17 Enero 2017 14:46
In 2008, Spain began vaccinating girls against human papilloma virus. Nine years later, many questions about the effects and dangers of this vaccine remain unanswered
Aurora is certain that she’s a victim. One of thousands of victims of a system that decided to combat a virus whose potential transmitters are always men, with a vaccine aimed primarily at women.
In Autumn 2008, Aurora received a letter from the Consellería de Sanitat de la Generalitat Valenciana (Generalitat of Valencia Sanitation Department), informing her of a new preventative vaccine against cervical cancer. It was, according to the enclosed leaflet, effective and safe, and there were no side effects. On 8 November of the same year, she went straight from the exam hall to the local clinic to get her shot.
‘As soon as I had the injection I started to feel pain. They told me sit in the waiting room for 15 minutes to see how I’d react. The pain grew more intense, my vision became impaired, and I began to feel weak and dizzy. I remember my mum speaking to someone, but I couldn’t make out what they were saying,’ Aurora explains.
Aurora was just a normal girl with a life like many other teenagers. She loved doing sport, especially gymnastics and cycling. She had lots of energy, and generally needed just five hours sleep a night. But that was all before the HPV vaccine changed her life forever.
‘After that day, Aurora couldn’t move her arm for two months. Then the paralysis reached her face. After another two weeks, it had reached her other arm, then her legs. One year later, my daughter couldn’t even get out of bed,’ Aurora’s mother recalls.
As time passed, new symptoms appeared: tachycardia, breathing difficulties, sleep apnea, fibromyalgia, vision and hearing loss, swollen legs, red skin, and a nine-month-long period.
‘I was under no doubt that they were side effects of the vaccine,’ says Aurora’s mother. 8 November marked the beginning of the family’s pilgrimage to a series of doctors and specialists – all of whom seemed to offer a different diagnosis – and eight years of suffering. And all this provoked by what was supposed to be a ‘safe and side effect-free’ injection.
What went wrong?
At present, the two commercially available HPV vaccines, Gardasil and Cervarix, are recommended in the routine immunisation programme of all Spanish Autonomous Communities. Injections are given to children and young women, and doctors continue to regard systematic vaccination against HPV as the most effective and efficient way of controlling the infection and preventing cervical cancer.
However, more countries and organisations are beginning to question the benefits of these vaccines.
The Japanese government has stopped recommending it because of reported side effects. In Chile, the Appeals Court in Talca – the highest court in the region – has issued an order to the government to stop the HPV vaccine from being used. An international movement has emerged in countries including the USA, Mexico and Spain, calling for recognition of the adverse side effects, demanding that girls no longer be used as guinea pigs, and promoting the use of less aggressive methods of prevention, such as Pap smears.
Adding to this tidal wave of criticism is a documentary that’s just been released in Spain that brings to light some of the questions raised by the vaccine: Papiloma: las mujeres tenemos que decider (Papilloma: Women Should Choose)
Why was this vaccine introduced into the routine immunisation programme? Is there any evidence for its effectiveness? Why does there seem to be so much denial about the negative side effects it provokes? Are people being given sufficient information about the risks of the HPV vaccine?
And, most importantly of all, is it really necessary?
Systematic vaccination for HPV. Yes or no?
Some professionals believe that the vaccination is not necessary. Margarita López, Coordinator of the Catalan Network of Women Health Professionals and president of the Women for Health Network, says that the HPV vaccine is another instance of the excessive medicalisation of women and girls.
Margarita López cites evidence such as this Study of Cancer in Spain, created in 2005 by the Spanish Health Ministry. In the document, the ministry highlights the low incidence of cervical cancer in Spain (7.6 women in 100,000), as well as the relatively low mortality rate: 3.1 women in every 100,000. ‘That’s why it doesn’t seem appropriate to implement a population-based mass prevention programme. Instead, the strategy should be a case by case one,’ the report states.
‘According to the 2005 report, cases of cervical cancer in Spain have been so reduced that population-wide intervention is unnecessary. This refers only to systematic pap smears. In other words, take the entire target population and screen them, just like they do with breast cancer,’ López explains. ‘But now, three years later, the state has started using public money to introduce the vaccine as part of the routine immunisation programme,’ she says.
In her view, the HPV vaccine is unnecessary because ‘there is no major disease or epidemic.’
According to official estimates, 75% of sexually active women, and 85% of men are infected with HPV at some point in their lives, although about 90% of these infections are transient and clear up within two years. The virus persists in just 10% of women infected; of these, only 1% will develop cancer associated with HPV.
‘The papilloma virus is very easy to acquire, but most women fight it off on their own. If it does persist, it takes a very long time before it develops into cancer. Usually around 20 years, if it ever even reaches that point,’ Margarita explains. ‘During this period it’s possible to carry out periodic check-ups to ascertain if anything’s wrong, or if any cell has been modified. And, if necessary, laser surgery, colposcopy, or uterus removal can be carried out,’ López adds. ‘There are many possible solutions. In most cases, women who developed this cancer did so because they didn’t have the necessary pap smears.’
However, some professionals do advocate for the inclusion of the vaccine in the routine immunisation programme. Magda Campins, member of the Official College of Physicians of Barcelona and Head of Service of Preventative Medicine and Epidemiology in Vall d'Hebron University Hospital, is one of them.
‘Screening tests or pap smears (also known as the Papanicolau test) are used to detect precancerous lesions and carry out early treatment. What they enable is a secondary prevention when the lesion has already been established, but they don’t prevent its occurrence (primary prevention), which is the great benefit of vaccination,’ says Doctor Campins.
However, it takes years for this benefit to be recognised. ‘What must be kept in mind is that the incubation time of cancer is long – between 20 and 30 years – and therefore the benefits of HPV vaccination are not immediate. They are only observed after a prolonged period,’ Campins explains.
An eight-year struggle for the recognition of the side effects
Another of the arguments put forward by those opposed to the papilloma vaccine: ‘We’re not anti-vaccine,’ they stress. The problem lies in the risks presented by the side effects.
In 2014, José María Laillo, president of the Spanish Society of Gynaecology and Obstetrics, told EFE that the side effects of the vaccine are ‘4%, equivalent to other vaccines of this type’. However, other professionals, above all the Association of People Affected by the Human Papilloma Vaccine (AAVP), disagree.
‘Epidemiological studies carried out at the University of Alicante say that this vaccine provokes many more reactions than other vaccines,’ says Alicia Capilla, president of AAVP and mother of a girl affected. ‘A similar study was carried out in the USA with the same results,’ she adds.
Alicia is referring to the official monitoring programme, VARES, which is responsible for recording the harm caused by the vaccines. In January 2015 there were 38,217 adverse reactions to the HPV vaccine, including 220 deaths, 1,284 disabilities and 3,945 hospitalisations. ‘In Spain, official data from the latest review, in July, establishes 1,020 cases and 3,200 reports of adverse reactions since the vaccine was introduced. This is because a person can suffer several adverse effects. On average just three are reported,’ says Capilla.
In addition, it’s important to consider the lack of transparency of institutions. ‘Professionals and parents are not informed of the potential side effects associated with the vaccine,’ says Margarita López.
‘The cases that have reached the Association have all been obvious. But others are harder to diagnose. If a girl of 16 goes to the doctor because she doesn’t get her period, and her ovaries are like those of a 50-year-old, no one is going to associate it with the papilloma vaccine,’ she says. ‘For the adverse effects to be connected to the vaccine, there need to be reports of those adverse effects. And for that, there must be sufficient training to be able to say “this effect is due to the vaccine”. Because, in the end, when doctors can’t explain something, they end up sending people to the psychiatrist.’
‘In 95% of the cases that reach us, the girls have been told that psychological problems are to blame, when the side effects that the girls complain of actually appear in the data sheet of the vaccine,’ explains AAVP president, Alicia Capilla.
This was what happened to Aurora. ‘My daughter was hospitalised for 14 days in Hospital Comarcal. The psychiatrist visited during this period. He spoke to me, my daughter and my husband and basically told us that it was all my husband’s fault for not spending enough time with her,’ reports Aurora’s mother.
‘At first they accepted that what had happened to me was due to the vaccine. But as more cases began appearing, they tried to disassociate the symptoms from the papilloma vaccine. They told me it was an isolated case, that it was psychological and self-induced. You end up believing them. You end up believing you’re crazy,’ acknowledges Aurora.
However, some doctors say, ‘the serious reactions that have been reported by those affected by the papilloma vaccine are coincidental reactions. That is, they coincide in time with the administration of the vaccine, but they don’t have a cause-effect relationship, as scientific studies have shown,’ explains Doctor Magda Campins.
For those affected, the causal relationship between injections of Garvasil and Cervarix and the multiple problems affecting their daughters is very clear. So what are the problems?
‘Autoimmune disease, fibromyalgia, joint problems, osteoarthritis, muscle problems, paralysis, headaches… There’s a pattern that repeats itself, but then each person reacts differently. Debilitating headaches, myoclonic movements, syncope, hand numbness, vision problems, neurological and dermatological problems, and fatalities. Or early ovarian failure, which isn’t on the datasheet but which is a problem recently described in a report from the American Association of Pediatrics. But they always say it has nothing to do with the vaccine,’ laments the president of the AVVP.
Autoimmune disease, fibromyalgia, joint problems, osteoarthritis, muscle problems, paralysis, headaches… There’s a pattern that repeats itself, but then each person reacts differently
One of the agencies that recently spoke out against complaints about side effects was the European Medicines Agency (EMA). Papilloma vaccine victims consider this organisation to be partly responsible for what’s happened because it’s in charge of regulating the vaccine at a European level.
In response to these declarations, the Nordic Cochrane Centre, an independent body responsible for reviewing health interventions, has issued another document, criticising the EMA and denouncing the conflicts of interest of those behind the study, and the lack of transparency of research into, and information about, the vaccine. Something also decried by those affected.
‘We’re not saying this is going to happen to everyone who receives the vaccine, but it is a reality and there should be information about it. No information is given about the possible side effects. I’m sick of hearing that it has no side effects. Firstly, people need to be informed. And secondly, if there are adverse effects, they should be recognised. The person should be helped, and research carried out,’ Capilla complains.
Defenceless in the face of as-yet undiscovered effects.
Aurora and others who have been affected know that the problem goes beyond strictly medical issues. In the long term, it ends up becoming a question of social neglect. The combination of misinformation and the lack of medical and administrative recognition of the adverse effects makes those affected feel lonely and powerless.
‘You feel really lonely because they deny it has anything to do with the vaccine; they don’t treat you the way you should be treated, you come home and see your daughter suffering. They don’t give us any help at all. Everything has to go through private doctors, which is very expensive. There’s no way to get help because they don’t concede there’s a problem. I had a business that I had to give up to dedicate myself to my daughter. Washing her, giving her food, everything,’ Aurora’s mother relates.
Eight years after the vaccine changed her life, Aurora is now feeling a little better. ‘It comes in spells. And it’s true that lately they’re shorter and less frequent. But we have no idea what the future holds. Will her ailments disappear? Or will they get much worse as she gets older?’ her mother explains.
Aurora has not given up: ‘I felt lonely at first. I watched my friends living their normal lives, playing sports and looking at me like I was crazy or some kind of freak. But it’s also made me strong. I think everything happens for a reason, and if it had to happen to me to stop it from happening to other people, then so be it.’