Why can we no longer question vaccines? There is plenty of evidence that we should
The Contaminated Blood inquiry opened its doors this week after decades of campaigning. The inquiry will investigate claims of a cover-up at the Department of Health, including documents being destroyed. This year is also the 20th anniversary of the MMR scandal where false claims of harm were made. One, more than the other, influences the ability to question medical products, particularly vaccines.
Since the MMR scandal, those that raise questions, and their head above the parapet, are often labelled as anti-vaccine, scaremongering or, as in Ireland, “emotional terrorists”. Those who question regulators and authorities are faced with a wall of “available science” that tells us a vaccine is safe. But, where does much of that “available science” come from? Often, the manufacturers themselves.
Internal confidential reports, of which we have copies, show that regulators sometimes put more credence on manufacturer information than evidence gathered from those who believe they are vaccine injured. Known problems with medical products were also kept hidden and out of the public domain, sometimes for years.
This was evidenced in a recent court case relating to Pandemrix. As reported in the BMJ: “new information is emerging from one of the lawsuits that, months before the narcolepsy cases were reported, the manufacturer and public health officials were aware of other serious adverse events logged in relation to Pandemrix”. Prior to this, authorities used specific language that served to reassure and counter questions raised about Pandemrix “available science” indicating the vaccine is safe, including (a get out of jail free card) “monitoring continues”. A comment from a retired paediatrician in the USA, asks “Where is the outrage?”. Where? Indeed.
The language used around “available evidence” by health authorities is repeated for the HPV Vaccine. But, despite private conversations indicating concerns, some medics and scientists have told us that speaking out about the HPV Vaccine can cause a moral dilemma. This may be because shortly after its 2008 UK launch, the then Minister for Health, Dawn Primarolo MP (now Baroness) described it as “the first vaccine that can directly prevent cancer”. Such claims have since been toned down to “protect against cervical cancer”; but, medics and scientists we have spoken to whisper “but it’s a cure for cancer” show that this belief remains despite a lack of scientific evidence as to efficacy or direct correlation.
Those who support compulsory HPV Vaccination (and for the programme to be rolled out to boys) last week issued an article stating that those who raise questions are also part of an anti-vaccine lobby. They obviously have not spoken to the families that we have spoken to over the last few years; whose daughters were healthy pre-vaccine and post vaccine are not. While they believe their daughters are vaccine injured most still believe in vaccines. They just want to know they vaccines are safe, and find a treatment plan for their daughters.
It’s not just the public who question vaccines that are being vilified. Recent events in the scientific research community also show that those with highly credible scientific backgrounds are at risk. Last week, Professor Peter C. Gøtzsche was removed from the board of Cochrane, an organisation whose independence in science helps shape government policy around the world. Cochrane say there have been complaints. As previously reported on this blog, many in the scientific community believe that he has been ousted because he has been questioning both the methodology of science used to ascertain safety of the HPV Vaccine, and had previously raised question on regulatory transparency around its safety. Responding to a statement released by Cochrane Gøtzsche says: “Scientists should challenge the status quo with good science, which is what I have tried to do in my long career, and this will of course lead to “complaints.”” If his treatment is anything to go by then others without such pedigree will be worried about what could happen to them if they too question the status quo.
The media also plays a role in the ability to question a vaccine without fear. Last week, both BBC Newsnight and ITV’s This Morning had vaccine slots - reflecting on the MRR vaccine and medicine safety more generally. Guests and medics told us that vaccines are safe and, in the case of Newsnight, that the “anti-vaxxers” say “facts can be dismissed”. Those that question vaccines were labelled conspiracy theorists, and that many people think they are experts and more clever than doctors because we can “Google it”. The implication being, if you question: you are anti-vaccine or scaremongering, even though history shows us that the authorities ignored those who raised questions about Thalidomide, Vaginal Mesh and Pandemrix to name a few. In these cases, as in others, the available evidence tells us that Joe Public is often ahead of the regulators.
Jeremy Hunt, MP, admitted as much when, as Health Secretary, launched a review into medicines and medical devices in February 2018. This on-going review, led by Baroness Cumberlege, covers Vaginal Mesh, the pregnancy test Primodos, and Sodium Valporate, the anti-epilepsy medicine: “We must acknowledge that the response to these issues from those in positions of authority has not always been good enough,” he said. “Sometimes the reaction has felt overly focused on defending the status quo rather than addressing the needs of patients, and as a result patients and their families have spent too long feeling that they were not being listened to, making the agony of a complex medical situation even worse,” he said.
Only a few weeks into the review, surgical mesh for stress urinary incontinence was suspended, immediately. Baroness Cumberlege said that she was “appalled at the seriousness and scale” of the stories she had heard from women and their families. Women who had been raising concerns, for years.
Medical regulators seem to believe that any negative media will damage a vaccine programme, when those we have spoken to want transparency, whatever the results. We all know that there are risks to having a vaccine. For a public health programme, surely it is not unreasonable to have transparency about what the risks are and if some are more susceptible to those risks than others? Accurate and complete information allows an informed decision and consent.
A report in the Daily Mail last week also lauded the HPV Vaccine as safe, however, the article is a shoddy piece of journalism and littered with out-of-date information. It not only quotes old figures but also uses the figures related to a vaccine, Cervarix, that has not been part of the UK public health programme for 6 years, another variant, Gardasil replaced it.
The Daily Mail also stated that English health officials received 3,972 'yellow cards' - warnings of side effects - between 2010 and 2013. Figures received through freedom of Information (2nd August 2018) show that there have been 9215 individual ‘yellow cards’ raised with over 23,000 different side-effects. Many of the symptoms are gastro, respiratory and reproductive problems. Approximately a third are long term or unresolved and reports show multiple symptoms per individual. Since 2008 there are 9 suspected deaths in the UK.
Scientists state that only up to 10% of adverse events are reported to a national database. With approximately 3 Million girls vaccinated since 2008, then, if we extrapolate - adverse effects for HPV Vaccine in the UK could be over 3%, and 1% serious. As the numbers of those vaccinated are often based on the number of doses issued, as opposed to administered, these figures could be low. The figures on which these calculations are based are also not publically available as the UK doesn’t publish safety figures for the HPV Vaccine on the yellow card system as it does for other vaccines. The publically available European system does show suspected harm figures for the UK. However the figures are much lower than those received via freedom of information from the UK regulator. It is not clear why.
This data may still be, as the UK and European regulators claim, insufficient to determine a causal link, but surely any other product, like a child’s car seat would have been recalled by now for further tests. Instead those who question are told outright they are wrong, or vilified.
The This Morning report and the Daily Mail headlined article the “HPV vaccine IS safe” elicited a passionate response on facebook from one mum whose daughter was fit and healthy before the HPV Vaccine, and isn’t now. She runs a (closed) Facebook group (HPV Vaccine - Help and Support for Parents) for parents wanting more information and to which I was given access more than 6 months ago. She is not anti-vaccine, both her daughters received the HPV vaccine, and this site does not advocate not having the vaccine, but encourages personal research. Even so, she has, since her video post, received a message telling her that it is “impossible” that the vaccine could have caused her daughter ill-health.
“Impossible” is overstating the case. Medics accept that some harm will happen in relation to medicines and vaccines. That is what the purpose of releasing a medical product with “side effects” - a certain percentage of people are expected to suffer harm - for the greater good.
“Expected v observed” is another claim made to bat away challenges over safety. The Daily Mail article also states that there are no “unexpected” side effects. This may be true in that “expected” side effects are listed on the patient information leaflet. But where does it say how long the side effects will last, and how serious they will be? Most of the 20 or so UK families we have met or spoken to have girls who have been chronically ill for years. Some up to 8 years after having the vaccine. The similarities in their stories from around the globe are repeated time and again. How can the long-term nature of the side effects be “expected” when the original trials, where side effects are determined, only lasted 6 months.
It is incomprehensible that those families and the scientific community trying to find out why girls were healthy before the vaccine and why they are not now - are being vilified; particularly when internal information shows scientific questions on safety have been made, but publically - consensus confirming safety is reported, often without question.
This weekend, the Sunday Times also revealed that Public Health England tried to stop endorsements for a book by Dr Aseem Malhotra , whose advice helped Tom Watson, MP, Deputy Leader of the Labour Party and Shadow Secretary of State for Digital, Culture, Media and Sport - lose 7 stone in weight. It’s not the only time Public Health England (PHE) have used public money to stop a news report. Internal documents show that they “geared up to become a proactive engagement strategy if necessary to further inform the media and the public on HPV Vaccine Benefit and known risks.” According to the BMJ report, a similar strategy happened with Pandemrix.
We also have copies of a Freedom of Information request that shows the pressure PHE recently placed on Sky News when they were planning to report on the HPV Vaccine. PHE stated that it was “irresponsible to call the HPV Programme into question. Any damage could potentially cost lives” and that “There is categorically no evidence to suggest the HPV vaccine has caused any significant harm in girls” quoting a review from the Cochrane centre. (This review is the one called into question, by Professor Gøtzsche et al. Now he has been removed from Cochrane, it remains to be seen if his questions will be answered).
PHE made this statement of “no evidence” after a USA Federal Court, specialising in vaccine injury, determined that that Gardasil as “more likely than not” to have caused the death of 21 year old Christina Tarsell. The USA are also paying out millions of Dollars for “Injuries and Death” from the HPV Vaccination. Both the 8-year court case and the details of the US Vaccine National Compensation Programme are publically available.
In an email following a call with the Sky News, PHE reinforced their earlier position: “we would really strongly ask Sky not to run the story”. They didn’t.
The ability to question a vaccine without being dismissed as anti-vaccine, irresponsible, or just plain wrong is, apparently, increasing. Yet the public health authorities originally dismissed failures in a number of other medical products as, folly. It was only when impacted families, turned campaigners and scientists kept the pressure on by raising and discussing difficult questions that safety issues were uncovered. What’s worse in many cases, they regulatory authorities and manufacturers hid what they knew. As the saying, repeated in the BMJ more that 2 decades ago and referred to by the Judge in the above case: An absence of evidence does not mean evidence is absent.
So, when we’re discouraged from questioning a vaccine, or from running a story that raises difficult questions, we should remember that.
We should continue to question the parameters of the information that we have been given, the methodologies of research and what “available science” really means. It is irresponsible not to.
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