Patients dying due to lack of stem cell, bone marrow donors

Two-year-old Garvit Goel had to wait for over one year to get a donor for stem cell treatment for cure of his thalassemia, a life-threatening blood disorder.

But Garvit, hailing from Panipat in Haryana, was lucky to get a donor. Thousands of patients die in India every year as it is very difficult to get stem cell donors in the country, unlike in Western countries.

Garvit had undergone blood transfusion immediately after he was detected with thalassemia at a hospital here when he was just six months old. The doctors at the BLK Super Speciality hospital suggested stem cell transplantation as cure for his disease.

Goel's sibling was not a matched donor and for his parents, getting a donor outside the family was a herculean task.

Finally after a year-long struggle, the parents with the help of doctors could get in touch with Datri, an NGO which helps patients get donors for stem cell therapy.

"We found a suitable donor for Garvit in Datri database and performed the unrelated peripheral blood stem cell transplant in April last year. Garvit is doing fine," said Dr Dharma R Choudhary, director, BLK Super Specialty.

The donor, 34-year old Sumeet Mahjan who is working with a Bangalore-based software company, had registered himself with Datri when one of his colleagues’ child was diagnosed with Leukaemia.

Dr Vinod Raina, one of India's leading oncologists, said India was lagging far behind in its requirement of stem cell donors to treat life-threatening diseases like cancer as around 500 such transplants take place annually compared to a requirement of 50,000.

Experts said it was not easy for patients to get possible match for stem cell therapy as for every patient, at least 20,000 donors are required to be searched.

Chief of Hemato-oncology and Transplantation department in Rajiv Gandhi Cancer Institute and Research Centre Dr Dinesh Bhurani said there are large number of patients having blood disorders.

They have to wait for long to find stem cell donor. "Firstly, there is lack of awareness, most people don't even know that there is a need for donor for bone marrow transplant.
"Secondly, there is a fear factor. Most people are sceptical to become a donor thinking that it will have adverse effect on their health," he said.

Raina, Director of Medical Oncology and Hematology at Fortis Memorial Research Institute, said the US had a registry of 22 million donors in a population of 317 million, but in India the figure was a poor 40,000 donors in a population of 1.2 billion.

Raina said both government and private sector have to work hand-in-hand to create a registry of donors on the lines of similar networks in the US, UK and Germany.

Dr Mammen Chandy, director at Tata Medical Centre, Kolkata, said thousands of patients die every year in India as there were not enough donors for stem cell and bone marrow.He said the treatment cost Rs 25-30 lakh and often most of the patients cannot afford the treatment.

Chandy said stem cell donation is just like blood donation and there was a need to improve awareness among people about it.

"We need to ramp up medical infrastructure for offering stem cell therapy. We need more transplantation centres, more trained physicians," said Chandy.