Making a song and dance about HPV
Innovating to mobilize youth in Asia Pacific and beyond
David Winterflood is the CEO and driving force behind NOMAN is an Island: Race to End HPV, a program of the Anal Cancer Foundation that uses endurance sport events to raise awareness and funds to eliminate HPV cancers. Based in the UK, David organizes ocean rowing, cycling and running events in which participants raise funds to support NOMAN programs to secure gender-neutral HPV vaccination programs around the world. NOMAN’s 10th anniversary is around the corner, making it timely to talk to David and learn more about the campaign.
Q: What inspired the NOMAN is an Island Campaign to come into existence ten years ago?
NOMAN was created to increase awareness about HPV and its connection to men. But the story begins with a woman.
Tragic events sometimes become the bedrock from which positive initiatives grow. Paulette Isabel Crowther was an American woman diagnosed with stage IV HPV-related anal cancer at age 51. Her three children Justine, Camille, and Tristan Almada banded together to care for their mother as she navigated through the illness.
When Paulette passed away in 2010, the Almada children were devastated, but also inspired by the courage of their mother. They felt that they had been handed a purposeful mission: to prevent HPV cancers from ending other people’s lives too early. They started researching HPV and were shocked by what they learned; that HPV is so common and yet little known; that it causes 5% of all cancers in the world and those cancers are on the rise. The good news was that a few years earlier in 2006, a safe and effective vaccine to prevent HPV had been approved and made available. That was certainly going to be crucial to realizing the mission that they had decided to take on.
One thing they learned, however, troubled them. Although HPV affects both males and females, the former were being left out of the solution. HPV vaccination programs being introduced around the world at that time focused almost exclusively on girls (since cervical cancer is the most prevalent HPV cancer). That just didn’t seem logical if our collective goal is to end the cancers caused by HPV. . If the virus is gender neutral, prevention should be as well. Securing gender neutral HPV vaccination programs would be central to their advocacy efforts in order to defeat all HPV cancers.
Q: NOMAN’s unique approach to raising awareness about HPV is racing. Tell us about it.
Our races serve as a powerful tool in our mission to eliminate HPV cancers.
NOMAN participants raise funds to support our programs, in addition to acting as ambassadors to spread the message to their communities of the importance of protecting their sons and daughters against HPV. The majority of participants are parents themselves; they understand the inequity of the current system. A mother or father should be able to prevent cancers in both their daughters and their sons. Males are keen to be part of the solution.
Q: When and where did the racing begin?
Our initial event in 2013 was a rowing race from Barcelona – Ibiza which captured the imagination of participants and the public, raising over $1 million, and generating media coverage on a global scale. From 2 crews in 2013 we grew this to 12 in 2019 prior to the pandemic.
In addition, we established a relationship as the official charity partner of the Haute Route, part of the IRONMAN group. Haute Route provides the world’s most prestigious multi-day cycling events for amateurs tackling the most famous climbs in cycling from the Tour de France or Giro D’Italia. This has given us a great platform to talk with riders previously unaffiliated with the cause. With the support of our kit partner, we provide matching ‘END HPV’ socks. It is a visibly arresting sight when several hundred riders are wearing bright yellow socks to unite in their support for our cause. The analogy is compelling and ties with our own message at NOMAN is an Island – we can overcome the most immense obstacles, but only when we work together to do so.
Q: How many endurance sport events does NOMAN undertake each year?
Our core events entail two or three cycling events per year, and our Row to End HPV ocean rowing event every other year. NOMAN has also been involved in Ride London and the London Marathon in the UK. Individuals also approach us with their own crowdfunding sporting challenges to support our programs. We brief participants about HPV, provide fundraising toolkits and branded apparel - essentially, we give our NOMEN all the tools they need to talk about this disease and how we can prevent it with their networks.
Q: Where do you find people who have the time to take part in these physically demanding events?
People from all walks of life get inspired to be a part of what we are doing - students, business professionals, Olympic gold medalists, cancer survivors and ordinary folks with a fitness goal to which they attach a good cause. We have even had participants who were fighting HPV cancer at the time they were racing. The majority of participants come through word of mouth - people do NOMEN events, and they tell their friends and they in turn want to get involved.
Q: How do you sustain interest in the campaign?
People are excited by what we do for a multitude of reasons.
We all know someone who has been affected by cancer, and the immense pain and suffering that causes not just for the individual, but for those that they love as well. The Almada’s story is hugely inspirational; three siblings who suffered the ultimate loss and acted as they believe that no one should have to experience what they did. We are giving hope of a future free from HPV cancers; we have a solution which is safe and effective which we should be giving to both girls and boys. That message of optimism and possibility is contagious.
Gender neutral HPV vaccination is the greatest means we have at our disposal to prevent HPV cancers. In the UK, immunization against HPV has cut rates of cervical cancer by nearly 90%! That’s massive, now think what’s possible in terms of all HPV cancers. Since we only screen for one of the six cancers caused by the virus, these vaccines are the only way we can prevent the other five. Let’s repeat that - we have cancer preventing vaccines. Once people learn this, they tell friends, family, and fellow parents.
The other core ingredient that our supporters love is our ambition to become obsolete. People like the idea that we want this problem to be solved. If we achieve our goal – that all children are protected against these preventable cancers – we will close NOMAN down tomorrow. Often, we have people approaching us asking how they can help. They are inspired by our events and the commitment shown by our participants. There’s lots of wonderful causes to support; by creating something different we are cutting through in a highly competitive fundraising and communications landscape.
Q: Many countries don’t even have access to the HPV vaccine, and programs almost always start with girls because cervical cancer is the biggest problem. What would you say to the policy maker trying to decide where to start?
One of the things I tell policy makers is that HPV affects all of us. It is inequitable and unfair that we ask girls to shoulder the burden of ending HPV cancers alone. We are talking about the Human Papillomavirus and not the Female Papillomavirus. By empowering and including males in our solutions to tackle the HPV disease burden we not only accelerate efforts to eliminate cervical cancer, we also have the opportunity to eliminate all HPV cancers. A gender-neutral virus demands a gender-neutral solution.
Q: What do you see as the most significant obstacle to overcome in order to reach this goal?
I know from my decade of experience in this landscape that males are too often excluded from the conversation around HPV. The bad news is that rates of HPV cancers, oral, penile and anal – are rising sharply in males. Only around a 1/3 of people are even aware of the link between HPV and cancer in males. Here’s the good news -- we have a safe and effective vaccine to prevent HPV cancer in males as well as females. It is at present the only tool to prevent these cancers in men. For us to accelerate the elimination of cervical cancer, and all HPV cancers, we must ensure that males are empowered to be part of the solution. We limit our progress towards these goals when we only target 50% of the population.
Q: As of Sept 2022, 43 countries around the world include HPV vaccination of girls AND boys in their standard immunization programs. That’s a good start, but we still have a long way to go, don’t we?
I am confident that progress towards a world that embraces the opportunity to eliminate all HPV cancers will be quicker in the coming decade than it was in the last 10 years. Rewind to 2010 and no-one was routinely protecting boys against HPV - now over 40 countries are doing so. I believe that the UK’s decision to adopt gender neutral HPV vaccination in 2018 has also moved the dial on this – their cost effectiveness modeling is held in high regard globally and we saw a spate of recommendations in other countries afterwards. We remain optimistic that we will reach our goal. We will eliminate HPV cancers.
Q: Can you tell us more about how influencing public policy works in practice?
NOMAN co-founded the successful advocacy efforts to include boys in HPV vaccination programs in the USA and UK.
Influencing public policy doesn’t happen overnight. In the UK, boys were initially excluded from even accessing the vaccine and it took five years of concerted effort through the coalition we co-founded, HPV Action, to secure gender-neutral HPV vaccination. Patience and perseverance are necessary. In terms of some of the key aspects of the campaign:
It is easy to get swept up in details and arguments, but at the end of the day at NOMAN we center on these truths: Nearly everyone will get an HPV infection at some point in their lives. HPV cancers cause suffering in both males and females. We have a solution – there is a safe, effective vaccine to prevent HPV cancers. We can prevent 5% of all cancers by vaccinating both girls and boys against HPV.
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