From grief to joy! The inspiring story of a social entrepreneur

Dr Sunil Shroff, professor and head of the department, Urology and Renal Transplantation at the Sri Ramachandra Medical College and Research Institute, recently won the TiECON Chennai's Social Entrepreneur of the Year award.

This award is in recognition of his work as the founder of Mohan Foundation (Multi Organ Harvesting Aid Network), an NGO that is involved in popularising organ donation.

Sunil Shroff's ancestors are from Rajasthan but he was born in Bihar and brought up in Tamil Nadu. He had his medical education in Bihar before moving to the United Kingdom to do his Masters and work there for several years.

He came back to India to work in Chennai. With roots in many states in India, he likes to call himself an Indian.

Here is the amazing story of Sunil Shroff and the Mohan Foundation.

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Terrifying statistics about brain dead

About 140,000 people are involved in road accidents in India every year. Of these, some 67 per cent people suffer head injuries and, possibly, end up brain dead: meaning, almost 93,000 people are brain dead every year.

Even if all the 93,000 cannot donate their organs, and only 50,000 can, it is still a big number. There are 5-6 or even more brain dead people lying in hospitals in a city at any given time.

There is a huge pool of organ donors available but because of lack of awareness, organ donation is not happening frequently.

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Inspiration behind starting Mohan Foundation

After working in the United Kingdom for 12 years, I came back to India in 1995 and joined the Ramachandra Medical College in Chennai.

The same year, the Government of India passed a legislation called Transplantation of Human Organs and this allowed not only living people, but also those who are brain dead to donate their organs.

The Government of India was under tremendous pressure from international bodies to come up with the legislation as a lot of commercial donations were taking place, especially in the case of kidneys.

Once the legislation was passed, transplant of heart, liver, kidney, pancreas, etc was made possible. Since the law was passed, we have done close to 1,700 organ transplants from such patients/people. It (the number) is very low.

We have a high incidence of diabetes (120 million) and hypertension (8 per cent of the population) in India, and 50 per cent of kidney failures are due to hypertension and diabetes.

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Every year 150,000-200,000 patients need kidney transplantation but, at present, we are only transplanting 3,000-4,000 kidneys. So, there is a huge gap between demand and supply. We need to find solutions to this huge problem.

I have seen how the healthcare system works in the UK. So when the Government of India passed the law, I thought I could contribute to the society and country by popularising organ donation.

The concept was quite new here in India . . . but there was a huge demand for organs and there was a huge pool of donors available in the country. As a doctor, I felt I could contribute to fill the gap. It was the need of the hour.

When eye donation drive started 20 years back, the concept was new, but today people are well aware of the importance of donating eyes after death. There has to be an attitude shift in donating organs too. It is out of ignorance and lack of awareness that organs are not being donated in India.

From one brain dead person, 50-60 people can be benefited.

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Coining the name 'Mohan Foundation'

After I came back from the UK, I had done a survey on 5,000 people to find out the attitude of people to organ donation. It took us six months to do the survey.

When we analysed the survey, we found that 72 per cent of the people were willing to do eye donation. Almost a similar number were willing to carry an Organ Donor Card. This is what gave me the courage to go ahead with my project.

As a doctor, you see the desperation of patients dying due to kidney failure and the helplessness of their relatives. As a doctor, you know that once the transplant is done, the quality of life changes tremendously.

Download: Organ Donor Card

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On the one side, you see death taking place and on the other, there are organs not being utilised.

That was how I, along with eight like-minded doctors, a person who had had a kidney transplant, and a few well-wishers started the Multi Organ Harvesting Aid Network.

Why we chose the name was that I wanted an Indian acronym and not an anglicised one. I found Mohan a very apt and common name.

Mohan Foundation was formed on the January 12, 1997, al though the idea was conceived in 1995-96. It took us one to one-and-a-half years to give shape to the idea.

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First, public education

After starting Mohan Foundation in Chennai in a small way, the first three years were spent on public education. As we were an NGO, I put in some money and we also got donations from friends. We also raised some funds.

Simultaneously, we published a donor card and also a quarterly newsletter on organ donation so that we could spread the news among the public, doctors and patients.

We made a movie with actor Madhavan and it was shown on the television. That also helped us take the message to the public.

With the help of hospitals and doctors, we created an Organ Registry of patients who are waiting for organs. Two years ago, we passed on the registry to the government of Tamil Nadu.

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Honouring the donor families

I was involved with the first organ donation in 1996 at Ramachandra Medical College. This was a 12-year-old boy who died of snake bite. We transplanted his kidneys into two ladies suffering from kidney failure. After that, there were many organ donations.

In December 1999, we called for a meeting of all the hospitals that do organ transplant as many donor families were not happy with the way some hospitals went about using organs.

They felt corporate hospitals were making money and the community was not benefiting.

After the meeting, we formed a network -- Indian Network of Organ Sharing -- so that when there are multiple organs available in a hospital, these organs could be distributed in a fair and ethical manner to those who are in need of them, that is, wherever the needy patients are.

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From Chennai to Hyderabad

In 2002, we started an office in Hyderabad when some hospitals there came to know about the work we were doing in Chennai.

Now, we have branches in Mumbai, Visakhapatanam and Coimbatore, but requests are pouring in from many cities -- like Delhi, Bhubaneswar, Chandigarh, Jaipur, and Solapur.

Counselling is most important

Once we come to know that there is a brain dead person in a hospital, and two doctors certify that he is indeed brain dead (two certifications, with a gap of six hours, are required), our counsellors start talking to the family.

The most important thing in organ donation is counselling the family. When they go through one of the most traumatic moments of their life, our counsellors have to start talking.

Sometimes counsellors get shouted at, abused and even beaten. But our counsellors are trained to talk in the right way. We are the only organisation in the whole of Asia that has training programmes for counsellors. So far we have trained 105 counsellors in the country.

Once a family agrees for organ donation, our counsellors remain with them throughout the organ donation and even after that.

Organs are given to only the patients in the registry and it is done based strictly on the waiting list. There are almost 900 patients waiting for kidneys. Same is the case with liver and heart too.

We then call the different hospitals where these patients are. It is very transparent and done in the most ethical way so that the organs go to the right patient.

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Future plans

We are working with the government of India and many other states, trying to fill the gaps so that more and more people come forward for organ donation. Most of our recommendations to the government of India have been accepted.

We, as an NGO, have done 500 organ donations from which 1,500 organs have come. In India, we are doing only 0.08 per million organ donation rate, and we are a country 1.1 billion people.

If we do 1 per million rate, we will have 1,100 donors. If we have 1,100 donors, there will be 2,200 kidneys, 1,100 hearts, livers, etc.

Spain has 35 per million organ donation. Developing countries like Greece, Turkey, etc have 3-4 per million donations. Why can't we do a little more?

Our aim at Mohan Foundation is to go pan-India and try and increase the rate to 1 per million. In Tamil Nadu, we have managed to do 1 per million.

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TiECON Chennai's social entrepreneur award

I was happy when TiECON, Chennai bestowed this award on me. It is the recognition of the work done by our team that has been working so hard for years. We made organ donation visible in the society.

We are between extreme grief and extreme joy. There is extreme grief when a death takes place in a family and there is extreme joy when a patient gets life through organ donation.

Being in between, I see both and that is when I realise the value of life and how grief can bring happiness. This is the most satisfying moment in my life.