OUR ROLE & IMPACT
Introducing the HPV vaccination for boys can stop many preventable cancers.
In most countries, only girls receive the HPV vaccine. As of November 2019, 39 countries now vaccinate, or plan to immunise, boys as well as girls against this devastating virus vs just the USA and its unincorporated territories such as Guam and Puerto Rico when we began back in 2013 (our parent The HPV and Anal Cancer Foundation formed and led a coalition of organisations which testified to the CDC, leading to a recommendation for boys and girls to be vacinated against HPV in the USA).
NOMAN raises awareness and funds to fight the HPV-related cancer epidemic in men and women, while challenging participants to extreme endurance races across the world. Our inaugural NOMAN campaign was entirely funded by the generosity of one of our patrons, meaning that 100% of the revenue from our 2013 donations went directly towards eliminating the burden of HPV-related cancers.
NOMAN works with doctors, industry leaders, governments, non-profit think tanks, patients and supporters like you to explore creative approaches that lead to the most efficient possible path of eliminating HPV and the devastation it causes.
Following our success in the US and UK, our focus is working with motivated partners and stakeholders to secure gender neutral HPV vaccination across Europe. We are calling for urgent evidence-based action to eliminate cancers and diseases caused by HPV by the EU and all governments throughout the WHO European region. In the 31 EU countries, HPV is responsible for 53,000 new cases of cancer. Across the wider WHO European region that figure increases to nearly 90,000 new cases of cancer.
Together, we can end the suffering caused by this virus.
Some of our accomplishments over the years are listed below:
SECURING ‘JABS FOR THE BOYS’ IN THE UK WITH HPV ACTION
HPV Action was co-founded of the Throat Cancer Foundation and NOMAN is an Island’s parent charity, The HPV and Anal Cancer Foundation, in 2013. After 5 years campaigning the UK announced in July 2018 that boys would now be covered by the national HPV vaccination programme. HPV Action’s main target over the five years was the government’s vaccination advisory committee (known as JCVI) which, in 2013, had begun an assessment of whether boys should be vaccinated. At that time, the JCVI was expected to make a decision in 2015. This was then postponed to 2017 before finally being made this year.
HPV Action achieved its goal through the following process:
Recruiting other patient and professional organisations with an interest in cancer, sexual health, men’s health, gay men’s health and public health as well as oral health. In total, 51 organisations joined our coalition.
Developing a media profile raising awareness of the importance of gender neutral vaccination and featuring the case studies of HPV-related cancer patients who advocated for change (with the help of NOMAN’s pr team, Street and Co). Additionally, new angles on the story including a national survey of dentists and doctors found that 95% of respondents thought boys should be vaccinated. The support of the Mail on Sunday for our campaign from January 2018 onwards was also of huge importance through a series of hard hitting articles.
Several meetings were held with the JCVI secretariat and the Public Health England officials working with JCVI. Detailed responses were made to JCVI consultations. Throughout, HPV Action highlighted concerns with JCVI’s cost-effectiveness modelling and also raised wider issues that needed to be taken into account, not least sex discrimination (in this case, against boys). Huge importance was attached to gathering and disseminating the best-available evidence.
Making the case to opinion-leaders in the field, for example through journal articles and conference presentations, building support among politicians from all parties, lobbying ministers directly and engaging with the officials supporting JCVI.
Attaining the support of many MPs and securing Early Day Motions, Parliamentary Questions, Commons and Lords Debates. Of particular importance were the endorsements by the chairs of several influential All Party Groups, including John Baron from the Cancer APG and Sir Paul Beresford from the Dentistry APG.
RECEIVED INAUGURAL JOE BIDEN CANCER AWARD
On September 20th, 2018, Justine, Tristan and Camille Almada, who started the NOMAN campaign after their mother Paulette passed away from cancer caused by HPV, received the inaugural Biden Cancer Initiative FIERCE award for Leadership through Exemplary and Awesome Purpose. Selected from a pool of over 700 individuals and organizations, the siblings were recognized for “fundamentally improving the cancer experience for patients by creating education, awareness, and research initiatives”.
Greg Simon, President of the Biden Cancer Initiative said: “We learned about so many brave and committed leaders devoted to helping people with cancer from the hundreds of nominations we received. It is no surprise to see so many remarkable efforts making a tremendous difference in the lives of cancer patients. It is our privilege to recognize and spotlight the individuals and organizations who epitomize what it means to be FIERCE in the face of cancer, and allow us to make hope real.”
SPONSORED THE FIRST EVER UK SYMPOSIUM INTO KEY ISSUES IN HPV PREVENTION AND EARLY DIAGNOSIS
The Foundation were one of the lead sponsors for this symposium at the Royal Society for Public Health aimed at clinicians, epidemiologists, scientists, public health specialists, patient organisations and others with a special interest in HPV and who are opinion leaders in this field. The event identified recommendations for action in research, policy and practice and to inform discussion among a wide range of very relevant and influential stakeholders.
The UK has a comprehensive HPV vaccination programme for 12/13 year old girls and a cervical cancer screening programme. The purpose of the Symposium was to identify, better understand and make recommendations about areas where action could be taken to improve the prevention of HPV infection and the early diagnosis of HPV-related disease.
Key topics addressed included:
– An overview of HPV epidemiology, prevention and policy
– Tackling gaps and inequalities in girls’ uptake of the current HPV vaccination programme
– Dilemmas in vaccinating men who have sex with men
– The potential for screening for high grade dysplasia, especially in high risk population groups
– Challenges in increasing public awareness of HPV-related disease to improve vaccination uptake
The symposium was supported by amongst others, John Baron MP (Chair of APPG on Cancer), Margaret Stanley (Emeritus Professor of Epithelial Biology and Fellow of Christ’s College, University of Cambridge), Chris Bentley (Independent Population Health Consultant), Peter Greenhouse (Consultant in Sexual Health, Bristol and Weston). You can read the report here.
We intend to run a similar symposium amongst European stakeholders in 2019/20.
ACHIEVED GOVERNMENT-RECOMMENDED VACCINATION FOR ALL US CHILDREN
We have achieved government-recommended vaccination for all children in the US by working with stakeholders in the following advocacy initiatives. We:
Testified before the FDA in support of expanding the Gardasil vaccine’s approval for anal cancer prevention for males and females. The FDA approved Gardasil for the prevention of anal cancer in December 2010.
Formed and led a coalition of 12 organizations to submit multiple joint testimonies to the CDC’s Advisory Committee on Immunization Practices to provide males with the same access to the vaccine as females. In October 2011, the CDC voted in favor of routine HPV vaccination for males. The HPV vaccination is now recommended for all 12-13-year-old males and females.
To increase vaccination uptake on a local level, we have:
- Testified at the New York City Council’s Committees on Health and Women’s Issues to support vaccination in youth on January 8th 2015.
- Worked with the New York City Department of Health and Mental Hygiene to strategize ways to educate the public about HPV, to increase vaccination among adolescents and to make sure that screening for anal cancer and precancer is occurring in high-risk populations.
- Worked with the NY Board of Education to ensure HPV and the vaccine was discussed in the sexual education program in schools.
Presented at an HPV summit in Boston, MA in November 2014. The event was designed to address the HPV burden in the state and develop strategies to increase vaccination through education and awareness.