How much for my kidney?

Delhi Police recently blew the lid off a kidney transplant racket run out of Apollo Hospital. But it will take more than police action to provide patients with affordable dialysis, and shorter queues for legal transplant

Shuv will turn 5 this August. “He plays, runs about,” says his father Bhanu Prakash Singh. But Shuv’s is not like other kids his age.

A year after his birth, the boy started suffering from complications in his heart, which doctors identified as congenital defects. The young resident of Etah district in Uttar Pradesh is now on the waiting list for heart transplant at Delhi’s All India Institute of Medical Sciences.

The family first took the boy to a private hospital in Gurgaon. “The doctors there suggested that we opt for artificial heart transplant. Following this, we decided to take our child to AIIMS. The hospital will contact us once there is any donor, and if there is a possibility to carry out a heart transplant on Shuv. We have no option but to wait now,” says Singh. Shuv is the younger of Singh’s two children.

There has been little progress in addressing the demand-supply gap in organs in the capital in the last decade, say doctors. With little awareness on organ donation, the gap is growing, say experts.

Recently, an interstate kidney racket was busted at Apollo Hospitals, Delhi in about a dozen people have been arrested so far. According to police, while the kingpin used to sell kidneys for Rs 20-25 lakh, the middlemen used to receive Rs 1-2 lakh. Employees of Apollo Hospitals have also been arrested in this illegal organ trade case.

While in the case of kidneys and liver, live donation is possible, heart transplants can only be carried out if the family of a brain dead patient comes forward and donates the organ to the hospital.

Dr M C Mishra, AIIMS Director, points out that 99.9 per cent of patients requiring a heart transplant do not manage to get a donor. Similarly, 95 per cent cases of patients requiring a liver transplant cannot get it done. Ninety- seven per cent of patients suffering from renal failure and who need kidney transplants do not get donors, he adds.

Families of kidney failure patients who get donors within the family consider themselves lucky. “My son has been lucky twice. In 1998, he underwent the first kidney transplant. At that time, his mother donated him one of her kidneys,” says Bhagwan Parashar.

Puneet, now 36, suffered kidney failure in March. “He has to go for a re-transplant. This time my younger brother will donate a kidney. We are just waiting for the doctor’s approval,” says Parashar, while waiting outside the nephrology ward at Ram Manohar Lohia Hospital.

A patient needs a kidney transplant when 90 per cent of both the kidneys stop functioning, says Dr Himanshu Sekhar Mahapatra, head of nephrology department.

“Of the total number of patients coming to the nephrology OPD, around 30-50 per cent need dialysis. However, with the current infrastructure, only a restricted number of people can be given dialysis. This roughly translates to 20 per cent patients every month,” says Dr Mahapatra.

There is no other option but to refer the rest to other hospitals, he says. While some patients turn to private hospitals, several others who cannot afford the treatment eventually die of renal failure in the absence of a robust infrastructure at government hospitals for dialysis and non-availability of organs when the patients need transplant, say doctors.

There is also a shortage of ICU and surgical beds at hospitals to carry out the transplants.

At the Institute of Liver and Biliary Sciences (ILBS), there are four to six kidney transplants a month. “In the last three years, there have been 98 kidney transplants at the hospital. But most of these are live donations,” said Dr Suman Nayak, Associate Professor at the nephrology department.

Organ donation
“It is exactly a year since my younger brother passed away. He is survived by two young children – one 4 and the other 7. Our only consolation is we donated his organs and that he helped save multiple lives,” says Apninder Singh, who donated multiple organs of his 41-year-old brother to AIIMS.

The patient had suffered brain haemorrhage and was declared brain dead, following which the family wanted to go ahead with the organ donation.

“Currently, there is little awareness among families to donate the organs of a brain dead patient. Firstly, there is a lot of coordination required among the hospital staff, police team and family members of the patient to facilitate organ donation. Families are distraught as in most cases the patients are accident victims,” says Rajeev Maikhuri, transplant coordinator at Organ Retrieval Banking Organisation, AIIMS.

“The transplant team also needs to be more sensitised. While we actively follow up with the recipients’ families, the donors’ families are forgotten. They should be given a platform to share their stories. This will also help other people to emotionally connect and come forward to actively take up the cause of organ donation,” says Maikhuri.

In several cases, patients’ families insist on donating to a particular institute. “If there are no suitable recipients available at that time at this particular hospital, we usually tie up with other hospital for donating the organ with the patient’s consent. The waiting period for a patient can vary from days to years, depending on the availability of organs,” he adds.

Interstate coordination is also poor and only in few cases, organs are flown in from other cities for recipients. In case of government hospitals, it becomes almost impossible to furnish the cost of charter planes to flow in organs. “Of the 80-100 people declared brain dead at the AIIMS every year, only eight-10 families at the most agree to donate the patient’s organs,” said Dr Mishra.

Most hospitals also do not have dedicated transplant coordinators who can convince the families on this issue.

People also battle religious beliefs while donating their family member’s organs. “There is a need to sensitise the masses about how this contribution can help thousands of lives. This is the only way how in the long run the demand-supply gap can be shortened,” says Dr Nayak.

Fight against trafficking
In case of kidney transplants, besides first-degree relatives, altruistic donors can also come forward and donate kidneys. This means a person is donating a kidney out of goodwill and there is no monetary transaction involved.

However, this is a grey area under which illegal organ trade continues. With no progress in bridging the demand-supply gap, such illegal trade will only thrive, say experts. “It is time that we open a debate on the legalisation of organ donation in lieu of money.

This will put an end to the organ trafficking rackets. The logic so far has been the poor should not be exploited. To stop commercialisation, there should be a uniform rate throughout the country. But the laws should change and legalise organ donation in exchange of fixed charges,” says Dr Mishra.

“There has been no progress in battling the shortage in the last 10 years. Going by the current rate, little will be achieved in the next decade,” he adds.

For patients awaiting organ transplant, it is an endless wait. Several patients also cannot afford the prices quoted by the private hospitals. “I was undergoing treatment at a private hospital which suggested that I need an immediate heart transplant. The price quoted was Rs 25 lakh which I could not have afforded. I then went to AIIMS.

I have quit my work as a broker and only stay home as I have several restrictions. It is
my family’s support which keeps me going now,” says Sandeep Kohli, 49. He has been on the waiting list for heart transplant at AIIMS for over a year now.