CHENNAI: At the turn of the millennium, paediatric surgeon Dr Priya Ramachandran had a moment of epiphany. One of her patients, who had been diagnosed with cancer and began undergoing chemotherapy sessions, abandoned it mid-way. Several months later, when she resumed, the cancer had advanced. When Dr Priya met the child’s mother, she said that she had to sell off her possessions for her child’s treatment, and she didn’t have anything more to pawn off to continue the course further.
That’s when Dr Priya decided to start a foundation to help children from the lesser-privileged pockets by paying for their treatment. Thus, the Ray of Light Foundation was born in 2002. As it completes 20 years, nine children who got cured of cancer with the NGO’s help met Prime Minister Narendra Modi, on the sidelines of the inaugural function of the Chess Olympiad. Dr Priya walks us through the journey and the foundation’s work, while insisting that childhood cancer is curable.
Excerpts follow.
Tell us all about the origin of the foundation.
When I came back to India after my post-graduation training abroad, I found that the survival rate of children with cancer was about 40% while in the West it was about 85-90%. I decided to start an NGO that will take children who cannot afford treatment, see them through the entire course and give them whatever it takes to ensure that cancer is cured. Caring for cancer was never the goal, curing cancer was.
How did you raise funds for treatment?
Treating one child costs at least Rs 6-Rs 7 lakh. Back in 2002, there were no CSR schemes. When I went to some companies asking for money, they said for Rs 5-Rs 6 lakh they could vaccinate a village! I spoke to other NGOs working in different fields, in Chennai, and asked about fundraising. I learned that one fundraising event will give you Rs 5 lakh. So, I decided to approach individuals and philanthropists. At that time, the art market was booming. A friend, who is an art curator, advised me, and I bought a painting for about Rs 1 lakh. I then waited for a year for that painting to appreciate and when it went up to Rs 3.5 lakh she told me to sell it. That was the first donation to Ray of Light and that was the only money I have put into it. After this, I started following the art market. My friend Sharon Apparao, of Apparao Art Gallery, introduced me to a lot of artists. Whenever I got a weekend free, I used to go to Mumbai or Delhi or Kolkata to meet artists, talk about the foundation and get works of art from them. From 2002-2010, we were limping along.
In 2010, I started collecting artworks, and in January 2014, we held the art auction. We got paintings worth Rs 90 lakh. Meanwhile, I was treating two-three children a year with the small amounts of money I was able to raise (from individuals), probably spending Rs 15-Rs 20 lakh a year. In the auction, we made some of the children who had been cured, the first batch 2002-05 do a fashion show wearing clothes from the Lakme Fashion Week. We had a picture of them when they were undergoing treatment in the background. That night, we sold the paintings for close to Rs 2 crore. That gave the foundation a boost. The government, in 2014, implemented the CSR scheme strictly and I could approach companies. So that auction plus CSR helped us raise a lot of money and suddenly we started treating 20 children a year. We were able to raise Rs 1-Rs 1.5 crore every year. Across the board, our survival is 85% which is what is there in the West. I wanted the PM to meet those children and see the benefit of the CSR scheme in person.
Tell us about your meeting with the Prime Minister.
I wrote to the PM office and we were given an appointment to meet after the function at Nehru Stadium. I accompanied nine children and he spoke to each one of them and asked them what they wanted to do in life. Two of the children in the group had lost their father to suicide. When I told the PM about them, he was kind to them. It was a nice meeting where he came down to the level of children and interacted with them in a way they would understand.
We had taken a drawing of the PM made by one of the children, Divyadarshini, who is in Salem. The other kids brought a photograph of themselves of when they had cancer to show him how they looked then and now. He signed all of them and took pictures with them too.
What have been your learnings in these 20 years?
Over the last 20 years, I have observed that fathers commit suicide when they know their child has cancer. Among those we have treated, 10 fathers committed suicide and two mothers deserted their children. Largely, this is because of the fact that society is not aware that cancer in children is curable.
We have had failures. Every time when some of our children don’t make it, it is heartbreaking. When a child is diagnosed with cancer, life has thrown a curveball at the family. When the father deserts the family, and the mother is emotionally stunted, we make sure that the child is absolutely fine and is taken care of. But though these kids come from lower socio-economic backgrounds, they are angels. They are so well-behaved, adjusting, and kind even though life has not been kind to them. They know not to expect much from life. Even in their hardest, most painful moments, they turn around and comfort their mother. The children are strong and resilient. People who study societies will tell you differently that when one comes from harsh circumstances, they end up being harsh. That has not been my experience.
How do you select children for the treatment?
Kanchi Kamakoti Childs Trust Hospital is a tertiary care pediatric hospital. Children come there with various ailments. They rarely come with cancer but they come with fever, cough or cold. When they are diagnosed with cancer (after blood work-up), they are referred to an oncologist. This oncologist identifies those who need our help and contact us. The oncologists also talk to the parents and convince them.
Have there been any dropouts?
We have treated 210 children and we have had no dropouts. The mother becomes a warrior for her child. When we say he/she is going to make it, she lives on that hope and thrives on it. Hope is what makes her wake up every morning. Faith and hope are wonderful things.
Is there enough awareness of childhood cancer being treatable?
There is not much awareness of paediatric cancer. That was one of our goals while meeting with the PM; to reiterate that cancer in children is curable. The children he saw that day are going to lead normal lives. Some of the children from the first batch are married, and employed. There is a 15-20 per cent chance of recurrence, but it can be treated.
What are the challenges?
As a paediatric surgeon, I work closely with paediatric oncologists. One of the big mistakes that happen, I think, is that children with cancer are not treated in a children’s hospital. You need to treat them in a children’s hospital because children get all kinds of complications during chemotherapy. They become blind, get strokes, renal failure, and you can’t have a paediatric nephrologist, a paediatric endocrinologist, a paediatric infectious diseases person in every cancer hospital that treats adults. It is not viable. So when children need these specialists, they are most often seen by adult specialists. Adult medicine is very different from paediatric medicine.
Although there are government hospitals across India treating cancer Ayushman Bharat scheme, state healthcare insurance and schemes paediatric cancer is a niche speciality where it is not enough if you put money into it. You have to ensure that the money is put to proper use by doctors trained to take care of those children. Now there are more training programmes for pediatric oncology too.
How can the taboo around paediatric cancer be eliminated?
By showing off these children, showing off how they made it. We have to talk about the positive story. That’s why I thought meeting the Prime Minister would make a huge difference. If the Prime Miniter of a country has met the children, it means that he thought that the cause was worthy.
Forwarding goodwill
The Ray of Light Foundation donated `1.3 crore to Childs Trust Hospital in 2017 to build a bone marrow transplant unit. They also donated four specialised intensive care rooms in the hospital. There are positive and negative pressure rooms to take care of the children when they become sick. This is to protect the children from the infection outside and for them not to spread if they have a bad one.