They Don't Speak for Me: Why We Must Act Now

As a parent who vaccinates your child, you probably don't know that as you are going about your daily life, parenting, working, doing volunteer work, writing the Great American Novel in your spare time (what spare time?), a very small but vocal army is pounding the pavement in your name.

It may surprise you to know that the anti-vaccine movement has long claimed to speak for parents in this country when it comes to vaccines. And it is because they are so vocal and we are so, well, busy living our lives, that legislators, government officials, and even some public health organizations think that anti-vaccine activists who believe the MMR causes autism and that the decline of vaccine-preventable disease is due to "better hygiene" represent parents as a whole, when it comes to immunization in this country.

The vast--vast--majority of us choose to vaccinate our children for two reasons: one, we don't want our children to suffer from a preventable disease, possibly become seriously ill, or even die; and two, we don't want any of those things to happen to our neighbors either. Here's the problem: we don't talk about it. I suspect this is because we consider it commonsense. One mother on this blog wrote a post titled: "There's an Anti-Vaccine Movement?" because it had never occurred to her before she had children that people would willingly forgo something that has nearly eliminated one of the most dreaded diseases in human history (polio) and saved the lives of countless children and adults from other diseases that, if not kept in check by widespread immunization, cause unimaginable amounts of suffering.

We never thought we'd have to advocate for something that saves lives, especially the lives of children.

But here we are, and our complacency and our silence has allowed a fringe minority to sit at the table of public health in our place. And there are now consequences for our silence. In Vermont, a common sense bill that would make it more difficult for parents to "conscientiously object" to vaccines and still be allowed to benefit from the public school system has been derailed and defanged because of a highly organized counterattack from anti-vaccine forces, led notably by Barbara Loe Fisher's National Vaccine Information Center (a cleverly named anti-vaccine activist organization). In Oregon at this moment, legislators are considering a simple addition to immunization law that would require parents who opt-out of vaccines to receive educational materials about the risks of vaccine-preventable diseases. The fact that anti-vaccine activists objects even to this speaks for itself. These are the fears of anti-vaccine parents who do not want any obstacle in their quest to get their kids in school with the general population while not having to get those kids immunized.

Who have these legislators heard from? You guessed it: anti-vaccine parents and activists. And not just those living in Oregon. They are getting e-mails and letters from all over the country from people who will fight tooth and nail to preserve their ability to opt-out of immunization and keep their kids in school.

Who haven't they heard from? Us. The parents who vaccinate. The overwhelming majority of us who vaccinate our children because it's the right thing to do for us personally (our kids are protected) and because it's the right thing to do as human beings who live in a community (we protect others). We are the parents who likely would not dream of sending our sick kid to school and infecting his entire class. We are the ones who used common sense. And we're sitting back letting people who have chosen fear and lies over evidence and science speak in our names.

If I sound a little more passionate than usual, it's because I'm angry. We must rise up as a group and take back the conversation. We must let lawmakers know where we stand. I think back to my high school civics class, where we were taught that lawmakers take each letter they receive and apply that strange political calculus to it that, in the end, makes that single letter speak for 10,000 people. Right now, there are legislators in Oregon who believe that millions of parents do not believe in vaccination and do not want the law changed to better protect the community. Let's prove them wrong. You can write and voice your opinion on SB 132, the Oregon bill currently in committee by visiting this site from the Oregon Pediatric Society. It will take you directly to a form where you can write your note. It needn't be long--although mine was about four paragraphs--and you don't have to be a citizen of the state of Oregon (although if you are, we really need you). Let's do this--let's go letter for letter, and beyond. Let's make sure the people who make our immunization law know that we are here, that we care, that we are the 95%.

Moms Who Vax: A Response to Rep. Mary Franson

By Karen Ernst

Editor's Note: At a committee hearing in the Minnesota State Legislature on January 30th, state representative Mary Franson made comments about autism and vaccines in an otherwise unrelated discussion about whether insurance companies should be compelled to cover services relating to an autism diagnosis. These comments are representative of Franson's ideas about vaccines, as she has sponsored several bills that would weaken current state immunization rules. Below is parent Karen Ernst's response to Franson's comments.

I’m deeply disturbed by Minnesota State Representative Mary Franson’s comments during the House Health and Human Services Policy committee meeting on January 30, 2013.  While discussing funding for autism services, Franson commented: “As a mother of three children, I am very thankful than none of my children have had to experience autism, or my family hasn't had to go through that experience. But also, I'm one of those parents that no longer vaccines [sic] either because of the fear that I have had talking to other parents that have experienced their child becoming--experiencing autism after what they found, what they believed correlated with the vaccinations.”

I know many children on the autism spectrum.  Their parents are grateful that they are who they are and do not wish for them to be different. Their parents also readily protect their children from diseases prevented by vaccinating them.  The fear of autism is spread along with anti-vaccine misinformation, and neither is based on reality.

Stated plainly: vaccines do not cause autism.  Andrew Wakefield, whose poorly designed study was retracted shortly before he lost his license to practice medicine, has gained much financially in promoting the dangerous and erroneous idea that vaccines are linked to autism, but they are not.  Dozens of studies across the globe have shown that vaccines and autism are not related at all.  The science is settled.

One wonders why an elected representative is promoting both thoroughly debunked ideas about vaccines and hurtful sentiments about autism. Let’s hold our representatives to a higher standard and demand that they be grateful for the existence of all children and that they support measures that prevent potentially deadly diseases.

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.

Consequences--in the language of the courts

Sometimes reading stories about the consequences of forgoing vaccines for one's children can leave a reader feeling like she's not getting the whole story, or is getting one with a "point of view." Sometimes anti-vax activists call these true stories "scare tactics." 

Today, just a short post. A mother in Australia chose not to give her newborn a Vitamin K shot or the recommended hepatitis B vaccine. The baby died from the very blood clotting disorder the Vitamin K shot was designed to prevent. The Office of the State Coroner conducted an investigation into the baby's death. Its report is a fact-based narrative that every parent should read. If you wish to read a completely unbiased account of the consequences of rejecting a vaccine for your child, you will find it in this report, which is heartbreaking in its very matter-of-fact tone.

I will mention one more thing that I found deeply troubling. Some of you may know of Dr. Joseph Mercola, one of the most infamous purveyors of anti-vaccine nonsense. Unfortunately, when a new parent or parent-to-be Googles "Vitamin K newborn" the first link is a video from Mercola touting the "dangers" of the Vitamin K shot. I wish the first link that came up under "Vitamin K" and "newborn" was the coroner's investigation I just read. 

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.