How Anti-Vaxxers will Help the Pro-Vax Movement in 2014

For anti-science movements, such as the anti-vaccine movement, conspiracy theories are lifeblood. In fact, many of these movements would not survive if it were not for their unique kind of science fiction so implausible it would make Philip K. Dick blush. The anti-vaccine movement survives on several of these conspiracy theories, most of them so far-fetched that the majority of reasonably intelligent parents who read about them can dismiss them out of hand.

For example, we have the worldwide conspiracy of pharmaceutical companies, every government on the face of the earth, the global medical community, all medical schools, medical journals and other medical organizations, every state public health department, the Centers for Disease Control, the FDA, the Gates Foundation---and I'm out of breath. That conspiracy claims that vaccines are dangerous, but this aforementioned cabal somehow organized in the shadows, away from the prying eyes of the public and a scandal-hungry media, to whitewash the dangers of vaccines and act as if they are live-saving interventions. As someone who volunteers for a non-profit, I can tell you that it takes my partner weeks to schedule a simple phone call between the five members of our Scientific Advisory Board. Chances are, a conspiracy this vast--the largest conspiracy in the history of humanity, by the way--is the stuff of science fiction. But, as I said earlier, most science fiction writers would realize that no reasonable reader of fiction could suspend disbelief long enough to buy into such an idea.

Anti-vaxxers, on the other hand, do nothing but suspend disbelief. Anti-vax organization, National Vaccine Information Center (which tries to trick parents by naming itself in a way that makes it seem objective), has been trying to convince visitors to its Facebook page that Voices for Vaccines is a "pharmaceutical front group" because Paul Offit is on the Scientific Advisory Board. I'd like to know how that actually works. Dr. Offit receives no royalty from his rotavirus vaccine (which, incidentally, has saved hundreds of thousands of lives, particularly in the developing world). He is, in fact, a vaccine pioneer. Naturally, we'd like someone with that level of knowledge about vaccines and vaccine-preventable disease to look over our posts before we publish them, unlike National Vaccine Information Center, which relies on people who have no medical or science backgrounds, to write their propaganda. We choose to include the most knowledgable people in the world of infectious disease because we care about, you know, truth and science. And they come to Voices for Vaccines as volunteers, receiving no pay for their advice and bringing absolutely no pharmaceutical money to the endeavor. We are a small organization, led by parents and sustained entirely by small donations from our members.

I can state unequivocally that Voices for Vaccines has never taken money from a pharmaceutical company. Ever. Now, by not taking pharmaceutical money, we are not suggesting that organizations that do are somehow in those companies' pockets. They are not. However, we chose not to muddy the waters, because that would only give an AVers an opportunity to create doubt. But magic realism is immune to facts. If they don't like the facts, they make up their own. As they've done with Voices for Vaccines--an organization that terrifies them to such a degree that they and Age of Autism are beginning to publicly writhe and froth, even attacking pro-vaccine parents. (Reading the Age of Autism post should offer a reasonably objective reader a peek into the paranoia-soaked brain of the most strident anti-vaxxers). I am confident that once the mainstream media notices these ad hominem attacks, the negative publicity that results from news coverage will scare new parents away from the anti-vaccine camp. After all, if they are willing to publicly attack ordinary parents like Karen Ernst for simply choosing to speak up for a public health intervention, how reasoned and reliable can their information--and their leaders--be?

I've publicly challenged NVIC and Age of Autism to produce proof of pharmaceutical payments to our grassroots, volunteer, parent-led organization. It has yet to do so.

Another conspiracy is that doctors are always "pushing" vaccines on new parents because they are getting the big bucks from pharmaceutical companies. I think most of us know where the big bucks are when it comes to pharmaceuticals--after all, we're bombarded by ads for these products during NFL Sunday and reruns of The Bourne Identity. Erectile dysfunction drugs, drugs for conditions seen in later middle age, such as rheumatoid arthritis, and drugs for mental health issues. I have yet to see a commercial from a pharmaceutical company for a childhood vaccine. The reality is that vaccine companies don't make much money from vaccines. And "Big Pharma's" largesse doesn't extend to secret under-the-table payments to your local pediatricians. Suggesting otherwise will immediately make a reasonable parent suspicious of the organization or person making such a suggestion. Especially when their pediatricians are rolling in to the clinic in their Honda Civic.

But here's why I know that pro-vaccine advocates are going to have a great 2014, and why the anti-vaccine movement is in a state of disarray. Not only is there a great deal of infighting among the more visible members of the anti-vaccine movements, it also has suffered some staggering defeats, especially in the latter part of 2013. For example, the vaccine hearings that were going to be headed by Darrell Issa, who has enjoyed nearly $40,000 in donations from the anti-vaccine Canary Party, were called off after Issa and his staff were bombarded with calls from concerned constituents. Another example was what happened when Katie Couric sacrificed her journalistic integrity for ratings on her fast-sinking talk show (which was canceled a couple weeks later) by doing a sensationalistic segment on the HPV vaccine. The outcry was nearly universal; media outlets that had once given anti-vaccine activists equal time in stories about vaccines criticized Couric and her producers; and even Couric distanced herself from the show.

The anti-vaccine movement knows its in trouble, and that's why it has been pushing its conspiracy theories even harder now. Not so long ago, it could act as if it were a legitimate movement questioning the drug safety. But the media, and, increasingly, parents, have caught on. The fatal flaw in their bet on the success of conspiracy theories is that the more detailed their theories, the more strident they sound in promoting them, the crazier they sound. It becomes less and less likely that a concerned parent will buy into the theories. When they engage in activities, such as actively working to ban Facebook users who comment on vaccine stories, they come across as defensive and nutty. Parents see that pro-vaxxers do not work this way. You will not see a pro-vaccine Facebook page "ban" a user who spouts anti-vaccine rhetoric. Why? Because the more these people talk, the more damage they do to their cause--and, crucially, the more opportunities they offer pro-vax voices to correct their misinformation with facts and science, giving parents questioning vaccines on the page a chance to weigh both sides.

Here's what you will not find coming out of the pro-vaccine movement: Conspiracy theories. Attempts to censor conversations about vaccines (this would work against us, because we welcome vaccine-hesitant parents into the fold; we want to answer questions, not shut them down). Personal attacks. Baseless accusations, such as Karen and I field on a regular basis, that we are "in the pocket of Big Pharma."

Parents notice this. And this is why the anti-vaccine movement is going to continue to lose relevance and visibility. So when a group of anti-vaxxers have decided to build a brand-new conspiracy theory that Voices for Vaccines' parent-contributor Amy Parker, a mother from northwest England who wrote about her experience growing up unvaccinated, is actually a CDC mole because a woman with the same name collaborated with Paul Offit on something, it will do far more harm to their cause than it will to ours. In order for this idea to gain traction with a parent, she would have to suspend disbelief enough to believe that Karen and I know this Amy Parker at CDC (whom I've never heard of), convinced her to write this false first-person account of growing up in an idyllic Lake District community in northwest England, tweak the language enough to make it sound like it's written by someone born and raised in England, then steal a picture of some unsuspecting mom off the internet to go with the story--and then, after all that subterfuge, use the CDC mole's real name.

Logic and reason have never been the strongest aspects of the anti-vaccine movement, and parents are catching on. UPDATE: We are now fielding e-mails from people telling us that anti-vaxxers have told them Amy Parker "does not exist." Keep it coming, please.

My fervent hope for the anti-vaccine movement in 2014 is that it will keep the conspiracy theories coming. That it will continue attacking parents who are pro-vaccine. Keep working on that picaresque that has everyone who vaccinates his or her child and then chooses to speak out about it being the "Pharma Shill." Fan the flame that keeps that vast, worldwide conspiracy of silence about "the dangers of vaccines." Keep it coming, because it's swelling the pro-vaccine ranks every day.

Author's Note: I want to make clear that the criticism of the anti-vaccine movement in this piece deals with anti-vaccine activists, not the more "casual" non-vaccinating parents whose decision not to immunize their children is made out of concern, fear, and misunderstanding. I get it. I was almost one myself.

In the Media, A Bad Day for Vaccines

By Karen Ernst


I write this at the end of a bad day in the media for vaccines. It’s not that there was bad news about vaccines; it’s that the good news was ignored in lieu of anti-vaccine misinformation. The most disappointing of these media stories occurred on Katie Couric’s daytime talk show, Katie.


For weeks, the Canary Party (a group of anti-vaxxers who have actually formed a political party based on being anti-vaccine) have been shopping around an anti-HPV vaccine video on the heels of the cancellation of Congressional Oversight Committee hearing they had so hoped for. Katie Couric and her producers, in a cynical attempt to buoy her dismal ratings, bit.


To say I am disappointed in Couric would be an understatement. Since losing her husband to colon cancer 15 years ago, Couric has championed cancer prevention through colonoscopies. That she would allow a ratings ploy to trump journalistic integrity on the subject of a vaccine that prevents tens of thousands of HPV-related cancers each year in the U. S. boggles the mind.


The segment began with Canary Party Executive Committee member Emily Tarsell describing the death of her daughter, Christina, eighteen days after she received the Gardasil vaccine. Truly, nothing is as traumatic and devastating as losing a child in the prime of her life. The need for answers is more than understandable, it is necessary; and I can even understand parents seeking answers in and holding fast to a theory that makes sense to them, even if the theory doesn’t hold up scientifically. I want to be absolutely clear that I do not blame those parents for this. Instead, I blame the anti-vaccine movement for exploiting their stories in order to support their own wrong-headed ideas about immunization.


But because she brought her daughter’s story to a large, public forum, it is fair to investigate it to see if Emily Tarsell’s account holds up to scrutiny. Many facts surrounding Christina’s death are unavailable because Emily Tarsell is seeking compensation from the National Vaccine Injury Compensation Program. However, this court order from the NVICP judge indicates that the story does not support the theory that Christina died from an HPV-vaccine reaction. In it, the judge notes that despite Emily’s recall of her daughter’s unusual fatigue, “there is no evidence suggesting that Christina was so tired (or fatigued) that her health affected her daily activities.  For example, none of [those] who observed Christina while she was in Maryland . . . asserts that she changed plans due to tiredness.”


In fact, the findings note that Christina seemed anything but fatigued: “While in New York, Christina worked her part-time job for 18.75 hours.  On Thursday, June 17, 2008, Christina stayed up until midnight or 1:00 A.M. having dinner with her apartment mates.  Her apartment mates did not tell the police officers investigating Christina’s death that she appeared unusually tired.  Her apartment mate’s recollections suggest that, to their knowledge, Christina was normal.” In this document, there is also evidence that Christina may have suffered from a preexisting heart condition, but there was never a definitive cause of death.


Next up on Katie, Couric handed the floor over to Dr. Diane Harper, who made a number of spurious claims about HPV vaccines. The first claim was that HPV vaccines only offer protection for five years. Initial studies, however, do not support Dr. Harper’s claim, some showing that an HPV vaccine can offer protection for at least 8.5 years. And we may find that the vaccine offers protection for much longer as more evidence rolls in.  


Dr. Harper also asserted that pap smears are sufficient in detecting pre-cancerous cells which, she claimed, are 100% curable. However, between 2004 and 2008, 26,000 HPV-related cancers were diagnosed each year in the United States. 11,500 of these cancers were cerivcal cancers. In 2010, nearly 12,000 women died from cervical cancer. Despite Dr. Harper’s optimistic view of cervical cancer screening, it is far from perfect, and it would be vastly better to prevent infection than to try to cure the results of it.


Dr. Harper’s subsequent instructions that parents weigh the benefits and the risks of the vaccine is only sage advice if parents are receiving accurate information about the benefits and risks. The benefits, of course, are preventing cancer and death. The risks, as Couric presented them, were completely out-of-whack. A study of nearly one million girls who had received HPV vaccines found no significant health risks involved.


And it only got worse.  After talking to Dr. Harper, Couric provided air time to yet another anti-vaccine leader--this time SaneVax director Rosemary Mathis. SaneVax has a history of promoting misinformation and particularly horrible science. Inviting Mathis as a guest on a show about vaccination is the equivalent of inviting my kindergarten-age son as an expert on Tokyo because of his interest in Godzilla.


But it couldn’t all be a big commercial for anti-vaccine propaganda could it?  There must be hope because this is Katie Couric, right? As somewhat of a reprieve, Dr. Mallika Marshall provided some wonderful and accurate information about HPV and its vaccine. And she was brilliant. She was followed by a mother-daughter pair who endorsed the HPV vaccine.

The segment ended with Dr. Harper encouraging parents to get their daughters gift certificates for pap smears for their 21st birthday and Dr. Marshall encouraging parents to vaccinate.


Couric may have considered this balanced coverage since she presented two sides about this vaccine. But you probably know that I’m not going to let her off the hook that easily.


In 1998, Andrew Wakefield hoodwinked journalists into reporting on a shiny new theory about vaccines causing autism. As you might remember, it was all a grand fraud from which Wakefield continues to profit. And the media helped him, even after studies were rolling in discrediting the theory that vaccines cause autism, the media continued to structure their news stories to create balance. On one side, a family that claimed their children became autistic because of vaccines. On the other side, people in lab coats saying this just could not be the case. The anecdote too often trumped the evidence, as often happens in cases of false balance. CJR’s Curtis Brainard discussed how these “subtly bad” media reports perpetuate myths about vaccines. These myths threaten us all.

Katie Couric’s television show threatened the lives of young girls and boys. Because their parents are being frightened away from a safe and important vaccine, there will be men and women in the future who will die from HPV-related cancers, and who could pass HPV on to unwitting partners. Today, Katie Couric gave the anti-vaccine movement a huge forum, and I am already mourning the lives that will be affected because of it.

The Costs of the Fight Against the HPV Vaccine

By Dorit Reiss

This post stems from an HPV thread on the Katie Couric show. When I joined it, was a series of heart-rending stories by parents about the harms they believe the HPV vaccines caused to their daughters. There’s not a lot you can say to stories like these that will not sound heartless and cruel. But, after reading some, I felt that I had to try and speak up. This decision resulted in me spending several hours a day, from the Wednesday before Thanksgiving and through the weekend, commenting and, especially, responding to comments.

The thread on the Katie website is still going strong. I concluded that rather than engaging further I should write a more systematic explanation of why we need to speak up and respond to the claims of harm made against this vaccine, however painful it might be to the parents commenting to hear someone say there is no evidence that the vaccine caused their daughters’ illnesses, and however unpleasant the discussion becomes. Because as real as the pain of these parents and daughters is, without objective evidence of causation, their belief that this vaccine is to blame does not justify rejecting it in the face of substantial scientific evidence supporting its safety.

Let’s start with the basics. The HPV vaccines prevent infection with several strains of a virus that, at worst, can cause cancer. The virus is responsible for nearly all the cervical cancers in the United States and for “90% of anal cancers, 40% of vulvar, vaginal, or penile cancers, and 12% of oral and pharyngeal cancers.” (all data is available here.)

Most HPV infections clear up on their own. Infections can be detected and cancer prevented early with regular pap smears. But HPVis still responsible for tens of thousands of cancers a year and over three thousand deaths a year in the United States alone. Preventing those cancers and deaths seems like a good, important goal.

The vaccines were tested in clinical trials with over 30,000 women for over 7 years and found to have high rates of effectiveness and no serious problems. They cover strains responsible for a large percentage of those cancers. It has already reduced infections. You can find more in depth discussion of the HPV vaccines in a series of excellent posts by the Skeptical Raptor.

Why oppose something that can do so much good? Well, part of the opposition stems from religious objections having to do with a perceived connection between the vaccine and sex. But that was not what this battle was about.

Shortly after the vaccine came out, several parents of girls who suffered medical conditions or died claimed that the causes of their deaths or harm was the vaccine. The stories are both scary and heartrending. And as these stories became public, more parents heard them and started associating their daughters’ illnesses with the vaccine. I do not doubt the real suffering and distress of these families. My heart goes out to them. How can one not sympathize with a parent grieving because a 17-year-old girl is dead, or a teenager in constant pain? 

But feeling for hurting girls, and hurting families, does not mean that one uncritically accepts claims that the vaccine was the cause of their suffering. In fact, the causation claims behind these stories are often extremely problematic. Sometimes, even the temporal connection is weak (e.g. Gabi Swank developing symptoms weeks after the vaccine). The problem is that bad things happen to teenage girls regardless of the vaccine. They can suffer a variety of medical conditions, and sometimes, healthy teens do die. The question in each case like this is: do we have evidence that the vaccine caused the harm? And the answer in these cases is often no. These stories generally do not have medical evidence supporting the connection between the vaccine and the alleged harm. Nor do they suggest a plausible biological mechanism by which the vaccine could cause the harm.

Is there anything supporting them besides the parents’ belief in the harm? Well, a small number of studies looking at a tiny number of cases and conducted by anti-vaccine scientists supported the claims. Each of them when analyzed by scientists was found incredibly flawed. For example, this study by two anti-vaccine activists, looking at the deaths of two girls. This study, by a doctor, looking at one single case, ignoring other possible causes of the harm to the girl in question. Another study was addressed here.

In contrast, not only did the clinical trials – ongoing since at least 2001, covering tens of thousands of participants – not find serious risks, but two large studies addressing the question found none: A Kaiser study with almost 190,000 young women given 350,000 doses of the vaccine that compared harms in vaccinated women to the general rates in the population found no difference; and a Swedish study with hundreds of thousands young women comparing vaccinated and unvaccinated found similar rates.  Over forty million doses of the vaccine have been administered in the United States alone with no clear evidence of problems. Scientists’ best assessment is that the only side effect consistently connected with the vaccine is fainting on the day the vaccine is administered, and local reactions.  

This evidence paints a picture of a very safe vaccine. But the only way to make that point is to point out the weak evidence for the parents’ claims that the vaccine caused harm. This is bound to offend those parents: their belief in the evils of the vaccine is very strong, and they are may have difficulty considering that they may be wrong. In fact, they have been told in no uncertain terms that they are right. In the thread itself, they received support from anti-vaccine activists who rallied to their support, using the tried and true tactic of personal attacks on anyone speaking in support of the vaccine, accusing them of being heartless, shills, trolls, ignorant, Hitler, and so forth. I’m mentioning this as fair warning to parents who may want to jump in: this discussion is often conducted with high levels of vitriol (it’s even worse than French Revolution discussions; and people could be very passionate about the French Revolution).

Most pro-vaccine people do not enjoy dealing with vitriol or having their workplaces contacted, though I am sure there are some people who enjoy the conflict for conflict’s sake. And nobody that I know wants to hurt parents who have already been through so much with their suffering daughters, or who lost a child. But we are not going to stop speaking. And I think it is important for many of us to speak up about the HPV vaccines. It’s the same reason that you should speak up for vaccines generally, but let’s make it specific.

The grieving parents want us to accept their word that it was the vaccine that caused their daughters’ suffering. It is more than natural for them to look for a cause for their misfortune, and the vaccine is an easy target. But most of them have no medical evidence behind their belief the vaccine caused the harm. In some cases there are alternative explanations that their doctors pointed out. Explanations the parents, in their grief and pain, reject. The problem is that with these stories they want to convince other parents to reject the vaccine—that is, to choose not to protect their children against a virus that has been proven to cause cancer.

When that is what we are asked to do, a responsible parent not only can but should demand hard, credible data that the vaccine actually causes the alleged harm. Because there is a cost to not taking the vaccine. A cost in suffering and lives.

And there is no such hard evidence.

When it’s my child for whom I’m making the decision, rejecting a vaccine that can save him or her from needless suffering is a dereliction of duty. I owe my child the best protection available against dangers, health, and otherwise. There are too many things I can’t protect him against. But modern medicine offers a safe, effective prevention against some of the most dangerous types of HPV infections. My child deserves it.

There is a reason to speak up for the sake of these grieving parents, too: they do not deserve to feel guilty for vaccinating their children, or feel betrayed by the system, when the evidence does not indicate that the vaccine caused the illness. We should explain the evidence in the hope of reducing their guilt and anger. And hope some will listen.

Arguing for the safety of vaccines is worth the time and effort it takes, because it’s about our children, their health, and welfare. Vaccines protect them. They’re not perfect, and not 100% risk-free. No medicine is. But vaccines are remarkably effective and compared to pretty much every other drug we have, extremely safe.

So we need to keep asking, and pushing, and demanding. When a parent says the HPV vaccine harmed her child, we must ask for evidence that the harm came from the vaccine. Especially when the story is followed by a warning not to get the vaccine for your child. If someone asks you to leave your child unprotected against a dangerous virus that is completely preventable, tell him or her "I'm sorry, but I can’t make such a choice based on your belief, scientifically unsupported, that the vaccine hurt your child."

For my children’s best interests, I need to follow the data. I don’t want my child to become a cancer statistic.

Dorit Reiss is a professor of law at University of California. She has published writings on administrative law, and recently wrote "Compensating the Victims of Failure to Vaccinate: What are the Options?" Dorit is a member of Voices for Vaccines' Parent Advisory Board.