Twenty-year old Vishal’s* hopes and aspirations of becoming an engineer were dashed two years ago when he was diagnosed to have chronic renal failure (CRF) with end-stage renal disease (ESRD). As he undergoes dialysis thrice a week to keep himself alive, he is on the look out for a “good Samaritan” to part with one of the two kidneys god has given him. His parents who are diabetics are helpless since they cannot be donors.
The laws of the land have not been too helpful either in his struggle for a kidney. Vishal is not alone, however, in this ordeal. His cry for help is echoed by millions of fellow sufferers who wait in vain for a kidney that may never arrive!
Ideally, all patients deserve a kidney transplant. For many, kidney transplantation is financially out of reach and so is maintenance dialysis. Considering their already precarious financial situation, coming to terms with the disease and stopping a further drain on their finances would be the most prudent but unfortunate choice. But for the rest, transplantation remains the choice of treatment to bring a sense of normality to their lives. Procuring a kidney however is no easy task.
There is no better choice than an identical twin. Such a perfect match would eliminate the need for expensive immunosuppressive drugs to maintain the kidney after surgery. The next best would be a parent or siblings of the same blood group. In India, which is a male-dominated society, it is not surprising to see a female preponderance among such related donors. The difficulty with getting related donors is the absence of siblings, parental diseases like diabetes, and uncommon genetic diseases that may affect the kidneys of all within the family.
Cadaveric kidneys form the largest source in the West, where public education and motivation levels are high, and there is a National Registry of patients waiting for kidneys. Most cadaveric kidneys are retrieved from brain-dead but physically alive accident victims.
The success of the programme rests on minimising the reaction time to such accidents, facilities for air-lifting to the nearest organ retrieval centre and the expertise for maintaining the vitals of the victim en route. One can well imagine why cadaveric transplantation has not taken off in India.
Transplantation of kidneys from unrelated donors would be needed for a vast majority of waiting patients. The long-term survival of the grafted kidney, even if selected by a proper matching of blood group and tissue typing, is less than that with related donors but results are steadily improving with the use of better immunosuppressive drugs. But there are legal hurdles. The Transplantation of Human Organs Act, 1994 owes its birth to the huge racket in clandestine kidney trade unearthed in 1992. “Medical ethics” was the biggest loser when doctors and touts took advantage of the poverty-ridden rural masses to abet in illegal transplantations for financial gains. There is no doubt that some regulation has to be in place, but the question is whether the Act has got to the root of the problem. “Kidney scams” have relentlessly continued — in Chennai, Gurgaon and, more recently, Kolkata.
One of the provisions of the Act permits unrelated transplantation when the donor gives an affidavit that he is donating his kidney out of “love and affection” for the recipient and not for financial gains. This clause is nothing but a mockery of the Act, and is exploited by everybody, including the Approval Committee. After all, transplant brings in “big money”!
Implementation of the Human Organ Transplantation Act, 1994 has resulted in a steep fall in the number of kidney transplantations conducted in India, the ultimate loser being the patient. Corruption has crept into this life and death situation too, allowing well-connected and well-heeled families to bypass the rules for their wards while denying such an opportunity for Vishal and several other ordinary mortals.
Was this the aim of introducing the Act? It is time our policy makers gave up their tubular vision and took proactive steps to alleviate the suffering of ESRD patients by liberalising the Act, while yet maintaining stringent quality control and ethical standards.
The need of the hour is to legalise unrelated transplants. Agents and touts should be strictly kept out of the picture. The financial transaction must be legalised, transparent and the donor’s rights should be protected. The paper work for approval must be simplified and speeded up. The Approval Committee should meet more often, and more such committees should be formed at district levels.
There should be a decent remuneration for the members of Approval Committees so that they do not succumb to the temptation of illegal gratification. The Committee’s recordings should be transparent and come under the disclosure norms of the RTI Act, 2005. The health care provider too should take the responsibility for future health insurance cover and care of the donor.
God has endowed man with two kidneys. What better act of benevolence can one do than part with one of them to rekindle life into a fellow human being? In doing so, if he improves his own well being, that too is an Act of God!
* His identity is changed.
( The writer is a Consultant Urologist and Transplant Surgeon, A J Hospital & Research Centre, Mangalore)