Tamil Nadu has become a leader in cadaver organ transplant. The transformation was slow, deliberate and made possible by some committed people.

A little more than a decade ago, the southern metropolis of Chennai was the hub of organ commerce. So much so that Villivakkam, a locality in the city, was notoriously nicknamed ‘Kidneyvakkam’ (land of kidney trade) for the number of kidneys being sold in that area.

Today, the State finds itself in the middle of a glorious transformation — inspiring enough to find mention in the latest instalment of ‘Mann ki Baat’ address by Prime Minister Narendra Modi. Late last month, he encouraged organ donation, citing Tamil Nadu’s example, going on to say that the State was the leader in cadaveric organ donation — the closest approximation to a fairy tale.

Ramya Kannan Ramya Kannan

The Transplantation of Human Organs Act (THOA) implemented to cut organ commerce in the country had been in force since 1994, and yet it seemed to make no difference whatsoever to the situation on the ground. In their 2003 paper on Regulation in Health Care in Tamil Nadu, V. R. Muraleedharan and S. Ram Prasad of IIT Madras told it as it was. “THOA in its present form has failed to keep a check on the commercialisation of organs thereby resulting in increased exploitation of the poor. We observed apart from Villiwakkam which became infamous as Kidneywakkam, that people living in slums in Foreshore Estate, which is situated in the heart of city of Chennai, have sold their organs for money.

Meanwhile, a number of aware, well-intentioned people in Tamil Nadu were losing sleep over this. “I was aghast that people had to live by selling their precious organs and they were openly auctioned -well, almost- in the market with everyone looking on,” says J.Amalorpavanathan, a vascular surgeon by training, and a cadaver transplantation evangelist by passion. He is currently the member secretary of the Transplant Authority of Tamil Nadu (TRANSTAN), possibly the only such authority in the country. He was lucky; he was not alone. In 1997, MOHAN Foundation, an organisation that is now the go-to unit for clarity on aspects of cadaver donation, had been formed by Sunil Shroff, a urologist, with like-minded folks. Other senior physicians and surgeons who had been abroad and were keen on setting a system in place joined in. The National Network of Organ Sharing (NNOS) which was set up in 2005, brought in crucial expertise. The big fillip however came, as it does usually, when the State got involved, but interestingly, in a not-so-usual fashion.

“We needed an out-of-the-box approach to give it a push — a non-bureaucratic approach. Luckily that kind of thing happened in Tamil Nadu — an informal arrangement of a few committed people working together to focus on the end result, not a top-down approach. The process began to evolve, and flexibility was built into it,” explains C.E.Karunakaran of NNOS. The key, was to ensure transparency from the word go.

Dr. Amalorpavanathan explains, “By then, Tamil Nadu, or Chennai, was already the medical capital, with well-established neurology units, and a 20-year history of kidney transplant. After the post-tsunami sale of organs, there was a groundswell of opinion to stop this kind of commerce. Some IAS officials, notably the Special Secretary (Health) at the time, PWC Davidar, and the then Health Secretary V.K. Subburaj were keen to see a change. Over the years too, we have had tremendous support.”

If you looked at why the Tamil Nadu model worked, the fact that the team sat down to nail the procedure for organ allocation with a series of (eight) government orders stands in relief. “The first task was mandatory brain death declaration — the three tertiary government hospitals in Chennai were the first to take it up,” Mr. Davidar explains. He has since moved out of the health department but continues to be an integral part of the transplant movement. “We wanted it known that we are serious about brain death declaration; that it was legal, scientific and could be done. We were not even interested in asking families of the brain dead to donate organs, at that stage.”

Another factor, at that point, says Dr. Shroff, was the fact that HIV/AIDS which had been at the centre stage of health interventions, had begun to slide out. “In the health NGO circle there used to be a HIV—non-HIV divide for the longest time. Now, with the space being created in that area, health NGOs with other interests caught the attention of the policy makers.” His MOHAN Foundation continues to train large numbers of people as grief counsellors and has evolved a fine data management system for co-ordinating voluminous information on transplants and keeping it secure, but transparent.

“During the process of evolving the system, in order to guarantee success, two or three things were done,” explains Mr. Karunakaran. “The people involved must feel an ownership of the process — hospitals doing transplant were consulted. Secondly, the allocation of organs was made as simple as possible. We decided that whoever is on the waiting list for the longest time would get it — that is the only thing that will work.”

Between October 2008 and September 2015, the state has transplanted 2158 major organs (heart, lungs, kidneys, liver, pancreas, small bowel) and 3870 totally (including heart valves, corneas, skin and blood vessels). Thanks to their fetish for transparency, it is possible at any given time to have an updated position of the number of organs that have been used, all of them furnished on TRANSTAN’s website. There have been 701 donors so far, and this takes Tamil Nadu to an organ donor rate of nearly 2 per million population.

The ultimate proof of the pudding is when more people want a share of it. A number of states are trying to model their own programme based on the Tamil Nadu system. “Tamil Nadu has been nominated the regional transplant authority for the South. While we believe that much more can be done even within the State, the encouragement from the Prime Minister and the response of other states have inspired us to keep up,” says J. Radhakrishnan, Health Secretary. He makes the point that all this may not have been possible without a vibrant and co-operative private health sector and dynamic NGOs willing to invest time and energy, not only in transplants, but in evolving systems.

Krishnamurthy Gade, Chief Transplant Coordinator of Andhra Pradesh has been in close touch with TRANSTAN. “The patronage from the Chief Minister is highly appreciated, it makes a lot of difference. We find that the Tamil Nadu programme is more committed, transparent, accountable, and all states would do well to follow this model.” As they say, imitation is the best form of flattery.

If one were to use the health equivalent for “ease of doing business” in the transplantation sector in Tamil Nadu, one man with a ringside view of the whole scene, Paul Ramesh, heart and lung transplant surgeon at Apollo Hospitals, says things have improved by leaps and bounds. “We have the fairest system for distribution of organs, and we have arrived at it ourselves. Technical support and know how, organ resuscitation (maintaining a brain dead patient), have really improved, and as a result our health outcomes are on a par with the best in the world,” he says.

The role of the grief counsellor, speaking to families of brain dead people urging them to consider organ donation at a time of great trial is crucial. The ultimate act of sacrifice by a family agreeing to donate the organs, remains at the heart of the success of the cadaver transplant programme. If there are no donors, there are no recipients, and there is no programme. It has become much more than signing in a bunch of documents as tears clouded his eyes for Asokan Subramani and his family. When their young son Hitendran was declared brain dead in late 2008, the Asokans’ — both doctors — decided to donate his organs. But they did not stop there. They are among the vocal campaigners for the organ donation movement in the state, encouraging and support other donor families. They are also the tiny drops that make this ocean, the people who make the organ donation movement in Tamil Nadu work as well as it does.

For work well, it certainly does, now.

ramya.kannan@thehindu.co.in

(The article has been edited post-publication)