On April 18, Rivyani Rahangdale, a six-year-old girl from the tribal district of Gondia in Maharashtra, was admitted to a Nagpur Hospital after being hit by a motorcycle while she was drinking water from a tap near a road. She had severe head injuries. Despite surgery, she remained unconscious and was soon declared “brain stem dead”, which meant that her brain was irretrievably damaged and her heart would stop soon.

In that moment of what must be unimaginable sorrow, her parents in a humbling gesture agreed to donate her organs for transplantation. Her father Radheshyam Rahangdale, a police driver is quoted as saying, “When doctors told me that my daughter was brain-dead, my first thought was, her other body parts are not dead. So why not let them stay alive?”

On April 28, Rivyani’s heart, liver and kidneys were removed and transplanted into four fortunate individuals who were desperately waiting for organs to avoid death. By this remarkable act, the Rivyani’s family joined a growing list of Indians who, in the midst of sudden colossal tragedy, consent to donating the organs of someone very close to them. They do this without asking whom the organs will go to and expecting anything in return.

In some parts of India such donations are increasingly saving lives. Donated organs are being transported across cities and even states by using “green corridors” that ensure that traffic is stopped to save vital minutes so that the organ is transplanted in time. Organs are being transplanted across gender, caste and religious identities. Given the divisive times we are going through in this country, shouldn’t we be celebrating such acts of solidarity and kinship?

There is however a spoiler in this inspiring tale. Organ transplants in India are prohibitively expensive. There are very few public hospitals performing transplants. More than 95% of organ transplants especially of organs like livers and hearts are currently performed in the private sector where costs range from Rs 20 lakh to Rs 25 lakh. Even relatively less complex kidney transplants cost between Rs eight lakh and Rs 10 lakh. The costs of tests on the deceased donor and transport – which can run into lakhs if they are airlifted – are often transferred to the recipient. Though there are allocation criteria for organs in all states, structural inequity allows organs donated as a public good going to those who can afford them rather than those who need them the most. But, on the other hand, we appeal to all ordinary citizens to be altruistic & donate organs after death.

Unequal chances

Like in many other spheres, the poor by the accident of their birth stand little chance of receiving life-saving transplants.

The domination of the private sector in tertiary healthcare is even starker in transplantation. Transplants in public hospitals are currently restricted to very few large teaching hospitals in metros. For example, only around 1% or 2% of liver transplants are currently performed in the public sector. Most countries allocate organs by disease severity consistent with principles of justice and perform them as a part of a universal health care system. The WHO’s guiding principles on organ transplantation explicitly emphasise the importance of equitable allocation of organs.

As opposed to a few decades ago, more Indians are now benefiting from organ transplants from deceased donors. With the government now promoting deceased donation as a national movement, should we permit this structural inequity in healthcare where everyone is urged to donate but only the affluent receive organs? Wouldn’t the appeal from the Prime Minister in one of his Mann ki Baat episodes, to be magnanimous in death & donate organs soon begin to sound hollow? Also, is this not organ trade in a subtler form?

Making the odds even

Like trickle down economists, one may hope that things will even out with time and the benefits of deceased donation will be passed on to everyone in need. But the fault lines of healthcare in India do not offer much hope. The numbers of the rich who need transplants will continue to vastly outnumber the number of donors for a long time. The transplantation community first needs to recognise this fault line.

Are there are then any credible ways to restore equity? One way out is some form of affirmative action. For example the state can mandate that every alternate organ be allotted to a public institution. Or it could even ask the private sector to perform a certain number of transplants at a significant subsidy. The state has the moral authority over a donated organ and has the right – even a duty – to tweak allocation policies for the larger public good.

Of course, this should be accompanied by building capacity in the public sector. It is important to note that historically some of the first successful organ transplants in India were performed in public institutions. Finally, transplants could be funded under state insurance schemes including the newly launched National Health Protection Scheme. With the establishment of the National Organ & Tissue Transplant Organisation, the state has already announced its keenness to coordinate transplantation in the country. It now needs to go beyond issuing appeals for donation and turn its attention to promoting equity in allocation.

After all, family members agree to donate organs of a father, mother, brother or sister who has just died since they trust the system to use them for the person in maximum need. We need to collectively ensure that we do not betray that trust. If people feel that they stand a chance of even receiving an organ if they need one, they may be more willing to donate.

Rivyani Rahangdale would have turned seven last weekend. After donating his daughter’s organs, Radheshyam Rahangdale had a message for the parents of the three-year-old who received her heart. “Please convey to them that they should celebrate my daughter’s birthday on May 5 every year along with their child’s regular birthday,” he said. One hopes they heard his request, but as for the rest of us, while we celebrate the gifts of life from citizens like the Rahangdales, can we at least begin to address how they can receive them?

The writer is a surgeon and joint secretary of the Zonal Transplant Coordination Centre in Mumbai.