP executive director. “We need everyone of ethnic ancestry — to step forward and join the Registry. When a marrow match is not readily available, patients have to wait longer than is ideal to find a match.
Once a match has been found, their disease may have progressed to the point that they are no longer eligible for a transplant.
Shortage of Ethnic/Multi-Ethnic Donors: The Be The Match® registry recruits hundreds of thousands of donors each year through an extensive network of more than 155 local and regional Community Engagement Representatives and organizations. You only need to join the Be The Match® registry once. However, it is very important to keep your information up to date.
In 2015, an estimated 162,000 people in the U.S. were diagnosed with a serious blood disease. “For thousands of severely ill blood cancer patients, there is a cure,” Gillespie says. “You could be the cure. Those whose marrow/stem cells are not a match for a patient currently in need now may be a match for someone else down the road, anywhere in the world. I encourage everyone, who is 18 to 44 years old, to commit to registering. Registering is simple – just a swab of the inside of your cheek.”
How You Can Commit to Help:
• Find a registration drive in your area. Go to http://www.aadp.org/drive/
• Register online here: http://join.bethematch.org/aadp
• Contact friends and family and encourage them to go to a registration drive
or register online
• Set up a drive in your area or for more information, call AADP at 1-800-593-6667 or visit our website http://www.aadp.org
• Volunteer to help at registration drives or in the AADP office (email@example.com).