In India the HPV vaccination uptake is extremely low, it’s virtually not there at all. So there was a need for us to work with the groups that could increase the uptake and we did research. We started the research in 2019 on behaviour change communication to see what works or what are the barriers that were there. One of the barriers, of course, was that they did not have information, the parents who were to vaccinate their daughters, and the most trusted source for them was the doctor, that’s what the research results were.

So for the physicians whom they would trust, we also found that it was the specialists – gynaecologists, paediatricians and general physicians. So for us then we started training, or beginning to train, and that plan was to go to the medical societies in India. It was not tried before for HPV vaccination, so that’s what our work has been, that we trained about 15,000 specialists in India on HPV vaccination, preparing the country for the rollout.

What is the importance of rolling out HPV vaccination programme in India and what are some of the obstacles to that?

In India, 25% of cervical cancer deaths globally happen in India and this is a preventable cancer. What the WHO has set as a target is for elimination, that this cancer particularly can be eliminated. For that, if you do 90% of vaccination, HPV vaccination, of girls between 9-14 years and screen 70% and also treat 90% of women with pre-cancers and cancers. So naturally if we are able to reach that target then we will be able to eliminate cervical cancer in the longer run because these girls would not get the disease in adulthood. So that’s primarily the reason why we are focussing and we’ve been working with cervical cancer for a long, long time. We have enough evidence there which says that the vaccine is safe and effective, it works. So that’s why India needs to focus on HPV vaccination.

What are the obstacles and how can they be overcome?

The vaccine has been licensed in India in 2008 and it is more than 15 years now. Despite that, the uptake has not been very high for several reasons, one being that people are not as aware of cervical cancer. If you don’t know about a cancer then you would not know about protection – how do I prevent myself – because you’re not interested either. These are new discoveries which were not there earlier. So the mothers are not aware of the vaccine because they were never vaccinated. So this is a newer vaccine and generally for cancers you don’t have a vaccine. This particular cancer has a virus linked to it and that’s the reason why you have a vaccine but other cancers don’t. So people don’t have a concept that to prevent a cancer you can actually vaccinate. So this is new information so the people at large are not as aware, that’s one of the things.

Secondly, cervical cancer survivors also are not as visible in India. There’s stigma so you don’t know as much about cervical cancer as well, unlike other cancers. So these are reasons. Also the government needs to roll out prevention programmes which the government of India doesn’t do as much. It’s more the focus is on treatment. That is the precise reason why prevention has not really picked up the way it should have but we are tyring to, and many groups in India are trying to push it through as much as possible so that we don’t get the disease. It’s a poor country so we cannot let people die prematurely and go to a later stage when they have to spend a lot of money and move towards poverty. Which is the reason why prevention is what we need to work on or focus on in India.

Do you have any success stories you would like to mention?

NGOs, these are organisations, smaller organisations. So for us, as a foundation of India, one of the strengths that we have had over the years is to work with the government and plug the gaps that are there, help them restructure their programmes or strengthen their programmes, not run a parallel programme because we will not be able to sustain that. But rather feed into the bigger programme, that’s one.

Second, building evidence. Advocacy is one of the areas. So the kind of work that we have done, especially in HPV vaccination, what we can talk of, is we are part of the IARC study, dosage study, that is there for the past 15 years. So India has its own evidence, number one, it has been able to contribute to the dosage study when the three came to two and two came to one now. So one single dose works for HPV vaccination. So the Cancer Foundation of India is an organisation that has contributed to that data as well by being one of the partners of IARC.

We work with advocacy so we were the first state in the country which rolled out HPV vaccination in India. So it was our advocacy that we have done. So we have tried to act as a pressure group; at times we have also tried to act as the group that generates local evidence which feeds into the bigger pool of evidence in the country. Because many of the evidence in India that you get is from the West, which is one of the things that we think, and restructuring, as I said, is one of our stronger areas of work over the years.

Is there anything else you would like to add?

I think generally that countries like India where the disease burden of cancer is very, very high, the focus should be on cancer prevention because you don’t have as many super-speciality hospitals across the country. So every time when anybody gets cancer most of the time it is diagnosed very, very late, mostly in stage 4, 3 or 4, and it becomes almost impossible to treat or cure.

You don’t have that many government hospitals, people have depended on private hospitals where the cost is exorbitant when you go to stage 4. They also don’t survive. So people generally have a perception in India that if you get cancer you die. So there is no point in treating them. But people don’t have the concept that people will survive if it is diagnosed early or it can be prevented, so naturally people don’t work with prevention. Or common people, like if they’re using tobacco they don’t see a purpose of giving up because people will die anyway.

It's very important that government and organisations, the CSOs, should work more and more in cancer prevention so that it’s diagnosed early and those lives could be saved and premature deaths could be arrested.