May issue 2018
Desperately Seeking Donors
As the country teeters on the brink, many of the socio-economic and political evils of yesteryears are making a comeback in a big way. One of them is the reprehensible organ trade. Rearing its ugly head at the turn of the century, the sale of kidneys was somewhat suppressed when the Transplantation of Human Organs and Tissues Ordinance was promulgated in 2007. This criminalised the sale of human organs and tissues. Thereafter, the opponents questioned it on several grounds, leading to yet another round of legal struggle.
This ended successfully with Parliament enacting the Transplantation of Human Organs and Tissues Act in 2010, amidst a lot of rejoicing. Its credibility was established when some rogue elements in the medical profession and their accomplice vendors were arrested. Thus, good was deemed to have won over evil. One didn’t realise at the time that this was a case of misplaced hope.
Some recent reports (especially two write-ups by Naziha Syed Ali) in Dawn made it clear that the criminals were back in business. This time they were careful and avoided media publicity. The papers were not flooded, as they were a few years earlier, with images of rows of people in rural areas photographed with their shirts pulled up displaying the incision marks across their torsos – the tell-tale sign of surgery for kidney harvesting.
Matters came to a head when Dr Adibul Hasan Rizvi, director of the Sindh Institute of Urology and Transplantation (SIUT), wrote to the Supreme Court and drew its attention to what was happening, mainly in Punjab. In support of his contention, he sent the emails he was receiving from foreign doctors complaining about their patients having travelled to Pakistan and having been trapped by the organ traders. They had returned home mortally ill.
Under the coordination committee set up by the Supreme Court, the SIUT organised a seminar and workshops last month to formulate recommendations to step up deceased organ donation (DOD). Dr Rizvi believes this to be necessary to change the pattern of demand and supply of organs and thus the economics that drives the heinous trade. Since human organs are in short supply, they can be sold at fabulous prices to desperately ill, wealthy patients. There is grinding poverty in some regions of the country, in many cases created by exploitative landlords and brick kiln owners, leading to the compulsion for impoverished people to sell their organs. There are also surgeons whose greed knows no bounds and they have chosen to forget their Hippocratic Oath to serve ailing humanity. These three factors have combined to give rise to perfect conditions for the commercialisation of organ transplantation in Pakistan.
What is equally appalling is the minimal public awareness about health and illness and the general apathy towards the burden of disease among the people. It is only when a person falls ill that he begins to learn a thing or two from his own experience. With a media that has forgotten its key function of educating the people, it cannot be expected to take too passionately to health education programmes that have little commercial value. This public ignorance provides the medical profession its huge clientele. The fact is that the burden of disease in Pakistan can be considerably reduced by taking a few preventive measures. Spread more public awareness about healthy living. Provide sanitation and potable water to the people. The healthy environment thus created will cut down the incidence of disease.
That would explain why kidney problems are on the rise in the country. Since the deceased organ programme has not taken off, the demand and supply gap has widened making organ trade such a lucrative venture.
Will this exercise of drawing up recommendations produce any fruitful results? It all depends on the will and the capacity of those working for the implementation of the suggested measures. The transplantation law that was drafted by the late Justice Sabihuddin Ahmad is still believed to be a good law. Changes in the rules could finetune it further. As for putting a halt to the odious organ trade, the present law is sufficient for the police to take action and for the courts to act if they want to. The crime is committed so blatantly, that concerned authorities can crack down on the criminals – even those with powerful connections – if they want to.
The SIUT’s conference and workshops, however, served a useful purpose in another way. They underlined the need to change our social attitudes and culture towards organ donation which Zehra Nigah, our top ranking poet, described as “Tuhfa-e-Hayat-e-Nau” (Gift of a new life) in the poem she recited on the occasion.
There is, undoubtedly, a need to create the infrastructure, train medical professionals in how to handle life-and-death issues, in communicating with the patients and their relatives, and also define, in layman terms, issues like brain death. The recommendations address all these. Dr Rizvi also brought up the issue of capacity. He pointed out that the existing number of ICU beds in Pakistan cannot provide sufficient organs – even if consent has been given – to meet the needs of the country. Setting up a centralised registry for donors and patients in need, would facilitate the smooth and efficient working of a transplant programme in Pakistan. This can be accomplished by the numerous professional medical bodies, working closely together and with the government.
The real challenge is to create public acceptance of deceased organ donation. In this context, the recommendations for the media and for education campaigns to create public awareness and popularise legal organ donation, are most pertinent. Some suggestions for the media, such as integrating the subject of organ donation in TV plays and programmes and including the theme in school textbooks, has the potential to be effective.
The need is to analyse the basic factors that have hampered the awareness of deceased organ donation. Religion is no longer an obstacle. Islamic scholars in Pakistan, and in other Muslim countries, unanimously agree that deceased organ donation is sanctioned by Shariah.
Superstition, ignorance and the fear of death that have given rise to a negative attitude to deceased organ donation in our society. People need to be told about death and grieving – especially of the need to talk about these phenomena. There is a need to help people see the beauty in the idea of saving lives.
What better strategy can be adopted than what the SIUT itself opted for, when it needed to popularise organ donation by living donors related to each other. Initially, this idea was too radical for people to accept. The battle had to be won if the SIUT’s kidney transplant programme, that was launched in 1985, was to succeed.
After the first few patients and their families had been persuaded to accept this miracle of modern medicial science, it became easy sailing. The patients and their donors became motivators for those who followed. The high rate of recovery of those with transplanted kidneys, along with the care and compassion the patients and their donors received, and the guarantee of life-long free medical cover, proved to be major incentives.
I remember Rasheed, Transplant Patient #1 who came from Azad Kashmir with his brother, who was the donor. They became the agents of change for patients visiting SIUT. There was Rukhsana, the medical student and Transplant #9, whose sister helped her out. She went on to become a doctor.
Such cases became an inspiration for other patients and their families. There was a lot of interaction among the various patients and donors, but there were also the unfortunate ones who didn’t have a donor. How could their lives be saved? The answer was: by deceased organ donation.
That is what the SIUT’s conference was all about. Pakistan has had five deceased organ donors, now rightly described as national heroes by SIUT. The first such donor was Naveed Anwar, a student who was fatally injured in a road accident. When he was certified as brain-dead by a team of neurologists, his family – progressive and enlightened – decided to fulfil his oft-expressed wish to be an organ donor if he met such a fate. Dr Razzaq Memon was another and his family also donated his organs in keeping with his will, in spite of some reservations from the biradari.
I mention these two because I have met their families and they have repeatedly endorsed deceased organ donation and their own role in the programme. And so it was that deceased organ donation made a debut in Pakistan. It should be noted that the first three donations were made even before Parliament had passed the law, which certainly helped in promoting the concept.
The inspiration provided by the five heroes, needs to be brought to the fore. The families should lead this campaign. They have experienced the pain of losing a loved one. They have also felt the inner satisfaction and peace that comes from saving a life. Their words will carry weight, just as the SIUT’s presence on a high moral ground in Sindh has kept the organ traders away from this province.
Zubeida Mustafa is a senior journalist. She writes on a variety of subjects but her interest has mainly been in the social sector which she has covered extensively. She has investigated in-depth issues such as education, health care, women’s empowerment, children’s rights and the lives of ordinary people.