How we create vaccine hesitancy

We have responsibility in the rising tide of vaccine hesitancy. Granted, most of the responsibility belongs to the charlatans and the grifters in the anti-vaccine community. But all of us have created a world where being afraid of vaccines only makes sense.

How did we do this? It was not our tone, and it wasn’t our failure to talk about the science. Instead, all of us agreed to view healthcare as a consumer commodity and took the expert opinion away from our doctors and gave it to the patients.

What do I mean? Take a look:

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Facebook post from Minnesota Star Tribune captioned with: “Armed with the right questions, you, too, can become an empowered patient ready to make informed decisions.”

I found that post while scrolling through my Facebook feed, and the caption caught my eye more than the article. For the record, the ten questions the article suggests you ask your doctor are very good and would have you relying on your doctor’s expertise.

The caption is problematic because it alludes to “empowered patients” and “informed decisions.” (People who dwell in the vaccine advocacy world likely instinctively bristle at the term informed decisions.) For far too many parents, such statements translate into a belief that they need to inform themselves ahead of time in order to get the medical care they want, and that the power and responsibility over their children’s medical care is solely the parent’s.

Dr. Jennifer Reich, in an article titled “Of natural bodies and antibodies: Parents’ vaccine refusal and the dichotomies of natural and artificial,” makes this point perfectly:

In fact, vaccine resistance lies at the intersection of two ideologies: one that expects parents to intensively invest in their children and the other that calls for individuals to become savvy consumers of technology and health interventions.

Oftentimes mothers, who make the majority of vaccination decisions, feel the duty to demonstrate their love for their children by learning all they can about healthcare choices, from feeding to sleep safety products to vaccines. They stand in sharp contrast to their grandmothers, who for too many years acquiesced to all medical advice and didn’t presume to demand more information from their doctors. In fact, many of us spent a lot of energy cajoling our grandmothers to ask their doctors why they were being prescribed Xanax in lieu of allergy medication or to ask for more testing of their heart health.

As I grow older, and the generation just behind me is wading through the too much pediatric information readily available to them, I see how the lessons we tried to teach our grandmothers needed to be titrated for the next generations–the generation of girls growing up under Title IX who were not accused of attending college only for an MRS degree. Even as we still live in an era of rampant sexism, 20- and 30-something women may not recognize how much more empowered they are than the Greatest Generation of women.

And when you do not see the path that was trod behind you, a doctor who tells you that he is not comfortable with your decision to eschew vaccines might seem paternalistic, which is why so many anti-vaccine parents accuse doctors of bullying. After all, aren’t you informed, just as society tells you to be in order to prove your skills as a decent parent? Isn’t it your commission to seek out empowerment in all things parenting, but in especially healthcare?

Perhaps you already noticed that the way doctors try to empower patients differs from the way parents think they are supposed to become empowered. It is true that information is power, but only good information is good power. And the best place to find good information? The experts. In other words, empowered patients know how to get the best information from their doctors.

Anti-vaccine charlatans wedge themselves into that tiny sliver of space that exists between informing yourself and getting information from your doctor. They convince parents that doctors are untrustworthy, bought, uninformed, and all manner of negative adjectives. Once parents are convinced, empowerment becomes a struggle between parent and doctor.

But empowerment ought to ease a parent’s mind rather than ramp up anxiety about becoming informed and understanding immunology. Empowerment ought to be a collaboration between doctor and patient, where patient feels free to ask questions at will and trusts that the doctor will give the best medical answers available at that time.

If we want parents to be vaccine confident, we need to assure them that they don’t need to know everything. We need to talk less about informed decisions and more about asking good questions and finding a trustworthy doctor.

Smells Like Desperation

Anti-vaxxers have shown, time and again, that they have little in their reserves except mean-spirited attacks against children, doxing, and otherwise moving to silence the voices of pro-vaccine advocates. That’s why “Levi Quackenboss” has written a fifth post tearing down 12-year-old Marco Arturo and his satirical video debunking the vaccine-autism myth. (Yep, five posts attacking a child. Who does that?)

While the unremitting anti-vaccine attack of a child shocked me, almost nothing that anti-vaxxers do to attack adults surprises me. I’ve had friends whose tires have been slashed, who have had threatening voice mails left with their spouses, who have had their jobs put in jeopardy by petitions to get them fired (for activities not related to their employment).

And then last week, some of my friends began disappearing from Facebook. I texted and emailed them. One friend told me that she made this post over a year ago, describing the harassment of our friend Allison Hagood. This post was just recently reported–sending her to Facebook jail for a week.

A few years ago when I first had the idea of writing a book on vaccines to share all I had learned about the subject I thought I would tackle the project myself. I thought I could handle it. I hadn’t written a book before but I’m a reasonably good writer and heaven knows I’ve bought and read enough books to open up my own public library at least twice over.

Then I remembered something.

I remembered that many people who are opposed to vaccines aren’t particularly nice. I remembered that these are the people who call the HPV vaccine, a vaccine that can literally prevent cancer, (YES CANCER!) a vaccine that is given to ten year olds “the slut shot.” They harass Dr. Offit, (a personal hero of mine) the inventor of a vaccine that has literally helped save thousands of lives, so much that he doesn’t dare do a book tour.

Yeah.

Before the book, I’d been writing and commenting on this subject for over a decade. During that time I’d been called all kinds of names. To my shock (because who the heck thinks saving kids from polio and pertussis is controversial?) I was called the kind of names that make you look at someone like they eat kittens for breakfast.

So I found a co-author. A brave, fierce, amazing, wonderfully intelligent co-author. I found someone passionate and devoted who I knew would be able to able to stand up in public with me.

And here we are a few years later in a place I never quite expected to be. As we start to work on a second book, I am sadly forced to write about my dismay and horror at the hours of hell that Allison has endured at the hands of those who refuse to remember history or let science be at our side.

In her own words:

“Since co-authoring a book for parents on vaccines (“Your Baby’s Best Shot: Why Vaccines are Safe and Save Lives”), I have been cyberstalked, cyberharassed, doxed, and threatened by anti-vaccine advocates. My personal home address was published on social media. My employer has been contacted numerous times by anti-vaccine advocates demanding that I be disciplined, fired, or silenced from engaging in vaccine advocacy. Death and rape threats have been posted against me. I am under almost constant harassment by anti-vaccine advocates fraudulently reporting posts and photos on my social media pages.”

This is the world we live in: a world in which a vaccine advocate — a person who believes that children deserve to be protected against horrible preventable diseases, diseases that maim, deafen and literally kill — that person is allowed by our society to be harassed at work at every turn.

I can only stand back and offer my support to someone who does not deserve to be treated this way. Please join me in standing for Allison Hagood as she stands up to those who shun science and threaten us all.

Another friend was sent to Facebook jail for a post where he used his own name.

How is this happening? How are they gaming the system? It turns out the anti-vaxxers are creating many accounts and sitting on them, sometimes for over a year. They are naming these accounts after actual people–friends of the people they want to attack. Sometimes they use the names of the people they are attacking themselves. And then, using those phony accounts, they report any post using that name.  I imagine they have to report quite a few and get their friends, also, to report, until the report sticks.

The abuse of Facebook’s algorithm is well-documented. It’s important to note that it’s not that Facebook doesn’t care about abuse. It’s that the users are the commodity, not the clients. So our dissatisfaction is not their top priority, and their is no recourse for someone who is being harassed by another who is abusing Facebook’s algorithms.

And that’s one reason the anti-vaxxers resort to this abuse and harassment.

The other reason is that they have nothing else. They have no science backing them. The doctors backing them are frauds like Andrew Wakefield or grifters like Mercola, Tenpenny, and Bark. No goverment agencies back them. In other words, no agency or person who actually is responsible for children should they become ill with a vaccine-preventable disease supports the anti-vaccine position.

Every time they report someone, they reveal just how desperate they are to shut down the advocacy of pro-vaxxers. The only thing we can do is to carry on.

 

 

Walgreens: Not Marco’s Puppetmaster

At some point last week, anti-vaccine crusaders decided that picking on a child was only so much fun, so they turned their sights on Walgreens:

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Multiply that times a hundred, and you get a taste of what Walgreens’ social media managers are dealing with. Why are they upset with Walgreens? Apparently, Walgreens’ name appeared in an ad on A Plus media (Ashton Kutcher’s site) in a post about Marco Arturo and his vaccine/autism video. The anti-vaaxxers claim? That Walgreens isn’t just advertising on the A Plus website Wellness section, but that they were creating this content and that Marco is just a puppet in the nefarious scheme to push vaccines for evil reasons. And of course, videos were created to promote the idea. Here is Forrest Maready’s contribution:

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A Plus, Marco, and Walgreens. Maniacal Laugh

What do they make of Walgreens advertising on the entire Wellness section of A Plus? Facts schmacts. Who needs them.

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Spot the Walgreens logos

And then, just like that, the banner ad on the A Plus post about Marco disappeared. Almost as though the internet were not made of paper and banner ads could be cycled through.

But not so soon. A Facebook page named Hear This Well declared victory! Finally, anti-vaxxers are being heard! Only moments from now will Walgreens and the government and the lizard people finally admit that vaccines do cause autism!

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Hear This Well was a campaign started by anti-vaccine parents of autistic children. Never heard of it? Ironic.

Because I never take anything at face value, it was that point I decided to write an email to Walgreens and ask them what was up. They sent me this official reply:

We had no knowledge of, nor connection to the development of this video.  Walgreens has been an advertiser on the website only in conjunction with the Vitamin Angels program, and again we were unaware of the video’s placement on our sponsored page.

While I would have preferred a statement which would have gone on to declare that the video was awesome and anti-vaxxers can scram, this response seemed pretty corporate and normal.

Forrest Maready (who made the video alluded to above), started to change his tune. Kind of. He issued this partial retraction on his Facebook page:

I don’t believe the APlus media writer knew about the video before it went up. I spoke at length with her, twice over the past two days and she has convinced me she found the post organically through a Facebook group she follows (not a member of) called A Science Enthusiast. She is an avowed Believer, I realize. She could be lying to protect an elaborate PR set up, but I think she is telling me the truth.

Of course, he went on to add that Marco’s video is still suspicious because of Marco’s shirt and because the Google dates don’t make sense to him. The retraction, then, is just that A Plus media isn’t part of some conspiracy, not that Marco could really be awesomely intelligence and well-spoken. If you are an anti-vaxxer, you have to feed the conspiracy theorists, after all.

If pro-vaxxers were conspiracy theorists, we would be all in a tizzy about the fact that the Hear This Well Facebook page disappeared.* But then, we know that Facebook pages, like banner ads, are hardly a constant in life and that there is no point getting wound up about it. I guess no one is hearing them at all any more.

*UPDATE: They’re back.

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Filling Wakefield’s Coffers

Really, that’s all VAXXED is about. The movie, written by, produced by, funded by, and starring Andrew Wakefield is about Andrew Wakefield. It came to the city where I live and caused very little stir.

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The Uptown theater in Minneapolis didn’t even list VAXXED in its marquee while it was being shown there.

Nor should it. Andrew Wakefield is a fraud, but he is also a washed up has-been. It was no surprise when friends of mine went to see the film, sitting in nearly empty theaters.

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My gut feeling is that this film, like many of the other anti-vaccine endeavors preceding it, will fizzle out with a whimper.

But not without a fight. The anti-vaxxers are goading each other to buy tickets to the film, even if they have no intention of using the tickets. They hide this racket by terming it a donation or calling it their “Angel Ticket” program. But what they are trying to do is to make this film seem like more of a success than it is so that they can push it out to more theaters across the country.

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The Hear This Well Facebook page is only one of many encouraging people to “donate tickets” (to whom? they don’t say) in order to sell out the theaters in Florida and pressure Regal theaters to show the movie nationwide.

I have to believe that Regal will notice that no one is actually in these so-called sold out theaters, although they might not care–as long as they are selling tickets. I have heard rumors from insiders that the VAXXED DVD is coming out next month, though. I don’t know any theater that would show a movie that is also out on DVD.

All this brings me back to the beginning. The movie itself is made by, written by, promoted by, and starring Andrew Wakefield. He tried to swindle us all once with a phony study and a media tour aimed at frightening us away from the MMR vaccine. Andrew Wakefield doesn’t do anything that doesn’t benefit Andrew Wakefield, and once again–even in the promotion of this film, the main beneficiary is Andrew Wakefield (and the main victims are public health and autistic people).

 

Anti-Vaxxers Dox a Child

One particularly vile and unethical way of shutting down opposition is to make public personal information about someone whose ideas oppose yours. Sometimes doxing comes with the presumption that others will then follow up by contacting and harassing that person. Often the defense on the part of the doxer is that the doxee’s information is already available online. However, giving that information to people who are ideologically opposed to someone makes that person a target, and thus doxxing becomes horrible and awful and you should never do it.

So why is it happening to a child? I guess the answer, if you don’t want to read any further, is that anti-vaxxers are narrowly hellbent on defeating anyone who champions vaccines that they don’t see a child as a child, a human, an actual person who should be off limits to harassment. Marco Arturo, whose adorable satirical video purporting to show all the evidence that vaccines cause autism (Spoiler: he reveals an empty folder), has become the target of Levi Quackenboss‘s doxing.*

I’m upset, my friends. And that’s really the motivation behind this post. However, because I don’t want to further the doxing and harassment, I won’t link to the blog post in mine.  But here you have a screenshot:

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In one particularly hypocritical point, “Levi Quackenboss” writes:

So who is Marco?  I’m not going to post his full name out of respect for him and his parents as well as their safety, but they’ve been a little sloppy about making trails to it so they should clean that up. The last names his parents use are not the name that he uses on social media.

Why is this hypocritical, you ask? You will notice that everyone who responds to “Levi Quackenboss” calls her she and her, not he or him–as you would expect with a man named Levi. Guess what. Levi Quackenboss is not the blogger’s real name! Oh shocking! (Or actually not at all.

Although, as a side note, I was irked that “Levi Quackenboss” used one of her pseudonyms to testify in front of a Colorado congressional hearing. Her testimony consisted of showing memes that Voices for Vaccines had made and making false and disparaging remarks about the organization and the Colorado VFV Parent Advisory Board member who was in attendance. She does seem to hide behind fake names to say horrible things.

A second aside, amazeball epidemiologist and awesome guy, Rene Najera points out this Picasso’s full name is Pablo Diego José Francisco de Paula Juan Nepomuceno María de los Remedios Cipriano de la Santísima Trinidad Ruiz y Picasso. So yeah. Marco didn’t use his full name.

“Levi” concludes her doxing piece against a child with this bit a conspiracy paranoia:

One thing is obvious, though: Marco isn’t just some random unknown kid when his parents have connections with the Mexican government and Walgreens is on standby with a celebrity media company to sponsor his pro-vaccine video.

Yes, because children of lobbyists never make videos and don’t have opinions. And Walgreens and Ashton Kutcher are apparently in on the conspiracy–along with the Mexican government–to cover up the vaccine-autism connection championed by such savory characters as Andrew Wakefield. People who believe this are really the same sorts of people who believe that Tupac is still alive and that 9/11 was an inside job.

This entire affair brought to mind an experience I had with a viral blog post and doxing. In December 2013, my organization (Voices for Vaccines) published a piece by Amy Parker titled “Growing Up Unvaccinated.” I actually hadn’t realized it was going viral until our website crashed and I was unable to access my email. Like Marco’s simple and marvelous piece, Amy Parker’s struck a nerve both among pro- and anti-vaxxers.

And the anti-vaxxers immediately pounce in some of the most despicable and horrible ways possible. They began by taking to Google and discovered someone named Amy Parker Fiebekorn who worked at the CDC. They immediately decided that because Amy Parker is such an unusual name that this CDC Amy Parker, and not the one from the UK whose actual biography we gave, was the true author of “Growing Up Unvaccinated.” You know–because if we went to the trouble of tricking people by secretly publishing a piece by someone at the CDC, we wouldn’t bother changing her name. This myth persists to the day and will pop up if you Google “Growing Up Unvaccinated Fake.”

Others were not satisfied and decided that perhaps Amy Parker didn’t work at the CDC. So they tracked her down. They found her profile and her mother’s Facebook profile. Some sent PMs. They found Amy’s cell phone number, and some began texting her. They found a video where she discusses her struggles with mental health issues and posted it publicly, as if to shame her with the stigma of mental illness. In one forum, one woman (who, by the way, makes a living teaching online classes about the dangers of vaccines), discussed paying her a visit:

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Amy Parker (the real one) had to shut down her Facebook page and take down her business page (which included her phone number). To make matters worse, the doxing and harassment came as she welcomed a new baby into her family.

Doxing has real consequences, and an adult shouldn’t have to deal with those consequences, but a child really, really should not have to. The doxing of Marco Arturo is despicable and has to stop now.

All this because a child made a satirical video. Grow up, anti-vaxxers. If you disagree with him, discuss your disagreement. Don’t disparage and harass a child.

*ETA: The doxing included in the Quackenboss post included the names of his stepfather and his mother and some employment information regarding his stepfather. A screenshot of the stepfather’s Facebook page included the name of their hometown. This information not only makes it easy to harass Marco and his family, but collating together could incite that harassment. 

Why doesn’t Age of Autism like me?

Everyone is talking about the movie produced by, funded by, directed by, and starring Andrew Wakefield. And while Andrew Wakefield doesn’t need anyone’s help with promotion (he is the master of self-promotion), we all became enraged when Robert De Niro used his non-existent medical degree to almost every media outlet in the country in order to say that maybe the film has a point that maybe vaccines cause autism.

I mean, science? Pfffft. Who wants to listen to science when the actor whom I confuse almost always with Al Pacino says that he wants studies done and people to look into. (Apparently, while I was busy confusing De Niro with Pacino, he was busy reading absolutely none of the 107 studies that show that SERIOUSLY VACCINES DON’T CAUSE AUTISM.) But whatever. Today show and stuff.

And actually, that’s where I’d like to begin my tale. For me, it wasn’t just De Niro needing to put a sock in that nonsense that had me going bananas. It was also an NBC interview with Autism Speaks’ Bob Wright and former NBC guy Tom Brokaw on the radio, both spouting nonsense about vaccine injuries and autism and whateverwhoneedsfacts.

So I tweeted this:

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And thus, I drew the ire of anti-vaccine, biomeddling conspiracy site Age of Autism once again, as you can see with this snippet from their most recent post:

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No response? That is really unfair, because Wayne Rohde (the author of the above piece), and I had an exchange which ended in him inviting me to the movies. And so I left a comment:

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But I have little faith that this will all turn out with mutual understanding and mended fences. I guess I’ll have to go see a different movie in June. I’ve been waiting to see Me Before You.

 

Is NVIC Anti-Vaccine?

Of course it is.

For those of you who do not know who NVIC (National Vaccine Information Center) is, I submit to you this simple and accurate definition by Michael Specter:

[A]n organization that, based on its name, certainly sounds like a federal agency. Actually, it’s just the opposite: the NVIC is the most powerful anti-vaccine organization in America, and its relationship with the U.S. government consists almost entirely of opposing federal efforts aimed at vaccinating children.

Of course, this is not how NVIC defines themselves. In an interview with NVIC president Barbara Loe Fisher, the author noted:

NVIC is not “anti-vaccine,” as mainstream news media might encourage the public to believe. Rather, it is pro-safe vaccines and exists to ensure the informed consent of the parents and patients who chose to vaccinate.

Of course, an organization that frames itself as being “pro-safe vaccines” should be able to answer what it would take to make a vaccine safe. In fact, one anti-vaccine parent DID ask NVIC what makes a vaccine safe, and received the clearest and most revealing response possible from NVIC’s New Hampshire State Director of Advocacy, Laura Condon:

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“Nothing can make a vaccine safe,” according to Laura Condon, speaking on behalf of Barbara Loe Fisher and NVIC. The assertion that it is impossible for vaccines to be safe is stunning, and it brings what is meant by “pro-safe vaccines” into focus.

Let’s keep this in mind the next time NVIC claims that they are for “informed consent” (meaning filling people with nonsense about how vaccines are never safe) and that they are “pro-safe vaccines” (even though they believe such thing is an impossibility. What they really want is for you to be scared witless about vaccines, to refuse vaccines, and to demand that it is as easy as possible to refuse vaccines without consequences (except, of course, leaving your children at risk for terrible diseases).

If you are for only safe vaccines, but safe vaccines are impossible, you are, by definition, against all vaccines. What is the name for someone who is against all vaccines? Oh yes, right. Anti-vaccine.