Dr.Sunil Shroff

Managing Trustee, MOHAN Foundation , Chennai & Hyderabad
Prof & Head of the Department of Urology & Renal Transplantation
Sri Ramachandra Medical College & Research Institute,
Porur, Chennai 600 116, India
Telephone: 91 44 24761546
Fax: 91 44 26263477
Email :[email protected]


Introduction

Organ transplantation is one of the most incredible discoveries of the 20^th Century. It is so amazing that it was among the top five greatest medical miracles. Its importance is known to be generally overlooked, but in reality its ability to give someone a second chance in life is truly overwhelming. For organ transplantation to be complete, a system should be set forth which involves an organ recipient registry, which keeps track of patients who requires vital organs. This list should address due ethical concerns and for fair distribution of organs available. To really understand what you have just read, you must first look into what organ transplantation is about and how demand for organs have created market forces and brought in commerce in a field, that has always been at the cutting edge of medicine.

Organ transplantation is the removing of an organ from one donor site to another person requiring the organ. .The people who donate the organs are known as organ donors, while those to receive them are known as recipients. An organ donor can be of mainly two types, living or deceased (Cadaveric). Cadaveric donors are those that have been declared to be brain dead by a specialist such as an intensivist or a neurologist as a result of an irreversible ischemia to the brain. Some of the vital organs are kept functioning in a brain dead patient as the heart continues to beat and the lungs are artificially kept working by use of machines called ventilators.

The Issues and ethics in Organ donation come up mainly when considering living donors. Selling of organs for monetary benefits or against the will of donors is now becoming a common issue. Imagine prisoners who are forced to donate most of their organs since they are on line to be executed. In the year of 2002, China performed up to 5000 Kidney transplants, and the Chinese deputy minister of health admitted that approximately 95% of all transplanted organs were from these very same executed prisoners. They further justify the action with the demand for more organs then that which is available.

Besides these records, trade of organs has become a very common practice. As many developed countries have come up with a queuing or waiting list system, many decide to procure organs from the black market. This is generally for Kidneys, as each human has two of them, and is known to survive without another. To stop this trade most countries have made the trade of organs illegal, all except Iran where the government officiates between the donor and recipient. India too has its own programme and since it passed the legislation - Transplantation of Human Organs Act (THO) it has made commerce in organ illegal. The legislation that was passed in 1994 also recognized brain death as a form of death thus allowing critical organs such as heart, lungs, liver, kidneys, pancreas and many others to be procured for transplantation. One such brain dead or deceased donor is able to donate all the important organs besides many tissues. There are instances where one organ donor has benefitted more than 25 individuals. Most of the deceased donors (almost 50%) are due to fatal head injury in road traffic accidents, other reasons include spontaneous hemorrhage into the brain due to bursting of an artery or due to tumour in the brain. Tamil Nadu in India was the first state to start a cadaver transplantation programme and to start a full-fledged living kidney transplant programme.

The Known Indian Scenario

It should be understood that Organ Donation is pragmatically a numbers game. In 1998, India had 1% of the world's road vehicles, and also 6% of the world's road accident (1).  These accidents have not reduced but in fact have risen to 10% [Daily telegraph 2006]. The BBC reported that 1 person dies in India every 6 minutes due to a road accident. This brings the total of road accidents in India to roughly 90,000 per annum. Tamil Nadu itself reported 13,000 fatal deaths due to road accidents in 2005 [Including fatal as well as grievous accidents] (2).  As mentioned earlier that nearly 40-50% of all fatal road accidents in the world lead to brain death. This means that there are approximately 35,000 potential organ donors in India from road traffic accidents itself. But in India approximately 4000 transplants that take place in a year get organs from living donors and not cadaver donors. Even if only 5% of all these deceased patients went on to donate their organs it would mean there would be statistically no requirement for living donors.   These figures above are for road accidents alone which accounts for a majority of brain-death figures in the world. Besides road traffic accidents the other causes of brain death account for the other 50% of potential organ donors.

There are currently, over 120 transplant centres in India doing approximately 3,500 kidney transplants. Out of these transplant centres, four centres are known to undertake approximately 100 liver transplants annually while some of these centres also do an occasional heart transplant. About 50 liver transplants are done from deceased or cadaver donors and the rest are from living donors. In India only 100 heart transplants (First in India was in 1994) have been done and all the donors in this situation have been from deceased donors. Unlike kidney, liver, lung and pancreas transplants, it is not possible for a living person to donate a heart as this is a single organ. Organs for most of the kidney transplants are known to come from living donors out of which 50 to 60% of the donation are due to emotional affection or attachment.   

There is no organ cost in a deceased donor except for cost of perfusion fluids and intensive care costs in maintaining the donor. In living donation, where a first relative donates, the motive of donation is usually purely altruistic, however, if someone other than the first relative donates, the motive for donation may not be altruism and in most instances driven by monetary considerations. These donations have to be cleared by a government authorisation committee to ensure that there is no commercial dealing in the donation process. While the donor swears that their donation motive is purely an emotional affection, what happens behind the scenes is anybody's guess(3). Most of the expose by the media about the flourishing organ commodification in India happens when a donor does not get the promised sum from either the broker or the recipient.

But some still consider this a small and trivial crime. Especially if you consider the number of patients reaching end stage kidney failure who require transplants, which is approximately 150,000 in India alone. This number has been on the rise with the incidence of diabetes and hypertension rising rapidly, similar is the case with liver and heart transplants.

Majority of the patients cannot afford a transplant surgery due to financial constraints and there being a lack of a national health insurance scheme. As far as the kidneys are concerned it is estimated that if more organs were available, the various transplant  programmes would be able to do a minimum of 5000 to 6000 transplants and could lead to some reduction in the overall cost of the surgery. The early success of some of the liver transplants programmes is likely to bring up more centres and these numbers are likely to rise. At present the liver transplant surgery is the most demanding and most expensive and the average cost of the surgery varies from Rs.1.5 to 2.5 million. In comparison a kidney transplants costs Rs.200,000 to 500,000, a heart transplant costs Rs.500,000 to 700,000.

The Real Indian Scenario

Ever since the Indian transplant programme acquired the skill in 1980s there has been exploitation of the donors from the lower income groups. The usual scenario driving these poverty stricken people is desperation for monetary payments. Some are under pressure from loan sharks and others to pay off for some major family costs (eg. Marriage). In many instances once they have donated, these exploited individuals themselves act as middlemen to drive others in their community to kidney donation. Many transplant centres in the country receive letters or have people who walk into their clinics declaring that they wish to donate kidney for money.   

Like child labour and prostitution, the ethics of organ donations is much more complex in our country and these are part of the corrupt fabric of our society. The country provides many hamlets of poverty that are fertile area for any kind of exploitation. Organ commodification is, however, a more serious exploitation as there can be endangerment to health especially in case of living liver donation. There have been at least two deaths of healthy young donors in the Liver programme and many donors have had long-term complications related to the donation process. The surgery for living kidney donation is safe with minimum morbidity with no long-term problems, however, it has been found in some studies that when the motive of donation has been purely commercial, donors in the postoperative recovery period have been more prone to ill-health. In comparison where the donation motive is purely altruism; there was more positivity in the process and recovery has been much better.

In an interesting field study published in the Journal of American Medical Association on Economic and Health Consequences of Selling a Kidney in India, - it was found that ninety-six percent of participants (over 300) sold their kidneys to pay off debts. The average amount received was $1070. Most of the money received was spent on debts, food, and clothing. Average family income declined by one third after removal of the kidney  (P<.001), and the number of participants living below the poverty line increased. Three fourths of participants were still in debt at the time of the survey. About 86% of participants reported a deterioration in their health status after nephrectomy. Seventy-nine percent would not recommend that others sell a kidney. Hence selling a kidney provides for no long term solutions and the article concludes that among the paid donors in India, selling a kidney does not lead to a long-term economic benefit and may be associated with a decline in health (4). The authors of the article Goyal et al conclude:  In developing countries like India, potential donors need to be protected from being exploited. At a minimum, this might involve educating them about the likely outcomes of selling a kidney. Lawrence Cohen, an anthropologist from Berkely who spent considerable time with the paid organ donors in India; in his interviews with a similar group of patients found almost identical results. In addition, most of the donors were women, all were as deeply in debt as before, most of the money was squandered by their husbands in gambling and debts and the promise of a better future was never realised. In his  research, Cohen documented many instances of the one-way trade in the so-called "kidney belt region" of southern India, where he investigated the trade route from organ sellers - usually poor rural women - to hospitals and recipients, often wealthy people from Sri Lanka and Bangladesh, or from the Gulf states. Cohen found that poor people sold their kidneys to get out of debt or to support their families; yet most of these families were back in debt very shortly, minus their kidneys. "Most sellers would say, 'I'd do it again. I have a family to support. What choice did I have?'" said Cohen. He further states: "In some neighborhoods, the structure of debt appeared to rest on kidney selling, since lenders would advance money knowing the organs were collateral. But I argue that the money from kidneys didn't really get these families out of debt. Moreover, there was no follow-up care after the operation, nor efforts to prevent infection in the donor"(5).

In an editorial in the New England Journal of Medicine, Francis Delmonico of the Massachussetts General Hospital states, The fundamental truths of our society, of life and liberty, are values that should not have a monetary price. These values are degraded when a poor person feels compelled to risk death for the sole purpose of obtaining monetary payment for a body part. Physicians, whose primary responsibility is to provide care, should not support this practice. Furthermore, our society places limits on individual autonomy when it comes to protection from harm. We do not endorse as public policy the sale of the human body through prostitution of any sort, despite the purported  benefits of such a sale for both the buyer and the seller(6).  The Frontline magazine from south India did a thorough investigation on these issues and claims a kidney sold for little over 25,000 rupees in 1997, about $US540. Prior to the 1994 law, the traditional destination of Indian organs was the wealthy Gulf states.

Recently there is a move by some physicians and policy makers in India to look at the possibility of making kidney sale a legal transaction by setting up some mechanism to protect them from the middle man or the brokers. These policy-makers should really re-examine the value of using financial incentives to increase the supply of organs for transplantation. Financial incentives for organ donation is likely to only lead to more exploitation. Without a quick cure for poverty, the transplant brokers will thrive and continue to operate and organs will continue to be bought from the poor and sold to the rich.

 The only way out of this quagmire is  to work towards a viable cadaver donation programme. Our challenge is to meet the demand of organs through an ethically driven programme that can increase the numbers of organs without exploitation of the poverty-stricken and gullible donors. When the Government of India passed the THO act, it was expected that the large pool of brain dead patients in the country would be available to take care of the demand of organs and there would be no necessity to depend on the unrelated commercial donor pool. However the Sub Clause (3), Clause 9 of Chapter II in the THO act that gives room for unrelated transplant activity has allowed commercial dealing in organs especially kidneys and to some extent has been the reason why the cadaver donation programme remains stunted and has never gained any momentum in the last twelve years as was expected. The clause reads as follows: "If any donor authorizes the removal of any of his human organs before his death under sub-section (1) of section 3 for transplantation into the body of such recipient, not being a near relative as is specified by the donor, by reason of affection or attachment towards the recipient or for any other special reasons, such human organ shall not be removed and transplanted without the prior approval of the Authorization Committee."

It must also be noted that 1% of hospital deaths in the country are due to brain death and these cadavers are potentially available for organ donation before their ventilators are switched off and their monitoring and support medication is turned off. The challenge is to be able to work towards a process through which some of these brain dead patients can become actual donors so that we are less dependent on living donors. Promoting the cadaver programme would also help liver, heart and lung transplants to grow in the country and logically this is the only way forward for the transplant programme in India.

As Cantarovitch has suggested that organ transplantation depends on a social contract and social trust and it requires national and international laws protecting the rights of both organ donors and organ recipients(7). Fundamentally the practice of organ transplantation requires a reasonably fair and equitable health care system, in India where the private health care system dominates this field. The laws should be punitive at the same time facilitative to promote the programme. 

There have been pockets of success with the cadaver programme and organ sharing among various hospitals. Five hospitals in Tamil Nadu came together in the year 2000 to form the Initiative to Network for Organ Sharing (INOS) under MOHAN Foundation. The hospitals included Apollo Hospitals, Sri Ramachandra Hospital,  Sundaram Medical Foundation, Madras Medical Mission  all from Chennai and Christian Medical College from Vellore. A simple draft document was signed agreeing to the principles of sharing of cadaver organs by all the member hospitals. The group has since then met almost every month to help with streamlining of the cadaver organ donation and transplant process and to plan a future course of action. The group works out strategies on how to improve organ donation rates and transplant outcomes and over the years has accumulated considerable amount of expertise on a workable Indian cadaver model for the country. In Tamil Nadu, over 700 organs have been shared in the last seven years between these hospitals. In March 2003 on the request of a few social activists and doctors, it started an INOS unit of MOHAN Foundation in Hyderabad. Hospitals that have benefited from the cadaver donation programme in Hyderabad are Nizam Institute of Medical Science, Global Hospital, LV Prasad Institute of Medical Sciences, Medwin Hospital, Kamineni Hospital, Apollo Hospitals, Care Hospital, Mediciti Hospital, and Care Banjara Hospital. So far 170 organs have been shared. In the year 2007 alone 14 cadaver organ donations have taken place. Almost 60 organs have been transplanted to patients in urgent need of an organ: 26 kidneys, 9 livers, 3 hearts and 20 eyes. Gujarat in the past has had considerable success with the eye donation programme due to the large population of the Jain community in the state. This community considers eye donation as a sublime form of charity and stress  a powerful link between daan (charity) and moksha(salvation). More recently there has been a spurt of cadaver kidney donation in the state. If properly organized the cadaver programme has the potential to take care of the majority of the demands of kidneys, liver and heart of that state.