In a modern hotel on the outskirts of Dublin, Ireland yesterday something remarkable happened. As the sun shone people filed in to spend their day in a typically dark, and unremarkable, conference room. As they crossed the threshold expressions of surprise were exchanged at the number of other people there too. Rows and rows of those who had come, mainly from Ireland, to hear from an international group including scientists, parents and lawyers willing to share their knowledge and experience of the HPV Vaccine. A vaccine reported and lauded by health regulators around the world (with a few notable exceptions) to be “very safe” and that helps prevent cervical cancer. Statements repeated, without question but with added questionable claims in mainstream print and broadcast media, and not just in Ireland.
The reality for the parents of the girls who came is beyond comprehension. There is a sadness in their faces and in their gait that some try hard to hide but is reflected in many. Their daughters: young healthy girls whose bodies started to deteriorate shortly after receiving the HPV Vaccine and continued to deteriorate over months, sometimes years. Exhaustion, persistent vomiting, fainting, irregular periods, eye problems, heart irregularities, concentration issues and gastro problems are just some symptoms on a longer list. Not one symptom per child but a combination that creeps over the body as if the immune system is attacking its host.
Of course the vaccine may not be the cause – and there have been countless suggestions ranging from the mental health of the girls, to underlying health issues that, if true, raises the question as to why it is a mass immunisation programme. Many of the answers around safety that come from the regulators seem to raise more questions and don’t provide an answer as to why, in the UK (where the writer is based) there are more serious adverse effects for this vaccine than other vaccines. The fact is previously healthy girls are falling ill and some seriously so. They link their illness to the vaccine. They speak on blogs and private facebook groups looking for something that makes sense and are finding similarities – across continents. Many parents would prefer for their daughter’s illness not to be the vaccine not least because they gave consent based on the information they had and didn’t question. But the only credible explanation families can currently find is that their daughters were healthy before the vaccine, and now they are not. They didn’t ask for this reality, but it is what they live. Regulators disagree that it is the vaccine making the girls ill. In Ireland the regulator has been particularly arrogant towards those that question not the vaccine itself, but the vaccine’s safety.
Mums and Dads who raised their heads above the parapet to ask questions have only done so because they believe their daughters fell ill after receiving the HPV vaccine and because they have found no other explanation that makes more sense. But instead of listening to concerns Irish parents were met with the Director General of the Health Service Executive (HSE) branding them as “emotional terrorists”. But it’s not like vaccine safety failures haven’t happened before.
Even if parents, turned campaigners, are wrong (and many campaigners are proven right in the fullness of time and with a change in political will) to be called a “terrorist” anywhere, not least in Ireland, would make many ordinary citizens withdraw and hunker down. It is thus remarkable that they stayed standing and this conference happened at all.
Throughout the day collective sadness mixed with fear seems to tentatively move towards hope. Scientists, one after another, stand up and confirm events labelled by regulators as “chance” and “coincidence” are happening around the globe. Lawyers and other personal accounts provide additional confirmation that more questions need to be asked by the regulator. They audience are provided facts and science, some of which remains confidential as it is part of on-going research but there are indications, hints, of an answer and, more importantly for those in the room, and those girls too ill to be there, potential treatment plans. The respect shown by the presenters to these parents is equal to, if not greater than, the lack of respect exhibited to them by the Irish HSE.
As far as is known, no-one from the HSE or Irish media came to the conference. That is disappointing, especially as the purpose of the HSE is according to its website: “to provide safe, high quality health and personal social services to the population of Ireland” and the current Prime Minister worked as a GP so health is presumably high in his mind. You would think they would want to come and listen if only to check on the latest research and to see if questions on safety concerns are worth looking at again.
The HSE were invited by the IFICA, the conference organisers, either to speak or to a private meeting with the international medical professionals. It is understood that they replied by saying that they could meet offsite to update representatives on the most recent international research to illustrate how safe the HPV vaccine is. An extraordinary response when considering this group of scientists and lawyers dedicate their lives to determining which medical hypothesis stands up. If the HSE and other regulators spent time listening, being open to new science, and remembering that parents have been right on medical products before, then they would see the questions parents have are valid.
It wasn’t just the revelations of scientific fact that kept the attention of those in the room. Two women in particular made the hairs on the back of your neck stand up. One, Kesia Lyng travelled from Denmark. With voice shaking she spoke from the lectern about how she took part in HPV Vaccination testing. She went from being excited at helping science to despondency and having the same collection of symptoms that many other girls now face. Her story has been reported by Slate. She got a standing ovation, such is her bravery and such is the fear of speaking out, or speaking up, in Ireland.
The second woman, also with shaking voice spoke from the floor. She asked a question in the Q&A session but wouldn’t identify herself due to the stigma and fear her daughter would face outside of that room. Many, including this journalist, brushed away a tear or two listening to her. The strength needed to speak up is breath-taking. The added stress resulting from families whose girls are long-term sick being labelled “emotional terrorists” and “witches” is unforgivable. Even if the girls get better, such memories are unlikely to fade, particularly, as it was pointed out yesterday, at the ballot box.
Many who spoke from the floor or the lectern were at pains to report that they are not anti-vaccine and their family vaccines are up-to-date. There were, of course, people who do not believe in vaccines in the audience. But this conference was not about that, nor did the moderators let it be about anything other than the HPV Vaccine and giving families a safe place to listen and ask questions.
Questions were also raised about why the HSE wasn’t there to speak and to hear for themselves what was being said. Not just one person asked: “Where are the journalists?” A shout of “cowards” from the back of the room followed by clapping initially grated with this UK based freelance journalist. On reflection, the way mainstream media in the UK and Ireland report the HPV Vaccine means this view may well be justified. Families and campaigners have been knocking on the doors of established journalists, newspapers and broadcasters for up to 10 years telling their stories about the HPV Vaccine only to find many are spiked at the last minute.
Looking at the UK, where European responsibility for monitoring the safety of the HPV Vaccine sits, there have been some reports in the media of individual and “rare” cases. However, as more parents start to raise questions and campaign groups form it seems the editorial line changed. Mainstream media reports around the HPV Vaccine currently exhibit “a blind belief in authority” that Einstein said “is the greatest enemy of truth.”
In the UK we also know this has happened before, and not just with medical products. Mainstream media were told, but did not fully report, on campaigns for safe housing that resulted in the tragedy at Grenfell. They knew but missed what was happening with the Windrush generation despite some independent journalists and MPs raising the issue for years. Add to that the differences in public and private information held in the UK around contaminated blood and the mistakes made in identifying risks for the Pandemrix vaccine or vaginal mesh and we have to admit that regulators, as the overseers of vaccine safety, and media, as truth to power, could both do better.
At the end of the conference photographs were taken and parents went out into the last of the day’s sun taking with them an expanded knowledge base. Others around the world think like they do. New networks and connections have been formed, which should give a little bit of hope especially on the dark days that their new reality brings.
Considering the evidence presented, it is a shame and shameful that the HSE and mainstream media journalists aren’t in the room (at least in any official capacity) to listen to these scientific, legal and personal reports. Our knowledge and science doesn’t just stop, it develops. History shows us the importance of listening to parents who have children who are ill. If they are wrong about the HPV Vaccine they still deserve someone to look into the reasons why teenage girls are falling ill. The consequences of not taking them seriously, particularly if they are proven correct are as unnecessary as they are tragic.