The Marrow of Life

By Angilee Shah, AlterNet. Posted October 12, 2004.

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.

"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, gudwaras, 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.

SAMAR is also focusing some of its efforts in creating a national registry in India, which would be available for South Asians both on the subcontinent and in America. They face significant hurdles though.

"It's not easy to get the [Indian] government to commit resources to something like bone marrow registry," says Amirali. So SAMAR is looking for money from private and public sources to build the special labs and pay for testing. Because of the time it will take to begin the registry, plus the time is will take to build a list of donors, Amirali says, "It's going to take years to have a fully functioning registry [in India]."

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. When Kulkarni learned of her friend's illness, 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.

Potential Donors on the National Registry African Americans: More than 430,000 American Indian/Alaskan Natives: More than 65,000 Asian: More than 350,000 Hawaiian/Pacific Islanders: More than 7,000 Hispanic: More than 400,000 White: More than 2.8 million Did not identify race: about 1 million Total: More than 5 million SOURCE: Patrick Thompson, Senior Public Relations and Media Outreach Coordinator, National Marrow Donor Program

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, 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 its literature the process of bone marrow registration and donation. In the initial testing, a small amount of blood is drawn from the 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 hipbone or the blood. According to the NMDP web site, 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 a common misperception is that the marrow cells are taken from the back or spine, when in actuality, the needle goes into the hipbone on the side of the body – a much less painful experience. "A six-month-old child has donated through the hipbone – 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 aphaeresis. The blood, without marrow cells, is then returned to the donor's 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 10 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 60 diseases, including many types of leukemia and lymphoma, and anemia. While patients first try to match within their own family, nearly 70 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 countless other minority patients waiting anxiously for matches. For Sagarika, a transplant does not just mean a chance to finish college and pursue her journalism dream – it means a chance at life.

              

Angilee Shah is a freelance writer in Southern California and the editor of ABCDLady Magazine.

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