Engaging on Social Media about HPV

Managing several social media accounts for Voices for Vaccines, I am well aware that when we post something about HPV vaccines, I’d better have my Girl Scout cookies ready for some lengthy moderating of our accounts. HPV vaccine posts on social media get a lot of attention, especially the “I vaccinate but not with this one” type of comments.

Hesitancy specific to HPV vaccines has many causes, but one of the primary causes is that anti-vaxxers are especially adept at using social media to sow fear, uncertainty, and doubt (FUD) about HPV vaccines in particular. A photo of a beautiful (usually white) girl and a title such as “The Decision We Will Always Regret,” and you’ve got hosts of parents asking their doctors to hold off on just this one vaccine–as well as doctors fearing the conversations about it.

The mess, of course, is bigger than that, but the social media aspect of it, now that’s something we can do something about. I believe so strongly that pro-vaccine advocates can reclaim the social media HPV vaccine story that I wrote about it in the recent Academic Pediatrics supplement in my article, “Social Media in the Exam Room: Stories of Human Papillomavirus Disease and Prevention”

In this article, (and quoting myself is admittedly awkward) I argue:

Although it might seem time-consuming to engage in these kinds of discussions on social media, sharing content about HPV cancer stories primes the exam room discussion about HPV vaccines in a positive manner. The exam room needs doctors, nurses, patients, and parents to create online content about their experiences with HPV cancer and the need for protection from HPV vaccines. In addition, social media is begging for more scientifically savvy users to start discussions about these stories by sharing them and wading into existing conversations.

Here’s a little call-to-action: Find some great HPV cancer content and share it in your personal and professional (where appropriate) social media spaces. Just place it there, and then get some Girl Scout cookies and engage whoever appears.

Here’s a brief list of some great HPV cancer content:

• Someone You Love and Lady Ganga
• SupermanHPV
• Voices for Vaccines’ HPV blog posts
• Shot By Shot videos on HPV

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:

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.

Myths of the Minnesota Measles Outbreak

As of Friday last week, 68 people had been sickened by measles in the state of Minnesota since April 11. To put that in perspective, that’s more than had been sickened by measles in Minnesota from 1997-2016. Because of its significance, the Minnesota measles outbreak has received significant attention across the country. It has also been the source of continued anti-vaccine misinformation–possibly as an effort to downplay their own culpability in its spread. I’d like to go through some of that misinformation to clear things up.

The outbreak was caused by vaccine shedding.

Nope, nope, and nope. The virus being spread, per the Minnesota Department of Health, is the B3 genotype, one known by the World Health Organization to be circulating. The virus used in the vaccine is an A genotype.

The vaccine doesn’t cover the strain circulating in Minnesota.

Yes, this myth is a rebuttal used when the anti-vaxxers learn that the vaccine isn’t causing the outbreak. Everyone must be getting sick because the vaccine is useless. Nevermind that over 8,000 people have been exposed, and of the 68 people sickened, 64 were unvaccinated.

The truth about the vaccine is that while there are multiple genotypes of measles (think of the genotype os the spaghetti-looking stuff inside the measles virus, measles has only one serotype (think of the serotype is the knobby parts on the outside of the virus that). The vaccine is made to train antibodies to latch on to the surface of the virus–the knobby serotype–and to kill it. The vaccine works. It works remarkably well when you consider the over 8,000 Minnesotans who are not sick.

Here’s a photo from Vaccine Nation to clear the whole thing up (click to embiggen):

Measles is a Somali problem

Again, untrue. Measles doesn’t care where you were born. And, in fact, the people getting sick from measles are those born in the United States. They are Americans. Measles only cares if you are vulnerable–it is an unvaccinated person problem.

Measles is not in Minnesota because of refugees or immigration. You cannot use this outbreak as another feather in your xenophobia hat. Measles is in Minnesota because people were not vaccinated for it–pure and simple. The index case for the outbreak has not been identified, so it could have been someone traveling through the airport or to the Mall of America. It could have been someone coming home from a wild Romanian vacation. But people who travel to the United States to live and work are required to be immunized.

Somali parents are against vaccines

I hesitate to speak for any other parent about how they feel about vaccines, so I want to point out this interview with Anab Gulaid, a Somali-American researcher in Minnesota, who says, “Somali parents are not anti-vaccine. They are not the ones out there convincing other parents not to vaccinate.” Furthermore, state data seems to indicate that some Somali parents simply delay the MMR vaccine out of fear, while some get the vaccine on time. Representative Ilhan Omar, an important state and Somali community leader, states in this interview that her children “certainly are” immunized.

Minnesota’s anti-vaccine leaders only responded to Somali parent concerns

One of the starkest risk factors for vaccine hesitancy anywhere is in the vacuum of support parents of autistic children find themselves. Parents whose children receive a diagnosis are often left to navigate through the confusing world of special education, therapies, and insurance–not to mention a family life more complicated than they had expected. The anti-vaccine movement had an opening there, and they took it.

But they also persisted. During the outbreak, they have held meetings in predominantly Somali-Minnesotan neighborhoods, are currently translating the fraudumentary Vaxxed into Somali, and have attended Minnesota Department of Health community meetings to pass pamphlets out to Somali parents.

That’s not all. They are also looking to gain power within Minnesota by writing themselves into legislation. Before the outbreak began, they filed a bill in the Minnesota House that would have given their group, the Vaccine Safety Council of Minnesota, the power to oversee a statewide database of post-vaccine adverse events. (Yes, you read that correctly. They would have had oversight into medical information.) And during the outbreak, they had the chutzpah to file a bill that would have directed the Commissioner of Health to conduct a study of vaccinated versus unvaccinated Somali people. (Note: there aren’t enough unvaccinated Somali-Minnesotans to conduct such a study.) It is as if they won’t stop until everyone is sick.

Measles isn’t a big deal

This myth infuriates me. Anti-vaxxers want you to think that you can give your child megadoses of vitamin A and vitamin C, and that they will be just fine with measles. (In another racist turn on this myth, they claim that because a vitamin A deficiency is a cause of measles mortality in Africa, the fact that Somali children had parents who once lived in Africa puts them at special risk. As though these children do not have access to nutrition in the famine-stricken land known as Minneapolis.)

Measles is a big deal. A quarter of the children in this outbreak have been hospitalized. (And no, random internet person who argued with me last week, the term hospitalized doesn’t mean that they just walked into the hospital.)

What is it like being in the hospital with a child who has measles? This mother explains how her daughter’s illness changed her perspective on measles:

Soon after, the nurse put my daughter back in my arms, and then led us to where we would stay for the next few days. It was an isolation room, a small glass-enclosed space that held a crib, a television and a comfortable chair. Attached to the crib were bars to keep children from climbing out. The room reminded me of a zoo exhibit. The only thing missing was a sign saying, “Beware: human baby with measles.” In that moment, I couldn’t believe how my lack of awareness had led to such a frightening situation.

My child isn’t at risk for measles

If you think that because your child is vaccinated, you are probably correct. But if your child is unvaccinated, what magical powers do you believe you have to protect your child? Organic food can’t protect against an airborne virus. Being white and wealthy doesn’t mean anything to measles. Homeopathics and herbal supplements are no match for the most contagious virus on earth. You can either keep your child at home and away from everyone during an outbreak (and some are because their children might have been exposed at school or on the bus), or you can vaccinate. For my family, we vaccinated.

Oh, and by the way, the vaccine that protects against measles is safe.

I’m pro-vaccine, but that HPV vaccine…

Somewhere along the line, it became acceptable for parents who happily vaccinate their children against pertussis and measles and diphtheria and rotavirus to fear the HPV vaccine. Parents who shun the notion that the MMR causes autism or the the Tdap causes SIDS gobble up willingly blog posts about beautiful teenage girls who developed neurological problems or ovarian issues after the vaccine. That the websites they read are connected to the most notorious in the anti-vaccine world doesn’t register with these otherwise pro-vaccine parents. They are certain that this vaccine is not safe and that, while they can trust the CDC on every other vaccine, the HPV vaccine information has been obscured and sullied.

Parents fear vaccines for lots of reasons, and I’ve always held that fear of the HPV vaccine is one gateway into the anti-vaccine world. (Another prominent gateway is our birth culture, but that’s a different post.) Those pretty teenage girls had so much to hope for. And now their dreams are dashed–even if all evidence points away from the HPV vaccine.

I could go on about how safe this vaccine truly is, but I’ve done that before.

Instead, I’m going to insist today that parents who readily fall prey to misinformation about this vaccine do not understand what is at stake. I was fortunate enough to host a conference call last week featuring Dr. Nathan Boonstra on the topic of HPV vaccine uptake. While you should listen to the whole thing, I was most struck by what he said about the burden of HPV disease:

When we talk about the burden of this disease, I think it is underestimated by a lot of people…We are looking at 80 million Americans currently infected with HPV, 14 million new infections a year in the United States. And it’s most common in people in their teens and their early twenties…We are talking about 4,000 deaths from cervical cancer alone every year. We are talking about 12,000 cases of cervical cancer a year. And when we start looking beyond that, we are looking at something on the order of 25-26,000 cases of cancer in the United States from these [HPV] viruses. And then we can go even bigger and talk about the hundreds of thousands of cases of genital warts and hundreds of thousands of cases of precancerous lesions that have to be removed and that have their own set of complications and their own burden by bleeding or infection or even cervical incompetence…When we talk about males and females, a lot of people think we are trying to protect females. But when you really break down the numbers out of all of these 25,000 cases of cancer that are happening in the United States, a good third of them are in males…Most of these are your oropharyngeal cancers, which can be reduced by widespread use of the vaccine.

What Dr. Boonstra pointed out is that the burden of HPV disease actually outpaces some of the other diseases we vaccinate against. If we consider only cervical cancer deaths (even though HPV causes a number of cancers) and compare those to the deaths of other diseases, the harm caused by HPV disease is obvious:

• 4,000 HPV-related cervical cancer deaths in the U.S. today.
• 1,904 polio deaths in the U.S. in 1950 (near the height of the epidemic).
• 450 measles deaths every year in the U.S. before the vaccine.
• ~500 tetanus deaths each year before widespread use of the vaccine in the U.S.
• 100 chickenpox deaths every year in the U.S. before the vaccine.

And so on. You’ll notice that with the diseases we most fear for our children, we readily accept vaccinations. Except that HPV-related cancers kill more people every year than polio, measles, tetanus, and chickenpox combined did before we had vaccines for those diseases.

Parents who feel that they can let this vaccine hang or opt out of it because it doesn’t seem important are playing a dangerous game with their children’s health. HPV is a real threat, and preventing cancer when we can is an obligation. I would never say that one vaccine is more important than another, but the HPV vaccine is certainly crucial, even when it has the reputation of being optional.

While the burden of the disease may not hit their children until they are adults, the chance to protect their children happens when they are still children and parents have the obligations to make the choice to protect.

 

You Can Stop Vaccine Hesitancy

Yesterday, while waiting to get his baby’s vaccines at the doctor’s office, Mark Zuckerberg did the one thing we should all be doing to combat vaccine hesitancy:

And, no, I’m not suggesting you start your own social media empire. That’s not what you need to do.

You need to tell people that you are (or have been) vaccinating your children. You need to tell people publicly. Because if everyone who did vaccinate their children simply posted a photo like this on social media, the anti-vaccine movement would look like that tiny less-than-one-percent that they are instead of a loud, social media enterprise.

It’s called social norming, and it might be more effective than debating other people about vaccines and debunking their misinformation. A simple I VACCINATE statement, when made by everyone, shows just how ubiquitous this decision is, and also just how safe the decision to do so is. Imagine being a new parent and seeing photo after photo of friends saying “Time for vaccines!” on the internet (or heck–in person!). All those babies that you know who are vaccinated and are fine show just how safe immunizing can be.

Because I am so passionate about social norming, I am willing to insist that your duty speak up about vaccinating is just as important as your duty to vaccinate your children. If you truly want to protect your child and your community, it is your responsibility to help stem the tide of vaccine hesitancy. I bolded that because it is important.

In fact, there is evidence that your advice about vaccinating makes a difference. According to research by Dr. Emily Brunson out of Texas State University, “the variable most predictive of parents’ vaccination decisions was the percent of parents’ people networks recommending nonconformity” to the immunization schedule. In other words, the more people who recommend you not vaccinate on-time, the more likely you are not to vaccinate on time. Conversely, if everyone you know recommends you vaccinate on-time, you are unlikely to deviate from the vaccine schedule.

So get out there and tell your friends and family members and FarmVille collaborators that you vaccinate your children, end of story.

What Does the Latest Anti-Vaccine Failure Mean?

By now, it’s old news that the efforts to get a referendum on the ballot that would overturn the new California vaccine law have failed. The law, SB277, eliminates all non-medical exemptions to school entry vaccine requirements, so that students (without certain IEPs) must be homeschooled if they do not have all of California’s required vaccines.

Opponents to this bill were predictably upset when it passed, and they immediately launched an effort to try to get on this November’s ballot  a measure that would overturn SB277. In order for the anti-SB277 referendum to appear on the ballot, they needed 365,800 people to sign a petition asking for the referendum to be placed in front of voters. According to initial counts, they landed at least 100,000 signatures short.

To put  the petition drive into perspective, California has over 17 million registered voters and a population of 38 million people. As further perspective, a ballot measure that will appear in November in California would restrict how stores use plastic bags. In other words, out of 17 million people, less 2% of registered California voters were motivated to allow unvaccinated children unfettered access to public, private and charters schools. And more were motivated to vote about how the state regulates plastic shopping bags.

You would not have guessed that this would have been the outcome had you followed the legislative hearings surrounding SB277 this spring and early summer. After heated and passionate testimony at committee hearings on both sides, California allows the public to come forward and state their position about the bill to the committee. The lines for those supporting the bill were impressive. It’s not often that people stand publicly and offer their support for a bill.

But the anti-vaccine lines were long. They came to hearing after hearing after hearing, wearing their red shirts, and their lines wound around the building and into the hallways. Their statement of opposition took hours.

In the end, California had a legislative body that was motivated by measles outbreaks sparked in Disneyland and by a science-savvy state senator who knew how to explain vaccines to his colleagues.

And it turns out that the legislators in California were right not to be swayed by the many passionate voices opposing SB277. Because although they were loud, they were a tiny fraction of the voting population in the state–less than 2% of registered voters. And an even smaller percentage of actual California residents.

What does that mean? It would be tempted to declare that it means that we are right and they are losers and we win and they lose so go suck it, Trebek. It is tempting, but it’s wrong. It does not mean that we can be boastful and get our swagger on about a win in California.

It means that there are at least 300,000 people in California who have been scared witless by the lies of the anti-vaccine movement. Their fear makes them very loud, but they are still a tiny minority. It means that now is the time to reach out to them, to befriend them, and to reassure them that they can vaccinate their children and send them to school, and that the risk of something bad happening is very, very, very low.

It means that the death of the referendum efforts are not the end. If we consider it the end, we push the Red Shirts back into their lines and their gated groups and send them back to the echo chambers where they will hear nothing but lies and frightening rumors concerning immunizations. We ask vaccine hesitant parents to wall off their unvaccinated children with other unvaccinated children. And we risk creating new clusters of children who are vulnerable to outbreaks of diseases.

We aren’t done. Don’t pack up your belongings just yet. We have some real work to do.

Faux Pro-Vax Gambit

Anti-vaxxers do not like to be labeled as anti-vaccine. They see it as an ad hominem attack, though it is rarely meant to be. It is meant to describe what they are: against vaccines. As media attention moves away from legitimizing anti-vaccine sentiment and more toward exposing it as a threat to public health, anti-vaxxers have become more sensitive to being labeled as such.

Some have come up with their own labels. The favorites are “pro-vaccine safety” and “pro-choice.” The second is especially maddening because they want to have a choice over whether or not their children are protected against disease and a choice about whether or not their communities have high enough immunization levels to protect the most vulnerable. It is a choice born of privilege and of ignoring the needs of others.

Some simply dismiss it outright. Lucija Tomljenovic, a biochemist who has published papers promoting anti-vaccine myths, made this comment on a BMJ article:

I am NOT anti vaccine, I am anti bad science.
The reason so many dismiss even the possibility that vaccine can cause
damage is because they believe this to be true. This is religion and not
science.

Of course this is complete nonsense. People who promote the science behind vaccines do so because they have followed the science.

A prime example of the pro-science, pro-vaccine camp looking critically at the science is demonstrated in this article by Tara Haelle discussing a study that dubiously connected the Hib vaccine to leukemia protection:

I couldn’t find evidence of this dramatic reduction in government health statistics.

“I think this research is very interesting and thought-provoking, but I can’t connect the data they’re presenting to how Hib vaccine may reduce the risk of childhood leukemia.”

Dr. Martha Arellano

When I turned to outside experts, I discovered my confusion was justified.

I asked Dr. Walter Orenstein, associate director of the Emory Vaccine Center, if he could help or recommend others. He sent me to Dr. Art Reingold, head of epidemiology at the University of California, Berkeley, School of Public Health, and Dr. Martha Arellano, an oncologist specializing in leukemia at the Winship Cancer Institute of Emory University. Arellano also suggested I speak with Dr. Edmund Waller, an immunologist and oncologist also at Emory’s Winship Cancer Institute.

Every one of them conveyed the same message: Nothing in this paper proves that the Hib vaccine reduces leukemia risk, much less helps prevent ALL.

Tomljenovic is not alone in eschewing the anti-vaccine label despite evidence that she is. After all, even Dr. Bob says that he “gives vaccines every day,” even though he has aligned himself with the anti-vaccine forces in California.

But the most maddening are those who come right out and claim that they are pro-vaccine. It’s a gambit meant to disarm the other person in a conversations. It looks like this:

I am a pro-vaccine parent who strongly opposes SB 277.

My child, now 20, received all of her childhood vaccines, with my informed consent.

Her pediatrician and I decided together to delay the hepatitis B vaccine until puberty, because it addresses a disease that is spread via needles and sex, and she was at almost no risk of coming in contact with it.

The above quote demonstrates the crux of the argument. Basically, “I must be pro-vaccine because I vaccinated my children. Except for this one bad vaccine. I didn’t do that because [insert various anti-vaccine myths and follow with lots of conspiracy theories.]”

Basically, the Faux Pro-Vaccine Gambit is an introduction, a way of distracting you and throwing you off-balance so that when the anti-vaccine myths follow, you might not know what to do. But it’s possibly the worst gambit out there because the person using it has children who are protected against vaccine-preventable diseases to a degree, but wishes to cast fear, uncertainty, and doubt in order to encourage someone else to leave their children fully unprotected.

It’s the ultimate “I care about my children, and I really don’t give a damn about yours.” And it makes me furious.

It is really dangerous, though, when it is coupled with legislation. Advocates should be aware that people are contacting legislators claiming to be pro-vaccine and against legislation that aims to increase vaccination rates. They are liars, and they are muddying the waters.

So what can you do?

If you are online and encounter a faux-pro-vaxxer, ignore the fact that they claim to be pro-vaccine. Engaging in a discussion about immunization means debunking the misinformation, not taking apart the person. Anyone who promotes incorrect information needs to be corrected, especially in public, so that others are not misled by falsehoods.

If you are contacting a legislator, know that others are claiming to be pro-vaccine. If you are working closely with legislators on the matter, you might prepare them for this gambit. Be aware, however, that letting a legislators know that you are pro-vaccine probably does not mean much to them. Be prepared to use other labels for the anti-vaxxers with legislators such as “opponents to the bill” or “opponents to raising immunization rates.” Then, whether or not they vaccinated their children is an entirely moot point.

And know that whatever people claim, if they follow it up with anti-vaccine misinformation, they are not for vaccines. They are against them. In other words, they are simply anti-vaccine.

Is Vaccinating a Private Choice?

Last month, the Nursing program at Simmons College contacted me and asked me to respond to this question:

Would you consider vaccines to be a public health issue requiring that they are mandated by the government, or that the issue is a personal choice to be made within the home?

It took me a while to respond because I felt it was a bit of a false dichotomy. However, it is a fair question to ask, and writing a question that balances the idea of rights and responsibilities without making them seem opposed to each other is difficult. Fortunately, along with some other smart people, they did publish part of my answer.

Here is my full, un-edited response:

The primary reason we immunize a child is to protect that child against disease. The science supports the decision to immunize individual children, and vaccines that are not effective for individuals or pose a greater risk than a benefit for an individual are not licensed or are pulled from the market. Because the primary focus of immunization is the individual, it is, in a sense, a personal decision. And we hope that parents and patients make the right decision based on a consultation with their physician where the best medical evidence is used.

However, vaccines also have the intended consequence of community immunity. Immunization is a public health issue that affects not only the individual, but those around him or her who rely on other people vaccinating, either primarily–because he or she cannot be vaccinated–or secondarily–because even the vaccinated benefit from not being exposed to diseases. So vaccines are not a solely private decision. They are a decision that affect entire communities. So public health policy has to be crafted carefully in order to encourage that the best decision is made for the greatest number of people. What the best public health policy is varies from community to community based on many confounding factors.

The question is an intriguing one, and they included some other great answers, and one terrible response from Barbara Loe Fisher that was a rehashing of the word salad I dissected before.

The heart of the question, of course, gets at the nature of rights and responsibilities. Parents have certain rights, but they do not have unrestricted rights when it comes to their children, mostly because their children have rights as well. A child’s right to be healthy and to be protected against harm needs protection. Mostly, we rely on parents to make the correct choices. Usually, I am glad for this liberty because I do like to take my children to get ice cream and let them stay up late and other things that could be seen as potential threats to optimum health.

Disease is different than ice cream, of course, because preventing things like chickenpox, measles, and so forth yields health benefits orders of magnitude greater for a child than saying no to Dairy Queen might. It’s also different because my son’s banana split doesn’t affect the nutritional health of his classmates. Infectious disease is contagious. Brain freeze isn’t.

So parental rights and a child’s right to health are also weighed against community responsibility. Society doesn’t force a parent to vaccinate her child, but it can impose certain consequences for vaccine refusal–restricting access to school being the most severe. Schools, too, have the responsibility to keep students safe and promote good health. My kids can’t buy ice cream at lunch, and they shouldn’t be able to bring chickenpox into the building either.

Ideally, we would live in communities where everyone agrees to these principles and everyone accepts the science behind immunization. But we don’t live in an ideal world, so we each have to do our part to combat vaccine hesitancy.

Menses, Vaccines, and Slacktivism

Reading about the woman who ran an entire marathon menstruating without a tampon made me think of vaccine advocacy. I recognize it is an odd leap, but advocacy shares commonalities no matter the cause.

In case you missed it, People magazine reported that Kiran Gandhi ran a marathon in London last April while blood soaked her pants:

Gandhi let her blood flow freely to raise awareness about women who have no access to feminine products and to encourage women to not be embarrassed about their periods.

The value of what might seem like an odd stunt was debated all over social media. Some felt that it highlighted a real issue while others felt that it solved nothing and amounted to slacktivism. Slacktivism is a form of activism that requires very little effort on the part of the activist and often leads to no real involvement in the issue at hand.

Gandhi being accused of slackvitism hit me. Granted, I work day in and day out trying really, really hard to get people to engage their friends, neighbors, and school administrators in order to raise immunization rates in their communities. For all my work, I have found that people are most comfortable with far lesser forms of activism: sharing Jimmy Kimmel videos on Facebook, wearing a pro-vaccine t-shirt, or Tweeting at Jenny McCarthy. Are their efforts (and mine) worthwhile?

To answer that question, I really need to unpack what the cause is. Even though we bill ourselves as the pro-vaccine movement, we are really, at our heart, anti. We could see ourselves as anti-disease or as anti-vaccine hesitancy. In either instance, we are doing battle against things contagious that threaten public health.

If we are simply anti-disease, so-called slacktivism is not actually slacking off. The first course of action against preventable disease, after all, is to get your child (and yourself) vaccinated, since vaccines do battle against the diseases directly. The next step is simply to make vaccinating normal so that others will do it, too. Sharing that Jimmy Kimmel video certainly gives an air of “Normal people vaccinate” and might also remind people to check on their immunization status.

Vaccine hesitancy is a different monster, though. Jimmy Kimmel is not going to make a parent who has concerns about vaccines laugh those concerns away. As I wrote earlier, turning the tides of vaccine hesitancy requires people who care about the hesitant addressing concerns with them and sharing stories about why we vaccinate. This person-to-person, retail advocacy is the exact opposite of slacktivism. It is more akin to building a Habitat for Humanity house, except that no one will ever drive past the house and look at it because you cannot drive past outbreaks that never happened and note their lack of existence.

The pro-vaxxers who have vaccine hesitant friends whom they engage are the ones getting their hands dirty with activism. But they aren’t alone. The Washington Post reviewed a study on slacktivism and how to engage activists more deeply:

[T]hose whose initial act of support is done more privately (for example, writing to a member of Congress) are more likely to engage in deeper, more costly forms of engagement later on. Those whose initial support is public (i.e. through posting to Facebook or Twitter) are less likely to engage more deeply. Moreover, the researchers find that most appeals for token engagement “promote slacktivism among all but those highly connected to the cause.”

In other words, those who are engaging in pro-vaccine advocacy primarily through social media might be the people who appear to be the face of the pro-vaccine movement, but they may not be the ones moving the needle (pun intended) on vaccine advocacy. People who are writing legislators, engaging the media, talking to their school administrators, requesting pro-science books added to library collections, and a hundred other mundane, private tasks are pushing their neighbors to confront fears about vaccines in order to raise immunization rates. Their work is both anti-disease and anti-vaccine hesitancy.

Which is not to say that being pro-vaccine primarily on social media is inferior. Of course, there are ways that social media activism can effect real change concerning vaccine hesitancy and the grip the anti-vaccine movement has on Facebook and Twitter. For example, it was through social media that Chili’s was convinced to drop their support of an anti-vaccine organization. I’ve also used social media to prompt pro-vaxxers into private forms of advocacy, writing letters to congress and asking them to cancel a anti-vaccine hearing, for example.

Thus, being engaged in awareness raising does not preclude a person from making a real difference. However, the leap from sharing a funny pro-vaccine meme on Facebook to writing a company or a policymaker is wide, and often people engaging on social media are not ready to make that leap. My past personal experience has shown that in order for pro-vaxxers to take on get-your-hands-dirty activism, they have to be alerted to an immediate need that requires specific, short-term action (such as writing to have a hearing canceled or posting on Chili’s social media page). Between those actions, then, a little so-called slacktivism or awareness raising is necessary to keep people interested.

If you are waiting for me to rule on Kiran Gandhi, you may have waited in vain. While I don’t consider her cause one of those that drives me, I do donate feminine hygiene products to the local food shelf. And I hope that someone reading today’s post might write a letter to a school administrator and ask how the vaccine rates are and what might be done to raise them.

And why not. Here’s Jimmy Kimmel again.

No, There Isn’t a Simple Way to Get Anti-Vaccine Parents to Vaccinate

Everywhere you look, the media is telling you that you can scare anti-vaccine parents into vaccinating by showing them photos of sick kids and telling them stories about diseases. Article after article after article lately is telling us that we can win vaccine debate and change minds–simply! Why didn’t we all think of this before? (Seriously. Click that hyperlink.)

The buzz in the media is based on a new study published in PNAS looking at ways of countering anti-vaccine beliefs. The study looked at over 300 people with varying degrees of vaccine acceptance and hesitancy and presented them with one of three forms of vaccine information: a mother’s story about her child’s measles, facts debunking vaccine myths, or information about birds. The stories, it turns out, had the greatest effect on attitudes about vaccines. As Tara Haelle at Forbes points out:

So, presenting individuals with the dangers of not vaccinating, both in words and in images, seemed to help them think more positively about vaccines. In fact, the effect was most dramatic in those who had the lowest scores – the poorest attitudes toward vaccines – at the start.

Let’s be very clear that this study absolutely did not measure whether or not parents of unvaccinated children then went out to vaccinate their children. Their attitudes simply shifted because the risks associated with not vaccinating were reframed for them in a way that was both relatable and memorable. (In fact, I’m quoted in Haelle’s article saying that.)

I mention this limitation because I do not want pro-vaccine advocates to be lulled into thinking that the way to win debates or get people to vaccinate is to bombard them with pictures of sick kids and stories about suffering children. I can imagine social media arguments where anti-vaxxers make their same tired assertions only to be answered by a well-meaning pro-vaxxer who thinks she can solve it all by posting a photo of an ill child. I’ve been to the rodeo a few times, and while that might get some attention, we aren’t going to solve the issue of vaccine hesitancy that way.

In fact, I have witnessed in person that very technique not working. I was at a screening of the film Invisible Threat, which contains two stories of disease and its awful effects. Afterward, during the Q&A, one woman wanted to talk about how Vaccine Court proves that vaccines are unsafe. See how easy it is to set aside a story in favor of your own entrenched beliefs?

Do you know what actually makes people deconvert from the anti-vaccine movement? Other people who care about them.

I have spoken to and worked with and met many, many people who used to be anti-vaccine and many more who had some degree of fear about vaccines. Understanding the risk of disease through story was vital to them understanding why we prevent those diseases, but it wasn’t the end of their deconversion. Every one of these people I have met has had someone in their life–a doctor, a friend, a new acquaintance, a family member–who cares enough to keep a civil conversation going. And the conversation was not grounded in winning a debate. The conversation was grounded in a sincere and deep concern about protecting children.

So go ahead and tell your stories about your encounters with disease. They are critically important because they remind us that we don’t do all of this for nothing. But ground this conversation in kindness and goodwill, and plan on sticking around for a while. Telling the stories is just the first step. Showing we care enough to keep talking is crucial. And no, it’s not easy.