How Danes fell out of love with the HPV vaccine

A massive public information campaign has been launched in Denmark to rebuild confidence in the HPV vaccine after widespread – but unfounded – concerns about its safety

Dizziness, nausea, chronic headaches, breathing problems and low blood pressure – these are some of the mysterious symptoms that have been reported by dozens of Danish girls over the past eight years. Their plight became a regular fixture in the Danish media, from tabloids to broadsheets, where they expressed grief and frustration at their ill health.

The medical establishment has yet to find a diagnosis that links the variety of symptoms the girls have experienced. But many of the girls and their families are in no doubt.

“We can see that the times when Simone has felt worse absolutely correlate with when she was given the [HPV] vaccine,” Mette Kenfelt, mother to one of the affected girls, told Politiken newspaper in 2013.

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The medical establishment disagrees, and no evidence has been found to cast doubt on the vaccine’s safety. Still, the vaccine has fallen out of favour. While 79 percent of Danish girls born between 1998 and 2000 have received two doses of the vaccine, the same goes for only 30 percent of girls born in 2003.

The health authority Sundhedsstyrelsen has now launched a massive campaign to dispel misinformation and encourage girls to get the vaccine. At stake are not simply the lives of women who risk developing cervical cancer, but public faith in a vaccination programme that is in peril of  being fundamentally undermined.

No evidence of harm
The HPV vaccine protects against some forms of the human papillomavirus (HPV), which is carried by around 80 percent of the population. While some forms of HPV cause common warts on the hands, feet and genitals, others target the woman’s cervix, resulting in cell changes and sometimes cancer.

Every year, 375 women in Denmark develop cervical cancer, and 100 die from the disease. Women of all ages can develop the cancer, but it is most often diagnosed in women around age 35. About 9,000 women in Denmark currently suffer from the disease, and while there are good chances of beating it, survivors often contend with infertility, chronic pain and incontinence.

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Anti-cancer organisation Kræftens Bekæmpelse says that since the vaccine was made available to 12-year-olds in 2009, about 1,400 incidences of cervical cancer have been prevented in Denmark, and 300 lives have been saved.

As with all vaccines, a small percentage of recipients will experience side effects. Around 2,400  women have reported suspected side effects from the HPV vaccine through the end of 2016 – approximately 0.4 percent of the 600,000 women who have received the vaccine.

While the medical authority Lægemiddelsstyrelsen must register every suspected side effect, that doesn’t mean that there is a connection. Of the 312  girls to apply for compensation for injuries purportedly caused by the vaccine, only three have won their cases.

A series of unfortunate events
The HPV vaccine’s public fall from grace is attributed to fears that the vaccine is responsible for two relatively rare illnesses. The first is POTS, a form of arrhythmia, and CRPS, a chronic pain illness. A 2015 report by the European Medicines Agency found that POTS and CRPS were as prevalent among women who were vaccinated as those who were not. The World Health Organisation has similarly cleared the vaccine of suspicion.

Danes remain wary, however. The scepticism is so entrenched that 34 percent of parents surveyed by Sundhedsstyrelsen last year said they were in doubt over whether to give their daughters the vaccine.

There is no simple answer as to why Denmark is the only country in Europe with a mainstream mistrust of the vaccine. According to Lars Igum Rasmussen, health editor at Politiken newspaper, the phenomenon started with a group of sick girls who could not find a diagnosis for their symptoms.

READ MORE: The media’s misguided tolerance of anti-science fearmongers

“When doctors examined these young women, they could find no illness – no cancer, no asthma, no allergies. So there were patients with symptoms, but without a diagnosis, who were passed around in the system. Everyone agreed they were sick, but they weren’t taken seriously, so they started to believe it was the vaccine,” Rasmussen says.

In 2013, when Politiken published the first in a series of articles that suggested a link between the vaccine and severe side effects, doctors in the Synkopecentret at Frederiksberg Hospital were beginning to see a new group of patients. The centre treats patients who suffer from fainting disorders, which primarily affect the elderly, so the arrival of young patients was surprising.

With stories in the media starting to emerge about the possible connection to the HPV virus, doctors at the Synkopecentret decided to investigate whether there was a physical basis for the young women’s symptoms. In 2015, they published a study that suggested that there could be a connection between the HPV vaccine and the subsequent development of POTS.

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The same year, doctors from Synkopecentret appeared in a TV2 documentary called “The Vaccinated Girls”. Alongside moving testimonies from a number of young women who suspected the vaccination was responsible for their illness, the doctors refused to rule out a connection.

The documentary reinforced fears about the vaccine, which by this time had begun its precipitous decline. Although it was nominated for five journalism prizes at the prestigious Cavling Awards, the documentary has since been widely condemned by journalists and health professionals for building its case on anecdotes and inferences rather than facts and data.

“There are ugly scandals in the pharmaceutical industry – big scandals that have killed people,” says Rasmussen. “All journalists want to find the next scandal, but in the health area it’s very difficult to actually prove causality. Just because the girls became sick at around the same time as they got the vaccine, does it mean it was the vaccine? No studies show increased prevalence of these symptoms in a vaccinated versus non-vaccinated population. So there was no causality.”

Leif Vestergaard, director of Kræftens Bekæmpelse, blamed the documentary for the falling uptake of the vaccine.

“The documentary materially contributed to the decline in the number of people taking the vaccine. The insecurity among young people and their parents is growing. The number of cervical cancer cases is growing,” he told Politiken newspaper.

Not the vaccine
New studies have further undermined the suspicions of the vaccine sceptics. This summer, the Norwegian Institute of Public Health released a study that found no connection between the HPV vaccine and chronic fatigue syndrome (CFS), whose symptoms overlap with POTS.

The study showed that girls who were frequent users of the health service were more likely to be diagnosed with CFS than girls with a more normal interaction with the health service. A similar pattern emerged in a 2016 study by the Danish disease authority, SSI, which found that girls who reported suspected side effects from the vaccine were twice as likely to be in contact with the health service before they fell ill.

“We can see with clear statistical significance that they have had a greater use of health services and an increased number of symptoms reported at hospitals even before they received their first HPV vaccine,” Kåre Mølbak, department head at SSI, told Politiken newspaper.

Rebuilding trust in vaccines
To restore trust in the vaccine and improve vaccination rates, a campaign was launched in May by Sundhedsstyrelsen, Lægemiddelsstyrelsen and Kræftens Bekæmpelse. ‘Stop HPV – Stop Cervical Cancer’ will run until the end of 2018, providing information that the organisations hope will increase uptake of the vaccine to 90 percent of the population.

“It is vital that we rebuild trust in the vaccine programme, because we know that the HPV vaccine can prevent cervical cancer,” Sundhedsstyrelsen’s director, Søren Brostrøm, said. “We know that the vaccine is both effective and safe, and that it is at least as safe as other vaccines.”

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As Sundhedsstyrelsen rolls out the campaign on social media with the hope of getting in direct contact with undecided parents, scepticism toward the vaccine remains deep. There are still a number of websites and Facebook pages dedicated to poking holes in official assertions of the vaccine’s safety.

Rasmussen explains that the publicity campaign is designed not only to increase the uptake of the HPV vaccine, but also to ensure that fears about this vaccine don’t morph into widespread scepticism of the vaccination programme as a whole.

“There’s a lot at stake. If mistrust grows toward one vaccine, it might grow for all vaccines. This is the worst possible outcome for the health authorities. The child vaccination programme is the most important tool they have for controlling disease in the population. And while a small number of parents might not vaccinate, their job is to keep that number as small as possible. The problem is that we are forgetting about these diseases, and we only read about them now. So there is a real threat of parents starting to question what is in vaccines and whether they are safe, when they actually are,” Rasmussen says.

He adds that it’s important to remember that at the heart of the debate are a group of young women who are undoubtedly ill – even if their illness was not caused by the vaccine – and if the health service hadn’t been so slow to give them the support they needed, the vaccine crisis might have been averted.

In May, Sundhedsstyrelsen acknowledged the role it played.

“These women were not properly helped in the health service,” Brostrøm told TV2 News. “The health service is not perfect, just like science is not perfect, and the authorities are not perfect. They have been thrown around in the system without getting a proper answer.” M

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By Peter Stanners

Co-founder and Editor-in-chief. Occasional photographer.

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