How competing information in the vaccine debate is shaping public health, and how Oregon health officials are fighting back.
Words by Andrew Goldberg
Photos by August Frank
Ida Keir walked into a Eugene City Club event in January clutching a small photograph of an infant. The picture was of her son, David. He had died on that very day, 31 years earlier. He was just 2 years old.
During his short life, David suffered from febrile seizures, which were known to be relatively harmless side effects from the diphtheria, pertussis and tetanus vaccine in some children. One night Keir walked into his room and found him dead.
She watched from the crowd as panelists debated whether Oregon’s vaccination rates — among the lowest in the nation — amounted to a public health crisis. The three experts on the panel said it is essential for parents to make sure that their kids get vaccinated. They also acknowledged there’s a lot of misinformation out there.
Keir said that, overall, she’s still a supporter of vaccines, but added, “I don’t know what I’d be believing if I had little kids now.”
Dr. Patrick Luedtke, the senior public health officer for Lane County, said public health officials are trying to fight back with accurate, reliable information about the value of vaccinations. But it’s an uphill battle. Surveys from his own department show that many people don’t just distrust vaccines themselves, they distrust the government, the pharmaceutical industry and science.
In the digital age, information is free and abundant. In theory, having countless answers at our fingertips would usher in a new age of learning for society. In practice, the vastness of the Internet has been ripe for conspiracies, echo chambers, confirmation bias and blatant falsehoods.
The result is that 7 percent of Oregon kindergartners did not receive vaccinations in 2014.
Luedtke said the role of public health officials is to be first, be right and be credible. But in the social media age, being first is almost impossible.
“We can be right, however,” Luedtke said. “So we focus on the being right and creating a credible image out there.”
Public perception doesn’t always follow scientific consensus. Ideas at the fringes of the scientific community often command significant media attention. The vaccine debate demonstrates how conflicting narratives can compete in a bitter battle to shape public policy.
Consider the group Oregonians for Medical Freedom, a political action committee that reaches out to educate citizens and encourages them to reach out to their elected officials. The group was involved in defeating legislation in Salem that would have done away with nonmedical exemptions for vaccines. Similar legislation has become law in California, Mississippi and West Virginia.
In January, Bob Snee, who serves on the OMF board, hosted a lecture at a Eugene chiropractor’s office about vaccines and individual rights. To him, vaccines are about liberty as much as science. He said during his talk that personal liberties are more important than the “perceived common good.”
“If we’re not sovereign over our own bodies, if we can’t control what goes into our own bodies, if we can’t prevent the government or anybody from injecting anything into our bodies, then we’re not free people — we’re slaves and serfs to the government,” Snee said.
Snee told the audience that the Food and Drug Administration does not test vaccines, even though that is one of the agency’s responsibilities. He also cast doubt on the independence of academic research on the subject.
Last year, one of Snee’s colleagues, Portland pediatrician Paul Thomas, co-wrote a book that was skeptical of traditional vaccine schedules, along with writer Jennifer Margulis. Margulis describes herself as a “writer not afraid to stick her neck out,” and has contributed to the New York Times and the Washington Post on natural parenting topics.
The book she co-wrote with Thomas is called “The Vaccine-Friendly Plan.” However, the book encourages parents to disregard recommendations from the Centers for Disease Control, and delay certain vaccines until past the age of three. Margulis and Thomas warn parents about the dangers of toxins in vaccines, and present themselves as taking on the medical establishment.
In an interview, Margulis maintained that she remains pro-vaccine, calling them “a marvel of modern medicine.”
But to her, there are simply too many unknown risks.
Specifically, “we don’t know if vaccines are causing autism,” she said.
In making that case, Margulis was referencing one of the most controversial claims in the vaccine debate. It stems from a 1998 study published by a British researcher that suggested the mumps, measles and rubella vaccine predisposed children to autism.
The results of that study have consistently been refuted by the world’s leading scientific and medical groups. The CDC, the American Academy of Pediatrics, the World Health Organization and Autism Speaks have all concluded there is no evidence linking vaccines and autism. In addition, a meta-analysis of ten studies and 1.2 million children, published in the scientific journal Vaccine, found no link between the two.
Paul Slovic, a University of Oregon psychology professor who studies decision-making, said it’s psychologically understandable for people to be wary of vaccines. When a child gets vaccinated and then starts exhibiting signs of autism, both of which occur in early childhood, it’s natural for people to connect the dots.
“Our minds do associate one act and another act if they come sequentially and there’s some effect,” Slovic said. “That’s kind of how we learn…if I flip the light switch and I’m a child, I learn I can make the light go on by flipping the switch.” But that line of thinking doesn’t always apply to medicine or science.
“Just because every time the rooster crows in the morning, the sun comes up, doesn’t mean the rooster caused the sun,” he said.
Luedtke echoed that statement.
“In the real world, you turn a light on and the light comes on. Our life is black and white, so to speak, light and dark,” he said. “But in science it’s not so much that way. So you get the totality of evidence.”
For some people, simply the idea of vaccines can lead to suspicion. Injecting people with diseases to prevent them from getting those diseases is not exactly common sense. According to Slovic, there’s a negativity associated with that, which can supersede less tangible statistics and facts in people’s minds.
In some ways, the efficacy of vaccines works against them. Slovic pointed out that there’s no way for healthy people to know that a vaccine has worked because they don’t know whether or not they would have gotten sick without it. People often need to see a clear, tangible benefit, he said.
To Luedtke’s mind, vaccines have been so effective that people have trouble grasping just how terrible these diseases were. Since their introduction in the late 18th century, vaccines have pushed once-common diseases into obscurity and eliminated others altogether. There’s a reason smallpox is only discussed in the past tense. “We’ve forgotten about things like polio, which used to paralyze 16,000 Americans every year,” Luedtke said.
That’s why older Americans, who lived with the reality of these diseases, tend to favor vaccinations more than other demographics. A Pew Research Center survey from February found that more than 90 percent of seniors support school vaccinations requirements – 8 percent above the national average.
Support for vaccinations increases when there’s a tangible threat, such as the recent Ebola outbreak. Luedtke pointed out that the public clamored for a vaccine when that threat emerged.
Locally, Luedtke and his department are trying to improve vaccination rates by actually going out and vaccinating people, as they do for students and communities with less access to care. They created What About The Colleges’ Health (W.A.T.C.H.), which works with the health care centers of all six higher education institutions in Lane County to raise awareness.
Luedtke said he’s among the first to admit that vaccines aren’t perfect. But the benefits, far, far outweigh any potential problems. And he knows that members of the medical community work to make them safer every day by doing constant follow-up research. Public health officials, according to Luedtke, have the public’s interest at heart. They have no ties to the pharmaceutical industry and their salaries are determined by elected officials. They have no agenda, other than keeping the public healthy.
“We’re looking at, in general, what systems do we put in place to prevent the maximum number of diseases or improve the maximum amount of health, based on the resources available. Sometimes vaccines are a danger. Sometimes the right answer is no vaccine. Sometimes the right answer is wait until the disease comes and then give people antibiotics.”
One of the big challenges is the idea of “herd immunity,” the notion that an individual doesn’t need to be vaccinated because most people around them are protected. The problem with that, according to Luedtke, is that vaccination rates aren’t high enough to make that possible.
He said that at least 95 percent of the population needs to be vaccinated in order to prevent big outbreaks for diseases like pertussis and measles. The measles outbreak that plagued Disneyland in late 2014 and infected 125 people started with just one unvaccinated 11-year-old. Luedtke said it’s only a matter of time until Oregon experiences a “wildfire-like outbreak.” There have been over twenty cases of mumps in Oregon so far this season.
Bridging that gap between science and public perception is easier said than done.
Luedtke divides vaccine skeptics into two groups. About 90 percent of people, he said, are fence-sitters. These are the people who are unsure about vaccines and are looking for information to help them make the right decision for themselves and their families. Fence-sitters can usually be persuaded by data.
Fence-builders are the opposite. They won’t be convinced, no matter what. “Well, you have to respect people’s wishes. They’re autonomous, they can do what they want,” Luedtke said. When medical professionals deal with fence-builders, all they can do is show them the vaccine schedule and ask if they would consider even one of them, Luedtke said.
Stakes are high
For Keir, it’s not a matter of scientific debate, but one of life or death.
The loss of her son was an unimaginable tragedy; it caused her to endeavor to learn more about vaccines, and eventually file a lawsuit against the vaccine manufacturer. She turned to the non-profit National Vaccine Information Center looking for honest, scientific answers. Over the decades, the NVIC has developed a reputation as an anti-vaccine organization, and the group heavily promotes the autism-vaccine connection. Keir said she remains unconvinced of any link.
To her, the priority is making sure that vaccines are as safe as possible. Despite her tragedy, she still opted to have her kids vaccinated. She also recommended that her grandkids be vaccinated. She couldn’t bring herself to support getting today’s vaccination for diphtheria, pertussis and tetanus, even though it’s a safer alternative to what David received 30 years ago. The new shot has fewer and less severe side effects but does not provide immunity for as long as its predecessor did.
“I think I’d be more worried about them not having any vaccinations than them having them, definitely,” she said. “I don’t want these diseases coming back. So I think people have gone overboard on the anti- direction. But they ought to be safer.”
Keir said she applauds the scientific progress that’s been made. But for her, it’s not a matter of statistics or probabilities.
“When you look at the societal rates, [the risk] is very small. But when it happens to you, it’s 100 percent,” Keir said.