Seven years and out: HPV Action

In 2013, gender neutral vaccination was nothing more than a pipedream, an idea. Girls aged 12 and 13 had received the HPV vaccination for years, since 2008, but their male counterparts did not. It was around the time when HPV was beginning to overtake 'traditional' risk factors for oral cancer such as tobacco use and alcohol, and the threat to public health was very real. Something needed to be done.

I spoke to Men's Health Consultant and former HPV Action Campaign Director, Peter Baker, the man largely responsible for the successful advocacy campaign that led to the introduction of HPV vaccination for boys in 2019, about the intervening years.

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To what extent would you agree achieving gender neutral vaccination the biggest success story for public health in that time?

PB I can say with confidence that gender-neutral vaccination is a major step forward for many, many areas of public health. You only need to look at the areas of health the programme will improve - cancer, sexual health, men's health, gay men's health, women's health, oral health and public health - to understand that this is the case.

For the HPV Action coalition, the tireless work to build a watertight case to put to the JCVI, the government's vaccination advisory committee, proved a major success. It took five long years, with many obstacles and barriers to overcome - and at some points it looked like it might never materialise - so we can all look back on the campaign with some pride.

How do you think the success was achieved?

PB We managed to create a genuinely multi-disciplinary coalition. The campaign finished with 51 member organisations from a very wide range of backgrounds and disciplines. We had some important non-health organisations on board too, such as the National Union of Students and the National Education Union.

The composition of the coalition may have been broad and wide-ranging, but we had one single goal: gender-neutral vaccination. There were no others. This made it easy to unite behind. Everyone brought something to the table, which was incredibly satisfying.

Looking back, there were three key areas we needed to influence. The key battle was with the JCVI. Without the support of the wider medical and scientific community - and a strong evidence base - the campaign would likely have not achieved the success it did. We wrote and submitted papers to journals to build that awareness and evidence base, we presented to medical and scientific conferences and we produced consensus statements, one of which had over 100 signatories from leading experts in their field.

You can't get anywhere without political support and lobbying. Thankfully, our goal cut across politics and we had cross-party support. The Conservative MPs John Baron and Sir Paul Beresford, chair of the All Party Parliamentary Group on Dentistry, were very helpful and their colleague Sir Roger Gale organised a crucial parliamentary debate on HPV vaccination in 2018 about a month before the JCVI announced its final decision.

The third area was the media. Again, because the campaign cut across so many areas of healthcare, we had interest from a number of media outlets. Towards the latter end of the campaign the Mail on Sunday ran a series of articles on what the campaign was and why it was important and featured case studies of people who went through unnecessary suffering due to the vaccination not being available to them.

Also, the Throat Cancer Foundation threatened the government with judicial review over the failure to offer boys HPV vaccination on the grounds of sex discrimination. While the case ultimately did not reach the courts, lawyers were confident that there was a very strong case. This may well have influenced the JCVI's final decision.

You mention there were challenges. What were some of the obstacles you had to overcome?

' For the coalition, to work tirelessly to build a watertight case to put to the JCVI, was a major success. It took five long years, with many obstacles and barriers to overcome - and at some points it looked like it may never materialise - so we can all look back on the campaign with some pride.'

PB One of the big challenges was our funding, or lack of it. The campaign was delivered on a shoestring budget with funding on an entirely voluntary basis from our members. We decided that excluding any pharmaceutical industry support for our advocacy work was a vital principle for us to keep to, no matter how difficult things got. At times we were running on fumes. I think it's an incredible achievement to have brought about a significant policy change with such a relatively small budget.

The JCVI's interim decision not to vaccinate boys, made in 2017, was at the time a major setback. Their rationale was mainly that the UK had a high enough percentage of vaccinated girls to protect the boys. While they were correct to suggest there is a large percentage of girls vaccinated in the UK - higher than in most European countries - they were wrong to assume this was sufficient. The male partners of girls who missed out on the programme and men who have sex with men (MSM) would remain at risk. There was also an issue with the proportion of cancer cases the JCVI attributed to HPV. Their figures, especially for oropharyngeal cancer, were at the very low end, which mystified pretty much every member of HPV Action as well as many independent experts.

' For the coalition, to work tirelessly to build a watertight case to put to the JCVI, was a major success. It took five long years, with many obstacles and barriers to overcome - and at some points it looked like it may never materialise - so we can all look back on the campaign with some pride.'

We had to challenge JCVI's dogmatic adherence to the narrow issue of cost effectiveness. We consistently made the point that this was not the only factor that should be considered and we encouraged the JCVI to consider ethics, equity and public health as well as the requirements of anti-discrimination legislation.

There was only one issue where we failed. After JCVI finally recommended gender-neutral vaccination, we called for a catch-up programme for all the teenage boys who had missed out over the five years JCVI was considering its decision. Our arguments on this point were unfortunately rejected.

Do you have any concerns that COVID-19 will affect the success of the programme?

PB I'm worried about the disruption to the HPV vaccination programme because of school closures. The JCVI has recommended ensuring that all boys and girls at the eligible age get at least one dose now and the second can follow at an extended later date. Some areas of the country - including the Isle of Wight and Lincolnshire - have established drive-in vaccination clinics but is clearly essential that the normal programme is resumed as soon as possible and that there is a catch-up for those who missed out. The same is true for cervical cancer screening.

Of wider concern is the possible impact of COVID-19 on vaccine confidence. We don't know how this will play out, but it is likely that the anti-vaxxers will seek to capitalise on any problems with a COVID-19 vaccine and this could have an impact on HPV vaccination. We have already seen the huge impact of HPV vaccine misinformation on HPV vaccination uptake in Ireland, Denmark and Japan. We must be ready to push back strongly against vaccination fake news and dentists along with other primary care professionals have a part to play in this.

And what of HPV Action now you've achieved the goal you set out to achieve?

PB As of 30 September the campaign ceased operations, but the work has been picked up by the European Cancer Organisation. Its new campaign to eliminate HPV-caused cancers across the European region is keen to learn from HPV Action's experience and I and many of the organisations that supported HPV Action are lending support.

For all of the organisations involved in the coalition, to be able to say they were involved in bringing about what I consider one of the single biggest recent steps forward in public health is incredible. For me, I can look back upon my time at HPV Action with a sense of great achievement. If I achieve nothing else in my career, to have helped deliver a practical solution to improving men's health and saving lives will always make me feel very proud. ◆

Peter Baker was Campaign Director for HPV Action from 2013-2020 and now works as a consultant for the European Cancer Organisation's HPV Action Network. He is also Director of Global Action on Men's Health. In 2018, Peter was the winner of the Royal Society for Public Health award for Outstanding Contribution to Championing the Public's Health for his work on HPV vaccination.