Tuesday, May 19, 2015

Don't Call it "Research"

It has become standing advice in all camps—from pediatricians and public health officials to anti-vaccine mouthpieces and chiropractors: do your own “research” on vaccines and then come to a reasoned decision about whether you want to vaccinate your child. Imbedded in that directive is the suggestion that all parents have both the specialized education and critical thinking skills required to do biomedical research.

Of course that’s not what medical professionals are suggesting when they tell their patients to "research" vaccines. But they have acceded to the widespread misuse of the word “research” to describe web-based information gathering, and in doing so have tacitly agreed that Google searches, Facebook surfing, and reading the CDC’s website is equivalent to research. It’s not research. It’s reading. It’s information gathering, the way we gather information to build our family tree. It’s trying to making sense of complex scientific information the vast majority of us were not educated specifically to deconstruct. But it’s not research, at least not the way the term is used in medicine and science.

Part of the problem is the way the word has been loosely applied to any kind of information gathering—from genealogy to looking for the best esthetician in New York, we tend to refer to our efforts as “research.” And in some ways, perhaps, this term could be considered accurate in such contexts. After all, Merriam Webster defines research merely as a “careful and diligent search.” Most people would agree, however, that there’s a difference between a "careful and diligent" search for the best CSA and a "careful and diligent" internet search on whether vaccines are safe. That’s because scientifically valid information about vaccines is based on scientific research, which can be defined as the application of the scientific method to the investigations of natural phenomenon.

I believe it's time to change the language we use when we encourage parents to use available information to make a decision about whether to vaccinate their child. Let's take the word "research" out of the conversation and thereby avoid hinting that such information gathering is equivalent to the work done by vaccine researchers, biologists, and medical professionals.

I say this as a veteran “researcher” myself. I’m a parent of two children, and when my first was born, I was what is now termed “vaccine-hesitant.” I wasn’t fervently anti-vaccine, but I was scared. So I began reading about vaccines, and, like many new parents, I simply typed “vaccines” into Google. The first site that came up was the vaguely governmental-sounding National Vaccine Information Center. It described itself as a “clearinghouse” of vaccine information. The only thing that tipped me off to its anti-vaccine stance at first were the advertisements for Joseph Mercola’s alterna-empire. (Tanning beds, anyone?) Still, I deposited this late-night study into my “research file.” I spent hours upon hours reading until my eyes crossed. Deep down, I knew when I was in over my head, though I pretended to myself that I understood what I was reading when I began to gather research articles. Though the NIH helpfully links to any number of research papers on vaccines, they don't provide a translator.

Still, if anyone had ventured to tell me at that time that what I considered diligent research was not, in fact, research, I would have been offended. After all, I was good at it. I’d written a well-received book of narrative journalism that had required several years of archival research, interviews, even a Freedom of Information Act request resulting in reams of hydrological charts and paperwork, all of which I carefully studied. I had a Master’s degree from an Ivy League university. I was good at this.

It was only much later, when I went from vaccine-hesitant to vaccine advocacy, that I realized just how arrogant I’d been. And it all came down to this: I thought I knew more than my doctor. Or if I didn’t know as much as she did, I could catch up with a few weeks of serious "research." Her medical school education, her extensive reading, and her long clinical experience meant nothing to me if I could not come to the same conclusion about the safety and effectiveness of vaccines using what information I had at hand. 

Astonishingly, medical providers are enabling this point of view—for understandable reasons. One of the reasons parents were opting out of vaccines was because doctors were often not taking their concerns seriously. Part of this, I suspect, has to do with the fact that the science is so overwhelmingly clear that vaccines are beneficial to the human species. Vaccination became as foundational a part of childhood preventive medicine as a weight check or an eye test. Questioning the necessity of a footing may strike an engineer, for example, as bonkers. But a question about its safety should be heard. 

And too often it wasn’t. The result was more and more parents choosing not to vaccinate their children. Now the pendulum swings wide the other way, where many medical providers and public health officials fear that the only way to bring vaccine-hesitant parents back into the fold is to put their abilities to discern the safety and efficacy of vaccines on par with that of their providers. Hence, the gentle suggestion for parents to “do their own research.” But we are not on equal footing when it comes to science. That’s not how science works. We shouldn't blindly follow the recommendations of our medical providers--frankly, we shouldn't do that in any realm of our life. But at the same time, we need to understand our limitations. And in the vaccine conversations, few of us parents have acknowledged the fact that we might not know as much about vaccines as the people who study them.

In fact, we live in a society that grapples with basic scientific literacy. Take, for example, the fact that in a recent Pew Research study on Americans’ grasp on science and technology issues that fewer than half of Americans knew that an electron is smaller than an atom. More than 80% of Americans did not know that nitrogen made up most of our atmosphere.

The “highly educated” gambit doesn’t work when it comes to vaccines, either; if anything, it makes us, as parents, more susceptible to falling into the anti-vaccine camp because we overestimate our abilities to research. We think because we researched Ovid’s The Metamorphosis for our thesis that we can fully understand why a paper about the peripheral blood mononuclear cells of autistic children and whether the measles virus persists in them exonerates the MMR vaccine from any connection to autism.

So I want to propose something that in this day of conspiracy theories and artisinal, small-batch internet research, is radical: people with medical degrees know more about medicine than those of us who don’t have medical degrees. More, they know how to write research papers on immunology, vaccinology, or infectious diseases, and they know how to read and make sense of them. The vast majority of us do not. 

In this time of measles outbreaks and pertussis clusters, it's time for parents to practice a little humility and trust what we do know: vaccines are one of the most successful medical interventions in modern history, they save countless lives, most of them in the developing world, and they have a long and proven track record of safety. And the research on this is clear.

Monday, March 9, 2015

We Must Stand Up and Be Counted: Saving HB 393

We are in danger of seeing a commonsense change in Minnesota's immunization law go down without a fight, thanks to the anti-vaccine movement's attempts to derail it. HB 393 would add an education component to our existing personal belief exemption.

Though they present themselves to the legislators as champions of parental rights and "informed consent" these individuals do not want vaccine requirements of any kind on the books in Minnesota, or in any state. They have deluged the representatives with e-mails, and several representatives now believe their point of view represents that of parents and have "concerns" about the bill. Those of us who vaccinate--a whopping 9 out of 10--have stayed silent. We have let, and even after the measles outbreak, are continuing to allow the anti-vaccine fringe to speak for us. This must change. You may contact the following Minnesota legislators to ask them to holding a hearing on HB 393. Even if you live out of state, please consider e-mailing the representatives--the anti-vaccine movement has done so, with great success. Below you will find my letter and the names and e-mail addresses of the representatives who need to hear from you.

Rep. Tara Mack (chair): rep.tara.mack@house.mn
Rep. Roz Peterson (co-chair): rep.roz.peterson@house.mn
Rep. Jeff Backer: rep.jeff.backer@house.mn
Rep. Dave Baker: rep.dave.baker@house.mn
Rep. Matt Dean: rep.matt.dean@house.mn
Rep. Duane Quam: rep.duane.quam@house.mn
Rep. Joe Schomacker: rep.joe.schomacker@house.mn


Dear Representative X,

I am the parent of two young children who is writing to you today to urge you to give HB 393 a hearing in committee. I am part of the “silent majority” of parents who vaccinate their children on time, every time—and do so as a commonsense part of our family’s healthcare. In fact, well over 90% of us choose to vaccinate—that is 9 out of 10 parents who believe that vaccines are a valuable, in fact, essential tool to keeping our children and communities healthy. The reason we’ve been silent is because few of us ever imagined that we’d have to advocate for disease-free schools.

Like many new parents, I researched vaccines online before my children received their immunizations, and I was scared to my core by the “horror stories” I read about. At the time, I took these anecdotes at face value, a fact made even more embarrassing by the fact that I was an environmental investigative journalist for much of my twenties. In fact, I was being sold a bill of goods by individuals who have made it their aim to sow fear and doubt in the minds of parents in order to protect their own ability to keep their unvaccinated children in the schools and day cares with absolutely no trade-off whatsoever.

The measles outbreak of 2015 was, of course, an inevitable result of this fear and doubt spread by the anti-vaccine movement, which cleverly refers to its mission as “vaccine choice” or “parental choice,” or even “informed consent.” As a parent, it seems their choice to keep their children unvaccinated and at a higher risk of disease trumps my right to keep my own children safe from disease. In fact, their choices affected my own healthcare choices: During the measles outbreak of 2011, caused by unvaccinated children, I had to get my two-year-old toddler her MMR booster a full two years early. As a loving parent, I had no choice. The choice was made for me by the parents who did not vaccinate their children and yet were able to keep them in the schools and day cares of Minneapolis.

HB 393 is a bare-bones, commonsense change in the law that simply requires more education before a parent can simply choose not to vaccinate. It preserves a parent’s choice to refuse vaccines while giving parents who are simply hesitant—as I was—or who need more information the safety net of a meeting with a caring doctor. Those who don’t want to vaccinate, do not have to vaccinate. It’s curious that anti-vaccine activists, under the cloak of “parental choice,” could oppose a bill that preserves that choice. The truth is, this movement wants no laws on the books that require vaccines.

Of course, the bill does not address my concerns about leaving my children and the other children in my life whom I love in a school setting with unvaccinated children. But it’s a start. Not giving it a hearing would be elevating the vocal minority that is mischaracterizing this discussion as an attack on “parental rights” while denigrating the more than 90% of us who vaccinate, and disregarding the rights of infants, the children going through chemo, and other vulnerable people in our community.

I wish those of us who vaccinate were more vocal—we are well aware that the small anti-vaccine community has mobilized and enlisted people across the country to e-mail you and your colleagues with their objections. However, those of us who vaccinate our children face a dilemma—to us, vaccinating our children is one of the most important healthcare decisions we make, but it’s also so commonsense that we never thought we’d have to join a movement called the “pro-vaccine” movement. Please don’t mistake the many emails you’re getting from anti-vaccine voices for the true feelings of parents across this state. Our statistics speak for themselves.

Thank you,

Ashley Shelby 

Tuesday, March 3, 2015

The Loss of a Champion: Laura Scott

By Karen Ernst

Laura Scott was the giant of public health you never heard of. She combined intelligence and generosity of spirit in a way that inspired trust. Because she was so good and so smart, when the sister of a teacher at my sons’ school succumbed to flu, I wanted to connect the family to Laura and to Families Fighting Flu. Laura gladly and quickly sent her business card and some materials for the family. I never even knew she was suffering through breast cancer.

Yesterday, when that breast cancer took Laura, we all lost something many never knew they had. We lost the champion of school-based flu clinics. We lost the champion of families who had been touched by influenza. We lost the mom who talked to college students about the need to take charge of their health by getting vaccinated against the flu.

Personally, I lost my flu vaccine mentor. The first time I spoke with Laura, we chatted about Jenny McCarthy’s gig on The View. And we talked about how we could inspire school children to get their flu vaccines through fun raffles. Over the years, I have appreciated her insight and advice as I worked to gain my footing with Voices for Vaccines. For many people in the vaccine world, Laura is a voice of reason and a sharp, thoughtful collaborator and colleague. She will be greatly missed.

You have perhaps never heard of Laura Scott, but you have been touched by her work. Please take a moment to honor her memory and her good work by donating in her memory to one of the two organizations about which she felt passionate:

Thursday, January 15, 2015

Dear Vaccine-Refusing Parents

By Karen Ernst

Dear Vaccine Refusing Parents,

I get it. Vaccine Advocates like me have put a lot of pressure on you. Refusing to vaccinate your child is not as popular as it used to be, and some of your peers consider you a pariah, fearing that your children will make them sick. So you’ve gone underground.

You’ve been encouraged to go underground by charlatans, like the anti-vaccine Dr. Bob Sears, who uses fear of vaccines to promote his brand. In his book, he told you not to share with your neighbors the fact that you have left your children vulnerable to disease, and to “hide in the herd.” He probably didn’t bank on the fact that the herd would thin out and your choices would leave us all vulnerable. He sold you two lies: one–that you should be afraid of vaccines, and two–that disease would never visit your children.

So you’ve decided to lie about not vaccinating your children. You’ve told ER doctors that your children are up-to-date on immunizations. You’ve told nurses that your children have allergies that they do not have so that you could avoid vaccinating. And you’ve rationalized it all with the falsehood that if your child ever did become ill, you would keep her at home and not expose others.

But your children, as they’ve grown, have not learned that last part. They have only learned, as you have stated time and again, that they only need to be concerned about their own well being and that they don’t owe anyone the truth or anything else.

It turns out that one of you brought your unvaccinated children to Disneyland while they were contagious with the measles. Because measles is so infectious–90% of those not immune can catch measles from a space where a contagious person had been for up to two hours after he leaves–other unvaccinated people caught it.

One woman went home to Pasadena and visited her unvaccinated sister, who is now refusing to be quarantined. Her mother defended her, saying "It's not nice when my daughter is threatened like this because she's not even sick.”

Of course she can pass along measles before becoming ill with it. Chances are she will. But you’ve been lied to. Someone told you that your children were special and they couldn’t get measles. Someone told you that your children were owed more than children like Ben, who had to be quarantined after a potential measles exposure because his chemotherapy had wiped out all his immunity to the disease.

Someone told you it was okay to lie and to hide from the consequences of your decision not to vaccinate. And now it is time for you to own the truth. Are your children unvaccinated? Be honest about it so ER doctors can treat them appropriately, so schools can exclude them during outbreaks (for their own protection), so your neighbors will know not to visit you and catch diseases we can easily and safely prevent.

I know I’ve been tough on you, and that you disagree with me and all the science showing vaccines are safe. But you still need to have some honesty about your vaccine refusal so that we have some choices about how to protect our children best.