Health and Wellness

A Different Kind of Matchmaker

The need for South Asians to register their bone marrow

By Angilee Shah

Sagarika Savur, 22, was getting ready to graduate from the University of California, Irvine last spring. She was gearing up to move to New York and try to make it as a journalist.

But a sudden attack of headaches and breathing problems completely altered her plans. In a matter of hours, she found out that she has Acute Myelogenous Leukemia, or AML, a cancer that affects the blood and bone marrow.

So now, instead of rushing onto the New York subway every morning to get to a newsroom, she stays within the walls of the City of Hope National Medical Center in Southern California to be monitored and medicated. She was admitted to the hospital on August 15th. for a second round of chemotherapy—but she is still not in remission. A bone marrow transplant is the only treatment option left. So Sagarika waits in the hospital, where she will most likely remain until a donor with her tissue type can be found.

"Now chemotherapy is not an option," says her father, Anand Savur. "Her only hope is a bone marrow transplant."

"Time is critical now," says Sagarika’s father. Indeed, AML produces leukemia cells quite rapidly. Without any treatment, the disease can be fatal in a few months.

Sagarika's battle is a difficult one--not just because of the pain caused by leukemia or because of the side effects of chemotherapy. It is especially difficult because Sagarika is South Asian.

A patient has to find a donor whose tissue type matches his or her own. The highest chance of matching comes with someone within the family, and then within the same ethnic background--the common genes allow for similar tissue types. Because there are thousands of tissue types out there and less than 65,000 South Asians registered as potential donors, a South Asian patient’s chances of finding a match is much less than the chances of a Caucasian patient. Less than 1% of registered donors in America are South Asian, and the United States has the only national, centralized registry with a significant

number of South Asians on the list. (South Asian countries, like India and Pakistan, do not have centralized registries.) Thus, Sagarika and thrity-five others like her are hoping that more South Asians will join the national registry to increase their chances of finding a match.

The National Marrow Donor Program (NMDP) organizes and maintains the registry; there are about 5.4 million people in their database--only 64,000 are of South Asian descent. Groups like the South Asian Marrow Association of Recruiters, or SAMAR, Asians for Miracle Marrow Matches, or A3M, are stepping in to fill the minority void. Both organizations hold drives and programs to raise awareness around the issue. But it is not easy to convince people to register.

"It requires a lot of pre-education," says Enisha Narang, South Asian Outreach and Recruitment Coordinator for A3M. The NMDP says that, on average, a person needs to hear about bone marrow donation seven times before even considering registration. The relative success of drives, therefore, is not just about how many people register, says Narang. "Even if we don’t recruit a lot of donors, we’ve gotten information out."

And getting the word out seems to be helping. Narang says A3M targets South Asians where they live. "We organize drives, she says, "at all different sorts of events—wherever South Asian people gather, including temples, mosques, gurdwaras, and even in private homes."

SAMAR uses the same strategy of community and volunteer-based organizing. Dr. Asif Amirali, a SAMAR volunteer in New York City, says that they have been successful, since their inception in 1992, in directly recruiting—from start to finish--35,000 South Asians to register and helped to register 20,000 others. The rate of registration continues to rise.

Mrinmayee Kulkarni, 25, is one of the SAMAR volunteers who make drives and recruitment possible in America. Her work is driven by immediate necessity; Sagarika is one of Kulkarni’s best friends. Their families were neighbors in India, so they have known each other since they were small children and have kept in touch ever since. So when Kulkarni learned of her friend's disease, she immediately took action. "I had initially contacted SAMAR to get tested," says Kulkarni, but she realized that the cure is much more complicated than a single person deciding to register. "They [patients] don't have any other cure. Sagarika is undergoing chemotherapy but that's just buying time," says Kulkarni.

Knowing that her registration alone was not going to find Savur a match, Kulkarni began organizing drives in the Washington D.C. area, where she lives, and

encourages other South Asians to register. This summer, Kulkarni began volunteering and, in the first drive she organized herself, recruited 51 people. It has not been easy though. Like Narang, Kulkarni says that people in general, "are not educated enough." "Everybody has wrong notions about bone marrow transplantation and donations," she adds.

NMDP explains in their literature the process of bone marrow registration and donation. In the initial testing, a small amount of blood is drawn from finger of the potential donor. If the donor is found to match a patient, a few more tests are run and then--if the donor decides to continue--the donor chooses if he or she wants to draw marrow cells from the hip bone or the blood. According to the NMDP website, the marrow procedure takes about one hour and is done under general or local anesthesia, which is, again, the donor’s choice.  

Dr. Amirali says that a common misperception is that the marrow cells are taken from the back or spine, when in actuality, the needle goes into the hip bone on the side of the body—a much less painful experience. "A six month old child has donated through the hip-bone—so any one of us can do it," says Amirali.

To donate from the blood stream, the donor must receive special injections for a few days. In the actual procedure, the blood is drawn through the arm and then run through a machine. In that machine, marrow cells are separated out and stored away in a process called apheresis. aphaeresis. The blood, without marrow cells, is then returned to the body through the other arm.

Donors recover in one or two days and experience manageable aches. "Most people are able to go back to work the next day or the day after," says Amirali, "and any pain is manageable with Tylenol or Advil."

Kulkarni says, "The donation is not painful or life threatening as people believe. It's not like the surgery it used to be ten years ago." Furthermore, for minorities, registrations can be done free of charge through groups like SAMAR . The patients receiving the transplants cover any subsequent donations.

The cost of the procedures, however, is much less than the cost of not being able to find a match. Bone marrow and stem cell transplants are the only real cure for more than sixty diseases, including many types of leukemia and lymphoma, and anemia. While patients first try to match within their own family, nearly seventy percent of the 30,000 patients diagnosed with these diseases each year have to turn to the registry. NMDP has facilitated over 16,000 transplants; only about 400 of the matches have been for Asian patients.

That leaves Sagarika and 35 other South Asians in America right now who are waiting for matches, with more patients being diagnosed everyday. For Sagarika, a transplant does not just mean a chance to finish college and pursue her journalism dream—it means a chance at life.