What do a beauty salon owner, a bore well contractor, lab technician and several software consultants have in common? The answer will, very likely, not occur to you in your wildest dreams. They are all committed bone marrow transplant donors, enrolled in one of the four voluntary bone marrow registries in the country.
Bone marrow transplants, sometimes, are the only life-saving interventions for people with certain conditions, including cancers of blood cells (leukaemia, myeloma), blood disorders (thalassaemia) and some genetic disorders (Hurler Syndrome). However the process of finding a bone marrow donor is tougher than the toughest thing you have ever done. Very few registries (bone marrow donor) exist, even worldwide, and when it comes to India, fewer still, to cater to the specific Indian gene pool.
N.K. Mehra, Head, Department of Transplant Immunology and Immunogenetics, All India Institute of Medical Sciences, New Delhi, is acknowledged by all in the sector as the leader in Human Leucocyte Antigen (HLA) typing in the country. He says, “Research carried out at AIIMS has shown that the population of India, even though similar in broader terms with the Caucasian population, has many novel HLA genes not occurring in that population.” The diversity of HLA genes in the Indian population is extremely vast, he adds.
Therefore, the existing pool of 19.6 lakh bone marrow donors across the world is not of much use to India, Dr. Mehra reasons. In actual terms, this means that Persons of Indian Origin have a one-tenth chance of finding a donor from this pool, compared to a Caucasian. “In a diverse country like India, we need a registry of one million donors, if we are to meet over 40 per cent of the requirements for bone marrow donors,” he adds. “There are probably just over 50 donor registries worldwide, with about 20 million registered donors,” explains Raghu Rajagopal, CEO, Datri Blood Stem Cell Donors Registry. As of today, India has four registries, and an estimated under 40,000 enrolled donors.
“Over the years, several attempts have been made to create such registries in India,” says Sunil Parekh, chairman, Marrow Donors Registry (India) at the Tata Memorial Hospital, Mumbai. However, a curious set of factors, due to logistical difficulties, financial constraints, lack of interest and support from health authorities, non-availability of indigenously manufactured diagnostic equipment and test kits required for HLA typing of donors, these attempts were not successful, he explains.
The chances of getting a match from the US registry are low, given our HLA pool, says Revathi Raj, paediatric haematologist, Apollo Hospitals, Chennai. “As for South Indians, in our experience, it certainly is tougher,” she adds. “Getting stem cells from the US registry alone could cost a patient up to Rs. 17 lakh, and you have to add to that the cost of the transplant and hospitalisation.” Things have become slightly easier since 2009, she adds, with a number of voluntary registries coming into play.
The first and oldest registry in the country is the Asian Indian Donor Marrow Registry set up at the All India Institute of Medical Sciences, Delhi. It was set up way back in 1994, pioneered by Dr. Mehra. It has a total of 4,000 to 5,000 donors registered.
Datri, meaning ‘donation’ in Sanskrit, was set up by Raghu Rajagopalan, in association with HLA typing experts from the US, Nezih Cereb and Soo Young Yang, in 2009. The registry now has about 21,000 donors. They have facilitated about 15 bone marrow transplants across the country.
Subsequently Bharat Stem Cell registry was set up, about 7 months ago, and now has about 1100 voluntary donors listed, according to Vimarsh Raina, its adviser. The MDR (I), Mumbai, has on rolls over 10,000 donors with their HLA typing done.
Clearly, this is insufficient to meet the demand. Dr. Raina says there are at least 30 -50 requests for bone marrow donations every month. That makes the recruitment of donors the primary task of the registries. Mr. Rajagopalan says Datri conducts donor drives across the country, primarily in corporate offices, talking to them about the process of donation (see graphic). “The process we use now is simpler than the older method of tapping the spine for the bone marrow, requiring hospitalisation for the donor. It is like a blood donation, and yet can be intrusive. Despite this, response has been enthusiastic,” he says.
Nikhil Kumbhar is an employee in software major, who has actually signed up (with Datri) and donated his blood marrow. “I might have been hesitant initially, because this involved taking injections and all that, but meeting patients on wait for BMT changed all. I told myself, ‘I can do this much.’ It also turns out the injections were not so difficult. I’m happy to have donated.”
But registries are not populated by Kumbhars alone. The process of making sure a donor registry is alive and valid is also tough. The world over, about 10 per cent donors fall off after a year. Dr. Mehra says this is true from experience — some donors just disappear. The challenge is to keep them all willing, and available right through.
It was one of those willing, available donors that helped Sukanya (name changed) a baby who was born with a rare genetic disorder — Hurler’s Syndrome. Her first transplant, cord blood, failed and her parents began the hunt for a bone marrow donor. Their search stopped with Datri. “Within two hours we were given a list of 8 donors with a good match. Since we had also spent much money with the first procedure, they even provided us with discounts worth several lakhs,” her father says with great relief.
Dr. Revathi Raj says finding donors has become relatively easier since 2009, but concurs with Dr. Raina that much work remains to be done in the country. While Datri has actively sourced and found donors, the other registries are also gearing themselves up to place donors within reach of patients.