Back in 2004, in an editorial for the Indian Journal of Medical Ethics on a kidney transplant racket, I began by saying, “In our scandal-prone Indian public life, one scandal distinguishes itself by the amazing regularity with which it hits the headlines every few years. The only variation is its shift from one city to another as if in planned rotation. Thanks to the desperation, ingenuity and collusion of the players involved, the Indian kidney bazaar, as it was crudely described at some stage in its history, refuses to die down.”
I ended the piece by offering a rather polemical solution: “The battle against this practice must be fought at two levels. The first is in the realm of the law and monitoring agencies. The second is an ideological battle against what is essentially a violation of human rights and a form of social exploitation of the worst kind. Otherwise, we will suffer the same cycle of rackets being exposed periodically.”
That statement, though not meant to be a prediction, has unfortunately turned out to be true. The latest act in this sordid saga is the one currently playing out in a Mumbai hospital. While the Human Organ Transplant Act of 1994 partly succeeded in curbing the then blatant kidney bazaar that thrived in the 70s and 80s, periodic exposés since then show that it continues in a more discreet fashion. The 2011 amendment to the Act actually increases the quantum of punishment to those involved in commercial trading of organs. And there is a whole system of checks and balances in place that is supposed to curb any form of trading. A number of people have been arrested under the act but the sale of organs continues.
Why then does this racket refuse to die down? And can we curb this activity at all?
Older people, better medicine
The demography of disease in India is rapidly changing. There is a huge increase in the number of those suffering from end stage disease of various organs. An aging population coupled with an increase in the incidence of diseases like diabetes, obesity and hypertension contribute to a large patient number with chronic end-stage organ damage. As curative modern medicine expands its horizons, there is also the inevitable improved disease detection.
Whilst this should result in improved and effective prevention, strangely it also increases the number of individuals who qualify for transplantation. Likewise, with visible success of transplantation in saving lives and restoring quality of life there is increasing demand for this intervention. Thus patients with renal failure now aspire for a kidney transplant and rightly so, as the quality of life is vastly superior to dialysis. Liver transplantation is also now a viable option for those with liver failure although the numbers are much smaller than those of kidney transplantations. The phenomenal success of transplantation in turn increases the requirement for organs.
Finally, with the enormous increase in the scale and reach of the private sector for whom transplantation is a lucrative proposition, access to transplantation has also increased for those who can afford it. Thus the overall the need and demand for organs for transplantation in India has increased exponentially and will continue to grow by leaps and bounds.
Finding transplant organs
The next logical question therefore is where do the organs come from?
Organs for transplantation come from two sources. The first and still the most prevalent in India is live donors, often close relatives or occasionally distant relatives. It is estimated that only one in four recipients will have a matching close relative for donation. There are no easy ways in which this source can be increased . One recent innovation called ‘swap’ in which a patient whose close family members organs don’t match can exchange organs with another pair of donor and recipients has some potential in increasing the live donor pool. The other way is to provide some form of legal sanction for unrelated donors. That’s an issue we shall return to.
The other source, which is the commonest way in which organs are obtained in the developed world, is deceased donation wherein organs are removed after declaration of brain stem death with consent from the family. Although the law legalizing brain death was passed in India way back in 1994 progress has been rather slow. Though a few states have recently seen growth in deceased donation rates, this is still well below the requirement. Even in countries where deceased donation has a very long history and where it has been effectively integrated into the health care system the gap between demand and supply continues to be substantial.
As a result some countries have begun to adopt other novel tactics to improve deceased donor organ availability. This includes donation after cardiac death wherein organs are removed as soon as the heart stops – what maybe termed classical cardiac death. This is a logistically challenging proposition as the organ preservation technique involves a surgical team perfusing the body with a preservative solution needs instantaneously after death. Such donations can thus take place only in hospitals with immediate access to an operation theater.
The other idea implemented only in a few countries is to drive donation rates by adopting a policy of presumed consent in which an individual is presumed to have agreed to donate organs after brain stem death if they have not expressed a wish against it. The wishes of relatives are therefore made redundant. Such policies are huge leaps of social imagination and need informed public discourse as well as a transparent and organized health care system to implement. Most countries have stayed away from this and prefer instead to counsel family members and obtain their consent. Consent rates vary but never cross 50% to 60%. The problem though in India though is not so much lack of consent but the inability of the healthcare system to identify brain death and approach the family in a systematic and sensitive manner.
Incentives for legal organ donation
There have been several suggestions to provide non-monetary incentives to donor families but none have been implemented. All that donor families get is a symbolic ceremonial ‘thank you’ during organ donation functions. For that matter we have the experience in Mumbai of families coming forward to donate organs without even doctors approaching them but eventually cannot because of a weird law which requires that the hospital in which the donors body is be recognized for donation.
Finally, in a bizarre interpretation of the law recognising brain death, whilst the ventilator is shut off after organs are removed for donation after family consent, in case the family refuses consent the ventilation continues with the family spending thousands of rupees by the hour in private ICUs. In short whilst there is symbolic support to organ donation there is very little facilitation at the ground level affecting donation rates.
It seems therefore that at least for the near future the majority of Indians suffering from end stage organ failure will have to rely on live donation to survive. Current laws allow close relatives of a patient to donate their organs once the relationship has been proved. This permission is granted by local hospital-based committees who are mandated to have an external representative. In case the donor is a distant relative (beyond spouse, mother, father, brother, sister, son, daughter, grandparents and grandchildren) or anyone else who is donating for ‘altruistic’ reasons, the donor and recipient have to establish that there is no commercial dealing behind the donation by appearing in front of a committee setup by the states Director of Health Services who is the authority for monitoring transplantation. So theoretically the law actually allows ‘unrelated’ donation where there is no monetary transaction.
Detecting forced donations
In all this, it is important to recognize that the surgical procedure for the donor is quite formidable with potential for complications including the rare chance of death. Also that irrespective of the relationship, the medical team has to do a thorough interaction with the donor for physical and mental fitness to undergo the donation surgery. Whether a donor lured into donating purely by offer of money and posing as a relative can hoodwink the otherwise sharp minds of a medical team is a moot question.
A simple yet effective way of detecting a donor who is being forced to donate under duress (including close relatives) is for a member of the medical team to have a closed door one to one with the donor and offer the donor a ‘medical’ reason to opt out. This extraordinary fabrication, which has been ethically acceptable, is to ensure that the family does not harass the potential donor in case he or she doesn’t want to donate. An individual called a ‘donor advocate’ is another idea that has been implemented in some countries who protects the interests of the donor at every stage. Clearly these are actions by the transplantation community based on experience to ensure complete autonomy for the donor.
One unchanging reality of modern organ transplantation is that in spite of multiple medical and social strategies, demand hugely outstrips supply. As a result in the context of deceased donation where the organ is donated into a societal pool there is intense debate about who should get the organ first. Most countries have organ allocation systems that are based on disease severity consistent with principles of justice. Almost all of them offer transplantation as a part of a universal health care system. Currently in India though organized allocation systems are in place most deceased donor organs go to the rich as transplantation is essentially a private sector activity with very high costs. Thus the poor are also implored to donate but will not get organs when they need them. That, by itself, is a scandal but of course is not perceived as one.
A regulated organ market?
Given the shortage of organs, there is an interesting argument that lurks in the discourse on the social ethics of related donation. This line of thinking proposes that since distress sale of organs is inevitable in low-income countries but patently unjust to the poor donors why not create a regulated market with oversight from the state? This way society can ensure that the donor’s interests are safeguarded and the donor is adequately compensated. And in the bargain some individuals – those who can pay the going price – can get a transplant in a transparent manner and a few poor people who are willing to go under the knife can be handsomely rewarded. Iran is one country which has experimented with this regulated market wherein unrelated donors were paid fixed sums of money by the state to donate.
The social fallout of such a policy against the backdrop of the severe fault lines of inequity in the Indian scenario is indeed challenging. Who decides the price of the organ? Will it be the donor ? If so can the organs be auctioned? And will it then go to the highest bidder? And if those with resources know that there is a paid donor available will they ever motivate family members to be donors? These are just few of the immediate questions that are thrown up in the face of what is seems like almost a dystopian vision.
On the other hand when faced with a wretched life or imminent death with organ failure what would we expect the suffering to do? The poor probably accept their fate early on and die but the middle class and the rich try to get an organ in some way. And when all other options are exhausted, there is the temptation of buying an organ by beating the system. After all, their lived life in India has shown them that by paying the right price, such transactions work in their favour.
Who is to blame?
So who should we hold accountable for these distressing rackets? Is it the sick individual dying of organ failure, aware that transplantation can save him or her who using monetary advantage decides to buy an organ? Or is it the poor woman who approached by a tout and offered a sum of money gets tempted to grab the opportunity to pay off a debt or escape, albeit transiently, from grinding poverty? Or the tout who knowing that there are willing individuals in the system uses the desperation of both individuals and arranges the payoff and fake papers? Or the hospitals and medical teams who are part of an ecosystem whose focus is on numbers and profits and are therefore permissive to such practices? And what about the state, which by failing to nurture tertiary care public medicine, has largely vacated space to the market ethos of the private sector in critical areas like transplantation? And the people of this nation who easily blinded by jingoistic and identity politics have unlike many countries failed to push accessible and quality healthcare on the sociopolitical agenda?
And when we read our daily newspaper with smug satisfaction that Brijkishore Jaiswal, a man very sick from kidney failure, and Shobha Thakur, a poor mother of five daughters and wife of a jobless alcoholic husband, have been locked up in a Mumbai jail, we are all essentially feeding into a unkind delusion that this will curb organ sales. Both Jaiswal and Thakur are paying, in a sense, for the crime of attempting to better their wretched lives. We may do well to remember that by some quirk of fate some day we may all be donors or recipients.