Parents take their fight to be heard to Parliament

By Morag Livingstone, Rubia Dar and Dean Cox

A group of parents unhappy that there is no recognition by our Government that a significant number of girls are falling seriously ill following receipt of the HPV vaccine are taking their case to an open Lobby in Parliament on Wednesday 25th October.

The HPV (human papilloma virus) vaccine is a vaccine expected to reduce the incidence of cervical cancer in the future and has been offered to girls in schools since 2008 as part of the NHS childhood vaccination programme with at least 8 million doses being given. Available to all girls from 12 to their 18th birthday and free from GP surgeries if they miss it at school at an estimated cost to government of over £1billion, it is currently being considered for boys as well.

The media has previously reported that in some ‘rare’ cases girls are falling ill following the HPV vaccine, some seriously. The Medicines and Healthcare Products Regulatory Agency (MHRA) has the view that there is no reason to conduct a further safety study.

In the UK, as of April 2017 over 8800 adverse reaction reports (ADRs) on HPV Vaccine have been made via the NHS “Yellow Card” system. Three times higher than the controversial MMR vaccine, which was investigated.  Freedom of Information requests and other research also shows that over 3000 ADRs can be considered “serious” and 240 “chronic”.

Fiona (not her real name) describes her unexplained chronic illness following the HPV Vaccine. Her story is sadly repeated by many others we have met.

“Before receiving the HPV vaccine at 14, I was an active, mostly healthy child … with lots of energy. I enjoyed walking, swimming, horseback riding etc. after school. No matter how long my day was … [Now] I can’t even remember what a day with energy feels like … The day I got the first HPV vaccination I came home feeling sick and incredibly tired and had to go straight to bed. I wasn’t well enough to go to school the next day. “

Fiona’s Mum went to the school nurse and the local health centre to speak to her GP about the severe tiredness and nausea following the vaccine. Both told her the same story – the illness was unrelated to the vaccine; that there was no way of registering side effects and that the illness were “most likely” temporary. Eight years later, Fiona who is now in her early 20s says:

“I honestly don’t think life was ever really ‘normal’ again. The constant exhaustion became very limiting. I had to stop swimming which I had done at a competitive level and greatly enjoyed. My fatigue now is sometimes completely debilitating and I spend much of my time in bed.

Not long after the last [HPV] injection, the chest pain started … I was in a class at school and suddenly got a crushing pressure and pain on my left side. I felt faint and dizzy and was in so much pain I could barely talk.  I ended up going to a local A&E. The pain eventually subsided and further ECGs came back normal and so I was discharged.

This was the start of an incredibly scary and difficult journey to getting diagnosed. I have experienced debilitating, severe and intermittent chest pain ever since. Recently, my fainting has become significantly worse and now happens almost daily which is frightening and dangerous, and has led to several concussions.

It was 4 years after my symptoms started that I was finally put on a week-long heart monitor. This monitor picked up severe spikes in my heart rate. It showed times when my heart rate was quickly accelerating from 70 bpm to 180 bpm. These ‘spikes’ coincided with when I was experiencing chest pain or fainting. I was given a probable diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) which has since been confirmed by a specialist following further testing. I have gone from being a normal teenager to a disabled one, and it seems to have all been triggered by the vaccine.”

At the Parliamentary lobby the parents are presenting evidence from the UK and abroad which they say shows the vaccine warrants further investigation by the regulator in the UK – not least around POTS (a life altering and debilitating chronic health condition that is disabling and can, in the worst cases be compared to congestive heart failure) and how Serious Adverse Events are analysed.

The MHRA and the European Medicines Agency (EMA: based in London) have previously rejected this international evidence, perhaps because they only account for ADRs linked to the known side effects defined by the pharmaceuticals in pre-licensure trials.   A recent statement by Lord O’Shaughnessy the Parliamentary Under Secretary of State at the Department of Health and a Government Whip adds to this view: “The ‘MHRA’s evaluation remains that the number of reports does not exceed what would be expected to occur in the absence of HPV vaccine and that there is no proven causal link between the HPV vaccine and the girl’s illness”.

The most recent UK figures (March 2017) show that there have been 60 reported cases of Postural Orthostatic Tachycardia Syndrome across all vaccines – all 60 are suspected to be caused by the HPV vaccine. While the families understand that there is no proven causal link to their girl’s illness and the HPV vaccine no one has been able to prove that it is not the vaccine causing their daughters to be ill either.

Caron Ryalls, one of those who set up the campaign group Time for Action after meeting many other mothers whose daughters fell ill shortly after receiving the HPV vaccine told us:

“We are going to Parliament armed with credible research, much of it from peer reviewed medical journals which highlights the same clusters of symptoms being experienced by girls all over the world after having their HPV vaccination. We also have a lot of research and data acquired through Freedom of Information requests. The MHRA has started to put lengthy and stringent copyright clauses on the responses to us, effectively preventing us from sharing our findings widely.  We want MPs and peers to be aware of this, and to be able to examine the data and our findings under Parliamentary privilege.  We believe the apparent disproportionately high number of reports of serious chronic conditions reported with the HPV vaccination, compared to other vaccines, will leave MPs and peers extremely shocked.”

Given there is a report in the Netherlands from the Pharmacovigilance centrelareb (a WHO collaborating centre) which states that a causal relation [in one form] of the vaccination and “long-lasting symptoms can not be concluded nor excluded”; given the context of problems found with Pandemrix (Swine Flu Vaccine) and Narcolepsy; Epilim – sodium valproate in pregnancy and the emerging scandal of vaginal mesh tape injuries; given that there is an outstanding complaint against the EMA with the EU Ombudsman concerning the safety review of the HPV vaccine undertaken by the EMA in 2015; given that there is also a growing body of evidence where medics abroad have mapped and published clusters that show additional side effects; given that there is legal action taking place in France, Spain, Germany, Japan, Columbia and large awards have already been made by the US Vaccine court, it is curious that the MHRA and EMA claim no further study is needed to establish if something outside of the pharmaceutical defined parameters of risk is happening.

Professor Peter C. Gøtzsche, Director of the Nordic Cochrane Centre explains what medics and researchers abroad are finding:

“There are already some results that have shown that these girls with POTS and neurological pain syndrome, that they have higher antibodies against autonomic nervous tissue than other people. So this could be an explanation … we have seen this happening before with the influenza vaccine called Pandemrix, where a rare disease called narcolepsy … that it was found out that the vaccine can actually cause this … At present we can’t say anything about whether these vaccines cause these rare neurological harms but we have started seeing a picture that makes it likely that something happens which is likely an auto immune reaction which we know from many other things and drugs and vaccines”.

It is natural to want to know why your healthy, happy, sports loving daughters ended up, sometimes within hours of receiving the vaccine, unable to move, being chronically and physically sick and in pain. Not just for a short period, but for years. But to date few seem to be providing answers or listening to the collective experiences of these families.   We have met them on a number of occasions, and the stress of having ill children and no one taking them seriously is palpable.   It is not just their worlds that have been thrown upside down but also their belief systems. Many of the mums feel guilty. It is, after all, they who signed the consent form for the HPV vaccine to be given to their daughters. They did so without question.

Surprisingly the group isn’t calling for the withdrawal of the vaccine from the market but they do want a thorough investigation to find out why some girls apparently suffer serious adverse reactions following the vaccine, whilst others don’t. They are positive that someone will listen and that they will get answers not just about what happened, but around how best to treat their daughters. Honourably, they are determined to ensure that the vaccine is safe to be administered to others as a mass immunisation programme without question or fear. They want to know other parents can sign the consent forms and know their children will be safe.

The repetitive nature of the stories of how the girls were treated after they fall ill is also challenging.  Doctors and hospitals often dismiss the girl’s illness or symptoms as psychosomatic or blame the parents for causing harm to their children. In a number of cases families have been threatened with social workers, or asked about abuse in their families or “is mum hurting you”. Mums have been accused of Munchausen by Proxy Syndrome.   Girls have been told that they are “making it up”; they could “stand up if you wanted to”; or it’s “a response to the needle when the injection was given”.

Caron Ryalls tells us: “To say we have all been to hell and back in the last seven years would be a gross understatement. It took nearly 3 years to convince doctors that her illness wasn’t psychological … For several years she was housebound … it was very isolating to be largely self taught from the confines of a bedroom. The toll this took on my daughter is indescribable.”

The experiences from the Time for Action families and others not involved in the campaign are shockingly repetitive – and it is terrifying to hear. In one of the worst we have met: Social Workers locked one of the girls up in hospital for 18 months. She was only released because a new social worker relooked at the case and confirmed there was nothing wrong with her.

These are ordinary families who were going about their lives. They believed in the vaccine. They had ambitions of their daughters going to university, or getting married, of being safe. They did the right thing for their daughters and had them vaccinated to keep them safe from cancer. They read the leaflet about HPV vaccination, and didn’t ask any questions. They believed that if their children ever fell ill, or something went wrong they would get help. That hasn’t happened, yet. These are seemingly ordinary women who are proving themselves to be remarkable. They are ordinary mothers who never intended it to be thus. The parents believed that this vaccine was safe and that any side effects would be mild and short lasting. They are not anti-vaccine. They do want their experiences and evidence to be listened to. They never intended to set up Time for Action that is leading the lobby to Parliament. Caron Ryalls adds:

“Our ultimate goal from the Lobby is to gain the support of MPs to encourage the Health Select Committee to undertake a very thorough Inquiry into the HPV vaccination programme and for patients and carers to be involved in all aspects of the Inquiry, including being consulted on the remit and being allowed to submit evidence.”

It is true that at this stage no one can categorically state it is the vaccine that is making the girls fall ill. If there is no recognition by government or the regulators after Wednesday’s Parliamentary Lobby that HPV vaccine needs to be relooked at – then perhaps there is a deeper question that the UK government needs to answer – at what cost do we think the Pharmaceuticals are right and those whose children fall ill after a vaccine are wrong?

Government holds the responsibility to keep us safe, and this includes safe vaccines. As will be seen at the lobby the parents will present a growing body of credible evidence from around the world that indicates medical professionals and families think something has been missed. It may not be the vaccine making these girls ill, but what if, as in the case of Pandemrix (Swine Flu Vaccine) and Narcolepsy, Epilim – sodium valproate in pregnancy, vaginal mesh tape injuries no one listens to these families, and it is?

Lobby of Parliament at 11am on Wednesday 25th October, Room W3T

To contact the families who set up the campaign: Time for action website: www.timeforaction.org.uk

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3 thoughts on “Parents take their fight to be heard to Parliament

  1. Keep up the good work. The MHRA could refer HPV vaccine to the EMA PRAC again.
    As a Valproate campaigner I have tried to get politicians to act and they just say it’s a Regulatory issue.
    With mesh and valproate debated last week, metal on metal hip replacements in court this week and HPV being addressed tomorrow it really is time to get to the bottom of why regulatory agencies are so slow to act.

    We need a Judge led Public Inquiry into medicine and devices regulation and licensing to ensure that when we leave the EU we have a regulator fit for purpose, an effective reporting system (Yellow Card) and a precautionary approach to drug and device warnings and safety.
    #FACSaware supports all pharma harm campaigns and I wish you well.

    Like

  2. The World Health Organisation (WHO) recommend this vaccine and state that it is ‘safe & effective’. However, their own little-known global database of adverse drug reactions at http://www.vigiaccess.org report 400 deaths (inc. 19 ‘sudden deaths’ recently added) and 897 Neoplasms (inc. cervical cancers and pre-cancers) amongst the 297,020 adverse reactions listed. They acknowledge only approx. 10% of adverse events get reported. It is time that we are told the truth.

    Like

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