This Delhi-Based Woman Is On A Mission To Spread Awareness On Organ Donation, Transplantation Across India

Nine years ago, the mother of Sunayana Singh's friend was suffering from heart disease and needed a transplant. The family went from pillar to post, trying to figure out how to get it done, where to go, which hospitals would do the surgery and what the process was going to be.

During this time, Singh's friend spoke to her about a family NGO Parashar Foundation and how she wanted to start awareness on organ donation so that others don't suffer the same way her family has.

"I'll do it. I immediately told my friend. The next day, I quit my job," Singh said.

Later that month, in 2013, Singh founded ORGAN India-an Organ Receiving and Giving Awareness Network and a non-profit organisation based in Delhi.

"At the time, I knew almost nothing about organ donation and transplant," Singh said.

About ORGAN India

ORGAN India aims to raise awareness across India, especially in the North, and help people who are facing organ failure to be able to get the right help and understand the process. It wishes to build an Eco-system where people can access the information and has carried out numerous initiatives, including a 24/7 Helpline.

One of these was a research report on the state of Deceased Organ Donation in India. Under ORGAN India, comprehensive research and collated data on Transplants in Delhi/NCR are carried out after interviewing respondents in all the major hospitals in the area. The report includes successes, failures and gaps in the current system to provide a seamless network in the future. It is the first of its kind in North India.

ORGAN India works closely with NOTTO (National Organ & Tissue Transplant Organisation) and has collaboratively carried out many awareness events and organised Collaborative Conclave for Organ Donation under the aegis of the NGO. The Conclave is an annual meeting of all NGOs in organ donation and transplant space across the country to discuss challenges, new initiatives, and collaboratively look the way forward.

Besides this, it has also tied up with leaders and celebrities to create awareness and encourage people to sign up as donors. Several short films have been commissioned by ORGAN India and screened on different platforms for the citizens, government bodies, NGOs and hospitals to promote organ donation.

"Our constant radio programming over the last two years on All India Radio and several community radio stations are the first of their kind in India consistently and are very well received," Sunayana Singh, CEO, ORGAN India told The Logical Indian.

This year, the organisation will be working on the new project 'Team Management for the Indian Contingent at the World Transplant Games 2023' in Perth, Australia.

"Getting together the team, training players and taking them for a successful inning in Australia will greatly inspire the public here in India and highlight the benefits of organ donation and transplant. We are looking forward to it," Singh explained.

Organ Crisis In India

Talking about India's deepening organ crisis, Singh said that in a country as populated as India, people should be able to retrieve and transplant enough organs for those suffering from their failure. However, they are not retrieved from thousands of brain-dead patients, which could help many critically ill patients hanging by a thread and fighting for their lives.

While it's tough to say exactly what the figures are, it is estimated that almost five lakh Indians face organ failure every year, and yet less than 2-3 per cent of them will receive a life-saving transplant. Most of these transplants (almost 80 per cent) are from living donations rather than deceased donations (after death). India's organ donation was one of the lowest globally at less than 1 per million population.

While the numbers are rising for organ donation, COVD-19 dealt a blow. The waiting lists got longer, and donations came down.

"People need organ transplants, but very few are available. On our helplines, on average, at least 2-3 calls come per day for people desperately looking for transplants," she said.

Less Organ Donation Rate In India

According to the ORGAN India CEO, the concept of 'daan' in India is substantial. She believes that when people are made aware of the idea and how it saves so many lives, they are very willing to pledge their organs and wholly support the cause.

But lack of awareness, misconceptions and myths hamper this life-saving practice. People have so many questions that they want answers to – Does the government support this? Will my body be mutilated? How do I know that the organs will go to people who need them? and so on.

"Unfortunately, when it comes to organ donation, we have done no mass campaigns across the country on the lines of Swachh India to reach out to people and address these questions," Singh said.

To further add to these challenges, brain-death declaration, retrieval, and transport require efficient coordination, which is difficult in remote areas and even in smaller cities.

"Most of the transplants are happening in private hospitals. The government sector needs to build capacity and ensure that donations in government hospitals and transplants are available to those who need them," she added.

Creating Awareness Among People

Singh shared that the solution lies in educating the masses and sensitising them about organ donation. Families need to be educated about the process and organs that can and cannot be donated. Mass campaigns, the inclusion of celebrities, sportspersons and religious leaders will hugely help take the message to the public.

Increased collaboration amongst stakeholders. Setting up transplant units/departments in hospitals across the country with the help of established centres and specialists will strengthen capacity building for organ retrieval. This hand-holding scenario has been successful and should be emulated across the country. The involvement of the public and private sectors in small cities and districts will increase the rate of organ donation and make transplantation more accessible to the public.

"If we can do this effectively, I'm confident that the donation rate in India will only increase so that millions of lives can be saved," she concluded.

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