Third in a series.
Official efforts to communicate the health risks of certain man-made compounds in heavily contaminated communities are falling short, according to a recent analysis.
PFAS is a class of thousands of synthetic chemicals found practically everywhere, such as in firefighting foams, stain-resistant carpets and furniture, nonstick cookware, takeout containers and microwave popcorn bags.
While most humans have a detectable amount of PFAS in their bodies from multiple sources including food, food contact materials and indoor products, according to the Centers for Disease Control and Prevention, there are millions in the United States that have been subject to significant contamination, either through work exposure or drinking water.
For the report, “Official health communications are failing PFAS-contaminated communities,” published May 10 in Environmental Health, researchers reviewed information produced by local, state and national agencies, professional societies and nongovernmental organizations geared toward the public and healthcare providers on per- and polyfluoroalkyl substances, or PFAS.
The analysis found that most official information does not evaluate the risks highly exposed communities face compared to the general population. Researchers also found that the official information doesn’t fully explain how strong scientific evidence is for certain health outcomes, though most or nearly all studies have found harm from PFAS exposure for immune, liver, reproductive, and cancer, such as kidney or testicular cancer, according to researchers. Researchers also found that the language used is often unqualified, misleading or unclear. Finally, there is a lack of material on how to reduce exposure and risk of harm.
The study concludes that immediate action needs to be taken to review and improve this messaging “intended to inform the public and health providers about the risks of PFAS exposure and guide community and medical decisions.”
Motivation for the study
Lead author Alan Ducatman, a physician and professor emeritus at West Virginia University, responded to Coastal Review by email, saying that during the first Northeastern University PFAS conference in Boston in 2018 is when he first heard a community leader express concern about how “public PFAS communications intended for clinicians or for the public were doing (unintended) harm.”
Once the concern was pointed out to him, he said it came from more directions. “It could be heard in lots of places, from different kinds of people.”
About three years ago, Ducatman said he began thinking about whether there was a useful way to consider the topic. “My first questions were what is in those public facing health communications? What message is said to clinicians specifically? How well do the communications align with the current scientific knowledge?”
The initial goal was to assess whether there was a problem, and if so, how to shed light on it, he continued. “Progress was slow at first. Clinician training is wonderful, but no one of us is as smart as all of us.”
He said that once he was joined by coauthors for the study, the pace of progress increased and led to the creation of the freely accessible online paper. Coauthors who joined him were Dr. Jamie DeWitt, a professor of pharmacology and toxicology at East Carolina University, health communicator Rebecca Fuoco and Jonas LaPier, who focused on research and data.
Fuoco, science communications officer at the Green Science Policy Institute, added that last year the National Academies of Sciences, Engineering, and Medicine held a series of online town hall meetings to discuss clinical guidance for PFAS exposure.
“Members of PFAS-contaminated communities voiced concerns that current government fact sheets and webpages unreasonably minimize PFAS health risks. Dismissive language in these materials can influence the attitudes of healthcare providers and policymakers and create more hurdles for affected communities to get the help they deserve,” Fuoco said.
DeWitt told Coastal Review that she became involved in the study because she had known Ducatman for some time and they serve as liaisons to the National Academies of Sciences, Engineering, and Medicine, PFAS clinical guidance committee.
“We also both interact with community members who express their frustration to us about health guidance,” she said, adding she also teaches medical students and know that they receive very little toxicological education.
Researchers on the results
Ducatman said that at first, he was disappointed with the results of the study.
“Surprise was a part of it, as the extent of the problem in public-facing communications was at least as great and maybe more than I had been led to expect from the expressed concern,” he said.
“Gradually, a few better health communications also became available. Those we found helpful during our review are prominently mentioned in the article,” Ducatman continued, suggesting these more useful documents be used as templates.
“They are the most important part of the article because It is much more useful to emphasize what is helpful. What remains a little surprising is that the vast majority have not yet improved that much, despite the gradual appearance of better examples to emulate,” Ducatman said.
One residual surprise, Ducatman added, is that the pace of improvement in state and federal public-facing documents remains slow, and the expressed science in so many documents greatly trails the advances in what we know about PFAS. “We naturally wonder how the most prominent problematic communications got to be the way they are. We may never know how they got that way. The key goal is to improve them.”
What stuck out most to DeWitt from the results has been emphasized in the commentary. “Uncertainty about risks tends toward language that minimizes risks. I think in other situations uncertainty leads to greater appreciation of risks.”
In North Carolina
The state has been investigating PFAS in the Cape Fear River since June 2017 and identified Chemours in Fayetteville as the company that produces the compound.
In the five years since the public got word of contaminants in the region’s drinking water, advocacy groups and state officials have responded in various ways. There have been missteps along the way.
DeWitt said North Carolina is like other states, “where I think officials try to balance fear of the risks of PFAS exposure on health with uncertainties. It’s a challenge to develop thoughtful messaging, and I think our officials did what they could given that they needed to get information out quickly after PFAS contamination became well known to the public.”
Fuoco noted that the state Department of Health and Human Services issued a letter to doctors in 2018 that discouraged blood testing for PFAS, even though the state had a wide region affected by drinking water contamination.
“Fortunately, this letter was taken offline in 2020 and replaced with an updated letter. The new letter has better messaging about blood testing, but still frames its discussion of health outcomes with language suggesting the science is preliminary or inconsistent across the board: ‘The potential for health effects from PFAS in humans is still being studied. Researchers are working to better understand how exposure to PFAS might affect people’s health. Although more research is needed, some studies of people have shown that certain PFAS may…,’” she said.
But how would busy clinicians come to know the “some studies” statement would actually be “most” or “nearly all” studies for outcomes like liver damage and reduced childhood vaccine response? Fuoco said that North Carolina residents in areas with high levels of contamination should feel empowered to advocate for themselves and their communities.
For example, they can share the accurate and helpful materials identified in the paper, such as from the Association of State and Territorial Health Officials Clinician FAQ and the clinician guidance on Silent Spring Institute’s PFAS-REACH Exchange website, with their doctors to make sure their concerns aren’t dismissed.
Benefits of the paper
For patients in high-exposure communities and the clinicians who serve them, Ducatman said he hopes the paper will empower them to do two things: “Avoid or at least recognize the worst problems in current agency documents, and, more importantly, identify useful sources they can access right now. We do provide a list. For health communicators, I hope the paper triggers reflection and honest conversations with agency leaders, leading to better official documents.”
He added its encouraging that federal agencies have asked the National Academies to convene a committee that will examine current guidance and make recommendations.
“An implication of the request is that there must be internal agency recognition that the usefulness of current communications is being questioned,” Ducatman said. “However, problems are also sufficiently evident that one wonders why obvious problematic parts are not already being removed.”
DeWitt said her hope is that the commentary will lead to better guidance for people who are worried about their health.
“I hope such guidance includes messages about what sorts of questions people could ask their physicians as well as questions that physicians could ask patients who live in PFAS-contaminated communities,” she said. “I also I hope that it leads to physicians talking more with one another to potentially discover additional associated health risks.”
Fuoco added that she hoped the study moves state and federal health officials to improve their public communications on PFAS.
“Our paper provides examples from some state agencies and nonprofit groups that are great models, so this shouldn’t be a huge undertaking,” Fuoco said. “Health communication is hard. Agencies need to walk a tightrope to convey accurate and actionable information without engendering undue fear. Often, they overcorrect and tip the balance toward understating the risks.”
Ducatman noted that the paper acknowledges that health communications are truly difficult.
“Public health agencies have ever-expanding jobs, multiple demands on resources and priorities, and shrinking funds in terms of constant dollars for most missions. The authors understand that. There is no goal to increase agency burdens at a time of too much mission and too little support,” he said. “The agencies should know that they have potential partners to help out. That is to say, it is an important problem, and public health agencies are generally good at finding allies who can help with important problems.”
He added that the quotations from different agency materials become criticisms only because they speak for themselves in ways that are problematic and have not helped affected communities, including exposed workers, whose needs are often ignored. The opportunity of recognizing the problems is that improvements are achievable, that there are good templates already available, and that both stakeholders and scientists can be engaged for support.
After the National Academies’ guidance on current federal communications comes out, “it is likely to be analytic and useful, but it is less likely to tell agencies exactly what to do. I hope agency leaders will look for ways to improve now,” he said. “A strong consideration is partnership with community leaders and scientists who can help.”
State, federal reactions
Environmental Protection Agency Deputy Press Secretary Tim Carroll told Coastal Review that the agency understands that for far too long, communities across the United States had suffered from exposure to PFAS pollution.
“That’s why EPA is taking action through our PFAS Strategic Roadmap – EPA’s bold, strategic, and whole-of-Agency approach to protect public health and the environment from the impact of these chemicals. The Roadmap sets timelines by which EPA plans to take specific actions and commits to bolder new policies to safeguard public health, protect the environment, and hold polluters accountable,” Carroll said in an email response.
“Addressing PFAS contamination is a critical part of EPA’s mission to protect human health and the environment. This important mission cannot be achieved without effectively communicating with communities, individuals, businesses, the media, and Tribal, state, and local partners about the known and potential health risks associated with these chemicals. When EPA communicates risk, it is the Agency’s goal to provide meaningful, understandable, and actionable information to many audiences. EPA looks forward to reviewing this new study to ensure the Agency continues to meet this goal,” Carroll continued.
“New scientific information increasingly highlights that negative health effects may occur at much lower levels of exposure to the PFAS chemicals PFOA and PFOS than previously understood. EPA is committed to science-based approaches to protect public health from exposure to these chemicals, including by quickly updating drinking water health advisories with new peer-reviewed approaches and expeditiously developing National Primary Drinking Water Regulations for these contaminants,” he said.
Bailey Pennington, a spokesperson with the North Carolina Department of Health and Human Services, told Coastal Review that DeWitt and her colleagues’ paper included important points.
“Communicating about health effects of PFAS exposure is challenging, but it is important to clearly state that there is a substantial and growing body of research indicating that PFAS are harmful to human health. This includes the list of studies provided on our PFAS webpage,” Pennington said. “We also appreciate the need to have different communications for the general public versus more highly exposed communities, such as those near the Chemours plant and downstream of the plant in the lower Cape Fear Region.”
She added that the department would continue reviewing and updating its communications “as we learn more and will consider the recommendations in this article as we do so.”
Although more research is needed, some human health studies have shown that certain PFAS may affect growth, learning, and behavior of infants and older children, lower a woman’s chance of getting pregnant, interfere with the body’s natural hormones, increase cholesterol levels, affect the immune system and increase the risk of certain types of cancer.
“Whether or not you develop health problems after being exposed to PFAS depends on how much, how often, and for how long you are exposed, as well as which PFAS you are exposed to. Personal factors including age, lifestyle, and overall health can impact your body’s ability to respond to chemical exposures,” she said. “Scientists are actively studying the health effects of PFAS to learn more.”
The department continues to work with various federal and state partners to review all new health and toxicity information about these compounds and shares new information with communities as it becomes available, Pennington added. The work includes the ongoing Agency for Toxic Substances and Disease Registry (ATSDR) Exposure Assessments and Multi-Site Health Studies and North Carolina State University’s GenX Exposure Study.
Laura Leonard, public information officer for the state Department of Environmental Quality, told Coastal Review that the department worked closely with the Department of Health and Human Services to provide PFAS information to the public. “We are continuously working to provide the most relevant, accessible information to help impacted communities understand their options and make decisions.”