Ever since a British doctor published a study in 1998 suggesting that some vaccines may contribute to autism, the number of parents refusing vaccines for their children, or demanding an “alternative’’ immunization schedule, has steadily grown.
And even though that paper has since been discredited, and scores of peer-reviewed studies have failed to find any link between vaccines and autism, the suspicion that vaccines are dangerous has stuck.
“I never really liked how many vaccinations a baby was getting,” said Anna Popp, an Easthampton librarian who allowed her 5-year-old daughter to get some of the recommended vaccines, but not all, and delayed other vaccinations beyond the age that doctors say is safe. “I just felt, if I could put some of those off until later, I would rather not overburden my child’s system with a bunch of toxic organisms.”
Popp knows that following her own rules on immunization puts her — and many other vaccine skeptics — at odds with the medical establishment. Popp lives in Western Massachusetts, where the percentage of parents choosing not to vaccinate their children is well above the state average.
The American Academy of Pediatrics and the Centers for Disease Control and Prevention, among others, have vouched for the safety of today’s vaccine regimen, and insist vaccines are neither toxic at the doses given nor taxing to normal immune systems.
While there are rare side effects, medical researchers say the risk of not vaccinating is much greater. Other than smallpox, which has been eradicated, most diseases unseen for decades in the United States — from measles and mumps to Hepatitis B and rubella — still exist somewhere in the world. In October, the United Nations identified an outbreak of polio in Syria, where UNICEF reports that 95 percent of children had been vaccinated before the civil war started in 2011. In the past two years, hundreds of thousands of children have gone without immunizations.
“They’re only a plane ride away. And every year the number of kids getting exempted (from vaccines) grows,” said Dr. Lawrence Madoff, director of Epidemiology and Immunization for Massachusetts. “When immunization rates fall, it doesn’t take long, even in a developed country, for diseases to resurge.”
A 2010 pertussis outbreak in California, which caused 9,120 illnesses and 10 deaths, was recently traced to voluntary undervaccination. Earlier this year, Massachusetts public officials raised the alarm when two cases of measles emerged in Boston hospitals. Last year, there were no measles cases in Massachusetts, but in 2011, there were 24 cases.
Madoff said the risk of disease is not just borne by intentionally under-immunized children, but also by those unprotected for other reasons, such as infants too young or medically unfit for certain vaccines, people with compromised immune systems, and the small percentage of people for whom the vaccines just don’t work.
Traditionally, those vulnerable groups have relied on a concept called “herd immunity,” in which enough people have been vaccinated that the spread of disease is unlikely. But health officials say that, in some regions, herd immunity could be dangerously weakened by the anti-vaccine trend.
“I think a lot of people hide in the herd,” said Amherst pediatrician and national vaccine advocate Dr. John Snyder. “That isn’t very fair. Because if your neighbor [refuses vaccinations] and then their neighbor says the same thing, now . . . we’ve reached that herd immunity threshold and disease will seep into that community.”
On average, Massachusetts (where the state pays for all vaccines) still has a relatively high rate of immunization — from 95 percent to 98 percent, depending on the vaccine. Last year, only 1.5 percent of Massachusetts kindergartners were granted medical or religious exemptions from school vaccine requirements, as allowed by law. But that’s almost 10 times higher than the exemption rate in 1984.
What’s more alarming, Maddoff said, are the concentrated pockets of under-vaccination. In Western Massachusetts, Hampshire County has a 4.2 percent rate of vaccine refusal, Berkshire County’s is 3.2, and Franklin County’s vaccine refusal rate is 6 percent.
“It’s a paradox because it’s happening in communities that are well-educated and well-off,” Madoff said. “This is counter to most public health phenomena.”
Snyder has worked in low-income communities in New York City and Springfield, where children often missed their scheduled vaccinations because of poor access to health care. But since getting a job in the Pioneer Valley, Snyder has been shocked at the number of middle-to-high income parents who refuse all vaccines for their children or want a more spread-out schedule than what the CDC recommends.
“A lot of it has to do with the sense of being empowered to question authority, which is a good thing in general, but it can go way too far when people question experts who know about things you don’t,” said Snyder. “It’s a common theme that we see parents questioning scientific facts in the same way they would debate a political topic.”
Popp considers that “healthy skepticism.” She suspects there are financial interests behind universal immunization policies, and she does not put much stock in assurances by the medical establishment on vaccine safety.
“They are humans, and humans are prone to human error,” said Popp.
Popp had no trouble finding information about the purported dangers of vaccines — on the Internet, in books, through Facebook groups, in medical databases. A 2007 bestseller by pediatrician Bob Sears, “The Vaccine Book,” popularized a delayed vaccine schedule, even though immunologists say that creates risky time-gaps in disease protection.
Those are the sources of information that Jenny Giering — a mother and composer — aims to debunk. A child of two chemists and mother to a fully vaccinated 7-year-old son, Giering keeps a stack of medical studies on hand to educate her friends and peers who mistrust vaccines.
“It’s a topic you don’t bring up unless you’re prepared to go toe to toe with someone, especially where we live,” said Giering, who’s from the hill town of Worthington, known for locavore, organic lifestyles. “If I can take down one little piece of misinformation on Facebook, or make someone even reconsider the source of that information, that’s a win.”
But Giering says she often feels drowned out by a vocal online community of vaccine resisters — one that shares tips on which pediatricians and practices are most tolerant of alternative vaccine views. That puts many doctors in a quandary as they try to respect their patients’ wishes while also protecting the broader community.
“It’s extremely controversial,” said Dr. Sara Rourke of Greenfield Pediatrics, where up to 9 percent of its 10,000 patients have refused or delayed vaccines. “We have hard conversations with families, and we’re always weighing pros and cons.”
Last year, Rourke said, the practice learned that anti-vaccine parents were seeking out one of its providers — someone considered flexible on vaccines. That led them to revamp the practice’s policies. Now, any parent who refuses a vaccine for their child must sign a form acknowledging that they are going against medical advice. “But we would never want a patient to feel they couldn’t get excellent pediatric care in our office on the sticking point of vaccinations,” said Rourke.
Snyder wishes more pediatricians would lobby the vaccine skeptics, or at least help them distinguish between sound and pseudo science. “While it does take a lot of effort and a lot of time, which a lot of pediatricians don’t have, I can actually explain the rationale behind why [not vaccinating] is not a good idea,” he said, “and often I’m able to change their mind.”
The ultimate decision on vaccinations remains in the hands of parents. In Massachusetts, as in most states, parents can claim a religious exemption to public school requirements by writing a note to their school district. (A medical exemption requires a doctor’s signature.) Snyder and Giering would like to see the state policy made stricter, but Madoff said there are no efforts to do so.
“We don’t think it’s fruitful to try to convince people who are adamantly opposed [to vaccines],” Madoff said. “You would be setting yourself up to be perceived as the vaccine police. It would feed into anti-government sentiment and a perception of being coerced into doing things you weren’t comfortable with.”
Instead, Madoff said the Massachusetts Department of Public Health is focusing on parents who are still on the fence about vaccinations. The state is rolling out a detailed immunization registry that will pinpoint particular towns and neighborhoods with the highest rates of vaccine refusal. Health officials can then offer pediatricians in those areas extra support and educational materials.
Popp says she’s open to new information, but is not willing to give extra weight to doctors who insist she follow their vaccination advice.
“I simply have to weigh the decisions based on where my conscience goes and what logically makes sense to me.”Karen Brown can be reached at firstname.lastname@example.org. An audio version of this story is available at nepr.net.