🔒Informing a misinformed world: With medical misinformation impeding their ability to deliver care, local providers have become frontline defenders of the truth
Throughout Central Mass., healthcare organizations, nonprofit leaders, and practitioners are working to combat a startling and unsettling rise in medical misinformation and disinformation.
Lia Spiliotes was one hour into her flight from Boston to Greece when she heard President Donald Trump link the use of Tylenol and its active ingredient acetaminophen during pregnancy to autism.
Lia Spiliotes, president and CEO of Crossroads Continuum
Spiliotes, the president and CEO of Marlborough nonprofit Crossroads Continuum, had received a text from her assistant and immediately watched the already viral Sept. 22 press conference.
It was heinous, she said.
As the leader of Crossroads, a school and services provider for children and young adults with autism, Spiliotes felt immediately compelled to make a statement, spending the next two hours of her flight drafting a letter to the Crossroads community.
“When leaders step in front of cameras and make sweeping claims about what ‘causes’ Autism, without solid evidence, it doesn’t help families — it unsettles them,” she wrote. “Parents deserve better than that. They deserve clear information, access to therapies and supports, and leaders who see the dignity and strengths of their children.”
Throughout Central Mass., healthcare organizations, nonprofit leaders, and practitioners are working to combat a startling and unsettling rise in medical misinformation and disinformation. A 2025 report released by Boston-based nonprofit The Physicians Foundation found 86% of the more than 1,000+ physicians surveyed felt the incidence of medical mis- or disinformaiton had risen compared to five years ago.
Spiliotes was far from alone in her response to Trump’s claims about Tylenol. Regulatory agencies, researchers, and organizations such as the American College of Obstetricians and Gynecologists and the Society for Maternal-Fetal Medicine came out with statements refuting Trump’s claims.
One of those was The Arc of Massachusetts, a Waltham-based human services provider for individuals with intellectual and development disabilities, whose CEO Maura Sullivan sent out a statement that day.
“We must ground decisions related to public health in sound science and evidence, not on rhetoric or opinions lacking the support of research. The correlation between acetaminophen and autism has not been proven,” she wrote.
Protecting pregnant mothers
“What was really concerning to me was simplifying something that is so complex, like autism, down to a simple message of ‘Just don't take Tylenol, and we're going to eradicate autism,” Sullivan said to WBJ.
Maura Sullivan, CEO of The Arc of Massachusetts
Mothers of children with autism typically carry a lot of guilt, wondering if they did something to cause their child’s diagnosis, and Trump's narrative was a continuation of societal cycles of blaming and guilting them, she said.
“Even when you know that the basis of autism is likely genetic, I think that there's enough room there that people are wondering ‘Where did I possibly go wrong?’” she said.
Trump’s claims don’t stop at solely causing psychological distress; his advice is simply not medically sound, said Dr. Cherise Hamblin, an OB/GYN and medical director of UMass Memorial Health’s doula program in Worcester.
Fevers, which acetaminophen treats, are generally caused by infection as the body responds by raising its temperature as part of our immune response. These infections in pregnant women can be anything from upper respiratory tract infection, to pilot nephritis to kidney infections, said Hamblin.
There should never be untreated fevers in pregnancy, she said. “Untreated fever can cause harm to both the patient and to the fetus,” said Hamblin.
Furthermore, acetaminophen is one of few over-the-counter pain management methods considered safe for pregnant women, and making a woman fear that option only makes pregnancy harder for her and her fetus. If a woman is in a constant state of pain, her heart rate, blood pressure, and stress hormones increase.
“How a woman experiences pregnancy impacts how their fetus develops. And as a society, we don't do such a great job of pregnancy being a positive and enjoyable experience for people,” said Hamblin. “This kind of idea that women are just a vessel to produce more people … It is a part of that theme, that undercurrent of patriarchy.”
Along with its cascade of associated harms, medical misinformation like Trump’s claims act as a distraction and let leaders off the hook from providing needed resources, Spiliotes said.
“We're dealing with not just in my particular area right now, but just generally in the environment. We're being tested and challenged every day by mis- and disinformation,” she said.
A health insurance flash poll
Spreading misinformation is lucrative
Dr. Amin Sabet said he sees quite a bit of misinformation in his field. As an adult endocrinologist at UMass Memorial Health, his practice focuses on treating patients for obesity and for general endocrinology conditions like thyroid disease.
Dr. Amin Sabet, endocrinologist at UMass Memorial Health
One of the major areas of misinformation in his work concerns GLP-1 medications, such as Ozempic.
“One of the biggest forms of misinformation around GLP-1 based medications is that taking them is an easy way out, which couldn't be farther from the truth,” said Sabet.
This belief stems from a societal misunderstanding about what causes obesity, he said, with people not being aware of the biological underpinnings determining a person’s weight regardless of their eating habits or levels of exercise.
“What they may not understand is that for someone else with a different biology, it may be impossible or more difficult or completely impossible to have a healthy weight without treatment, because their body works differently,” he said. “These medications can provide benefit, but certainly don't make it easy.”
What constitutes a healthy weight varies from person to person, and it is important to understand that weight and health are not synonymous, he said.
Sabet sees misinformed medical beliefs about GLP-1 widely circulating on social media, including inaccurate information regarding supplements, probiotics, nutrition, and treatments of thyroid disease, to name a few.
Sabet has scrolled by influencers attempting to sell supplements they say can increase levels of GLP-1 in a way that's just as effective as the medications.
As with much misinformation, Sabet said these kinds of statements contain a grain of truth, noting that certain supplements or probiotics can slightly increase GLP-1 levels, but that in no way means they have a similar effect.
Books marketed to patients claim they should be on a specific diet to treat their thyroid disease, said Sabet. Patients will come into his office asking for these, and others have already purchased supplements recommended online. “There's no evidence-based dietary restriction that should be recommended to people with thyroid disease,” he said. “There are no supplements that should be taken as a general rule to treat thyroid disease.”
The victims of misinformation
Sabet believes the way influencers present their medical advice as quick-fixes is seductive and contributes to what he describes as an unquestionable growth of medical misinformation.
“I see it on my own social media. It's always going to rise to the top in terms of social media and clicks, and eyeballs when you tell a story that makes it sound like there's a secret way to unlock health,” he said. “‘It’s quick and easy, and no one is telling you about it,’ right? People want to hear that, they want to learn about that.”
A medical misinformation chart
The Physicians Foundation’s study found 57% of respondents reported mis- and disinformation had significantly impacted their ability to provide quality care. At the same time, 50% felt highly confident in their ability to identify and correct those false beliefs.
Spiliotes feels false soundbites, like Trump’s in September, feed into peoples’ innate nature to connect two facts.
“Information taken out of context or not explained fully to individuals, to me, is what causes this kind of mis- and disinformation, and creates fear in a population,” she said.
Those who don’t have the time or the education to critically filter the medical information being fed to them are at a higher risk of believing misinformation.
“Nobody's going to tell them it's not the truth, and if you say something over and over and over again, people tend to believe it,” she said. “[They] really bear the burden of having to take in this information and not knowing where to turn, and not necessarily having the guidance from someone who they really can trust to tell them ‘This is truth, and this is fiction.’”
A 2024 study performed by Johns Hopkins Center for Health Equity researchers found participants who did not gather COVID-19 information from the government and medical professionals were 28% more likely to believe health myths. Participants with an education lower than a bachelor’s degree were 49% more likely to believe myths.
Medical misinformation is best handled by official bodies, who can present accurate information through consistent messaging, said Hamblin.
“Then that is reinforced by the boots on the ground, that continuity of care, and those relationships that patients have with their care providers to be a sounding board for any questions or concerns that come up,” she said.
Spiliotes is not particularly optimistic the spread of medical misinformation will ease, but she does believe that together, organizations and individuals can help ameliorate its effects. “Truth ultimately wins out,” she said. “It may take a while, but it ultimately wins out.”
Mica Kanner-Mascolo is a staff writer at Worcester Business Journal, who primarily covers the healthcare and diversity, equity, and inclusion industries.