Medical ethics

Sushma Swaraj's kidney transplant brings the long wait for organs back into focus

The paperwork involved to receive an organ from an unrelated donor is very cumbersome, patients complain.

On December 10, External Affairs Minister Sushma Swaraj underwent a kidney transplant surgery at the All India Institute of Medical Sciences or AIIMS in Delhi with the kidney from an unrelated donor.

Officials at the hospital told that there were no suitable donors among Swaraj’s near relatives, which according to the Transplant of Human Organs Act, could be a spouse, mother, father, daughter, son, grandmother or grandfather of the recipient. However, a distant relative, legally classified as an unrelated donor, whose blood work matched Swaraj’s agreed to donate the organ.

Doctors who work with patients suffering from kidney failure discussing Swaraj’s surgery noted that the minister got clearance for her surgery “in a matter of days”, emphasising that it would take a “common man” weeks and months of legal clearances.

They felt that Swaraj should be more open about some of the procedures followed before the surgery.

“Though one’s own health is a matter of privacy, in this case the minister let her own condition be known,” said Dr Vivekananda Jha, executive director of The George Institute for Global Health and a practicing nephrologist.

Procedural delays

A kidney transplant from an unrelated donor is extremely difficult to organise, said kidney specialists. While transplant surgeries involving related donors are cleared at the hospital level, unrelated donor transplants often require a clearance at the state level and here, the rules are different in each state.

Speaking on condition of anonymity, a doctor at AIIMS complimented Swaraj’s decision to have the surgery in India and complained that ministers often travelled abroad if they needed such medical treatment. Swaraj, he said, had known that she needed a transplant for nearly a year and had been visiting AIIMS for treatment every 15 to 20 days.

After she had made public her condition, AIIMS had got many calls from people from various parts of the country offering to donate their kidneys.

The hospital clarified that Swaraj’s operation was not planned in haste, suggesting that there was enough time for her to get the requisite paperwork done through regular channels.

While it is not known how long exactly Swaraj had to wait to get her transplant surgery cleared, for most people the wait is interminable. Unrelated donors and recipients go through a far more stringent process to show proof of genuine ties of concern, compared to a related donor.

Dr Pravin Shingare, director of medical education in Maharashtra, who also heads the State Authorisation Committee clearing live donor transplant surgeries, said that of the 700 or 800 applications they receive, about 20% are for unrelated donor transplants.

“If the donor is actually related, but distant, we clear the applications more easily,” said Dr Shingare. “If it is say a friend, then we check for the emotional attachment. We check if they went to the same school together, show us photographs, or lived in the same mohalla or galli. We will also ask their spouse, or parents how they feel about the donor’s decision.”

The committee also checks the donor’s income tax returns to understand the possible socio-economic concerns, and thereby whether there might be any illegal monetary transactions in the donor-recipient interaction.

Weeding out the fakes

Shingare said that about 5% of applications for unrelated donor transplantations applications are “fake”, meaning fraudulent. “Sometimes the patient gets his servant,” he said. If the blood group does not match, he gets the servant’s husband. We reject such applications.”

So, unrelated organ donation is usually looked at with cynicism.

Dr Sunil Shroff, managing trustee of Mohan Foundation, a nonprofit in Chennai that works on promoting organ donation, said that the section that allows unrelated donors is often abused. “Many a times the authorisation committee will overlook such cases sometimes sympathising with the recipient and clearance is given in what is clearly likely to lead to commercial transaction,” he wrote in a newsletter.

Jha too feels the air of suspicion needs to be cleared. “The mention of unrelated donor brings suspicion, as they are often commercial. I think a little bit of explanation is due.”

While Shingare said that it takes only a week or two to clear an application, other doctors said that it normally takes a month or two just to arrange the paperwork. Even for related donors, it may take up to two months for the surgery to get clearance.

If the donor is from a state other than the one where the surgery is being conducted, one needs a clearance from the donor’s home state authorisation committee as well.

Doctors and officials said that its possible that political influence pushes the paperwork to be done faster, a clear advantage for Swaraj. However, regular patients may struggle getting these documents.

The long wait

Take the case of 63-year old Bharatiben Bhanushali. The diabetic patient from Mumbai has been on dialysis since August. Her sister agreed to be the donor, but she said that she would not be able to undergo a surgery after December for family reasons.

The family started their paperwork in August. In November, they were told that all the paperwork had to be freshly submitted with colour photocopies where necessary. They also needed police verification, which Bhanushali’s husband, Suresh said was not easy to get.

“We were worried that we will not be able to get the surgery done in December,” said Suresh.

Only on December 13, after nearly four months of work, did the hospital authorisation committee clear the papers.

“You can imagine if it takes that long for a related donor, how long it could take for an unrelated donor,” said Dr Bharat Shah, Bhanushali’s doctor. “We do not encourage our patients to even try an unrelated donor.”

Deaths due to renal failure are rising in India. A study published in the Lancet in December estimated that the proportion of deaths due to renal failure to the total number of deaths has risen from 2.1% between 2001 and 2003 to 2.9% in 2010-2013.

The only cure for renal failure is a dialysis and eventually kidney transplant.

In India, unfortunately, there is a lack of cadaver donations in the country. Cadaver organ donation takes place when a relative of a brain-dead person agrees to donate his or her organs, which can be transplanted.

“There is a huge gap between the donors and the potential beneficiaries of organ transplant,” said Dr Vimal Bhandari, director of National Organ and Tissue Transplant Organisation. “We do not have the complete picture on how big the gap is, as only 150 odd of 301 centres that conduct transplantation are sending us data. We can vaguely say that we need over a lakh of kidneys, about 50,000 livers and 50,000 hearts.”

This year, there have been approximately 1,700 organs which has been donated by deceased donors. The states that are on top of the game when it comes to organ donation are Tamil Nadu, Karnataka, Kerala, and Maharashtra.

According to the Mohan Foundation, approximately 7,500 kidneys, 2,000 livers and 100 hearts are transplanted every year in the country. With relation to kidney transplantation, only 15% of transplants are cadaver transplants, said Shroff.

If enough cadaver organs were donated, there would be fewer live donors needed.

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