Urmila Pachkar spends roughly 12 hours each week strapped to a dialysis machine. She travels three times a week for dialysis to a centre 12 km from her home. She will turn 31 in August, but her sallow cheeks and bony form give her the appearance of a teenager.
In 2013, Pachkar was diagnosed with chronic kidney failure, a condition in which the organs, each the size of a coffee mug, are no longer able to filter blood, remove waste from the body, and maintain fluid balance.
Her life now depends on someone else’s death: today, Pachkar is one of 3,375 individuals in Mumbai who are waiting for a new kidney. “It has been seven years now,” Pachkar says, referring to the time since she registered herself for a transplant.
Under Indian law, an individual can receive a kidney, or part of a liver, from a living family member or friend. They can also receive these organs from a deceased donor, called a cadaver donor. (Certain organs, such as the heart, lungs, bowel, intestine, or hands, can only be transplanted from cadaver donors.)
In Pachkar’s case, no one in her family matched her blood group. So, she registered for a cadaver donation.
Cadaver donations are only possible in the specific instance that the donor suffers a brain death – a condition in which the brain stops working even as other organs are fully functional. This can occur due to a stroke or massive head injury, such as from a traffic accident or fall. In such cases, if a patient is kept on an external life support system even after the brain dies, the heart continues to pump blood to all organs. If the individual is healthy, their organs remain fit for donation after death.
Brain deaths could account for a substantial number of donations in India. The country sees over 8 million deaths annually – of them, an estimated 1%, or approximately 80,000 cases, are brain deaths. And yet, government data accessed by Scroll shows that over the past three decades, for any given year, the number of deceased organ donors in India has never exceeded 1,000, or 1.2% of potential donors.
Unlike Pachkar, Prema Ram managed to obtain the organs he needed: in February, he underwent a bilateral hand transplant at a private hospital in Mumbai. But another worry renders his nights sleepless – a debt of Rs 12 lakh to clear in the hospital before he returns to his home near Ajmer, Rajasthan. Ram, who is 33 and from a farming family, has now made a temporary home in a lodge in Mumbai. He hopes to crowd-fund the money he needs to pay off the bill.
The stories of Pachkar and Ram, both of whom are unable to work, and dependent on family incomes, are revealing of the crushing burden that the poor in India carry if they need or undergo cadaver organ transplants. Pachkar registered herself in a government hospital to obtain a cheaper transplant, but as a result, faces an indefinite wait for an organ. Ram registered in a private hospital, and more easily got an organ, but now has a massive hospital bill to clear.
Experts that Scroll spoke to noted that government hospitals could significantly improve this state of affairs, by smoothing out the complex process of getting permission for and carrying out transplants from deceased donors. But public hospitals across the country, they said, have shown poor participation in organ transplant programmes.
Dr SK Mathur, a member of several advisory committees on organ transplantation in the Centre and Maharashtra, said, “I have recommended to the national task force and written to the Prime Minister that to make transplants affordable, each state must have at least one designated transplant centre.” His recommendation has not been implemented.
In the absence of an efficient system in place to ensure transplants from government hospitals, across India, many die waiting for an organ.
Data from the National Organ and Tissue Transplant Organisation is revealing of the wide gaps between those in India who need organs, and those who receive them. Around 1.8 lakh people suffer from renal failure every year, but only 11,423 renal transplants were performed in 2022. Between 25,000 and 30,000 liver transplants are needed every year, but only 3,718 were performed that year. Around 50,000 heart failures are recorded, but only around 250 heart transplants were performed. In the case of corneas, about 1 lakh are needed every year, but only around 25,000 were performed that year.
I met Pachkar in her home on a baking hot March afternoon. She lives in a one-room house in Shivaji Nagar, a slum in India’s financial capital, Mumbai. The room had no windows and was lit only by a flickering tube light.
In one corner was a large faded blue container filled with water for daily chores; next to it, a narrow black platform that served as a kitchen space.
At night, Pachkar occupies the lone cot near the entrance. The rest of her family, including her grandmother, mother and brother, sleep on the floor in the leftover space between her bed, an old steel cupboard and the kitchen platform. Her father died in 2021 from kidney failure.
That afternoon, Pachkar’s mother was out working. Her grandmother and brother sat cross-legged on the floor. Pachkar’s medical reports were spread on the cot.
She pointed to a file from 2016, when she registered herself in the waitlist for a kidney transplant in King Edward Memorial, or KEM Hospital, a super-specialty government hospital in Parel.
Government hospitals like KEM remain the only option for many poor in the country, who cannot remotely consider paying for a transplant at a private hospital. At a government hospital, a kidney transplant typically costs Rs 5.25 lakh, a liver transplant Rs 9 lakh, a heart or lung transplant Rs 25 lakh, and a transplant of both hands, Rs 9 lakh.
Meanwhile, in private hospitals across the country, the transplant cost for a kidney is between Rs 9 lakh and Rs 12 lakh, for a liver Rs 25 lakh, a heart or lung between Rs 35 lakh and Rs 40 lakh, and for a hand, between Rs 25 lakh and Rs 30 lakh.
At KEM Hospital, Pachkar was assured that her transplant would cost her Rs 1.5 lakh, to cover medicines and post-operation tests, and that the rest of the expense would be borne by the government. When she registered, she was told her turn for a transplant would come in six years.
A helpless desperation clouded her eyes as she looked at the medical files. “I am still waiting,” she said.
In the meanwhile, doctors said, she had to undergo dialysis thrice a week to survive. Private dialysis costs between Rs 1,000 and Rs 5,000 per session, and Pachkar needs 12 sessions every month. Pachkar’s mother, Usha, earns Rs 3,500 per month as a domestic worker. Her brother, Vinayak, works in a restaurant and adds Rs 12,000 to the household kitty. It was impossible for them to cover the cost of her dialysis. So, Pachkar found a charitable centre run by the Siddhivinayak temple trust 12 km away from their home, which provides dialysis services at a concessional rate of Rs 250 per session.
That meant a long commute. Initially, Pachkar would take the local bus to and fro. In her free time, she began to learn sewing, thinking she would stitch clothes at home to try earn some money.
But in 2020, during one of her bus rides, she fell and cracked her femur bone. Her doctor told her that her bone was brittle. Chronic kidney failure is known to cause calcium and phosphorus imbalance, and calcium deficiency affects bone strength.
After the accident, Pachkar could not risk using public transport, and was forced to begin taking a cab to the dialysis centre, which cost Rs 700 each day she travelled. It also meant Pachkar could no longer sit for long hours at the sewing machine, thus ending her hopes of earning some money to support her family. Now, on days when she does not have dialysis, she whiles away her time, lying on the cot and staring into her mobile screen.
“We are just waiting for her surgery,” her grandmother said. “Then she can also earn.”
For Pachkar to obtain a kidney, the hospital will have to go through an elaborate procedure, which begins with identifying a brain dead donor.
“Once a patient is below 5 on Glasgow Coma Scale, the doctor knows that the patient may suffer brain death,” said Sujata Ashtekar, a consultant with the west zone of the Regional Organ and Tissue Transplant Organisation, or ROTTO, which manages organ exchange in six western states of India, including Maharashtra. The Glasgow Coma Scale is a clinical classification of how conscious the brain is.
At this point, Ashtekar said, “An intensivist or anesthetist has to maintain that patient. By maintain, I mean maintain their electrolyte balance, sodium levels, body temperature, and most importantly, ensure that the heart continues to pump.” This is done using a life support system. Ashtekar explained that if these medical parameters are not maintained, the brain may slowly die, leading to a shutdown of organs one by one, starting with the heart.
The stark difference between the public and private sector in transplant procedure is apparent at this first stage. An official from Maharashtra’s State Organ and Tissue Transplant Organisation, who requested anonymity, said, “In a private hospital, a doctor will monitor a patient’s parameters round the clock. A dedicated nurse may be stationed.”
The official added that in a government hospital, “no doctor or nurse has time to maintain these parameters in a brain dead patient, when there are several others critical and in need of their attention.”
KEM Hospital, for instance, handles an outpatient load of 1.8 million patients and records 85,000 admissions annually.
Government doctors also struggle with a shortage of ventilators. “Most doctors would want to use the ventilator to save some critical patient’s life,” said Dr Vatsala Trivedi, retired professor and head of the urology department in Mumbai’s Lokmanya Tilak Municipal General Hospital. “They do not think that the brain dead patient’s organs can also save multiple lives.”
In most cases, officials in Maharashtra’s SOTTO confirmed, a brain dead person eventually suffers a heart attack and becomes ineligible to serve as an organ donor.
Jaya Todankar, a state-government-appointed transplant coordinator, has worked in several government hospitals in Mumbai – specifically, KEM, JJ Group of Hospitals, and Lokmanya Tilak Municipal General Hospital, to train staff in organ transplant procedures. “I would daily take rounds in intensive care units,” said 38-year-old Todankar. “On an average, we would find a brain dead case every day.” But despite identifying a potential donor almost every day, in her 18 months in the three different hospitals, Todankar was able to ensure the donation of just one person’s organs.
“Hospitals just weren’t interested,” she said with a sigh.
She recounted that upon identifying a candidate, she would immediately inform the hospital’s transplant coordinator and on-duty doctor. It would then be the doctor’s responsibility to inform the anaesthesia team. Following this, a team with a neurologist, anaesthetist, intensivist, nurses and treating doctors would have to maintain the patient’s vital parameters.
Most often, she said, government hospitals would falter here. “Maximum times, medical parameters were not closely monitored,” she said. “Potential donors were lost.”
Santosh Sorate, a transplant coordinator in a private hospital in Mumbai, explained that for a successful transplant, senior doctors and staffers have to work beyond their usual hours, sometimes for two days at a stretch, to first retrieve and then transplant an organ. “Even if one department is not interested, cadaver organ transplant is not possible,” Sorate said.
Dr SK Mathur, who is also a liver transplant surgeon and former professor of surgery in KEM Hospital, noted, “The senior doctors and department heads have to be motivated to drive organ transplants. It requires coordination between various departments. That is perhaps not happening.”
KEM Hospital declined comment for this story.
Requesting anonymity, an official from Mumbai’s Zonal Transplant Coordination Centre, which oversees transplants in the city, noted that many government doctors are unenthusiastic about working on transplants because “there is no financial incentive for a transplant for them.” In contrast, private doctors “earn lakhs as consultation fees for transplant”.
A transplant coordinator from a private hospital in Mumbai told Scroll that from one donor, if four to five organs are transplanted in patients waitlisted in the same hospital, the hospital stands to earn over Rs 1 crore. “Even if the profit margin is 50%, that is Rs 50 lakh in one day from one donor,” the coordinator said.
Mathur said the actual cost of a transplant is not astronomical. “Private hospitals have huge profit margins,” he said. “They charge for consumables, doctors, hospital bed and intensive care. However, public hospitals can do liver, heart or lung transplant much cheaper if they develop their facility.”
Mathur said that currently only a few government hospitals in India were regularly identifying potential organ donors and counselling their families: among them, the Post Graduate Institute of Medical Education and Research in Chandigarh, Institute of Kidney Diseases and Research Centre in Ahmedabad, the AIIMS Trauma Centre in New Delhi and the Madras Medical College in Chennai.
Usually, government hospitals also do not effectively counsel families of patients to secure their permission for the donation. “Asking a grieving family to donate organs of their loved one is challenging,” said Sorate, the transplant coordinator in a private Mumbai hospital. “And it requires solid training. We have to spend hours with them.” For every five families that Sorate counsels, he said, only one or two grant permission for transplants.
Under the Transplantation of Human Organs Act, 1994, a hospital that is licensed to conduct transplants must have at least one transplant coordinator to counsel families and facilitate organ transplants. Some private hospitals have three or four such dedicated posts, while most government hospitals assign this job to an already overburdened social worker. As a result, the coordinator cannot dedicate enough time to each grieving family to gain their trust.
In KEM Hospital, social worker Shambhudev Dalvi serves as a transplant coordinator and also helps urology and nephrology patients arrange funds for their treatment. He explained that his schedule is so packed that when the hospital has a brain dead patient, he struggles to find time to properly counsel the family and convince them to donate an organ. He said that he alone “cannot make things happen”.
When the family of a brain dead patient agrees to donate the organs, the hospital conducts a clinical analysis to confirm brain death. It then informs the local body in charge of organ transplants.
Maharashtra has four Zonal Transplant Coordination Centres, or ZTCCs, in Mumbai, Pune, Nagpur and Aurangabad, that function under the State Organ and Tissue Transplant Organisation, or SOTTO. These bodies maintain lists of patients waitlisted in different hospitals that they oversee. The list takes into consideration a “score”, that is calculated based on the severity of a patient’s condition and the duration that they have been waiting for an organ. A patient with a higher score is placed higher on the waitlist.
Indian law rewards hospitals that find donors: in deciding on an organ recipient, the government gives first priority to waitlisted patients of the hospital that persuaded a deceased person’s family to donate their organs.
If the donor hospital has no compatible patient for any of the organs, they are then made available to those registered in other hospitals in the city, then to patients in other hospitals in the state, then neighbouring states, and finally, to patients on the national wait list.
Maharashtra government hospitals’ failure to coordinate transplants is evident in data from the State Organ and Tissue Transplant Organisation. Since 2013, Maharashtra has recorded 997 cadaver organ donors. Of them, 959 were from private hospitals and only 38 were from government hospitals.
In Mumbai, there are 43 hospitals registered for transplants, of which five are run by the government. Out of the five, four have not recorded an organ donation in two years, data accessed by Scroll shows. The last donation from a government hospital was from JJ Hospital in early 2021.
Unsurprisingly then, the average wait time in a government hospital in Mumbai for a cadaver kidney transplant is significantly higher than in a private hospital. Scroll obtained the names of the top ten performing hospitals from the city’s zonal committee, of which nine were private hospitals and one was run on a public-private partnership. We contacted the hospital coordinators to ask about the average wait times for a kidney patient – for private hospitals, on average, it was less than four years. In contrast, the average wait time at the four government transplant hospitals in the city was more than eight years.
“If she was registered in a private hospital, she would have got a kidney donation by now,” Pachkar’s brother Vinayak said.
Dr Sujata Patwardhan, director of the regional transplant body that oversees Maharashtra, told Scroll that the organisation had sent emails to all hospitals that were performing poorly when it came to ensuring transplants, to urge them to improve.
The long waiting period is not the only problem. Pachkar’s family is yet to save up the Rs 1.5 lakh that they will have to pay KEM Hospital for medicines and follow-up tests once her surgery is finalised. For a decade, Pachkar’s mother Usha saved money. But in 2021, she exhausted her savings to pay for treatment for her husband, who died of kidney failure the same year.
Usha is now saving from scratch. “I don’t know how to arrange so much money,” she said. Whatever she earns is devoured by Pachkar’s dialysis, transport and medicines.
As of April, Pachkar was eighth on KEM’s waiting list.
The first organ transplant in India was conducted in 1948 – Dr RES Muthiah, an ophthalmologist, transplanted a cornea from a deceased donor to a recipient in a Chennai hospital. The first attempted transplants of other major organs occurred only two decades later, in KEM Hospital.
When India passed a law to regulate organ transplants in 1994, Dr Vatsala Trivedi was heading the department of urology in Lokmanya Tilak Medical College, attached to a municipal hospital. “It was not the age of the internet or mobile phones,” Trivedi said. “It took almost a year to get copy of the law.”
Trivedi was determined to teach medical students about organ transplants, and encourage her colleagues to begin working on them. She began researching medical literature, made dozens of photocopies of the law, and approached every department in LTMG Hospital to educate them about organ transplants.
But doctors were fearful of stepping into unknown territory. “I went to every department,” she said. “The law was new. Many didn’t want to enter what was largely unregularised.”
Trivedi persevered. She began training nurses and doctors on the protocol to follow. “There wasn’t much of a protocol then,” she said. So she compiled information on best practices to follow once brain death was inevitable, and how to talk to a family afterwards.
Through 1995 and 1996, Trivedi said, the team of doctors in LTMG Hospital identified 12 brain dead patients, but failed to convert them into donors. “We would fail to maintain the patient’s medical parameters necessary for a transplant,” Trivedi said. “Sometimes the family would not agree. It was a struggle.”
At the time, across India, only a few hospitals, such as the Apollo Hospitals in Delhi and Chennai, All India Institute of Medical Sciences in Delhi, and KEM Hospital in Mumbai, were experimenting with organ transplants from brain dead individuals, largely unsuccessfully.
On March 27, 1997, doctors in LTMG Hospital identified a potential donor: a 46-year-old man who had suffered a head injury after a road accident. This would be their thirteenth attempt to get an organ donor. Trivedi met the man’s son, and persuaded him to donate his father’s kidneys. “He had a lot of questions,” Trivedi said. “We answered them all. Eventually, he was convinced and agreed.” Meanwhile, an intensivist maintained the donor’s parameters, ensuring that the heart continued to beat, and that the body temperature remained normal.
Trivedi first removed both kidneys, but the hospital found only one patient in need of a transplant. They decided to restore the second kidney to the body. The transplant surgery into the recipient lasted for 36 hours.
This marked the first successful kidney transplant from a deceased donor by a government hospital in India. The recipient lived with a functioning kidney and did not require dialysis after the transplant, Trivedi said. Buoyed, the hospital convinced three more families to donate organs of deceased relatives that year. In the years between 1997 and 2002, the hospital identified 200 brain dead donors – of them, 12 donated their organs.
Trivedi herself oversaw 22 kidney transplants at LTMG Hospital during this same period. She retired in 2004 and was made part of multiple government committees on organ transplants, including the standing committee in Parliament in 2014, which suggested amendments to the original transplant act of 1994.
The science has progressed, the process has been simplified, and awareness on organ donation has grown. And yet, in the last five years, between 2018 and 2022, LTMG Hospital has gone backwards. It has identified just one donor and convinced none for organ donation.
Something has gone amiss.
“Back then nobody knew the protocol,” Trivedi said. But, she said, theirs was a team of doctors who were passionate about organ transplants. “Now everyone knows the protocol but they still don’t want to do it,” she added.
In recent years, according to a doctor associated with the hospital, the hospital’s leadership has taken little interest in organ donation, and the programme has died down.
Trivedi argued that the Indian government’s focus on spreading awareness about organ donation was misplaced. “Society is not the hurdle,” she said. “Hospitals and doctors are. Government must address them first.”
Dr Mohan Joshi, dean of LTMG hospital, said that the hospital’s doctors were already overburdened. “We carry out thousands of other surgeries that save lives,” he said. He added, “The concept of brain death is unknown to the slum population. This is the population we cater to. It is difficult to convince them.”
Indian hospitals’ failure to implement a robust process for ensuring transplants from deceased donors is apparent from data over the past decade. Between 2013 and 2022, 97,084 organ transplants have been conducted in India, the numbers growing each year, except for 2020, when transplant surgeries took a dip due to the Covid-19 induced lockdown. But most of these were live transplants where a family member donated a kidney or part of liver to their relative: in all, of the nearly lakh transplants carried out, only 18% were organs from deceased donors.
The poor performance of the public sector has forced many economically disadvantaged people to register with private hospitals for a transplant. This leaves them and their families with colossal debts that they have no way to repay.
For Prema Ram, obtaining a pair of hands has cost him over Rs 33 lakh so far – the process will continue to drain his resources for several more months.
In 2008, Ram was in the ninth grade when he tried to climb a power grid in his hometown of Kotri, near Ajmer, in Rajasthan. He was electrocuted, and both his arms had to be amputated above the elbow.
He continued his studies, but needed assistance to bathe and to eat food, and needed a writer for every exam he took. “I was young, I couldn’t understand the implications of amputation immediately,” he said. “As I grew up, I realised I was dependent on my family for all work. It affected my choice of making friends, of venturing out.”
In 2019, his brother Om Prakash came across news on television of a hand transplantation in Kochi. The Amrita Institute of Medical Sciences in the city was the first hospital in India to do a hand transplant in 2015, and had since conducted multiple such procedures for those who had lost both hands. Ram and Prakash contacted the hospital for more information.
They were told that the surgery would cost them Rs 25 lakh, apart from the cost of medicine. “We are farmers,” Prakash said. “Our earnings depend on rain. We did not have this much money.”
But they began collecting money, asking relatives and friends to pitch in. After they had collected some money, and been assured by friends and family of more when they needed it, Ram and Prakash visited Kochi in 2020 – doctors had told them they would have to travel to the city, and then wait for a donor. The hospital had a long waitlist of people waiting for a hand transplant, some from as far as Bangladesh and Afghanistan – so, for nine months, the brothers lived in a rented flat and waited. They spent Rs 4.5 lakh on food and shelter. “Finally our money got over and we returned home,” Prakash said.
Prakash then began a crowdfunding campaign through an online platform. They were able to gather Rs 20 lakh over the next two years. In 2022, the brothers contacted Mumbai’s Global Hospital, which had also begun to perform hand transplants, in 2020.
They moved to Mumbai and began to live there, awaiting a phone call from the hospital. On February 8 this year, Prakash got a call from the hospital that a hand donor was available. But there was a catch. The hand had to be flown in urgently on a chartered plane from Surat. That would cost an additional Rs 8.5 lakh.
Organs, once harvested, can last only a few hours. A heart can last for four hours, a liver for 18 hours, lungs for eight hours and a hand for 12 hours. “We did not have the kind of money needed to pay for a chartered flight,” Ram said.
Once again, they began asking everyone they knew for money.
Intercity organ transport and its high cost remains a pressing issue. A chartered flight typically costs at least Rs 5 lakh, or upwards. A commercial flight can be used only if the donor’s family is willing to wait for the scheduled time of the flight.
“Most do not agree,” Sorate said. “They are giving us their organs, we can’t expect them to delay the funeral so that we can book a cheaper flight.”
In one instance in 2016, a heart was donated in Bhuj in Gujarat and a waitlisted patient in Mumbai’s Fortis Hospital was found compatible with the donor’s blood group. But the aviation company increased their initial quote from Rs 5 lakh to Rs 14 lakh in a matter of five hours. The patient could not afford the fee, and the transplant could not be done.
Dr Krishan Kumar, director of National Organ and Tissue Transplant Organisation, told Scroll that the health ministry was in communication with the aviation ministry about ways to lower the cost of organ transport. “We do understand this is a concern,” he said. “The cost is borne by the transplant recipient.”
Rajesh Sahu, founder of Aurea Aviation, said that there were very few aircraft in the country that had an air ambulance license. “The demand is high and supply is low,” he said. Across India, he noted, less than ten companies provide this service. If a chartered flight has to be flown at night, he added, the charges are higher than day time flying.
When Ram and Prakash realised there was no alternative, they agreed to fly the hand from Surat in a chartered flight. The surgery was carried out successfully.
When Scroll met the brothers in March, they were struggling to repay an outstanding balance of Rs 12 lakh to the hospital. “We are happy he has both hands now,” Prakash said. “But I wish there was some provision to make it affordable.”
For now, SOTTO pays Rs 10,000 as medicine cost to a poor organ recipient, an almost negligible amount. Another Rs 10,000 is paid to the donor family to cover the cost of the deceased person’s funeral.
Ram’s financial struggle is common to every poor patient. In Mumbai, Vijay Kumar, a mechanic, is working overtime to save money for a kidney transplant. After meeting and speaking to Pachkar at Siddhivinayak’s dialysis centre, he too registered himself in a private hospital to get a faster donation.
Kumar, who is 43, was diagnosed with chronic kidney failure in 2021, and has been undergoing dialysis for the past two years. He now requires dialysis thrice a week. He works as a mechanic and cannot leave his garage for long, so he undergoes dialysis either early in the morning or late at night. This means cutting down the time he spends with his wife and daughter. “Dialysis takes away a lot of time,” he said. “It is a lifelong dependency that I want to get rid of.”
In January 2022, he registered himself for a kidney transplant in a private hospital’s waitlist. The hospital gave him a cost estimate of Rs 12 lakh for the transplant. He began crowdfunding and made desperate calls to all his clients, asking them to pay an advance, and promising to provide free vehicle service for the next few years.
In one year and three months, he has managed to collect Rs 4.5 lakh. “I am at number 930 in the waitlist for a kidney,” he said, laughing bitterly. But he is confident the private hospital will move faster than a government hospital. “It is a race to collect money,” he said. “If I get a donor but have no money, I may not get the transplant after all.”