Joy of giving

July 05, 2019

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Zubeida Mustafa
Zubeida Mustafa

PAKISTAN is a bundle of contradictions. We have acquired the latest technologies in medical fields. But we have failed to keep pace with these changes. In fact, socially, we have stagnated if not actually regressed.

Take the case of organ transplantation, which has made great headway in the country thanks to the Sindh Institute of Urology and Transplantation. The institute provides free treatment to nearly 2.6 million patients every year, and performs 350 kidney transplantations from live-related donors. The SIUT also provides free-of-cost, lifelong healthcare to the donors as well as the recipients.

What is the people’s attitude? In 1985, the first patient, Abdur Rashid from Azad Kashmir, received his brother’s organ at the SIUT. In the three decades since then, the director of the Institute, Dr Adib Rizvi, has spoken on hundreds of occasions to convince people how important deceased organ donation is for the successful performance of an organ transplantation programme — saving people’s lives and pre-empting organ trafficking which brings a bad name to the country. An organ transplantation law has been enacted and a conference of ulema in Karachi has recorded its opinion declaring organ donation to be Islamic. We still lag behind.

In another effort to highlight the issue, the SIUT’s bioethics centre, CBEC, organised an international conference on ‘Ethical Deceased Organ Donor Programme and the Role of Transplant Coordinators’ last week. In a panel discussion I attended, four countries were represented — namely, Iran, India, Saudi Arabia and Pakistan. What emerged was not at all encouraging.

The organ donor culture just does not exist in Pakistan.

Two factors count most in the success of a deceased organ donor programme. They are the infrastructure and the commitment of the public. The first includes issues such as the availability of ICUs with ventilators in public-sector hospitals, a clear definition of ‘brain death’ and the presence of trained transplant coordinators. The second equally vital factor is the prevalence of a public culture of deceased organ donation. Unfortunately, Pakistan lacks both.

The total number of donors in Iran in 2018 was 923, which amounts to 11.26 per million population (pmp). The corresponding figures for Saudi Arabia in 2017 were 110 (3.33 pmp); India in 2017 was 723 (0.58 pmp). Pakistan has the dubious honour of having only five deceased donors in the last two decades.

Providing me these figures, Dr Farhat Moazzam, the chairperson of CBEC, added Spain to the list, describing it as a success story with 2,241 donors at the rate of 48 pmp in 2018 — the highest rate in the world.

One concedes that Pakistan’s infrastructure is dismal — with our health system in a shambles, one cannot really expect to have many ICUs with ventilators and, without them, one cannot get patients with brain death who alone qualify as deceased donors of organs.

But, even otherwise, our people have not been generous cornea donors — which need no ICUs. Our blind recipients have to depend on Sri Lanka for corneal donation. The organ donor culture just does not exist in Pakistan. But one approach is still left to be tested ie getting the families of deceased donors involved in this mission.

At the conference, delegates spoke about enlisting and training non-professionals as transplant coordinators to counsel the relatives of the potential donor on a ventilator. A person who has lost a loved one and donated his organs would have more credibility as a counsellor. He has experienced the shock, anger and grief that death brings, as well as the deep satisfaction of giving a mortally ill person a new life by donating the organs of a close relative.

When I met the father of Naveed Anwar, Pakistan’s first deceased organ donor, I could feel his emotions at the loss of a young son and how he felt driven to donate his organs. Mr Anwar and his family would attend all organ donation events at the SIUT when he was alive and was invited. Similar was my impression on meeting the wife of another deceased organ donor, Dr Abdul Razzak Memon, who told me how kidney disease ran in the family and they understood the plight of such patients who needed an organ. She felt she had to help when her husband suffered brain death. Such initiatives need to be institutionalised.

In other countries, similar experiences have prompted a movement that has made deceased organ donation a way of life there. An American journalist, Reg Green, set up the Nicholas Green Foundation to keep his son’s memory alive. Seven-year-old Nicholas was shot dead by robbers while vacationing in Italy. His parents donated his organs to help give a new life to seven young people. A Canadian, George Marcello, a recipient of a liver transplant, expressed his thanks to his anonymous donor by setting up the Torch of Life campaign to spread the message of deceased organ donation. Such are the voices which come from people’s heart. They are always heard.

www.zubeidamustafa.com

Published in Dawn, July 5th, 2019