Towards achieving national self-sufficiency in organ donation in India - a call to action
By Dr Vivekanand Jha
Organ donation is a miracle of modern medicine, made possible on the back of that act of supreme human charity – willingness to donate an organ – either of oneself, or that of a loved one (in the case of deceased donors) even in the face of tragedy.
All transplant professionals and patients with end-stage organ failure are painfully aware that availability of organs is a major limitation in current day practice of transplantation. This shortage has led to suggestions of ways of overcoming this barrier: use of organs from donors after cardiac death, marginal donors, swap and domino transplants, etc. All of these have met with broad approval and are increasingly in practice - albeit with varying success – in different parts of the world.
The one suggested solution that has created deep divisions among transplant professionals, ethicists, social scientists, law-makers and even the general public, is the suggestion of incentivizing organ donation. Altruism, consistent with respect for fundamental human rights - in particular that of human dignity - has been the bedrock of organ donation, and the overwhelming consensus so far has been that any kind of payment or reward for organ donation is contrary to the human values, and hence banned throughout the world – with the notable exception of Iran.
Professional societies, transnational organizations such as the World Health Organization (WHO) and other global groups have strongly opposed incentives for organ donation, at the same time supporting removal of any disincentive such as loss of wages, medical bills, medical insurance, travel expenses etc., related to the act of donation. These voices include WHO Guiding Principles and the Declaration of Istanbul, which provide guidance on how to remove such disincentives. The Indian Society of Nephrology and the Indian Society of Organ Transplantation have endorsed the Declaration of Istanbul, and many countries have enacted laws in accordance with these principles.
India came to limelight in the late 1980s as the preferred destination for rich foreigners in search of organs for a price. This was subsequently termed “transplant tourism.” The details are well documented and need not be repeated here. What is of concern that such reports continue to appear – at least in the lay press – in India even today. Police action, arrests, prosecution and even conviction of the accused have been reported. The amendments to the Transplantation of Human Organs Act (THOA) have made the penal provision for violations even stricter. Despite these, the law continues to be violated.
Almost every transplant professional knows that commercial transplants continue – albeit the volume is nowhere close to that in the 1990s. Patients suddenly disappear from dialysis units and surface after some time, with a mask covering the face, a sign of having got a kidney transplant. Details are hard to come by, but an ongoing activity is suspected. This phenomenon - that only a small portion of illegal activity is visible - has been called “the dark figure of crime” or “the iceberg of crime”. Practitioners of this trade (patients, middlemen, healthcare professionals, administrators) play hide and seek with law enforcement – patients travelling across state borders to seek donors, travelling with paid donors to other states and even overseas, surgeons flying out to other hospitals – innovation knows no bounds.
One can argue that a section of professionals do not agree to the altruism principle behind organ donation and, therefore, do not believe payment should be prohibited. They are well within their right to hold such beliefs – and join in the often lively debate on the topic.
However, the fact is that making, receiving and facilitating payment of any sort for organ donation is illegal in India. Therefore, no matter how strongly held, such beliefs cannot be translated into practice.
The obvious solution for this is to improve our deceased donation transplant program. Despite the setting up of the National Organ and Tissue Transplant Organization and the announcement of the National Organ Transplant Policy and framework, deceased donor program remains stillborn in most parts of India. The Union Minister for Health and Family welfare also agreed recently that the organization has failed to make an impact.
Notable exceptions have been the state of Tamil Nadu, Gujarat and Chandigarh. The Tamil Nadu Deceased Donor Donation program and the Tamil Nadu Network for Organ Sharing have adopted forward looking policies. There is a declared organ allocation policy, state - wide organ sharing system, and a common wait list. Organ donation data is available on the website. All this has been largely made possible by a dedicated team. The deceased organ retrieval rate in Tamil Nadu is 1.3/million population (pmp), about 10 times more than the rest of the country. Data from the small Union territory of Chandigarh shows an even greater retrieval rate of 9.5 pmp. These examples show that given the will, it is indeed possible to improve performance.
A perusal of Tamil Nadu data shows that whereas 100% of the 603 kidneys and the 268 livers retrieved from deceased donors went to Indian citizens, only about 75% of the 34 hearts were transplanted into Indian Nationals, with the rest going to foreigners. It must be clarified here that this was with full adherence to the organ allocation policy which says that the resident of the state has the first claim over any available organ, followed by Indian citizens from other state, and only if there is no suitable recipient on the wait list would the organ go to a foreign citizen (rather than being discarded, the only available – but much less attractive - alternative).
Reassuringly, the existing rules and laws governing organ transplantation in India are pretty good and prescribe a solution for most of the issues raised above. What we need is transparency, use of information technology and better enforcement of existing rules.
The existing rule of the requirement of a full time transplant co-ordinator (not assigning it to someone on a part time basis), institution of required request for organ donation and brain death audit in Intensive Care Units – all part of the THOA, should be implemented immediately and it should be the duty of all hospitals to display this information on their websites.
All hospitals that have an active living donor transplant program should be required to adhere to certain performance measures regarding deceased donation.
In their anxiety to appearing to comply with THOA, some states have gone overboard. They require even legitimate donor – recipient pairs (first-degree relatives) to be cleared by the Authorization Committee. This unnecessary step harasses patients, giving them the run around, delays transplant, increasing the expenditure and sometimes leading to recipient deaths. Moreover, it increases the work of the Authorization Committees that should be concentrating on the cases that need proper scrutiny rather than wasting time on those where the legal requirements can be satisfied by other methods prescribed in rules (e.g. genetic testing). Clearly, this anomaly needs to be corrected.
Professional Societies and non-government organizations active in the field have an important role in driving the policy agenda that helps development of ethical and equitable transplant program in the country. The Indian Society of Nephrology, the Indian Society of Organ Transplantation, and the MOHAN Foundation (the leading NGO in promoting deceased donation and training Transplant Co-ordinators in India) - along with the Transplantation Society and representation of the WHO, conducted a workshop in February 2013 that led to generation of a consensus document, which provides a roadmap for implanting a deceased organ donation framework. This document has been shared with the government authorities, but is yet to be implemented.