Monday, October 24, 2011

The Incredible Hulk Vaccine Side Effect: Or, Understanding VAERS

By Karen Ernst

Inevitably, in the course of speaking with someone who wants to support her decision not to vaccinate her child, you will be asked to read the VAERS (Vaccine Adverse Events Reporting System) database. Reading VAERS is not inherently wrong or bad. However, before reading VAERS, you should understand what it is and what you will find there.

VAERS is the place where doctors, patients, and really anyone else can report what they suspect to be side effect of a vaccination. The CDC and the FDA co-sponsor this data base, and they use it to monitor possible vaccine side effects. When certain patterns or clusters of similar reports appear, public health officials investigate these events and make appropriate recommendations. For example, in 1999, VAERS caught a higher than expected incidence of intussusception—a bowel disorder—following adminstration of RotaShield, a rotovirus vaccine.  Epidemiological studies confirmed the heightened risk of this side effect, and the vaccine was pulled from the market.

In this sense, VAERS is invaluable. It gives public health officials the information they need in order to keep our immunization program as safe as possible. As a parent, I take comfort in the fact that VAERS exists and that people who know how to analyze the data are on top of it.

However, VAERS is a passive reporting system. This means that anyone can report anything to it. There is no go-between. It’s almost like an online forum or message board; anyone can post and no one vets the claims. As such, a report in VAERS does not prove that any adverse event was actually caused by vaccines.  In fact, it doesn't even prove that any reported adverse event actually existed. One of the more well-known examples of how any report makes it into VAERS was Dr. James Laidler’s report that the influenza vaccine turned him into the Incredible Hulk. He inspired Kevin Leitch from Left Brain Right Brain to report a similar Wonder Woman adverse event. 

Of course, those examples are a bit tongue-in-cheek. There are other events people submit, however, which can be taken no more seriously.  For example, here is one reported event, taken word for word from the VAERS data base:

“Information has been received from a nurse practitioner concerning a patient’s nephew, a 17-year-old male consumer who she "thought" was vaccinated with a dose of GARDASIL (lot number not provided) in November 2010. The nurse practitioner stated that two weeks after the patient received the dose of GARDASIL, approximately November 2010 (also reported as "two weeks ago" on approximately 01-APR-2011), the patient died of sudden cardiac death on the lacrosse field. Unspecified medical treatment was given. It was unspecified if any lab diagnostic test were performed. The cause of death was sudden cardiac death. Sudden cardiac death was considered to be immediately life-threatening and disabling by the reporting nurse practitioner. Additional information has been requested.”

In this third-hand report (a nurse practitioner reporting about the nephew of a patient), VAERS cannot even confirm whether or not the deceased ever received the vaccine in question. In another very sad report, suicide (following a history of suicidal ideation) is blamed on a vaccine: “Known chronic depression, she elected to stop her medications when she turned 18. Committed suicide 04/28/11. Hung herself.”

Other similar reports are made here at the well-known anti-vaccine site National Vaccine Information Center. Included in this one page of the VAERS data base are people who read something on the internet and made a VAERS report.  Sometimes the same person made multiple, similar, vague reports. That bereaved parents and concerned others make reports to VAERS is not troublesome, even when these reports may be dubious or even fraudulent.  Epidemiologists and public health experts know how to wade through the overwhelming amount of information in order to determine the safety of our vaccines.
But the anti-vaccine movement relies heavily on the VAERS data base to frighten parents away from vaccines, and this is extremely troublesome. 

VAERS does not prove causation, or even correlation, when it comes to side effects and vaccines. Parents would be far better off trusting their doctors who have examined the studies done to ensure the safety of the vaccines we use to protect our children. As parents, it’s easy to be scared off vaccines by reports of “vaccine injury.” However, when making a decision as crucial as this one, we must know where our information comes from and the truth behind the way it is presented.

Friday, October 21, 2011

Story by Story...

I had the privilege of meeting Brendalee Flint at the Minnesota Department of Health's annual immunization conference. I watched as she told the story of her daughter's experience with contracting meningitis from an unvaccinated child (even though Julienna had been vaccinated herself) twice. The story is one of the most difficult I've ever heard. This child almost died, and her mother's heart with her. With Julieanna, the vaccine didn't take because of an immune problem, so she was unwittingly relying on the community's herd immunity, on other parents vaccinating their children against this evil, ugly, fast-moving disease. Except other parents didn't vaccinate their children, and fifteen-month-old Julieanna nearly died.

This is scary, but it's not a scare-tactic. If the anti-vax movement is anything, it is nothing but scare tactics. If you are making your own vaccine decisions about your children, please take the time to read Brendalee's incredible story and about her daughter's remarkable recovery. I had the honor of looking at lovely Julieanna for an hour during today's parents' panel. In terms of gathering information, if we are capable of hearing the "vaccines are toxic" or "they turned my child autistic" stories, we are capable of looking at the other side and reading the stories of what can happen when we choose not vaccinate. To turn away from these stories is to be dishonest in our decision making. We all want what's best for our kids, and that means making an informed decision about vaccinating. Julieanna will help you make an informed decision. Promise.

Brendalee Flint's Story

The Google Conundrum

As a new parent, I did the same thing every single parent in my state, probably in the country, did before bringing in my kid for his vaccinations: I googled "vaccines." Big mistake. There were no obvious signs that I had fallen down the rabbit hole. In fact, I was directed to some very official looking websites, one of which was The National Vaccine Information Center.

National Vaccine Information Center. That sounds official. And I need information on vaccines. Great. It took me a while to realize that the site I was visiting belonged to an anti-vaccine organization. (As Dr. Ari Brown pointed out during this weekend's Got Your Shots immunization conference here in Minnesota, you always want to get your vaccine information from a website that has a scrolling ad for lawyers on the margin of the page, right!) Then there's the Vaccine Safety Council. Again, sounds official. And I want safe vaccines. Let's head on over there and see what gives. And so began some of the most stressful months of my life, becoming scared of harming my son with vaccines, coming to realize, through research, that I had been sold a bill of goods by the anti-vaccine community, and was in danger of putting my son's life at risk if I didn't vaccinate. Somehow I climbed out of that rabbit hole and got back on steady ground.  I know other parents face the same terror I felt after doing that first Google search, so I want to provide some basic information here in the hopes that it can be a kind of Cliff's Notes for you or new parents you know who are doing the vaccine thing. As new and expecting parents, the last thing we want and, frankly, have time for is examining verbiage, nuance of language, and point of view on websites we come across during a 2am Google search between nursing and changing a diaper. What I learned was that I could not take anything for granted--I could not assume that seemingly straightforward, unbiased names like "National Vaccine Safety Council" or "Vaccine Information Center" were providing factual information. Notice that none of these sites call themselves "The Anti-Vaccine Clearinghouse" or "Moms Who Don't Vax." They refer to themselves as people desiring "safe vaccines" (hint: we already have them) or "more research" (hint: the research is in, and it's conclusive).

I want to provide some shorthand for you sleepy parents out there who want to know about some of the sites you find during a Google search. Please note: I only list the first five notable anti-vaccine sites that appear in a Google search for "vaccines" here. I'm happy that the CDC's site, the Children's Hospital of Philadelphia (CHOP)'s site on vaccines, and other credible sources are appearing higher and higher in this particular Google search. But in the meantime, if you are a new parent, please know this about the following websites you will encounter on your Google adventure.

1.) National Vaccine Information Center: Anti-vax organziation run by an anti-vaccine activist named Barbara Loe Fisher. Unfortunately, this is currently the third or fourth link that shows up under a Google search for "vaccines." To get a sense of what these folks are about, check out this story from Discover Magazine online.

2.) SafeMinds: Anti-vax organization run by another anti-vaccine activist named Sallie Bernard, former marketing executive. Left Brain Right Brain, a science blog, says this about the organization:

"SafeMinds has shown themselves to be very resistant to the very research they called for. Studies which show a lack of association between thimerosal containing vaccines (TCV’s) and autism are always rejected by SafeMinds. They are not alone in this, groups such as Generation Rescue and the National Autism Association(NAA) have also refused to accept the science.
Incidentally, one of the hallmarks of the anti-vax movement is an astonishing level of defensiveness. This is a trait you will rarely see (I've never seen it) in the pro-vax movement. Perhaps this is because we have nothing to be defensive about. You will also not see vindictive attacks on anti-vax activists from public health authorities and pro-vax parents, like this one Safeminds perpetrated on one of their pro-vax critics, a parent. Acts like this should go into your consideration of whether a source is trustworthy enough to earn your confidence.

3.) Association of American Physicians and Surgeons: a very official and "medical-sounding" organization that is anti-vaccine. For a detailed explanation of this organization's approach, please go to Science-Based Medicine's post on it. Shorthand: they had disgraced former doctor Andrew Wakefield speak at their conference.

4.) Natural Sadly, some parents look to this website as a source for medical information. It is notably anti-vaccine and has no problem providing "medical information" suggesting vaccines cause harm that is, frankly, nothing but lies. Even if you've never taken a science class in your life, you will quickly see through the stories posted on this very odd website. To give you an idea of how poor of a grasp the folks who run this website have on basic science, one of their recent headlines was: "CDC admits flu vaccines don't work (which is why you need a new one every year)" I nearly spit out my coffee when I read that one. It's astounding that these people don't understand that new flu viruses arrive every single year and that the vaccines are manufactured to guard against the new strains. They also claim "multiple studies" show mercury causes autism, something even most anti-vaxxers are now moving on from.

5.) this site has become very stripped down, but it still directs you to "vaccine adverse events," which is a somewhat unmonitored reporting system that collected all reports of perceived vaccine-related illness or injury. I hope to have a post from someone far more knowledgable than me on the VAERS (Vaccine Adverse Event Reporting System) set up by the U.S. government, and how it works, but long story short, someone can report (and apparently has) that their son got a vaccine and then turned into the Incredible Hulk, and that will be part of the VAERS reports; no causation is needed, just a report, even something overheard. I've read reports of a teenager receiving a vaccine, then thirty days later committing suicide, and it being part of VAERS because the reporting party wondered if the vaccine caused her suicide. Anyway,, despite the official-sounding name, is an anti-vaccine website.

6.) Vaccine Exchange: I honestly wouldn't have known about this site if the person running their Twitter account hadn't Tweeted us with some nonsense accusing us of not liking National Vaccine Information Center because we are cockroaches who scatter when light is shined on "the truth." (Because insults like this coming from  a site purporting to provide unbiased information about vaccines always inspires confidence in the site's usefulness.) Vaccine Exchange is just another site promoting an anti-vaccine agenda and using scary stories and misleading language to dupe new parents into buying into their stories. There's a lot of talk about "informed consent"--which has become shorthand for "antivax," because patients who choose to vaccinate their children are both informed (to the nth degree, actually) and have given their consent. You'll see stuff there about "Scientists Under Attack" and the fact that parents from West Virginia "have no right to decide what is injected into their children." If their overblown, meretricious prose doesn't tip you off, their poor web design might.

These are just a handful of the sites you might come across in a search on vaccines. Please take a look at the links on the right of this page for credible, science-based information on vaccines, as well as a few blogs from really smart people who do this infectious disease/immunology thing for a living. For a readable, accessible, but penetratingly intelligent--and accurate--account of the groups named above, please read "Yet Another Bad Day for the Anti-vax Movement in 2011" on the science blog Respectful Insolence.

I also want to point out one sad fact that I've had to come to grips with, and that is that the board, for all its attachment parenting, breastfeeding, and "natural mama" support, is mostly an anti-vax board. You'll see a lot of links to books by anti-vaccine activists, and lots of justification for their reasons for not vaccinating. And once in a while you will see a valiant soul trying to coax them into using science. But I would warn any new parent away from this particular resource, as the rampant misinformation and scare tactics you see in the comments are not worth the trade-off for breastfeeding tips and lists of paraben-free baby products. 

Tuesday, October 11, 2011

Telling a Better Story, Telling the True Story

I have heard the success of the anti-vax movement described as a victory based on the fact that they tell a better story.

I take that to heart.

The truth is that the most persuasive, effective means of communication among parents is not the research paper, it’s not the newspaper, it’s not even the pediatrician: it is the anecdote. It is the story shared between parents. It's how we learn how to soothe a fussy baby. It's how we figure out which baby bottles work best. It's how we know what kind of diapers to use, what day cares or preschools to try. It's often how we choose our pediatricians. Anti-vax activists, having no science to lean on, have wisely chosen to utilize the anecdote to keep parents from vaccinating. Let me give you an example. 

They tell parents this: My son was a bubbly, happy one-year-old. Then he had his MMR vaccine and the next morning he was autistic. 

It’s an excellent story. It's a horrifying story. It suggests a kind of dark, chaotic danger at the end of a needle. And it has worked. It doesn’t matter that it’s not backed up by science or fact. Most scientific debates have a healthy amount of replicable research on both sides. Not this one. And still, this anecdote has resonated across the country.

The medical community and public health authorities have been slow to respond, not because they're slow, but because they have been unable to understand why firm science and the reassurances of replicable science, clinical trials, and wide-ranging research has not quelled this fear. The anecdote is anathema to the medical community, which is why it hasn’t occurred to them, until recently, to use it as a tool in this fight.

 It’s time for pro-vax parents to begin telling their anecdotes. We have an advantage because we have anecdotes—and we have science to back it up. It’s a powerful combination, and it's time to put it to use.

Many people have asked me why, as a parent who vaccinates, I care about immunizations as much as I do. The answer is easy. I live with the guilt of having put my son at risk, for three months, of contracting a potentially debilitating, deadly disease because of a very sophisticated, well-told lie I discovered during my "research" on the internet as a new mom. My son was set to get his MMR vaccine at twelve months. I delayed it until he was fifteen months. And if I had not had my own come-to-Jesus moment during those three months, realizing that my son could die because of an unfounded fear I had of vaccines, I can’t tell you when I would have vaccinated him. In those three months, he could have been one of the children infected with measles. He could have been hospitalized. He could have died. And it would have been my fault for basing a decision on a story that I’d been told, one that had no basis in fact. It would be impossible to continue living.

When I realized this—luckily not too late-- I got angry, the same way I’ve been angry at lies that affect my life in the past. For several years, I was a journalist who focused on corporate misdeeds; I took issue with pharmaceutical companies, how many of them paid for research to show their products were harmless. But none of the machinations I investigated as a journalist can compare to the outright fabrications I’ve come across in this anti-vax movement, which targets vulnerable new parents who want nothing more than to keep their children from harm.

When the public health authorities and pediatricians challenge the claims, they are, unfortunately, unconvincing. And it's not their fault. The anti-vax movement has sowed suspicion among parents of a doctor’s true motives. For doctors who have seen vaccine-preventable diseases ravaging a child's body, or even killing a child, vaccines are a no-brainer. I think very few of them have ever googled “vaccines” and “vaccine safety” to see what, exactly, it is that parents find when they do this search—as ALL of them do. If they did this, they would know what they are dealing with and they could address it head on.

It's time for parents to begin working with medical providers and the public health authorities to reframe this discussion and to harness the power of storytelling. New parents are also in desperate need of context and perspective. They need to know that a breastfed baby gets seven times more aluminum in the first six months of breastfeeding than she'll receive in the whole course of childhood vaccines. They need to know that vaccines have side effects and potential complications--that are as similar in the former and rare in the latter as any number of commonly prescribed medications.

An example: My one year old daughter was wheezing after having a cold for a few days. I took her into Urgent Care. The doctors became concerned that she had pneumonia. Turns out, she had bacterial pneumonia and she was hospitalized. I grew terribly afraid. Here was this impossibly tiny child on my lap, with an oxygen mask on, dealing with a serious infection. “We’ll need to give her a shot of antibiotics,” the doctor said. “It burns a little; it’s not comfortable.”

Did I think twice?


Side effects include much the same side effects as a vaccine. Did I think twice?


Now, if I had looked up antibiotics on Google before deciding to let my daughter have this shot, as I did before scheduling my son's vaccines, I would have discovered an FDA report that read: “Increased risk of death with Tygacil antiobiotic compared to other antibiotics used to treat similar infections.” Would I have hesitated to let her have the shot? Probably.

But I didn’t have that luxury. Her increasing illness and the possibility that it, itself, could lead to death, trumped all of that. The thought that I would deny my child a medicine that could ease her suffering, possibly keep her from getting worse, never crossed my mind. To do otherwise would have been criminal. I wonder if I would have even been allowed to leave the clinic without it.

And yet a vaccine is just as important as this shot my daughter had. The difference is that your child is not yet sick; you are protecting the child from becoming sick. And so the impetus is not there. I often ask vax-hesistant parents if they were in my situaton, with a child suffering, if they would have refused the antibiotic shot because there were risks involved. No one has said yes.  

Let's start telling our own stories. Let's tell parents why we vaccinate. Let's step into this dialogue, let's take it over. Let's start telling the better story. The true one.