The Marrow of Life

Sagarika Savur was set to graduate from the University of California, Irvine last spring. She was planning to move to New York and try to make it as a journalist.

But a sudden attack of headaches and breathing problems altered the 22-year-old's plans. In a matter of hours, she discovered that she had acute myelogenous leukemia, or AML, a cancer that affects the blood and bone marrow.

Today, instead of rushing to 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 Aug. 15 for a second round of chemotherapy, but she has still not gone into remission. A bone marrow transplant is the only treatment option left for Sagarika. So she 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 Sagarika's father, Anand Savur. "Her only hope is a bone marrow transplant," he says, adding, "Time is critical now."

AML produces leukemia cells quite rapidly. Without any treatment, the disease can be fatal in a few months. Sagarika's battle is an especially difficult one; not just because of the pain caused by leukemia or of the side effects of chemotherapy – but because Sagarika is South Asian.

A patient must find a bone marrow donor whose tissue type matches his or her own. The highest chance of a match comes first from within the patient's immediate family, and second from someone within the same ethnic group – the common genes allow for similar tissue types.

AML is a type of cancer in which the patient cannot produce enough healthy blood cells because of unhealthy bone marrow, the tissue inside the bone that creates different types of blood cells. People with leukemia do not have enough healthy marrow cells, more commonly known as blood stem cells (not to be confused with embryonic stem cells, which come from human embryos). Blood stem cells are blank, not-yet-mature cells that have the capability of becoming platelets, red or white blood cells. In individuals with leukemia, the unhealthy blood stem cells create too many immature white blood cells, which in turn become leukemia cells. These leukemia cells make a patient susceptible to infection, and can cause bone pain, fever, and a host of other symptoms.

Because there are thousands of tissue types out there and fewer than 65,000 South Asians registered as potential donors, a South Asian patient's chances of finding a match is much less than a Caucasian patient. South Asians are not the only minorities in America in this predicament; out of more than five million potential donors registered, only about one million identify themselves as being in a racial minority.

For Sagarika, this means that she can only seek a match from the less than 1 percent of registered donors in America who are South Asian. Because the United States has the only national, centralized registry that includes a significant number of South Asians (South Asian countries, like India and Pakistan, do not have centralized registries), Sagarika and 35 other South Asian Americans like her are hoping that more South Asians will join the national registry to increase their chances of finding a match. In 2003, the national registry was only able to match about 2,000 minorities, out of over 15,000 matches in total.

The National Marrow Donor Program (NMDP) organizes and maintains the registry; of the 5.4 million people in its database, only 64,000 are of South Asian descent. Groups like the South Asian Marrow Association of Recruiters, or SAMAR and 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.