Wednesday, August 20, 2014

Another Media Failure: Invisible Threat Edition

By Karen Ernst

Despite how feisty I can be, I really do have sympathy for journalists writing about immunization. The impulse to try to please everyone in order to avoid the firestorm must be very strong.

But some stories are clear-cut. Take the documentary Invisible Threat. This documentary was created by high school students as part of a school-sponsored extracurricular project, funded by a Rotary Club grant. When the project was announced two years ago, it was simply going to be about the immune system. But immediately anti-vaccine crusaders pounced, so the students decided--on their own--to take a deeper look into the issue, and the result was a remarkable 40-minute documentary about immunization and the controversies surrounding it.

The release of the film didn’t quell anti-vaccine protests of course. In fact, the protests got uglier with many anti-vaxxers claiming that the students hadn’t even produced the film, that it was instead some nefarious project funded and produced by Big Pharma.

Among those rallying against this high school film project was Becky Estepp, who claimed that she was contacted by CHSTV students two years before the project was conceived. Becky Estepp is the communications director at the Elizabeth Birt Center for Autism Law and Society, which hosts the annual AutismOne conference, and through AutismOne and their friends at Focus Autism, she launched a PR attack against these high school students. I just want to highlight again--these anti-vaxxers launched an attack against children.

The outcry in traditional media has been deafening. Attacking high school students is deplorable and out of bounds.

But hang on. I should qualify the above sentence. The outcry hasn’t been universal. One station local to the students aired the controversy, and then interviewed Becky Estepp, allowing her to make defamatory accusations and innuendos. The journalist left them in the piece unchallenged. The unchallenged accusations included: the children are Pharma Shills; they were pawns of the adults who really made the movie. The news station, the NBC affiliate in San Diego, aired these accusations with absolutely no qualification, fact-checking, or opportunity for the students or their advisors to respond.

That this is a failure of journalism is obvious. But the failure goes beyond false balance. Airing falsehoods and accusations like this is intimidation. The repercussions will affect every child who wants to make a school-sponsored film and gain national attention for such a monumental task. I should not have to explain why a television station giving a platform to an adult seeking to intimidate high school students is wrong.

I wrote an email to the journalist responsible for the piece, Candice Nguyen, as well as her General Manager, Dick Kelley.


Dear Ms. Nguyen,

I am writing to express concern about a recent story you aired about Carlsbard High School documentary, Invisible Threat:

As you noted at the beginning of the story, the students involved in this project were harassed by anti-vaccine activists trying to intimidate them out of doing the project. Once the project was complete, the campaign against these students continued.

So I was shocked that, in your story, you gave air time to one of the activists who worked hard to spread unsubstantiated innuendo in order to discredit these students. Furthermore, you left her unsubstantiated claims unanswered, even though each point she made was demonstrably exaggerated or false. In fact, the anti-vaccine activist you put in the story is a contributing editor of one of the organizations that has campaigned against the students and this film.

I want to emphasize that these students were in high school when they completed this school project. As with all extracurricular activities, these students had adult advisors. When a football team wins the state championship, no one asks why the coaches were there, too, and whether or not the championship was actually won by the adults. If people did raise those questions, no journalist would ever allow those detractors air time without proof of such allegations--especially allegations made against children.

I write a lot of reporters, and I understand the difficulties in reporting about immunization and in wanting to appeal to a very broad audience. However, your piece was the most egregious piece of journalism I have yet encountered because it gave airtime to someone who sought to poison the well against a group of children and had no proof of her allegations.

The only acceptable recourse is to air a full retraction of your segment. Please let me know when you plan on airing such a segment, and I will publicize far and wide your commitment to telling the truth and to protecting children against adult harassment and intimidation.

Karen Ernst
Voices for Vaccines

I sent this X number of days ago. I have yet to get a response.  I will update if I hear anything from the station. It might take many more voices writing in to them for them to understand that such bad reporting is a big deal. Here is the link to the piece, which is still available on the NBC San Diego website. The email addresses are above should you be moved to e-mail your thoughts on the piece.

Thursday, June 19, 2014

"I'm pretty sure everyone on your Facebook page has high-functioning Asperger's": The bigotry of the anti-vaccine movement

By Karen Ernst

This has actually been a great week. I’ve been buoyed by Maranda Dynda’s story of deconverting from anti-vaccine to pro-vaccine over at Voices for Vaccines. Her story reminded me that vaccine-hesitant parents are trying to do what is best for their children and that we can reach them.

But I don’t like to rest for too long after such fantastic wins, so I decided to ask Voices for Vaccines’ members what we could do better by sending out a survey. I knew that anti-vaccine activists would find it, and I knew that it would be easy to dismiss their rankings and their comments. I suspected nothing they would say could shock me. I was expecting the regular pharma-shill-propaganda-evil-reptilian comments that seem to populate the majority of the fervent anti-vaxxer’s vocabulary. I was not disappointed.

The comment about government propaganda was expected. The comment about VFV members being “sociopaths” is important. Keep that one in mind as we go.
I was particularly interested in this latter survey response, because of the sheer anger the respondent exhibited. After reading through her other comments, including one where she said she wanted “to ruin everything your organization touches,” such as a Colorado bill introduced last session that some of our parent-members supported through testimony at legislative hearings, I had a pretty good idea of who I was dealing with.

Voices for Vaccines was actually an important topic for some of the anti-vaxxers at those hearings, with one anti-vaxxer dedicating nearly all of her testimony at those hearings to poisoning the well against VFV and our members. It would seem that some of the anti-vaxxers are still upset that pro-vaccine parents would dare to become involved in this legislation. We have learned that parent vaccine advocates are deeply threatening to the anti-vaccine movement. In fact, the hearings and the bill were threatening enough to the anti-vaccine movement that an anti-vaccine lobbying group in Colorado, sponsored by the National Vaccine Information Center, became deeply involved.

[Editor's note: At this point in the post, we had included  a photograph from National Vaccine Information Center's Facebook page. Because we do not own rights to it, we have been asked by the Executive Director of NVIC to remove it. The photograph was included in this post to demonstrate how deeply involved NVIC was in the Colorado legislation, and how closely tied it is to anti-autistic language. However, we are sensitive to the fact that the people in the photo, as well as their children, do not want to be associated with this kind of bigotry, and we have removed the photo from this post at NVIC's request. We do hope they will work with us to rout out anti-autistic language and the use of "autism" as a slur.

One other note: while we have chosen to honor NVIC's request that we remove the photo, we urge NVIC to revisit its own photo-sharing and blog-sharing policies, as it has a track record of including photos of individuals associated with Voices for Vaccines, which they had no prior permission to use, such as Sundari Kraft, Paul Offit, Karen Ernst, and Dorit Reiss.]

Anyway, that an anti-vaccine advocate hates a parent-led pro-vaccine group is not shocking. It’s what we all expect, and it’s what we are all used to hearing. In fact, the unhinged nature of their comments is how the anti-vaccine movement helps us out.

But then she did shock me with this:

In case you misunderstand, this comment is meant to be an insult. A reasonable person might miss the insulting nature of this comment because who really cares if all of our members are autistic? To be honest, I’d be honored if our Facebook page were filled with autistic fans, because that would mean that we are doing something right for neurodiversity.

On the off chance that you don’t see the implied insult here, let’s say I replaced the words “has high functioning Asperger’s” with “is homosexual” or “is Jewish” or “is black.” Using such identifiers as a slur is bigoted.  It’s not funny; it’s just hateful. When we think about the harm the anti-vaccine movement causes, we think about the nearly 500 cases of measles spreading across the country, or nurses who refuse flu vaccines in the name of personal freedom. 

But there is another layer of harm--bigotry and hatred toward autistic people. The anti-vaccine movement relies on this deep fear and even hatred, and it permeates their messaging and their fear-mongering about vaccines. Once you peel back the layers, it's a little shocking to see just how blatant it can be.

Monday, May 19, 2014

Big Alterna and the Ties That Bind

By Karen Ernst

Recently, an anti-vaccine blog put together 11 Facts about Voices for Vaccines claiming to show that we are a “front group” for Big Pharma/the CDC. The blogger drew up charts showing the connection between various people (the charts were wrong) and included a map to show how close our fiscal agent was to the CDC (2.6 miles!). Yet, I work in my little (messy) rambler 1,120 miles away from this supposed vortex of evil, busily not being directed or controlled by the Task Force for Global Health, the CDC, Emory, or Big Pharma (or the reptillian overlords).

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All the conspiracy theories and convoluted logic about supposed and unproven influence by the CDC and pharmaceutical companies on a parent-led vaccine advocacy group makes it that much more interesting that the National Vaccine Information Center is indelibly tied to the hugely influential Big Alterna figurehead Joseph Mercola. Unlike any fiscal connection alleged between Voices for Vaccines and the CDC or Pfizer or any pharmaceutical company, the fiscal ties between NVIC and Mercola are factual, and I want to explore them with you here.

If you are a person who lives a normal life and only thinks about immunization when you bring your child in for his well-child check, the National Vaccine Information Center might sound like a good thing. It might sound positive to have information about vaccines in one convenient “center” for the whole nation.  The problem is that NVIC is definitely anti-vaccine. They have even gone as far as promoting a conspiracy theory about high school kids who created a film about immunization in an after school program. (Shockingly, like football and yearbook, this program was advised by adults, thus prompting the conspiracy theory.)

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In addition to the billboards NVIC buys across the United States asking motorists to “Know the Risks and the Failures” of immunization, NVIC also spends a great deal of time and energy opposing a great deal of vaccine-related legislation. They are even opposing proposed legislation that would provide information about vaccines and record students’ vaccination status.

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For an organization that claims it is not anti-vaccine but is rather “pro-informed consent,” opposing information seems odd.

Except that they are anti-vaccine and pro-misinformed consent.

I had assumed for a long time that this was the entire story, until the day (two days actually) the NVIC website went down and in its place:

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If the VFV website went down, I do not know what would appear there, but to be clear, VFV pays for its website from its own funds which comes from individual donors. The Task Force for Global Health is listed as the owner of our domain name because, as our fiscal agent (we are not yet our own 501(c)3 so do not have ready access to our bank account), they actually issued the check using the funds we raised for Voices for Vaccines.

So, which websites does Mercola provide funding for? (A hat tip to the Skeptical Raptor for this next part.)

Most interesting in this list of domains owned by is the number of them selling something. Bath products! Tanning beds! Water filters! Why would someone selling such an odd mish mash of home products care about helping an anti-vaccine organization promote their misinformation?

Perhaps because there is money to be made off of parents who eschew immunizations out of fear of what they see as “unnatural.” Make no mistake, parents seeking natural health alternatives make big bucks for Big Alterna. And Joseph Mercola, the doctor behind, is near the top of those cashing in.


Let’s review: the National Vaccine Information Center claims not to be anti-vaccine, but in favor of informed choice about vaccine, but as an organization they have made documented efforts to make it more difficult for parents to receive information about vaccines. They do not want schools to know who among their students is vaccinated (even in the case of outbreaks), and they do not want high school students to pursue documentary filmmaking about topics that interest them.

I believe Theresa Wrangham or even Barbara Loe Fisher, the women heading NVIC, believe the misinformation they promote, but if they believe they are not anti-vaccine, they are seriously delusional. And if they believe that Joseph Mercola is providing them with a website because he has a heart of gold, they should know that he probably bought that gold.

For a couple years now, I have sat on my slightly-too-tall IKEA chairs at my old computer fielding accusations about my connections to Big Pharma and the CDC, who apparently want to force parents to immunize their children because there’s money in it, and because the’re evil. (Note: you cannot buy tanning beds or supplements from VFV, the CDC, Emory University, or the Task Force for Global Health.) This strange theory is promoted enthusiastically by NVIC.

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And I’m not even sure what that is. Hypocrisy? Willing ignorance? Arrogance? I’m genuinely curious about what drives NVIC’s willingness to schlep out the Pharma Shill gambit while simultaneously being a Big Alterna Shill.

But the public should not be fooled. This isn’t a story of the little guy who is desperately seeking alternative health options in a world of cruel public health bullies trying to take away the little guy’s freedoms. This is a story about a well-oiled, well-funded machine. A machine that wants to keep you scared--that demands that you look at their information but no one else’s. A machine that would harass children and their teachers in order to obscure the truth about immunization and to sell you a tanning bed.

Monday, May 12, 2014

Letter to an Anti-Vaxxer from a Pro-Vax Mom

By Amanda Z Naprawa

I am pro-vaccine.

Vaccines are one of the greatest medical breakthroughs of the twentieth-century.  I believe vaccines  should be mandatory, except for a few very limited exemptions.  That because vaccines save lives. They prevent complications from disease by preventing the disease itself -- complications like blindness, deafness, infertility, paralysis. I am fully vaccinated. My children are vaccinated according to the recommended schedule. We all get flu shots every year.    

I'll say it again and without hesitation: I am pro-vaccine. 

You, on the other hand, are anti-vaccine. You may also be a beautiful celebrity or a best-selling author of childcare books. You may be the president of a "vaccine information group" or the leader of your local "clean living" club. But you are also anti-vaccine.  Please stop referring to yourself as "pro-informed consent" or "pro-safe vaccine" or any other name that tries to hide the truth of your position.

Individuals who urge parents to avoid vaccinating their children based on a slew of myths are anti-vaccine.  If, in the face of dozens of peer-reviewed, scientifically sound studies, you continue to scare parents into believing that vaccines cause autism, you are anti-vaccine.  If you use your good looks and flashy smile to convince parents that vaccines are more harmful than the diseases they aim to prevent, you are anti-vaccine. If you smile benevolently upon chickenpox parties, and mock concerns over the spread of measles, you are anti-vaccine.  If you threaten the scientists and doctors who have worked to create vaccines with bodily harm and death, you are anti-vaccine. If you bully high school students for making a documentary exploring the anti-vaccine movement, then, yes, you're anti-vaccine.

You are anti-vaccine, not "pro-informed consent."  If you were really for "informed consent," then you would push accurate information. True informed consent  requires that the relative risks, benefits and  uncertainties for each alternative treatment option be given to the patient.  When my child gets a vaccine,  my physician gives me an information sheet filled with all the benefits and potential risks of each vaccine.  I vaccinate my child knowing that the vaccine will offer significant protection against serious illness, and that my decision to vaccinate comes with a very, very small risk of some side effects.  I am fully informed.

If you were really pro-informed consent, then you would be giving the true risks of vaccines and the true benefits of vaccines.   You would tell parents --honestly -- that some vaccines carry an extremely small risk of seizure. You would also tell parents -- honestly -- that there is simply no evidence (aside from anecdotal, post-hoc stories) that vaccines carry a risk of autism.  You might tell parents, that you really really hoped that autism could be explained by vaccination (we would all like a simple explanation for autism)  but its not.

You claim to be pro-informed consent.  Informed consent requires that you give accurate, unbiased information necessary to make an informed medical decision.  If you were really  pro-informed consent, you would tell parents that the diseases that vaccines prevent are real. They are scary. They are dangerous.  Yes, many people have had diseases like measles and survived without lasting harm.  But why take the risk? Why let your child suffer an illness that is preventable? In the pre-vaccine era, 400-500 children died a year from measles. Per year. In contrast, 142 people have been compensated for measles vaccine-related injuries over the last eight years.  That's information that a parent can use to make an informed decision about vaccination. That's pro-informed consent.  But that is not what you are about. You minimize the death of children from vaccine-preventable disease by "putting them into perspective."

You are so proud of your accomplishments in increasing awareness of the alleged dangers of vaccination. You have worked so hard to increase the number of states with exemptions to mandatory vaccination. You have tirelessly spread the news that the government cannot be trusted, that vaccine manufacturers cannot be trusted, and that the average vaccine-friendly pediatrician cannot be trusted either.  You have made money, sometimes lots of it, selling the idea that vaccines are dangerous and should be avoided.

There's a name for that. And its got nothing to do with informed consent.

Amanda Z Naprawa is an attorney and graduate student in the Masters of Public Health program at University of California, Berkeley. She believe in promoting immunization through the dissemination of accurate information about vaccine safety. She is the author of various articles, including "Don't Give Your Kid That Shot: The Public Health Threat Posed by Anti-Vaccine Speech and Why Such Speech is Not Guaranteed Full Protection Under the First Amendment." 11 Cardozo Pub. L. Pol'y & Ethics J. 473 (Summer 2013)

Saturday, April 26, 2014

Invisible Threat: Speaking Up

In recognition of the national launch of the Invisible Threat movement on May 1st, 2014 the Moms Who Vax blog is participating in a blog relay to raise awareness of the threat the film explores—the anti-vaccine movement. Each day, a different blogger discusses his or her personal perspective of the film as part of an exciting ten-day countdown to a kick-off event for the film, which will be attended by national legislators at the Capitol Visitors’ Center in Washington, D.C.  You can follow along to find out how you can join us in this movement, arrange for a local screening of Invisible Threat, and continue our fight against infectious diseases.

Karen Ernst

Teenagers are amazing people. If you want to view the world through a lens of optimism and idealism, ask for a teenager’s perspective. My other career--the one I began long before I had children or embarked on my mission to get parents to pitch in and help prevent disease outbreaks--is teaching. I began my adult life as an English teacher and became who I am today because I spent my hours learning along with the teenagers who populated my classroom and my life.

So I am difficult to surprise with news about how incredible teens can be. Stories in the media detailing how these young people are transforming our world through their activism and creativity often feel like merely revealing the spirit of what it means to be on the cusp of adulthood.

But a group of student-film-makers has surprised me. By delving into the world of vaccine-preventable disease and rationally examining the claims of the anti-vaccine movement, the student-creators of Invisible Threat have done what many adults fail to do: discover the objective facts about vaccines. Before all of us pro-vaccine parents go patting ourselves on the back for arriving at the truth about immunization, we need to recognize that these teens have also gone above and beyond what most of us do. They’ve chosen to speak publicly about the importance of vaccination.

Most vaccinating parents are not telling their stories. Some of us are afraid to cause discord in our families and so we don’t speak up. We have looked at the science, but don’t want to start debate because it’s just not our area of expertise. So we remain silent, and by our silence we allow the anti-vaccine voice to be the default voice of parents.

The Invisible Threat filmmakers faced steep challenges when creating their documentary. They came to the topic green: with no experience with any vaccine-preventable disease, and largely unaware of the anti-vaccine movement, they read materials both for and against vaccines. They sought out experts and got their opinions. The interviewed anti-vaccine parents. They discussed among themselves what all the information meant and came to a conclusion that was both reasonable and in line with the scientific consensus: vaccines are safe and save lives.

Invisible Threat follows the evolution of their thoughts on vaccines, but behind the scenes, these students faced the same obstacles that we vaccine advocates face. Lisa Posard, parent volunteer and executive producer, explained that when news about the topic of this documentary first came out, anti-vaccine bloggers wrote about the teenagers. Anti-vaccine activists even called their school to try to convince them not to do the film.

Despite this harassment, the students were adamant that they would not be bullied out of tackling vaccines. These young people have done the hard part, and we can do something easy right now. We can invite our senators and representatives to an event on May 1st at 10am in Washington D.C. to discuss the issues behind the documentary.

Invisible Threat is a fantastic documentary, and we are fortunate the filmmakers had the moral fortitude to stand up to those who were trying to shout them down. Next time we are tempted to be quiet about vaccines because we don’t want to make enemies or because we aren’t up-to-date on all the latest science or because it takes effort and we are busy, we need to remember that making a difference means taking a risk. It might mean we have to hearken back to our youth and our days of idealism, when standing up for something was critically important. And what could be more critically important than the health of our children and our communities?

You have the ability to make a difference in our fight against infectious diseases. Follow the Invisible Threat Blog Relay and find out how you can be a part of the movement. Tomorrow's post will be hosted by MOMentumNation.  And be sure to like the Invisible Threat Facebook  and follow the filmmakers on Twitter @InvisThreat.

Friday, April 11, 2014

And here's what my letter looks like...

In the post below, I urged you to write to Colorado legislators to express your support of HB1288 and to counteract the anti-vaccine rhetoric with which they've been deluged. Putting my money where my mouth is, here is what I've written. It's not perfect, it's not polished, but it's from the heart. Yours can be too!

Dear Senators,

My name is Ashley Shelby, and I am a mother of two. I am moved to write you today because it has come to my attention that you are receiving a great deal of contact from anti-vaccine parents and activists regarding HB1288, which strengthens immunization rules for the state that will protect children and infants, individuals going through immuno-suppressive therapies like chemotherapy, and the elderly from needless suffering. These anti-vaccine activists often refer to their beliefs as having to do with personal choice, personal liberty, informed consent, and other terms that mask the fact that they want the right to not vaccinate their children while still enjoying the public spaces, like schools, where their decision could harm others. To me, anti-vaccine parents who fight against HB1288 are like people who feel it's their right to shout "fire" in a movie theater, a right which has been denied by courts for decades. Your freedom may not infringe on my safety--and that's exactly what anti-vaccine parents are doing, so far without any obstacles thrown in their path. Their "personal liberty" is making it hard for me to exercise my own.

I am speaking up because these individuals do not represent parents. In fact, they are a vocal fringe group, who have an impact because of the nature of herd immunity. Although the overwhelming majority of parents support vaccines, even if five percent of parents choose not to vaccinate, diseases like measles, mumps, and pertussis gain a foothold in our communities. And they have. You are no doubt aware of the measles clusters in California and New York, the mumps outbreak in Ohio, and the pertussis cases all across the country. The majority of these cases started with and were spread by unvaccinated individuals. 

Please help parents protect their children from vaccine-preventable disease by voting yes to HB1288. Parents still have the right not to vaccinate their children--they just can't send them into schools and day cares. Voting no to HB1288 is not a vote for personal liberty. It's a vote that indicates that people can endanger public health with absolutely no consequence to themselves, and all the risk on the shoulders of people who are forced to share a public space with them. 

Thank you for considering my point of view.

Don't Let Anti-Vaccine Movement Sink Colorado Bill

Editor's Note: I made a mistake in my initial post--Colorado is not trying to eliminate personal belief exemptions (I wish)--the bill simply adds an educational component. 

We need your help.

Colorado is trying to strengthen immunization rules by adding an educational component to personal belief exemptions. These exemptions are the manner in which anti-vaccine parents can opt-out of vaccines and still enroll their children in schools and day care facilities, putting children and vulnerable members of our community at risk of vaccine-preventable diseases. We've seen the result of these exemptions: measles outbreaks, mumps outbreaks, devastating pertussis outbreaks that have killed infants.

And while support for the measure is strong in Colorado's House, its Senate is less likely to pass the bill, titled HB 1288, "Strengthening Personal Belief Exemptions for Immunization Requirements."
Part of the reason is because legislators are being deluged by phone calls and e-mails from anti-vaccine activists, purporting to represent parents. What's more, they are framing this debate as one over personal liberty. Missing from their arguments is the idea that with personal liberty comes personal responsibility, something anti-vaxxers do not exercise, and which is harming public health and the communities in which they live. Unfortunately, it turns out that several state legislators have bought into this personal liberty argument--and with the majority of the calls and e-mails they are receiving being from anti-vaxxers, they are more and more likely to vote against this important bill. 

Let's help. One approach is to talk about recent outbreaks of vaccine-preventable disease and how lack of immunization has lead to needless suffering. Another approach is to take apart the personal liberty argument that the anti-vaxxers are now using to stop this bill. Where does personal liberty bump up against the needs of the community--the anti-vaxxers want the right to yell "fire" in a crowded theater. 

The Colorado Senate State, Veterans, and Military Affairs Committee will vote on the bill on Monday.

Once passed by this Committee, as is likely, the bill will be considered by the full Senate. It here that the bill looks to be in trouble, when it reaches the full Senate. 

This is where you come in. Please contact Colorado Senators as soon as possible to urge them to support House Bill 1288. Here is the CO general assembly senate directory:  Colorado General Assembly Senate Directory

Because the majority of calls and e-mails right now are angry anti-vaxxers, all Senators, even the ones who look like they will vote yes, need to hear from you. Encouragement for those likely to vote yes, reasoned and compelling (and personal) words for those likely to vote no. Here is the list of senators we believe are most in need of a call or e-mail.

Senator Cheri Jahn (D); Cap: 303-866-4856 E-mail:
Senator John Kafalas (D) Cap: 303-866-4841; E-mail:
Senator Mary Hodge (D): Cap: 303-866-4855; E-mail:
Senator Jeanne Nicholson(D): 303-866-4873 E-mail:
Senator Ellen Roberts (R)Cap: 303-866-4884 E-mail:
Senator Bernie Herpin (R)Cap: 303-866-6364; E-mail:
Senator Steve King (R) Cap: 303-866-3077; E-mail:
Senator David Balmer (R) Cap: 303-866-4883 E-mail:

If you have any questions, please contact Stephanie Wasserman, Executive Director of The Colorado Children's Immunization Coalition at