Yesterday, results of a survey on beliefs about vaccines circulated on the internet. The survey conducted last week, asked over 2000 adults if they believed vaccines, or the MMR shot, caused autism. I’m not an expert on surveys and I don’t know how reproducible these results are to all parents in the US. But the news caught my eye (along with many others) when they reported: “Just a slim majority of Americans — 52 percent — think vaccines don’t cause autism” That’s a kind-of-odd-double-negative-type way to look at it, I suppose. Or maybe a hopeful one. The results reflect that nearly half of adults in America may suspect or worry that vaccines cause autism; 18% saying they believe a connection exists.

Whew.

The survey reminds us of some of the Why. It seems on some level, it’s a breakdown in our education. While only “69 percent of respondents said they had heard about the autism-vaccination theory — only half (47 percent) knew that the original Lancet study [that linked vaccines and autism] had been retracted, and that some of that research is now alleged to be fraudulent.” And, the details of all the research finding no link between autism and MMR is even more deeply buried, I suspect.

Even so, the numbers surprised me. In light of all the writing in the British Medical Journal this month on the scam behind Andrew Wakefield’s original paper in 1998 making the claim, I’ve been thinking about where we all stand in our understanding of immunizations, science, and trust. More on that next week. But I really wouldn’t have said 1/2 of my patient’s parents believed or suspected in a connection between autism and vaccines. What percentage would you have guessed?

Ultimately, the point for me is that there is a lot more suffering going on than I previously thought. An extra wince from mom and dad when the needle goes in. I mean, while the far majority (90%) of US children are fully vaccinated, there’s a huge percentage of parents who have serious concerns about immunizations. It’s dreadful to think that if this study reflects the group of parents that bring their children to see me, nearly 1/5 to 1/4 to 1/3 of my patients’ parents may feel we are increasing odds of autism when we vaccinate. On some level that thought is excruciating for me. Housing that kind of fear is an awful way to parent or to experience decisions around immunization. I want families to have insight, good evidence, data, yes. Along with time to question and explore, yes. I want them to understand that all interventions, from antibiotics to vaccines to surgery, have risk. And benefit, too. We all want the opportunity for an open understanding of the risks and benefits of vaccines, just like anything else we do in medicine. I really don’t want immunizations to feel like a leap of faith.

Unfortunately, so much about what we have heard about vaccines may be myth.

Yet, I know that fear around immunizations didn’t start with Andrew Wakefield. It started long ago. A nice opinion piece in the New York Times yesterday summarizes it well. Just like how chemotherapy feels barbaric (injecting toxins), vaccines can and have felt very awkward for families for a long time. The success of vaccines clouds our understanding of their effectiveness in saving lives. Most of us just don’t know what Measles or Diptheria looks and feels like. We have no experience. And in we, I mean both doctors and parents. Those who remember the feelings and experiences of patients and family members with vaccine-preventable illnesses are rare. Although, as we have all heard, the stories are returning about recent outbreaks in the US of both Measles and Pertussis. Most public health officials blame dwindling herd immunity secondary to the decreasing vaccination rates of children.

The New York Times Op-Ed ends with this thought:

Obstetricians, midwives and pediatricians should present the facts about vaccines and the nasty diseases they prevent early and often to expectant parents. Health agencies should mobilize local parents’ organizations to publicize, in realistic terms, the hazards that unvaccinated children can pose to everyone else in their communities. And health officials must redouble their efforts to harness the power of the Internet and spread the good word about vaccines.

I don’t know that telling fearful stories is the proper tactic to calm families or help them trust immunizations. Because really, this is an issue of a growing lack of trust. But I certainly (duh) believe we need to use the power of the Internet to spread the good word about vaccines.

Sharing horrifying stories about children dying from these diseases doesn’t feel like the right approach to me. And you? Would it help you, as a parent, to hear about the suffering of those children with measles, or the loss of life from these illnesses like influenza or complications of Varicella (chicken pox), or deafening meningitis, and the families who grieve? Although many believe it’s the right approach, I remain hesitant. I like to talk facts and ultimately I like telling stories. And I certainly don’t know I have a more perfect approach for now. I do share stories and statistics about vaccine-preventable illness in clinic every single day. But often I feel like these stories increase the tension and anxiety between parents and myself.

Please tell me what you think. Do you want to hear about details of illnesses these vaccines prevent from your pediatrician? Do you want to hear about the suffering and sequela? Does it help you? Do you think that real stories of disease illuminate the rationale for vaccinating? Do you feel/believe that hearing stories increases tension? Do facts about children and adults suffering and dying from preventable diseases increase your confidence in vaccines?

And one last thing, do you believe that vaccines cause autism?