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Former anti-vaxxer addresses infectious disease conference in Normal

Woman wearing cloth mask over her face and the words 'Kiss Me I'm Vaccinated' on her shirt
Courtesy
Heather Simpson

A few years ago, Heather Simpson refused to get any vaccines for her child. Now, she's a pro-vaccine advocate, touring the country to explain her transformation and how she talks to others about the vaccine hesitancy and fears she once had.

“I really did think that vaccines were the enemy,” she said, “that they would cause autism, allergies, cancer. Everything bad ever.”

Simpson was the keynote speaker Wednesday at the Illinois Department of Public Health’s infectious disease conference at Illinois State University.

Simpson said she was introduced to anti-vaccine rhetoric by a Facebook docuseries published by current presidential candidate Robert F. Kennedy Jr., who has been an anti-vaccine activist for years.

“It promised to be middle ground,” Simpson said. “It was anything but.”

Woman in black shirt with small blotches are over her skin and these words on the screen: "Was trying to think of the least scary thing I could be for Halloween... so I became the measles'
courtesy
Heather Simpson said she appeared as a measles patient for Halloween to demonstrate the health risks for being unvaccinated.

Simpson said the type of language used in anti-vaccine media like that prey on people's anxiety. She said the rhetoric made it feel like you had a choice, but vaccinating your children would make you “a monster.”

Simpson already distrusted medical professionals that she believed “brushed her aside.” For a time, that fueled her vaccine skepticism.

When her daughter was a baby, she would have episodes of periodic breathing while she slept. This is when an infant will stop breathing for around 10 seconds while asleep and then begin again after. It’s normal in newborns.

Simpson said she knew something was wrong, and would check on her every 20 minutes. Doctors however reassured her that it was just periodic breathing and told her that she was suffering from “first-time mom anxiety.” She used a special sock to track her daughter’s heart rate and oxygen saturation. The sock wasn’t FDA-approved, and she said doctors brushed that aside as well.

After pushing doctors for a sleep study, they were able to diagnose her daughter and help her to breathe better. Simpson credits the sock and her own persistence for saving her daughter’s life.

Simpson said throughout this process, it was difficult to communicate with medical professionals to get the facts she wanted. She also felt the lack of transparency and cooperation from these professionals made it easier to fall into anti-vaccine movements.

“I went to my pediatrician when my daughter was born and tried to talk about the docuseries and what I learned in it,” she said. “I wanted her to convince me otherwise but, I literally remember her crossing her arms and saying, ‘I won’t talk about that.’”

Simpson believes the pro-vaccine community needs to do more to counteract anti-vaccine narratives.

“They use all the right words,” she said about anti-vaccine activists, “I wish the medical community would use more.”

Simpson first posted her anti-vaccine thoughts on Facebook.

“I had been watching these, mostly women, talk about their anti-vax beliefs on Facebook, and just thinking that’s so bold and brave and I really wish I could do that," she continued, “I was so lonely out in west Texas as a mom of a very young child whose husband worked all the time. I didn’t have close friends or family and I needed a community.”

She said she was embarrassed to share her thoughts at first, and didn’t want people she knew to see what she believed. But after her first few posts, she said “it blew up bigger than I ever really dreamed.”

Her following grew larger, and she made friends in the community, some of whom she is still friends with today.

Simpson said it was tough to exist online, though, and she'd have panic attacks nearly every night. The split between how she was treated by people on both sides of the argument stood out to her.

“When I was an anti-vaxxer, my followers would ask me questions as if I was a doctor.” she said. “Pro-vaxxers would view me as literally Satan, like that I just wanted to destroy the world and kill all the children.”

Simpson said people on both sides viewed her as problematic, both before and after she made the transition to a vaccine activist. She said she’s received death threats, countless hateful messages, and has even been theorized by some of her former followers to have been killed and replaced by a government plant — something she assures is not true.

Simpson said she was just doing what she believed was right.

“I would post all my anti-vaxx thoughts, thinking that if I could save one child from getting vaccinated, I would save a life and that would all be worth it.”

However, during the COVID-19 pandemic, Simpson’s thinking began to change.

“COVID hit, and my anti-vaxx followers are just waging a war on masks,” she said, “I started thinking that’s kind of weird, that you’re acting like a martyr when you could just wear a mask and save a whole life. It gave me this weird feeling of entitlement. I kind of got the ick from the whole thing.”

Simpson said around this time she began conversations with doctors who were able to answer her questions around common vaccine misconceptions using science, but without bombarding her with statistics — something she said is incredibly important for health care providers to do for hesitant patients.

“I started reading science and listening to doctors and talking to them about my questions... and they broke them down into piece-by-piece arguments that completely shattered my anti-vaxx beliefs,” she said. “I had no leg to stand on anymore after that.”

After these changes, Simpson and her friend and fellow former anti-vaccine activist Lydia Greene founded Back to the Vax, which has a website, a Facebook group, and a podcast advocating for vaccines and transparency in the medical field.

Back to the Vax advocates for compromises in how vaccination is done, telling hesitant parents and patients that it’s OK to ask questions and approach vaccines your way, safely.

“We don’t allow misinformation,” she said. “Like with the slow schedule [an alternative vaccine method that involves slowly being vaccinated over the course of several months or years instead of getting multiple shots at the same time]. We say, ‘Hey, it’s OK to do the slow schedule because of anxiety, but you need to acknowledge that it’s not because it’s safer.’”

Simpson said she believes strategies like this, more compassion from everyone on both sides, and transparency and patience from medical professionals could help raise vaccination rates.

“We’re fighting an anti-vaxxer like they are the bad guy, when really it’s anxiety we’re fighting, it’s misinformation we’re fighting, it’s people with money that run ads we’re fighting. We’re not fighting the freaked-out mom. Our fight isn’t against people, it’s against ideas and bigger things outside of that.”

Erik Dedo is a reporting and audio production intern at WGLT. He joined the station in 2022.