Organ donation in India needs a major push

Rakesh Kochhar

Former President, Indian Society of Gastroenterology

RECENTLY, the PGI, Chandigarh, conducted its first-ever simultaneous pancreas and kidney transplants in a young man with Type 1 or juvenile diabetes. It was unique that the kidney was donated by the patient’s sister, while the pancreas was transplanted from a deceased accident victim. Fortuitously, the pancreas was available at the time the kidney transplant was planned.

Organ donation in India is regulated by the Transplantation of Human Organs and Tissues Act (THOTA), 1994, which was amended in 2011. The Act made commercialisation of organs a punishable offence and also brought in the concept of brain death in India. The latter paved the way for deceased organ donation (retrieving organs from brain stem dead persons). Under the Act, the government has set up the National Organ and Tissue Transplant Organisation (NOTTO) as an apex centre for procurement and distribution of organs. In addition, there are regional (ROTTO) and state transplant organisations (SOTTO). The latter lists recipients and allocates organs in each state using an organ-sharing network.

While an alive person can donate one of his kidneys or a part of his liver, organs such as pancreas, lungs, heart and cornea can only be retrieved from deceased individuals. There is an ever-increasing gap between the number of organs available and the number of patients on the waiting list. In 2019, there were 550 transplant centres in India and 12,666 organ transplants were carried out, the third highest in the world after the USA and China. Most transplants in India are from living donors, with only 715 deceased donors reported in 2019. A majority of transplants are being done in private hospitals with only a few public sector hospitals having the facilities.

Organ donation from deceased individuals is the primary source of organs in the developed world. India lags behind other nations with an organ donation rate of less than one per million population (pmp) compared to Spain (35.1 pmp) and the US (21.9 pmp).

Some of the reasons behind poor organ donation are lack of medical infrastructure, especially in public sector hospitals, misinformation, lack of public awareness, religious beliefs and strict laws. In Kerala, there was a steep drop in the number of deceased donors from 76 in 2015 to eight in 2018 because of unfounded rumours that private hospitals were declaring patients brain-dead when they were not. In Tamil Nadu, organ donation had dropped a few years ago because of a notion that foreign patients were getting precedence over the locals.

A multi-pronged strategy is needed to fulfil the potential of organ donation in India. It has to involve both government and private hospitals. Students and staff in all medical institutions ought to be primed towards organ transplantation. Organ donation should be part of MBBS and postgraduate curricula. Departments of organ donation need to be set up in select medical colleges.

The Transplantation of Human Organs (Amendment) Act, 2011, included a provision whereby patients and their families must be made aware of the ‘option to authorise or decline for donation of human organs or tissues’ in the event of brain death. But brain death declaration by the neurological criterion is not a routine practice among medical professionals. Unfortunately, the legal provision of declaration of brain death to retrieve organs has not yet been adopted by 12 out of 28 states and two of the eight union territories.

There is a need to ensure uniformity in declaration of brain death with mandatory reporting and accountability. A hub-and-spoke model has been suggested with the setting up of organ retrieval centres in medical colleges and trauma centres feeding transplant centres. Teams of intensivists, neurologists, counsellors and ICU staff should be trained in identifying potential donors and end-of-life care. Uniform treatment guidelines are needed to maintain cadaveric donors once consent is given for donation.

States such as Tamil Nadu, Telangana and Gujarat have been leading in deceased organ donation. Tamil Nadu made brain death certification mandatory in 2008, becoming the first Indian state to do so. By generating public awareness through campaigns among both the public and the medical fraternity, it gave a fillip to deceased organ donation. Non-governmental organisations such as MOHAN Foundation, Organ India, Pravin Agarwal Foundation, Shatayu and the Apex Kidney Foundation have played a major part in the promotion of organ donation. Tamil Nadu ranks first in India with a deceased organ donation rate of 1.8 per million population, which is seven times the national average. In many countries, organ donation after circulatory failure has been used to expand the donor pool, but the PGI is the only hospital where it has been practised in India so far.

Campaigns for deceased organ donation after brain death have been successfully conducted, both in a public hospital (Armed Forces Organ Retrieval and Transplantation Authority) and a private hospital group (Fortis Organ Retrieval and Transplant). But these have not been replicated widely. The addition of over 40,000 ventilators during the Covid-19 pandemic to equip a total of 1,00,000 ICU beds could act as a boost for deceased organ donation. With about 1,50,000 road accident deaths annually and stroke incidence of 44.5 per lakh population, there is a large pool of potential donors.

While there is a need to develop more transplant centres, especially in the public sector, even non-transplant organ retrieval centres can have a multiplier effect on deceased organ donation. There is huge untapped potential there. But currently some of the available donated organs are not used for transplantation because of lack of infrastructure or a transplant team.

Simultaneously, there is a need for public awareness, donation pledging, orientation and sensitisation of legal experts, judges and police personnel. We should augment financial support for organ transplantation and retrieval from philanthropic organisations and rope in NGOs. There should be a provision for honouring families of donors or giving incentives to their family members. Donated organs are a national asset and organ transplantation should be a national priority.

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