Helpful donors come to the rescue

By Zubeida Mustafa

When ‘ the first kidney transplant operation was performed at the Civil Hospital, Karachi, on November 20, 1985, few expected it to be more than a rare surgical feat accomplished once in a blue moon. After all, the obstacles to be surmounted were several, the most significant being financial constraints. Could a hospital in the public sector with a limited budget, sustain a programme which cost Rs 140,000 to provide postoperative care and drugs to one patient for one year?

40-10-03-1989-AThere were other limiting factors as well. Even though the availability of surgical skill could be taken for granted, without an infrastructure of specialised nursing, extensive dialysis services and laboratory facilities, kidney transplant surgery could not be made routine. At that time arrangements did not even exist in the country for tissue matching, the first prerequisite for a transplant operation, and blood samples had to be sent abroad for this purpose.

Then there was the question of social acceptance of an idea that was quite radical for a society where life and death have a religious sanctity about them and are not. to be tampered with. Would donors be readily available and how would the people react to the concept of cadaveric donation, which has to be the ultimate endeavour of a transplant programme.

It has been an uphill struggle for the dedicated team of surgeons of the Urology Department of the CHK. But they have proved that kidney transplant has come to stay. With 56 transplants to their credit, the urologists have managed to institutionalise this form of surgery. To develop it on a regular basis, the transplant programme calls for an extensive support system.

This had to be carefully built up over the years. First of all the OPD had to be expanded so that the urologists got to examine as many potential transplant patients as possible. A fully functional dialysis unit had to be established to prepare the patients for surgery. Previously on many occasions even an operation to remove stones from the kidney had proved fatal in the absence of dialysis. Then special facilities had to be acquired for the highly sophisticated surgery and post-operative barrier nursing, where the kidney transplant patients require total isolation to avoid infection. A laboratory for tissue typing and other tests had to be set up

Finally an elaborate follow-up system had to be devised to monitor the transplant recipient’s progress and state of health. “It has to be a total commitment,” observes a member of the transplant team. “Once a patient is taken on the dialysis programme it becomes for us a case of ’till death do us part’. We treat our patients— those who are on dialysis as our total responsibility. We feel it our duty not simply to provide them the technical services such as dialysis and renal surgery, but also to look after the general state of their health and provide for their social well-being — for ever. There is a bond of belonging between us.”

It is this approach based on sound professional principles and humanism that characterises the CHK’s dialysis and kidney transplant programmes. But to create such a system has called for untiring effort, organisational skill and, above all, financial resources. After all, the doctors take it upon themselves to ensure that the patient on dialysis who might be required to report to the hospital twice or thrice a week keeps his appointment. That the transplant patient turns up for his periodic check-up. This makes the difference between life and death. It is also the key to the success of the programme.

When the urologists at the CHK visualised the dialysis and transplant project they had two options before them. They could prepare a feasibility report and then seek to convince the authorities to finance it. That would have, in the words of one member of the team, required the “lifetime of Noah and the patience of Ayub” to achieve. The second option was to create the team, undertake the job, produce results and then demand support from the authorities. “Initially our strategy was to beg, borrow or steal to raise funds from the philanthropists to get a programme going,” the surgeons recall.

Hence no funds were sought from the government whenever a new venture was launched. “Fifteen years ago when we felt the need to introduce dialysis in our department to establish its feasibility and win it public acceptance, we started in very primitive conditions with peritonial dialysis (in which tubes are passed into the abdominal cavity and no machine is required). After we had demonstrated convincingly that we could save our patients’ lives with dialysis we managed to get goodhearted citizens to pay for the equipment for haemodialysis in which tubes are inserted into the blood vessels through a fistula prepared for the purpose,” they continue

Today the Urology Ward has 15 dialysis machines which work round the clock in four shifts to provide the service to 130 patients. Two machines serve as stand-byes for emergency. With the exception of four machines which were purchased from the government’s budget, all the others have come from public donations.

Ingenious methods have been devised to curtail operating costs. Thus the disposables, which consist mainly of a set of tubes, are not dis carded after one use. They are being re-used as many as 15 times by virtue of the special techniques of washing, sterilising and storing them which the Urology Ward technicians have developed. The cost of one dialysis has thus been brought down from Rs 1500 to Rs 400. When the first kidney transplant was undertaken, the CHK urologists did not announce their programme. The high rate of success — only five out of fifty-six patients have died and three of unrelated causes — has won the transplant project many supporters.

Donations raised by the Association for the Welfare of Patients of Urology Department, the government’s contributions from the Zakat Fund and other sources have made it possible to provide free of cost the expensive immuno-suppressive drugs which transplant patients are required to take life-long — in larger doses initially which are progressively reduced. A 50 ml bottle of Cyclosporin- A costs Rs 3,500. On an average the drug alone costs Rs 10,000 a month in the first six months following the transplant operation. Philanthropists have been generous with their donations, generally received in kind. One of them financed the construction of the laboratory which is now equipped to carry out sophisticated tests for tissue matching and other investigations.

Its latest acquisition is the Rs 2.2 million auto-analyser. Another donor helped with the building of the special unit for barrier nursing where transplant patients are kept to protect them from infections. Now a new section comprising twin operation theatres is coming up thanks to the generosity of another philanthropist. Others have sponsored transplant patients and provide them their medicines free of cost. The emphasis is on respect for a person’s self esteem and dignity. No patient is asked to pay for the transplant and post-operative care

Hence no questions are asked about his economic status. Though those who can afford it buy their own medicines. The concern for the patient’s welfare is so strong that the doctors discreetly help out a patient who has difficulty in meeting his travel costs for his follow-up visits. What has been the Government’s response to the achievements of the CHK’s team of urologists? Their services have been acknowledged and their professional skill commended.

But there has been no extraordinary increase in the annual budget of the Urology Department. No move has been made to bear the cost of the transplants or the dialysis. In financial terms, the Government’s attitude has been most discouraging. “Heartened by the acclaim we received, we approached the Government in 1987 for a lithotryptor, a stone crushing machine, costing Rs 30 million, this equipment is the latest invention in non-invasive technology.

The Sind Government sanctioned half the amount. But before we could persuade the Federal Government to pay the rest, the Sind Government backed out of its commitment,” the urologists explain. Once again philanthropists have come to the rescue and a lithotryptor has been acquired after all by the CHK. It is the first stone crushing, machine in the public sector. Treatment will be free when a private hospital charges as much as Rs 25,000 or more. Equally discouraging has been the attitude of the pharmaceutical company manufacturing the immuno-suppressive drugs used by the transplant patients. It has been supplying at least 25 bottles of Cyclosporin costing Rs 175,000 every week to the Urology Ward. But the manufacturers have at no stage offered to reduce the price or sell the drug at concessionary rates.

“This is the company which sponsors international conferences of transplant surgeons. It can afford to put up delegates in five-star hotels and host lavish dinners in their honour. But it cannot cut down the price of its product for a Third World country where most patients are too poor to pay for their medicines,” is the bitter observation of one urologist.

The success of the transplant programme has to a large extent depended on the efficient and personalised follow-up system that the CHK doctors have devised. “We are in touch with each and every transplant patient,” they claim. This is important for a recipient is required to be under medical supervision for life. Not only are the medical records of all patients kept in order, they can also be contacted on the telephone. The convenience this offers has been a major factor in influencing the decision of a number of people not to go abroad for transplant surgery even when they had the choice.

When the transplant programme was launched a little over three years ago, it was not known how the kidney donors would respond. With no law for cadaveric donation, live donors have had to be relied on. Since they are, as a matter of principle, related to the patient — being a brother* sister, parent or offspring — emotional attachment has been the key factor in a situation where a kidney has been donated.

Moreover, as the number of transplant cases goes up, it has been easier to convince sceptical donors that they would continue to be in good and normal health with only one kidney. But as the success of transplant surgery in Karachi makes an impact and more institutions follow the CHK example, some ethical issues are bound to be raised. In neighbouring India a thriving business in sale of human kidneys has sprung up as facilities for transplant operations have expanded.

In Britain which could be expected to be ethically more scrupulous in such matters a few cases of sale of human organs have recently been reported. Some doctors were found to be involved in transplant operations in which kidneys were purchased from Turkish peasants. In Britain, under the law in the case of living donors, only relatives can give a kidney. Now legislation is being contemplated to forbid the sale of human organs In Pakistan surgeons have preempted a ghastly business in kidneys by accepting donations only from blood relations. This practice should be given legal sanction as also the -sale of, human organs should be banned.

Ideally the concept of cadaveric donation should be popularised and legalised. This principally calls for action on two fronts. First, death would have to be redefined so that brain death is recognised by law to enable surgeons to remove organs from a brain dead person for transplant. Saudi Arabia, Jordan and Iraq have laws recognising brain death. Why can?t we? Secondly, a campaign would have to be mounted to educate people about the need for cadaveric donations.

Source: Dawn 10 March 1989