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Doing good — after death

September 03, 2012

OFTEN, while reflecting upon the world, one comes to the conclusion that many problems would be relatively easy to fix if only people would be more flexible about changing their minds.

An issue that has been weighing on my mind is of organ donation, admittedly since someone I know was diagnosed with a kidney condition that could in the future require a transplant.

Since at least the late 1990s, it was known that patients could buy organs in Pakistan, particularly kidneys. The story broke in the print media over a decade ago when a journalist documented the suffering of the people of a village not too far from Lahore — most of the adult population were missing a kidney, forced by economic need to sell it for a fraction of the price paid by the person in need of a transplant.

By now, the illegal kidney trade that turned Pakistan into the cheapest ‘organ bazaar’ in the world during the decade past (an estimated 1,500 transplants per year for foreigners, at the cost of $20,000 to $30,000) is well-known.

As a result of untiring efforts by a number of people, including senior doctors, journalists, rights activists etc, we have a law that criminalises the sale of organs and codifies donations. There have been many hurdles in the way, put there mainly by commercial transplant centres that seek to fatten their coffers through continuing with their ethically indefensible trade. But as of late 2010, when President Asif Ali Zardari signed it, the Transplantation of Human Organs and Tissue Act 2010 is part of the country’s legislative body.

The law allows the donation of organs or tissues by a living person only if the donor and recipient are genetically or legally related. A non-blood donor can donate after satisfying an evaluation committee that the donation is entirely voluntary and no monetary transaction is involved — an effort to prevent the trade of organs.

More importantly, though, this legislation constitutes the initiation of the deceased (cadaver) donor programme in the country, i.e. harvesting organs from donors who have stipulated this, after their clinical or actual death.

There was some confusion after health affairs devolved to the provinces in wake of the 18th Amendment, but that has largely been sorted out and what remain are largely formalities.

Those that ought to be pursuing the matter continue to do so, the most recent example being that the Supreme Court last week reminded provincial governments to speedily notify the law in their jurisdictions where this had not yet been done. In other words, whatever formalities have not yet been completed by the provinces, they will be soon.

Will the lives of the thousands of patients in need of transplants suddenly get better, then? Sadly, it seems unlikely. First, consider the numbers of those in need. To take just one example, at conservative estimates, over 500 patients per day receive dialysis treatment at the Sindh Institute of Urology and Transplantation (SIUT) in Karachi.

Obviously, there are tens of dozens of other centres across the country where people undergo treatment for conditions, ranging from kidney or heart failure to optic conditions, indicating thousands of people who would benefit from transplants.

While exact figures are not available, at a conservative estimate some 15,000 Pakistanis die every year because of kidney failure, some 10,000 of liver failure and around 6,500 of heart failure. Most of these lives could be saved if organs were available for transplantation. Yet SIUT can list only four people — four! — who became deceased donors.

There are many superstitions and misunderstandings that prevent people from donating their organs once they have no more need for them.

One is that organ donation does not have religious sanction, though that is not in fact the case. Another is the idea of going to meet your Maker ‘whole’.

A third I’ve heard is that one does not have absolute ownership over one’s body and its parts — the idea is that you’re only using

them on the sufferance of your Maker. (Of course, this could be countered by saying that in that case, once you’re done with your organs — which don’t really belong to you — pass them on to do God’s work for others who need them.)

Still others see it as bad karma: as though filling out a donor card would lead to there being people out there, doctors or patients, who are willing for you to die.

For many other people, though, I would imagine that the issue is not that they are unwilling to contribute to the cadaver donation programme, it is simply because they haven’t really thought about it. I, after all, only became aware of the scale of the issue when someone I knew ended up on a road at the far end of which lies organ failure.

Medical science has progressed to a point where even if merely the blood of a donor and recipient match — if there is no exact tissue match — there is a reasonable chance that the transplant will be successful.

What we need, then, is a massive awareness-raising campaign about cadaver organ donation. Because, obviously, only a fraction of the people who might fill out donor cards and make their families aware of their wishes would actually become donors — organs can only be harvested after death under a certain set of conditions.

This awareness campaign needs to target the educated first, people who are less likely to be bound by misconceptions and superstitions. Forget 180 million, if we were able to change the minds of even a few thousand, the concept would take root and slowly spread and be normalised. Lives would be saved, and perhaps the exploitative kidney trade would be further constricted.

The writer is a member of staff.