india

Updated: Feb 26, 2019 23:35 IST

The government is setting up a National Stem Cell Registry to create an India-specific bone-marrow donor database for treatment of life-threatening blood disorders such as blood cancer, thalassaemia, sickle-cell anaemia and haemophilia.

Creating a pool of donors will help people who do not have blood-related donors find an unrelated match for life-saving treatment.

The Union health ministry’s move to have a national, government managed database will specifically help poor patients as they largely are unable to afford treatment. “All the approvals are in place; we are ready to start the registry anytime,” said a health ministry official on condition of anonymity. The ministry plans to link five India-based registries to the national database.

The registry will not bank stem cells but only take buccal swab samples — swabs from the inside of the cheek — for human leukocyte antigen (HLA) analysis, by which a person’s DNA will be derived in order to find the closest match to perform a bone marrow transplant. The data will be maintained through a non-invasive process and people will not have to donate.

People, especially children, with blood disorders such as thalassemia, sickle cell anaemia and haemophilia require frequent blood transfusions. A bone-marrow transplantation is the only cure.

“We have 400,000 Indians registered with us as donors, and have helped perform at least 500 transplants using our donors to date, which is still not enough. It’s a good initiative, we have been intimated that they want to work with us,” says Raghu Rajagopal, CEO, DATRI, which is one of the largest stem-cell registries in the country, and is among the five that will be integrated with the registry.

Though there is no official India-specific data, 350,000-500,000 people in India suffer from life-threatening blood disorders. About 5-6% of the population are carriers of thalassaemia traits; if two persons with the traits marry, the child is likely to have the disease. “A large number of patients with severe disease don’t opt for surgery because they can’t bear the treatment cost. If there’s no sibling match, using international registries is the only option, which escalates transplantation cost to ~30-35 lakh...,” said the official.

“Around 10-20% patients who need bone-marrow transplantation find a donor among the existing private registries,” said Dr Anupam Sachdeva, director, Paediatric Bone Marrow Transplant unit, Ganga Ram Hospital.