“The biggest risk in this whole thing has been to find a donor,” says Anurag Mendhekar, a friend and well-wisher who coordinated several bone marrow drives in Northern California in 2001. Viswanath’s current health crises seem rather small, says Mendhekar, when one realizes that Mohan faced a one in 20,000 chance of even finding a match. Each year, thousands of minorities (African Americans, Native Americans, Asians/Pacific Islanders and Hispanics) are diagnosed with life threatening diseases such as cancer. For many of these patients, the only chance to save their lives is a bone marrow or stem cell transplant.
According to the National Marrow Donor Program (NMDP), the total number of donors registered in the National Bone Marrow Registry is 4.5 million, out of which only 287,129 are of Asian/Pacific Islander origin. India has crossed the billion mark in population and, in the U.S. there are over one million Indians. Yet the number of potential volunteer bone marrow donors is pathetic for the South Asian community: there are only about 44,000 South Asians (Indians, Pakistanis, Sri Lankans and Bangladeshis) on the Registry.
A Match is a Miracle
It’s little wonder then why A3M, a Los Angeles marrow donor recruitment organization, calls itself Asians for Miracle Marrow Matches (A3M). Every match is a miracle if you consider this. When someone of South Asian origin needs matching bone marrow, the chance for a match dwindles to just one or none at all. On the contrary, when a Caucasian needs a bone marrow transplant, he has a chance of finding about fifteen matches.
“Getting the best match of the potential matches is a critical factor in the transplant and recovery process for a patient,” says Rafiya Khan, founder of SAMAR (South Asian Marrow Association of Recruiters) in New York. A clinical scientist who managed the lab for HLA at New York’s Memorial Sloane Kettering, Khan is spearheading a Registry building effort in India in the hopes of broadening the base for Indian patients. “Looking at the bone marrow bank as it is today, Indians will not have a choice in the matter,” says Mendhekar.
The Best Match is Key
70 percent of patients who need a bone marrow transplant cannot find a match within their own families and will have to find an unrelated matching donor. A 25 percent chance exists that a patient can find a match in his sibling. “But now with family planning, it’s even more difficult to find a match within the family, so most patients are forced to look for unrelated donors,” says Khan.
Although there have been cases where the patients found matching donors from people outside of their ethnic group, the most likely match is someone from his or her own racial or ethnic group. Every ethnic group has certain genetic markers, typically called human leukocyte antigens (HLAs). For a bone marrow transplant to be considered possible, five out of six HLAs need to match.
Indians: Insular? Uninformed?
The NMDP has facilitated 14,000 bone marrow transplants thus far. Recruitment organizations such as A3M in Los Angeles and SAMAR in New York lumber on patiently to increase the representation of South Asians in the Registry.
“But the number one problem is education—the South Asian community is not aware of the situation or the need,” says Carol Gillespie, Executive Director of the Asian American Donor Program (AADP) of Fremont.
Often it’s not just the donor that needs to be educated, it’s also the donor’s family that needs to understand what’s involved in the bone marrow donation process. “I’ve seen many South Asian patients die because a donor who matched decided not to donate at the last minute just because a family member was afraid,” says Gillespie. Sometimes, cultural bias holds people back. For instance, the Chinese culture traditionally opposes organ donation. Superstitious beliefs continue to stymie the recruitment of more Asians into the Registry.
In the Indian community, however, recruitments specialists like Madhuri Mistry of A3M don’t contend with much cultural bias. But they talk about other hurdles. “It has been a struggle. When the South Asian task force goes to any temple, sits there for six hours and talks to every passerby, it comes back with 35 donors. But our Korean task force goes to churches every weekend and recruits 130 donors out of a congregation of 1,000,”says Mistry. The Korean recruitment is much more successful because the community members are regulars at their churches and the Korean media is actively involved in publicizing the cause.
Members of the Hindu community, on the other hand, don’t congregate regularly at local temples. “Our religion is not a community religion. Unfortunately, there isn’t a priest who can sway an entire community in a consistent way,” says Mala Gupta, Chief of Cytopathology at the Winthrop University Hospital in New York. Gupta feels Indians are insular. “We just put blinders on and go on with life. There isn’t an awareness that you need to do something for the community—that this isn’t about you, your children or your parents. It’s about a larger community.
Diversity in language and culture has always been another obstacle. Each section of the Indian community meets at a different place for various religious, social, or political reasons. “My job has helped me understand how diverse we are and therefore, how divided we are,” says Mistry.
Gillespie’s organization often encounters problems with too many common names, such as the ubiquitous “Singh.” Recruitment organizations need the birth names of donors and they would like potential donors to inform NMDP about their change of address. If people move, it’s devastating for a patient to have found a matching donor and then hear that the donor simply cannot be traced.
New problems, new cures
With the intermingling of races, new issues arise. “I’m really nervous about the future of mixed-race children in the world,” says Gillespie. For products of mixed marriages, the chances of finding bone marrow matches are abysmal because of the rare combination of genetic markers. But for these emerging mixed-race communities, there may be hope in new findings.
Cord blood banks, which harvest stem cells from umbilical cord blood, herald a new era in bone marrow transplant research. Umbilical cord blood is very unique because it has immature cells. These stem cells in cord blood have not even developed into body cells and patients have very little or no chance of contracting GVH disease. With a cord blood transplant, a 4-6 HLA match is considered acceptable. But cord blood works only for patients less than 80 pounds and, typically, its beneficiaries are children. The search for a more reliable method continues.
Until medical technology advances, however, for most South Asian patients who needed a matching marrow donor yesterday, the one chance to live, again, may still depend upon the humanity of others.