CHENNAI, India -- India's first national bone marrow registry is a homegrown website thrown up to save a woman's life.
An American couple launched India's first national registry after a similar site saved the life of Pia Awal, who nearly died of leukemia in 2004 while she waited for a bone marrow donation.
Instead of gambling on the slim chance of finding a donor at the U.S. National Marrow Donor Program, she and her husband created a website called MatchPia to attract other South Asians more likely to match her genetic profile. The site recruited more than 33,000 South Asians and saved Awal's life.
Now, the couple has taken their efforts to India (click Project India button on left), a country that had no bone marrow registry to speak of.
"The closest thing to a national registry in India was two stacks of papers in Delhi and Mumbai of people who had given marrow in the past," Tim Dutta told Wired News. "They were unsorted and completely useless."
Since launching MatchPia, Dutta has recruited 4,100 potential donors in India and 69 people have found matches.
The program is in its early stages, but if it catches on like its American counterpart it could save many more lives in India.
Now, only about 800 patients find viable bone marrow matches in India, almost always through relatives.
Indian officials say 6,000 people in the country need bone marrow transplants -- a tiny number compared to 35,000 in the United States. But if diagnosis improves in India, the number would likely be much higher.
"Being that most patients in the villages and rural areas aren't even diagnosed or in most cases misdiagnosed for leukemia and blood-related cancers, it seems realistic," Dutta said. "Because these diseases are very expensive to treat for the average commoner, the real diagnosis is really swept under the rug."
Awal and Dutta began their quest to recruit bone marrow donors in 2004 when doctors told Awal she had a 1 in 28 million chance of finding a match because so few people of South Asian descent register to donate bone marrow in the United States.
The genetic variations that have evolved along geographical lines make it difficult to find matches among donors of different ethnicities. Until recently, campaigns for adding to the marrow registries have focused more on sheer numbers rather than genetic background.
The average Caucasian who registers with the National Marrow Donor Program has a 1 in 20,000 chance of finding a compatible donor -- much better odds. Many Caucasian patients have the luxury of picking and choosing between potential donors.
Facing terrible odds, the couple launched MatchPia. Awal found a donor and was soon in remission. A little more than two years later the site received 1.7 million visitors and 33,000 South Asians registered with the national marrow program.
A representative from the U.S. registry said program organizers are tying to attract donors from various ethnicities.
"The most positive aspect of MatchPia's presence as a recruitment group is adding more donors and creating opportunities for more patients (who are) searching," said Regan Hall Reinerth, manager of public relations at the U.S. National Marrow Donor Program. "We are working very hard to add more donors every day from diverse audiences."
A former Wall Street consultant, Dutta quit his day job to commit full time to the bone marrow effort. He persuaded corporations across India to launch recruitment programs and convinced hospitals and pharmaceutical companies donate money and lab work.
"There is no major registry of unrelated donors in India, so the only transplants we have been able to do have been through siblings," said Dr. Raja Thirumalairaj, senior consulting physician at Apollo Hospital in Chennai. "But when they don't match, which is most of the time, we look internationally. I have only had one patient who was able to find a match through them so far, but perhaps as things gain momentum that, too, will change."
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