Why Are The Vast Majority Of Indian Organ Donors Women?
A living donor organ transplant is a remarkably altruistic and medically thrilling procedure. But there's a huge disparity between the number of male and female organ donors in India.
The year his daughter Sheena turned 18 was the longest year of Ramendra Nath Singh’s life. Although she had offered without being asked, Singh felt a strange weight descend, as if a rock had lodged itself in his chest clamping his breath and shrinking his appetite. She was a child after all, in the first year of engineering studies. When he took her to the hospital for tests, she was detected with jaundice; the doctors would not touch her until she recovered fully.
How long would it be? Singh felt guilty counting days like this. He had always said no to Sheena. But the day he vomited clumps of blood and the hospital in Ranchi struggled to treat him, and made phone calls to his doctors in Delhi, he felt afraid. He wasn’t ready to die yet, he realized, even if it meant taking his daughter’s liver.
Seven years earlier, Singh had been diagnosed with cirrhosis. For some years, the doctors treated him with medicines, and then advised a transplant. He registered with Vellore and Delhi on their cadaveric organ list. A cadaveric transplant is not easy—it generally requires shifting to the city of registration for an unspecified duration, so that you can rush to the hospital when an organ becomes available. It also requires money, patience (a lot of it), and, most of all, luck.
After the bleeding, Singh’s hold on the world suddenly felt slight, a thing of air and thread, and the lottery of the cadaveric list seemed too much of a risk. It would have to be a living donor transplant.
Even so, it was almost a year later that his transplant occurred. At first, he was grateful for the delay—perhaps someone else would come forward to donate. Would Sheena get married if they saw a large scar across her abdomen?But when fluid started to fill his abdomen, a condition called ascites, where the body is not able to filter out fluids adequately, he felt grateful that Sheena had offered her liver.In the stupor of the intensive care unit, his wife didn’t tell him Sheena had left to rejoin college just 10 days after her day-long surgery. She didn’t want to miss classes. Later, when he was moved to a ward and could tell day from night, he thought of what he owed her. But once he was outside the hospital hum of polite beeps and white light, it seemed impossible to say thank you. It seemed too little. And sometimes, too much.
A living donor organ transplant is a remarkable thing, both in terms of the thrilling medical science involved and the human capacity for giving. It involves separate surgeries on donor and recipient, coordinated like an orchestra performance, to check and harvest the organ from the donor, remove the bad organ from the recipient, and then graft the healthy one, alongside a thousand other things that must be checked and done right.Donors undergo major surgery, with no benefit to themselves, to gift one of their organs (or part of one, in case of liver transplants).
The liver can regenerate on its own, making it possible for people to donate up to 70 per cent of it. One kidney can pull the work of two.Over the past decade and a half, India has emerged as a hub for living donor organ transplants (LDOT) in South and Southeast Asia. In 2011, the country performed the second highest number of LDOTs in the world after the US, according to World Health Organization data.
In the absence of a national transplant registry, it is not possible to give a more recent figure. The current cadaveric donation rate is 0.67 per million, estimates C. E. Karunakaran, trustee, NNOS Foundation, formerly National Network for Organ Sharing. This means two deceased donors in a year per three million of the population. To compare, Spain’s rate is 34 per million of the population, the highest in the world. This is approximately 68 times the Indian rate, for a population that is four per cent of India’s. In other words, if there were no living donors, the chances of dying while waiting for an organ in India are pretty high.
Sheena (second from left), seen here with her family
The majority of living donors in India are women. I filed RTI (Right to Information) applications with four centres, and the data received for 2008–2017 shows that women constitute 74 per cent of kidney donors. For liver surgeries, the data I received was much more limited because these transplants happen almost entirely in private hospitals, which do not come under RTI. Here, women are 60.5 per cent of the donors, based on figures for 2009–2017 from five centres.
Globally, too, women constitute a higher proportion of living organ donors. But three things give cause for alarm here. First, the proportion of women donors is markedly higher here than in the US, which performs the highest number of LDOTs in the world. Plus, the number of female recipients is conspicuously lower. In the US, 35 per cent of liver recipients are women, as are 39 per cent of kidney recipients.
In India, the figures are 24 per cent and 19 per cent respectively. Second, transplant figures in the context of the country’s record on gender is worrying. In a 2017 United Nations Development Programme (UNDP) report on gender inequality, India ranked 125 among 159 countries. Third is the almost complete absence of data. Health data in general is inaccessible in India, difficult to get even through RTIs, but data on women and health, outside of child sex ratio, maternal mortality and fertility rate, is non-existent. It would appear that what happens to women—other than birth and birthing health—is not known or not worth knowing.
Last year, I found myself in the position of being a potential donor for my father’s liver transplant. When I walked into the transplant surgeon’s chamber one morning, he took me by surprise. He put my test reports aside and asked: “Are you under pressure to donate?”“No,” I said. “Why?”“In Indian families, women are often not asked but told to donate. If there is anything like that, I can give your family some clinical reason and reject you.”I faced no such pressure from my family. But being a potential donor is a curious pressure in itself.I found it hard knowing that a person’s life rested in my hands. There is the very remote but real possibility of death—the surgery carries a 0.5 per cent risk of death globally. That means one in 200 donors dies.
I found myself thinking guiltily about my own death more than my father’s imminent death without a transplant.I often thought of Sheena then. Did such doubts ever cross her mind? Or did she keep them aside when they came? Her father waved away my question. “How can anything go wrong when you do such a good thing?” he said. “And even if it does, you would have given life to those who gave life to you.” I looked, but found no such certitude. I was full of doubt, and full of shame. I found myself in a place where it was difficult to talk to anyone.
I thought I was the only one measuring the sum of my unlived years versus the certain death of my father in a few days. The surgeon snapped me alert to the women all around me, donors or donors-in-waiting. Wives, mothers, and daughters, but also sisters-in-law and daughters-in-law. It surprised me that so many women were permitted to donate. In a society where female bodies are policed like international borders, families seemed conveniently okay with women’s bodies being cut up—mostly by men and for men.
The Transplantation of Human Organs and Tissues Rules, 2014, permits related and unrelated persons to become living donors, but strictly for non-commercial purposes. The donor and recipient must prove their relationship and emotional closeness through documents and photographs.The process is simpler for “near-relatives”—grandparents, parents, siblings and children—and spouses. A woman may sometimes be grilled to check that she is indeed the wife and not an impostor. Some unrelated donors are approved if authorities are satisfied the donation is made for “reasons of love and affection”.
The men refused
It is entirely legitimate for daughters-in-law and sisters-in-law to donate organs, but “the question to ask is, are brothers-in-law and sons-in-law donating organs similarly?” says Dr Aabha Nagral, liver and liver transplant specialist at Jaslok Hospital in Mumbai and Apollo Hospitals in Navi Mumbai.When Nagral advised a liver transplant to one of her patients, he was flustered but hopeful one of his three brothers would be fit and willing to donate. Each brother declined. In the end, his wife’s sister donated her liver. “Even husbands donating livers to wives is unusual,” says Nagral.
Doctors say the reason for this disparity is economic. Men work. Women mostly don’t. According to UNDP, globally, women’s employment rate is 27.2 per cent, while for men it is 78.8 per cent. Women are also paid lesser than men. Thus, a man’s absence from work due to donor surgery is seen as more costly.
“Being a gynaecologist I only treat women. But I have noticed that compared to the number of women who come to be evaluated here as donors, it is striking how few women come here to be recipients,” says Dr Puneet Bedi, gynaecologist at Delhi’s Indraprastha Apollo Hospitals, a popular kidney transplant centre. Bedi has to evaluate their gynaecological fitness before the surgery.Recipient data makes the gender imbalance in transplant surgery even starker.
In India, women made up only 19 per cent of all recipients for kidneys and 24 per cent for liver. The stakes appear to be different when the recipient is a woman, says Prakash Saindane, transplant coordinator at Apollo Hospitals, Navi Mumbai.
In 2017, he and his team raised funds for the liver transplant of a two-year-old girl by applying to the Tata Trust, the chief minister’s fund and the crowdfunding platform Milaap. By November, the money was ready and the father was declared fit to donate. “The transplant took place eight months after the money was ready. Why? Because the mother, who was pregnant at the time, was made to undergo a medical termination of pregnancy, then they waited for her to recover and donate her liver instead. He did not tell us this; I learnt it later. I believe the father’s parents said their son should not risk the operation for a daughter; that the couple could try for other children.”
“I’ve noticed that the parents of a lot of young girls start the transplant work-up (a series of tests to evaluate health before surgery), start the paperwork and then don’t show up,” says Vibhuti Sharma, transplant coordinator, Institute of Liver and Biliary Sciences, Delhi. “Money for a transplant can be organized through charities and fund-raising, but it is the lifelong cost of immunosuppression (dampening of the immune system through medicines to ensure that the new organs are not rejected by the recipients’ bodies) and testing that is the problem. The reality is that there are many Indian families even today that will find this is not worth the investment on a girl.”
Interestingly, all the transplant coordinators I spoke with, those who agreed to be quoted and those who didn’t, viewed the gender skew in transplants as a problem, but not all the doctors did. Many doctors said women donate because they are inherently nurturing. A couple of them said that women tend to be fitter than men of the same age, and hence more able to donate. But that still doesn’t explain why the proportion of female recipients is so much lower.
This difference in perception might arise from the kind of work doctors and coordinators do—the latter are more privy to the human drama that a transplant entails. Doctors mostly aren’t.
The midnight call
When the call came from a Bengaluru hospital in September 2017, it was after midnight. Singh felt real fear, but did not share it with his wife. Instead, he asked her not to call their younger daughter but focus on packing. He booked tickets out of Ranchi, and when they reached Bengaluru, he found them a hotel near the hospital.
When they went to the National Institute of Mental Health and Neurosciences where Sheena had been admitted, she was lying unconscious, attached to many machines. The doctors said they had performed a surgery on her brain the night before, but were cautious about her prospects of recovery. Singh felt his hold on the world slipping away again, a flimsy wisp of thread holding a restless balloon. It all seemed to be happening at a great distance. They returned to the hotel. At 11 p.m. that night they got a call: Sheena was dead.
Singh learnt of the dinner plan much later—how Sheena and her friends at IBM had decided to celebrate their first salary cheque by renting a car and driving to a dhaba for dinner on the highway. The impact of the collision ejected Sheena from the car and she suffered a head injury. She was the only one in the group to die.The year that Sheena had donated her liver to Singh, his younger daughter had tied a rakhi on Sheena: She was seen as the true protector of the family. His wife had started consulting Sheena for most things: where her siblings should take tuition, family holidays, how to handle her diabetes.
In the days after her death, when their relatives came home, one of Singh’s brothers said they had given Sheena too much freedom.
Singh found himself agreeing with him. Had he given her too much independence? In the small hours of the morning, when everyone is asleep except his wife and him, his thoughts return inevitably to her. Sheena, his first-born. And he still wells up with anger. “I wanted to send her abroad to study. I was thinking of plastic surgery to conceal the scar. I had so many dreams for her. But she made bad friends, children get out of hand when they live by themselves, you know. This would not have happened if she was in Ranchi. I would never have allowed her out so late at night.”
Footnote: When I backed out, my mother donated her liver to my father. My father’s surgery was successful, and he is now in the 10th month of his new liver.
First published in The Hindu’s Sunday Magazine on 21 October 2018.