Vaccines Should Remain Parental Choice, Not Law

Parents have the right to educate themselves about the benefits and risks of vaccines before making a decision for their child.

My daughter was 10 months old when I noticed something different about her. She had always been a very high-intensity baby, requiring constant movement and holding, but it wasn't until just before her first birthday that she began head-banging in her crib. Though her pediatrician assured me these were normal behaviors, I felt vaguely disquieted.

Four years later, my daughter was diagnosed with autism. After the dust settled, I became determined to learn as much as I could about her diagnosis, and leapt at the opportunity to attend a national conference that featured some of the world's most respected geneticists and authorities on autism.

I didn't go into that conference blaming vaccines for my kids' autism—and I didn't leave it blaming vaccines, either. But I was surprised that not one of the speakers recommended administering any further vaccines to children with autism. Some even recommended withholding vaccines for their siblings.

Regardless of their varying approaches, the unifying message was clear: Vaccines were something to view with extreme caution in children with autism. Not because vaccines "cause" autism per se, but because some children with autism suffer from everything from impaired cellular detoxification pathways to methylation defects that make them more susceptible to vaccine injury than other children.

Autism isn't the only disorder that can be tied to impaired vaccine tolerance. Not long after the autism conference, I attended a symposium for mitochondrial disease physicians and patients—of which I am one. There, too, vaccines were discussed with caution. I was told that many patients with inborn errors of metabolism like mine don't form proper immune responses to vaccines, and that measurements taken following vaccination show that they simply aren't effective in those patients.

Yet to date, no comprehensive study has been performed on this vulnerable patient group to test the efficacy or safety of vaccines.

Thankfully, the National Institute of Health is currently recruiting for a study that will examine exactly that. But studying it in the inborn errors of metabolism population is only the first step toward applying those findings to others whose chronic health conditions—such as asthma, diabetes, or even autism—result in similar cellular dysfunction. It could be decades before effectiveness and risk in the broader chronic disease population is really assessed.

Lawmakers Step In

Meanwhile, lawmakers in my home state of Washington are considering a bill that would remove vaccination exemptions from public schools. If this bill passes in Washington—or in one of the other 13 states considering similar legislation—lawmakers, rather than parents and physicians, would decide who receives vaccines and who doesn't.

The reasoning behind these bills is simple: Vaccines save lives and vaccine exemptions risk lives. But vaccination rates are already increasing by 10 to 11% per year. Overall, the vaccination rate for all recommended vaccines combined is more than 70%, and the vaccination rate for individual vaccines like measles is upwards of 95%. Even without removing existing vaccine exemptions, vaccination efforts are working.

Unfortunately, this push toward 100% vaccination has also illustrated that some of our vaccines simply do not work as well as we thought. The pertussis vaccine, for instance, has recently come under scrutiny for providing a much shorter period of immunity than originally believed, and as many as two-thirds of patients who later contracted pertussis were fully vaccinated.

To further complicate matters, the FDA has called for more study into the vaccine itself as the cause of increased numbers of pertussis outbreaks. If vaccines can spread disease, wouldn't increased vaccination rates result in increased numbers of the very diseases that we are trying to prevent?

Despite the media frenzy over the current measles outbreak, measles isn't exactly a death sentence in well-nourished countries like ours. In fact, according to the CDC, there was an average of 13 deaths per year between 1987 and 2000, a death rate of 0.3%. Even in the 1950s, when measles hit a nearly 100% penetrance rate in childhood, it resulted in about 500 deaths annually. By contrast, the NTSA reports that more than 1,500 children between the ages of 0 and 14 die in car accidents per year. Even without a single vaccine being given in the entire country, measles would still be less likely to kill your child than your car.

And even if your child did get measles, it would be unlikely to have originated at school: In 2013, the CDC tracked the origin of 99% of measles cases back to adult patients traveling to countries with active outbreaks. None of those outbreaks would have been prevented by removing school vaccine exemptions.

We can also be too quick to assume the government is equipped to reasonably regulate science. Don't forget that in the Renaissance, Galileo was tried and later sentenced to house arrest for asserting that the Earth rotates around the sun.

A Parent's Rights

Although the risk of vaccine injury might be minimal, it exists without question, and parents have the right to educate themselves about the benefits and risks of vaccines before making a decision for their child. Until and unless science can provide conclusive data about vaccine risk and efficacy, based on rock-solid studies performed on individuals with chronic health conditions ranging from common to rare, no one is in a position to mandate a one-size-fits-all vaccine policy.

While the average time it takes to diagnose many genetic diseases is 7-10 years, the vaccine schedule begins at birth. As a result, our current approach to vaccination simply does not account for anyone but those born with optimal health. Even as science continues to push forward with individualized and personalized medicine, based on everything from sequencing our genes to exploring our gut bacteria, the vaccine schedule has remained utterly and astonishingly impersonal. Instead of formulating personalized vaccination approaches that make sense for individual children's bodies and circumstances, more and more vaccines are being fast-tracked through the approval process and added to the vaccination schedule for all children. My daughter wasn't diagnosed with autism until she was five years-old, and I wasn't diagnosed with mitochondrial disease until I was 34 years-old. By the time we received our respective diagnoses, we had long since been vaccinated—and no amount of proof of risk to patients with our respective diseases would have helped us without the diagnosis in place.

It's pretty clear that vaccines didn't cause my children's autism. But that doesn't mean that vaccines don't pose other health risks to me or my kids, or that other children might have different medical challenges that could leave them vulnerable to vaccine injury. As parents, we are given information and the right to make a decision of informed consent, based on what we know today. Through time that might change, but it is always our right as patients or parents of patients to provide or withhold consent.

Until and unless the government removes it, that is.

While I don't know whether I will be selected, I have applied to participate in the NIH vaccine study on patients with inborn errors of metabolism. Not because I am anti-vaccine or pro-vaccine, but because I believe that real science requires extensive study, asking hard questions, and being willing to admit what we do not know. It requires being willing to scrap decades of accepted wisdom and dogma when we learn that we were wrong. And it means being aware every day that in 2,000 years, today's "science" will have been just another bump on the road to knowledge.