Human papillomavirus (HPV) vaccinations have achieved a huge reduction in cancer incidence. Recently-published research from the UK found that vaccination has almost eliminated cervical cancer in women in the vaccinated age groups.
But it is the real-life experience of people who have suffered HPV-related cancers that provides the most compelling evidence for improving access to vaccination and screening services across Europe.
That is why the HPV Action Network, run by the European Cancer Organisation, has today launched ‘HPV Testimonies’, an online resource containing the very personal stories of men and women who have direct experience of the different cancers caused by HPV.
Steve Bergman, a 62-year old actor from the UK, describes his shock at being diagnosed with throat cancer after having problems swallowing food. Following a debilitating course of surgery, chemotherapy and radiotherapy, he has become a passionate advocate of HPV vaccination for all boys and girls.
“Had the vaccination been on offer when I was a much younger man, I would have absolutely jumped up the opportunity to have that. It's really important for generations who are coming through now that the incidence of HPV cancer in men will hopefully reduce. My cancer probably could be related back to 30, 40 years ago. So it's really important that everyone is vaccinated against HPV.”
Steve also talked about his experiences during a session on HPV at the European Cancer Summit today. His was the first presentation in the session, highlighting the importance of the ‘patient voice’ in the effort to eliminate the cancers caused by HPV in Europe.
Almost 100,000 cancer cases are caused each year in Europe by HPV. It is not only the primary cause of cervical cancer but also causes vaginal, vulval, penile, anal and several types of head and neck cancers. While women are more commonly affected by HPV cancers, up to 30% of cases are in men.
Professor Daniel Kelly, Co-Chair of the European Cancer Organisation’s HPV Action Network, said:
“The statistics do not tell the real story of what it means to develop a cancer caused by HPV, or of the trauma that both the cancer and its treatment causes to patients, as well as their family and friends. Together with the science and the statistics, the testimonies we are publishing today make a very powerful case for action. I hope that all politicians and policymakers will read them and consider how they can improve their vaccination and screening services so that we can speedily eliminate all cancers caused by HPV. This is one pandemic we already have the knowledge and technologies to overcome.”
Christina Fagerstrom, a 32 year-old from Finland, was invited for a routine screening (Pap) test but ignored it. A year later, she experienced changes to her monthly cycle and investigations revealed cervical cancer. She had surgery and although he is now recovering well, she is unsure whether she can have children.
“Unfortunately, I was a couple years too old when they started giving the HPV vaccination to kids in Finland. If I could travel back in time, I would attend the Pap test as soon as possible when I was first offered it.”
The testimonies illustrate how HPV can affect anyone and reveal the emotions and experiences of people as they dealt with their diagnosis and the treatments that followed. They talk about the impact on their lives and on those around them, and whether they have been able to get back to a ‘normal’ life.
They also give their thoughts on HPV itself and the availability of vaccination, and whether they would like to see universal vaccination for men and women. And they send a message to patients and policymakers so that others can learn from their experiences.
These examples of ‘lived experience’ are very timely because the EU member states are now considering how they will respond to Europe’s Beating Cancer Plan. The Plan contains major recommendations on vaccination and screening and decision-makers throughout Europe should keep the voices of patients at the front of their minds as they make their plans.
Citizens who might be hesitating to get vaccinated or screened should also listen to those who have been affected by cancers caused by HPV. These are very safe, straightforward and potentially life-saving procedures.
Professor Rui Medeiros, Co-Chair of the European Cancer Organisation’s HPV Action Network, said:
“Europe’s Beating Cancer Plan calls for HPV vaccinations for all young people and improvements to cervical cancer screening programmes. It is now up to the EU’s member states to implement these recommendations and the European Cancer Organisation stands ready to provide whatever support we can. We would also like to see effective vaccination and screening programmes introduced across the whole European region, not just the EU.”
HPV Testimonies can be accessed here.
 Falcaro M, Castanon A, Ndlela B, et al. The effects of the national HPV vaccination programme in England, UK, on cervical cancer and grade 3 cervical intraepithelial neoplasia incidence: a register-based observationbal study. The Lancet, 3 November 2021. DOI: https://doi.org/10.1016/S0140-6736(21)02178-4