The Throat Cancer Foundation, HPV and How we changed a government’s mind

March the 4th this year is International Human Papillomavirus (HPV) awareness day.  It is a global campaign highlighting the fact that HPV is a public health issue that affects us all, either directly or indirectly and is a contributor towards several types of cancer, including throat.

The day itself will help many people better understand HPV’s impact on their lives and the action that can be taken by them to both stop the virus spreading and thus protect themselves from developing an HPV related cancer.

The World Health Organisation (WHO) states that over 80% of sexually active people will be infected with HPV at some point in their lives.   For most there are no known visible side effects and the body’s immune system will naturally fight it off after a few years.  However, for some, it can lay dormant in the body for a period of 20-40 years before developing into HPV related cancer, that include cervical, penile, vaginal, anal and also throat cancer.

HPV is known to be associated with 1 in every 20 (5%) of all cancer cases worldwide.  Preventing HPV reduces your risk of developing a cancer and it is part of the goal of many countries to implement education and vaccination programmes and to help eradicate HPV related cancers once and for all.

In 2010, successful businessman Jamie Rae, was diagnosed with oropharyngeal (a type of throat) cancer which had been caused by the HPV virus.   Jamie had successfully built up a global recycling business over ten years starting out from his back bedroom to creating 200 plus jobs in sites around the world, including the UK, Hong Kong and Turkey.  His diagnosis came at a time when he was in the process of selling his business.

It was during his treatment that be became alarmed and concerned about the lack of resources, information and support available to those facing the disease, so two years after his diagnosis and treatment established the Throat Cancer Foundation (TCF) to provide what was missing.

Jamie survived his cancer, but he found the treatment for it extremely aggressive and still after several years suffers from a number of ongoing health issues.  At the time he had not appreciated what HPV was, how he got it, nor how it had caused his cancer.  He set about educating himself about HPV, what its impact was, as well as diagnosis and mortality rates.

He was shocked to discover that there was already a vaccine available that could offer protection against HPV related cancers but that it was only given to teenage girls and had been so since 2008 as part of a nationwide campaign to protect them against developing cervical cancer.  There was no such protection for boys who were still being exposed to the risks of HPV and developing not just a range of cancer in adulthood, but also conditions like genital warts.

At the time the advisory body on public health issues to the UK government, the Joint Committee for Vaccination and Immunisation (JCVI) advised them that it was not cost effective to give boys the vaccine and the boys would be protected by ‘herd immunity’.

Shocked and angered about the government’s position on excluding boys and believing this to be discriminatory, Jamie through TCF begin a nationwide campaign to bring to public consciousness what the impact and contribution HPV has to cancers and that there was also an urgent need for boys to be vaccinated to give them the same level of protection already given to girls and therefore reduce future incidences of HPV related cancer cases and save more lives.

Part of the campaign was to also try to persuade the government to change its mind and position on excluding boys from vaccination.  More voices were needed to make this happen and so in 2013, TCF led by Jamie, along with the founder of one other organisation whom Jamie had built a close working relationship with, Tristan Almada, of the HPV and Anal Cancer Foundation, became founders of a lobbying body called HPV Action.

HPV Action’s main aim was to achieve gender-neutral vaccination in the UK, by both raising awareness and lobbying the UK government. TCF contributed the funds needed to launch the campaign and helped to sustain the organisation over the next five years. They also approached and invited Peter Baker, to become ‘Campaign Director’ for HPV Action, as at the time he had been building a strong reputation as a consultant for highlighting and campaigning for men’s health issues.

The body at the time grew and boasted over 50 public health organisations who either operated in the field of HPV or whose work was impacted by the virus.  HPV Action was soon recognised as an immensely powerful lobbying voice for HPV vaccination.

The campaign itself gained traction and support from many quarters of the country, including cancer survivors, family members who lost loved ones, health campaigners, politicians, journalists, and members of the public keen to see boys protected.  However, the UK government was only taking its advice from the JCVI who themselves were still deciding not to vaccinate boys on the grounds of costs, but eventually abdicating responsibility by recognising the protection vaccine would give but not recommending that the government should vaccinate.

Frustrated by the lack of progress Jamie decided that the time had come to force the government to undertake a judicial review on this very important public health issue.  In February 2018 TCF acting alone instructed lawyers to threaten legal action against the UK government on the ground of sexual discrimination if they did not reverse their decision and stop excluding boys from the vaccination programme.

As of July 2018, the fight was won, the government announced that it would reverse its policy and announced that boys would begin receiving the HPV vaccine and therefore benefits from the protection against HPV related cancers from autumn 2019.   We announced to the national press at the time, ‘We did it!’   Gender neutral HPV vaccination had been achieved after the threat of legal action from TCF.

Nowadays TCF operates both nationally and internationally and aims to reduce the impact of throat cancers by offering support, advice and reassurance to those affected, not only to the person who has cancer, but to their friends and loved ones as well; making sure they have access to the most up to date information, knowledge about available treatments and what to expect in recovery during their illness. It still campaigns to highlight the issue of HPV and the importance of ensuring people are educated and vaccinated against the virus.

Its work is backed and guided by a team of leading world class cancer experts and consultants operating in the fields of research and treatment for the illnesses they are fighting.

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