By Zubeida Mustafa
In the early 1970s a magistrate from the interior of Sindh died of kidney failure in Civil Hospital, Karachi. This should normally not have merited a mention, especially twenty years later. Nearly 10,000 people in Pakistan come down with kidney failure every year.
But Mr Shaikh’s death, that was the magistrate’s name, proved to be an event of far-reaching consequences. In those days there were no facilities in Karachi for dialysis (let alone transplantation) — the only process by which the life of a patient of end-stage renal failure can be sustained. Mr Shaikh was sent to London where he was dialysed for a few weeks until his budget was exhausted. He was sent home with the false assurance that he was cured. He returned to Pakistan very pleased with himself looking forward to a new life. He brought as a token of his gratitude a small gift of handkerchiefs for the urologist who had attended to him in Karachi.
But the urologist was deeply distressed to see his patient back, because he knew that without dialysis Mr Shaikh did not have long to live. Karachi had no dialysis facilities to offer.
There were others like Mr Shaikh whose life ended tragically when their kidneys failed. Engineers, students, doctors and even young mothers with babies.
Their suffering, however, had one positive aspect. It spurred the CHK urologist’s quiet quest for a feasible solution. That led Dr Adibul Hasan Rizvi who shared the agony of Mr Shaikh and others like him on an uphill road which transformed the Urology Department of the Civil Hospital from a non-descript unit into a modern institution which offers the latest medical technologies for the treatment and management of kidney diseases. It has grown out of the utter sense of helplessness and despair that Dr Rizvi felt when he witnessed the avoidable death of colleagues, friends and patients suffering from kidney failure. Today, in recognition of the Department’s role in the field of urology the Sindh government has upgraded it into an Institute.
It provided 18,250 dialysis to kidney failure patients in 1991, has carried out 192 transplantations since 1986, offers lithotrypsy facilities and has a modern pathology lab for tissue matching and much more. What is significant about the Urology Institute is that being a public sector organisation notwithstanding, it provides sophisticated and modern services to the people and that too free of cost.
The reality of this contradiction hits you with full force no sooner than the moment you enter the Institute. From the filth and muck that typifies the Civil Hospital you step into a different world: well-kept and hygienic wards, the most modern laboratory, operation theatres and a dialysis unit manned by an efficient and courteous staff. The Institute hardly resembles a public sector health facility.
What has gone into the making of the Institute is an inspiring story of the struggle of a man determined to provide the best medical services to the poor through a public sector hospital. For that purpose he created a fine team that has held together through thick and thin. Dr Adib Rizvi recalls the challenges he and his team faced when he launched the dialysis programme. First was the problem of gaining general acceptance for a technology that was relatively new.
“Lack of confidence, misinformation and ignorance compounded the situation,” he says. “Even the medical profession was sceptical. Matters were made worse by the fact that only terminal cases were referred for dialysis and that made the mortality rate very high. Only when we had expanded enough to take in more patients for dialysis and save their lives, did we manage to convince our colleagues that dialysis held great potential.”
Financing a programme that is costly — more so now when transplantation is an integral element — was another major problem. The argument advanced by the critics was that it did not make sense to spend so much on dialysis (and transplantation) when you could treat many more people for tuberculosis or eradicate malaria with the same amount of money.
“Many, including my colleagues in the medical profession, felt that my priorities were wrong. But with hindsight I can tell you that had we not launched our programme, we would still have been saddled with TB and malaria, while in the meantime many good people who have now been saved would also have died of kidney failure.
“Moreover, we managed to keep our programme going because we decided not to go to the government for funding. Public donations have been our mainstay,” says Dr Rizvi.
The Society for the Welfare of Patients of Urology and Transplantation that was set up by doctors and donors funds the programme. It collects donations which have been used for purchasing medicines, especially the fabulously costly immuno-suppressant drug (one bottle of Cyclosporin costs Rs 5000 and initially, when higher doses are needed, barely lasts a fortnight).The Society also provides financial support for dialysis — each session costing Rs 600. The modern lab, lithotrypter and transplantation operation theatres have been set up with public donations. What is more, the Society also pays the salary of nearly 50 per cent of the staff which includes doctors and paramedics who are not on the hospital rolls. Given the health authorities’ very narrow criteria for budgetary allocations, the Urology Department was treated as a 25-bed unit. No account was taken of the fact that many more patients were coming in for services such as dialysis, ultrasound and lithotrypsy and they had to be attended to. Hence the extra staff and the need to turn to the public for funds. For that Dr Rizvi and his team had to demonstrate through their performance to prospective donors — big and small — that the Urology Department would make good use of their contributions.
But providing the medical technology is not the only answer to the problems of a patient of renal failure. He/she invariably needs extra support, given the psycho-social pressures his illness creates. Many of the patients go into a state of depression. Others find it difficult to cope with the demands of the medical treatment — high cost of medicines, the hassle of travelling down to the hospital twice or so a week for dialysis or accept an organ for transplantation from a relative. These problems are invariably compounded by poverty. Moreover, in the case of transplantation especially, there is need to rehabilitate a person who had previously withdrawn from Society. It is here that the CHK Urology unit’s social role is of immense importance. It is not just financial help that is needed. What is more important very often is the “brainwashing” — to use Dr Rizvi’s words — that is required to convince a person who was in the throes of a slow death that he can once again become an active and useful member of society. The Society’s support system is remarkable. It involves bringing the successful cases of renal transplant (the success rate is 95 per cent for one year survival) in contact with the seriously ill in order to inspire them and instil confidence in them. Besides they must be encouraged to resume a normal life once they receive a kidney transplant. The role the Society — with the help of the doctors, paramedics and a team of social workers — plays in this respect is quite unparalleled, more so considering the fact that most patients come from the low income groups.
And these problems pale into insignificance before the larger challenges. Kidney transplantation — which is the logical next step after dialysis — has encountered social resistance. Although its scientific and technical credibility has now been established, people by and large have to be convinced that transplantation surgery has come to stay.
“We want the question to come from the people: Kidney failure? Why can’t the organ be transplanted. Why can’t you transplant the liver? The heart? To induce them to ask these questions, we must demonstrate the miracles of transplantation to them, which for us professionals is safe and routine surgery. Our workers in this campaign are the patients who have received a fresh lease of life with a transplanted kidney. As active members of society leading a normal life they are the best models of the wonders of organ transplantation”.
People have to be told about this modern procedure not simply because they must accept it when needed — much headway has been made in that respect already and willing donors are readily found among close relatives. The procedure of organ transplantation needs public awareness and support so that a full-fledged system of cadaveric organ donation can be started in Pakistan. Dr Rizvi is of the view: “There is no law against it. Even Islam is not against it otherwise Saudi Arabia would not have had an organ transplantation programme based on cadaveric donation. We have social inhibitions. Deep seated reverence for the dead. Fear of the unknown. All this has hindered the transplantation programme. We are working to educate and motivate the people. We hope to enlist the support of some MNAs too”.
Given the dedication and dynamism displayed by Dr Adibul Hasan Rizvi and his team, this venture deserves to be crowned with success.
Source: Dawn 04-08-1992