KOCHI: For quite a while, Suresh lived with the doctor’s diagnosis that diabetes has started affecting his kidneys. But he continued as usual, hoping for some miracle. Yet Suresh’s wife Anita noticed that his condition was worsening, food and water intake too was slumping. Medical examinations showed his kidneys failing, and the solution was a transplant.
From then began the relentless wait for a donor. “Our kids were young. And mine was not a match. When the situation became urgent, we looked for a donor. Finally, we found a man who was in need of money and was willing to donate. We had to pay him Rs 7 lakh,” says Anita, who, however, reassured that all the administrative protocols were followed to the T. “Just that the money transaction was done discreetly.”
She and her husband are well educated, and know about the Transplantation of Humans Act (1994), later amended in 2014, includes provisions that strictly prevents commercial dealings in transplantations.
“That is in paper. On the ground, no one will come forward to part with their organ for nothing,” she says, adding she had approached the donor through “someone who knew his monetary requirement”.
World over, organ donation follows the strict regime of no monetary transactions, and focuses more on the deceased. Countries such as the US, China, Brazil, France, Spain, and Italy records organ donation from deceased donors at (in percentage) 84.5, 83.1, 94.5, 90.11, 93.22, and 90.2, whereas in India, it is just 13.2% of the total count. Yet, as per the National Organ and Tissue Transplant Organisation, within the country, the deceased donor number has seen a rise — 96 more donations in 2023 compared to 941 in 2022.
“In an ideal situation, the number of deceased donors should be more than live donors, and recent studies have proved that the rate of success and survival is the same in both,” says Dr Noble Gracious S, executive director-cum-member secretary of Kerala State Organ and Tissue Transplant Organisation (K-SOTTO).
But the Kerala statistics are starkly different, as was also flagged by the Health Minister in the Assembly recently. From, 2019 to 2023, the numbers have seen a steady slump (except in 2020, when it was 7.6%), from 5.25% to 4.36%. This implies the number of live donors are disproportionately high, which in turn hints at commercial transactions. The latest reports of middle men being involved in live donors being flown to Iran (where compensation is legal) is another testimony of the malpractices involved in the system.
As per the rules, live donor donations have to be scrutinised by a District Level Authorisation Committee to ensure the transplant is entirely for altruistic reasons. But beyond the formalities, there is no mechanism for the committee to check if there is money involved. “To think that people would donate to a stranger for altruistic motives is slightly far-fetched. We did try to set up a mechanism in 2017 where such donors could register for donation, but none came forward. Money is a stark reality of live donations, and Iran legalising it has invited severe criticism from the transplant community,” Dr Noble says.
The announcement of the state government hence to improve the deceased donors scenario has invited good cheer from the medical fraternity, who feel if this works well, the big business of live donorship where middlemen become the real beneficiaries could be curbed to a large extent.
“There is a need for awareness. Some in the field do not even know about the two types of organ donations — live and deceased persons. So imagine the public. Also, there are other hiccups in promoting deceased organ donation,” says Dr Sulfi Noohu, former Indian Medical Association state president.
One hiccup mentioned by medical professionals is the reluctance in declaring the brain death of a prospective donor. The rules followed are as per the 2020 guidelines formulated by an expert committee that stipulated repeated tests on the patient in intervals of six hours by a panel of four doctors, including a doctor empanelled by the appropriate authority. One doctor would have to perform the tests and the others to witness and interpret the results.
However, even drawing up such guidelines have not paid much results, data reveals. “There is an apathy by the doctors towards declaring a brain stem death in an ICU, leaving no opportunity for the kith and kin even to ponder a possibility of donorship,” says Dr Noble.
“The number of litigations foisted on the doctors with allegations of conspiracy is what dissuades them. There were such cases some years ago, and though most of the cases were quashed, the fatigue of fighting the cases is what prompts them from going for the certification. The doctors feel that why they should take on the onus when their job is just to certify, after which the entire transplant process will be taken over by the Kerala State Organ and Tissue Transplant Organization (K-SOTTO),” he says.
“Government’s support is hence very imperative for the doctors and for the system to work well. In Gujarat, this has paid off where 40% of the transplants are in the government sphere and is free.
In Kerala, of the 1,000-odd transplants per year, below 50 are in the government set-up,” Dr Noble says. The decision of the government to promote deceased donorship hence should keep in mind all these state-of-affairs, says Dr K Sudarshan, chairman of IMA’s suicide prevention project for doctors.
“Qualified persons should be involved in the process and institutions such as IMA should be pooled in. Also, the doctors should be given support when it comes to brain death certification, for which a review board of experts from walks of life other than medical practitioners could be involved. That way, the doctors won’t feel singled out,” he says.
Dr Noohu suggests the ‘opt-out’ methodology that is followed in several countries as one of the ways to increase deceased donorship.
“We must be able to take organs from any dead person, and those who do not want that could declare so, rather than the other way round. This would help reduce the live donor issue to a great extent.”
Also, taking better care of the families of deceased donors is important. Job reservation or educational incentives could be extended to the kin of the donors, encouraging more people to go in for such donations.
These technical glitches apart, the misinformation and myths floating around also need constant redress, says Dr Sudarshan.
“There are cases where the families of the person who wanted to donate have opposed when we went to retrieve the organs. There are also instances when donors had to be sought from places like Hyderabad for liver transplants.”
Socio-cultural issues also need some focus, experts say. There have been some changes after media reports came out on deceased donor donations such as of advocate Neelankanta Sarma, whose kidneys and heart were transplanted after he was declared brain dead in 2015. “I was very clear on the transplant option because my husband was a person who wanted such acts to be done. But I was also wary of how my children would take it. The social pressure was there. But there were also relatives who stood with me. Now, even after so many years, when I see the person who is full of life with the heart that my husband gave, I feel gratified,” says Latha Sarma, wife of Neelakanta Sarma and deputy director in the agriculture department.
There are religious issues as well, with some claiming an ‘incomplete body’ would not be fit for burial or cremation. “But even countries where such religious laws are stringent are going for transplants. This should be brought about in the awareness classes,” says Dr Noohu.
The awareness being planned by the government should not be an eyewash and should include even youngsters, as there should be a culture of such sharing that should be inculcated in the social fabric, says Dr Sudarshan.
“For this, awareness programmes should include voluntary organisations and medical fraternity to a large extent.” Sharing is usually done based on trust, and trust is what should be built, he says.
STARK REALITY
World over, organ donation follows the strict regime of no monetary transactions, and focuses more on the deceased. Countries such as the US, China, Brazil, France, Spain, and Italy records organ donation from deceased donors at (in percentage) 84.5, 83.1, 94.5, 90.11, 93.22, and 90.2, whereas in India, it is just 13.2% of the total count.
(some names changed)