Establishing donor registries will help protect living donors and track their outcomes
Even as India celebrates organ donation day today (August 6) with members of the medical fraternity calling for more awareness on the need for organ donations, The George Institute for Global Health - India has called for reforms in organ retrievals in the context of both living as well as deceased organ donations so that the benefits could reach all who truly need them.
"While paid donations exploit the poor and the vulnerable, deceased donations preferentially end up serving only the well-off. This is a serious human rights issue which needs to be addressed by the policy-makers," says Dr Vivekanand Jha of The George Institute for Global Health - India. "Stem-cell therapies promising the moon to the people without evidence to back such claims are also on the rise in India and that is big cause for concern."
India has come a long way since the 1980s and 1990s when it was identified as a common destination for commercial transplants and transplant tourism. The Indian Parliament outlawed commercial transplants and recognized the concept of brain death allowing organ retrieval from deceased donors through the landmark 1994 Transplantation of Human Organs Act. The number of commercial transplants fell after the enactment of this law, although, there have been instances of abuse of the law, some of whom have been widely publicized thanks to the vibrant media.
In 2008, after the adoption of the revised WHO Guiding Principles and the Declaration of Istanbul, the Indian government amended the Transplantation of Human Organs Act. The role and functioning of the authorization committees has been better defined, tests to ascertain relationship were prescribed; greater caution was suggested to prevent exploitation of females, a mandatory requirement for all foreign nationals to obtain clearance from the Authorization Committee and embassies of their home countries has been introduced, and the penal provisions stiffened. At the same time, the Government has put into place a mechanism to promote deceased donations.
However, paid donation to this day continues to exploit the poor and the vulnerable. Most of them are exploited by middlemen who lure them by promising a hefty sum. Clinching evidence provided by a group of independent American researchers, who tracked down over 300 individuals who had sold a kidney in Chennai showed that the donors received far less money than what had been promised to them during the process of initial bargaining and instead of improving, the family income declined by about one-third after donation.
"The number of participants living below the poverty line actually increased by 20 per cent after the donation and 75 per cent of the participants whose motive for selling the kidney was payment of debts, continued to be in debt," points out Dr Jha.
Over 95 per cent of the sellers admitted that desire to help a gravely ill patient with kidney disease was not a factor in their decision and close to 90 per cent of participants reported significant deterioration in their health status. Wives had been forced to donate against their wishes to because the husbands needed money. When asked what advice they would give to others contemplating selling a kidney, over 80 per cent said that they would not recommend such a step.
The Indian law enforcement authorities have continued to crack down on such activities when they came to light, including the conviction of some wrong-doers. Unfortunately, such instances continue to be reported from multiple locations in India.
The issues are pretty much the same when it comes to deceased organ donations. "Even though we have a good law, only the very rich including some foreigners are able to afford the cost of organ transplant. And so, an average Indian remains deprived. This is a serious human rights issue and a serious wastage of what actually is a national resource," argues Dr Jha, adding that even though the Indian National Organ Transplant Program, which envisages setting up of National Organ and Tissue Transplant Organization has been in the works for a long time, it is yet to take effect.
Some states, such as Tamil Nadu have forged ahead of the rest of the country, but still a large number of potentially transplantable organs remain unutilized because of lack of awareness on the part of ICU physicians. A recent study showed that in a big tertiary care center, less than 10 per cent of presumed brainstem dead patients could be converted to actual donors, suggesting a huge untapped potential for deceased organs.
"We also need to protect our living donors, who perform this altruistic act of supreme sacrifice, by providing them with lifelong medical care. Establishment of donor registries that track their outcomes, will go a long way in achieving this goal" said Dr Jha.
Adding to the complexity of an unregulated commercialization is stem-cell transplant which is being promoted in the country as a cure for almost all diseases. However, except for bone-marrow transplant for certain hematopoietic disorders, rest all remain unproven and potentially dangerous. Such interventions should be done only in the context of clinical trials, as has been suggested in the guidelines by the ICMR.
"The need of the hour is to regulate the proliferation of such mushrooming clinics offering unproven stem-cell therapies and empower patients in making the right decision by providing them with accurate information," points out Dr Jha.