Popularising a programme

Published : May 01, 2002 00:00 IST

Tamil Nadu shows the way in organ donation, but it still has a long way to go to make the cadaver transplant programme popular.

ON January 21, 16-year-old Thyagarajan, who suffered ventricular haemorrhage, was declared brain dead at Apollo Hospitals in Chennai. But his organs live on in six men. Just the previous day, 26-year-old Manikandan's organs had saved the lives of five people. Recently, two-year-old Moses, upon his death, gave a fresh lease of life to three people.

These and many such acts are noble gestures not just on the part of the donors but, more important, their kin who allow the harvesting of organs from brain-dead persons. If Tamil Nadu is the leader in cadaver organ transplantation in the country, it is thanks to the awareness generation campaigns mounted to spread the message of organ donation.

Cadaver transplantation got an impetus from the Transplantation of Human Organs Act, 1994, which was adopted by several State governments in 1995, when a major racket in kidney sale was uncovered in Bangalore (Frontline, March 10 and July 28, 1995). The Act was intended "to provide for the regulation of removal, storage and transplantation of human organs for therapeutic purposes and for the prevention of commercial dealings in human organs". It delineates clearly the link between the prevention of commercial dealings in organs, particularly kidneys, and the emergence of a cadaver transplant programme.

The Act provides for an institutional structure to authorise and regulate human organ transplantation and to register hospitals that are permitted to perform the surgical procedure. It recognised, for the first time in Indian jurisprudence, the concept of brain-stem death, thus allowing the harvesting of organs from cadavers for transplantation. The law made illegal any commerce in human organs - making cash transactions for body parts, especially kidneys - a criminal offence. Section 19 of the Act outlaws the sale of organs for money. The Act recognises only two categories of live donors - near relatives and those who donate "by reason of affection or attachment towards the recipient or for any other such special reason". Even for these categories, the approval of the donation by an Authorisation Committee established under the Act was made mandatory.

In order to stamp out the trade in organs and to promote a cadaver transplant programme, the Act fixes brain-stem death as "the stage at which all functions of the brain stem have permanently and irreversibly ceased..." Under the Act, brain-stem death must be certified by a board of medical experts set up under Section 3(6).

However, only 377 kidneys, 34 hearts, 12 livers and one each of lung and pancreas have been harvested and transplanted in the country since the Act came into force. Tamil Nadu tops the chart with 53 per cent of the kidney transplants (201); 44 per cent of the heart transplants (15); 58 per cent of the liver transplants (seven) and the sole lung replacement. Four major medical institutions in the State - Apollo Hospitals, Sri Ramachandra Medical College and Research Institute (SRMCRI), Chennai; Christian Medical College Hospital (CMCH), Vellore; and Madras Medical Mission (MMM), Chennai - lead the cadaver transplant programme with 82 per cent of kidney, 86 per cent of liver and all heart transplants in the State. Yet, Tamil Nadu's cadaver transplant programme and the implementation of the Transplantation of Human Organs Act have a long way to go. According to Dr. J.V. Thachil, chief urologist at Apollo Hospitals, the continuing commerce in organs, particularly kidneys, acts as a disincentive to investing in a cadaver transplant programme.

According to Dr. R. Ravichandran, Director, Madras Institute of Nephrology (which operates from Vijaya Hospital in Chennai), the cadaver transplant programme can benefit only the better-off among patients. Patients receiving cadaver-harvested organs have to be on immunosuppresants such as cyclosporin for life, which would cost over Rs.10,000 a month. Thus, according to Ravichandran, in the case of kidney transplants what is needed for a country like India is a massive campaign for live related organ donation, which also gives the best results. A cadaver-based programme, he says, can probably reduce the trade in organs, which also largely benefits the well-off. But it certainly cannot be a substitute for live related donation, as in the case of the kidney. For other organs which necessitate a cadaver programme, considerable infrastructure needs to be put in place, he says.

Some hospitals and organisations are indeed working to put in place an effective cadaver transplant programme and, more important, to change social attitudes towards organ donation. For instance, Apollo Hospitals leads the way in kidney transplants from brain-dead patients. It performed the country's first cadaver renal transplant in October 1995. Since then the hospital has performed 88 more such transplants. Similarly, MMM, which performed the country's first successful heart transplant in 1995 and heart-lung transplant in 1998, performed nine more until June 2001.

A lesson from Apollo Hospitals' experience is that a cadaver transplant programme cannot take off unless the sale of organs is stopped and independent investments are made to set up necessary infrastructure for a cadaver-based programme. Dr. Thachil said: "For a cadaver-based programme a hospital needs a 24-hour laboratory that can do cross-matching as soon as an organ is harvested from a cadaver. It must also have the infrastructure for transplants; not just doctors but theatres and nurses in a constant state of preparedness."

According to Dr. K.C. Reddy, chief urologist, Devaki Hospital, Chennai, the drop in the sale of organs and the improvement in the cadaver programme do not mean that supply would match demand. He cites the example of countries such as the United States and the United Kingdom which have long waiting lists for organs from cadavers though they have in place effective cadaver programmes and where organ sale is almost non-existent.

But this, says Dr. Sunil Shroff, chief urologist, SRMCRI, can be no excuse to allow organ trade. He also cites the example of Spain, which has the best cadaver-based organ transplant programme with 31.5 donors per million population (it is 21.2 in the U.S., 16.9 in France and 16.7 in Portugal) and where the waiting time is short. Many countries in Europe follow the principle of "presumed consent", that is, every citizen is considered a donor unless he or she specifically opts out.

According to Dr. Shroff, organs can be harvested from accident victims who are brain-dead or who have brain haemorrhage. Once a brain-dead person's relatives agree to organs being harvested, the transplant team has to move fast as delay can affect the prospects of success. The hospital bears the expenses of keeping the donor on life-support systems, while the harvesting costs are generally passed on to the recipient.

The most important step is getting consent from the kin. Some progress has been made in this regard, with better awareness and a change in social attitudes about organ donation. In Tamil Nadu, credit for this must go largely to the Multiple Organ Harvesting Aid Network (MOHAN), created by Dr. Sunil Shroff in January 1997. It links up hospitals under the Initiative for Organ Sharing (INOS) programme so that organs harvested in one hospital are made available to another. MOHAN launched a campaign in Tamil Nadu using the print and electronic media. During a period of two years it organised over 500 meetings, especially for school and college students. It also embarked on a door-to-door campaign. Encouraged by the response, MOHAN got 15 volunteers for its campaigns.

In 1999, MOHAN began distributing donor cards. By signing and carrying a card, a person consents to the harvest of his or her organs on death. MOHAN has so far distributed over 1.5 lakh cards. Soon after it launched the donor card, it conducted a sample survey in Chennai to study social attitudes towards organ donation. The sample was stratified in order to capture different socio-economic classes and religious groups. Of the 8,000 questionnaires distributed, response came from 5,008. The survey revealed a high level of awareness about organ donation; over 50 per cent of the respondents were familiar with the concept of brain-death. More than 70 per cent were willing to carry a donor card. Significantly, while 72 per cent of the respondents readily agreed to donate eyes, only 45 per cent were willing to donate "solid organs (kidney, heart, liver, pancreas and lungs)". A subsequent survey showed that the "conversion rate" (from agreeing to donate to donating actually) was 18 per cent. The figure will be higher now, says Dr. Shroff. Lately, families are coming forward to donate organs of brain-dead relatives. This is also because MOHAN has developed a protocol - called the "Sri Ramachandra Protocol" - to ask for organs. As donation of corneas has become acceptable, eyes are asked for first. Once the relatives agree to this, the request for donating "solid organs" follows. According to Dr. Shroff, the conversion rates seem higher now, though only a survey can confirm this.

According to A.R. Krishna-swamy, transplant coordinator at the Chennai Transplant Centre (a part of MMM Hospital, which also campaigns for organ donation and distributes organ donation cards), there is still a long way to go in order to make people come forward on their own to donate organs. MMM does only live related kidney transplants. Its cadaver-based programme focusses only on heart, liver and lung transplants. It has 150 patients waiting for a heart transplant and three for liver.

MOHAN has a group of counsellors and patient support groups to help people through the psychological and social problems relating to organ donation and transplantation. It has also tied up with organisations such as the TANKER (Tamil Nadu Kidney Research) Foundation, which helps patients suffering from kidney failure to make use of subsidised dialysis.

According to M. Stella, MOHAN co-ordinator, a survey in 1999 showed up the apprehensions of the people, including whether the organs would be wasted or sold or would go only to rich patients. There were also fears that brain-death would be induced if a patient carried a donor card.

To deal with these and other fears, MOHAN decided to link up hospitals and develop a transparent system of sharing organs. Thus was set up INOS.

Since its inception in November 1999, INOS has had under its fold five hospitals - the SRMCRI, Apollo Hospitals, the Sundaram Medical Foundation, the MMM and the CMCH - which have shared among them 54 organs (50 kidneys, three hearts and one liver). Though the MMM opted out of MOHAN in mid-2001, it has, according to Dr. Shroff, received two hearts from MOHAN.

These five hospitals have also sent harvested organs to Delhi, Maharashtra, Karnataka, Kerala and Andhra Pradesh. Says Dr. Shroff: "The idea is that organs should not be wasted. If we do not find a match in the five hospitals under MOHAN or in other hospitals in the State, we send them outside Tamil Nadu." (A kidney can be preserved for 48 hours, liver 12 hours, heart four hours, lung six hours, eyes for several months and bones and skin for an indefinite period.) Over 170 patients are waiting for an organ in the four hospitals linked to INOS.

MOHAN has a core committee of doctors from the five hospitals, and it meets every month. Each doctor on the committee is responsible for the coordination of one organ. The coordinator concerned maintains a list of patients waiting for a donor of that organ in all the five hospitals. As soon as a patient is declared brain-dead, and the relatives agree to donate the organs, a match is done with the waiting list. Once a recipient is identified - depending on the blood group and tissue match, and not necessarily on the wait-list order - it is the recipient hospital's responsibility to harvest and transport the organ. While besides the eyes and the major organs, the skin, heart valves, veins, arteries, islets and bones can be transplanted, the focus is on six organs - corneas, kidneys, heart, lungs, liver and pancreas.

According to Dr. Shroff, the main reason for the slow progress of the cadaver-based transplant programme is the lack of initiative by government hospitals, which have the largest pool of the brain-dead. According to him, it is not clear whether the problem for the government hospitals is lack of resources/equipment to keep brain-dead patients on life-support systems until the organs are harvested, or simply a disinterest in organising an organ retrieval programme as it would involve not only the identification and certification of brain-dead patients, but also the distribution of organs for transplantation. At a recent MOHAN meeting, government doctors showed much interest in the programme but said a directive from the government was necessary to enable the hospitals to join the group.

In 1999, the MGR Medical University set up an organ registry and tried linking up all Tamil Nadu hospitals for a cadaver organ donation programme. It is defunct now. According to former Vice-Chancellor of the University Dr. K. Anandakannan, on an average 79 deaths occur in Chennai every day. Even if organs are retrieved from half this number of dead, an effective cadaver programme could be in place, he said.

Says Dr. Ravichandran: "Time is a crucial factor. The infrastructure to shift accident victims to hospitals is poor. This is a major deterrent." Also, there is reluctance among the people to volunteer to shift accident victims to hospitals for fear of police harassment. This fear needs to be removed from the public mind. He also says that every major hospital needs to have a transplant team, including counsellors who can convince relatives of the brain-dead to donate organs. This is particularly important as doctors, seen as interested parties, find it difficult to convince the relatives.

If a cadaver-based programme is not in place, and if there is a thriving business in organs (especially kidneys), it is perhaps because no one is reported to have been prosecuted for violating the Transplantation of Human Organs Act. This also stands as a testimony to the failure of the Authorisation Committee in performing its watchdog role. In Tamil Nadu, there is no transparency about the Committee's functioning. Even simple, basic data such as the number of cases that came before the committee and got its approval after the Act came into force, the names of members of the brain-death certification committee, and so on are not divulged. According to Dr. Shroff, unrelated donor transplants have been rampant with the permission of the Authorisation Committee and this will certainly not allow the cadaver transplant programme to take off. The loophole in the Act needs to be plugged.

To put in place an effective cadaver-based transplant programme, work needs to be done on several fronts. To begin with, the government should link its hospitals with leading private facilities in order to develop a common donor registry and share organs. The government can also consider introducing in driving licence a column indicating the holder's willingness to donate organs so that harvesting can happen without much delay. The U.S. follows this method, though the consent of the kin is necessary. But, most important, faith needs to be instilled among the people that the programme is above board.

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