Riko Muranaka is a medical doctor and journalist. In a guest article for MedWatch she describes how unscientific claims about alleged side effects of vaccinations against human papilloma virus (HPV) triggered a panic reaction in Japan: In 2013, the government recommended the vaccinations, but opponents raised their voice against the vaccines that prevent cervical cancer. The vaccination rate dropped from over 70 to below 1 percent. Some people believe that in some cases HPV vaccines could have side effects like Complex Regional Pain Syndrome (CRPS) or Postural Orthostatic Tachycardia Syndrome (POTS) – which are considered as sub-syndromes of “HANS”, a syndromic idea that was first discussed in Japan purportedly caused by HPV vaccines. According to a WHO statement from 2017, pre- and post-licensure data provided no evidence that CRPS and POTS are associated with HPV vaccines.
Because of her science-based reporting on this topic, Dr. Muranaka experienced massive hostility. Unlike before, she became unable to publish in Japanese media. Her family was threatened, and she was sued by an anti-vaccination doctor. In 2017, Riko Muranaka received the John Maddox Prize from “Nature” magazine for her work in providing evidence-based information to the public.
Earlier this year, for the first time in history the World Health Organization (WHO) named “vaccine hesitancy” as one of the top global threats together with other obvious threats such as climate change, pandemic flu or Ebola. The WHO also stated that they decided to tackle especially the elimination of cervical cancer by increasing the coverage of HPV vaccinations this year: that means to firmly act against the spread of the irrational anti-vaccine movement, and make people understand that the HPV vaccines are safe and effective.
You may not be aware but Japan, a country famous for natural disasters, is the starting point of an anti-HPV vaccine tsunami.
As I saw, a programme about the HPV vaccines broadcast in December last year on German TV (”Impfung gegen Gebärmutterhalskrebs: Werden Risiken systematisch verschwiegen?”), Germany is already seeing the anti-HPV vaccine ripple originating from Japan. Vaccine hesitancy is not obvious in the beginning, but it is usually too late to respond to it when you realize it is there.
[box]Riko Muranaka works as a lecturer at the Kyoto University School of Medicine. She is a doctor and journalist. In 2017, she was awarded the renowned John Maddox Prize by the magazine “Nature”.[/box]
In April 2013, HPV vaccines became routine use in Japan. But just two months after their introduction, the government made the very perplexing decision to keep the vaccine in the National Immunization Programme, but to “temporarily” suspend proactive recommendations for it. This was evidently in response to alleged adverse reactions such as seizures, chronic pain, inability to walk, memory loss, poor school performance or truancy. Parents filmed their daughters having seizures with their mobile phones to post the clips on the internet and gave media interviews. Doctors said those symptoms are most likely psychosomatic pseudo-seizures caused by the emotional condition such as stress, pressure or distress, but without abnormality in the brain waves. Pediatricians said they had seen many such patients in adolescence, especially girls but also boys, even before the HPV vaccine was introduced. However, doctors went all quiet after being harshly criticized like “I was told it is only mental by a heartless doctor” or “Do you say my daughter is only acting?”
The government established the Vaccine Adverse Reactions Review Committee. After a long discussion on the Christmas Day in 2013, it concluded that their symptoms were most likely psychosomatic disorders – functional symptoms caused by emotion without organic abnormalities.
The government did not rule in favor of science
But somehow, the government kept on suspending the vaccination. People thought the government still doubts the safety of the HPV vaccines, and also the eligible girls could no longer receive the vaccines for free. The vaccination rate dropped from over 70 percent to below 1 percent in 2013, and stayed at this level until today.
What made things worse was a small group of doctors who started proposing a new syndrome called HANS – HPV vaccination-associated neuro-immunopathic syndrome – to suggest that the HPV vaccines had serious adverse reactions in early 2014.
These doctors’ claims are based purely on patients’ complaints and their limited clinical impressions. The doctors could never show sound scientific evidence for their hypothesis – the test results of the patients are mostly negative. But instead, they argued only that the medical technology is not good enough to prove it. The doctors claimed that the vaccines are causing damage to the brain or the central nervous system, only because the symptoms are so diverse and inconsistent.
Symptoms shall occur even years after vaccination
They accused “main stream doctors” including me of not looking at and listening to the patients carefully enough. Probably this criticism is true in a sense that we doctors should pay more attention to patients’ feelings in general, but it doesn’t mean that the vaccines are unsafe. They claimed HANS can appear anytime, even months and years after the vaccination: the average time of onset is about one year, and in some cases more than four years from the vaccination. They said that the symptoms will never disappear, too.
What is more concerning is the treatment of “HANS”. Since the doctors believe it is an auto-immune brain damage, girls who seek a new doctor until they are diagnosed with vaccine injury sometimes end up receiving invasive care like plasma apheresis or steroid pulse therapy. Some girls with chronic pain undergo a surgery called Spinal Cord Stimulation (SCS): An electrode is implanted to alleviate pain, even though the method is not approved for children in most European countries; no guideline exists for it in Japan. Some girls are given a few different anti-dementia drugs, which are not tested for teenagers: Their doctors claim that the HPV vaccines caused dementia so that the girls cannot memorize new English words, are slow in simple math or forget handing in the homework.
Truly “shocking” data?
On a meeting of the Japanese Ministry of Health, Labour and Welfare (MHLW) on March 16, 2016, Dr. Shuichi Ikeda, a MHLW appointed principal researcher who investigates adverse events of HPV vaccines, presented shocking mouse experiment data regarding the HPV vaccines, with the media present. He showed a slide with the brain sections of a mouse marked “HPV” glowing in green florescence, emphasized with a white circle. Dr. Ikeda was the Dean of the Medical School of Shinshu University, as well as the university’s Vice Chancellor at that time.
In the interview shown on the same night at the popular TV news programme “News 23”, appearing with the illustration of injected mice and photos of brain sections, he said: “Apparently, the brain is damaged. It shows the objective findings common to the girls complaining of brain damage”.
According to Dr. Ikeda, when mice were given a flu vaccine, a Hepatitis B vaccine, and an HPV vaccine, only the brain section of the mouse vaccinated with the HPV vaccine ten months later showed a “deposition” of an abnormal auto-antibody.
Many Japanese believed that the government finally found scientific evidence for serious side effects of the HPV vaccines.
A single mouse experiment?
After months of investigation, I found the researcher who designed and performed the mouse experiment. What he told me was even more shocking than Dr. Ikeda’s presentation.
According to the researcher, first of all, the number of mice used for each vaccine was only one. He had injected vaccines into genetically modified mice that produce auto-antibodies naturally, just by aging for a few months. He sprayed the blood serum taken from these special mice, full of auto-antibodies, to the brain sections of the normal wild-type mouse and took pictures.
Of course, there were brain sections which showed green florescence sprayed with blood serum from the mouse given other vaccines, too. Moreover, the vaccine dose given to the mice was, in relation to their body weight, one hundred times that normally given to humans. I called Dr. Ikeda’s presentation a “fabrication”.
Meanwhile, the Japanese government continued the “temporary” suspension of the proactive recommendation for HPV vaccinations. As a result, on July 27, 2016, a world-first class-action lawsuit against the government and manufacturers demanding compensation for the alleged damage caused by HPV vaccines was filed in Japan.
And a few weeks later, Dr. Ikeda filed a libel lawsuit against me, together with the publishing house “Wedge” and its former editor-in-chief , claiming my allegation of fabrication was a defamation. According to the lawyers of Dr. Ikeda, he had just “cited” the data that the other researcher in his group obtained, but not fabricated data. The lawyers said that the lawsuit is not about science, but only about my allegation of fabrication – so they will never argue anything scientific at the court. These lawyers were famous for taking side of the plaintiffs and leading major drug injury lawsuits like a lawsuit on HIV contaminated blood products, which was one of the largest drug injury lawsuits in Japan.
Megaphones at the court proceedings
During the court proceedings, the court gallery was filled with anti-vaxxers, some of them in wheelchairs, waving banners, shouting from megaphones. Also, politicians including the former governor of Nagano prefecture gave speeches to support them at the site of the district court at some hearings. I was the only science-based voice well-heard in the society, and apparently should be silenced. Dr. Ikeda’s legal action frightened many media outlets, which stopped publishing articles or comments of me.
Later in 2016, an investigation by a committee was finished that looked into the data presented by Dr. Ikeda and interviewed him and other researchers involved. They concluded it does not constitute a “fabrication” according to their guidelines, but Ikeda should show remorse over spreading misunderstandings to the public, correct his comments and publicize his correction, as well as show the reproducibility of the results by using a sufficient number of mice. Most of the media just reported that “the committee concluded it is not a fabrication“. One paper that wrote “Ikeda didn’t apologize or spoke a word of remorse” was intensively and persistently attacked by the anti-vaxxers – and became quiet about this issue. A week later, the government issued an unusual statement to deny Dr. Ikeda’s single-mouse result, but as far as I know no media reported about it.
Both the difficult situation concerning HPV vaccinations in Japan and my situation as a journalist didn’t change.
A book that I had written was not published, even though the publication day had been announced, my photo had been shot, and the cover design was finished. I learned the lawyer of the publisher suddenly advised the CEO of the publisher to suspend the publication. Since then, I spoke to eight other major publishers, but all of them said the same thing. “It is well-written and very interesting to read, but we can’t publish it now”, they in a similar manner argued.
More than one year after the lawsuit was filed, I was awarded the John Maddox Prize on November 30, 2017. This prize, commemorating the name of the Editor-in-Chief of “Nature”, is given to an individual who promotes sound science regardless of difficulties and hostilities.
It was a great honor for me. But at the same time, I felt that it is a shame as if Japan was called an anti-vax nation: Even the government yielded to the anti-vax media campaign supported by anti-vax doctors and lawyers.
When I received the prize, I hoped that the media could use it as an opportunity to adjust their reporting. But that didn’t quite happen. Some commentators supported me by writing why the papers and TV stations don’t report about my award. The editorials of some newspaper even argued that prioritizing science over emotion could be wrong sometimes. After the award, quite a few Japanese TV stations were filming me to make a documentary programme, but none of them has ever been broadcasted. And the government continued to suspend the proactive recommendation for HPV vaccinations.
The media and its duties
I believe alarming the society about potential risks is one important role that the media should play – but only if the available evidence justifies it. Moreover, when it is realized that the alarm was false, the media has to alarm about it as loud as the false alarm they made first. This work is difficult. In Japan, I am so sorry but the media failed in this regard – and false news about HPV vaccines started to spread all over the world.
As of today, the Japanese government is still continuing the “temporary” suspension of the HPV vaccination, for more than five years by now. And the lawsuit from Dr. Ikeda against me is continuing for more than two and a half years, too. During that time, my situation as a journalist continued to be very difficult. The court plans to decide the case next month, on March 26. I hope the judge will make a decision based on scientific truth, but not on the plaintiff’s excuse to silence science.
Good news is that after the John Maddox Prize I could finally publish a book with the ninth publisher.
The book is called “A Hundred Thousand Wombs”: In Japan, three thousand lives and ten thousand wombs are lost to cervical cancer every year. In Japan, a class action lawsuit is said to take ten years, and it seems that no politician decides to restart the HPV vaccination campaign until the lawsuit is over. “A hundred thousand” is the number of wombs that could have been saved, but are about to be lost in the future.
I started writing about the HPV vaccines just like other topics I had written, but in the end, I found myself becoming a part of the story. It never happened to me in my life. My favorite is the last chapter called “ Mother and Child” , a story of the girl who received HPV vaccines, suffered from severe symptoms, underwent invasive care, and finally started recovering when she accepted the fact that her suffering doesn’t have to be caused by the vaccines.
In Germany, the vaccination rate has been rising steadily up to 50 percent by now. But it can be like in Japan anytime. As I wrote, vaccine hesitancy is not obvious in the beginning, but is easy to promote and spread, while building vaccine confidence is incredibly difficult on the contrary.
I would like to publish my book “A Hundred Thousand Wombs” in German to let people know what happened in Japan, and what could happen in Germany as well.
Photograph: Takuma Suda