Life-saving procedures for those who can pay

Amar Singh Bhatia died in 2021 after waiting over two years for a kidney transplant.

A retired air force officer from Bareilly, a town in the northern state of Uttar Pradesh in India, Bhatia was diagnosed with end-stage renal disease in 2017 and was told in 2019 he needed a kidney transplant.

“His family was very hopeful,” says Charu Aneja, a lawyer based in New Delhi, India’s capital. “But when Amar passed away, they lost all faith in the system.”

He spent the last years of his life shuttling between his hometown and New Delhi, a distance of over 200 kilometers, visiting hospitals and court to get permission for a kidney donation from his childhood friend.

“The pandemic was there,” says Aneja, who represented Bhatia in court. “There was no understanding that the patient was far away and suffering from comorbidities. His wife was also suffering from high sugar levels.”

High demand, short supply

Organ transplantation is a surgical procedure in which a failing or damaged organ is replaced with a healthy one from someone who does not need it. The kidney is the most commonly transplanted organ in the world.

In India, access to this life-saving procedure is difficult and as a result of the growing demand, a market for human organs has flourished.

Last year, an investigative report by The Telegraph, a UK-based newspaper, revealed that young villagers from Myanmar were being flown to the New Delhi branch of Apollo Hospitals, an Indian multinational healthcare company, and were being paid to donate their kidneys to rich Burmese patients. 

In 2022, CNN-News18, an Indian news channel, reported on the widespread trade in kidneys of poor Nepalese in India. The year before that, the police busted an illegal human organ trade racket in the northeastern state of Assam.

Around 500,000 Indians die every year because no organs are available. According to data obtained through a right-to-information request to the National Organ & Tissue Transplant Organisation, which oversees organ donation and transplantation in India, over 70,000 Indians are on the waiting list for organ transplants.

“There are many lifestyle diseases in India today,” says Sunil Shroff, urologist and transplant surgeon in Chennai, the capital of the southern state of Tamil Nadu. “We are the diabetes capital of the world. High blood pressure is more common in Indians than in the white population. At least 60% of kidney failures are due to it.”

Inequity in organ transplants

Alcohol is on the rise, which has led to an increase in cases of fatty liver and cirrhosis. “We also have a high rate of infection from the hepatitis virus,” Shroff said. “So, the rate of liver failure is also increasing. With COVID-19, the requirement for lungs in this country has risen sharply as well.”

Despite the increasing demand, about 16,000–17,000 organ transplants per year have been performed in India’s hospitals in the last two years, which is less than one transplant per million population. That is over 100 times less than in the United States and Spain.

Human organ transplantation began with a series of experimental studies in the early 20th century, and picked up after the Second World War. Over time, improvements in medical technology led to an increase in the demand for organs. But because there has never been an adequate supply, the human organ trade has flourished.

“The organ trade always flows from the poor to the rich,” says Shroff. “Ethically, this is coercion. Most people donate for money to marry off a child or pay off a loan or whatever the reason may be. And what happens then? The money is used up after a few months.”

When that happens their health deteriorates, Shroff said. “Many of them are workers who can no longer work because they feel weakened. The feel-good factor is not there,” he said.

Can laws stop a lucrative trade?

In 1991, the World Health Organisation adopted a set of guiding principles for the ethical transplantation of human organs.

In 2008, 151 representatives of scientific and medical institutions, government officials, social scientists and ethicists met in Turkey and drafted the Declaration of Istanbul, which is now supported by more than 135 organisations involved in organ transplantation.

Both resolutions endorse maximising the benefits of transplantation and equitable distribution to those in need, and prohibit commercial trade in human body parts.

India enacted a law to regulate organ transplantation and prohibit the sale of human organs in 1994. Yet, many of the problems continue to persist. “India has the strictest law in the world,” says Shroff. “But we have to go beyond that now.”

Most organ donations worldwide come from people who have died. In contrast, over 80% of organ donations in India come from living people.

“The number of donations from deceased donors is 0.8 per million population,” says Kapil Soni, professor of critical and intensive care at the All-India Institute of Medical Sciences in New Delhi, India’s largest public hospital. In western countries, such as Spain, Croatia and the United States, there are at least 26 donations per million population. India’s donation rate is not in proportion with what is required in the country. So, we are working in a deficit.”

Increasing the supply

There are several reasons for the low donation rate. “Many times, families of deceased patients are reluctant to give consent,” Soni said. “Their beliefs vary depending on the age of the patient, their own circumstances, understanding of the process and confidence in the doctors.”

Shroff said that many hospitals in India are not equipped for organ removal from deceased patients. “In the event of a brain death [the irreversible end of all brain activity], our legislation mandates that physicians obtain the relatives’ approval before removing a patient’s organs,” Shroff said. “Now, there is a process to certify that a patient is brain dead by doing certain tests. Doctors don’t know how to do those tests.”

The government launched the National Organ Transplant Program in 2010 to promote deceased organ donation and train hospital staff. Things are now better. According to Soni, the annual number of organ donations at his hospital has increased from around six to somewhere around 18.

Donating a living organ is a challenging procedure. Under Indian law, hospitals are only permitted to donate living organs if they are certain that donors and recipients have long-term association. In the case of Bhatia, the hospital was not convinced that his donor was a childhood friend.

“They kept asking for more photographs,” says Aneja. “The final decision depends on the whim of the hospital authorization committee. We were never informed of the reasons behind their lack of conviction.”

The committees ensure that the procedure is done properly. “Committees want to make sure that they are not facilitating something illegal going on behind their back,” says Shroff. “If a commercial deal is discovered afterwards, then everybody gets caught.”

Since the tragic passing of Bhatia, the court has directed the government to establish clear timelines for deciding on applications for living organ donations. On 3 May 2024, the Indian government issued an order setting timelines for every step in the process.

“But nobody is looking at the root cause,” says Shroff. “The root cause is there is a lack of trust because there is so much organ commerce. If we just increase the number of people registering to donate their organs, the stress in the program and the requirement for living organs will automatically come down.”