Making a difference: Changing lives and meeting need
Professor Vaskar Saha’s research is helping to significantly reduce mortality rates in children being treated for cancer in India. Having led research which helped increase survival rates among children with acute lymphoblastic leukaemia (ALL) by 10% in the UK, he splits his time between The University of Manchester and the Tata Medical Centre in Kolkata, India. Here he talks about his mission to transfer global standards of care to a low resource country.
For a child to die in 2019 of a disease that is curable is unpalatable. Acute lymphoblastic leukaemia (ALL) is curable. Survival rates of children with ALL in the west have risen from 60% to 90%. 80% of children globally live in countries with limited resources and here ALL continues to be a fatal disease. Globally, the survival rate for children with ALL is therefore only around 40%. We need to develop strategies, using the lessons learnt from the west to improve outcomes in children with ALL globally.
450 children in UK are diagnosed with ALL each year and of these, 400 will survive. In India it is more challenging. A number of dedicated paediatric cancer centres are well established with reasonable infrastructure, but these only treat 10% of the patients. Furthermore, survival rates of children with ALL treated at these centres has remained static at 65% over the last three decades. Whereas, in the west, survival rates for children have risen to 90% in that same time.
In India, the number of children diagnosed annually is 15,000. Currently, 6,000 children are dying every year from a potentially curable disease. If we can improve outcomes in India by 10%, then an additional 1,500 children a year will grow up to lead normal lives.
“At the end of the day wherever I am, Manchester or Kolkata, I’m a paediatrician and I do this because it’s my vocation and passion to look after sick children and their families.”
India is a huge and diverse country. Pockets of wealth exist with pockets of dire poverty, such as in Kolkata where my Indian work is based. But what happens then if you are poor, live in the Kolkata region and your child gets cancer? What are your choices? You could uproot your family, perhaps three generations living together, in order to travel to the other side of India to seek treatment for your poorly child as you’ve heard there is a good cancer hospital there. Or you could stay and hope for the best.
That was the reality. Modern cancer centres in this region, particularly those who catered specifically for children, were few and far between. For a child from Kolkata to receive treatment and hopefully survive, families were forced to leave their jobs and homes and travel to find a cure. While many centres subsidise treatment for children with cancer, it is the non-treatment costs that can be crippling. Many families incur heavy debts and are reduced to poverty. In many cases, it takes the resources of a whole village to help a family dealing with cancer.
The need for a cancer hospital in Kolkata was critical. Fortunately the Tata family recognised this and set up a hospital, Tata Medical Center (TMC), to save families having to endure separation and months or years of poverty and distress caused by a loss of income and relocation. I was approached and asked to work with them in looking at improving cancer survival rates in children and thanks to the support from the University of Manchester, I obviously said yes.
There are many good hospitals across India but they often exist and work in isolation without the exposure to the international research community which we in the UK take for granted. To address this we started by bringing everyone together, sharing our knowledge and starting discussions. With the help of the international community, we also made it possible for people to participate in focused meetings abroad. Small things in research can make a big difference; how you give the medicine, when you give it, how you care for the patients. I wanted us to document this and share it amongst ourselves.
That’s what we do in the NHS and that’s how we know we can find things out, we share our knowledge. Most importantly, we knew that, whilst in the west treatment for children with ALL is highly successful, it does not readily translate to countries with fewer resources. We wanted to change this and to help families whose children have cancer.
Size and scale
Kolkata has a hinterland the size of Western Europe. Before TMC, patients from this region would have to travel up to three days to get to Mumbai, which has a good cancer hospital. We didn’t have one here, but thanks to Mr Tata and the Tata Trusts, we do now.
TMC subsidises treatment through the help of a number of charities. In partnership with St Jude India, it provides safe, secure and free accommodation for families whose children are being treated. Before this, mum and perhaps a child and grandparents would have to go back home eventually as they couldn’t afford to stay together.
The dire state of our fragmented cancer care was pulling families apart. We may have cured the child but, ultimately, we were driving families apart and deeper in poverty by forcing them to travel and spend whatever money they had on accommodation to stay together. But now they can be treated in Kolkata, they don’t need to travel.
We began by working with the five best paediatric oncology centres. We worked together to agree standards of care and formed the Indian Childhood Collaborative Leukaemia (ICiCLe) group. We have achieved multi-centre standardisation for the very first time, based on the principles of the NHS. We have implemented agreed, uniform standards of care and treatment across all our cancer treatment centres.
Need for standardisation
It used to be that one in five Indian children used to die due to poor treatment and one in five would die through relapse. Poor treatment was due mainly to the absence of standardisation in testing and treatment. With help from colleagues in the UK and across the world, we’ve successfully integrated modern diagnostics and monitoring into routine cancer care. This not only saves lives, it is also saves money. Children who don’t require intensive treatment are identified early and we are using IT tools to monitor and manage patients so they can return home early.
Over the past four years, the ICiCLe group has treated over 2,500 ALL patients. During this time, deaths from treatment have halved and our survival rates have increased from 60% to 75%. More importantly, we have made the hard journey taken by families to protect their most precious possessions a little bit easier.
Not all cancer centres in India are in our hub, so the challenge is how we can provide and develop support systems for these other centres. We need to bring them together to talk and share experiences. We also need more sophisticated testing in all centres to further improve survival rates.
We need to ask ourselves how we take most advantage of the current and emergent technologies that could help us to make processes and treatments cheaper, therefore increasing the likelihood that these will be taken up by the other hospitals. We have developed a patient database which allows for real-time information sharing. This is has greatly improved our ability to share data and learn from each other.
Research takes time but already I can see the difference that these small changes are already making; it’s tangible and our patients don’t take this care and treatment for granted, they cherish it. At the end of the day wherever I am, Manchester or Kolkata, I’m a paediatrician and I do this because it’s my vocation and passion to look after sick children and their families.
Manchester’s socially responsible approach to information and knowledge sharing is helping to save the lives of children in India.