Donating yourself – The tortuous journey to donate your organs

kidney donation

The Finance minister , Shri Arun Jaitley underwent a kidney transplant operation successfully recently, following in the footsteps of Mrs. Sushma Swaraj, the External Affairs Minister in 2016. Even as he recovers from the surgery, the transplant has brought into focus, the lives of lakhs of people  living in the shadows – those who are waiting, often for years for a kidney that could be transplanted into them. In the meantime, their lives- personal and professional are put on hold 3 days a week as they check into a hospital and strap themselves to a dialysis machine(if they can afford the cost !), in a seemingly unending routine. Our ministers seem to have successfully been able to navigate the many challenges surrounding organ transplants in India – legal challenges, socio cultural challenges and of course legal and infra structural challenges, although in both cases, the donors are supposedly “ distant relatives”.

Although there are many facets to organ transplants( Kidney, liver and corneas are the organs most commonly transplanted), looking at kidneys transplants (which are the easiest) alone will illustrate the problem. Legally, Organ donation in India comes under the ambit of the Transplantation of Human Organs Act, which was introduced in 1994 and amended in 2014, but the law in its almost single-minded bid to curb sale of kidneys, is so strict that it is more of a constraint than an enabler when it comes to facilitating organ transplants. Despite the law allowing organ retrieval from the brain-dead patients, kidney donations by live donors remain very much in vogue and, according to a recent study, the country sees more such transplants than any other country in the world barring the US.

While it is not known how long exactly Swaraj or Jaitley had to wait to get their transplant surgery cleared, for most people the wait is interminable, and some estimates indicate that 95 percent of those on the waiting list for a kidney die before their turn to access a kidney comes. Unrelated donors and recipients go through a far more stringent process to show proof of genuine ties of concern, compared to a related donor. Two lakh people are added to the list of those who desperately need a kidney each year in India but merely 7,000 get it. This means just 3.5% of fresh annual demand for the organ is met. For the rest, the wait can extend to an agonizing 5-7 year or more, depending on blood group, financial situation and overall health.

Just consider the rules for being eligible for a kidney transplant in India. If a near relative of the patient is willing to donate his or her kidney, then there is little problem. Private hospitals would expedite the process as they charge a fortune for the transplant. In the government hospitals, the delay could be due to usual red-tape in convening the mandatory meeting of the authorized committee to consider the requests, to examine the relevant papers and to interview the concerned persons. It depends on the relatives of the patients as to how strongly they can push the official machinery to get it going fast. Those who are familiar with the ways of making the government institutions work get the sanction quickly, but those who just wait for their turn not knowing where and how to push the system suffer a delay.

However, the definition of a near relative is quite specific: one’s parents or children, grandparents or grandchildren, spouse or siblings. If the donor is one of them, things are simple. But, if any “near relative” of a patient is unavailable, unwilling, or unfit to donate a kidney, then the law and its draconian provisions kicks in. In all other cases, ( where the donor is typically presented as a distant relative !) the permission for the kidney transplant is usually denied. The law says  that a non-relative donor can be considered only if one is willing to offer a kidney out of “affection and attachment” to the donee, or for a special reason, but never out of consideration of money. Such a provision  virtually makes it impossible for a non-relative or a “ distant relative” to donate. The fact that most of these men and women, who come forward to donate, are from the poorer strata of the society and are mobilized by middlemen to offer a kidney in consideration of a certain sum of money, doesn’t help either.

It is a harsh law, which is tilted in favour of the powerful who can manage to find a donor, and whose altruistic credentials, the official committee is ready to endorse. It is a law against the non-elite for whom it is virtually impossible to convince the committee about the altruism of the donor. The draconian law was envisaged with good intentions — to ensure that the poor are not exploited and made to part with vital organs by organized gangs  but despite this, illegal commerce has not stopped.

The presence of a growing middle class, the lack of a national health insurance scheme, the growing disparity between the rich and poor, and to some extent the presence of technology in the country makes the process of commodification of organs a simple, quick, and attractive business proposition for some and a solution for others has a societal issue to it. It relates to the exploitation of the poverty-stricken people by alluring them with financial gains that at times can be large and can meet their immediate short-term financial needs. The government needs to perhaps enact a law allowing voluntary donation of an organ in exchange for a minimum stipulated amount of money.  However, Giving in to market forces and making organs a commodity is fraught with dangers and erodes social, moral, and ethical values and is not an alternative that can be acceptable to overcome the problem of organ shortage in a civilized society. That will always remain the challenge before us.

Shantanu Dutta is a former Air Force Officer and now a Development Worker for the last 25 years and more..


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