The deceased organ retrieval rate in Tamil Nadu is 1.3/million population (pmp), about 10 times more than the rest of the country
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.
According to public health experts, the interventions that are most likely to lead to large change are actions at socio economic level – making access to healthcare more equitable, and to change the context in which organ retrieval decisions are made. In countries with the most active deceased donor programmes, a potential donor is presumed to have given consent for donation unless there is evidence of their desire to opt out. Admittedly, such a law may be difficult to recommend in the immature Indian healthcare system because of the fear that organs will be removed from those who could have been potentially saved.
“While paid donations exploit the poor and the vulnerable; deceased donations, if not allocated in a transparent and fair manner, preferentially end up serving only the well-off. This is a serious human rights issue. We need a monitoring system which ensures that the donations are made in an ethical manner and first reach those who need it the most,” says Dr Vivekanand Jha, The George Institute for Global Health – India.
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, through which a lot of steps were taken to improve the role and functioning of the authorisation committees and a better framework was laid down for donation and to prevent exploitation of females. At the same time, the government has put into place a mechanism to promote deceased donations.
Another area which needs to be looked at are paid donations. It is another method by which the poor and the vulnerable are being exploited by middlemen. With a promise of a hefty sum in return, individuals agree to donate organs, but eventually receive far less money that what was promised to them. As a consequence, the family income declines but almost one-third, thereby pushing them further into poverty. Close to 95 per cent of the organ sellers in a study from India admitted that their decision is not based on the humanitarian ground of saving a patient with chronic kidney disease and close to 90 per cent of them reported ill-health after selling organs. Besides being exploitative, it projects the Indian healthcare system in a poor light internationally.
“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.
A heartening feature is the continuing crackdown by the Indian law enforcement authorities on such activities when they came to light, including the conviction of some wrong-doers. Unfortunately, this has not proved enough of a deterrent, and 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 are able to afford the cost of organ transplant. And so, an average Indian remains deprived. “Now that the Indian government has announced a National Dialysis Programme, it would be a travesty if people prefer to stay on dialysis which is free rather than getting a kidney transplant. This is a serious human rights issue and a serious wastage of what actually is a national resource,” argues Dr Jha, adding that even despite the announcement of the National Organ Transplant Policy and framework, the Deceased Donor Program remains stillborn in most parts of India.
A large number of potentially transplantable organs remain unutilised because of lack of awareness on the part of ICU physicians. A recent study showed that in a big tertiary care centre, less than 10 per cent of presumed brainstem dead patients could be converted to actual donors, suggesting a huge untapped potential for deceased organs. Some states which stand out as examples have been Tamil Nadu and to a lesser extent Gujarat. The Tamil Nadu Deceased Donor Donation programme and the Tamil Nadu Network for Organ Sharing have adopted forward looking policies. The deceased organ retrieval rate in Tamil Nadu is 1.3/million population (pmp), about 10 times more than the rest of the country. Data from the small Union territory of Chandigarh shows an even greater retrieval rate of 9.5 pmp. These examples show that given the will, it is indeed possible to improve performance.