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HPV and Anal Cancer: The Last Taboo

A competitor completes a 72-hour rowing race for the HPV and Anal Cancer Foundation
A competitor completes a 72-hour rowing race for the HPV and Anal Cancer Foundation

With all the scrutiny on charity fundraising at the moment, many charities need to regain the trust of the public. But this is even more of an uphill struggle for charities that need to educate people first before they can ask for donations.

MyDonate spoke to the HPV and Anal Cancer Foundation to understand how a charity that deals with a taboo or social stigma can simply and effectively raise funds and awareness.

Gabby Brunton, account manager at Street & Co, who supports the HPV and Anal Cancer Foundation, explained that "educating or raising awareness about any charity is difficult, but it is especially hard when addressing a marginalised and stigmatised group of cancers".

"Our emails often hit spam filters as they contain words such as ’anal’, but we never tone down our message," she said. "One of our purposes is to educate the public and break down the stigma by having an open dialogue about anal cancer, the human papillomavirus (HPV) and the many other diseases associated with the virus. Eighty per cent of people get the HPV virus at some point and it causes 5 per cent of all cancers, in women as well as men—so it is extremely relevant and important to get our message out there. We find that people do care when we describe how we are solving this issue, but they need to get over the initial shock first.

"In August 2014, one of our supporters who had HPV-related anal cancer, courageously spoke out about her journey in The Daily Mirror and on This Morning. It was a watershed moment for our community - within the first 30 seconds, anal cancer had been mentioned three times and #analcancer was appearing on the screen."

David Winterflood, finance and campaign manager for the HPV and Anal Cancer Foundation, explained that it is important to challenge people on the issue of taboos. "We’ve had some success in actually challenging the press on that very angle," he said, "by asking the press or journalist why it isn’t acceptable to talk about anal cancer." At the same time, David explained, it is important to match a message to an audience. "Our ‘NOMAN is an Island: Race to End HPV’ campaign is an ideal example of this. NOMAN works to raise awareness of HPV-related cancers and their connection to men. We will take a huge step toward ending 5 per cent of all cancers, today, simply by vaccinating both boys and girls against HPV. This vaccine is currently only given to girls in the UK. Preventing 5 per cent of cancer is a tangible message which has struck a chord with the public.

"NOMAN has been a phenomenal vehicle for us to communicate our message. We undertake epic endurance events which push the envelope in an adventure sense. The events show how we and our community are willing to work hard to overcome immense obstacles - whether that is a gruelling ride up a mountain pass, rowing non-stop for 72 hours or 50 days, or fighting to remove those barriers that stand in the way of saying ‘anal cancer’ without feeling it is taboo or achieving universal vaccination against HPV.

"We’ve managed to tap into people’s desires to push themselves to their limits. We provide an avenue for supporters to undertake epic challenges whilst fundraising for our cause. The first NOMAN event took place in 2013 and through that initial event we raised more than $1million. This year there were three NOMAN events - a 200 nautical mile ocean rowing race and two cycling events as part of Cosaveli’s Trois Etapes series.

"The NOMAN campaign and our events have created a channel for us to get in touch with sponsors and participants and the public. It has allowed us to raise significant awareness about HPV and our ability to end preventable cancers. But it’s not just the awareness element: NOMAN helps us raise essential funds to advocate for prevention methods including gender neutral vaccination, to accelerate a cure for the 5 per cent of cancers caused by HPV, and to provide support for survivors, caregivers, scientists and providers affected by anal cancer."

Gabby and David’s top three tips for charities that deal with taboos:

-        Identify the avenues and opportunities which resonate with your supporter base and then maximise them. It would be impossible for us to have the same marketing model as larger charities as our resources are small, but we have identified that our supporters resonate with the ‘end 5 per cent of all cancers’ message.

-        Challenge the media. If you are told your charity won’t be featured because of its content then challenge it. Every time HPV is mentioned it educates the public about the virus and its importance to public health. Many people still do not realise that a cervical cancer vaccination is the same as an HPV vaccination, and that boys as well as girls are affected by HPV-related disease. This is already changing as more and more people learn about HPV and anal cancer from the media.

-        Empower the community. Everyone should be comfortable discussing their experiences and looking for support rather than it adding to their own embarrassment and confusion.

The HPV and Anal Cancer Foundation is dedicated to empowering anal cancer patients and accelerating prevention and research methods that eliminate anal cancer and the virus that causes the majority of cases, HPV.

NOMAN is an Island are greatly indebted to its corporate supporters in 2015:

  • Courchevel Prestige Chalets
  • Macquarie
  • FairFX
  • Jamison Capital
  • Mercuria
  • Magus
  • BGC
  • WyndyMilla

You can donate securely to the HPV and Anal Cancer Foundation via MyDonate, the commission-free fundraising platform from BT.

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