Breaking the taboo: ‘No one wants to talk about anal cancer’

It was never her plan to found a non-profit advocacy organisation to raise awareness of human papillomavirus (HPV), but when Laure Roulle was diagnosed with cancer at the age of 47, she was inspired to take action.

The problem: a lack of open discussion about certain forms of cancer. She launched NoTaboo.fr to challenge the stigma surrounding anal and other cancers caused by HPV. ‘No Taboo was created to remove taboos about HPV cancers and, more specifically, anal cancers,’ she told Vaccines Today.

‘No one wants to talk about anal cancer, or even say the word ‘anal’. Many patients suffer from loneliness after being diagnosed with an anal cancer, because they are not comfortable discussing it openly for fear of judgement.’

No Taboo is working to raise awareness of HPV vaccination for all genders; representing patients’ voices in medical congresses and webinars; and providing support to HPV patients and their families during and after treatment. ‘Anal cancer treatment can cause side effects that are uncomfortable and sometimes difficult to manage,’ she notes.

The organisation focuses on sharing evidence-based knowledge and is one of 10 members of Demain Sans HPV (tomorrow without HPV). We asked Laure about her work and the stigma surrounding an overlooked disease.

How common is HPV?

HPV is so common that nearly all sexually active people get the virus at some point in their lives, regardless of gender or sexuality. In most cases, our immune system rejects the virus. Unfortunately, in 10% of cases, the virus will stay silently with a high risk of developing into cancer.

In France, every year, more than 6,400 are diagnosed with HPV-related cancer. Cervical cancer is the most frequent HPV cancer. However, HPV is responsible for other cancers which impact men and women.

HPV contamination occurs through mucous membranes: mucosa to mucosa and mucosa to skin such as hands. Because we can get HPV through intimate caress, condoms are not fully protective.

Why is there stigma around some HPV cancers?

I set up NoTaboo.fr  to break down the stigma that is based on outdated sexual stereotypes and ignorance about how common HPV-related cancers are.

When we speak about HPV, we often focus on cervical cancers. HPV causes many other cancers impacting all genders, including head and neck cancers, anal cancers, vulvar, vaginal and penile cancers.

Personally, I think it is important and urgent to lift taboos about HPV. A vaccine exists to prevent some of these cancers. 

Tell us about HPV vaccine uptake in France.

In France, we are far behind the examples set in Australia and Sweden. The vaccination experience at school in the Grand-Est (a region in north-eastern France) shows that 20% of parents consented to the vaccination of their child and only 16% of students were vaccinated. In France, pharmacists, nurses and midwives can vaccinate people from 11 years of age. We are confident that this is a good way to facilitate access to vaccination. Another way to improve the vaccination rate is to allow a catch-up vaccination for all young adults up to 26 years old. This allows young adults who have not been vaccinated to make this choice on their own.

How can advocacy be strengthened?

To improve our vaccination rate among girls and boys, we should first simplify and speak with a single voice. We must invest in a regular campaign over multiple years. These campaigns should be well synchronised to ensure that we find similar information at the doctor’s office, in pharmacies, in schools. This might be also relayed on other media such as TV, the press and social media, including TikTok.

People are unaware that HPV can lead to head and neck, anal, vulvar, vaginal, or penile cancer. Demain Sans HPV has co-developed flyers for teenagers and for parents to raise awareness. 

What social media platforms is No Taboo active on?

This organisation was created from the hospital during my treatment in 2022. However, I am proud about the accomplishment done so far. The best way to see our work is on notaboo.fr and on Instagram, Facebook, Twitter and LinkedIn.

Could you tell us about the ‘appointments’ facility on your website?

The appointments capability is to facilitate exchange between our organisation and patients looking for specific information. We do not have a lot of appointments but for some patients it is the way to initiate a dialogue and to feel less alone.

What are your plans and hopes for the future?

The main plan is to continue to make noise about HPV to increase prevention and to engage some companies to give us support for our actions. We also want to participate in sporting events in France and beyond to maximise our impact.