Dear Canadian Reporters/Producers/Editors,
“Journalism can never be silent… it must speak, and speak immediately.” –Henry Anatole Grunwald
I used to be one of you. I believed in the virtue and value of journalism. I still want to believe.
Before you dismiss this letter, please know that I spent nearly a decade working for a major news outlet in this country. I am neither a conspiracy theorist nor a religious zealot. I resigned from my position and left the career I loved last year in large part due to a widely and critically unreported story. Yet I’m still haunted every moment of every day by the scale of pain and suffering that was uncovered.
There are numerous young Canadian girls and women who are ill with similarly debilitating symptoms. They believe it is due to adverse reactions to the HPV vaccine.
Before you click away, please know that their experiences increasingly corroborate recent medical findings, mainstream media reports abroad and a growing body of published scientific research around the world. Their cases are not isolated.
On July 13 2015, the European Medicines Agency announced the launch of a safety review into the HPV vaccines. The review investigates and focuses on two specific conditions, POTS (postural orthostatic tachycardia syndrome) and CRPS (complex regional pain syndrome).
But let’s rewind.
Two years ago, I chanced upon a Letter to the Editor sent to the European Journal of Neurology in 2010 by board-certified U.S. neurologist Dr. Svetlana Blitshteyn. She specializes in dysautonomia – and POTS, a complex form of autonomic dysfunction that few physicians can diagnose or are even familiar with. In the letter, she had detailed a case of symptom onset following the HPV vaccine Gardasil.
Coincidentally, she was in the process of publishing follow-up findings. She was documenting more and more cases following the administration of this particular vaccine.
Although I was initially highly skeptical of any possible link, her expertise as one of the leading neurologists in this particular field prompted me to look into it further. What followed included thousands of hours of investigative research and heartbreaking phone interviews. This was not an exercise in confirmation bias. I expected to perhaps speak with a few ‘hysterical anti-vax’ parents and find that these early findings were unsubstantiated. What I found instead were very rational but deeply distraught families suffering similarly traumatic ordeals. Albeit anecdotal, there were numerous young girls in Canada and abroad experiencing similarly disabling symptoms who were previously perfectly healthy.
Excruciating pain. Crippling fatigue. Severe nausea and gastrointestinal issues. Heart rate irregularities. Limb weakness. Convulsions.
And more. It was not long before a global pattern began to emerge.
Top Danish doctors and autonomic specialists (Dr. Jesper Mehlsen and Dr. Louise Brinth of Frederiksberg Hospital) were observing similar findings on a larger scale in their country and earlier this year, this in-depth documentary aired on Denmark’s major broadcaster TV2.
Their findings were subsequently published in the highly credible Danish Medical Journal and the journal Vaccine. The authors state that while a link can be neither confirmed nor denied, there is a recognizable pattern of symptoms and further research is urgently warranted.
On June 1, Danish health authorities were forced to open five regional HPV vaccine assessment centres. Even the doctors investigating the possible link were surprised by the number of girls being referred (over 1300 as of September). Lead researcher Dr. Mehlsen is now calling for an urgent ‘time out’ as these possible side effects are investigated. It should be noted that he is a stanch supporter of vaccines and has even previously worked in a consulting capacity for the pharmaceutical company involved.
Another Danish expert, Jeppe Schroll, believes the reason major previous safety studies may have missed these possible side effects is that they focused only on confirmed diagnoses/specific existing diagnostic criteria and researchers didn’t consider these often undiagnosed cluster of symptoms. With so few doctors able to make a proper diagnosis, the symptoms are also often incorrectly labeled as psychogenic issues.
Denmark is far from an anomaly.
Japan, which withdrew its recommendation for the HPV vaccines (both Cervarix & Gardasil) in 2013 due to reports of adverse reactions, is also actively investigating cases. The Health Ministry stated just weeks ago that at least 186 patients have still not recovered from painful symptoms.
Japanese researchers continue to review a growing number of cases similar to those first published in the Internal Medicine Journal. The Japan Medical Association recently also published new guidelines for doctors dealing with painful symptoms in patients following HPV vaccination. It states that the term ‘psychogenic’ should be avoided.
Victims hit cervical cancer vaccines (The Japan Times)
Analysis: Experts at loss over pain from cervical cancer vaccination (The Asahi Shimbun)
Researchers: Cervical cancer vaccination linked to symptoms affecting nervous system (The Asahi Shimbun)
Cervical cancer vaccinations shaping up to be hot issue amid reports of severe side effects (The Asahi Shimbun)
Survey: Dozens of students suffering after cervical cancer vaccination (The Asahi Shimbun)
“It’s as if time has stopped still since the vaccine” (The Japan Times)
Again, Japan is not an anomaly. There are alarmingly similar cases in numerous countries, including Canada. However, almost all of these girls and young women are being routinely dismissed by countless doctors who aren’t able to ascertain what is wrong with them and who refuse to investigate further or report a possible link. Many of the girls have missed months if not years of schooling. Similar to cases abroad, one Ontario girl was referred to dozens of top specialists here without any answers for four agonizing years. She was one of the few fortunate enough to undergo tilt testing and finally be properly diagnosed with an autonomic disorder in the U.S. last year. The neurological report emphasized that her symptom onset and functional impairment occurred one day after the HPV vaccine.
Other cases of POTS and CRPS onset in close temporal association with the HPV vaccination are being increasingly reported independently and scientifically around the world, with many symptoms consistent with severe dysautonomia:
But with so few doctors able to diagnose these conditions, the number of officially reported/confirmed cases doesn’t reflect the true scope of this potential issue. Reports also do not reflect the potential severity of these associated symptoms. Even in the often-criticized VAERS system, the many reports of fatigue, pain, nausea, fainting and even seizures are often dismissed as minor, temporary or psychogenic – when in fact they may be physically, severely and permanently disabling.
More recently, similar media reports have begun emerging from other nations. In the UK, various publications have detailed nearly identical symptoms and experiences among British girls, as well as thousands of adverse reports to health authorities:
Mums claim HPV vaccine left their daughters having seizures (Manchester Evening News)
A few of these troubling accounts in the UK also date back years:
Case Studies: Concerns over cervical cancer vaccine in Ireland (Irish Examiner)
HPV vaccine support group concerned at side effects (The Irish Times)
Questions raised over vaccine (The Corkman)
Legal action to challenge cervical cancer vaccine in schools (Evening Echo)
Without any support and few treatment options, girls there are now attempting to take their own lives: Las suicidas de El Carmen De Bolivar (VICE News). The issue has recently been raised in the Senate of Colombia and the medical records of 205 girls have now been submitted to the Ministry of Health.
Reports have also emerged of similar symptoms in young patients who were enrolled in the clinical trials for Gardasil 9 (India & Peru):
There has been similar coverage, both recent and archived, from various other countries in both the EU and beyond. A brief sampling:
Holyrood urged to take lead on cancer vaccine issue (The Scotsman)
Mother’s warning over anti-cancer vaccine (STV News)
HPV vaccine may have caused rare disorder (Radio Sweden)
EU drug agency investigates cancer vaccines (Svenska Dagbladet)
The vaccination choice (TV4)
HPV vaccine: Thousands suffer serious side effects (Yahoo News/Zoomin TV)
“Since the vaccination my daughter has been very sick for four years” (RTL Nieuws – coverage in Dutch)
“La vacuna de Erika” (El Mundo)
“L’affaire du Gardasil” (France 5)
Even some of the pharmaceutical companies’ own documentation has previously referenced a possible link to dysautonomia. Despite how difficult it is to diagnose, POTS was reported as an adverse reaction in a trial participant for Gardasil 9 according to Merck’s own product monograph (unfortunately, this reference on Page 7 has since been removed in recent months).
Aside from all these troubling reports and recent published findings, there is further cause for concern. The benefits have been highly and widely touted for the HPV vaccine. However, there is no definitive evidence yet that it can prevent cervical cancer as marketed and promised. Studies evaluated only pre-cancerous lesions as clinical endpoints (CIN1, CIN2 and even CIN3 lesions can regress on their own). There is also no clear indication of how long immunity will last. If it wanes after a certain number of years, then infection may simply be delayed.
There is now also disconcerting research suggesting women who get the HPV vaccines may actually be more likely to be infected with other high-risk strains not covered by it.
Vaccine-type human papilomavirus and evidence of herd protection after vaccine introduction (“The increase in nonvaccine-type HPV in vaccinated participants should be interpreted with caution but warrants further study”)
Comparison of HPV prevalence between HPV-vaccinated and non-vaccinated young adult women (“Vaccinated women had a higher prevalence of high-risk nonvaccine types”)
Human Papillomavirus Vaccination – Reasons for Caution (New England Journal of Medicine)
“We need to talk about HPV Vaccination – Seriously” (New Scientist)
There is no doubt that cervical cancer is a terrible and deadly disease. Any public health tool to combat it should be welcomed. However, getting this vaccine is not a guarantee against it. In developed Western nations, the proven efficacy of pap testing has also already dramatically reduced rates over the years. The majority of cases that aren’t prevented occur in the developing world where there is little access to regular testing.
There have been other concerns and valid observations raised by respected medical opinion leaders worldwide, including UK public health policy researcher Allyson Pollock: Efficacy of HPV Vaccines: A Review of the Evidence Used by WHO.
Some legitimate concerns were even initially raised in Canada by independent researchers:
Human papillomavirus, vaccines and women’s health: Questions and Cautions (Canadian Medical Association Journal)
Evidence and the Marketing of the HPV Vaccine (Impact Ethics)
Governments and health authorities continue to maintain that the benefits outweigh the risks for the HPV vaccine. But the true risks, as well as the true benefits, still remain unclear. There are undoubtedly advantages to preventing specific strains, but the public deserves all the facts.
For the record, I do not wear a tin foil hat. I am quite pro-vaccine and believe in the importance of herd immunity against fatal childhood diseases – it saves lives. But I also believe that in the case of the HPV vaccine specifically, further investigation is urgently merited.
Most of the Canadian families I’ve spoken to also completely support vaccines. They are far from ‘anti-vaxxers’. They simply want to know what happened to their daughters, how to get them healthy again – and why so many thousands of others are suffering similar conditions worldwide after the HPV shots.
Unlike more proven life-saving vaccines against diseases such as polio, this is still a relatively newer vaccine and thus should be subject to more scrutiny. Please don’t forget it is manufactured by the same company that tried to discredit concerned doctors over Vioxx. It should not be forgotten that many millions of people were prescribed that drug and did not suffer ill effects – but enough of them did.
Anecdotes are indeed highly unscientific but that does not mean they should be entirely dismissed. The media can and must play a critical role in reporting and possibly detecting potential problems with a drug. In Denmark and Japan, although there is still great medical division over the issue, there is also balanced news coverage as well as open medical debate and ongoing scientific investigation. In North America, there has been little to no mainstream coverage of the underlying questions regarding the HPV vaccines in recent years, despite early initial concerns reported by major media outlets:
Is HPV Vaccine Safe? (CBS News)
Feds continue to ignore mounting Gardasil bodycount (Washington Examiner)
My girl died as ‘guinea pig’ for Gardasil (New York Post)
There is also no one investigating the possibility of death in some rare cases, despite similar circumstances reported by a number of families around the world. Here in Canada, there has been no public review whatsoever in the death of a young teenage girl despite a coroner’s report calling for an urgent inquest and stating that the possible link cannot be ruled out.
Journalists who have tried to raise any valid questions about the HPV vaccine since have been widely vilified, condemned and criticized. In February, as many of you are aware, The Toronto Star published a front-page story that was ultimately retracted. While the timing, approach and presentation of it may not have been ideal, the concerns raised by families within the article were and continue to be urgently valid.
Politicians and senators in various nations including Japan, Denmark, Ireland, Colombia and France have asked for independent reviews in their respective countries.
A full independent review is merited in Canada as well.
Despite the understandable fear that has permeated any reporting of this issue, please follow in the footsteps of some of your international counterparts and do your duty as journalists now. Don’t bury, avoid, ignore or delay this story any longer. Dig beyond the wire copy. Review the medical research abroad and consider the cases here at home.
There can be no answers if there are no questions raised.
Correlation indeed does not equal causation. That is trumpeted over and over again. But at what point does it become irresponsible not to investigate or report on the correlation, particularly when it is increasingly medically documented by specialists?
Vioxx was once deemed and proclaimed completely safe. So was Thalidomide. So was DES. While Gardasil is not necessarily the same, especially given the potential benefits involved, it merits equal review.
There are Canadian families who deserve to be listened to. Whatever the cause of their daughters’ debilitating symptoms, nothing can be confirmed or ruled out unless their cases are reviewed. They deserve further medical investigation and answers to their suffering.
And the public deserves to make a more informed choice.
A Former Fellow Journalist