Should family members, or the most severely ill, be given preference in cases of organ donation?

The case of Mumbai-based dialysis patient Nitin Vhaskar, who was granted permission to bypass the deceased donor transplant programme’s waiting list for a kidney, is not the first of its kind in India. Similar conundrums have arisen earlier, in Mumbai as well as elsewhere.

Earlier this week, Vhaskar was approached by organ donation counsellors when his brother Sandeep Vhaskar was declared brain dead following a brain haemorrhage. He consented to giving his brother’s body for donation, but on condition that he receive one of the kidneys, out of turn.

The matter immediately came up before the Zonal Transplant Coordination Committee in Mumbai but its members were unable to agree on whether to accept Vhaskar’s consent to donation. The National Organ and Tissue Transplant Organisation, the central government body in charge of the country’s deceased donor transplant programme, was contacted for advice. It was past midnight when the body called and granted permission for the allocation, and the transplant was carried out shortly thereafter. All this was the subject of heated discussions on social media, and tensions continue to simmer, and not just in Mumbai.

Too few cadaver donations

Most of the 720 kidney transplants from brain dead donors in india in 2014 took place in Tamil Nadu, Kerala, Maharashtra and Karnataka. This is a fraction of the 3,000 to 6,000 kidney transplants in India that year – the rest being from live donors, many of which are suspected to have involved cash transactions.

The cadaver organ transplant programme is run at the state level, and the necessary components that include promoting public understanding of brain death and the importance of organ donation, collaboration between hospitals, and protocols for allocation, are made possible through state government orders issued on the basis of the Transplantation of Human Organs Act.

Once the relative of a person who is declared brain dead is counselled and consents to organ donation, the local transplant coordination committee, charged with ensuring distribution of cadaveric organs in line with the law, allocates organs from the waiting list according to a protocol developed at the state level. Though there are more than 3,000 people on the waiting list for kidneys in Mumbai, just 89 cadaver kidneys were transplanted in all of Maharashtra, in 2014.

All state programmes do not follow the same protocols for how organs are to be shared between hospitals, or given to patients on the waiting list. Criteria for kidney allocation can be as simple as seniority on the waiting list or involve a complex calculation that takes into account factors such as severity of disease.

In Maharashtra, in the case of cadaver livers, the hospital where the organs are harvested gets first priority to transplant the organ to a patient at that hospital. This priority is overruled if there is a person with fulminant liver failure – rapid development of acute live injury without there being evidence of previous liver disease – registered anywhere in the city.

In Maharashtra, hospitals where kidneys are harvested from cadavers are also given priority over one kidney, while the second kidney goes into the general pool of transplant organs. In Tamil Nadu, one kidney is retained by the hospital that can use its own prioritisation criteria just as long as these have been made public earlier.

When family is priority

Tamil Nadu’s deceased donor transplant programme is considered to be a model for this part of the world. The state’s deceased donor kidney transplant rate is three times the national average. Soon after the programme’s inception in 2008, government guidelines were modified to permit relatives of organ donors to get priority in organ transplant, as long as the hospital certified that the recipient was a near relative as defined in the Transplantation of Human Organs Act, suffered from kidney failure and would benefit from a kidney transplant. Those closely involved in the state’s programme hold that this is in consonance with building public support, and the obligation to take care of the donor’s family. It is argued that the flexibility in the Tamil Nadu system makes for greater support from the community as well as from collaborating hospitals. The flip side, of course, is that there is more scope for manipulation of the system.

There are limitations in any of these systems. For example, if organs are allocated only according to when the person registered for a transplant, the more severely ill, who need it the most, do not benefit equally. When hospitals are allowed to follow their own criteria for allocating an organ to patients registered with them, there are ways of jumping the queue.

Perhaps most importantly, organ transplants are going to be limited to the middle class who can afford the surgery and lifelong medication. The majority of transplants are carried out in private hospitals and if kidney transplants cost Rs 3 lakh to Rs 5 lakh, liver transplants are 10 times that amount. In addition to the thousands of people on the transplant waiting list across the country, there are many more thousands who would benefit from a transplant but whose names will never make it to the registry.