Against the organ trade
http://www.hinduonnet.com/fline/fl1910/19100840.htm
A group of professionals, brought together by a media workshop, pool their insights on human organ donation, examine strategies to end the trade in kidneys, and suggest ways to make the relevant laws more efficient.
PARVATHI MENON
in Bangalore
A GROUP of citizens - doctors, lawyers, journalists, and government representatives - has decided to join forces in a many-sided initiative to halt the commerce in kidneys, which continues to flourish in India in defiance of existing laws and humanitarian values. At a day-long media workshop organised by the BKF-NU Trust and the National Law School of India University (NLSIU) on April 27 in Bangalore on "Human organ donation: medical, legal, social and ethical dimensions", this group of concerned professionals pooled their information and insights on the complex issue of human organ donation and examined strategies to end the inhuman trading in kidneys.
Renal disease is a major, though largely unrecognised, public health issue in India, one that cuts across the regional and socio-economic divide. An estimated one lakh people develop End Stage Renal Disease (ESRD) each year. This is in addition to a pre-existing pool of an estimated 20 lakh persons who suffer from this affliction. A person with ESRD requires renal replacement therapy in the form of either dialysis on a continuing basis or a renal transplant. Both are expensive options that require recurrent expenditure over the person's lifetime. Furthermore, treatment for renal disease is still largely in the private health care sector where the costs are high. A large number of ESRD patients - those from rural areas and small towns where treatment is not available, and those who cannot afford the costs even where treatment is available - thus remain outside the pale of any kind of medical care. There are no accurate figures for the number of kidney transplants done in India, as there is no national registry for organ transplants in place, a practice that is mandatory in most Western countries where transplant procedures are performed routinely. Thus estimates of the number of ESRD patients against the actual number of transplants performed are guesstimates at best. According to these guesstimates, fewer than 5 per cent of the ESRD patients in India actually receive some form of renal replacement therapy, and of these an even fewer number have renal transplants. It is estimated, or rather guesstimated, that fewer than 3,000 transplants are performed in the country each year. This represents a fraction of the total number of patients who require transplants.
K. GOPINATHAN
With the demand for kidneys being met by poor donors who are desperate enough to sell parts of their bodies in order to escape indebtedness and hardship, the Government of India, in keeping with international covenants and progressive legislation in place in other societies, banned the practice of organ trade. The Transplantation of Human Organs Act, 1994, was enacted to stop the trade and clear the legal decks to enable a cadaver-based human organ donation programme to be put in place. Seven years later, there is ample evidence in the public domain that the law has singularly failed in stopping the trade.
The workshop was able to draw together the many threads of the issue of human organ donation and its dominant feature, namely the trade in kidneys. Besides being illegal and violative of basic human rights, the trade in kidneys impedes the growth of a programme of cadaver organ donations, which is a humane and necessary alternative that could meet a good part of the burgeoning demand for kidneys. Less recognised and acknowledged is the negative impact that the trade has had on public policies in healthcare. The dimensions of renal disease in the general population make it a major public health issue that should become part of a government-subsidised public health care programme. Yet the constant supply of kidneys to patients of ESRD from poor donors has resulted in transplants and dialysis remaining within the expensive and exclusive ambit of private health care. The trade has muddied the real picture, thus taking the onus of addressing this public health issue off the government health care sector.
The primary purpose of the workshop, which was attended by around 35 media professionals drawn from different media streams and from all over Karnataka, was: to strengthen the important role of the media in investigating the many dimensions of the trade; to create public awareness; to clear popular misconceptions on renal disease and the medical options available for treating it; and to promote viable and humane alternatives to a paid donor programme. In addition to media professionals, the workshop was attended by journalism educators and students, lawyers and students from the National Law School, and a core group of renal transplant surgeons and nephrologists committed to clearing this vital area of medicine of illegal and unethical practices. The workshop was inaugurated by B.K. Chandrashekhar, Karnataka Minister of State for Information Technology. Dr. H. Sudarshan, the highly regarded Chairman of the Task Force on Health and Family Welfare, Dr. Venkatesh Krishnamoorthy, Medical Director - BKF-NU Trust, Mohan Gopal, Director of the NLSIU, and N. Ram, Editor, Frontline, also addressed the inaugural session.
THE centrepiece of the day-long workshop was the presentation of the facts about the organ trade in Karnataka by Dr. H. Sudarshan, who gave a clear picture of the dimension of the trade in Karnataka and discussed the failure of the State government to confront and stop the trade. According to Dr. Sudarshan, out of the 1,000-odd cases of unrelated transplants that were put up for approval before the State Authorisation Committee between 1995 and March 2002, only 22 were rejected. This, he argued, indicated gross misuse of Article 9(3) of the Transplantation of Human Organs Act, 1994, which permitted a person to donate his or her kidney out of love or emotional attachment to the recipient. He said that in almost all cases of unrelated transplants that had taken place in Karnataka, it was reasonable to assume that money had changed hands. The uncovering of a major racket in kidneys by the Mandya police, in which a network of agents was involved in sourcing the kidneys of the poor to patients in certain Bangalore hospitals, is a clear pointer to this.
Dr. Sudarshan's statistical analysis of data from the Authorisation Committee's files shows that a majority of donors in Karnataka were in positions of socio-economic dependence on the recipients. The majority of them were employed as casual labourers in different segments of the unorganised sector. Most of the donors, according to Dr. Sudarshan's data, were in the 20 to 30 year age group, and transplants largely took place from male donors to male recipients, although women also constituted a significant segment of the donors. Both the donors and the recipients came largely from within Karnataka, although there were a significant number of patients coming to Bangalore from other States as well.
A GOOD part of the workshop revolved around the infirmities of the present Act, especially Section 9(3), the clause that defeats its very purpose. There was unanimity amongst participants on the need either to scrap the clause or to seek ways in which its misuse can be prevented. Chandrashekhar made several suggestions in respect of the law and its implementation. He suggested amendments to the Act to restrict the scope of 9(3). He also stressed the need to define the legal scope of the Authorisation Committee under the Act. He suggested that an independent body of experts of unimpeachable integrity, set up by the government, could review once in three months the cases approved by the Authorisation Committee. He offered the full cooperation of the State government in any effort to strengthen the law and improve the functioning of the bodies appointed under the Act.
There was unanimity amongst the workshop participants on the need to stop the organ trade, described fittingly by Mohan Gopal, Director of the NLSIU, as a practice that "cannibalised" the poor. He said that the goals of a viable transplant programme in the country were incompatible, whether on medical or ethical grounds, with those of a paid donor programme. N. Ram drew pointed attention to the Iran experience, where paid organ donation has been legalised and 'regulated' under the law. A survey done on Iranian organ donors (see Frontline April 12, 2002) revealed that these kidney donors had lost their jobs, earnings, health and self-esteem following the transplants. The majority of those interviewed regretted the act of paid donation.
The faculty and students of the NLSIU, drawn from the Institute of Law and Ethics in Medicine, presented an analysis of the Act and its many shortcomings. Apart from the obvious legal giveaway represented by Section 9(3), the Act has several other weaknesses. Organ commerce, made illegal by the Act, is still a non-cognisable offence under it. The inclusion of "spouse" under the category of "near relatives" as defined under the Act could give rise to the sort of misuse the Act seeks to check. The wide discretion provided to the Authorisation Committee is also subjected to misuse. A suggestion made by several doctors was to stop the practice of personal interviews by the Authorisation Committee as the sight of patients put enormous pressure on them to clear the applications. They said that the Committee instead should take a decision based on the documentation that the two parties submitted.
Several other aspects of organ donation were discussed in the workshop. These included the need to create public awareness on the importance of building a cadaver-based organ donation programme, for which the media can play a central role; the role of professionals such as doctors and lawyers in presenting accurate information on treatment and its costs; and the need to involve non-governmental organisations to act as watchdogs in the implementation of the Act.
Looming large on the organ donation scene is the organ trade, an unconscionable and unethical practice that needs to be stamped out. There is ample evidence on the mechanics of this trade; its existence has been acknowledged by the National Human Rights Commission, which on the basis of a recent report in The Hindu has issued a show-cause notice to the Government of Karnataka, the Union Health Ministry and the Medical Council of India asking them to show what action they have taken to stop the trade.
The workshop participants agreed that the time was ripe to initiate a public interest litigation (PIL) in the Karnataka High Court seeking amendments in the law, while also asking for an interim direction to the State government asking it to implement the Act firmly. On the recommendation of Mohan Gopal, the workshop decided to set up an inter-disciplinary working group, which would work on the details of the PIL. The group will try to isolate the weak points of the Act and seek amendments to it, while trying to develop and provide an alternative legal framework.
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