Roots of the organ racket

by Zubeida Mustafa
Source: Dawn

A MAJOR international meeting opened yesterday in Karachi. This was the triennial Conference of the Asian Society of Transplantation (CAST) that has brought together 200 experts from Asian countries and a few more from Europe and America.

They will be discussing issues related to organ transplantation. Although CAST gives the impression of being a very technical forum of medical professionals, the major issue to be debated is of a non-technical nature and directly concerns lay people. In Pakistan, it has acquired a grave dimension.

The issue is the ethics of organ transplantation, especially its commercialization that has now, unfortunately, become rampant in this country. True, many others have had to grapple with this problem as well. The example of India having become a kidney bazaar a few years ago may be recalled. But where others have managed to control the malpractice by adopting the required measures and showing the political will to act, we don’t appear to be too overly concerned.

As any society develops and acquires state of the art technology to transplant organs to save people’s lives, initially laws to regulate the new phenomenon do not exist. Therefore, the unscrupulous elements lurking on the sidelines are quick to step into the vacuum to exploit the predicament of the seriously ill, who are desperate for an organ for survival, and impoverished people burdened with debts and in need of money.

Normally, at this stage the state and society intervene to check the operation of the economic law of supply and demand. A look at the scenario all over the world tells the full story. It is estimated that in the developed countries there is a need for 73,000 kidneys, 22,000 livers, 20,000 hearts and 7,000 lungs to save critically ill people. But only 36 per cent of this need is fulfilled. The situation is worse in the Third World where the population is more and the incidence of organ failure is higher — the need being for 350,000 kidneys, 140,000 livers, 85,000 hearts and 33,000 lungs. Only 1.6 per cent of this need is met.

In Pakistan, where only renal transplantations take place in normal course, the crisis is more acute. Nearly 150,000 people develop end-stage renal failure every year. They need dialysis if they are to survive at all and transplantation if the quality of their life is to be improved.

With only 120 dialysis centres all over the country, and most of them charging a hefty amount for each session, dialysis is not always the treatment of choice. A person needs as many as two or three sessions a week each lasting three hours or so and the end result is not a life that can be described as ideal. With a strict regimen of water intake and dialyzing schedules to be observed, many patients find life on dialysis rather restrictive.

Hence, more and more patients are turning to transplantation as the treatment for end-stage renal failure. The initial reserve has been broken now that there are successful cases of transplantation surgery with patients leading a full life. With 20 transplant centres in the country — of which 19 are in the private sector, each charging about Rs 500,000 for one transplant surgery — the technique is now quite commonly known. The Sindh Institute of Urology and Transplantation is the only centre in the public sector and it offers all treatment free of cost. Even kidney transplantation costs nothing at SIUT which performs nearly 120 transplant surgeries a year using live, related donors to obtain organs.

Private centres are undertaking 1,500 cases per annum and most of them use organs purchased from unrelated donors. There are villages in Punjab where the entire adult population is known to have donated — rather sold — a kidney for a paltry sum of Rs 100,000. Commercialism is the name of the game in transplantation transactions, and as happens in such cases, money becomes the deciding factor. Whether a patient will get an organ and whether he has the right to life will be determined by his economic status. Small wonder then that 60 per cent of the beneficiaries are foreigners who have the means to pay the exorbitant price.

As for the donor, the one lakh he receives via the middleman vanishes in no time leaving him in debt as before and minus a kidney. Given the conditions he lives in and in the absence of post operative follow-ups the donor may find there are new health problems he has to contend with.

In the absence of a law, the beneficiaries are also suffering, the massive expenses notwithstanding. The surgeons who carry out the operation unethically in such circumstances are not upholding the Hippocratic oath they took when they graduated. Many of the patients are known to fall ill because of the rejection of the organ they receive as the tissue typing had not been carefully done. Others are sent home (to faraway lands) much too soon after their surgery and there is no follow-up care.

What is the solution to this problem? Dr Adibul Hasan Rizvi, the director of SIUT, believes that a cadaver organ donation law which recognizes brain stem death and bans the sale of organs from live donors would help ease the crisis. It would regulate the transplantation process and increase the availability of organs by allowing their harvesting from cadavers.

One cadaver can give the gift of life/sight to 17 people. Recognizing the right to life of each and every individual, the Europeans have centralized their system by creating a registry of organs available and the details of the patients in need of them. Thus, the whole process is coordinated and is managed professionally and fairly.

Many Third World countries, including Muslim states, have also adopted a law to regulate organ donation and transplantation and to give a definition of brain death.

The most important of these are Hong Kong, the Philippines, Singapore, Taiwan, China, South Korea, Japan, Thailand, India, Indonesia, Saudi Arabia, Turkey, Iran, Tunisia, Jordan, Lebanon, Malaysia and Bangladesh.

The idea of having a law of this kind was to check the organ trade and when implemented properly it has proved successful in checking this unscrupulous trade.

It is a pity that none of the six governments that have been in office in Islamabad since 1994 when the revised cadaver bill was introduced in the Senate have deemed it important enough to get the law adopted. This has deprived the country of a rich source of organs and has also allowed the organ trade to flourish. Only two cases of cadaveric organ donation are on record in Pakistan. They were done with the consent of the families who were highly motivated. These were extraordinary acts of altruistic service to humanity but they enjoyed no legal sanction. In the absence of a law, it has not been possible to launch a campaign to create awareness about the issue of brain death and cadaveric donation of organs and to mobilize people to come forward to give the gift of life to others when they themselves die.

The first question that comes immediately to mind is why the cadaveric law has not been adopted. An impression is being created that the religious lobbies are opposed to it as they consider the removal of an organ from the dead as desecration of the human body. But so much work has been done on this by the transplantologists in the Muslim world that resistance from the orthodox ulema has been worn out. So many fatwas have been issued by Islamic organizations to the effect that organ donation (even cadaveric) to save a life is a sawab, that it would now need a bold prayer leader or scholar to condemn organ donation and justify the death of a person rather than his taking recourse to transplantation.

With the countless television channels discussing religion and the right and wrong of things being analysed in the religious context, this issue would have come up in a big way if there was any resistance from the Islamic lobbies. That leads us to the conclusion that at best it is simply the apathy of the government and political leaders that has prevented the cadaveric organ donation bill from becoming law.

At worst, sleaze and corruption of the organ trade has spread so far and wide, high and low, that vested interests have been created that are blocking progress. It is time that those who are honest and not involved in making money from the organ trade should join hands to get the bill through parliament.