Breaking the taboo: “No one wants to talk about anal cancer”

“Laure Rolle founded NoTaboo.fr from her hospital bed while undergoing treatment for cancer, which is preventable with the HPV vaccine.”

It wasn’t her plan to start a nonprofit advocacy organization to raise awareness about human papillomavirus (HPV), but when Laure Laure was diagnosed with cancer at age 47, she took action. I was motivated to do so.

The problem is the lack of open discussion about certain forms of cancer. She started NoTaboo.fr to fight the stigma against anal cancer and other cancers caused by HPV. “No Taboo was not created to remove the taboo around HPV cancer, and more specifically anal cancer,” she said. Today’s vaccine.

“No one wants to talk about anal cancer or even say the word ‘anal.’ Many patients suffer alone after being diagnosed with anal cancer, as they are reluctant to talk openly for fear of being judged. ”

No Taboo works to raise awareness of HPV vaccination for all genders. Representing patients’ voices at medical conferences and webinars. Providing support to her HPV patients and their families during and after treatment. “Treatments for anal cancer can cause unpleasant side effects and are sometimes difficult to manage,” she points out.

The organization focuses on sharing evidence-based knowledge and is one of 10 members: HPV removal (No HPV tomorrow). We asked Lorre about her work and the stigma surrounding overlooked diseases.

How common is HPV?

HPV is so common that nearly everyone who is sexually active, regardless of gender or sexuality, will contract the virus at some point in their life. In most cases, our immune system rejects the virus. Unfortunately, in 10% of cases, the virus remains silent, increasing the risk of developing cancer.

More than 6,400 people in France are diagnosed with HPV-related cancer each year. Cervical cancer is the most common HPV cancer. However, HPV causes other cancers that affect men and women.

HPV contamination occurs through mucous membranes: mucous membrane to mucous membrane, mucous membrane to skin, such as on the hands. HPV can be transmitted through intimate caresses, so condoms are not completely protective.

Why is there a stigma about some HPV cancers?

I founded NoTaboo.fr to break down the stigma based on outdated sexual stereotypes and ignorance about how common HPV-related cancers are.

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

Personally, I believe it is important and urgent to lift the taboo around HPV. Vaccines exist to prevent some of these cancers.

Please tell us about the dissemination of the HPV vaccine in France.

France is far behind the examples of Australia and Sweden. Vaccination experience in schools in Grand Est (a region in north-east France) found that 20% of parents agreed to vaccinate their children and only 16% of students were vaccinated . In France, pharmacists, nurses and midwives can be vaccinated from the age of 11. We believe this is a good way to ease access to vaccination. Another way to improve vaccination rates is to allow all young people up to the age of 26 to receive a booster vaccination. This will allow unvaccinated youth to make their own vaccination choices.

How can we strengthen advocacy?

To improve vaccination rates among girls and boys, we first need to simplify and speak with a single voice. You need to invest in regular, multi-year campaigns. These campaigns must be well synchronized to ensure similar information is found in clinics, pharmacies, and schools. This may also be relayed on other media such as television, news outlets, and social media such as TikTok.

People don’t know that HPV can cause head and neck cancer, anal cancer, vulvar cancer, vaginal cancer, and penile cancer. Co-developed by Demain Sans HPV Flyer for teenagers and parents To raise awareness.

What social media platforms is No Taboo active on?

This organization was founded from the hospital during my treatment in 2022. But I’m proud of what I’ve accomplished so far. The best way to see our work is on sites like notaboo.fr. Instagram, Facebook, twitter and linkedin.

Can you tell me about the “Reservation” feature on your website?

The booking feature is intended to facilitate the exchange of information between our organization and patients looking for specific information. We don’t have many appointments, but for some of our patients, this is a way to start a dialogue and 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 ask some companies to support our actions. We also want to participate in sporting events in France and abroad to maximize our impact.