U.S. couple sets up bone marrow registry in India

By Varsha Tickoo

BANGALORE (Reuters) - Venture capitalist Tim Dutta spent a morning scraping the insides of employees' cheeks at one of India's biggest software firms as he tried to save other people from a disease that almost killed his wife.

Dutta aims to create the world's largest registry of South Asian bone marrow and stem cell donors after discovering the current shortage the hard way: his wife Pia developed leukemia in 2002 at the age of 27 and the couple struggled to find a matching donor to save her life.

"We were devastated," recalls 36-year-old Dutta, who was born in India but now lives in New Jersey in the United States.

"When we first started, there was no where to go to, no one to turn to. A match was not on our cards anytime soon, as there are so few South Asians registered as donors."

The cancer was attacking Pia's bone marrow and interfering with her body's production of blood cells.

Doctors told Pia the best chance of survival would be to receive a transplant from a donor to replace her diseased bone marrow with healthy blood stem cells -- the cells that can develop into different types of mature blood cells.

But a successful transplant requires the cells come from a donor with a genetically identical or similar tissue type.

The best donors are usually among the patient's immediate family, but in Pia's case a match could not be found. After that, patients are most likely to find a match within their ethnicity.

So the couple looked at the 10 million potential donors signed up to America's main bone marrow registry, the National Marrow Donor Program (NMDP), and its partner registries around the world. But the news was disappointing.

"About half of the patients searching for a match cannot find a suitable donor," explained Dr. Jeffrey W. Chell, NMDP's chief executive officer, in an e-mail.

He said that South Asians are particularly under-represented on donor registries, making it difficult for cancer patients of South Asian origin to find donors.

"Some parts of the world such as Europe and Australasia have well-developed donor registries," he explained. "Other areas like Africa and South Asia would benefit from more donor registries."

Bone marrow campaigners say it is difficult to raise awareness in India as communities are fragmented by language barriers -- more than a dozen different languages are spoken -- as well as at least half a dozen religions, from Buddhism to Islam, with varying views on medical intervention.

DEFEAT NOT ACCEPTABLE

With the bad news from the NMDP, the Duttas had blown what Tim says was their 1 in 20 million chance of finding a match. Tim was told to enjoy whatever time he had left with Pia.