"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. 

Informed Consent and Vaccines

By Dorit Reiss

The process of informed consent is more regulated for vaccines than for most medical treatments or drugs. Still, anti-vaccine activists often use “informed consent” as part of their general attack on vaccines. Parents, they say, are not given appropriate information about vaccines and their risks, so they cannot make an informed decision about them. That claim is incorrect.

When I teach my students about informed consent and vaccines, I use the Vaccine Information Sheet (VIS) - the basis of informed consent in this area – as a model, because it is a reasonably good form. To understand why, you need to first understand what informed consent means, and how it works in the context of vaccines.

The Basics of Informed Consent

Informed consent has two parts: the patient has to consent, or agree, to a treatment, and the consent has to be made after the patient has been given sufficient relevant information. Our system values patient autonomy very, very highly. With a few narrow exceptions (court order, emergency, lack of capacity to consent), a doctor may not provide treatment to a non-consenting patient. Even if the lack of treatment will kill that patient. An adult in sound mind has the right to choose death over treatment. A doctor providing treatment without consent may be liable for a battery (see Schloendorff v. Society of New York Hospital, 211 N.Y. 125, 105 N.E. 92 (1914).) However well-intentioned the doctor, she may not give treatment without consent.

For a child, the consent of the child’s legal guardian  - usually the parent – substitutes for the child’s consent. There are some exceptions to that – doctors may treat children in an emergency when no parent is around; a state may mandate treatment over a parent’s opposition, through legislation or court order, in some circumstances; and most states allow adolescents to consent to certain treatment without parental permission.

Informed consent cases are different. In those cases, the patient actually consented to the procedure. The claim, however, is that that consent was flawed, because the patient did not have complete information. It is a claim that the doctor was negligent in providing the information necessary for the patient to fully understand the situation and make an informed decision (Natanson v. Kline, 350 P.2d 1093 (1960)). To evaluate informed consent, courts use one of two approaches. Some courts compare the information provided to the patient to the information a doctor in good standing would provide—what is customary in the profession to give. This is referred to as the professional standard, or the physician standard. It requires expert testimony on the standard in the profession.

Other courts ask the jury to compare the information given to the patient to what a reasonable patient in the plaintiff’s shoes would consider important. This is referred to as the patient standard or the material risk standard.

If a patient underwent a treatment without informed consent, a doctor may be liable for harms arising from that treatment – even if the treatment was performed properly, even if there was no medical malpractice.

Informed Consent and Vaccines

What would a person need to know to give informed consent to a vaccine under this rubric (or what would a parent need to know to give informed consent to vaccinate a child, which is the more common situation)? A parent would need to know “the nature of the treatment” – that the child is getting a vaccine, whether it’s injected or oral; the “risks and benefits” of the treatment – the benefits of the vaccine, in other words, the risks from the disease we vaccinate against; the risks of the vaccine – potential side effects; and alternatives, which do not really exist for vaccines.

In 1986 Congress passed the National Childhood Vaccine Injury Act. The act did a number of things, but the important part for our purposes is that it required the Secretary of the Department of Health and Human Services to

“develop and disseminate vaccine information materials for distribution by health care providers to the legal representatives of any child or to any other individual receiving a vaccine set forth in the Vaccine Injury Table. Such materials shall be published in the Federal Register and may be revised.” (§300aa-26).

The materials developed require – for their initial preparation and any revision – a 60-day notice and comment process with the public, and consultation with “the Advisory Commission on Childhood Vaccines, appropriate health care providers and parent organizations, the Centers for Disease Control and Prevention, and the Food and Drug Administration.”(id – see http://www.law.cornell.edu/uscode/text/42/300aa-26).

Today, any health care provider administering a vaccine is legally required to provide these materials to the individual – or a guardian, in the case of a child – before giving the vaccine.

These materials – referred to as the Vaccine Information Sheets – can also be found on the CDC’s website. 

Examining one selected at random – the DTaP Vaccine Information Sheet - the VIS opens with “Why get Vaccinated” - including a description of the diseases, who should or should not get the vaccine, and the potential risks from the vaccine. It also provides instructions of what to do if, after the vaccine is administered, a reaction develops,which include calling your doctor or going to an emergency room, reporting the reaction to the Vaccine Adverse Event Reporting System, and information about the compensation mechanism.

In short, a parent reading through the Vaccine Information Sheet should get a good sense of why the vaccine is given, what are its benefits and risks, and additional information, such as what to do if there’s a problem. This seems to cover the requirements of informed consent. The hope is that the recipient of the VIS will read it before the vaccination. Of course, all doctors can do is provide the information. It is the responsibility of the patient or her legal guardian to read it.

Anti-vaccine Claims and Responses

Anti vaccine activists like to claim that no informed consent is given before vaccinating. As explained above, these claims are incorrect. These individuals base their claims on three arguments, none of which is valid.

First, they suggest parents should be given the vaccine insert as part of the consent process. Second, they claim parents are not told that vaccines can cause a range of  side effects (side effects that have not been scientifically documented and, in the case of some, have been disproven) such as SIDS or autism. Finally, they criticize the fact that parents are often not informed of the ingredients before being the vaccine is administered.

I will take these objections one at a time.

Not giving the insert:

The insert – of a vaccine or a drug – is not a good document to base informed consent on. The insert is a legal document, heavily regulated by the FDA. It has substantial useful information, but can also mislead the patient (see: http://www.skepticalraptor.com/skepticalraptorblog.php/vaccine-package-inserts-debunking-myths/ for a detailed discussion of inserts). In relation to informed consent, at least two problems make inserts inappropriate: they do not explain the benefits of the procedure; and they must legally list any problem that occurred after the product was put on the market, whether or not causally related to the vaccine. The combination of not mentioning the benefits and mentioning unrelated bad outcomes can make the vaccine look much worse than the reality – substantial benefits and low risk – and misinform parents.

Not mentioning “side effects” like autism and SIDS

However much anti-vaccine activists would like to believe otherwise, extensive scientific studies have examined whether vaccines cause autism or SIDS– and no connection was found. That is why these risks are not mentioned on the Vaccine Information Sheet. Mentioning risks that are not supported by evidence is not promoting informed consent: it’s undermining it.

Not Providing Parents with a List of Ingredients

A list of ingredients is not part of informed consent requirements for any drug. If a patient has a known allergy to an ingredient, or a potential allergy, they should, of course, be notified of the presence of that ingredient. But otherwise, a list of ingredients alone – in the abstract – does not promote the patient’s understanding of the risks or benefits of a procedure, and does not advance the patient’s ability to decide if the procedure’s benefits outweigh the risks. It is therefore not a proper part of the informed consent discussion.

The informed consent process for vaccines is carefully regulated and thought through. A serious effort is made to provide patients with the information they need in a short, accessible format. As long as the healthcare provider performs the legal duty of providing the Vaccine Information Sheet before vaccinating, the patient – or parent – has before them the information necessary to make an informed decision.

Certain parents, because of language problems or other problems, may need more help, and should receive it; but that is true of any informed consent process.  It does not mean the process itself is in any way flawed.    

Author's Note: I'm grateful to Nathan Boonstra, Ashley Shelby, and Alice Warning Wasney for their corrections to previous drafts.

Dorit Reiss is a professor of law at the University of California. She has published writings on administrative law, and recently wrote "Compensating the Victims of Failure to Vaccine: What are the Options" Dorit is a member of Voices for Vaccines' Parent Advisory Board.

Moms Who Vax: Crazy Vaccine Lady

By Johanna H.

There is a meme that comes around every so often, one that I think is very easy to relate to. It shows a stick figure thoroughly frustrated at the computer who

is resisting going to bed because "someone is wrong on the Internet." I always chuckle when I see it, because there have definitely been those times in discussions on a wide variety of topics where I've just had to step away and let people "be wrong," if they choose to be. But I still post the Facebook links about vaccine safety, what new vaccines may be on the horizon, even though sometimes it feels like maybe I'm either boring the living daylights out of all the poor people who are friends with "that crazy vaccine lady" or even causing fights but continuing to post regarding a controversial parenting decision. 

But this week a friend quietly told me that her children are now fully vaccinated in large part because of the information she was getting from me, but more

importantly because she simply had a counterweight to the anti-vaccine environment that she is surrounded by. Just having someone in her tribe of moms who fully immunizes helped give her the ability to feel confident in a choice to vaccinate her children. My friend is a loving, strong woman who makes educated and mindful decisions. In this case, all she needed was to see someone else making those same choices, too.

This is why I share on Facebook when the latest study on flu vaccine safety comes out, or when there is an update on how close to eradication we are with polio.

Every share, every bit of advocacy helps to create a culture that is more hopeful, more confident, and more at peace. I am The Crazy Vaccine Lady not because I

am so dazzlingly clever or because I’m just that committed to making sure all the "i"s are dotted and "t"s crossed, or even because somewhere somebody on the

Internet (or in the homeschool co-op) is wrong.

I will wear that Crazy Vaccine Lady badge because parents have a right to be afraid of the right things. And speaking parent to parent, mother to mother, is how

lives can be changed, and even how some lives will be saved: one conversation, one parent, one child, one shot at a time.

Johanna H. is a Catholic work-at-home mom who lives in the Northeast with her husband and six children.

It's About Time: Voices for Vaccines

The reason this blog exists—why it continued beyond our initial efforts—is because of fellow parents. Since starting Moms Who Vax, Karen and I have met many remarkable moms and dads who choose to vaccinate their children and are, frankly, fed up with the lack of push-back against the loud and rancorous voices of parents who intentionally leave their children unvaccinated. By sharing their stories, we know many of these parents have changed minds, provided reassurance, perspective, and sanity.

But it’s not enough. It’s one thing to blog. It’s quite another to join forces in an official way, under the auspices of an organization. Organizations get invited to conferences. They get a seat at the table. They can streamline advocacy efforts, print flyers, provide educational materials, reach out to media, provide members to testify at legislative hearings. Time and time again, Karen and I heard parents asking: what else can we do?

Now we have an answer: join Voices for Vaccines.

Over the past eight months, Karen and I have been working with vaccine legends Dr. Deborah Wexler, Dr. Paul Offit, Dr. Alan Hinman, and Dr. Stanley Plotkin to re-launch—and perhaps more important, to re-imagine—their pro-vaccine advocacy organization, Voices for Vaccines. Initially designed to be the “go-to source for vaccine information,” the project stalled, despite great interest. When Karen and I came to the project, we both felt very strongly that a parent-driven, parent-focused organization was the missing link in this vaccine conversation. More than ninety percent of parents overall vaccinate their children. If this is the case, why are the anti-vaccine parents the ones we see in the media, on blogs, in the comment sections, and at legislative hearings? Why is the anti-vax National Vaccine Information Center the dominant parent organization in the vaccine world? It was this conundrum that we wanted to address, and the founders of Voices for Vaccines were in complete agreement.

Karen and I held a few conference calls with some of our past contributors and trusted partners to share the initial idea, and when we gave them a description of this new direction, the excitement was palpable. One of our “Moms Who Vax” said she’d been dreaming about such an organization for years. The enthusiasm was infectious (no pun intended--okay, pun absolutely intended), and it has kept us going over these last six months. Between preschool, soccer games, dance lessons, our day jobs, and our other vaccine-related efforts, this thing slowly came together, along with the help of some amazing individuals, including Immunization Action Coalition's Julie Murphy and Mike Franey.

Now we are ready to open the workshop doors, and even though we still have work to do, particularly on the website, we didn't want to delay bringing pro-vax parents into the fold any longer.  At Voices for Vaccines, you will find a home for the ninety percent of us who vaccinate our children on time. You will find vaccine information vetted by the best minds in vaccinology, but you will also find opportunities to make your voice heard—in your local community as well as nationally. You can share your story in the VFV blog Parents Who Vax (still a work in progress). You will be able to download toolkits on topics from “How to Write an Op-Ed” and “Keeping the Media Honest” to “How to Talk to a Vaccine-Hesitant Parent” and beyond. You can sign up for the VFV newsletter to stay on top of the latest vaccine news and to receive action alerts, including calls for comments on articles about vaccine topics (typically dominated by anti-vax voices) and invitations to conference calls with heavy-hitters in the medical and scientific communities, and beyond. Learn about opportunities to join forces with other pro-vax parents! We need you--your creativity, your ideas, and your passion. 

We have a new website, although it is far from complete and still in need of fixes and design tweaks. But this is just the beginning. Even more changes are in store, and we want you with us. Please join VFV and join forces with other pro-vax parents to take over the world—or at least protect children and vulnerable members in our community from vaccine-preventable disease and bad science!

For us, and for the founders of VFV, this relaunch is the stuff of dreams. A national organization uniting parents who vaccinate and are passionate about it?

It’s about time.

Editor's Note: If you're in Minnesota this weekend, please come to the Voices for Vaccines' launch party, "Our Voices Rockin' at downtown Minneapolis' PourHouse. Hosted by Don Shelby and featuring the music of rock band Verge, there will also be a silent auction. Saturday, January 19th, 7pm-10pm. Suggested donation of $10 and 21 and up. Hope to see you there! 

"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.

Madeleine and the Flu

Twelve little girls in two straight lines got the flu!

I was at a performance of Madeleine’s Christmas at a local theater the other day, my two children in tow. Madeleine’s Christmas is a charming book in the Madeleine series by Ludwig Bemelmans, written in 1956.  But as I watched the storyline unfold on stage, I found myself thinking like the MWV that I am, worrying about the eleven little girls suffering from influenza in an age when there was little to help them, besides the warm soup Madeleine (the only one unaffected) was able to serve them. I think my MWV radar was unusually sensitive that day, too, because my sixty-six-year-old father, who had received the flu vaccine this year, had just finished a bad bout with this year’s flu, and my children and I were struggling to kick a variety of different viruses as well.

Luckily, the eleven little girls—and Miss Clavel—all recovered in time to take a magic carpet ride around Paris, but the show did get me to thinking about how unusual this year’s flu season has been and why it’s so important that we see widespread vaccination, so that vulnerable people who might be more suspectible to the flu, even if they’ve been vaccinated (like my father), are better protected.

So I asked the folks at the CDC some of the questions that might be on your mind this flu season. The information below comes directly from CDC press releases, the CDC website, and communication with CDC representatives.

Why does the 2012-2013 flu season seem to be worse than previous flu seasons?

Flu seasons are unpredictable. The severity of influenza seasons can differ substantially from year to year. Over a period of 30 years, between 1976 and 2006, estimates of yearly flu-associated deaths in the United States range from a low of about 3,000 to a high of about 49,000 people during the most severe season. Each year in the United States on average more than 200,000 people may be hospitalized during a flu season. The 2009 H1N1 pandemic is an example of how unpredictable the flu can be. Click here for more information about the 2009 H1N1 pandemic.

The 2011-2012 season began late and was relatively mild compared with previous seasons (see “2011-2012 Flu Season Draws to a Close” for more information). Most of the viruses characterized so far this season have been H3N2 viruses; which are typically associated with more severe seasons.

Did the 2012-2013 flu season start “early”?

Significant increases in flu activity in the United States have occurred in the last two weeks (editor’s note: refers to late November, early December), indicating that an early flu season is upon us. Influenza-like-illness (ILI) activity levels in parts of the country are already higher than all of last season. 5 states are already reporting the highest level of activity possible. Click here for information from the CDC that discusses flu activity thus far. 

How effective is the flu vaccine?

The composition of the flu vaccine is reviewed each year. If needed, the vaccine is updated to protect against the three flu viruses that research indicates will be the most common during the upcoming season. New vaccine is manufactured every season. The 2012-2013 flu vaccine will protect against an influenza A (H1N1) virus, an influenza A (H3N2) virus and an influenza B virus.

Two factors play an important role in determining the likelihood that influenza vaccine will protect a person from influenza illness: 1) characteristics of the person being vaccinated (such as their age and health), and 2) the similarity or "match" between the influenza viruses in the vaccine and those spreading in the community.

In general, the flu vaccine works best among young healthy adults and older children. Lesser effects of flu vaccine are often found in studies of young children (e.g., those younger than 2 years of age) and older adults. Older people, who may have weaker immune systems, often have a lower protective immune response after influenza vaccination compared to younger, healthier persons. This can result in lower levels of vaccine effectiveness in these people. (This might explain why my father, who got the vaccine, still got the flu).

The good news is that most of the viruses characterized at CDC so far this season are well-matched to the vaccine viruses.

I want to make one note about the basic science of flu vaccines. Every once in a while, you might find an anti-vaccine website, like NaturalNews, make a comment about the flu vaccine. Last year, it was a story on its site that said that the reason a new flu vaccine had to be created every year is because the scientists “couldn’t get it right.” Most of you probably see scientific illiteracy in this statement, but in case it’s not clear, the flu virus changes each year, unlike most other vaccine-preventable diseases, and therefore a vaccine must “match” the predicted influenza viruses likely to spread in the community during the upcoming flu season in order to be effective.

You might also hear some people—even people in the world of public health—denigrating the current flu vaccines as ineffective. This shouldn’t be interpreted as a call to forgo the vaccine. Most of the time, when public health authorities, or leaders in the world of epidemiology, such as Michael Osterholm of the University of Minnesota, criticize the flu vaccine, they are advocating for a universal flu vaccine, or at least a better seasonal flu vaccine, both of which scientists are working on. 

I will take 60% protection over nothing any day, having lived through flu myself in years previous. And, without question, I would offer my children that same protection. I’m pretty sure that if that rug merchant in Madeleine’s Christmas had been peddling flu vaccines instead of magic carpets, the twelve little girls in two straight lines would have had a healthier Christmas, too.

Moms Who Vax: "But I Saw it with My Own Eyes!"

By Karen Ernst

A mother's connection to her children is powerful. She is the first to tell when the baby needs to be fed, the first to know that her child is overtired, and the first to know that something is not going well at school. Logic must dictate, then, that she would be the one who would know all about a child's disorders and conditions, be they autism, epilepsy, ADHD, or what have you. She should know when things went awry, why, and how, surely.

Not so fast. 

While a mother might sense when something is wrong, we do need an objective eye to help us discern exact diagnoses and to help us construct the history of our children's conditions. A mother of a sleepless baby may bring her bundle in and announce confidently that it must be an ear infection, only to learn that her children's ears look healthy and normal. Likewise, when we visit our pediatrician's walk-in strep clinic, I'm always struck by the number of “negative” prognoses that are handed out. How can we all be so wrong so often? In these moments, I usually tell my pediatrician, “You can tell which of the two of us actually went to med school.”

I've known "mom's instinct" can lead us astray for some time now, but this idea was revealed clearly to me after a trip to the zoo that ended with itty bitty bits of strawberries and Pizza Rolls.

We were at the “little zoo,” where treats are sold every few feet to ensure my children leave hyper and sticky. This time, I buckled and bought both boys strawberry popsicles—the kind made from actual strawberries. I patted myself on the back for providing an actual fruit treat. I was a good mom. About two and a half hours after we got home, the boys were hungry for lunch. Because I had made such an excellent treat choice, I okayed their choice for a Pizza Roll lunch. 

Fifteen minutes later, I was punished for my choice when the older one broke out in hives up and down his arms and across his forehead. Unfortunately, our history with hives is bad. This same boy had broken out in hives that turned severe as a result of an allergic reaction to an antibiotic. (As a side note, despite his adverse reaction to an antibiotic, I am not part of the anti-antibiotic movement.) 

I admit that I panicked, but I didn't panic hard. I called and got an immediate appointment at our clinic with a pediatrician I had never met. Not knowing our history, she misunderstand my angst about the hives and gave us a referral to the clinic's allergist. (It turns out that this visit was entirely unnecessary.) In a week's time I would see the allergist, but in the meantime, we had Benadryl on our side.

A week later, we went into the allergist. I am forever grateful that we saw this particular doctor. He was kind and listened to my worries. I told him I was sure my child had developed an allergic reaction to strawberries, but he insisted that the timing made it impossible. An allergic reaction would have occurred at least an hour earlier. I believe I actually said, “But I saw it with my own eyes!” He kindly explained to me that what we see and what we believe need to be supported by science. Fortunately, being a fan of science, I cast aside what I “saw with my own eyes!” and chose to believe him.

But the Pizza Rolls! He ate those fifteen minutes before the hives appeared! Do you know how much stuff is in Pizza Rolls? It's a veritable Who's Who of manufactured food bits! How would we ever parse which ingredient gave him the reaction!

The good allergist assured me that it was extremely unlikely that the boy was allergic to anything in Pizza Rolls. And then he said, “But if you want reassurance, do a little test for yourself. Cook some more and cut them up into tiny pieces. Give your child one piece at a time, and monitor him. If he get hives again, call us.”

I liked this plan! However, I was still unsure about the strawberries. Remember, I saw it with my own eyes. I had constructed my own narrative about what had happened, and it was hard to shake. So I also bought strawberries and cut them into tiny pieces, too. We would do the strawberries one day and the Pizza Rolls the next.

The results? Nothing happened. No hives, no anaphylaxis, nothing. The allergist, and science, were right.

I feel for parents who believe they know what happened to their children, only to have that belief contradicted by science. After all, doing a quick food test purely for my own reassurances was easy. A parent cannot give a child another MMR to see if it makes that child more autistic or another DTaP to see if that child becomes more epileptic.

Nonetheless, when study after study after study after study contradict a parent's instinct or experience, we have to side with the science. Parents are simply not the source of all knowledge when it comes to a child's medical issues. Bring your children to doctors and trust the science that supports what they do. And do not be swayed by another parent's eyewitness account. Sometimes what we see should not be believed.

Karen Ernst is a mother and teacher, and the co-founder of Moms Who Vax.

"I'll Take Thimerosal"

Once upon a time, when I was still misapplying the precautionary principle, I got very hot and bothered around this time of year. I wanted my kids to get the flu shot, but I had heard so many scary things about thimerosal and how certain of the flu shots still contained it as a preservative that I would grow very anxious. I'd call around, making sure the clinic had FluMist (no thimerosal) or an otherwise thimerosal-free vaccine, and I'd feel very proud of myself for doing my "due diligence."  I even advocated on my now-defunct blog Science for Sale for "demanding" thimerosal-free flu vaccine at your pediatrician's office or clinic.


Now I say to nurses: "I'll take the thimerosal version."

My fabulous vaccinated children (old picture!)

Well, that's a bit of an exaggeration--not to mention a bit of plagiarism on my part (co-founder of Moms Who Vax, Karen Ernst, was the first person I'd ever heard say she asked a nurse for "the thimerosal one" just to make a point). But not by much. Last week, my three-year-old daughter had her well-child checkup. I wanted her to get her DTaP booster early, because of pertussis outbreaks in Minnesota and beyond and because signs are pointing to the current vaccine losing effectiveness sooner than expected. She'll get that booster later this week, but I was able to get her chicken pox booster and her flu shot at this appointment. When the nurse came into the room with the syringes, she looked at me and said, almost apologetically, "We don't have any thimerosal-free flu shots right now." To me, this was about as meaningful as hearing at Starbucks "I'm sorry, we're out of whipped cream today."

It was only later that night that I marveled at how far I'd come since those days at the Target clinic when I fretted over my older child's flu shot. I've come so far because I finally understand how vaccines actually work, how their components work in our body, and how leaving my child even a "little unimmunized" is a serious health risk--one I'm no longer willing to take. (Risk analytics is a subject I wish I'd studied up on earlier in my parenthood.)

For those who don't know, thimerosal is a preservative meant to keep the vaccines safe. If vaccines didn't have preservatives, then you'd really start seeing some "vaccine injuries." The CDC states that thimerosal is "added to vials of vaccine that contain more than one dose to prevent the growth of bacteria and fungi in the event that they get into the vaccine." If you've been following the news, you are probably keenly aware that fungi in injectable medicines is a bad thing--just ask the hundreds of meningitis victims trying to get well right now. However, thimerosal is in almost no childhood vaccines anymore--not MMR, not DTaP, not Hep B. The multi-dose vial of flu shot is really one of the only shots that might contain thimerosal.

When people express concern about thimerosal, they often use the overarching term "mercury." These same people (and I was one of them) almost never know that there is a huge difference between ethylmercury and methylmercury. Some of us (ahem, me) didn't even know there was a difference at all. Even though they have similar names, they are completely different materials. Worth repeating: completely different materials.

The one that people often think of when they hear the word "mercury" is methylmercury. This is the stuff that can be found in certain types of fish, formed in environments where mercury metal exists. High levels of methylmercury can be harmful to the human nervous system, and although federal standards try to control the level of mercury in foods and environments, the truth is we are all exposed to some methylmercury. It's this--methylmercury--that too many people think is part of the thimerosal preservative.

It's not.

The multi-vial dose of flu vaccine contains trace amounts of thimerosal, which contains ethylmercury, which does not "build up" in your body like methylmercury and is easily excreted. It is worth repeating that methylmercury and ethylmercury are different chemical compounds. As the WHO states, "The half-life of ethyl mercury is short (less than one week) compared to methyl mercury (1.5 months) making exposure to ethyl mercury in blood comparatively brief. Further, ethyl mercury is actively excreted via the gut unlike methyl mercury that accumulates in the body." If you need any reassurance or your own personal "chelation therapy" following a visit to the National Vaccine Information Center, take a look at this study from the New England Journal of Medicine that shows ethylmercury having no neurological effect on children who received vaccines with a thimerosal preservative. (There are two more.)

But this is mostly academic, because thimerosal was taken out of the vast majority of childhood vaccines a while ago at the request of the CDC. This wasn't because thimerosal is dangerous. Instead, it was done--against the protests of science-minded organizations--because the CDC feared the anti-vaccine movement had simply poisoned too many minds in their completely erroneous and harmful accusations of some sort of link between thimerosal and autism. The CDC removed thimerosal from vaccines as a preservative because they wanted parents to continue vaccinating and were afraid that the misinformation about it was too entrenched. It was the first time in recent history that science bowed to pseudo-science in this way.

So when I get my flu shot without even wondering if it contains thimerosal or not--when my child gets a flu shot that contains it, even though it's becoming harder and harder to find a thimerosal-containing flu shot--a little part of me feels like I'm standing up for science. Because I am.

Moms Who Vax: "Slow-Vax" to Pro-Vax

By Melissa Clark

As parents, we are faced with making many decisions. It can seem overwhelming. We are bombarded with information and advice from other parents, friends, the media, doctors—the list goes on. When I was pregnant with my first child three years ago, I knew I wanted the way I parented to fall somewhere on the attachment theory continuum. I hoped for a natural childbirth, planned to breastfeed, to use cloth diapers, to wear my baby, to co-sleep—you get the idea.

I thought one of the decisions I needed to make was whether or not to vaccinate my child. As a nurse, I understood the importance of vaccination, but as a soon-to-be new parent, I fell prey to the “toxins” argument. So I did what any well-intentioned parent would; I began to research vaccines. I turned to Dr. Sears’ Vaccine Book and decided that I would follow his delayed vaccination schedule. I knew that vaccines were important, but I thought there was a “safer” way to administer them to my child that would minimize her risk of exposure to toxins.

Fast forward a couple of years, and I am pregnant with my second child. One morning I saw a post on Facebook in regards to the flu vaccine. It claimed that the vaccine contained aborted fetal tissue. In my head I knew that didn’t sound right, and a simple internet search revealed that I was correct, vaccines do not contain aborted fetal cells.

It was at that moment I realized that if that article was false, what other beliefs about vaccines that I held to be true were actually false? My thinking started to shift. I began digging deeper into the issue of vaccines and found that, in fact, I had been duped by fear. I had bought into the scare tactics. I trusted the opinion of one man, instead of the scientific evidence proven by many.

I felt like a selfish jerk because I realized that not only was my decision to delay vaccinating my daughter arrogant, but even worse, that decision could have had deadly consequences for my daughter as well as other children. Never had I been told that my decision to alter the CDC vaccination schedule myself could cause harm to someone else’s child.  

I also felt guilty for spewing the scare tactics and biased information to other parents, thus potentially influencing their decision to vaccinate. After that lightbulb moment, I knew that I would vaccinate future children on time, according to the CDC schedule; I also began getting my daughter caught up on the vaccines that she was missing.

As my attitude toward vaccines changed, the question came to mind “when did vaccines become a choice?” When did it become okay to purposely expose our children to vaccine-preventable diseases, like chickenpox? Why is the loud voice of the anti-vaccine movement often the only one parents hear when they turn to various media and social outlets for information?

I wish I had the answers. What I can tell you is that I know how easy it is for an educated, well-intentioned parent to be swayed by fear and misinformation. I can tell you how easy it is to see the fear- mongering for what it is once you are presented with scientific truth. Yes, as parents we are tasked with making many difficult decisions on behalf of our children; however, vaccinating is not one of those difficult decisions. The ramifications of not vaccinating your child are not contained within your family; they threaten the safety of public health. So, once you are confronted with the truth of science, what will you do?

Melissa Clark is wife to an amazing husband, and mom to two awesome kids. Her educational background is in nursing, and she is a doula and Lamaze childbirth educator. She enjoys coffee, the Internet, and a sparkling kitchen sink.

What Middle Ground?

By Karen Ernst

This morning OCWeekly published an article about self-declared vaccine expert and pediatrician to the stars, Dr. Bob Sears. The article, titled “Dr. Robert Sears Takes on Both Sides of the Great Vaccination Divide: The author of 'The Vaccine Book' presents his own alternatives to the CDC-recommended schedules,” is mostly a discussion about reasons that Dr. Sears promotes his own vaccine schedule, available in his book. 

The problems with the article and with Dr. Sears reveal themselves in the headline.  We absolutely cannot allow the media to portray vaccination as something with a “divide” or “middle ground.”  While he-said, she-said journalism works for enticing readers and create buzz, it does an incredible disservice to public health.  So, while the article notes, “For years, the issue seemed to be black and white—moms and dads either gave kids all their shots or were ostracized by doctors and their communities. But now concerned parents are discovering what they see as refreshing middle ground,” this middle ground is, in fact, not refreshing.  This is ground that is risky and fraught with consequences, such as potential illness and additional procedures in the case of emergency. 

And Dr. Bob's waiting room is a prime example of the risks associated with delaying and skipping shots.  Dr. Bob's waiting room was ground zero during a measles outbreak, which originated with one of his unvaccinated patients who had brought measles from a vacation in Switzerland. (Click here for a photo of a child with measles, a disease whose seriousness anti-vax activists and fringe celebrity practitioners like Dr. Jay Gordon have consistently downplayed.) Yet, half of Dr. Bob's patients remain in this risky middle ground, according to this OCWeekly article: “Roughly 25 percent of his patients do not vaccinate, and another 25 percent partially vaccinate.”   

Clearly, Dr. Bob does as good of a job talking patients out of vaccinating as he does talking them into it.

Why does he continue to endanger the health of his patients?  “Sears sees his role as a bridge between the medical community and those skeptical of it, declaring that vaccinations don't have to be an all-or-nothing decision.”  However, how does one reconcile the idea that vaccines are bad, but I can do some of them?  Or that the CDC doesn't know what it is talking about, except with these vaccines that Sears, as someone with no background in immunology, likes? 

When asked about vaccines, Dr. Bob does not seem to describe them in a positive light: "There are chemicals such as formaldehyde. MSG is in some vaccines. There are chemicals that are very similar to antifreeze. Some flu shots actually have a spermicide used as a preservative. But they're all in tiny amounts, and I believe they're probably safe because they're in such tiny quantities."  He has an addendum at the end about the quantity of various ingredients, and most people with a basic understanding of chemistry know that the dose makes the poison.  However, he equivocates this position, claiming they are “probably” safe.  This statement is utter falsehood.  The ingredients found in vaccines, as well as vaccines themselves, have been studied exhaustively and proven safe.  Thus, his suppositions about ingredients fall into the category of fear, uncertainty, and doubt.

The ingredients are not Dr. Bob's only issue, though. "He also had an issue with the way vaccines are approved by the government. When a medical manufacturer makes a vaccine, a panel of doctors at the Food and Drug Administration must decide whether to approve it. Doctors on that panel might own stock in the vaccine manufacturers or even work for the vaccine manufacturers.”  This point may seem valid, if the FDA were the only check in place for vaccine safety.  However, the CDC and the ACIP also review vaccine data and studies, and they are the ones who make the schedule we all follow, which is supported by the AAP and the AAFP.  The system of nepotism that Dr. Bob alludes to is simply nonexistent, unless millions of doctors--uncompensated, by the way-- are in on it.


You would suppose that Dr. Bob just wants to give parents information and let them decide for themselves what to do.  However, “he continues to be an advocate for parents who want choices, and at the moment, that includes fighting against Assembly Bill 2109, which would require parents to obtain a doctor's signature before they can enroll their child in public school if they wish to skip one or more vaccines.”  In other words, he would rather have parents self-educate than seek appropriate information about medicine from an expert in medicine.

Dr. Bob's advice, as always, is to hide in the herd. "Right now, enough people are vaccinating that the herd immunity of our nation is not being compromised yet," he claims. However, he may have missed that vaccine preventable diseases, like measles and pertussis, are coming back.  He may have forgotten the measles outbreak of 2011, but 222 people who contracted it, and the third of them hospitalized with measles, have not forgotten.  Highly contagious diseases like measles and pertussis are merely signs of what is to come if we do not raise our vaccine rates.

"You can argue with these parents that the decision they're making to not vaccinate is bad for public health, but most parents are trying to make a medical decision that's best for their baby," Sears says. "I think we're all selfish when making any decision for our own children. I can't fault parents for thinking that way."  That true, Dr. Sears.  But I can blame you for supporting and promoting this way of thinking.

Karen Ernst is a mother, teacher, and vaccine advocate. She is the co-founder of Moms Who Vax.

"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.