A Frontline investigation turns up explosive data that reveal the scale and dynamics of Karnataka's illegal kidney trade. Exploiting poverty and deprivation, a sophisticated network that draws a clientele from near and far has emerged. Precious little has been done to thwart it.
VIJAYKUMAR, aged 47, from Jalahalli in Bangalore was suffering from irreversible kidney failure; in medical parlance, he had End Stage Renal Disease (ESRD). In July 1998 he received a kidney from 33-year-old Shan Basha from Sahidapet in Vellore, Tamil Nadu. Shan Basha claimed that he was donating his kidney out of 'compassion' for the recipient. Vijaykumar is one of 1,012 patients in Karnataka who, between January 1996 and March 2002, were officially cleared to receive kidneys from unrelated live 'donors'. The approval for all these donations came from the Karnataka Authorisation Committee, a body set up under the Transplantation of Human Organs Act, 1994 to ensure that no buying and selling of human organs takes place.
Thanks to a recent police investigation that blew open the lid on a thriving trade in kidneys, hard evidence of a type not previously available for any State is now at hand. It consists of particulars of the recipients, donors, motives (claimed for the donation), hospitals and doctors involved in virtually all cases of unrelated live kidney transplants in Karnataka over the past five years. A Frontline investigation gained access to a large sample - 288 cases in one data set and 274 cases in another - of these particulars. The data in hand strongly suggest that far from being a demonstration of altruism, virtually every one of these cases of donation of a kidney on grounds of emotional 'affection or attachment' or 'compassion' is an exploitative and illegal financial transaction between a poor donor and a relatively well-to-do patient.
An analysis of the sampled particulars highlights the following features of the commercial racket in kidneys in Karnataka:
* while most donors and recipients are from Bangalore, they also come from other parts of the State and from other States, indicating the formation of a nationwide network of agents
* while there are areas of donor concentration, such as Mandya district, these have become less marked over the years, suggesting that agents are learning to spread their net to prevent detection
* addresses of donors are frequently falsified in the records
* a certain number of patients come from abroad and, in contrast to the period before the 1994 Act came into force, tend to bring with them donors from their own countries
* transplants in Karnataka are predominantly an exchange between men
* donors from a particular hospital tend to submit the same reason en bloc for the donation
* close to a fourth of 274 cases of unrelated live donors who went before the Authorisation Committee were shown to be in dependant relationships to the recipients or their families - as housemaids, watchmen, factory workers and so on
The evidence from the Karnataka data is that the racket has got increasingly sophisticated and networked over time. That the kidney trade is exploitative of the poor and the needy is highlighted by the large number of cases where donors are shown, in the second set of official records, to be employees or unrelated dependants of the recipients. Evidently, the Committee had programmed itself to believe the fiction that the donations even in these 65 cases (scrutinised by Frontline) were not exploitative and did not involve any commercial consideration.
This large-scale and flagrant violation of the law was sanctioned by the very institutional mechanism set up to prevent it. It is clear that the Act, by allowing unrelated donors to 'donate' their kidneys after gaining the sanction of the Authorisation Committee, facilitates and provides legal cover to the buying and selling of kidneys. If the trade in Karnataka was inhibited for a brief period by the enactment of the legal prohibition, it has resourcefully adjusted itself to the new institutional mechanism and taken full advantage of the provisions for non-enforcement built into the Act. As a result, unrelated live transplants clearly involving financial transactions are on the increase in Karnataka, and little is being done about it.
"Underlying the trade is the attitude that the poor can be bought by the rich," Dr. H. Sudarshan, the highly regarded Chairman of the Karnataka Task Force on Health and Family Welfare and a winner of the Right Livelihood Award, Stockholm (which is sometimes described as the 'alternative Nobel Prize'), told Frontline. "Vested interests are promoting unrelated [live] transplants. Large sums of money are shared by doctors and hospitals that perform such transplants. I believe it is the Authorisation Committee that has a special responsibility to prevent this and I would put more blame on them for not implementing the Act effectively."
The failure of the Appropriate Authority and Authorisation Committee, the two regulatory bodies set up under the 1994 Act, to discharge their statutory responsibilities is not a new story. Their insensitivity to the legal prohibition on the buying and selling of human organs, on pain of stiff punishment, is evident in their response to the recent unearthing of a massive and widespread trade in kidneys by the Mandya police (see "Kidneys still for sale" by Parvathi Menon in Frontline, February 15, 2002). The police investigation established, prima facie, systematic violations of the Act in Karnataka over a four-year period. This unprecedented investigation has not however galvanised either of these bodies into follow-up action. The Authorisation Committee continues to give its approval to unrelated live transplants.
The Mandya story broke in mid-January and the Authorisation Comm-ittee held its first meeting for the year on February 16. From that date to March 2, 2002, 10 applications for live unrelated transplants came before the Committee for approval. Of these applications, eight were cleared. One case was rejected as the recipient failed to submit a medical certificate stating that he had ESRD and another application is pending.
According to official data available to Frontline, the Karnataka Authorisation Committee has the dubious distinction of approving 1,012 out of a total of 1,017 applications that went before it between January 1996 and February 2002.
True, the Committee was expanded and reconstituted in March 2001, and although it now boasts a police representative nominated by the Bangalore City Commissioner of Police, it has been business as usual. Post-Mandya, there is no evidence that the seven-member Committee has seriously reconsidered or improved the method of scrutinising each case in a way that can expose a financial transaction. This became clear in conversations Frontline had with some of the Committee members.
In fact, when judging the merits of an application, the Committee members appear to be more preoccupied with trying to convince themselves of the strength of the 'emotional bondage' between the donor and the recipient than simply trying to apply common sense to judge whether money could be changing hands. "We take half an hour to grill the patient and the donor to see if there is really an emotional bond between them," Dr. G.V. Nagaraj, Director, Directorate of Health and Family Welfare Services and a member of the Committee, told Frontline. "It is so difficult to establish mala fide. You see the pathetic condition of the patient... for example when a man becomes sick and he leaves behind a young wife." He seemed to shudder at the memory.
Dr. Nagaraj and another member of the Authorisation Committee (who did not wish to be named) mentioned the case of a 16-year-old girl who appeared before them as a donor. The Committee rejected the case on account of her age and because a financial deal was obviously involved. Yet it did not file a complaint on this blatant violation of the Act nor indeed on the other four 'rejected' cases over a six-year period. Frontline's repeated requests for an interview with the Chairman of the Authorisation Committee, H.S. Kempana, who is Secretary in the State's Law Department, were turned down by his office. His sole comment to Frontline was that he was answerable only to the High Court of Karnataka.
Karnataka's Appropriate Authority too appeared disinclined to strike while the iron was hot. Its response to the Mandya revelations made this clear. Under the 1994 Act, the tasks of this Authority are to grant registrations to hospitals to conduct transplants; to suspend such registrations if necessary; to enforce the required standards in hospitals through periodic inspections; and most important of all, to investigate any complaint or breach of any provision of the Act. The State's Appropriate Authority was reconstituted from five to seven members in December 2001. It is significant that the name of Dr. Philip Thomas of St. John's Medical College Hospital, an active campaigner against the kidney trade and an enthusiast for a cadaver-based transplant programme, was quietly dropped in the reconstitution.
The first meeting of the reconstituted Authority was held on January 29, 2002. At the meeting, a decision was taken to authorise Amar Kumar Panday, the zealous Superintendent of Police (S.P.) in Mandya sub-division, to file a complaint in the jurisdictional court under Section 22 of the Act. According to G.V. Krishna Rau, Commissioner, Health and Family Welfare Services and Chairman of the Appropriate Authority, the scope of the brief given to the S.P. was wide. He was authorised to file complaints before the appropriate courts "in respect of all contraventions of the provisions of the Organ Transplant Act, 1994."
This development with its promise of getting to the bottom of a trade that involved or affected a web of special interests - agents, hospitals, nephrologists and transplant surgeons, the official medical establishment, bureaucrats, and influential relatives of recipients and of the doctors involved in unrelated live kidney transplants - proved too good to last. According to informed sources, pressure was put on the State government. Soon enough, the case was taken out of the hands of the S.P., Mandya and entrusted to the Corps of Detectives, where it now pretty much languishes.
The Appropriate Authority has not sorted out the jurisdictional confusion that persists over the status of the case. Rau told Frontline in early March that the Authority proposes instead to issue a general directive "within the next 10 days" to all district police superintendents authorising them to pursue independent investigations into violations of the Act. "In this general directive," he explained, "we will be specific about what constitutes an offence under the Act and what the police should be looking for. They will not have to wait for our formal authorisation each time."
Admitting that the Appropriate Authority had "not done much regulation since the initial registration of hospitals", Rau said it would now start to inspect each hospital before the renewal of its licence. Despite the fact that 19 kidney agents were picked up by the police from outside and within the premises of prominent hospitals in Bangalore, the Authority is not planning any action against the hospitals. Rau explained this stand by asserting that if the Authority received concrete evidence about the role of hospitals in the trade, it would take action. "We should not be going soft on institutions," he assured Frontline. "We have enough reasons to suspect that things are not as they should be and we will request the police to keep a watch on hospitals." It appears that, for obvious reasons, the Authority responsible for having violations of the 1994 Act investigated and prosecuted has chosen not to use the opportunity provided by the Mandya police expos to get to the bottom of the large-scale buying and selling of kidneys.
A promising new investigative track into the racket has been opened by a complaint filed by Alladi Jayasri, a reporter of The Hindu, before the Lokayukta, an ombudsman-like authority set up under a 1994 State Act to enquire into allegations of corruption, maladministration, nepotism and abuse of power. (India's first Lokayukta to enquire into allegations of corruption against public servants, including the Chief Minister, was established in Karnataka in 1984. The present Lokayukta is Justice N. Venkatachala, a former Supreme Court judge.) Jayasri's complaint was registered before the Lokayukta on January 29, 2002. "Both the Appropriate Authority and the Authorisation Committee have been made party to the complaint by Alladi Jayasri," Dr. Sudarshan, who is also the Lokayukta's Vigilance Director for Medical Services, told Frontline. "It is an important development and we are certainly going to pursue the complaint."
In her complaint, Jayasri has asked that action be initiated against the two bodies for "having failed to prevent, time and again, scams and scandals in organ (mainly kidney) trading, in gross violation of the Act." She has held the Appropriate Authority accountable for failing to perform the functions as notified under Chapter IV, Section 13 of the Act. These are "i) to suspend or cancel registration of transplant centres violating the law; ii) to enforce standards for hospitals; iii) to investigate any complaint of breach of the provisions of the Act; iv) to inspect hospitals periodically for examination of the quality of transplantation and follow-up medical care to persons who have undergone transplants and persons from whom organs are removed. Needless to say, the last two have been followed more in the breach, leading to repeated eruptions of scandals like the one in Mandya District on January 15th."
The role of the Authorisation Committee is squarely addressed here. "As for the Authorisation Committee," the complaint notes, "it has failed to uphold the law, ethics and moral rectitude in allowing itself to be persuaded to issue clearances for hundreds of unrelated transplants, becoming a pawn in the hands of unscrupulous elements, and helping the organ trade thrive in Bangalore and other parts of the State." Jayasri has asked the Lokayukta to "accord priority" to an issue "that has had far-reaching, debilitating effects on society." Dr. Sudarshan believes that this complaint provides an excellent opportunity to expose and strike at the trade. Once the Lokayukta uncovers the complicity of different parties in the organ trade, the pressure to take action against them under the Transplantation of Human Organs Act can be stepped up.
THE Transplantation of Human Organs Act, 1994 is meant to "provide for the regulation of removal, storage and transplantation of human organs for therapeutic purposes and for the prevention of commercial dealing in human organs." It illegalises the trade in kidneys and makes kidney-for-cash transactions a criminal offence, punishable with a term of imprisonment ranging from two to seven years and a Rs.10,000 to Rs.20,000 fine. The Act defines persons who can donate kidneys as "near relatives", specifically spouses, mothers, fathers, sisters, and brothers. The Act also recognises the concept of brain-stem death and makes provisions for the development of a cadaver-based organ transplantation programme that can meet the demands of gravely ill patients and eliminate cash-for-organ transactions.
The progressive aims of the Act are, however, defeated by two major built-in flaws. First, trade in kidneys or other human organs, or any other violation of the Act, is a non-cognisable offence. In other words, the police cannot launch independent investigations into such violations. Under Section 22 of the Act, a court can take cognisance of offences committed under the Act only on a complaint made by the Appropriate Authority or an officer authorised by it, or by an individual who has given prior notice of not less than 60 days to the Appropriate Authority.
Despite the suspiciously large number of unrelated live kidney transplants that have taken place in Karnataka since the Act came into force, despite periodic media reports and despite the forthright views expressed by some doctors who oppose the buying and selling of kidneys from the high ground of professional and general ethics, the Appropriate Authority is yet to make a single complaint on its own to the police. The January 2002 investigation launched by the Mandya police was technically on a case of forgery after they obtained evidence that a residence certificate of a donor from Mandya, submitted to the Authorisation Committee, was forged. This led to the arrest of 19 suspected agents who were picked up from the premises of several prominent hospitals in Bangalore, including Lakeside Hospital and M.S. Ramaiah Hospital.
The Act's fatal flaw lies in Section 9(3). This clause has made the Act virtually unenforceable. It permits unrelated donors, for reasons of "affection and attachment towards the recipient or for any other special reasons," to donate their kidneys to ESRD patients provided they can convince the State Authorisation Committee that they are 'donating' and not selling their organs. If the Committee is persuaded that money has not changed hands, it can allow such a donation. The willingness of the Committee to be persuaded that the unrelated live kidney donations are being made on account of "affection and attachment" or for some other "special reasons" is a key factor working in favour of the kidney trade. Neither the extreme implausibility of employees or unrelated dependants donating kidneys without money changing hands nor highly suspicious factors such as recipients and donors living far apart without ostensible connections have stood in the way of the Committee approving transplants.
Over the years a sophisticated network has been built by agents who, operating in various places including hospital corridors, put kidney patients from all parts of the country in touch with poor donors. The Authorisation Committee interrogates the donor and recipient separately and asks them a standard set of questions about their relationship - how long they have known each other, a description of the area the other lives in, and so on. Agents coach donors and recipients to face what has become a standard and predictable format of interrogation. The donor must submit a ration card, a residence certificate from the police, an affidavit stating the donor's willingness to donate the kidney, and basic hospital documents. The Mandya police investigations reveal that up to 80 per cent of the verification documents from the police could be forged.
Frontline has scrutinised data covering almost half of the more than thousand cases that went up before the Authorisation Committee since its establishment in 1996. The data clearly establish that the Committee bears much of the responsibility for the farce that has been made of the Transplantation of Human Organs Act, 1994. The Committee considers a mere four to five cases a week. It spends around half an hour on each case. A Committee member told Frontline that though members were aware that money had changed hands between the donor and recipient, they could do little besides accept the sworn testimony. "It is difficult to tell when a financial transaction takes place. Often the donor will say that he has worked for the patient for many years, that the patient has helped his family, and that he is deeply attached to the patient," admitted a member. The Authorisation Committee member was unable to explain why the Committee does not look into cases in more depth or conduct random checks on donors' addresses when only four or five cases are considered every week.
Nor has the Appropriate Authority performed the role entrusted to it. "The only task that the Appropriate Authority has performed properly was the initial registration of hospitals performing kidney transplants," Dr. Philip Thomas, a former member of the Appropriate Authority, told Frontline. Since then the Authority has neither conducted random checks on hospitals nor investigated any allegations of organ trading and hospital complicity that have been reported in the media from time to time. The Authority's failure to carry out its mandated duties has resulted in other abuses of the law. Dr. Thomas told Frontline that the Rules of the Act forbid a doctor from performing kidney transplants in more than one hospital. A hospital gets around this rule by appointing an 'expert', who is then free to call for assistance, invariably from a 'friend' who performs transplant operations at another hospital. The Appropriate Authority can easily crack down on this practice but it does not.
As early as July 2001, the overt trafficking in kidneys was brought to the attention of members of the two regulatory bodies by Dr. Sudarshan, Chairman of Karnataka's Health Task Force. He made several recommendations to help the bodies improve their functioning. One recommendation was that both bodies should be reconstituted with the inclusion of a member of a concerned non-governmental organisation (NGO). Another was that the Appropriate Authority should meet at least once every two months.
Dr. Sudarshan also listed a set of criteria that hospitals must meet for their licences to be renewed by the Appropriate Authority. Hospitals doing transplants must (1) have an ethics committee, (2) submit the detailed clinical documents and indications for the transplant, (3) submit the details of blood groups and cross-matching reports of all relatives of the patients, (4) ensure that all recipients of kidneys are residents of Karnataka for a minimum of five years, (5) perform medical check-ups on donors and recipients every six months and bear full responsibility for this, (6) notify the Appropriate Authority if a transplanted organ is rejected, or if a patient dies, and (7) notify the Appropriate Authority if the donor has any 'disability complications,' or if the donor dies.
Another key recommendation of the Chairman of the Health Task Force is that the Authorisation Committee should ensure that the donor and the recipient have lived in close association for a period of at least one year for the donor to form an 'emotional attachment' to the recipient. 'Close association' should also be verified by a police authority, whose rank is not lower than that of a Superintendent of Police or an Additional Superintendent of Police. The donor should produce his or her ration card and/or identity card as proof of residence. He or she should also produce a certificate from a psychologist or a psychologist worker. The psychologist must ensure that the donor is aware of the risks involved in donating a kidney and must verify the authenticity of the donor's 'emotional attachment' to the recipient.
Only two of Dr. Sudarshan's recommendations were adopted. The Appropriate Authority and Authoris-ation Committee have been reconstituted and the Authorisation Committee now requires donors to submit their ration cards.
The medical profession plays more than a passive role in the illegal trade. Several doctors who spoke to Frontline in confidence referred to a doctor-broker nexus, even if there are nephrologists and transplant surgeons who take a conscientious professional stand against the trade in kidneys.
Secondly, several doctors with a vested interest in unrelated live transplants seem to play a subtle role by spreading medical disinformation. A kidney recipient in Bangalore told Frontline that his doctor had assured him that he would die if he did not have a transplant. Such advice is, of course, medically unfounded. Dialysis is a safe, reliable and viable option for kidney patients, particularly for those living in cities with access to good quality medical care. In fact, in many European countries only 30 per cent of kidney patients opt for a transplant.
Thirdly, many doctors involved in unrelated live transplants do not inform potential donors of the risks involved in donating their kidneys and the changes that would be required in their lifestyles post-donation. A comprehensive study of kidney vendors in Iran provides ample proof of the negative effects, particularly in developing countries.
Finally, it is well established that many doctors encourage patients to opt for live unrelated transplants over cadaver transplants on the ground that the rejection rate is much lower when the kidney is from a live, even if unrelated, donor. As a generalisation, this is self-serving propaganda.
The economics of the organ trade is a new field of study in India and abroad. How does the market fix the price of a kidney? It clearly depends on whose kidney; the type of kidney and blood group of the donor; the condition, desperation and purchasing power of recipients who are buyers; the conditions in which the vendors of kidneys live; the availability of medical capabilities and infrastructure in the field of kidney transplantation; the willingness of hospitals and doctors to shut their eyes to the illegality of what goes on; and the system's toleration of organ commerce, whatever the law might say.
What is clear is that an increasingly networked, broker-enabled kidney trade has emerged in India, with centres of transplant specialisation such as Bangalore drawing a clientele from near and far. There is sporadic, mostly anecdotal, information on what precisely live vendors of kidneys get after brokers take their commission. Media reports suggest that the price of a kidney in South India ranges from Rs. 40,000 to Rs. 60,000 and that a poor or needy vendor gets anything between Rs. 25,000 and Rs. 40,000 after the broker deducts his or her commission from the purchase price. Various kinds of sharp practices, which deny vendors the full sums promised, have been reported.
Case particulars available for several hundred applications for unrelated live donations of kidneys in Karnataka suggest that not all the recipients are rich or well off and that, in fact, a considerable number of recipients belong to the middle class. For a patient, the cost of a kidney transplant operation could be anything from Rs.150,000 to Rs.300,000 or higher; the cost varies from hospital to hospital.
A few survey-based studies of the economics of the kidney trade in South India have been done, or are in the works. Their findings should be of great interest in India and abroad.
Is the Transplantation of Human Organs Act unenforceable? Before the Central legislation came into force in Karnataka and other States doing large numbers of kidney transplants, notably Tamil Nadu and Maharashtra, it was not illegal to pay for a kidney. Large numbers of ESRD patients from various parts of India and even foreign countries flocked to Bangalore, Mumbai and Chennai for transplants. A network of doctors and agents helped them procure kidneys from poor donors (see Frontline, December 26, 1997).
It was also not uncommon to see advertisements for kidney donors in newspapers. After Karnataka adopted the Transplantation of Human Organs Act in 1995, the number of unrelated live kidney transplants dropped dramatically, suggesting that the Act was succeeding in its purpose. Frontline's 1997 investigation revealed that while 354 unrelated live transplants were performed in 14 authorised hospitals in 1994, the number fell to 149 in 1995. But the trend was too good to last. Vested interests soon found a way to manipulate the Act, aided by apathetic and negligent regulatory bodies. The graph of unrelated live kidney transplants soon began to rise. In 1996 the number was 160 and in the first 10 months of 1997 it was 165. Since then the figures have run off the charts, with the Authorisation Committee clearing 192 applications (with no rejections) in 1999, 222 applications (with no rejections) in 2000, and 169 applications in 2001.
In the light of the Act's failure, many opponents of the kidney trade believe that the 1994 legislation is unenforceable. They argue that Section 9(3) -which allows unrelated persons to donate their kidneys "by reason of affection or attachment towards the recipient or for any other such reason" - will always provide cover for the trade. Dr. M.K. Mani, Chief Nephrologist at the Apollo Hospitals in Chennai and a distinguished campaigner against the trade in kidneys, has an article on this subject titled "Making an Ass of the Law." It was published in 1997 in The National Medical Journal of India (Vol.10, No. 5, 1997). The article highlights the fact that the unrelated live donor programme, which is exploitative of the poor and hampers the growth of a cadaver-based transplant programme, flourishes "with the seal of approval from the Authorisation Committee" and that a law meant to prohibit trade in human organs "now provides protection for those very commercial dealings." It is clear that as long as the loophole exists, agents will continue to find ways of linking poor donors to ESRD patients; and that for the buying and selling of kidneys to stop, Section 9(3) must be scrapped.
The Karnataka experience demonstrates that seven years after the adoption of the Transplantation of Human Organs Act, 1994, the kidney trade continues to thrive, stronger than ever before.