Devi Shastri

Appleton Post-Crescent

Just after the new year, Dr. John Steiner spent his 57th birthday in the hospital, suffering from an illness that most people would experience as a minor head cold.

Steiner has practiced internal medicine in Wisconsin for 25 years, but there was little he could do as his own body's fight against his cold launched a complication in its battle against his leukemia.

Six months of chemotherapy and a stem cell transplant in April wiped out his immune system.

With the transplant, Steiner's doctors tried to rid his body of disease-ridden white blood cells, which normally work to fight off infections. The effort to save his life also left him defenseless to the barrage of pathogens around him.

So, when an otherwise common virus hospitalized him for four days, the Fond du Lac physician's view of his environment changed.

Steiner is worried about more than catching a cold: He worries about easily preventable illnesses, including measles.

Infrequent today, yes. But, he knows, the germs are just a plane ride away from Wisconsin.

Thanks to a principle called herd immunity, healthy people can make up for Steiner's poor immune system by creating a buffer of vaccinated people around him.

However, data from the Wisconsin Department of Health Services shows a growing number of families are opting out of vaccinations required to attend school by using a "personal conviction" waiver, which takes little more than a signature.

At the same time, fewer Wisconsin kindergartners are getting some of the required vaccines, U.S. Centers for Disease Control and Prevention data shows.

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Steiner has to wait at least another year to get the MMR vaccine, which most Americans receive in infancy to protect against measles, mumps and rubella. In the interim, he'll rely on the people he interacts with every day to protect him. But what if they can't?

“Should I go to a grocery store and count on the fact that the young woman who’s taking my money is going to have her vaccines and not cough all over the dollar bill she gives me back as change?” he asked.

It's a thought that brought him to tears.

“If a simple head cold gets me four days in the hospital, what does a more severe (disease) do?” Steiner asked. “I never thought about it that way before.”

Vaccine waivers on the rise

Wisconsinites battle the germs around them every day.

A select few of those germs, known in past eras to ravage civilizations by incapacitating and killing millions, are fought en masse, thanks to vaccines: measles, mumps, rubella, diphtheria, chickenpox, polio and pertussis (whooping cough), among others.

Over 90 percent of Wisconsin kindergartners are vaccinated against these diseases in the first two years of life.

But state data show some communities and schools could have cracks in their armor.

Every state requires kindergartners to be up-to-date on the vaccines recommended by the CDC to enroll in school or childcare. Children who are allergic to a vaccine ingredient or who have damaged immune systems can get a medical exemption.

Yet a small but growing percentage of kindergartners across Wisconsin lack some or all of their shots, despite being compliant under state law.

That's because parents and guardians can exempt children from vaccinations for a non-medical reason by doing little more than signing on a dotted line and citing a religious belief or “personal conviction” against the immunization requirements.

DATABASE:Wisconsin vaccination rates of school children

Wisconsin is one of only 18 states to allow personal conviction waivers.

Vaccine waivers have become more frequent over the last two decades. Figures from the Wisconsin health department show that in the 1997-98 school year, 1.6 percent of students had an exemption to vaccination. That jumped to 4.8 percent in 2016-17.

“The medical (waiver) has stayed very low and very consistent,” said Stephanie Schauer, Wisconsin immunization coordinator. “What we have seen is that rise has really been the personal conviction waiver.”

Though specific goals vary by disease, the World Health Organization and others aim for 90 to 95 percent vaccine coverage to keep herd immunity strong.

Many Wisconsin schools are trending toward, or have dropped below, 95 percent and even 90 percent coverage.

In the past four school years, the number of Wisconsin schools with 95 percent vaccine coverage or higher dropped to fewer than 900, while nearly 1,200 were in the 90-94 percent range, according to a USA TODAY NETWORK-Wisconsin analysis of state health data. More than 800 other schools had coverage rates below 90 percent.

The easier the disease spreads, the higher the threshold for herd immunity. For example, the CDC and WHO aim for 95 percent vaccine coverage with MMR vaccine, which protects against diseases that can spread through as little as a sneeze or cough.

In the 2017-18 school year, 91.8 percent of Wisconsin kindergartners got an MMR vaccine, according to CDC data, down from 94.2 percent in 2009-10.

In the same time frame, 5.2 percent of kindergartners had a non-medical waiver on file, up from 3.1 percent.

Only four other states in the country had higher rates of non-medical exemptions for MMR last school year: Arizona, Alaska, Idaho and Oregon.

The rise in personal conviction waivers is a concern to public health officials, school health workers and some lawmakers.

Last year, a measles exposure in La Crosse drew resources from several local health departments in response. Meanwhile, Bayfield County had the sixth highest non-medical exemption rate in the country, according to a national research study.

Vaccines work only if the vast majority of people receive one, Dr. Patrick Remington, associate dean of public health at the University of Wisconsin-Madison, said. He worked at the CDC for six years and the Wisconsin Department of Health Services for nine.

“In communities where vaccine rates drop and you have a large pool of susceptible (people), it is just a matter of time until that community sees an outbreak and then it will be too late," he said.

Measles hits close to home

The investigation started April 22, 2018.

A traveler from Missouri arrived in La Crosse roughly two weeks earlier. With the unidentified person came measles.

The traveler was contagious, with a cough that left tiny viral particles hanging in the air for up to two hours, said Joann Foellmi, a public health nurse with the La Crosse County Health Department.

Over four days, the patient traveled through three cities. The person spent four days at the Comfort Inn in Onalaska and went to a dollar store, a church, a resort, another hotel and two restaurants.

The health department tracked down anyone who could have had exposure to the virus. Officials asked for proof of vaccination or past measles exposure.

There were 53 people in question. Two, unable to prove immunity, were asked to stay home from work for a period of time.

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“I hadn’t seen anything like this,” Foellmi said. “And I grew up in La Crosse County.”

Foellmi isn’t alone. The U.S. sees a mere fraction of the measles cases it did before the vaccination program started, according to the CDC. Public health officials declared the disease “eliminated” in 2000. Since then, the country saw its lowest number of cases in 2004 (37), and the highest in 2014 (667).

“Before the measles vaccination program started in 1963, about 3 to 4 million people got measles each year in the United States," the CDC’s website states. "Of those people, 400 to 500 died, 48,000 were hospitalized, and 4,000 developed encephalitis (brain swelling) from measles.”

Measles was contained in La Crosse, but it was not by luck, Foellmi said.

“If that herd immunity isn’t here and somebody who is just coming down with the measles is coming through, we’re not going to see just one or two people asked to stay home from work because they can’t show immunity. We’re going to see cases of measles," she said. "We’re going to see people get sick and end up in the hospital and we’re going to see deaths.”

The La Crosse exposure didn’t reach the schools, Foellmi said. Local schools work hard to keep track of the students who have waivers, she said, to make sure parents know about a threat if an outbreak does hit.

Yet, the department has seen the lack of vaccination cause issues in schools in the past, with cases of whooping cough.

“It’s frustrating, because even when we do investigations with cases of pertussis and parents think, ‘Oh, it’s just a cold,’” she said. “No, it’s highly contagious. It’s highly preventable. Your child will be coughing 100 days or longer. They’ll cough until they throw up or turn blue while they’re coughing because they can’t stop and catch their breath.”

Cracks in the armor

In Bayfield County, which forms the northernmost tip of Wisconsin, something insidious is brewing.

With almost 16 percent of its kindergarten population exempt under a non-medical waiver, Bayfield had the sixth highest rate of non-medical exemptions across 14 states in the 2016-17 school year, according to a paper published in June in PLOS Medicine.

The ranking came as a shock to Sara Wartman, director of the Bayfield County Health Department.

“It made me think about — are we more susceptible to outbreaks because we are, unfortunately, in that top 10 list?” Wartman asked. “I’m paying attention to that, because even if we have a smaller population, there seems to be a trend that people have alternate viewpoints on immunization.”

Peter Hotez, one of the paper’s authors and a dean in the Baylor College of Medicine in Texas, said the analysis is a broad, early look at the data that’s meant to encourage state and local leaders to look closer at their states in comparison to others.

Wartman did look closer. The county’s data show only 65 percent of 2-year-olds were vaccinated on time in the first half of 2018. That rate climbed to 74 percent when including those who were late.

Bayfield County’s high exemption rates could result from several factors, Wartman said.

Access to medical services in rural areas remains a challenge, especially when 12.3 percent of the county’s children live under the poverty line.

In cases of hardship, “it’s often easier to sign an NME (non-medical exemption form) than to bring the child in for vaccination,” Wartman said, because parents can’t get off work for a clinic visit and can’t afford daycare if their child isn’t in school.

But there’s an issue beyond access that concerns Wartman: misinformed choices.

She hears from school health aides about parents who stray from the CDC-recommended immunization schedule, leading to partial coverage, or avoid vaccines altogether. Those parents follow “alternative lifestyles and beliefs” and do their own research online, she said.

“A lot of the parents are college educated, and yet, they chose not to have their child vaccinated,” Wartman said. “There’s misinformation leading to that, what I would consider ‘fake news’ articles about what’s in the vaccine, government conspiracies and myths surrounding vaccines and autism.”

The experts, including Wartman, said they understand the importance of personal choice.

But parents need evidence-based information before they make that choice, so they understand the risk to their child and the community, she said.

"If you’re going to sign the non-medical exemption, there should be a warning or 15-minute training on the possible effects of not vaccinating, or something,” Wartman said.

“You know, you buy a pack of cigarettes and there’s a giant surgeon general’s warning. You buy alcohol and there’s warnings with big boxes and big lettering on it. But nowhere on the NME does it say, ‘By the way, every year, millions of people die across the world because of such and such (disease).’ To me, it’s just too easy.”

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Preparing not for ‘if, but when’

Only three states don't allow non-medical waivers: Mississippi, West Virginia and California, according to the National Conference of State Legislatures.

Other states offer non-medical exemptions but require parents to show they’ve received information about the efficacy of vaccines or talked with a doctor before deciding, UW-Madison’s Remington said.

It’s that sort of compromise that state Rep. Gordon Hintz, D-Oshkosh, thinks could be made in Wisconsin.

In 2016, Hintz proposed a bill in the Assembly that would eliminate the personal conviction waiver.

The bill came late in the legislative session and didn’t make it out of committee. Part of Hintz's goal was to raise awareness about the provision, he said.

The issue goes beyond ideology, Hintz said. Vaccination is a question of the social compact.

“What people need to understand is, we’re not telling anybody that they have to get vaccinated,” Hintz said. “We’re saying if you want to enter public schools and interact with other children, you’re not going to risk their livelihood and health.”

USA TODAY NETWORK-Wisconsin reached out to legislators from both parties for this story.

Many, including Sen. Patrick Testin, R-Stevens Point, who chairs the Senate’s Committee for Health and Human Services, did not respond to a request for comment. Rep. Joe Sanfelippo, R-New Berlin, who chairs the Assembly Committee for Health, declined to comment.

Rep. Debra Kolste, D-Janesville, said she supports removing the personal conviction waiver. Kolste is on the Assembly Committee for Health and is a former medical technologist.

Hintz acknowledged that the goal is to keep herd immunity strong across the state, in whatever way necessary. He said conversations about the importance of vaccination, compelling personal stories, or restrictions on personal conviction waivers could be the first steps toward change.

But he’s pushing for the personal conviction waiver removal because, he said, it’s “the best way” to reach that goal.

“I think as leaders, we don’t do enough on public health in a number of areas that deserve more attention,” Hintz said.

“This is one where, for decades, we did and we were successful at reducing human suffering. So, in addition to being more proactive, I think we really need to worry about reversing the trend that we’re seeing is heading in the wrong direction.”

He plans to re-introduce the bill this legislative session.

Keegan Kyle contributed data analysis for this report.

How we reported this:

Education watchdog reporter Devi Shastri interviewed public health experts across the state and country for this story. Parent responses were solicited through an online questionnaire on USA TODAY NETWORK-Wisconsin's websites. Shastri also reviewed nationwide data sets from the federal Centers for Disease Control and Prevention, state statistics from the Wisconsin Department of Health Services and peer-reviewed research to understand the scientific consensus on vaccination. Keegan Kyle built the database from data publicly available on the state health department website.