India’s organ transplant paradox: World no. 2, but most are living donors

Last year, the nodal authority National Organ & Tissue Transplant Organisation (NOTTO) decided to submit data on organ transplants from hospitals in India to the Global Observatory on Donation and Transplantation.

Except no one expected India to pretty much top the list in organ transplantations—second only to the US. Not private hospitals, and certainly not the Indian government.

Vasanthi Ramesh, a doctor and the director of NOTTO, had hoped that the data would get more Indians to pledge to donate organs. And she was not disappointed. In November 2019, an organ donation drive in India led by insurer Edelweiss Tokio Life broke the Guinness World Record for pledges in a single day. It managed 54,626 pledges, managing over 100,000 in total over the course over the same month.

Promising as the pledges may be, India’s organ donation rate is still pretty low. Even as pledges grew rapidly from 9,000 to over 1.5 million in the past two years, the rate is abysmal—under 0.5 organ donors per million people. This stands in stark contrast to figures from other countries: 30.7 in the US and 43.6 in Spain, for example. Further, while India sees close to 150,000 brain deaths a year, only about 900 deceased donations happened last year.  

Ultimately, those in need of organs don’t get them. An estimated 500,000 Indians die every year due to this reason.

The processes for organ transplantation in India are bleak at best, said the head of the organ transplants department of an Indian hospital chain on condition of anonymity.

For one, the majority of organ donations in India are done by the living, as opposed to retrieving organs from the dead. This may sound like an endless stream of kindness, but it’s often a case of organ harvesting for commercial gain

Gender discrimination

More Indian men receive donated organs and more Indian women tend to donate organs. In the US, women constitute 62% of kidney donors and 53% of liver donors. In India, 74% women donate kidneys and 60.5% donate liver in India

Most Indian states lack the resources to retrieve organs and make them available for transplants —in which case organ pledges don’t mean much.

In a country that has earned the dubious distinction of being the kidney bazaar of the world—dominated by living donations by the poor for money—NOTTO’s objective is to increase the number of deceased donations. This also makes sense for hospitals—transplants are a great revenue stream. Heart and lung donations, which can only come from the deceased, can improve hospital earnings considerably. While a kidney transplant could earn a hospital up to Rs 5 lakh ($7,022); with lung, heart or liver, this amount can go up  to an estimated Rs 35 lakh ($49,159).

According to a former surgeon with Gurugram-based Medanta’s organ transplant department, the transplants helped create a new revenue stream for the hospital. “Once we started doing about 10 transplants in a month, apart from adding about Rs 2.5 crore ($351,139) a month to the topline, we started attracting several liver patients. And three out of 10 need transplants, with the rest [going to] other departments like cardiology, etc.” A complex surgery like a transplant requires long-term follow-ups, aftercare, and a steady stream of medicines. All of these help hospitals remain financially viable.

But to get that revenue stream up and running, hospitals need to be equipped to handle transplants. And this is where state support often comes in. While south Indian state governments and hospitals have made progress, north India lags behind.

The north-south divide

Nineteen. That’s the number of bodies donated for organs in the National Capital Region (NCR) in 2019. This, despite it being one of the major hubs of super specialty hospitals in India. All told, India sees around 875 deceased donations across the country—dominated by south Indian cities such as Bengaluru, Chennai, Hyderabad and Kochi, which have hospitals with the capability to retrieve organs.

Even then, Medanta claims to be the largest centre for conducting liver transplants in India, with 300 liver transplants conducted in a year. Apparently, the second largest in the world. 

The ex-Medanta surgeon said that till about eight years ago, the highest Medanta could charge for a surgery would be up to Rs 5 lakh ($7,022). But transplants changed that. Liver transplants, especially, necessitate purchasing drugs from the pharmacy to the tune of Rs 7-8 lakh ($9,831-$11,236). And these come with high margins.

Medanta’s liver transplant department, with about 50 surgeons, brings in about 5% of its total revenue. Medanta earned Rs 1,506 crore ($211.6 million) in revenue for the year ended March 2019. This can be chalked up to the entry of Arvinder Singh Soin, a pioneer in liver transplantation, who also set up one of the world’s largest liver transplant centres at Sir Ganga Ram Hospital, Delhi. Dr Soin’s training coupled with Medanta’s robust team and resources led to the clinical outcome of 90%  of patients surviving beyond a year post-surgery, said the ex-surgeon. 

Medanta pulled this feat off because of one other reason. 99% of organ donors were living, shared the ex-Medanta surgeon.

Today, Medanta’s liver transplant programme, though successful, is stagnant. “We were doing 200 liver transplants in 2011, then slowly moved to 300, but due to competition from half a dozen centres in Delhi/NCR, Medanta lost its advantage,” the surgeon said.

The stagnation points to a larger gap in organ transplants in India. Kidney transplants, once rare, are now conducted across hundreds of hospitals in India. Dozens do liver transplants. Only a handful, though, are equipped to do heart and lung transplants at scale, the surgeon said. And these require deceased donors—something north Indian states fall short on. “How will hospitals like Delhi-based Fortis Escorts and Medanta grow their transplant departments to include heart and lung transplants when only about 1-2 average deceased donations happen every month?” asks Avnish Seth, a surgeon and the Director of Fortis Organ Retrieval Transplant, rhetorically. Seth is also part of the apex technical committee at NOTTO.

No surprise then that despite Medanta founder and chairman Naresh Trehan’s long-standing desire to begin heart transplants, the hospital wasn’t able to conduct a single heart transplant until April 2018.

Contrast this with Gleneagles Global Hospitals’ success with lung transplants. According to a consultant with the hospital chain, Gleneagles has earned up to 30% of its revenue from organ transplants—primarily transplants from the deceased. And it got investor attention, too. Malaysia-based healthcare group IHH acquired a 73.4% stake in Gleneagles Global’s parent company for Rs 1,284 crore ($180.3 million) in 2015.

Training grief counsellors

Not-for-profit Mohan Foundation has trained the largest number of grief counsellors in India. Over 2700 trained grief counselors tend to find employment with hospitals as transplant coordinators who talk to the families of brain dead patients

Gleneagles has conducted over 100 heart and lung transplants since 2012. The chain, the consultant said, has a geographical benefit. Its hospitals are spread across Chennai, Mumbai, Bengaluru and Hyderabad, where the state governments promote deceased organ donation. They’ve also priced double lung transplants higher than any other surgery at Rs 30-35 lakh ($42,136-$49,159).

Fortis in Chennai, meanwhile, conducts 60% of the 250-odd heart transplants conducted annually in India, Seth claims. According to Fortis’ annual report for the year ended March 2019, organ transplants—113 liver and 54 kidney transplants—conducted at Fortis Noida would have contributed an estimated Rs 31.2 crore ($4.4 million)—or over 10%—to the total revenue. This is disproportionately high since Fortis Noida has about 20 specialties.

Transplants are good business. And hospitals are doing everything to increase the numbers for deceased donors.

An organ business network

A consultant who carried out extensive primary research on the business model of the organ transplant business in 2016 found that some hospitals in Hyderabad figured out a way to harvest organs like hearts and lungs. They have a network of nursing homes. This, when coupled with the deceased donors that are tracked and allocated by the State Organ & Tissue Transplant Organisation (SOTTO), allows for a steady supply of organs.

About 900 hospitals are licenced across the country to retrieve and/or conduct organ transplants with SOTTO’s help. The number of organs allocated to each hospital under the law are limited. 

A liver transplant surgeon, who had worked with Apollo hospitals in Chennai, corroborated that hospitals tend to have their own networks to increase the number of available organs for transplants. In fact, a major hospital chain, he said, had considered a public-private partnership (PPP) with government-funded hospitals to gain access to ‘brain dead’ patients who can help donate organs. However, the PPP didn’t pan out.

India has come a long way since the 1980s when it was the hub of transplant tourism & commercial transplants, says Vivekanand Jha, executive director at Delhi-based The George Institute for Global Health. With the passing of the landmark Transplantation of Human Organs Act, 1994, all commercial transplants were outlawed. There was a significant fall in the number of commercial transactions after the enactment of this law, he said, though there continue to be instances of violations of the law. There is, he adds, a need to develop an ethical and equitable organ donation program.

This is what NOTTO has been working on.

There are various considerations that go into deciding who gets an organ from a deceased organ donor. Sandeep Attawar,  a senior heart transplant surgeon at Global Hospital, Chennai, explains this process of decision-making with a real-life example. 

On 16 January, he narrates, a call went out across 4-5 centres in Bengaluru. There was a deceased donor. “Everyone checked if the blood group of the donor matched with those waiting to receive organs. Who is the person waiting the longest? They get the first offer. Then there can be size or weight mismatch. There could be several medical reasons to refuse. A patient may refuse an organ because it could be an inauspicious day for transplant,” he said.

The allocation criteria for a donor is not set in the national law, said a senior executive consulting with SOTTO, requesting anonymity. The allocation criteria is decided among stakeholders, including representatives from the state government—since health is a state subject—as well as private and government hospitals that are licensed to conduct organ retrieval and transplants along with NGOs. And there is a lot of push and pull in deciding who gets the donated organ, he added.

For instance, in Tamil Nadu, some hospitals complained against others for abusing a ‘supra urgent’ option available to jump the line. Last year, the Tamil Nadu government removed the option, he told The Ken. More recently, the state is also facing heat for allegations that authorities allowed a foreign national to receive a donated heart over Indian patients. Similarly, he added, in Maharashtra, the committee that oversees the allocation of organs has received requests from politicians to prioritise their ‘kith and kin’ over others waiting for organs. “Hanky-panky can happen by the government, politicians or for-profit hospitals. The role of the committees in the state is to keep a check on everyone to ensure vested interests don’t rule allocation,” said the consultant with SOTTO.

For successful organ transplants, various hospital departments need to work like clockwork. Ethically, and in tandem. Beyond surgery, there’s also the need for other areas like blood blank, infection control and immunology.

Not every hospital gets that balance right. Which is where training becomes imperative.

State support makes all the difference

NOTTO’s next steps, Ramesh says, is to promote awareness by training surgeons—anaesthetists and intensivists—those who are authorised to declare a patient brain dead. In 2019, at the Congress of the Asian Society of Transplantation in Delhi NCR, NOTTO conducted a training for 20 surgeons for retrieval of organs, and another training for doctors to lead transplant coordination. Ramesh believes that Delhi/NCR falls behind because not enough cases of brain dead patients are declared on time.

However, improving this requires government support. And they’re often not supportive, said a social worker, requesting anonymity. She works for an NGO that is represented in the Maharashtra committee that oversees the allocation of donated organs. According to her, Maharashtra overtook Tamil Nadu for the first time in deceased organ donations in 2019 because it trained  intensivists to identify brain death. They carried out certifications, and the numbers of organ donors went up. 

The Tamil Nadu government has enforced a protocol to let the families of road accident victims, who have been declared brain dead, to agree to donate organs. One of the reasons, she said, that Delhi/NCR has been unable to increase deceased donors is because the police, forensics and government hospitals are not in agreement. 

What is death?

A surgeon, Dr S Ganapathy, filed a case in the High Court of Kerala in November 2016 arguing that unlike most countries in the world that follow the concept of “whole brain death” (defined as irreversible loss of consciousness and irreversible loss of capacity to breathe due to loss of function of the whole brain), India follows “brain stem death” for economic reasons

Besides, most health insurers, including the national government health schemes like Ayushman Bharat, do not cover organ transplants. Some states like Tamil Nadu, in contrast, cover organ transplants partially under the state health scheme. “Health insurers do not have to listen to us,” said Ramesh, but to improve access, she is planning to conduct organ transplant training for doctors in government hospitals.

It’s not the only set of people she needs to make aware. The idea is also to make organ donation a non-taboo living room conversation in India. “If people would be more comfortable talking about organ donation, it would make it easy for a transplant coordinator or a doctor to ask the relative for organ donation in the event of brain death. Right now it is very hard for people to talk to relatives about organ donation,” she said.

In the meantime, NOTTO is committed to transparency. It aims to collect data from hospitals on how successful organ transplants are.

Though Ramesh admits that NOTTO does not have “any teeth” to get hospitals to publish clinical  outcomes for organ transplants, she can try requesting. Tamil Nadu, for one, has started the data collection process. 

For organ transplantation rates to go up, though, the rest of the country would now need to follow suit.

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