DOES the kidney trade continue to thrive in Tamil Nadu despite the implementation of the Transplantation of Human Organs Act (THOA), 1994? Has the government taken adequate steps to narrow the gap between the demand and supply of kidneys to help patients with end-stage renal disease (ESRD)? Are the steps initiated by the government to promote cadaver donation yielding results? Is it true that the authorities are trying to find a narrow technical solution to a very complex problem? These and several other questions relating to kidney transplantation have come to the fore again with a resident of Chennai alleging that he sold his kidney to a person who was not related to him. Transplantation of a kidney from an unrelated donor is against the law except when done with an altruistic motive.
M. Sekar, 33, lives in Bharathi Nagar in Villivakkam, which has for long been in the news for kidney trade. The residents here are mostly construction workers, hawkers, vendors or others taking up low-paying jobs and fall in the below poverty line (BPL) category. As pointed out by Dr Sunil Shroff, managing trustee of the Multi Organ Harvesting Aid Network (MOHAN), it seems every other household in the area has a donor.
Sekars case appeared in the local media in the end of December 2008 after a non-governmental organisation (NGO), Manitha Urimai Makkal Iyakkam, brought it to light. A kolamaavu (rangoli powder) vendor, Sekar claimed that a kingpin of the illegal trade contacted him a few months earlier and he agreed to part with his kidney for a price the man quoted. The surgery was done in a hospital in the city in October 2008, and he was given only a part of the promised sum, he alleged. Just as most live unrelated donations of kidneys in the past were for monetary considerations, Sekar also said that he had sold his kidney to save his family from the debt trap. A major portion of the money was used to repay a loan his father had raised in order to marry off his two sisters. Sekar said the middleman had tutored him to tell the Authorisation Committee constituted under the THOA that he was related to the recipient.
T. Santhakumar, president of the Iyakkam, alleged that people who were desperately in need of money in Villivakkam and certain other areas including Ennore and Thiruvottiyur in North Chennai were lured into selling their kidneys. Describing Sekars case as the tip of the iceberg, he said the full magnitude of the issue would come to light only if a thorough investigation was done in the areas. The organisation also called for urgent measures to break the hospital-broker nexus and help the hundreds of poor people who had donated kidneys to unrelated recipients.
Official sources deny the existence of any fresh racket involving illegal kidney transplantations in the State. According to Secretary (Health) V.K. Subburaj and Director of Medical Education Dr S. Vinayagam, investigations following the media reports of the kidney donation by the Villivakkam resident have revealed that the allegation is baseless. Records available with the Authorisation Committee and the hospital where the surgery was performed also showed that the donor was related to the recipient, Subburaj said.
Dr Vinayagam said the committee had interviewed the donor and the entire proceedings had been videographed. There was no need for any suo motu probe into the commercial dealings in organs in the absence of any evidence, Subburaj said. Officials in the government say that kidney trade in the State is a thing of the past. According to them, things began to change significantly after the government took a string of measures to tighten the procedures relating to organ donation.
However, there are some experts who feel that the racket may be operating at the subterranean level though major hospitals are wary of performing illegal transplantations in view of the law. This problem arises out of poverty and it takes place in many Third World countries. Law-breakers breach laws and the THOA is not an exception. It is unfortunate that we are trying to find a narrow technical solution to a very complex sociological problem, said a senior medical expert.
Data provided by the Directorate of Medical Education in Tamil Nadu show that around 75 per cent of the kidneys available for transplants in the State have come from live unrelated donors by reason of affection or attachment towards the recipient, as per Clause 9 of Chapter II of the THOA. About 27 per cent of the recipients have been foreigners. Moreover, the Authorisation Committees have rejected only a microscopic percentage of the applications; of 682 cases that appeared before it during 2007 and 2008, only 18 were rejected. Still, official sources claim that the government has taken vigorous steps to curtail the number of live unrelated donations of kidneys. Highlighting the State governments initiatives, Subburaj said that after illegal kidney transplant cases were reported in 2007, a series of measures were taken to tighten the procedures relating to organ transplantation by issuing seven Government Orders (G.O.s) from January 8 to September 5, 2008. According to him, the government had authorised 58 hospitals in the State to conduct kidney transplantation.
A system is in place to ensure regular monitoring. Approvals are given only for cases with genuine and correct documents. The Authorisation Committees constituted in Chennai, Madurai and Coimbatore meet every Friday to scrutinise the applications and give their approval, he said.
Steps have also been taken to strengthen the office of the Director of Medical and Rural Health Service, who is the appropriate authority to deal with any irregularity. A police team has been placed under his/her control exclusively to help him/her in the investigation process if any case of irregularity is reported. Besides, each Authorisation Committee has a police officer as its member. After taking these steps, we have never come across any case of irregularity, Subburaj said.
However, even while saying that the Villivakkam incident does not indicate a fresh kidney racket in the State, some experts assert that this kind of kidney sale has been going on all the time. It ebbs a little when the government brings in some strict measures as a result of a scam, and when things cool down, it becomes normal again. This is primarily because it is a life-and-death issue for the recipient, and the well-off can afford any amount of money to save their lives. On the other side, the very poor and the deeply indebted are in need of money very badly. This is a strong combination and any kind of regulatory framework gets subverted fairly easily, said C.E. Karunakaran, trustee of the National Network for Organ Sharing (NNOS).
Though the governments initiatives have curbed to some extent the transactions that take place on the basis of the altruistic clause (Clause 9 of Chapter II) of the THOA, the sale of kidneys using the near-relative clause goes on. The hospitals also play ball in this because they need the business, he said. He said the government had the power to take action against erring hospitals or individuals involved in the racket and such action would act as a deterrent. Karunakaran also said that though any regulatory measure could be strictly enforced if there was a will, the rich and the powerful and those with political contacts generally got round these measures.
Will the government come forward to rehabilitate live unrelated donors as most of them belong to the BPL category and suffer from tremendous psychological pressure? Dr Shroff referred to a cross-sectional survey conducted among 305 individuals in Chennai in February 2001; the respondents had sold a kidney each around six years before the survey. The study conducted by four experts, including Madhav Goyal, showed that in India, selling a kidney did not lead to a long-term economic benefit for the donor and sometimes it caused a decline in his/her health.
Subburaj said the government had not thought about rehabilitation so far but could extend financial assistance by dovetailing it with existing programmes. He said the donors were being given medical assistance. As a follow-up, the donors were periodically examined even after the surgery and they would not be left high and dry, he added.
But some experts are sceptical about this. That is unlikely to happen as the rehabilitation of these hapless donors by the government would amount to admitting that the regulation has been subverted, said Karunakaran.
Referring to a consultation on Organ Transplant in Tamil Nadu The Future held by the State Health Department in association with the NNOS in March 2007, Karunakaran expressed the hope that the governments cadaver transplantation programme would get off the ground in the next few months and we can see sustained activity [in this area].
It is estimated that around 50 per cent of the nearly 5,000 kidneys transplanted in a year in the country are donated by genuine live relatives, while the remaining 50 per cent are commercial kidneys. In Tamil Nadu, Karunakaran said, around 1,000 transplants were performed annually.
Government officials and experts admit that in the prevailing situation, there is no quick-fix solution to the problems arising out of the yawning gap between the demand and supply of human organs in general and kidneys in particular, in view of the ever increasing number of ESRD patients. As many as 1.5 lakh people in the country require dialysis or a kidney transplant every year. According to official sources, one in every 1,000 persons suffers from chronic kidney disease.
Against this backdrop, the government, in consultation with experts, has taken a series of steps to encourage and streamline cadaver transplant. One of the reasons for the commercialisation of organ transplants was the lack of coordination with regard to cadaver transplantation. Close on the heels of the launching of the cadaver transplant programme, major hospitals in the State have expressed their willingness to be part of the network, said Dr J. Amalorpavanathan, convener of the Cadaver Transplant Programme. He said the formation of an autonomous organ harvesting and distributing body at the State level was in a nascent stage.
Recalling the role of the MOHAN Foundation in the area, Dr Shroff said that there had been more than 20 cadaver donations in the State in the last three months of 2008 compared with 22 donations in the past three years. He said cadaver donation was catching up with the people after a doctor-couple donated their sons organs last September; the boy was declared brain dead following an accident.
If the prevailing low rate of cadaver donation in the country 0.07 per million population were increased to one per million population, there would be adequate organs available for transplantation and there would be no need for live donations, he said.
Another issue that has been debated is the suggestion of a section of medical personnel and ethicists to declare organ donation by live unrelated donors as regulated sale or rewarded gift. A regulated market will ensure transparency in the commercial dealing, they feel. But Karunakaran said the experience in Iran where the system is in vogue shows that those who have sold their kidneys through an open mechanism feel at the end of the day that they are worse off and they would not recommend anybody else to sell their kidneys.
A discussion on the issue at a meet of experts in Istanbul, Turkey, in the middle of last year concluded that rewarded gifting of organs from live persons should not be allowed. The State government also rejected such an idea because of the THOA and other factors, Karunakaran said.
Experts including Dr Amalorpavanathan and the authorities concerned suggest that the focus should shift to preventive health care as the recipient has to spend Rs.10,000 to Rs.25,000 a month on medicines for the rest of his life to prevent the transplanted organ from getting rejected, and this is not viable for the poor. The solution lies more in preventive nephrology. The two major causes of renal diseases in adults are diabetes and hypertension. This calls for radical alteration of our lifestyle, he said. If you reduce the incidence of these two diseases, the requirement for kidney transplants will come down and the demand can be taken care of by related donors and cadavers.
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