India’s still nascent organ transplant programme is making progress, and it’s not just things like life-saving traffic green corridors that are smoothening out the wrinkles. Efforts to increase the knowledge base are taking off and crucial policy decisions are taking shape, triggered by recent events in organ transplants.
On October 5, officials of the National Organ and Tissue Transplant Organisation (NOTTO), National Informatics Centre (NIC) and other stakeholders will meet to draw a road map for documenting patient progress, networking all transplant hospitals of the country and also figure out the official policy to treat out-of-turn requests for organs.
It’s not enough to have a database of donor pledges. A critical new initiative plans to map post-transplant survival rate of patients. “The NIC is developing a national registry of organ and tissue donors,” Dr. Anil Kumar, nodal officer, NOTTO, told The Hindu . “It is partly developed and is accessible through the NOTTO site. The registry will help in maintaining data and surveillance, but we also want it to be used for academic research and to study outcome. After the transplant, patients have to be followed up and even that data should be fed, which will help figure out the post-transplant survival rate.”
The Indian Society for Organ Transplant (ISOT) started work on a similar registry a few years ago. Narayan Prasad, secretary of ISOT, said, “The sole aim of this registry was to see the outcome of the transplant, but only few centres shared their data. Doctors and hospitals resisted it.” As Professor of Nephrology at the Postgraduate Institute of Medical Sciences, Lucknow, Dr. Prasad said he had himself been recording this data since 2004.
If NOTTO is successful, it could possibly be a larger collation than ISOT’s, given that 125 hospitals are linked to the NOTTO registry that the NIC is developing. But it’s an ambitious plan. Those in the field point out that most transplants are taking place in private hospitals, and until the government makes it mandatory for them to share data, they will remain cagey.
Family tiesAbout 10 days ago, approvals had to be issued overnight by Union Health Ministry officials to allow a brain-dead man’s kidney to be donated to his brother, who had been on dialysis for two years and was at number 162 in Mumbai’s waiting list for kidneys. The approval helped him jump the queue.
“There was a similar case in Tamil Nadu two or three years ago when a near relative had sought an organ of a loved one. We gave it,” said J. Amalorpavanathan, convener, Tamil Nadu Cadaver Transplant Programme. He, however, said such cases were rare and could be dealt with locally on a case-by-case basis. So did it need a policy change? “Of the 800 donations since 2008, there was just one such request. The local committee can take a call on such cases,” he said.
“This case was a coincidence where one brother was dying and another was on dialysis,” Dr. Kumar said. “It was an emotive issue. And it is natural for any family to feel like this.”
He said such demands could be made in the future — and approvals could be restricted to allow near relatives of a brain dead patient to get organs — but there is a need for a discussion on what the policy should be regarding requests by distant relatives.
“NOTTO may have to modify the policy [on cadaver organ donations] and we are discussing it as a follow-up to the Mumbai case.”
The concernsOfficials say that while the national registry will have robust data of donors that can be viewed by all hospitals, and where they can feed in details of patient progress, there are concerns ranging from maintaining donor confidentiality to ensuring that it is an inclusive exercise.
Sunil Shroff, managing trustee of Mohan Foundation, Chennai, said, “These are wonderful initiatives,” but felt the need to look at larger policies in detail. He said that there was no compulsion for State governments yet to share their data: “A national task force should be set up for their implementation.”
Besides, the network that the government is creating is not as inclusive as it should be. “There are only 200-300 licensed hospitals to harvest organs and do transplants,” Dr. Shroff noted, saying that he, for instance, had received calls from places such as Nainital where a family wanted to donate an organ but didn’t know how to go about it.
In short, the steps that the government is making are progressive, but there is still a lot to be done.
