On launching the Medicines and Medical Devices Safety Review recently Jeremy Hunt, The Secretary of State for Health and Social Care acknowledged that “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”.
Being included in this safety review after years of campaigning must be welcome relief for those impacted by Sodium Valproate, Vaginal Mesh and Primodos. However, there is no such relief for those who believe the HPV Vaccine injured their daughters. Despite having to care for their very sick girls while searching for a treatment plan that works, these families will continue their active campaign, just to be heard.
In the 10 years since its UK launch the official figures for the HPV Vaccine from the UK Medicines & Healthcare products Regulatory Agency (MHRA) show that about 9million doses of the HPV Vaccine have been issued.
There are approximately 9,000 adverse reactions recorded on reports submitted to the MHRA through their Yellow Card system of which over 3000 are classified as serious. As the chart below shows, this is more than for any other vaccine even though the HPV Vaccine is only given to girls (approximately half the population that for other vaccines). The chart issued by the parent led Time for Action campaign in 2017 for a Parliamentary Lobby was also included in an open letter sent to Mr Hunt following the above safety review announcement. The figures contradict replies given to parliamentary questions on the HPV Vaccine that state: “reports appeared to be similar in frequency and type to those that had been reported with other vaccines.”
The MHRA continually monitors safety of medicines including vaccines. The MHRA is a member of the European Medicines Agency (EMA) who did conduct a safety review of the HPV Vaccine in 2015 after concerns were raised by medics in the Nordics. The summary of the EMA findings indicate that based on “available scientific evidence” the HPV vaccine is safe.
As with all vaccines the MHRA continues to monitor safety. This is done, in part, through adverse reaction reports recorded on the MHRA’s Yellow Card system. A patient or family member as well as medical professionals can raise a Yellow Card if they suspect an adverse reaction to a vaccine. Parents from across the UK and Ireland are consistent when they tell us that when they suggest the vaccine may be a factor in their daughter’s illness they are told, immediately and without examination, that it is “just a coincidence”. So, despite their concerns they are often not told about the Yellow Card system – they have to find out about this themselves.
Families who established the campaigning group Time for Action dispute that their daughters being ill is a ‘coincidence’ as do others we have spoken to across the UK and Ireland. We’ve met the parents turned campaigners many times. They are cautious and factual, careful at presenting what they have found. They check sources before publication in a manner that would give the best researchers a run for their money. They deal in facts: not so much for the fear of being discredited by those who (wrongly) label them as anti-vaccine but because they know that getting the facts wrong will set them back in finding answers for their daughters. Right now, finding out what caused this; to enable a treatment plan; to ease the pain of their child and stopping it from happening to others is what matters to them most. They would like it not to be the vaccine, but based on their research and a growing body of medical evidence from around the world they have no other explanation.
Mr Hunt, when launching the safety review of medicines also acknowledged “that the response to these issues from those in positions of authority has not always been good enough. Sometimes the reaction has felt too focused on defending the status quo, rather than addressing the needs of patients.”
Amber* who is 17 relates to this statement. Her story is familiar to the many other families we’ve spoken to who believe their daughters are HPV Vaccine injured.
Amber started to feel ill within hours of getting the HPV vaccine that she thought would protect her from cervical cancer. She vomited shortly after, was in physical pain and her health has declined since. Three years later, this once healthy, active sporty girl is, on a good day, able to get out of bed to sit downstairs. Her skin is pale, slightly yellow with dark rings under her eyes. Photos from before she fell ill show a girl full of joy de vivre. Now her eyes are lifeless as is her physical appearance. Tired to her bones. She is unable to go to school and feels her teenage years, education and future have been stolen from her. Friends have faded away as she copes with constant headaches, menstrual problems, joint pain, and gastro issues that sit on top of the POTS and chronic fatigue that she has been diagnosed with. Her family had to fight to get this diagnosis and they carry on the fight to find a treatment plan that works – not just for these conditions but for other symptoms she has that don’t fall into the parameters of this diagnosis. They also fight to ensure the education of this A* student continues. All this between endless, exhausting appointments tinged with medical disbelief as to their reasoning as to the cause of her illness. In this she is not alone.
Social Media provides both reassurance that there are others who have connected the date of getting ill with the vaccine and shock at the number of previously healthy girls with differing degrees and combinations of symptoms manifesting in long-term chronic illness searching for answers. Girls report a pattern of similar symptoms. Most of these symptoms are listed as HPV Vaccine side effects or a response to the injection itself but what official documentation doesn’t explain is whether or not such side effects are short term, or not. The girls tell us symptoms often start with something that they themselves dismiss as being a normal part of growing up. These symptoms then build over time to serious debilitating and disabling health issues. It is as if their bodies are eating themselves.
Regulators and doctors continue to deny that there is any link between girls falling long-term chronically ill and the HPV vaccine. While many medics and regulators say it’s not the vaccine they can’t say what is making these girls ill either. Evidence is needed for that, and despite The European Court of Justice recently ruling that vaccines can be blamed for diseases if there is “specific and consistent evidence” the growing body of evidence and concerns presented by patients and families doesn’t seem enough for the UK regulator to listen to them.
In the UK the central document of record for suspected issues is via the Yellow Card System and 10 years after the introduction of the HPV Vaccine in the UK the figures extracted from this system clash with official comment that there is no need for a new safety review. While submitting a yellow card doesn’t provide proof that it is the vaccine, the collective data shown above does raise questions that are not being adequately addressed by regulators.
In launching the Medicines and Medical Devices Safety Review Mr Hunt promised changes to the current system because: “… if women are raising these concerns all over the country, we need to find that out very quickly at the centre, so that we can take action more quickly.”
If those raising concerns on HPV Vaccine safety are proven right then, not only will these words come back to haunt Mr Hunt and the regulators, but as patients concerns were also ignored for Sodium Valproate, Vaginal Mesh and Primados history will be repeated – and not for the first time.
8th March 2018