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.

Give on Giving Tuesday...to Give Pro-Vax Voices a Boost!

Our friends at Voices for Vaccines work tirelessly to make sure the anti-vaccine movement does not succeed in presenting itself as the default "parent voice" heard in any immunization conversation. VFV instead garners the power of the more than ninety percent of parents who choose to protect their children, and the community, by vaccinating. Because of the grassroots nature of the organization, and the fact that VFV does not accept any pharmaceutical funding, it relies entirely on individual donations from members and others supportive of the mission.

Tomorrow, December 2, VFV is asking for our help to turn up the volume on pro-vaccine voices by gathering 1,000 donors who are willing to give to VFV as part of their Giving Tuesday drive.

Moms Who Vax is happy to support Voices for Vaccines and to take these simple steps to help spread the word to 1,000 potential donors for tomorrow!


1. Join the Facebook event and invite friends.

2. Visit VFV on Giving Tuesday and donate any amount, great or small.

3. Share this video widely with friends, family, and colleagues:

"Consumer-Led Charity" Lobbying Your Legislator About Vaccines

Chances are this summer your state's congressmen and women received a letter from a "non-profit, consumer-led charity" urging them to take note of an "urgent need for reform."

That "charity" is National Vaccine Information Center. The "urgent need for reform" refers to state vaccine laws. 

For anyone unfamiliar with National Vaccine Information Center, it is the preeminent anti-vaccine organization in the United States, extremely well-funded by big donors such as Joseph Mercola. You may have seen their billboards in large cities across the country warning parents of the dangers of vaccines. The organization presents itself as a consumer advocacy group, and perhaps once upon a time it might have been. However, it has morphed, under the watch of Barbara Loe Fisher, into one of the most notorious anti-vaccine groups in the world, and it specializes in cloaking its true intentions with proclamations about "vaccine safety" and "personal choice," when its true mission is to make vaccination completely optional and to eliminate any state requirements making it harder for a parent to get her unvaccinated child into daycare, schools, afterschool programs, or any other public space where public health is of particular importance. 

One of the richer sentences from the letter NVIC sent congresspeople, and which I'm going to talk about briefly, is this one: "NVIC does not make vaccine use recommendations and supports the legal right for adults and parents of minor children to make informed vaccine choices." The latter half of this sentence is an exercise in redundancy, which, I suppose, they feel is worth spending millions of dollars on--informed consent is already assured and part of the medical experience of anyone seeking a vaccine. The first half is a falsehood. ThinkTwice Global Vaccine Institute, which advises against vaccination, lists NVIC as a trusted source of information.  Fisher's own blog betrays her true feelings about vaccines, bearing the motto: "If the State can tag, track down and force citizens against their will to be injected with biologicals of unknown toxicity today, there will be no limit on which individual freedoms the State can take away in the name of the greater good tomorrow."

And whenever states begin considering strengthening immunization rules, NVIC is right there, making a stink, usually in the name of "personal rights" and "informed consent."In fact, that kind of opposition to better immunization rules on a state level is a core purpose of the organization. Think about that for a minute: this is an organization that devotes its time and considerable capital to making it easier for unvaccinated children to mingle with the public in public spaces, such as schools and daycares.

I bring this up because over the summer, National Vaccine Information Center sent letters and a slickly produced "book" to congressmen and women in Washington, which NVIC termed a "legislative guide." That guide was titled "Reforming Vaccine Policy & Law." That guidebook indicates to the legislators who receive it that there is an "urgent need for reform of existing state vaccine laws." Translated, this means that NVIC feels that immunization requirements for children entering school, day cares, and for health professionals caring for the elderly and immunosupressed or immunocompromised (such as children with heart defects, anyone going through chemo, etc) are unacceptable. This, even though the vast majority of states have either a religious, medical, or conscientious objection clause in their rules. 

Personally, I find NVIC's hubris (or perhaps cluelessness?) fascinating: to launch a campaign to weaken immunization rules at a time when the country is grappling with outbreaks of vaccine-preventable diseases, such as measles, mumps, and pertussis. There's no sign that the effort has worked, but the onus is on those of us who care about public health to make sure our legislators are informed about the true intentions of this "consumer-led charity" that warns of an impending crisis of personal liberty (i.e. the closing of certain personal exemption loopholes in some state immunization rules). It would take but a moment to write a quick e-mail to your local representative and senator just to say, hey, you may have received a letter and legislative guide this summer from a group purporting to be an "independent clearinghouse for information on infectious diseases and the science, policy, law, and ethics of vaccination" (a line straight out of NVIC's letter). However, I would like to clarify for you the organization's true position. A simple search of NVIC online or even on this blog will reveal countless examples of NVIC's attempts to dissuade parents from vaccinating. 

While I feel confident legislators grappling with immigration reform, budget issues, and the war on terror are probably not inclined to give NVIC's mailing a second thought, it's never good to let NVIC go unchallenged if you live in a state with pending changes to immunization rules. 

What Does Climate Change Have to Do with Vaccines?

I come from a family of science-loving, science-minded people. While none of us went into the sciences as a profession, some of us have gone into professions in which science literacy matters. One hot-button issue in our family is climate change—specifically, climate change denialism. We’ve seen the damage done by these anti-science zealots whose aim is to create enough doubt in the minds of the regular citizen to thwart legislation that could help halt the relentless march toward global disaster. We’ve watched as journalists, for many years, decided to present the climate change issue as a controversy requiring equal air time for both the climate change scientists and the denialists, prolonging this period of doubt. The result? While more than 98% of scientists are in agreement that our planet is warming, people in the United States are split about 50/50 on the issue. This will have devastating impacts on our future, and it deeply bothered members of my extended family, as well as myself. Several members of my family are particularly vociferous about how damaging denialism is in the climate change discussion, rivaling perhaps only me in my drive to counter anti-vaccine rhetoric. They do not let any opportunity pass them by in which they don't speak up in favor of the science. It's one of the many things I admire about them.

So what does this have to do with vaccines? Well, there is an interesting parallel between the climate change “controversy” and the vaccine “controversy.” Namely, that the so-called controversy was manufactured in both cases despite the fact that there exists remarkable scientific consensus; that this resulted in doubt sown in the minds of the public that was not backed by science; and that the results will be harmful to human beings. The parallel is so complete that even the media’s handling on both of issues is strikingly similar. Nowadays, the media does not, for the most part, feel that journalistic balance is achieved when a climate change story features a denialist. If anything, it puts the whole story out of balance. Over really the last year or so, the media has stopped featuring anti-vaccine activists in every vaccine story published or produced. But the media has been complicit in both cases of misrepresenting science. This parallel is something we talk about with some regularity in my family.

Then this happened: one of my "climate change guru" family members went to the doctor after contracting pneumonia. In the exam room, she decided to ask the nurse her advice regarding vaccines. She tells me that the nurse replied: “I think there are too many.” I'm not sure what else the nurse said, because Climate Change Guru immediately realized this was about to turn into a "conversation." I was sick to my stomach that a health professional would sow fear and doubt about vaccines in an exam room. I was sick because I knew exactly how powerful this nurse's doubt about vaccines could be. I'd been in that position before--a scared new parent with a baby, looking to any and all medical professionals in the clinic for information about vaccines and vaccine safety. I know a great deal more about vaccines and the lies of the anti-vax movement now than I did as a new parent. I have no doubt that if a nurse had said these words to me in that lull between the doctor’s exam of my child and the administering of the vaccines, I would have been filled with fear. I know I would have delayed the vaccine in question, perhaps even skipped it altogether.

To my mind, a nurse is a member of the medical establishment, and if there is widespread disagreement in the medical establishment about the safety of vaccines, I would never put my child in what I had been convinced, by a medical professional, was harm’s way. But by walking out that door with my child left unvaccinated, I would have left him vulnerable to any number of devastating illnesses. How would I have made sense of things if my son had contracted, say, pertussis during the seemingly constant pertussis outbreaks? Or measles, during the various measles outbreaks we've experienced? If he'd been hospitalized, and the doctors caring for him asked me why I hadn't vaccinated him in order to spare him this pain and suffering, I would have said: "A nurse told me there are too many vaccines and I got scared." And I would have felt betrayed by the medical establishment I trusted. 

“This nurse speaks to countless patients,” I told my Climate Change Guru. “I am certain some of them are parents. What if a parent chooses not to vaccinate based on what this nurse says and the child contracts pertussis? What if that child passes pertussis on to an infant? What if the infant dies?” I could feel my heart racing, the anger coursing through my body. “You have to say something,” I continued. “You have to write a letter.”

            “I will not do that.”

            “What?” I sputtered.

            “I’m not going to get a nurse fired for sharing her opinion with me.”

            “You don’t get her fired. You don't even have to mention her by name. Hell, write it anonymously if you want. The head of the clinic may take it as an opportunity to clarify clinic policy. She can’t be allowed to continue saying this stuff in a medical setting. She’s entitled to her own opinion, but it is flat-out wrong for her to spout misinformation in a medical setting to patients. There is absolutely no evidence to back up her opinion, and all kinds of evidence to the contrary.”

            My Climate Change Guru abruptly ended the conversation and walked out. She would not mention this experience to anyone at the clinic, and was, I could tell, regretting even telling me it had happened.

            I’m still angry. I’m disappointed. And I’ve done a lot of thinking about this experience over the last few days. I’ve realized that the climate change/vaccine parallel continues in ways I hadn’t even considered, and it’s helped me pinpoint why, exactly, I’m still angry.

Imagine this: My Climate Change Guru attends parent-teacher conferences for her child. In that parent-teacher conference, she asks her child’s teacher about his teaching philosophy regarding the science of climate change. The teacher replies: “Well, I believe climate change is a hoax, but I teach ‘both sides of the issue.’” My Climate Change Guru would not leave that classroom until she’d given the teacher a piece of his mind. She’d likely go to the principal and complain, perhaps pull her child from the class. It’s not just about her child. It’s about all the other children this teacher is educating. In a position of power and influence, he is capable of affecting these children’s educational outcome, even their world view. His views on climate change could “infect” his students. Would Climate Change Guru walk away quietly?

Not a chance.

            Then why did she walk away from the nurse? What is different in this scenario? After all, the parallel is complete. The nurse is in a position of power and influence. What she says and does can have a substantial impact on a child’s health outcomes—and by extension the health outcomes of the entire community. If a family chooses not to vaccinate because of her opinion that there are too many vaccines, that family could contract a vaccine-preventable disease. They could then pass that disease on to others in the community. The response to this? A shoulder shrug. It was the nurse’s “opinion.” Climate Change Guru wasn’t going to make trouble.

           Of course there are anti-vaccine nurses, just as there are anti-vaccine teachers, anti-vaccine car mechanics, anti-vaccine postal workers. In fact, since beginning work in this vaccine world, I’ve come to understand that there are far more nurses who believe vaccines are harmful than I could have dreamed possible. This is one reason why groups such as Nurses Who Vax are so crucial. What bothers me most is my family member’s decision to say nothing, in her failure to see the parallel. We have a moral obligation to speak up at moments like this—which is exactly what my Climate Change Guru would have me believe about the climate change discussion. “We can’t let this happen on our watch,” is something she’s said to me before. I challenge her, and anyone else who has heard similar sentiments in the exam room: will you let anti-vaccine rhetoric echo in the halls of medicine on your watch?

Telling Anti-Vax Parents They're Wrong Only Makes Them More Anti-Vax

By Karen Ernst

Today, a study in the Journal of Pediatrics seemed to point out that what pro-vaxxers are trying to do is all wrong.  It might seem to suggest that debunking vaccine-autism myths, explaining relative risks of disease, and demonstrating the effects of vaccine-preventable disease is ineffective.  

The study tried to influence parents’ decisions about vaccines using four strategies, all utilizing online resources: correcting misinformation about the MMR-autism myth, giving information about the risks from vaccine-preventable diseases, presenting first-person narratives about children who had contracted VPDs, giving visuals of those risks. After being presented with one of these four strategies, parents were surveyed about how much more likely they were to choose an MMR for their children.  The information used came from the CDC, although the source of the information was not given to the parents surveyed.  The parents participating in this study came to the study with a wide variety of beliefs about vaccines, and almost none of them left with their beliefs being changed.

In short, the Pediatrics study found, in summary, that:

1. Showing ardently anti-vaccine parents proof that vaccines don’t cause autism only made them less likely to vaccinate.

2. Explaining the risks of vaccine-preventable diseases does not increase the chances that parents would agree to the MMR in the future.

3. Showing parents visuals about disease risk or giving them stories about children suffering from vaccine-preventable diseases did not make them more likely to vaccinate their children.

Those findings seem pretty damning for the pro-vaccine message, but I think we should take heart.  There is so much this study didn’t cover, and so much we can do that would work. Here are my thoughts on the findings:

1. Anti-vaccine parents have a broad range of concerns about vaccines beyond the vaccine-autism myth. Hitting one discussion point only irritates their sense of “they don’t get us.” The study might also fail to nudge ardently anti-vaccine parents because there is no human component, and the targeted parents have no opportunity to feel that someone took the time to genuinely hear out their concerns and address them in a personalized way.

2. Emphasizing risks often feels to parents like “fear-mongering,” and parents who refuse vaccines might feel that they are able to continue refusing vaccines since they live in communities with high vaccination rates where the risk of their child actually contracting a vaccine-preventable disease is low.  Just the other day on our Voices for Vaccines Facebook page, one mother commented, “I do not vaccinate, but would definitely consider it if traveling overseas.”  Anti-vaccine parents believe that their risk for contracting diseases is greater where those diseases are endemic, and trying to convince them that their children are at risk for complications from diseases they are unlikely to catch at home is problematic.

Conversely, anti-vaccine parents are likely to disbelieve in herd immunity. As Amy Parker’s mother once did, anti-vaccine parents often rely on organic foods and healthy living to protect their children from diseases that are often airborne and highly contagious. Those of us providing the cover of herd immunity to their children only make it easier for them to continue to delude themselves into believing that their lifestyle is the deciding factor. And because allowing children to become ill to prove our point is wrong in every sense of the word, it’s simply unlikely that anti-vaccine parents will change their minds due to fear of risk from disease.

In reality, what these anti-vaccine parents are doing is increasing the risk that these diseases will come back and that someone will suffer from a serious complication.  The parent who already vaccinates does so not only out of concern about serious complications, but also because they want to prevent illness in their children. But only ardent pro-vaccine parents are typically also passionate about the power of protecting her whole community.  However, maybe we can use pride in protecting the community not as a way to motivate parents to vaccinate but to motivate vaccinating parents to take pride in their actions and speak up about them.

3. Images and stories about children in peril because of disease only makes parents look for other dangers.  I call this the “Law and Order: SVU” effect, named so because after I have watched episodes of this show where children were in peril, I tend to see dangers for my children everywhere--beyond the scope of the subject of the episode.  

The researchers call this the “danger-priming effect.”  Priming parents for danger doesn’t make them more likely to take the solution you are offering, according to this theory.  It makes them more likely to look for dangers everywhere, including in that syringe you are holding out to them.

4. This study was limited in what it could reasonably do to ease fears about immunization because it was online and impersonal. There’s simply no way to quantify all of those conversations that occur on the playground among parents or around the Thanksgiving table or even between friends on Facebook.  

Parent-to-parent communication is entirely different than the communication in this study.  Think about what we know about ardently anti-vaccine parents:  They are more likely to believe conspiracy theories and thus less likely to believe officially sanctioned scientific evidence.  They are more likely to have a social network guiding them toward vaccine refusal, and providing them positive social reinforcement for their decisions.  The cold, impersonal online survey has no chance for success in the mind of a parent whose decisions are socially reinforced and are based on a distrust of official stances.

So what can we, as pro-vaccine lay-advocates, do? Are we likely to make parents less likely to vaccinate through our advocacy?  

I do not believe so.  In fact, I think lay-advocates--everyday parents and citizens--are key. Recent research shows that normalizing immunization works.  So let’s do that. Let’s let people know that we happily vaccinate our children because we understand the science behind it is clear and because we value our children’s health.

And vaccinating is normal.  Well over 90% of parents vaccinate on-time. If anti-vaccine parents feel that their position is being reinforced by their social network, then we as parents are not doing our job to protect our children and their friends. If every parent with fully vaccinated children simply stated that their children were vaccinated on-time, there would be a groundswell. The voices of these parents would drown out the fear-mongering and lies of the anti-vaccine movement, and concerned parents would feel more confident to join our ranks.

In other words--speak up. It just might work.

National Do Anything Except Watch the View Day: Tdap Edition

Over the summer, ABC Network made the cynical decision to hire anti-vax mouthpiece Jenny McCarthy to replace Joy Behar on its long-running daytime talk show, The View. While momentarily surprised that venerable journalist Barbara Walters would take a seat next to someone as scientifically illiterate as McCarthy, who plays fast and loose with facts, I quickly remembered that the business of television is not the business of ethical journalism. In the former, controversy and outrage are believed to result in an uptick in the Nielsen ratings. The decisionmakers at ABC--and I have reason to believe Barbara Walters was not one of them--clearly believe that the universal condemnation that followed the announcement that McCarthy had been tapped will lead to curiosity-seekers tuning in to see if McCarthy embarrasses herself again on the topic of vaccines.

But this tactic is a risky one. It's failed before, and I wager that it will fail again. We saw this happen just last month with Kris Kardashian's cringeworthy talk show, Kris. It was recently canceled after a six-week run, despite the network bosses betting on the big reveal of Kim Kardashian's baby and an appearance by Kanye West to draw viewers. It didn't happen. The difference between hiring Kris Kardashian and ABC putting Jenny McCarthy at the table on The View is considerable. Kris's show will be, and perhaps has already been, forgotten. ABC, on the other hand, has seen its reputation damaged--badly. At a time when the network is clamoring for more viewers, its gamble on McCarthy has lead so far only to widespread criticism, not just from parents (12,000 of whom signed a petition protesting the hire--which resulted in absolutely zero response from ABC), but also from media critics. No one praised this as a brilliant move to draw viewers.

This leads me to Voices for Vaccines' fantastic National Do Anything Except Watch the View Day on September 9th, the first day McCarthy will appear. (Disclosure: I am one of the VFV administrators, but I did not come up with this wonderful idea--Karen Ernst did). The idea behind it is to send a message to ABC--but, more important, the real world beyond the halls of the network--that we are not interested in McCarthy, her views on vaccines (or on Botox, which she's injected into her face, or on Syria, for that matter), and that we know desperation when we see it. To make this thing stick, Voices for Vaccines is encouraging people across the country to snap a picture of what they are doing INSTEAD of watching The View tomorrow. Working? At a playdate? Grabbing coffee? Watching paint dry? Getting a vaccine? Once you've snapped that photo, Tweet it to @voices4vaccines with the hashtag #notwatchingtheview. Consider adding @abcnetwork to your Tweet. If you like Facebook better, post your photo to the Voices for Vaccines' Facebook page. Need more information? Check out Voices for Vaccines' press release on National Do Anything Except Watch the View Day.

As for me, and my family, we have big plans for September 9th that do not include watching The View. School. Work. And the Tdap vaccine booster for my husband, because he wants to protect our newborn niece and our asthmatic daughter, for whom pertussis would be devastating.

"This Mama is Exhausted"

The other day, a mom e-mailed us asking for guidance for writing a letter to her state legislators regarding her concern about the rise in vaccine-preventable disease, particularly pertussis, and her state's lax immunization laws. In doing some research on this year's pertussis situation, I came across some remarkable statistics. That 2012 is the worst year for pertussis in nearly sixty years. That Washington State has a full 11% of the nation's pertussis cases (an infant has already died from the disease) while also being the state with highest conscientious objection vaccine-exemption rates. That my home state, Minnesota, is suffering a terrible pertussis year, with more than 4,000 cases recorded at the Minnesota Department of Health. 

But the most remarkable piece of data I came across was not a statistic. It was a story. It appeared on the notably anti-vax forums of Mothering.com. One mother did not vaccinate her younger children against pertussis. Then her children contracted pertussis. From her post: 

Sure they may end up with full immunity to pertussis (at least severely), but my 9yo and 11yo have suffered tremendously with uncontrollable coughing fits that wake them up every hour or two and leave them gasping for breath, gagging and sometimes vomiting.  They are exhausted.  The mama is exhausted...

sometimes running upstairs to comfort them dozens of times in a couple hours.  My 4yo has been up many nights herself and while not to the severity of the older two, it could break your heart to see her cough.  My 2yo is just starting to cough.  When the 9yo and 11yo started whooping and the severe cough we took them in to be seen and we have now been prescribed antibiotics for the entire family.  While I suspect the oldest 3 of us were exposed first, we won't take any chances in spreading it to anyone, and because I am 25 weeks pregnant.  I am hopeful that they will prevent my youngest little one from getting to the severe cough point. 

We have always said that we will choose not to vaccinate but always been willing to re-evaluate our decisions like any other.  When we found out the pertussis was circulating in our region we had decided to go ahead with the shots and even called the health dept...the kids came down sick literally 2 days later and the shots were postponed.  Sick irony if you ask me!

She goes on to say she know she will "catch some flak" for these comments, which is a profoundly sad commentary on the anti-vaccine community, if you ask me. But I was stunned by this mother's strength of character to not only decide that her decision not to vaccinate her little ones for pertussis was a mistake and to schedule those shots, even if she was too late, but also to stand up in a hostile environment as an insider (not as someone coming from outside the group) and say: the vaccine is better than the disease. I don't know if she will choose to catch her children up on all their vaccinations (one can hope) but I find this particular story, and this particular mom's courage, inspiring.

Moms Who Vax: Why Am I So Certain?

By Gillian Tarr

People who don’t vaccinate their children intrigue me. If I knew any personally, and was on good enough terms to have a frank discussion, I would be so tempted to put them under a microscope and try to understand where the wires had gotten crossed.  Perhaps that’s why I don’t know anyone who’s ever admitted to me that they don’t vaccinate their children.

Being a typical 21^st-century denizen of the Internet, I’m aware of the wide variety of arguments often used against immunizations.  Whether they’re being spouted by some swindler trying to sell garbage to bamboozled parents or by the bamboozled parents themselves, I haven’t yet read a line I would buy, and certainly none I would stake my children’s lives on.  

Gillian and one of her daughters.

Why am I so certain?  You see, I’m not just the lucky mommy of two amazing little girls.  My first passion in life was infectious disease epidemiology, and I’ve had the great opportunity to work directly with vaccine programs. I also have a Masters degree in epidemiology, as well as a graduate certificate in vaccine science and policy.

My education and all the reading required by my training and the original research I’ve conducted left me assured that immunization was one of the greatest triumphs of public health.  So when it came time to vaccinate my own children, I didn’t hesitate.  I was that parent making the special appointment to get my daughter Prevnar 13 when it came out despite her having already completed her series of Prevnar 7 (protection against six more strains of Streptococcus pneumoniae!). I was that parent convincing our pediatrician to give my 22-month-old daughter FluMist off-label (higher efficacy than the inactivated vaccine in children).

While I made sure my own family was as protected as we could be, I didn’t start paying much attention to the anti-vaccine movement till I was working on a phase 4 vaccine trial with a state health department. Part of my job was to telephone pertussis cases and potential pertussis cases. I talked to hundreds of families.  Anyone can find a website with a description of what pertussis does to a person, but hearing it first-hand was a completely different experience.  Parents described how their children had suffered, and how they felt powerless to help them.  Some even openly lamented their previous choice not to vaccinate their children.  Having my own children, I can’t understand how some parents can set their children up to suffer, leave them open to preventable diseases.

But of course, they think they’re saving their children from something worse. There are so many websites, blog posts, Facebook rants on one side or the other.  Almost everyone claims they’ve read "the literature" and that “science” supports them. Of course there’s also the conspiracy theory folks who purport the published literature is filled with lies and everyone’s in Big Pharma’s pocket. If these people knew how vaccines are developed and studied, they would realize they’re talking about thousands and thousands of people that would have to be paid off.  People like me.  I won’t even go into how little folks in public health are paid...

If you’re making a potentially life-or-death decision for your child, whom do you trust?  Do you trust the random blogger who pulls out choice sentences from studies to prove her point but neglects the rest of the study that negates it?  What about the folks that list dozens of animal studies on some vaccine your child wouldn’t even receive?  Dr. Bob Sears, whose only credentials as a vaccine expert are of his own making?  Are you reading the literature yourself and substituting your understanding of it over that of the specialists who’ve devoted their lives to science and the analysis of scientific research?  Do you dismiss the advice of the CDC, the AAP, and the doctors and researchers who have devoted their lives to understanding and improving vaccines?  If so, why?

When did the experts become the ones you can’t trust and the amateurs--many of whom are just trying to sell you something—become the ones you bank your children’s lives on?  

On the rare occasion that I do discuss vaccines with someone, I don’t try to convince them that vaccinating is the right choice.  I simply give them resources so they can see for themselves what the true experts say and try to point out the difference between the consensus of the scientific community and the opinions of a few.

Gillian is the mother of two glorious little girls and trained as an infectious disease epidemiologist. She currently works in the private sector but remains passionate about public health.

Moms Who Vax: There's an Anti-Vaccine Movement?

By Katie Ellis

It's no secret that I have always been science-minded.  My entire life, I wanted to become a doctor.  I took AP science courses in high school, entered college majoring in biology/pre-medicine, and enjoy reading scientific journal articles "for fun." It was no surprise, therefore, that, as a microbiologist whose work focuses on vaccines, I never questioned vaccinating my children.  I knew how great of an achievement vaccines were for the history of science, and the profound enhancements they have made to public health.

Katie Ellis, mother of two

My son was born in 2009, and he was vaccinated per the CDC and AAP recommended schedule.  I knew I was making an informed, intelligent choice to protect him from deadly childhood diseases. I had heard all of the hype with the Andrew Wakefield fraud incident, but knew that it was nonsense, and never doubted my vaccination choices. At this point, I was obviously pro-vaccine, but had never given a thought to advocating for the use of such vaccines.

Soon after this, Dr. Paul Offit spoke at my place of employment.  The topic of his talk was the anti-vaccine movement, which intrigued me – I didn't know there was a big enough group of people against vaccines to form a movement.  After hearing Dr. Offit speak, I felt a multitude of emotions. I felt fascination, for Dr. Offit was such a dynamic speaker who clearly had vast amounts of knowledge about vaccines and infectious diseases.  I felt anger, that parents in this country had access to life-saving technology and were not utilizing it.  More than that, parents were not vaccinating due to fear, uncertainty and doubt spread by Playboy models, geologists and other parents who have graduated from the "University of Google."  Mostly, though, I felt a spark of passion to become an advocate for the safety and efficacy of vaccines.

This spark was further stoked when I became pregnant with my daughter. I began to read about outbreaks of whooping cough that occurred in California, in which ten babies (not yet old enough to be fully vaccinated) perished. I read about the anti-vaccine movement, and how it grew by scaring new parents with absolute lies.  I started to peruse pro-vaccine blogs, such as Shot of Prevention, and Facebook pages, such as Vaccinate Your Baby and Nurses Who Vaccinate.  Amazed by the depth of knowledge of the active pro-vaccine advocates on those pages, I was deeply inspired – and my passion grew.

When my godmother was diagnosed with whooping cough and sent to the hospital for two weeks, just months before my daughter was due, it was the final straw.  Right before her diagnosis, my family – including my godmother – had all been gathered at the hospital.  We were visiting my grandmother, who was sick with uterine cancer.  Not only was my grandmother at extreme risk, but so was my unborn child and I.  I was scared that I wouldn’t be able to fully protect my child when she was born and was too young to be vaccinated.  Thus, my passion grew to the point that I began posting comments on pro-vaccine blogs and pages.  As I posted more, the more I learned, the angrier I became, and the more passionate I became.  I now have confidence to post on anti-vaccine pages and blogs and new articles; I feel comfortable writing letters to members of Congress.  I am a greatly passionate vaccine advocate, and very proud of it.

Katie Ellis is a mother of two, who works full time as a microbiologist specializing in vaccines. She loves spending time with her family, running, baking, and being active.

"Scare Tactics"

Recently, a mother who immunizes her children tried to post on a blog called "Modern Alternative Mama" in response to a worried mother of a newborn. The new mother had chosen not to vaccinate her baby out of fear, but was living in a community in the midst of a pertussis outbreak. Her pediatrician had called to ask if she might reconsider immunizing her baby at this point. The mother seemed worried--she didn't want to vaccinate, but clearly she didn't want her infant to contract pertussis. After reading responses from other non-vaccinating mothers--telling her to hold strong, to rest assured that breast milk would somehow make her baby immune from pertussis, one of the most devastatingly contagious diseases on the planet--this mother-who-vaccinates felt moved to post a response. 

She asked the mother of the newborn to reconsider getting her child the Dtap, and linked to Everlee's pertussis story here on this blog as an example of how an infant handles pertussis. Not only was the comment not approved by the woman who runs Modern Alternative Mama, but the mother also received an e-mail saying that the blog didn't allow commenters to use "scare tactics" and so the comment would be censored. After reading the e-mail myself, I was somewhat surprised--until I went to the blog's Facebook page and saw the anti-vax posts from the blog author. Typical stuff I encounter on a daily basis from the underbelly of the mercifully sparsely populated anti-vax world, more banal than the truly bizarre "Moms Who Vax Make Up Their Stories" conspiracy theories floating around. 

Still, I found myself stewing over this one.

In many ways, I am not surprised that we live in a world where the true story of a vaccine-preventable disease can be considered a "scare tactic." After all, we are still burdened by climate science skeptics and Creationists who believe the earth is 6,000 years old and that we hung out with our dino friends. But coming as it did in the midst of preparing a story from another mother whose life was changed by a vaccine preventable disease, I found this appellation--"scare tactic"--used to describe Everlee's story particularly distasteful, even for the anti-vax crowd. While serious side effects from vaccines are exceptionally rare, I would never look a parent, whose child had had a bad reaction to a shot, in the eye and say: your story, and your child, are a scare tactic, and therefore you do not deserve to be heard. I'm not certain how you can respond to any parent who is suffering in such a dismissive way and remain human. It doesn't necessarily mean you agree with their theories as to why their child became ill, or that you acknowledge that such reactions are common, but it means you have a basic level of compassion. 

Illness and death from vaccine-preventable disease, which are far, far more common and, unfortunately, on the rise, are not scare tactics. They are the true stories of fellow human beings who want to be heard and, even more important, who want to save other families the heartache they've suffered. More, the science is on their side. The facts are on their side. And I, as a parent, am deeply grateful for the work they do by keeping their wounds wide open in order that they might save lives, something those who criticize them have no interest in doing. 

Everlee's Story

Editor's Note: A couple of months ago, we heard about a five-week-old infant in an ICU here in the Twin Cities who had been diagnosed with pertussis , and was battling for her life.  A few weeks ago, the mother of that strong-willed little girl, who fought the pertussis tooth-and-nail and won, got in touch with the Minnesota Department of Health asking for ways she could share her story of a life forever changed by a vaccine-preventable disease. Emily Stevenson's story is below.

UPDATE: CBS affiliate WCCO led the news tonight (2/9/2012) with Emily and Everlee's story. Click the link to watch it.

Everlee, five weeks old, in the ICU

I am the mother of a beautiful four month old baby girl.  When our daughter was 5 weeks old she began having a mild cough.  Within a few days her coughing spells became much more frequent and intense, she developed a fever, and started having apnea episodes where she would stop breathing for several moments.  It became clear that we were dealing with something very serious.  

We brought her to the doctor where our fears were confirmed: she was diagnosed with pertussis (whooping cough).  We were surprised at how this could happen, as everyone in our family had received the Tdap (diphtheria-pertussis-tetanus) vaccine (Editor's note: Tdap is the pertussis booster for teens and adults; Dtap is the pertussis vaccine course for infants and children).  There was a confirmed case of pertussis in our older daughter's classroom, and although a fluke, we learned that it was possible for the bacteria that causes pertussis to have traveled home on her clothes.  Our baby daughter was at the time too young to receive the DPT vaccine and was vulnerable to being exposed to pertussis.  

She was hospitalized right away, and as her coughing spells became more intense and worrisome she was moved into the intensive care unit.  There was very little that the doctors could do for her as she weathered through the peak phase of the illness.  Pertussis causes intense coughing spells along with other respiratory complications, and is particularly dangerous for infants because of their immature respiratory system.  Our baby had trouble clearing away the thick mucus in her airway and was continuously deprived of oxygen.  The illness also placed considerable stress on her small heart due to the pressure that had built in her chest. Unfortunately, these consequences are typical for an infant with pertussis.  

The weeks that we spent in the hospital were very difficult.  Our baby fought hard against a respiratory illness that her body was not ready to handle.  Each day we watched her struggle for breath, unable to eat or sleep, and have to linger in pain.  We are thankful for her strong will and for the good medical care that she received.  After three weeks in the ICU her symptoms began to wane indicating that she was past the peak phase of the illness.  We were able to bring her home to recover.  Her cough will last for several more weeks, but we are grateful for every day that she shows improvement. 

Everlee caught pertussis from an unvaccinated child

The reality is that pertussis can be largely prevented by the Dtap vaccine.  There are several children in our older daughter's grade level whose parents have chosen to opt out of having them receive the Dtap and other vaccines.  After this experience, we view their choice as part of a frightening trend.  In reality, what our baby went through could have been prevented.  

Parents who choose not to have their children vaccinated fail to realize that they are actually putting infants, and others who are vulnerable, at a high risk.  We have learned that because of this trend the incidence rate of pertussis in Minnesota has grown considerably over the past few years.  We are hopeful that for the safety of individual families and the community that more parents will heed the advice of medical professionals and make the choice to have their children vaccinated.

A Daughter's Legacy: One Mother's Story

By Stephanie 

I’m a mother of three children and a forthright vaccine advocate. However, only two of my children are vaccinated. My daughter was stillborn in April 2010. Losing her, finding out that her heart had stopped beating within my womb, has been the most shattering experience of my life. She was a beautiful little thing, weighing five pounds and twelve ounces. She had dark curly hair, perfect oval shaped little fingernails, blonde eyelashes and ruby red lips. My husband and I never found out why she died, her stillbirth was one of the “unexplained” ones.

When she died, the profundity of what had happened hit me like a sledgehammer. My baby died. I was a mother with a dead baby. For the rest of my life, I would have to deal with this fact One of my children dying had been my worst nightmare for as long as I could remember. I actually am incredibly sensitive to any story of a child being harmed or dying and often am found crying over news stories or magazine article that portray stories of these tragedies.

I never thought it would happen to me. But it did.

This is the crux of the anti vaccinationist movement. You will hear the cries “my child was born with a perfect immune system! Why mess with it? You never see these diseases anymore! My neighbour’s sister’s boyfriend’s son got measles and he was VACCINATED!”

The anti vaccinationists think it won’t happen to them.

This is because of the overall success of vaccines over time. There are a number of diseases that just are not in circulation in the Western world any more, such as Diphtheria, Rubella and Polio. Anti-vaccinationists have not seen, first hand, the horror of Diphtheria wards in the 40’s; they have not seen a child affected by Congenital Rubella Syndrome. (Editor's Note: Click here for photos of children with Diptheria and Rubella)

Neither have I, of course, but I truly believe that these people are blind to real situations where things can go terribly, terribly wrong. I, on the other hand, am constantly on the lookout for ways to keep my children safe and protected. Vaccination is a perfect example of a way to keep your children safe and protected.

Our youngest son was born during the peak of a Pertussis (Whooping Cough) outbreak. Well before he was born, we were advised to have our Pertussis boosters organised, but because I was so concerned about the spread of Pertussis, I had received mine back in 2009, just before I became pregnant with my daughter. Despite this, I still received another shot. Our older son, of course, was up to date with all his vaccinations. When the baby was born, my husband had his jab immediately.

Two weeks before my son was born, another little baby arrived in the world, on the other side of the country to me. This little boy died of Pertussis when he was 5 weeks old. My baby was 3 weeks old when we heard the story on the news and health authorities urged anyone with newborns to keep them indoors and for parents and carers to receive their DTaP vaccine.

For somebody who has already buried a child, this news was terrifying. It made me angry. It made me angry because the reason that this baby had died was because of the perpetuation of misinformation, spread by people who have no critical thinking skills, who cannot evaluate sources, who were urging parents to not vaccinate their children...and as a result, Whooping Cough had managed to penetrate the community. And the most vulnerable members of society, newborns, were paying the price. This little one was amongst many infants who have passed away from Whooping Cough. Dana McCaffrey, Callie Von Tornhout, Carter Dube.

See, it’s all about herd immunity, isn’t it? The more people that are vaccinated, the less able an organism is able to infect a person. Without ample hosts, the disease will die. But the diseases are coming back with a vengeance, because parents are choosing not to vaccinate anymore. There are more available hosts and as the anti vaccinationists bleat “if your kid is vaccinated, why do you care?” we must remember that not all vaccines are 100% effective. There will always be someone who doesn’t mount a good immune response, and so they might be unlucky enough to contract the disease. Furthermore, there are those who cannot be vaccinated, such as those who are immuno-suppressed, women who are pregnant, newborns and people with a genuine contraindication to receive vaccines.

I have always been a supporter of vaccination. But after experiencing the death of my daughter, my advocacy increased, I became a vocal proponent of vaccination and I didn’t care who knew it. In fact, the more people that knew it, the better! I believe that having to have deal with the death of my baby has made me all the more sensitive to children’s health issues and to avoiding unnecessary deaths. As someone who has experienced infant loss first hand, I will campaign to ensure that all parents know the facts about vaccination because I never want to see or hear about another small baby, or any child, for that matter, needlessly suffer the repercussions of a vaccine preventable illness. I am unapologetically outspoken about this cause, it is well known that it is a passion of mine. 

For some, they find it confronting and uncomfortable. I have been unapologetic about not allowing anyone who was not up to date with their boosters to visit my new baby until he had finished his series. I have also been vocal about close family members getting their DTaP, and they did. Not just for my baby, but for all the babies out there who need us to be protected in order to protect them. I have been “unfriended” on Facebook for entering into a debate about the Pertussis vaccine, and as the parties of the debate vehemently purported a range of untruths and incorrect information, I took them to task on the simplest of mistakes. For example, their claim that Pertussis was a virus. Now I asked them how on Earth they expect people to take their assertions seriously if they themselves don’t even have a grasp on basic immunology?                                

This is why I am unflinching  in my quest to increase the amount of correct information regarding vaccination. Because I need to challenge those who are proliferating claims that are downright wrong, influencing parents who don’t know any better, which in turn contributes to the fall in herd immunity. And as this happens, our children are in danger. My young baby, who was not old enough to receive the full series of his immunisations for Pertussis until he was six months old. That was six months of terror that he would be exposed to this insidious bacteria and I would lose another child.

I believe that if my daughter, as little and pure as she was, wanted to leave any sort of legacy, it was this. For her outspoken (yet civil) mother to light a fire underneath people, have as many parents as possible vaccinate their children and themselves to protect our newborns.

Stephanie is a teacher and mother who lives in Australia. You can read more of her writing at www.bornstill-sybella.blogspot.com.