‘Organ’izing Kidney Sale
…Don't call it my 'deathbed',
Call it my 'bed of life'-
Let my body be used by others,
To lead fuller lives'…
Call it my 'bed of life'-
Let my body be used by others,
To lead fuller lives'…
For almost a week now, India is agog with the news of yet another kidney racket in Gurgaon, near Delhi. It was only last year that the story of Tsunami victims becoming targets of kidney brokers made the headlines.
In this instance not less than seven doctors were allegedly involved, along with several middlemen. The leading characters in this 6-year 'mega' drama had an uncanny penchant to target the most needy. The devious plot, when unraveled, shook the collective conscience of the nation.
The modus operandi followed a 'by now familiar' pattern, whereby hundreds of the jobless or daily laborers were targeted. Under the pretext of finding jobs, they were lured to hospitals run by the kingpins and possibly without their consent, relieved of their one kidney.
Although a few arrests have been made, the prime accused has fled the scene. What remains are a flurry of discussions and mindless debates on the subject, all in the name of public welfare!
Rise of the Rackets
Why do these organ rackets take shape and flourish? Are these rackets all about exploiting the poor or is there more to it?
According to statistics available there are more than two lakh people suffering from terminal kidney ailments in India. However, only a few thousand individuals are able to afford an expensive transplant surgery which will cost anywhere between 1 to 3 lakhs with an additional Rs.5, 000 to 10,000 per month for the immunosuppressive drugs.
Of these it is estimated that 50% are able to get a relative to donate and the other 50% procure it from the 'Grey-Market'. All the ethical and legal problems originate from these 1500 to 2,000 kidneys. In many instances even if a relative donates the attitude that prevails is 'why you can buy? why should we donate?'
As a result the voluntary donation of kidneys, by friends or relatives, has never quite picked up the much-needed momentum. Cadaver donation (now called deceased organ donations), which is very popular in the west, is almost non-existent in India. Our donation rate is 0.05 to 0.07 per million whereas even countries like Turkey and Poland have a donation rate of 4 to 6 per million population.
The reason why cadaver donation has not picked up in the country is the lack of awareness among the public and the medical fraternity and not so much due to our to our religion and culture.
Besides, doctors don't help the situation as they are often reluctant to declare a person 'brain dead' in the ICU.
Long arm of Law
All the afore mentioned factors lead to a shameful shortage of kidneys and a never-ending tale of exploitation, black marketing and racketeering.
There are several loopholes in the Transplantation of Human Organs Act of 1994. According to this law, only altruistic donation of organs is acceptable whereby, close family members donate organs to the needy. But the law also agrees for donation by those who are emotionally attached to the recipients.
In the absence of a measuring scale for emotional attachment, this clause creates a loophole. Along with an inadequately functioning surveillance system, this loophole is a boon to the unscrupulous who ensure that India, with its sizable poverty -ridden population, became the 'kidney capital of the world'.
As a method of streamlining kidney transplants in India, there were discussions in the media about legalizing unrelated live organ donation. But such rabble- rousing debates clearly expose the immaturity with which members of the fourth estate have handled the issue.
One must also remember that in this kidney- focussed debate, other organs like liver, heart, lungs and pancreas too are much in demand by the end stage organ failure patients.
Agreed that there is an acute shortage of organs, which may be a lifeline to many. But in order to save lives, the quality of the existing ones should not be compromised. It is only fair that one looks at the complete picture when we talk about organ donation and explore the possibility of promoting the cadaver programme in the country in a big way.
Benefits of legalization
For the sake of the argument, let us take a peek into the pros of legalizing unrelated kidney donation.
• Legalizing unaltruistic organ donation would no doubt cater to the huge demand that exists for human organs. Affected individuals wait for several years for a kidney and many die while waiting.
• This move would, not only dilute the exploitative trends that exist but also stifle black marketing.
• With a stamp of lawful approval, red tapeism can be done away with and hope may find a way into the lives of the hapless.
• The money collected through these means could also be used to do subsidize transplants on financially- challenged individuals.
• For argument's sake, if blood and eggs (for infertility treatment) can be sold, kidneys can be sold too.
Hazards of legalization
• Organs- kidney and liver (part liver) donation in India is largely dependant on live donors who are poor and are looking desperately for money, either to pay off the loan sharks or to take care of some immediate need. Their short- term gain evaporates very fast.
• Many studies have shown that when donation takes place with altruism as the motive, there is no sense of loss. But when commerce is the motive, the feel good factor is missing and there is an immense dip in the quality of life. Due to this, even the post-operative recovery is prolonged.
• Legalizing unrelated paid donation would be an impetus to legalize other spurious activities like - prostitution, child labor and drug pedaling. In other words, such a move would endorse poverty and all the vices that go with it.
• Organ trade follows a unidirectional flow. Not a single news was flashed about the rich or the socially visible being targets of the kidney trade.
• There is no systematic post -operative care for these donors. Most of these individuals are uninformed and have no idea of what they are in for.
• One cannot equate selling blood or eggs to kidney donation. The blood and eggs are regenerative while kidneys and liver are critical organs. The procedure of donation is more complex and sometimes life threatening.
• Organ donors are not patients. A major operation has its morbidity and mortality. One is thus subjecting a normal person to a hazardous procedure. This is against the Hippocratic ethical doctrine - 'Do no harm'
A document by Scheper-Hughes, an anthropologist from Berkeley who is against legalization of trade in organs, says that 'in general, the movement and flow of living donor organs - mostly kidneys - is from South to North, from poor to rich, from black and brown to white, and from female to male bodies'.
The Iran Model
Many proponents of unrelated donation quote the Iran model where the govt. pays the donor a fixed amount. Let us take a closer at the Iran Model based on a couple of studies done by Javaad Zargooshi of the Department of Urology at Kerman Shah University of Medical Sciences, Iran.
Zargooshi queried 300 individuals who donated their kidneys for money. This was done 6 - 132 months after the transplant. His observations provide a hair-raising insight into the potential outcomes of legalizing kidney trade in India.
• 65 per cent of interviewed donors admitted that the kidney sale had a negative impact on their work. 38 per cent, mostly laborers, were forced to quit their jobs, as they were unable to work effectively after the transplant.
• Many donors were afraid of injuring their other kidney and hence were anxious about getting back to work.
• Ninety per cent of the donors expressed a complaint of ill health and decreased physical ability. Common complaints included fatigue, chest-pain, palpitations, nervousness, backache and tremors.
• Seventy per cent suffered from post-donation depression and 60 per cent suffered anxiety.
• Several donors admitted to attempting or contemplating suicide. There were many donors who had killed themselves.
• Seventy per cent complained of worthlessness, while 85 per cent said that if they were given a second, they would not forgo their kidney; besides, they would also advise other potential donors against kidney donation.
• Many donors complained of increased social seclusion and marital discord after trading their kidneys.
Zargooshi sums up as follows, 'Considering the fact that the main or sole reason for donation was financial, it became clear that in the absence of altruistic motivations on which the donors could depend, financial loss became intolerable and depressing.'
The work of Zargooshi has been published in The Journal of Urology, Vols. 165 and 166.
These finding are similar to the observations of Madhav Goyal on his subjects in India. Goyal's study has been published in the JAMA, where he states, 'The motive fordonation out of commerce are different from donation out of true altruism'.
It is no hidden fact that altruistic kidney donations among relatives cannot satisfy the burgeoning need. Nevertheless, legalizing unrelated transplant is hardly a befitting solution.
Being civilized demands a certain degree of decorum. It is terrifying to think that human body parts are up for sale. Rewarding a person for a benevolent act is different from luring the poor to part with their kidneys in return for a promised sum. In case of the vast majority this promise is never kept and their misery continues.
The law enforcers in India are often mute witnesses, when not abetting a crime. Under such a situation it would indeed be wise not to legalize unrelated organ trading. It would be akin to opening the Pandora' s box.
There have been efforts to remedy the situation but there is a complete lack of national co-ordination. The spotlight should be on harvesting organs from cadavers and brain- dead individuals.
Organizations like MOHAN (Multi-Organ Harvesting Aid Network) Foundation functioning from Chennai and Hyderabad have done some pioneering work in the field of cadaver organ and body donation. The NGO with its limited resources has facilitated more than 350 kidney, liver and heart donations; besides many hundred corneas and human bodies that were donated for the purpose of science. MOHAN shown that it is possible to run such a programme in India with some imagination and persistent effort. MOHAN needs to partner with the Government to make cadaver donation in India a reality. This dream is, perhaps, not far off!
The Department of Science and Technology, Government of India, is all set to promote the National Deceased Donor Transplantation Network, an effort to set up a centralized kidney registry.
On the flip side, there must be a collective effort to change public attitude towards organ donation. Spreading awareness to promote altruistic donation along with empathy towards our fellow beings holds the key to a hope- filled future!
'Don't take your organs to heaven…
…Heaven knows we need them here!'