ARE YOU ON THE LIST?

Donating stem cells to save a life is now a painless, noninvasive process. It’s as simple as donating blood. And nonprofit registries across India are doing what they can to popularise the idea

am the youngest in the family, I am just a year old,” says Garima Saraswat, 34, a sales manager from Delhi, who underwent a bone marrow transplant for her leukaemia or blood cancer last year and got a second chance. When she received her diagnosis in December 2016, she was given only a few months to live. Saraswat was not prepared to leave her five-year-old son behind. So she took her doctor up on the offer of a bone marrow transplant. But where would the marrow come from? DATRI came to her aid. The non-profit maintains the largest stem cell donor registries in the country with 3 lakh people. “I had 9 matches, some people declined, but I finally found a donor. I had the transplant in February 2017 and am regaining my strength,” says Saraswat.

She met her donor Gurumurthi this week in Delhi. Gurumurthi, who goes by one name, works as a car repair mechanic at a Honda Showroom in Coimbatore, Tamil Nadu. He registered as a donor in 2015 when the family conducted a drive to find a donor for his niece with thalassemia.

“When I got a call for donation, I was happy as I knew that I’d be saving a life. Looking at her I get so emotional. She’s the same age as the sister I lost.” he says.

THE SHORTAGE

For a bone marrow transplant, doctors match donors according to the human leukocyte antigen (HLA), a group of genes that are responsible for the regulation of the body’s immune system.

Once the donor’s HLA type matches with a transplant patient’s, he or she will have to go through a physical examination. “We send our doctors to the donor’s residence daily for five days to inject a drug called G-CSF (Granulocyde-colony stimulating factor) to increase the number of stem cells in the bloodstream. The donation occurs on the sixth day and then there’s a free follow-up check to ensure that the donor has no negative reactions,” says Dr Sunil Parekh, haematologist and chairman of Marrow Donor Registry India

For a bone marrow transplant, the usual route has been to look for donors from the family – usually siblings who may match. “If no one matches, there are small registries run by a few not-for-profit organisations in the country. The next preference is given to a half-match HLA,” says Dr Jyoti Kotwal, head of the department of haematology at Sir Ganga Ram hospital.

The chances of having a completematch sibling is one in four. And with so few registries, many who need bone marrow transplant cannot get it.

“Only 10% of the people who need a bone marrow transplant manage to find a match. Every month we get a request for nearly 200 matches, but we are able to get a donor for only 12 or 15 people,” says Raghu Rajagopal, DATRI’s co-founder and CEO.

An estimated 10 to 12 thousand children are born with thalassemia major every year, according to a recently published study. All of them need bone marrow transplants, without which they have to get blood transfusions leading to iron deposition on their organs and organ failure. Leukaemia patients are the next most common group. “Around 16,000 people in India are diagnosed with leukaemia every year, 10% of them need a bone marrow transplant,” says Dr Kotwal.

The decade-old Mumbai non-profit Marrow Donor Registry India (MDRI), is a team of 13 healthcare professionals building a database of donors. “So far 40,000 donors have listed with us and we have aided around ten stem cell transplants, including two underway,” says Dr Parekh.

“A country with a population of 134 crores, should have a registry of at least 5 crores,” says Kapil Gupta, co-founder at GeneBandhu, which has 14,000 donors.

A REGISTRY FOR INDIA

Garima was lucky to find a match. Others like Dony Kuriakose are not. He is still looking for a match in Kerala for his 32-year-old nephew Aashim who was diagnosed with leukaemia last year and at Mount Sinai hospital in New York City.

“We find matches for north Indians among Caucasians and Germans. For people from South India, Indians are the best match,” says Dr Kotwal.

Cost is also an issue. “Most organisa-

MYTH: The process is painful and lengthy

FACT: Peripheral Blood Stem Cells (PBSC) donation is a non-surgical, out-patient procedure involving blood donation from the arm vein. No large needles are used as with marrow extraction from the spine. MYTH: Donation may weaken the donor FACT: Only five percent or less of a donor’s stem cells are needed for the procedure which is replaced by the body within four to six weeks.

MYTH: There may be severe side-effects and recovery will be slow

FACT: Sometimes, donors may have symptoms similar to a flu (headache, fatigue) because of the drug called G-CSF injected into the body ahead of the donation, but these generally disappear in a day or two after the process.

(With inputs from MDRI)

tions that maintain these registries in India are not for profit and charge only the cost of operations. But, the cost for stem cells required for one transplant can go up to Rs 5 to 7 lakhs. If larger databases are created, this cost will come down,” says Gupta. Apart from that, having a large database at home will mean that people will not depend on global databases, procuring from where could cost anywhere between Rs 20 to 40 lakhs.

THE NORTHSOUTH DIVIDE

DATRI’s database shows that the highest numbers of registered donors are from southern states of India. Kerala takes the lead with 60,630 registrations. Registrations are much lower in Chandigarh (883), Rajasthan (1,158), Punjab (3,468), and Haryana (4,816). Nearly 6,000 donors from Delhi are registered with DATRI.

“Most people do not know about stem cell donation and the ones who know think that they need to undergo a painful procedure. This is absolutely not true. Now, donating bone marrow is as simple as donating blood,” says Rajgopal.

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