Opinion | Organ Donation: India May Soon Have A Patient-Friendly System

Some hope is on the horizon for patients and families in need of organ transplants. There are reports that the Central government is mulling over opening up organ exchange between unrelated individuals, for which the Health Ministry is in talks with the medical fraternity, state government officials, legal and ethical experts, and non-government organisations (NGOs). Discussions are on also about fixing legal loopholes, providing health insurance to organ donors, and encouraging deceased organ donations.

Organ failure has been one of the leading causes of morbidities, and many needy patients lose their lives due to a lack of organ availability. One deceased organ donor can save eight to 10 lives. However, despite India's huge population, organ donations and transplants remain sparse in the country. Living organ donations and transplants are relatively more common, but deceased organ donations are almost negligible. 

A Massive Demand-Supply Gap

There's a gap between demand and supply. According to government data, around 1.8 lakh persons suffer from renal failure every year, but the number of renal transplants carried out is just around 6,000. Similarly, around 2 lakh patients die of liver failure or liver cancer annually in India. What is unfortunate is that 10-15% of such patients can be saved with a timely liver transplant. Roughly, around 25,000 to 30,000 liver transplants are needed annually in India, but only about 1,500 are conducted. Likewise, only 10 to 15 heart transplants are carried out every year in India though about 50,000 people die of heart failures annually. 

India's deceased organ donation rate is less than 1 donor per million population a year. According to data published by the National Organ and Tissue Transplant Organisation (NOTTO), India currently has 1,54,733 registered organ donors. That is less than 1% of the country's population. Rajasthan, accounting for 35,773 pledged donors, tops the list in terms of the number of registered organ donors. The state is followed by Maharashtra and Karnataka, with 26,447 and 21, 336 donors, respectively.

Hope, But With Caution

The Transplantation of Human Organs Act (THOA) was enacted in 1994 with the objective of regulating the removal, storage and transplantation of human organs for therapeutic purposes and for the prevention of commercial dealings in human organs. The Act was amended in 2011 and is now called the Transplantation of Human Organs and Tissues Act (THOTA), 1994 (notified on March 27, 2014). According to THOTA, organ donation and transplant is possible only across genetically close relations - grandmother, grandfather, mother, father, brother, sister, son, daughter. Both the donor and the recipient must be above the age of 18. The eligibility for donation is determined by the donor's physical condition in the case of both living and deceased donors, with specific guidelines for each case.  

Jaya Jairam, Project Director, MOHAN Foundation Mumbai, hails the Centre's plans, but with caution. "Enabling organ exchange between unrelated individuals for a swap or exchange is certainly a welcome move, provided the donor's intent is verified to be altruistic and ethical. Ensuring that the donor is fully informed of the risks involved and has made an informed decision is crucial," she says. "The US and the UK have expanded their living donation programmes through swap registries, with unrelated donors playing key roles. With our increasing reliance on living donation programmes, Indian laws must also ensure safeguarding donor's rights by mandating the role of an 'Independent Living Donor Advocate' (ILDA) at all transplant centres."

Donation Swaps

In many cases, even if a donor and a patient are genetically related, problems arise if the blood groups are not compatible. Around 40% of donor rejections are due to this reason and patients have to wait endlessly for a suitable match. For such patients, the government has started a 'paired exchange programme', wherein if a recipient from one pair is compatible with the donor from the other pair, and vice versa, a 'swap' can be arranged. This helps in easing the long waiting window for patients. 

However, there are caveats to this. Implementation may be a problem, as well as the cost, given that such exchanges will require patient, donor and organ transportation and maintenance. To make treatment more accessible to the common public, it's important that government hospitals become the nodal centres for both organ transplants and deceased organ donations. 

Gujarat Shows The Way

Gujarat, which has been among the top states in India in terms of deceased organ donation and transplants, is the only state to conduct cardiac transplants in the public sector (barring AIIMS Delhi). Transplant services in the state's government hospitals are three times more affordable than the private sector. While the Institute of Kidney Diseases and Research Centre (IKDRC) is the only government hospital in the country that has done more than 640 liver transplants from deceased donors, the U.N. Mehta Institute of Cardiology & Research Center has done around 30 heart transplants. The state also set up the Gujarat University of Transplantation Sciences (GUTS) in 2015, the world's first and only university for transplantation and allied sciences.

Pranjal Modi, IKDRC Director and Vice-Chancellor at Gujarat University of Transplantation Sciences (GUTS), says, "There should be a national programme that runs in such a way that neither the hospital nor the patient faces the need to look for the best pair. A technology-based programme should be initiated that can match donors and recipients, as well as specify other things, say, location."

(Bharti Mishra Nath is Contributing Editor, NDTV)

Disclaimer: These are the personal opinions of the author