An Ohio high school senior's passionate testimony at a Senate committee hearing Tuesday gave an indication of how misinformation from social media, such as Facebook and Twitter, is at the root of the anti-vaccine movement.
Ethan Lindenberger, 18, from Norwalk, Ohio, who went against his mother's wishes to get vaccinated, was the youngest of five panelists invited to speak before a meeting of the Senate Committee on Health, Education, Labor and Pensions to discuss the recent outbreaks of preventable diseases.
He gained national attention in a now-viral Reddit post in which he wrote that he had not been fully vaccinated due to his mother's belief that vaccines are dangerous.
“For my mother, her love and affection and care as a parent was used to push an agenda to create a false distress. And these sources, which spread misinformation, should be the primary concern of the American people,” Lindenberger said at the hearing.
“My mother would turn to social media groups and not to factual sources like the [Centers for Disease Control and Prevention]. It is with love and respect that I disagree with my mom.”
When asked where he got most of his information about vaccinations, Lindenberger responded: "Not Facebook."
The advisory panel also included Washington state Secretary of Health John Weisman; Dr. Jonathan McCullers of the University of Tennessee; John Boyle, president of the Immune Deficiency Foundation; and Emory University epidemiologist Dr. Saad Omer. The speakers challenged the federal government to put more money toward vaccine safety research and campaigns to counter anti-vaccine messages, similar to anti-Tobacco campaigns.
Lindenberger emphatically agreed.
“When you convince parents that... their children are at risk, that's a much more substantial way to cause people to change their minds,” Lindenberger said.
“People resonate better with stories. A large portion of the anti-vaccine information that my mom has provided me is on an anecdotal level. She would reaffirm her position because she would say that ‘she knows people’ and ‘heard stories,” he told the committee.
The testimony comes amid the ongoing outbreaks of measles, a disease preventable by vaccines. Since the beginning of the year, the CDC has confirmed 206 cases of measles in 11 states. Almost all of the cases are unvaccinated children.
At Tuesday's hearing, McCullers, a pediatrician, called childhood vaccine programs “the most powerful public health initiative in the history of this country.”
Sen. Rand Paul, R-Ky., did not question the panel, but called vaccine requirements “un-American.”
“I’m not here to say ‘don’t vaccinate your kids.’ I believe the benefits of vaccines greatly outweigh the risks, but I still do not favor giving up on liberty for a false sense of security,” he said.
His comments were received by some cheers from the audience.
Lindenberger’s mother, Jill Wheeler, who was not at the hearing but planned to listen, said she was scared for her son when he first told her he planned to get fully vaccinated. Despite her son's new status as a vaccine advocate, she remains convinced that vaccines can be harmful.
“He’s a great kid. I love him very much, but I feel what he’s representing is wrong,” Wheeler told NBC News. “It’s taken away our freedom of speech and my question is, what is going to be next?”
Tuesday's advisory panel urged the federal leadership to bolster responses against misinformation campaigns and increase vaccine safety research to ameliorate mistrust that has become all too common.
“We need sustained funding, we are asking that you increase prevention budget to the CDC by 22 percent by 2022,” Washington health official Weisman said. “We need federal leadership for a national vaccine campaign that counters the anti-vaccine campaign similar to the Truth Initiative anti-tobacco campaigns.”
The committee also called for doctors to be reimbursed for vaccine consultations, while also highlighting the strain the measles outbreak has put on the health care system.
“When herd immunity is not achieved it is a strain on our health care system, and hundreds of providers are pulled from crucial public health roles,” Washington State Sen. Patty Murray said at the hearing.
“We need to figure out how the federal government can help educate people on vaccines and provide accurate and factual information. The outbreak has financial implications, as well. The MMR vaccine costs $20, but so far Washington state has spent over $1 million addressing the measles outbreak,” said Murray.