By Amy Maxmen

Barb Dentz (right), an advocate with Tennessee Families for Vaccines, met with her state representative, Sam Whitson, to discuss the state’s declining childhood immunization rates in January. (AMY MAXMEN/KFF HEALTH NEWS)

Gayle Borne has fostered more than 300 children in Springfield, Tennessee. She’s cared for kids who have rarely seen a doctor — kids so neglected that they cannot speak. Such children are now even more vulnerable because of a law Tennessee passed last year that requires the direct consent of birth parents or legal guardians for every routine childhood vaccination. Foster parents, social workers, and other caregivers cannot provide permission.

In January, Borne took a foster baby, born extremely premature at just over 2 pounds, to her first doctor’s appointment. The health providers said that without the consent of the child’s mother, they couldn’t vaccinate her against diseases like pneumonia, hepatitis B, and polio. The mother hasn’t been located, so a social worker is now seeking a court order to permit immunizations. “We are just waiting,” Borne said. “Our hands are tied.”

Tennessee’s law has also stymied grandmothers and other caregivers who accompany children to routine appointments when parents are at work, in drug and alcohol rehabilitation clinics, or otherwise unavailable. The law claims to “give parents back the right to make medical decisions for their children.”

Framed in the rhetoric of choice and consent, it is one of more than a dozen recent and pending pieces of legislation nationwide that pit parental freedom against community and children’s health. In actuality, they create obstacles to vaccination, the foundation of pediatric care.

Such policies have another effect. They seed doubt about vaccine safety in a climate rife with medical misinformation. The trend has exploded as politicians and social media influencers make false claims about risks, despite studies showing otherwise.

Doctors traditionally give caregivers vaccine information and get their permission before delivering more than a dozen childhood immunizations that defend against measles, polio, and other debilitating diseases.

But now, Tennessee’s law demands that birth parents attend routine appointments and sign consent forms for every vaccine given over two or more years. “The forms could have a chilling effect,” said Jason Yaun, a Memphis pediatrician and past president of the Tennessee chapter of the American Academy of Pediatrics.

“People who promote parental rights on vaccines tend to downplay the rights of children,” said Dorit Reiss, a vaccine policy researcher at the University of California Law-San Francisco.

Drop in routine vaccination rates

Misinformation coupled with a parental rights movement that shifts decision-making away from public health expertise has contributed to the lowest childhood vaccine rates in a decade.

This year, legislators in Arizona, Iowa, and West Virginia have introduced related consent bills. A “Parents’ Bill of Rights” amendment in Oklahoma seeks to ensure that parents know they can exempt their children from school vaccine mandates along with lessons on sex education and AIDS. In Florida, the medical skeptic leading the state’s health department recently defied guidance from the Centers for Disease Control and Prevention by telling parents they could send unvaccinated children to a school during a measles outbreak.

Last year, Mississippi began allowing exemptions from school vaccine requirements for religious reasons because of a lawsuit funded by the Informed Consent Action Network, which is listed as a leading source of anti-vaccine disinformation by the Center for Countering Digital Hate. A post on ICAN’s website said it “could not be more proud” in Mississippi to “restore the right of every parent in this country to have his or her convictions respected and not trampled by the government.”

Even if some bills fail, Reiss fears, the revived parental rights movement may eventually abolish policies that require routine immunizations to attend school. At a recent campaign rally, Republican presidential candidate Donald Trump said, “I will not give one penny to any school that has a vaccine mandate.”

The movement dates to the wake of the 1918 influenza pandemic, when some parents pushed back against progressive reforms that required school attendance and prohibited child labor. Since then, tensions between state measures and parental freedom have occasionally flared over a variety of issues. Vaccines became a prominent one in 2021, as the movement found common ground with people skeptical of covid-19 vaccines.

“The parental rights movement didn’t start with vaccines,” Reiss said, “but the anti-vaccine movement has allied themselves with it and has expanded their reach by riding on its coattails.”Top of Form

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When lawmakers silence health experts

In Tennessee, anti-vaccine activists and libertarian-leaning organizations railed against the state’s health department in 2021 when it recommended covid vaccines to minors, following CDC guidance. Gary Humble, executive director of the conservative group Tennessee Stands, asked legislators to blast the health department for advising masks and vaccination, suggesting the department “could be dissolved and reconstituted at your pleasure.”

Backlash also followed a notice sent to doctors from Michelle Fiscus, then the state’s immunization director. She reminded them that they didn’t need parental permission to vaccinate consenting adolescents 14 or older, according to a decades-old state rule called the Mature Minor Doctrine.

In the weeks that followed, state legislators threatened to defund the health department and pressured it into scaling back covid vaccine promotion, as revealed by The Tennessean. Fiscus was abruptly fired. “Today I became the 25th of 64 state and territorial immunization program directors to leave their position during this pandemic,” she wrote in a statement. “That’s nearly 40% of us.” Tennessee’s covid death rate climbed to one of the nation’s highest by mid-2022.

By the time two state legislators introduced a bill to reverse the Mature Minor Doctrine, the health department was silent on the proposal. Despite obstacles for foster children who would require a court order for routine immunizations, Tennessee’s Department of Children’s Services was silent, too.

Notably, the legislator who introduced the bill, Republican Rep. John Ragan, was among those simultaneously overseeing a review of the agency that would determine its leadership and budget for the coming years. “Children belong to their families, not the state,” said Ragan as he presented the bill at a state hearing in April 2023.

Democratic Rep. Justin Pearson spoke out against the bill. It “doesn’t take into account people and children who are neglected,” he told Ragan. “We are legislating from a point of privilege and not recognizing the people who are not privileged in this way.”

Rather than address such concerns, Ragan referenced a Supreme Court ruling in favor of parental rights in 2000. Specifically, judges determined that a mother had legal authority to decide who could visit her daughters. Yet the Supreme Court has also done the opposite. For instance, it sided against a legal guardian who removed her child from school to proselytize for the Jehovah’s Witnesses.

Still, Ragan swiftly won the majority vote. Tennessee Gov. Bill Lee, a Republican, signed the bill in May, making it effective immediately. Deborah Lowen, then the deputy commissioner of child health at the Department of Children’s Services, was flooded with calls from doctors who now face jailtime and fines for vaccinating minors without adequate consent. “I was and remain very disheartened,” she said.

A right to health

Yaun, the Memphis pediatrician, said he was shaken as he declined to administer a first series of vaccines to an infant accompanied by a social worker. “That child is going into a situation where they are around other children and adults,” he said, “where they could be exposed to something we failed to protect them from.”

“We have had numerous angry grandparents in our waiting room who take kids to appointments because the parents are at work or down on their luck,” said Hunter Butler, a pediatrician in Springfield, Tennessee. “I once called a rehabilitation facility to find a mom and get her on the phone to get verbal consent to vaccinate her baby,” he said. “And it’s unclear if that was OK.”

Childhood immunization rates have dropped for three consecutive years in Tennessee. Nationwide, downward trends in measles vaccination led the CDC to estimate that a quarter million kindergartners are at risk of the highly contagious disease.

Communities with low vaccination rates are vulnerable as measles surges internationally. Confirmed measles cases in 2023 were almost double those in 2022 — a year in which the World Health Organization estimates that more than 136,000 people died from the disease globally. When travelers infected abroad land in communities with low childhood vaccination rates, the highly contagious virus can spread swiftly among unvaccinated people, as well as babies too young to be vaccinated and people with weakened immune systems.

“There’s a freedom piece on the other side of this argument,” said Caitlin Gilmet, communications director at the vaccine advocacy group SAFE Communities Coalition and Action Fund. “You should have the right to protect your family from preventable diseases.”

In late January, Gilmet and other child health advocates gathered in a room at the Tennessee Statehouse in Nashville, offering a free breakfast of fried chicken biscuits. They handed out flyers as legislators and their aides drifted in to eat. One pamphlet described the toll of a 2018-19 measles outbreak in Washington state that sickened 72 people, most of whom were unvaccinated, costing $76,000 in medical care, $2.3 million for the public health response, and an estimated $1 million in economic losses due to illness, quarantine, and caregiving.

Barb Dentz, an advocate with the grassroots group Tennessee Families for Vaccines, repeated that most of the state’s constituents support strong policies in favor of immunizations. Indeed, seven in 10 U.S. adults maintained that public schools should require vaccination against measles, mumps, and rubella, in a Pew Research Center poll last year. But numbers have been dropping.

“Protecting kids should be such a no-brainer,” Dentz told Republican Rep. Sam Whitson, later that morning in his office. Whitson agreed and reflected on an explosion of anti-vaccine misinformation. “Dr. Google and Facebook have been such a challenge,” he said. “Fighting ignorance has become a full-time job.”

Whitson was among a minority of Republicans who voted against Tennessee’s vaccine amendment last year. “The parental rights thing has really taken hold,” he said, “and it can be used for and against us.”

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KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.