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June 1, 1999

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SAMAR's New Bone Marrow Donor Drive

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Sonu Jain

Anand Kulangara Anand Kulangara, a 17-year-old high school junior, wants to be a doctor. He is a high achiever in a school in New York. He helps conduct cancer research at the Children's Cancer Research Laboratory in Valhalla in New York. He has one obstacle in his path: T-cell acute lymphoblastic leukemia.

"It is a wonderful feeling to help kids who have leukemia," he says.

But while Anand is offering his time and energy for a worthy cause, he too is waiting for a bone marrow donor.

And helping him in his efforts is the South Asian Marrow Association of Recruiters a seven-year-old organization.

Anand is one of the many South Asians who are being helped by the New York-based SAMAR.

Five years after the National Marrow Donor Program was created in America in 1987 to provide marrow transplants to patients, Rafiya Peerbhoy Khan, a certified histocompatibility specialist with a long-term involvement in transplants, formed SAMAR.

She had known for a long time the registry maintained by NMDP had very few people of South Asian origin. She decided that SAMAR was going to help NMDP and other allied organizations fighting leukemia by helping South Asian patients. SAMAR has held many bone marrow donations drives and one such drive is slated at Elmhurst Hospital, Elmhurst, in New York on June 5, between 11 am and 3 pm.

"Presently, NMDP maintains a registry of 3.3 million HLA typed caring volunteers for potential marrow donation, but only 25,000 are of South Asian origin," she says. "Since a match is found 1 in 20,000 from the same racial group, our patients' chances are grim. It is vital that South Asians make a personal commitment to become involved in saving the lives of our patients."

Apart from holding its own drives, SAMAR reaches out to several thousand people during religious, social, business gatherings and to students at educational institutes, recruiting more than 15,000 volunteers.

"Our goal is to increase the number of volunteers to 50,000. Today there are 35 patients anxiously awaiting a transplant, while four have been transplanted during the past year," she says. "To achieve this goal and increase the patients' chances of finding a matched donor, SAMAR plans to support the registries in India and other South Asian countries and Link them to NMDP."

India has the expertise and technology to type and register numerous donors, but HLA testing material (reagents) must be imported.

SAMAR urges healthy individuals between 18 and 60 years to volunteer to be tested; only two spoons of blood is required for the test.

Among the successful stories of SAMAR's drive is 13-year-old Sultan Ali Sayed, who was diagnosed with leukemia four years ago.

The bone marrow of family members did not match no one in his family matched him. SAMAR gave support to his family by appealing to South Asians on his behalf and also for other patients who needed a marrow transplant to join the national registry.

The search through NMDP registry got him a 100 per cent match, but the person changed the mind at the last minute.

In stepped a man who was not South Asian but whose bone marrow matched almost 100 per cent to that of Ali.

The donor, New York Detective Joe Gaff, remained anonymous for several months. He met with Ali three years ago, 13 months and 10 days after the transplant.

Ali's story not only symbolizes the donation of marrow and extension of life, but also marks a rare occasion where a "racial crossover" has taken place- a Caucasian has donated bone marrow to an Asian. Usually a patient's best chance outside the immediate family is someone of the same racial or ethnic group. This is also a tribute to the ethnic diversity and racial harmony of New York City.

For more information, contact, SAMAR (718) 592-0821 or e-mail samar@brain-link.com.

Sonu Jain is a post graduate student at the Hahnemann School of Medicine. Part of this article ran in the AAPI Journal.

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