MUMBAI: Healthy stem cells from a person of the same genetic make can mean life for Stanford University professor Nalini Ambady, or death if she doesn't find a donor in a month's time. A matching donor, recently found in Mumbai after an almost six-month-long search across India, backed out after initially consenting to stem-cell donation.

When her eight-year-old leukemia made a comeback last year, doctors in the US suggested she look for an Indian donor for a greater match probability, given ethnic similarities. After failing to find a match in the US' National Marrow Donor Program (NMDP) that boasts of a database of 10 million registered donors, Ambady's family finally directed their search towards India last November. Yet, two prominent stem cell donor registries in India with a combined pool of 50,000 donors could not find a match until recently.

Beating the odds of one in over 20,000, the unexpected happened last week when city-based Marrow Donor Registry of India (MDRI) found the Human Leukocyte Antigens (HLAs) match in a software engineer. HLA match refers to immunological compatibility, and doctors look for a match in at least 10 counts of crucial antigens to go ahead with a transplant. Coincidentally, not only did the donor hail from Ambady's hometown in Kerala, six out of 10 HLA parameters also matched. But Ambady's hopes crashed when after initially giving consent and registering as a donor, the engineer refused to go ahead with the donation citing health and later family problems.

Several rounds of counselling by members of MDRI, including founder head Sunil Parekh, did not cut much ice. Parekh said this was the sixth instance where the registry failed to convert a match into a transplant. Ambady's family and students have started a massive campaign across social media websites to hunt for a donor in time.

"Since we started the registry in 2010, there have been 55 requests for a match and we have managed to find six matches so far. But barring one instance, the donors backed out in all cases," he said, adding donor attrition has emerged as the biggest problem in the way of unrelated stem-cell transplants in the country.

While over 500 related stem cell transplants are carried out to cure leukemia, lymphoma and several other life-threatening cancers in the country annually, the numbers drop to almost one-tenth when it comes to transplants through unrelated donors. Also, in most of the unrelated stem cell transplants, the cells have to be imported from the US. "Just because the cells are imported, the cost of transplant could go up to around Rs 50 lakh and therefore remains out of bounds for the majority," said Dr Navin Khattry of Tata Memorial Hospital's Advanced Centre for Treatment, Research and Education in Cancer, which is the only one to carry out unrelated transplants in Mumbai. "The solution to this is obviously having a larger database of Indian donors," he said.

In global registries too, ethnic groups, particularly Asians, are not too well represented, which majorly reduces their chances of finding a match. According to Parekh, the problem of donor attrition only aggravates it and adds to the higher mortality rate. Donor attrition is usually due to apprehensions about the process and its long-term outcome. However, Parekh said stem cell donation, like blood donation, has no long-term effects on the donor and cells are replenished in six to eight weeks.

However, Raghu Rajagopal, the co-founder and CEO of Datri, which has the biggest database of 36,000 registered stem cell donors, said even global registries face an attrition of about 50%. "But in their case, if one donor backs out, there would be three more willing to come forward," he said.

Datri has also been holding camps for Ambady in Kochi. Ambady's family and friends, however, have appealed that only those who are serious about donating should come forward.

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Stem cell donor ditches Stanford University professor