Vaccine refusal: it ain’t nothing new

imgres-1I’ve been fascinated by vaccine refusal for a long time, but for whatever reason I had never thought much about its history–at least not stretching back more than a few decades.

Perhaps it shouldn’t be surprising, but turns out that powerful anti-vaccine sentiment has been around for a long time! I just finished Pox: An American History by Michael Willrich, which explores the anti-smallpox vaccine movement during the last major epidemic in the US. Around the year 1900, smallpox emerged from the American South, where it had been festering, and started rampaging across the country, sparking epidemics in major cities like New York and Boston.

Desperate public health officials imposed mandatory vaccine drives. When people didn’t want to be vaccinated–and a lot didn’t–they risked being fined, thrown in jail, or physically restrained while somebody gave them the vaccination. Of course, vaccination laws were applied very differently depending on whether someone was wealthy or poor. In New York’s tenements, brute squads literally chased down and vaccinated every person they could find, breaking down doors and tearing children out of the arms of their mothers. The same was not true on Park Avenue.

All kinds of people joined anti-vaccine societies around the country. Celebrities weighed in too, although at that time people like Mark Twain and Williams James were voicing anti-vaccine sentiments. A little different from today, when anti-vaccine stars tend to be people like Jenny McCarthy and  Jim Carrey. It’s also striking how little the reasons for vaccine refusal have changed in 100+ years. Parents then were primarily concerned about their children’s safety. They cited all sorts of cases in which vaccines had been followed by death or terrible illness. Many believed that it was better to risk smallpox (especially in its milder variola minor form) than to receive the vaccine.

Of course then they had a point. People had very real reasons to worry about vaccine safety. Although local governments could compel people to be vaccinated, they could not guarantee the safety of the vaccines being administered. In the early days, when people were vaccinated with material from the lesions of another vaccinated person, the risk of some unwanted pathogen being transmitted alongside the vaccine virus was significant. In a particularly awful example from 19th century Italy, 63 children were vaccinated with infectious material taken from an infant who appeared to be healthy. Forty-four of those kids developed syphilis. Some also infected their mothers and nurses. And keep in mind this was before we had antibiotics–when syphilis often proved a death sentence.

Later, cows were used to produce the smallpox vaccine, which really helped ramp up production. It also meant that anyone with a cow and access to some virus could join the vaccine business–small, filthy operations were literally operating out of backyards in places like Brooklyn. There simply was no quality control or regulation.

Not surprisingly, vaccines at that time were often horribly contaminated. The vaccine site often became infected. A man or woman might lose days or weeks of work due to their inability to use the vaccinated arm–and the family that depended on them would suffer. That was sort of a best-case scenario, though. A number of children died of tetanus or other infections after vaccination. You can imagine how that stoked fear of the vaccine! It also horrified many of the doctors who unwittingly administered tainted vaccines and saw their patients suffer the results. Eventually, the attention these cases drew to the lack of quality control in vaccine production would revolutionize the way vaccines were produced, and quality control would become one of the industry’s major concerns. The government would also eventually recognize that it had a responsibility to regulate vaccine production and care for people harmed by vaccines.

The book also draws attention to a major divide in the medical community that was emerging at the time. Homeopaths and other alternative medicine practitioners were very active in the anti-vaccine movement. At the same time, allopaths were coming out strong in favor of vaccination and consolidating their hold over the medical profession. This is another source of tension that seems to have changed very little during the last century.

Willrich gives a sympathetic portrayal of the very real conflicts posed by mandatory vaccination as he follows the outcomes of court cases challenging mandatory vaccination laws. What are the rights of the individual weighed against the many? Especially when the risk of bodily harm to the individual is real? It’s interesting that a lot of passionate vaccine critics then were also active in the women’s rights and civil rights movements of the day. He makes a good case that society’s struggles with vaccine refusal have helped shape our understanding of civil rights. It’s a fascinating book, definitely worth a read!

The bogus HPV vaccine article that just won’t die

vaccinationI came across this article on Facebook today: Lead Developer of HPV Vaccines Comes Clean, Warns Parents & Young Girls It’s All A Giant Scam. It was published on some entertainment website called feelguide.com back in July, but it just won’t die. It’s got 198,000 Facebook likes, and it’s been tweeted 631 times. It claims that Diane Harper, a scientist involved in the clinical trials for Gardasil, one of the HPV vaccines, did a 180 and decided that the vaccine is no good. According to the article, she announced this abrupt change of face at the 4th International “Converence” on Vaccination in Reston, Virginia. She came clean to the audience so she “could sleep at night.”

The article conveniently makes it very difficult to distinguish between the (supposed) paraphrasing of what Harper actually said at that meeting and the interpolations of other people. It says scary things like “44 girls are officially known to have died from [HPV] vaccines.” Uh, really? Wouldn’t that death toll be all over the newspapers? Well, maybe not, since it’s not at all true.

You might wonder how this website can get away with printing things that are demonstrably false. Yesterday somebody pointed out to me the feelguide.com website’s disclaimer: “Feelguide.com contains published articles, speculation, assumptions, opinions as well as factual information. Information on this site may or may not be true and is not meant to be taken as fact.” And the author? Is he a vaccine expert? Nope, his name is Brent Lambert. As it happens, he is also Editor-In-Chief of this fabulous website, and you can reach him at his gmail address. Super professional.

Where did this article come from, you ask? Almost word for word, it was taken from an article that appeared on the website LifeWise in June. This article, in turn, seems to have drawn on a 2009 article in the Sunday Express by Lucy Johnston. (Note: The Sunday Express may sound respectable, but it’s actually a British tabloid.)  Their claims that Diane Harper said all this stuff were debunked back in 2009, the very week that they came out. Ben Goldacre of the Guardian talked to Diane Harper himself. In Harper’s words:

“I did not say that Cervarix was as deadly as cervical cancer. I did not say that Cervarix could be riskier or more deadly than cervical cancer. I did not say that Cervarix was controversial, I stated that Cervarix is not a ‘controversial drug’. I did not ‘hit out’ – I was contacted by the press for facts. And this was not an exclusive interview.”

The original article was promptly taken off the Sunday Express website, and Harper complained to the Press Complaints Commission.

How did this whole brouhaha start? For whatever reason, Harper decided to speak at the 4th International Public Conference on Vaccination, held by the National Vaccine Information Center in Reston Virginia. Sounds bland enough, right? But as it happens, the NVIC is one of the largest, most vocal anti-vaccine groups out there. Why would she attend such an event? I guess it’s possible that she was tricked, that she didn’t realize what she was getting into. Working in the vaccine field, it seems she would have to be familiar with the NVIC, though. Maybe she was trying to engage vaccine critics, hoping that a little education would bring them around. Perhaps we’ll never know. But not surprisingly, it appears that attendees twisted her words in the press.

So how did all the same 2009 tabloid junk get recycled in a 2013 article? And why do people take it at face value? Lord only knows.

I frequently see people post articles like this in places like Facebook after adding something like, “C’mon, people. Do your research. Vaccines are dangerous.” I am all for people doing research about vaccines. There is so much great vaccine research available that if most vaccine skeptics really delved into it, I think they would rapidly change their minds. But does anyone really consider reading an article like this research? Even if the lack of any citations didn’t clue you in, and you didn’t know about the backstory for this chunk of lies, wouldn’t the misspelled words, the disclaimer that says the website contains  information that “may or may not be true,” and the Editor-in-Chief’s gmail address give you reason to pause? Is this really where you want to get the information you use to make medical decisions? Feelguide.com? C’mon people. Do your research. For real.

If you’re interested, more information about this particular zombie anti-vaccine meme can be found on the Respectful Insolence and Skeptical Raptor blogs.

Vaccines and Autism: A crisis of legitimacy?

photo-injectionWhat do you do when you are part of a movement, you pour your heart and soul into it, and then things start to fall apart? Like members of a religious cult the day after the world doesn’t end, eventually you have to move on. But it must be really tough. In the same way, it seems to many of us as though the vaccines-cause-autism groups are going to have to grapple with the hard truth soon. But are we silly to think that?

Years ago, organizations like the National Vaccine Information Center and SafeMinds put forth a hypothesis: that vaccines cause autism. They called for the research community to test it. Now, study after study after study after study after study after study has come out debunking any link between vaccines and autism. One of the biggest leaders in the anti-vaccine movement, Andrew Wakefield, has been disbarred and disgraced, having kicked the whole debacle off with a fraudulent scientific article in a high profile journal. Other medical experts who have lent support to anti-vaccine groups, like Dr. Mark Geier and his son David Geier,  have met similar fates. Not surprisingly, given the mountain of evidence against a link between vaccines and autism, the access of anti-vaccine groups to policy makers appears to be waning. And in the wake of falling vaccination rates, large measles epidemics have broken out in places like Swansea, demonstrating just why vaccines are so important. So what happens now? Will the members of anti-vaccine groups start to drift away? Or will the leadership abandon the vaccine-autism hypothesis and find something else to concentrate on, remain relevant somehow?

Last year, a really interesting article on exactly this question came out. It’s called The Legitimacy of Vaccine Critics: What is Left After the Autism Hypothesis? and it appeared in Journal of Health Politics, Policy and Law. The author, Anna Kirkland, wanted to know how NVIC and its supporters were responding to all of these blows to the organization’s legitimacy. Her focus was on the leadership. Why would they continue to hang on to the vaccine-autism hypothesis when it meant losing the respect of the research and policy-making worlds? Kirkland attended the 2009 NVIC meeting and gathered data about who was there and what they believed.

Activist parents turned out in a big way, of course. Parents started groups like NVIC and have  kept them going. A specialized group of health professionals and researchers were also in attendance. Some of the health providers practiced alternative medicine; others practiced traditional western medicine, but opposed state-mandated vaccinations on libertarian grounds. You might be wondering what kind of researchers were there. Apparently, they typically publish in non-peer reviewed journals, occupying a sort of shadow research-world. Nevertheless, NVIC members feel these health professionals and researchers lend credibility to the group. Donors, of course, were important attendees. NVIC donors come from the left and the right side of the political world, and many are big movers and shakers in the world of political fundraising. Finally, there was the media. Mothering magazine and the Huffington Post are apparently two sympathetic news sources for parents who choose not to vaccinate their kids. Kirkland argues that all of these constituents have joined together to create a world of internal legitimacy. The NVIC leadership needn’t change course (and in fact, it would have a very difficult time doing so), because its constituents still believe they’re on the right track. What many of us view as major setbacks to the vaccine-autism hypothesis haven’t phased the members. Want an example? Check out the part of the SafeMinds website that deals with Vaccines and Autism. It’s as if the authors are not privy to any of the recent research–or with what scientific studies can and cannot show.

I’m convinced that it’s probably hopeless to try and change the minds of hard-core vaccine critics with data. But it seems as though many new parents are probably on the fence about vaccinating. They want to do what is best for their children, and they’re not sure what that is. They try to do due diligence and research their options. Have all the studies debunking the vaccine-autism connection affected THEIR views? Apparently, as recently as a few years ago one in four Americans believed that vaccines cause autism. And between 2003 and 2008, the percentage of parents who refused or delayed vaccines for their small children rose from 22% to 39%. So I’m not getting the feeling that the results of these studies are having the effect that we’d like. What we think of as blows to the vaccine-autism hypothesis are not finding purchase in the general public.

Have all these setbacks had any effect on the popularity of vaccine critic groups? Since NVIC and SafeMinds are nonprofits, I tried to find their annual reports. In the world of Public Health, it’s usually very easy to find an organization’s annual reports, stretching back for years. Not so for these groups. I was able to find a 2011 annual report for NVIC, but that’s all. I looked up both groups on GuideStar, which collects information about non-profits’ financials, and found a little more information there. It turns out that the loss of external legitimacy (i.e. the evaporation of respect from the research community and from the health policy world) doesn’t seem to be hurting these groups financially. In 2011, NVIC raised over $800,000–more than twice what it raised in 2009.  SafeMinds has also raised more and more money in recent years. Fundraising might not be the best measure of support for these groups, since a few big donors could contribute large amounts and mask trends in rank and file membership. But NVIC reported that in 2011, 1 million people viewed their homepage. It doesn’t seem like they are hurting for supporters.

gradusatodayAs a scientist, reading about the inner workings of the vaccine criticism movement was pretty sobering. A lot of researchers have diligently carried out research on vaccines and autism, laboring under the delusion that their data will change people’s minds. Kirkland’s research (and the ongoing epidemics of preventable infectious diseases that are taking place in the U.S. and other high income countries) makes it clear that this isn’t likely to happen anytime soon. Many vaccine critics call for research into various vaccine-autism hypotheses, but they do not trust any mainstream biomedical researchers to perform the studies. If your study is funded by the NIH (as most of our studies are), your results are not going to be taken seriously by members of these groups. I think initially it made sense to investigate the vaccine-autism hypothesis. But at this point, wasting time and money demonstrating the same thing over and over again, in hopes of converting people who will never be convinced, doesn’t seem like a good use of resources.

It seems that just as the vaccine critic movement has lost legitimacy in the eyes of the research world, we researchers have lost legitimacy in the eyes of many parents, at least when it comes to the science and epidemiology of vaccines. Groups like Generation Rescue seem to be doing a better job at communicating with nervous parents (check out their PSA above). I hope that in the future, we can find a way to bridge these two camps in order to prevent additional unnecessary outbreaks of infections like measles and mumps.