When 27-year-old Inderjeet Mehra was diagnosed with aplastic anaemia, a condition in which stem cells cannot manufacture any cells in the blood, last September, his only hope lay in a bone marrow transplant.
But Mehra did not have any sibling. After failing to get an Indian donor, Mehra started looking at the possibility of finding a German donor.
He finally found a match six months later, but the cost proved a problem. The transplant costs about Rs 20 lakh — the majority of the expense was to transport the stem cells to India — and this has kept him from getting the life-saving treatment.
Mehra and several other patients like him are waiting for suitable donors and an appropriate financing mechanism to carry forward stem cell transplants that can save their lives.
Speaking at a summit organised by NGO Bharat Stem Cell on the increasing need for creating a bone marrow registry, Dr Mammen Chandy, director at Tata Medical Centre, Kolkata, and a transplant practitioner, said, “The sheer cost of a transplant makes it important to have a registry with donors who are locally available. There is a growing need to make policymakers aware of the need to set up such a registry.
Whenever a patient taps a foreign donor, the cost of transporting stem cells is so immense that it becomes impractical.”
Experts from the National Marrow Donor Program (NMDP) in the US said a national donor registry had emerged as the only possible solution to connect recipients and potential donors.
Vivek Kumar (18), from Farrukhabad in Uttar Pradesh, donated stem cells to his brother who was diagnosed with aplastic anaemia in 2010 at AIIMS.
“For three years, we tried to arrange financing. We have a BPL certificate and we went to several politicians requesting help. Finally, we sold our ancestral land to finance my brother’s treatment,” Kumar said.
Many other families, who found donors among their relatives, have volunteered to turn potential donors to help others who may not be so lucky.
Five-year-old Sivansh donated stem cells to his brother who had a relapse of leukaemia in 2010 when he was three years old. Today, his father Amit Aggarwal says both he and his wife, who had to get their HLA typing done to see if they were a match for their elder son, have volunteered to become donors.
“Both of us did not match with my elder son, but my younger son did. I cannot tell you the trauma of waiting. I have told doctors that if anybody matches my blood type, I will make myself available within 24 hours.”
Dr Vimarsh Raina, director of pathology at Medanta Medicity in Gurgaon, said against a need of at least 50,000 stem cell transplants a year, only 500 transplants could be undertaken.
Dr V K Subburaj, secretary, department of AIDS Control, Ministry of Health and Family Welfare, said, “Stem cell transplant is a complex procedure and is a challenge even in developed countries. What is required is awareness building and constant follow-up from the industry.”
Dr Dinesh Bhurani, chief of haemato-oncology and transplant department in Rajiv Gandhi Cancer Institute and Research Centre, said people in India are sceptical about donating stem cells as they think it will have an adverse impact on their health.
“It is just like blood donation, with no adverse side effects. Clearing misconceptions will lead to an increase in the registry enrolment,” he said.