"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. 

Perspective Saves Lives

Why, some people ask, are the real-life stories of parents and children whose lives have been damaged by vaccine-preventable diseases passed on to them by unvaccinated children more "valid" than stories of children and adults who had reactions to the vaccines themselves. The easy answer is they're not. They're not more valid. They're different.

They're different because of the way they are presented. Individuals, like Barbara Loe Fisher from the National Vaccine Information Council, present stories of vaccine side effects like they are common reactions to vaccines. The truth is that the reactions she describes, and that other parents post about, are exceedingly rare. In fact, children and adults can have similar, sometimes even worse, reactions to routine medications, like antibiotics. I've told the story before about the time my then-four-month-old daughter was hospitalized with RSV-1. It was moving so aggressively into her lungs that she now had bacterial pneumonia. The doctors gave her a large dose of antibiotics, via syringe, right there in Urgent Care. With her labored breathing and her tiny little chest heaving, I did not hesitate. Not for an instant.

Since that night, I've often wondered if a parent who chose not to vaccinate out of fear of side effects would have hesitated in my position. If they allowed their child to receive the antibiotics, why? The list of potential side-effects to that particular shot of antibiotics, and all other antibiotics are similar, and vastly more common, than side effects of vaccines. And if this hypothetical non-vaccinating parent wouldn't give her child that antibiotic shot if she were in my position, well...god help them. Bacterial infections don't usually heal themselves.

In reality, no parent, no matter her position on vaccines, would choose not to save her child and walk out the door (if she did, it'd probably make the evening news, honestly). But that's because the disease is right before your eyes, with your child in its grip. Decisions are easy then. Vaccine-preventable diseases are largely invisible, due to the very success of vaccines. It's not until our child contracts one of these awful diseases, or a friend watches her infant struggle to survive pertussis (see Everlee's story below), that we realize the repercussions of our choice whether to vaccinate. By then, it's too late to do anything different. I didn't want to be too late because I didn't have perspective, like this: the medical journal Pediatrics reported that more than a half million children in this country have bad reactions or severe side effects from widely used medication--many of these reactions required hospitalization. The medicines/injections most frequently causing severe reactions? Pencillin and other antibiotics. Five percent of children were sick enough to require hospitalization. Vaccines are mentioned nowhere in this article.

So there are no circles being run here, no parents swapping anti-vax story for pro-vax story, no one-upsmanship. There is simply a difference.  New and expecting parents are sold a bill of goods that, among other things, equates the potential side effects of vaccines with the dangers of contracting the disease the vaccines immunize against, and that is false. I fell for it, too, and wish with all my heart that I hadn't left my son vulnerable to measles, mumps, and rubella for the months that I did. I realized, luckily not too late, that I owed it to my children to gain some perspective on the information I was hearing.

By the way, another question we get a lot is: what's in it for you? Why are you doing this? We're parents. We have no affiliation with any organization. We write this blog from our homes. We gather the stories of other parents. We receive little or no hate mail from anti-vaxxers (although our friends in public health get a lot of it) because we're hard to attack in an effective manner. We are not "pharma shills" (an accusation I hear from time to time and which I find endlessly amusing). We garner no income from this work, unlike Barbara Loe Fisher and other big anti-vax names. We are parents who care deeply about other parent's children, no matter who they are. If we have a bias, it's a bias toward protecting your children, whether you've vaccinated them or not. At the end of the day, no matter your decision on vaccines, we are doing the same thing: doing our best to protect our children. We do this work because we don't want another parent to be scared into risking her child's life, and the lives of other children, by not vaccinating--as a few of us here did for too many months.