Sunday 22 April 2018

Shot or not: How the state lost so many parents' hearts and minds in the vaccination debate

Fresh cases of measles have been confirmed in ­Ireland, while uptake rates for the HPV vaccine programme we once demanded have slumped to just 50pc. Why have Irish health authorities failed so spectacularly to persuade parents of the benefits of vaccination? Lynne Caffrey reports

Long wait: Dr Maureen O'Leary giving one of the first HPV vaccines in Ireland at Our Lady's Grove, Dublin. Photo: Chris Bellew
Long wait: Dr Maureen O'Leary giving one of the first HPV vaccines in Ireland at Our Lady's Grove, Dublin. Photo: Chris Bellew
Reality: Jade Goody died after a short battle with cervical cancer in 2009

The HPV vaccine has been delivered to 100 million girls in 103 countries worldwide, 220,000 in Ireland, with many nations now reporting a reduction in cervical cancer and pre-cancer rates.

It has been one of the most significant public health developments in history; indeed hundreds took to the streets of Dublin in November 2008 to demand it be included on the HSE programme when then-health minister Mary Harney announced it would be delayed, citing budget concerns. It was finally introduced in 2010.

Yet last year, uptake rates for the first round of HPV vaccinations fell to 50pc, far short of the HSE's target 80pc and the peak uptake of 87pc in 2014/2015.

Seven years in, the programme should be maturing, extending and improving. The Health Information and Quality Authority (HIQA) is considering extending it to include boys, while Australia is preparing to roll out Gardasil 9, which protects against even more cancer-causing antigens, and is already licensed for use in Europe. Instead, the HSE is waging a costly PR offensive, reiterating basic information about the vaccine's safety record and efficacy in a bid to boost uptake rates.

Reality: Jade Goody died after a short battle with cervical cancer in 2009
Reality: Jade Goody died after a short battle with cervical cancer in 2009

The stakes are high. Not only are young girls missing out on protection from a disease that is diagnosed in 300 women a year here and kills 90, but just weeks ago, seven cases of measles were confirmed in Dublin and Meath. There are fears the rupture in public confidence over HPV could leave other vaccines vulnerable.

"There is a concern that some of the anti-vaccine sentiment around HPV may spill over into some of the other vaccines," says Dr Brenda Corcoran, a consultant in Public Health Medicine with the HSE and member of the National Immunisation Advisory Committee. "It's an area of concern for us.

Lessons from Australia

"In Australia, where they've kept up their uptake rate of HPV, they're already seeing up to a 75pc reduction in pre-cancers in young women. We won't see that in Ireland if we don't have high levels of vaccination and that's a huge legacy for us to deal with."

So just how did the HSE lose the battle for hearts and minds?

And why have countries like Australia managed so differently?

A free national HPV vaccine programme was introduced in Australia in 2007, with boys included from 2013. Uptake rates have been consistently high and the country has taken a hardline stance on the 'anti-vaxx' movement.

Laws in some states give childcare centres the power to turn away unvaccinated children either permanently or at times of outbreak. In August, authorities banned British anti-vaccination campaigner Polly Tommey, who produced the SaneVax film Vaxxed: From Cover-Up To Catastrophe after she told audiences around Australia that "doctors were murderers". Ms Tommey visited Ireland in March this year on a tour to promote the film.

Megan Smith, programme manager of the Cervix/HPV Group at Cancer Council NSW, noted that the HPV vaccine had already received media attention shortly before the programme began because the Australian of the Year in 2006, Professor Ian Frazer, played a substantial role in developing it.

"Professional bodies and independent trusted community organisations like Cancer Council have also publicly supported the HPV vaccine - so it is a consistent message from a range of organisations, not just the government speaking.

"In the first three to five years after the programme started here, we observed a 78pc decrease in the rate of infections in 18- to 24-year-old women with HPV [for the HPV types covered by the vaccine]. Precancerous abnormalities also decreased - by 2014 they were 36pc lower in 20- to 24-year-olds, which means they will be at a much lower lifetime risk of ever developing cervical cancer.

"There was also a marked decline in anogenital warts in women in their early 20s, and a decline in the rates of genital warts in young heterosexual men, even before they were included in the vaccination programme."

The battle for hearts and minds

Crisis communications specialist Alison Nulty, from Fuzion PR in Dublin, says the Government undermined public faith in the HPV vaccine from the outset when it delayed its introduction.

"Crisis PR is essentially about trying to manage the communication when disaster strikes and keeping the clear channels of communication open, so that whatever the agreed message, it is being shared and everyone in the organisation is singing off the same hymn sheet." It's that, she says, that has been lacking here.

"First, we had a health minister who announced the launch of the vaccine that was already years behind other countries, then she reversed that decision and then later announced she was going ahead.

"The HSE is now trying to make up for eight or nine years of a deficit. It should have been pushing how effective the vaccine is in 2008/9 in the immediate aftermath of Jade Goody's tragic diagnosis and death. Instead, the vaccine was shelved."

Reality television star Jade died after a short battle with cervical cancer in 2009. In the immediate aftermath, the 'Jade Goody effect' saw a rise in the number of women having smears, which detect changes in the cervix.

"It's difficult for the HSE because it's not just them involved, it's GPs, politicians, Government… they all have to have the same message."

Despite the much-publicised launch of the HSE's new campaign on HPV in August, controlling the 'message' has been challenging.

When it emerged in September that then-Opposition TD Finian McGrath had written to then-health minister Leo Varadkar asking him to "remove" the vaccine in March 2016, the now Minister of State at the Department of Health initially stood over his views.

"I think somewhere in the region of 30pc of reported events are categorised as very serious... I think that's in the UK," he told the Sunday Times. "I'm 99pc sure. It's something I saw earlier on in the office, I'm nearly positive."

Minister McGrath later reversed his position, saying he had "cocked up". He's now stated he's an "unequivocal" supporter of the vaccine.

Before him Senator Paschal Mooney called the vaccine programme a "national disgrace", while Senator Fidelma Healy Eames has also spoken out against it. In April, GP Dr Ruairi Hanley sparked fury when he advocated cutting the benefits of parents who refuse the vaccine in his Irish Medical Times column.

Taking the hard line

It's perhaps no surprise that frustration has spilled over. In August, Health Minister Simon Harris announced the Government was fighting back, saying: "To those who wish to scaremonger, my message is very simple: If you wish to give medical advice in this country become a medical professional and, if you don't, please butt out." He also slammed the "misinformation and downright lies" spread on social media.

But Alison doubts his hardline stance would have won anyone over. "Shouting at parents and calling them names while they have a sick child at home is never going to win hearts and minds," she argues.

"Parents are very upset and concerned. They may feel like no one is listening and they feel they're being dismissed by the medical profession. Sometimes, when you listen to people, you take the wind out of their sails, when people don't feel like they're being listened to they will shout louder and louder until they are heard.

"The aim is to be known as a brand that understands its target audience, listens to their concerns, accepts praise but listens too then when the audience is less than happy. People want to feel that you care about them and you understand them and their story."

"I do think that political support and support from senior management is really important for us…" Dr Corcoran says. "In any country where they have a high level [of uptake], there is the political support and senior management support."

However, she disagrees that the delayed introduction set the programme back, saying it began during a "huge groundswell of positivity". Dr Corcoran squarely attributes the falling uptake rates to a sustained campaign on social media.

In this arena - where storytelling, opinion and hyperbole drive mass audiences - the State body has found itself floundering.

"The programme was going very well," Dr Corcoran says of the HPV vaccine's inception. The supplier for the vaccine used in Ireland is Merck and the brand is Gardasil.

"Around that time [2014/15] there were a number of parents who got together in groups who were concerned, having seen information from other countries, particularly Japan and Denmark, where there were girls who claimed that they had developed long-term medical conditions as a result of the vaccine.

"A number of groups were very active on social media, with schools, with parents, in all different ways, to give them what they said was information that we were not giving them."

The most prominent of those groups is Regret, a parent-led vaccine-injury support group formed in 2015.

Regret's Facebook page promotes a video series called Sacrificial Virgins, made by the UK Association of HPV Vaccine Injured Daughters (AHVID) and anti-vaxx group SaneVax Inc.

Sacrificial Virgins: Not For The Greater Good is the first of a three-part documentary and has 30,845 views on YouTube. Part two, Pain and Suffering has 9,365 views, while part three, A Penny For Your Pain has accrued more than 3,000 views in just a few weeks. All feature footage of girls who say their health has been affected by the vaccine.

This style of communication was branded "emotional terrorism" by HSE boss Tony O'Brien but it does carry an impact.

Sacrificial Virgins' dramatic, heart-wrenching style is in contrast to another video, also on YouTube, from the HSE. I'm Relieved That She is Protected features an Irish mother who cancelled her daughter's vaccines after hearing scare stories. She then developed cervical cancer and had her daughter vaccinated. It has earned 3,198 views in three months.

Storytelling videos have enormous influence online, a link borne out on the HSE Facebook page where a 2016 post directing readers to information about the vaccine gets these replies: "Not a hope in hell of my girl getting this after the video I seen and shared about those girls that lives are destroyed."

Losing the online argument

Another writes: "Thanks to the raised awareness on social media ... we stopped our daughter from receiving the second injection."

While another commenter says: "I'm so glad I read this thread today as my daughter is due to get vaccine tomorrow but after reading comments and some research not anymore. If there's a chance of anything happening to her I say no…"

Dr Corcoran says she empathises with the families involved but says it's wrong to attribute their symptoms to the vaccine. "There is no doubt that the girls who have been impacted, who have these long-lasting conditions, are ill. It may take some years for them to get better and that's devastating for the families.

"Unfortunately, in some circumstances, there are no answers to say, 'this is the cause of your daughter's illness'. There are, and there have always been, these chronic fatigue-like syndromes that have been known for over 200 years that do happen in teenagers, and more commonly in girls. They have happened before the vaccine was introduced, it happened to girls who've been vaccinated and it happened to girls who've not been vaccinated.

"No medical practitioner or health service wants to do anything that would harm anybody. If there was any scintilla of evidence that there was an issue with any vaccine, that is taken extraordinarily seriously and investigated at the highest level. All the evidence that has been looked at in relation to long-term side effects has shown that there is no long-term condition that is linked to the vaccine.

"It's exactly the same as the issue we had with MMR and autism, which tends to be diagnosed around the age we give the MMR vaccine," Dr Corcoran adds.

In 1998, British scientist Andrew Wakefield falsely linked the MMR jab with autism in a now widely discredited report, causing vaccination rates to plummet.

"All the scientific evidence, looking at millions of people, found no link between MMR and autism but parents are looking for a reason. The uptake rate dropped from almost 90pc to 69pc and even now, 17 years later, it's only at 93pc, below the target of 95pc.

"That's the difficulty we have…"

Alison advises clients in times of crisis to look for the opportunity and the HSE is doing just that, to guard against this happening again.

"This isn't going to go away," Dr Corcoran concedes. "Vaccine scares take a long time for public confidence to recover so we will have to continue with what's been started in terms of persuading parents and all health professionals of the value of vaccines…

"What we have to do is build up what's known as 'vaccine-resilient populations' in good times, so people are aware of the benefits, and that passes through from school right through to when they themselves have children."

Ultimately, though, Dr Corcoran knows it will be parents and guardians over the coming months who turn around the fortunes of the HPV vaccine; clearly many need to be convinced.

"When you're weighing up whether to vaccinate your daughter, or any other child with any of the other vaccines, weigh up the information," she urges. "The overwhelming evidence is that any vaccine is a much better option."

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