In 2018 we introduced our Pieces of the Continent series which features discussions with people who have been directly affected by a HPV-related cancer, and professionals, campaigners, scientists, clinicians and researchers who are fighting to have the cancers caused by this virus eliminated forever.
In this roundup we share our favourite bits from the series so far. A huge thanks to Steve, Gary, Grainne, Clare and Greg for sharing their stories with us:
ABOUT HPV
“ I think there needs to be more widely available information and education about what are the HPV-related cancers and information about what we know to be their causes.”
ABOUT HAVING A HPV-RELATED DISEASE
“ I was 63, unexceptional in every way and could feel myself blush and squirm with embarrassment. And then the shock set in.” Gary Tanner
“I was warned of all the possible side effects and I had to endure every one of them up until the point where I had to be hospitalised and given blood transfusions in order to stay alive long enough to finish the course. It was gruelling and terrifying and humiliating and painful and emotionally disastrous for my wife and family to watch.” Gary Tanner
“The wait to find out my scan results and plan was the worse part as you think the worse.” Clare Baumhauer
“Every day was torture; there was no respite for 6 months and then a slow recovery for the next 6. There was never a time when I wasn’t in major pain and discomfort, night and day. The impact is far reaching and I believe that I suffered with post-traumatic stress. My physical recovery took almost a year but the emotional impact was far reaching.” Steve Bergman
“On diagnosis, I went into complete shock. I stopped hearing the detail.” Steve Bergman
ABOUT RESEARCHING HPV
“We investigated whether electronic health record prompts delivered to pediatric clinicians would improve delivery of HPV vaccination […] an elaborated prompt that included suggested recommendation language resulted in substantially higher HPV vaccine initiation rates compared to the no-prompt condition.” Gregory Zimet
“At the state level, it is clear that strong state-based public health policies around HPV vaccination can improve vaccination rates.” Gregory Zimet
“At the practice level it is also very clear that a strong, clear provider recommendation is important to facilitate high HPV vaccination rates.” Gregory Zimet
ABOUT THE BREAKTHROUGHS IN THE FIELD OF HPV
“The health agencies and NGOs need to radically rethink approaches to social media in the struggle to be heard above the noise created by the fake news era.” Gráinne O’Rourke
“There are some really positive trends that are important to remember amidst all of the challenges. For instance, vaccination of males has increased at a rapid rate and is now quite close to the rates of female vaccination.” Gregory Zimet
ABOUT HOW TO COPE WITH CANCER
“for several months preceding diagnosis, I had been barely able to swallow a glass of water let alone ingest solid food.” Gary Tanner
“My neck was a patchwork quilt held together by giant staples. I had to write notes to people for 7 months while everything healed up well enough for the surgeons to consider it safe to fit me with a prosthetic speech valve. So now I look like Frankenstein’s monster and sound like R2D2 but the grandkids find it highly amusing.” Gary Tanner
“If all nurses were trained in knowing the signs of lichen sclerosus, VIN and vulva cancer and these were talked about during your smear tests along with the HPV virus – how you get it, how common it is and how the vaccine can prevent it – then it would make a big difference.” Clare Baumhauer
ABOUT HOW IMPORTANT GENDER-NEUTRAL HPV VACCINATION IS
“If any parent who has read my, or Steve’s story can then deny their son or daughter the two injections which are required they really need to have a rethink. Please, please don’t make a decision which could mean that, at some point in their future, your child will suffer as I have” Gary Tanner
“All relevant stakeholders need to create information that is clear and straightforward emphasising the safety and efficacy of the vaccine” Gráinne O’Rourke
“The HPV vaccine is extraordinarily safe and effective and prevents multiple cancers.” Gregory Zimet
“My daughter was amongst the first to receive the HPV jab in 2008. The vaccine should have been made available to boys then.” Steve Bergman
“Vaccinating boys means that most boys will avoid what I went through, physically and emotionally. To me it is a no brainer” Steve Bergman