“I only had my second child because the doctors told me the baby may help save my first-born,” says Archana Ingawle, mother of two little boys. When the baby thus born could not help, the family had given up hope, until a stem cell registry threw up a perfect donor match.
Her first son Rishi, Ms. Ingawle had earlier said, was diagnosed with a rare disorder in the first few months of his birth and needed a bone marrow transplant. As she holds her now- healthy boy, sleeping in her arms, she makes a key point: “Please do register to be part of the Stem Cell donor registry. It will give people an opportunity to give patients like my son a second chance at life.”
Rishi is now a cheery five year old. “When it turned out my second son’s cord blood was not a match, we just gave up. For three years, we had been hunting for a stem cell donor; what more can one do anyway? That is when our doctor at Chennai, Revathi Raj, told us that they had found a 10/10 male donor match through Datri’s Stem Cell Registry, and that Rishi could have a bone marrow transplant. I cannot tell you how I felt when I heard there was a donor.”
Mr. Jayakumar found his daughter needed a stem cell transplant even before she had turned 10 months old. “It was a terrible shock for the family and we looked everywhere for a donor. Finally, when we found one, it was from the same registry. This is why I’m telling you to be a donor – you really save a life. I know what it means.”
“The chances that you find a match within your own family is at best only about 30 per cent,” explains Revathi Raj, paediatric haemato-oncologist, Apollo Specialty Cancer Hospital. Which is why adult stem cell banks gain importance. Though there are an estimated 20 million registered donors worldwide, the chances of finding a match are low unless there is an ethnic similarity with patients. A 10/10 adult donor is the first choice for an oncologist, Dr. Raj says, followed by a 6/6 cord blood match. In an emergency, cord blood would be the first choice as the process to an adult stem cell transplant can take between four and six weeks.
Datri, an NGO, has enrolled 42,000 donors. “About 50 per cent of donors drop off. It is the trend world over. We are now telling our donors to sign after consulting their relatives,” says Raghu Rajagopal, CEO, Datri. He stresses the need to create an Indian registry. Of the 20 million people in 50 plus international registries, only a small percentage are Indians. It can cost up to Rs. 20 lakh to get stem cells from an international registry, apart from the huge costs involved anyway in transplantation.
Datri along with Apollo Hospitals has launched an awareness drive to attract donors. Similar drives are on, across the country, Mr. Rajagopal says, but none of them currently with other hospitals.