As artificial intelligence infiltrates virtually every aspect of life, more states in the U.S. are seeking to regulate (or at least monitor) its use. Many are passing legislation, issuing policy rules or forming committees to inform those decisions. In some cases, that includes health insurance, where AI holds great promise to speed and improve administration but also brings potential for peril, including racial bias and omissions inherent in formulas used to determine coverage approvals.

Meanwhile, major health insurers Humana, Cigna, and UnitedHealth all face lawsuits alleging  that the companies improperly developed algorithms that guided AI programs to deny health care. The suit against Cigna followed a ProPublica story revealing “how Cigna doctors reject patients’ claims without opening their files.” The class action suits against United Health and Humana followed an investigative series by STAT, in which reporters revealed that multiple major health insurers had used secret internal rules and flawed algorithms to deny care.

Journalists should pay attention to guardrails governments are seeking to erect to prevent problematic use of AI — and whether they’ll ultimately succeed as intended. Both federal and state governments report they are working to prevent discrimination, a broad concern as AI systems become more sophisticated and help administrators make decisions, including what’s covered by a policy. Proposed state legislation and regulatory guidelines aim to require health insurance companies to be more transparent about how their systems were created, what specific data sets are fed into those systems and how the algorithms that instruct a program’s decision-making are created.

We’ve created this guide to help journalists understand the nascent regulatory landscape, including proposed state laws; which regulators are compiling and issuing guidelines; and what researchers have learned so far.                                       

Government efforts to regulate AI use among health insurers

Who regulates health insurers, and how, depends largely on the type of health insurance itself. Congress and the Biden administration are stepping up efforts to form a blueprint for AI use, including in health insurance.

State-level resolutions and legislation

For local journalists, this complex landscape provides an avenue rich with potential reporting opportunities.

According to the National Conference of State Legislatures, at least 40 states introduced or passed legislation aimed at regulating AI in the 2024 legislative session through March 17, with at least half a dozen of these actions tied to health care. Six states, Puerto Rico and the Virgin Islands adopted resolutions or enacted new laws.

That’s on top of 18 states and Puerto Rico’s adoption of resolutions or legislation tied to AI in 2023, according to data from the NCSL. Many states are modeling regulations to include guidance from the National Association of Insurance Commissioners (NAIC) issued in December 2023.

The Colorado Division of Insurance, for example, is mulling how to apply new rules adopted by the state legislature in 2021, which are designed to be a check for consumers on AI-generated decisions. It was the first state to target AI use in insurance, according to Bloomberg.

Colorado’s insurance commissioners have so far issued guidance for auto and life insurers under the statute. In recent months, commissioners held hearings and called for written comments to help form its approach to applying the new rules to health insurers, according to materials on the agency’s website.

Colorado’s legislation seeks to hold “insurers accountable for testing their big data systems – including external consumer data and information sources, algorithms, and predictive models — to ensure they are not unfairly discriminating against consumers on the basis of a protected class.”  In Colorado, protected class includes race, color, religion, national origin/ancestry, sex, pregnancy, disability, sexual orientation including transgender status, age, marital status and familial status, according to the state’s Civil Rights Division.

There isn’t yet a firm timeline for finalizing these rules for health insurance because the agency is still early in the process as it also works on life insurance, Vincent Plymell, the assistant commissioner for communications and outreach at the Colorado Division of Insurance, told The Journalist’s Resource.

In California, one bill sponsored by the California Medical Association would “require algorithms, artificial intelligence, and other software tools used for utilization review or utilization management decisions” be “fairly and equitably applied.” Earlier language that would have mandated a licensed physician supervise AI use for decisions to “approve, modify, or deny requests by providers” was struck from the bill.

In Georgia, a bill would require coverage decisions using AI be “meaningfully reviewed” by someone with authority to override them. Illinois,  New York,  Pennsylvania, and Oklahoma are also among states that introduced legislation tied to health care, AI and insurance.

Several states including Maryland, New York, Vermont and Washington state have issued guidance bulletins for insurers modeled after language crafted by the NAIC. The model bulletin, issued in December 2023, aims to set “clear expectations” for insurers when it comes to AI. The bulletin also has standard definitions for AI-related terms, like machine learning and large language models.

A group of NAIC members is also developing  a survey of health insurers on the issue.      

One concern insurers have is that rules may be different across states, Avi Gesser, a data security partner at the law firm Debevoise & Plimpton LLP, told Bloomberg Law.

“It would be a problem for some insurers if they had to do different testing for their algorithm state-by-state,” Gesser said in a November 2023 article. “Some insurers may say, ‘Well, maybe it’s not worth it—maybe we won’t use external data, or maybe we won’t use AI.’”

It’s useful for journalists to read published research to learn more about how artificial intelligence, insurers and health experts are approaching the issue technically, politically and legally. To help, we’ve curated and summarized several studies and scholarly articles on the topic.      

Research Roundup:    

Responsible Artificial Intelligence in Healthcare: Predicting and Preventing Insurance Claim Denials for Economic and Social Wellbeing
Marina Johnson, Abdullah Albizri and Antoine Harfouche. Information Systems Frontiers, April 2021.

The study: The authors examine AI models to help hospitals identify and prevent denials of patient insurance claims, aiming to cut the costs of appeals and reduce patient emotional distress. They examine six different kinds of algorithms to recommend the best model for predicting claim rejections and test it in a hospital. The authors use “white box” and “glass box” models, which reveal more data and mechanisms in an AI program than “black box” models, to develop what they label a Responsible Artificial Intelligence recommendation for an AI product to solve this problem.

In developing the proposed solution, the authors take into account five principles: transparency, justice, a no-harm approach, accountability and privacy.

To develop their proposal, the researchers used a dataset of 57,458 claims from a single hospital submitted to various insurance companies. They caution that their experiment involved using data from a single hospital.

The findings      
The solution the authors propose seeks to identify, in part, errors in coding and billing, medical needs, and mismatched codes for services and procedures to a patient’s diagnosis. Once flagged by the system the error can be fixed before submitting to an insurance company. That may spare the insured patient from going through the appeals process. The technical solution proposed by the authors “delivers a high accuracy rate” at about 83%, they write.

They recommend future research use data from insurance companies in which “many providers submit claims, providing more generalizable results.”

The authors write: “Insured patients suffering from a medical condition are overburdened if they have to deal with an appeal process for a denied claim. An AI solution similar to the one proposed in this study can prevent patients from dealing with the appeal process.”

Fair Regression for Health Care Spending
Anna Zink and Sherri Rose. Biometrics, September 2020.

The study: In this study, the authors examine and suggest alternative methods to predict spending in health insurance markets so insurers can provide fair benefits for enrollees in a plan, while more accurately gauging their financial risk. The authors examine “undercompensated” groups, people who are often underpaid by health insurance formulas, including people with mental illness or substance abuse disorders. They then suggest new tools and formulas for including these groups in regression analysis used to calculate fair benefits for enrollees. Regression analysis is a way of parsing variables in data to glean the most important factors in determining risk, what the impact is and how robust those factors are in calculations used to predict fair benefits and coverage.   

The findings: In their analysis, the authors use a random sample of 100,000 enrollees from the IBM MarketScan Research database in 2015 to predict total annual expenditures for 2016. Almost 14% of the sample were coded with a diagnosis of mental health and substance abuse disorder. When insurance companies “underpredict” spending for groups like these, “there is evidence that insurers adjust the prescription drugs, services, and providers they cover” and alter a plans’ benefit design “to make health plans less attractive for enrollees in undercompensated groups.”

The authors propose technical changes to formulas used to calculate these risks to produce what they find are more inclusive results for underrepresented groups, in this case those categorized as having mental health and substance use disorders. One of their suggested changes meant a 98% reduction in risk that insurers would be undercompensated, likely leading to an improvement in coverage for that group. It only increased insurer risk tied to predicting cost for enrollees without mental health and substance use disorders by about 4%, or 0.5 percentage points. The results could lead to “massive improvements in group fairness.”

The authors write: “For many estimators, particularly in our data analysis, improvements in fairness were larger than the subsequent decreases in overall fit. This suggests that if we allow for a slight drop in overall fit, we could greatly increase compensation for mental health and substance use disorders. Policymakers need to consider whether they are willing to sacrifice small reductions in global fit for large improvements in fairness.”

Additional reading: The authors outline this and two other studies tied to the topic in a November 2022 policy brief for the Stanford University Human Centered Artificial Intelligence group.

The Imperative for Regulatory Oversight of Large Language Models (or Generative AI) in Healthcare
Bertalan Meskó and Eric J. Topol. NPJ Digital Medicine, July 2023.

The article: In this article, the authors argue a new regulatory category should be created specifically for large language models in health care because they are different from previous artificial intelligence mechanisms in scale, capabilities and impact. LLMs can also adapt their responses in real-time, they note. The authors outline categories regulators could create to harness — and help control — LLMs.

By creating specific prescriptions for managing LLMs, regulators can help gain the trust of patients, physicians and administrators, they argue.

The findings: The authors write that safeguards should include ensuring:
• Patient data used for training LLMs are “fully anonymized and protected” from breaches, a “significant regulatory challenge” because violations could run afoul of privacy laws like the Health Insurance Portability and Accountability Act (HIPAA.)
• Interpretability and transparency for AI-made decisions, a “particularly challenging” task for “black box” models that use hidden and complex algorithms.
• Fairness and safeguards against biases. Biases can find their way into LLMs like Chat GPT-4 during model training that uses patient data, leading to “disparities in healthcare outcomes.”
• Establishing data ownership, something that’s hard to define and regulate.
• Users don’t become over-reliant on AI models, as some AI models can “hallucinate” and yield errors.

The authors write: “LLMs offer tremendous promise for the future of healthcare, but their use also entails risks and ethical challenges. By taking a proactive approach to regulation, it is possible to harness the potential of AI-driven technologies like LLMs while minimizing potential harm and preserving the trust of patients and healthcare providers alike.”

Denial—Artificial Intelligence Tools and Health Insurance Coverage Decisions
Michelle M. Mello and Sherri Rose, JAMA Health Forum, March 7, 2024

The article: In this Forum article, the authors, both professors of health policy,   call for national policy guardrails for AI and algorithmic use by health insurers. They note investigative journalism helped bring incidents to light in cases tied to Medicare Advantage as well as congressional hearings and class-action lawsuits against major health insurance companies.

The authors highlight and describe class-action suits against UnitedHealthcare and Humana that allege the companies pressured managers to discharge patients prematurely based on results from an AI algorithm. They also note Cigna, another insurance firm, is facing a class action suit alleging it used another kind of algorithm to deny claims at an average of 1.2 seconds each.
Algorithms can now be trained “at an unprecedented scale” using datasets such as Epic’s Cosmos, which represents some 238 million patients, the authors note.  But even developers may not know the mechanics behind — or why — an AI algorithm makes a recommendation.

The authors write: “The increased transparency that the CMS, journalists, and litigators have driven about how insurers use algorithms may help improve practices and attenuate biases. Transparency should also inspire recognition that although some uses of algorithms by insurers may be ethically unacceptable, others might be ethically obligatory. For example, eliminating the use of (imperfect) algorithms in health plan payment risk adjustment would undermine equity because adjusting payments for health status diminishes insurers’ incentive to avoid sicker enrollees. As the national conversation about algorithmic governance and health intensifies, insurance-related issues and concerns should remain in the foreground.”

Additional resources for journalists

• This research review and tip sheet from The Journalist’s Resource offers a primer, definitions and foundational research on racial bias in AI in health care. 

• The Association of Health Care Journalists  on its website features a guide to how health insurance works in each state. Created by Georgetown University’s Center on Health Insurance Reforms and supported by the Robert Wood Johnson Foundation, the guide provides useful statistics and resources that give journalists an overview of how health insurance works in each state. That includes a breakdown of different kinds of insurance that serve the population in each place, including how many people are covered by Medicare, Medicaid and employer-backed insurance. The guide can help inform journalist’s questions about the health insurance landscape locally, says      Joe Burns, the beat leader for health policy (including insurance) at AHCJ.

• The National Association of Insurance Commissioners has a map of which states adopt its model bulletin as well as a page documenting the work of its Big Data and Artificial Intelligence working group.

• Congress.gov features a clickable map of state legislature websites.

•The National Conference of State Legislatures tracks bills on AI for legislative sessions in each state. This list is current as of March 2024.

• The National Center for State Courts links to the websites of state-level courts.

• Here’s the Office of the National Coordinator for Health Information Technology’s final rule and fact sheets under the 21st Century Cures Act.

• Here’s a video and transcripts of testimony from a Feb. 8 U.S. Senate Finance hearing titled “Artificial Intelligence and Health Care: Promises and Pitfalls.”    

• KFF, formerly called the Kaiser Family Foundation, maintains a map showing what percentage of each state’s population is covered by health insurance.

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Researchers are learning more about the adverse impacts on the environment and human health of PFAS, shorthand for per- and polyfluoroalkyl substances. Nicknamed “forever chemicals” because they are difficult to destroy, they are widely used in everything from cosmetics to clothing to firefighting foam. Government agencies are picking up the pace to regulate their use.

Tap water is one of the main ways humans encounter PFAS. At least 45% of tap water in the United States is contaminated with one or more PFAS, researchers from the U.S. Geological Survey (USGS) estimate in a study published this summer.

The PFAS issue touches many journalistic beats, including business, consumer, environment, health, infrastructure, legal and local services. So chances are good that if you’re a journalist, you’ll encounter PFAS in your reporting.

To help inform news coverage of the topic, we enlisted advice from researchers and journalists including Kelly Smalling, a research chemist at the U.S. Geological Survey and lead author of the aforementioned study; Linda Birnbaum, the former director of the National Institute of Environmental Health Sciences and the National Toxicology Program; E.A. Crunden, a reporter for Politico’s E&E News who covers water issues; Barbara Moran, a climate and environment correspondent at WBUR in Boston who has reported extensively on PFAS; Rebecca Fuoco, the director of science communications at Green Science Policy Institute; and Jamie DeWitt, a professor of pharmacology and toxicology at East Carolina University who follows PFAS closely.

1. Start with the basics.

Journalists should be aware that PFAS are “a complicated class of over 12,000 man-made chemicals with distinct properties making them resistant to degradation and persistent in the environment,” Smalling said in an email interview. “They have been manufactured since the 1940’s but until recently, information on health implications were limited.” 

Journalists also should know and note why PFAS are nicknamed “forever chemicals.” It’s because they stick around for a long time due to their structure. They have a chain of linked carbon and fluorine atoms, with this combination being one of the strongest bonds in chemistry. By contrast, proteins and sugar compounds have relatively weak bonds, allowing the body to easily disassemble them. Manmade PFAS compounds don’t degrade under typical conditions in the environment or the body.

The compounds have likely wound their way into the environment in the decades since their invention, including into sources of water used for drinking worldwide. In recent decades, certain kinds of PFAS chemicals have been linked to serious health issues, including potentially higher risk for some cancers, autoimmune diseases, thyroid issues, liver disease, fetal complications, vaccine resistance and high cholesterol, among other concerns.

It’s worth “several hours of your time one day to bone up on the basics,” especially if you don’t have a science or health coverage background, says WBUR’s Moran.

This page from the Interstate Technology Regulatory Council, a state-led coalition with public and private members from all 50 states and Washington D.C. is a good place to start, she says.

“It contains a lot of straight-up, detailed PFAS info, and even an introductory video to get people started,” Moran notes. 

Many universities with scientists who research PFAS also have good resources for journalists, according to Dewitt, Moran and Crunden. Moran recommends Northeastern University’s PFAS Project Lab website. It includes news, background, a newsletter and information on upcoming conferences. DeWitt recommends the North Carolina State Center for Environmental Health Effects of PFAS or The University of Rhode Island’s STEEP (Sources, Transport, Exposure and Effects) website.

For health-specific information, start with the comprehensive 2022 National Academies report from the National Academies of Sciences, Engineering, and Medicine. The nonprofit Silent Spring Institute “can also be very helpful, and they are doing interesting research on the long-term health effects of drinking PFAS-contaminated drinking water,” Moran says.

The EPA and other agencies offer a plethora of information on government studies and upcoming rules. Those include the Food and Drug Administration,  the Centers for Disease Control and Prevention and the Defense Department.

2. Note what’s happening with PFAS regulation on a national and local level.

In March, the U.S. Environmental Protection Agency took a major step by proposing limits on six kinds of PFAS in drinking water under the national Safe Water Drinking Act. If enacted, the rule would cover the first new contaminant under the act since the 1990s. The EPA intends to issue the final rules by the end of the year. The new regulations, if finalized, won’t apply to private wells, notes Birnbaum.

The lower levels will likely require more than half of municipal water systems to install filtration devices, she explained in an e-mail interview.

Though the proposed rule would be the first to regulate PFAS in drinking water at a national level, half of all U.S. states already either regulate or are moving to regulate PFAS in drinking water, according to Safer States, a public advocacy group that tracks state legislation and policy.

3. Be specific and careful with your terminology.

It’s important to note that the umbrella term PFAS covers  more than 12,000 kinds of man-made chemicals,  an omission that pops up in some coverage, said Crunden.

The EPA proposed rule, for instance, applies to six kinds of those 12,000 PFAS chemicals, “and even within that there are thresholds” for the other PFAS that the EPA seeks to regulate as mixtures, Crunden said in an email interview.

Specificity also is important when reporting on the health risks of PFAS. “Any strong PFAS reporting lays out what we do know versus what we don’t re: the science and health implications,” Crunden explained. “Reporters should not buy into saying 12,000+ chemicals ‘cause cancer’; that simply has not been proven yet and research is limited. But good PFAS journalism should see you comfortably empowered to say at least two chemicals are strongly linked to cancer, and that there are concerns about the broader family, which also pose a number of other health issues.”

Another terminology clarification: Toxins is the correct term for naturally occurring poisonous substances, Crunden explained, so it’s not accurate to refer to PFAS as toxins. PFAS are man-made, which makes them toxicants, not toxins. “Toxic chemicals” would also be an accurate way to describe PFAS.

4. Keep your accuracy radar on high and double-check what sources say.

“A good way to get a feel for accuracy is to sense how much someone hedges their statements,” Crunden noted. “Advocates, while well-meaning, will tend to oversell something (remember, saying something ‘causes cancer’ is an enormous statement and VERY hard to prove scientifically). Industry members, by contrast, will downplay things significantly.”

You can find tips on how to characterize research findings accurately in this tip sheet from The Journalist’s Resource.

Even scientists can make mistakes, especially those not steeped in PFAS research, says Jamie DeWitt, a professor of pharmacology and toxicology at East Carolina University who follows PFAS closely.

“Listen very carefully, because in the world of PFAS and some worlds of science, some words sound very similar,”  DeWitt said. “Make sure to check what your scientists say. Because I’ve seen some scientists get interviewed on the topic, who aren’t really engaged in PFAS science. And they’ve made some really simple mistakes.”

5. Befriend a toxicologist.

Find a public health, public works or university toxicologist familiar with PFAS and ask to sit down with them, DeWitt, Crunden and Moran recommend – especially one who specializes in drinking water.

Many cities and towns have someone whose job it is to know the rules and the science. If you can’t find a local government toxicologist, find someone at a university who can be your  “check on things,” Moran says.

That helps with PFAS science, whether it be tied to the environment or health, Dewitt says.

“I don’t think that necessarily journalists get things wrong, but they might not talk to scientists to have all of the details correct because PFAS science is really complex,” DeWitt says.

Universities with research departments often have PFAS experts that can be good sounding boards, even if you’re not quoting them, Crunden notes.

“Fact-check everything someone tells you and normalize having some go-to scientist sources you trust,” Crunden said. “Researchers attached to universities are some of the most reliable, in my opinion.”

6. Monitor academic research, keeping in mind that much of it never makes it into the news media.

The pace of research is picking up in areas including human health, techniques to better destroy or degrade PFAS chemicals, and in gathering data for where they are most pervasive in the environment, water and other products.

Still, just a fraction of scientific and academic research makes it into the media, according to a study published in July 2023 in the journal Environmental Health led by researchers from the nonprofit Green Science Policy Institute who studied published papers on human health and PFAS.

Of 273 peer-reviewed epidemiological studies on PFAS and human health  published between 2018 and 2020, fewer than 8% issued a press release, the researchers found. Studies with press releases were 20 times more likely to wind up in news stories.

A good practice is to create alerts on services like PubMed and Eureka Alert! Many scientific studies are published behind a firewall. But journalists often can get access to scientific papers for free – if they know how to ask. This piece from The Journalist’s Resource outlines how to set up free accounts with several top academic journal publishers.

This research roundup and explainer, published as a companion to this tip sheet, summarizes several studies on where PFAS is found in drinking water geographically, health impacts, the efficacy of consumer water filters, new methods of destroying PFAS, and racial disparities in PFAS exposure.

“As papers are published, you can go through them to see if anything stands out to you,” says Fuoco, the lead author of the Green Science study whose full-time job is to publicize PFAS studies on human health. “And there’s always a corresponding author who has contact information.”

7. Go to a public water board or local government meeting where PFAS is being discussed, or attend state hearings.

As with any topic, some of the best story ideas come from meeting people you wouldn’t normally encounter just working the phones or doing online research, Moran says.

“If your state is considering legislation, try to attend the hearings or watch or listen to them, because that’s where you get good story ideas,” she says.

One way to communicate the situation clearly is to focus on a linear storyline, such as an area where water is provided through public wells, which are less studied and regulated than municipal water systems. A single water system, community or family’s story can be a good way to “wrap your head around it,” Moran says.

For journalists interested in covering PFAS legislation as a statewide issue, Moran recommends looking at Safer State’s 2023 website of current and anticipated actions across the country.

The National Conference of State Legislatures has state-by-state information on PFAS and drinking water. And the map and key issue page from the advocacy group Environmental Working Group are also good places to start.

Reporting resources

Information from the EPA and other U.S. government agencies:

Start with the main PFAS page, an explanation of PFAS chemicals, the agency’s “strategic roadmap” for PFAS chemicals and the page outlining materials tied to the draft regulation announced in March.

Also see this March report from the White House National Science and Technology Council across agencies.

This graphic from the Agency for Toxic Substances and Disease Registry shows the “PFAS family tree.”

The EPA also offers information on:

• Water filter use and steps consumers can take to cut their PFAS exposure
• Water testing
• Health advisories
• Long-term health effects and environmental risks
• Details of its fifth water•testing efforts under the agency’s unregulated contaminant monitoring rule which will provide information on 29 kinds of PFAS chemicals
• Comments on the proposed drinking water rule can be found on Regulations.gov. Sort through to find a local community, business, government or other entities. Often, the commentary has contact information for the author or authors.

Information on individual U.S. states:

• The nonprofit Safer States has information and maps on PFAS for the status of regulation in each state.
• The advocacy nonprofit Environmental Working Group offers a key issue page and interactive map.
• Bloomberg’s PFAS activity tracker keeps up on litigation, regulation and other changes.
• The Interstate Technology Regulatory Council has primers, videos and more.
• You’ll find links to drinking water agencies in each state from the Association of Drinking Water Administrators.

Other useful information:

• The American Water Works Association’s statement on PFAS and the EPA proposed regulation
• Bluefield Research, a Boston-based consulting firm

• The European Chemical Agency’s proposal to severely restrict PFAS use
• Canada’s draft state of PFAS report

• The American Chemistry Council’s webpage on PFAS chemicals

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If it feels like news coverage of the compounds colloquially named “forever chemicals” is everywhere, there’s a reason: The pace of research and likely government regulation for PFAS, short for perfluoroalkyl and polyfluoroalkyl substances, is accelerating.

In March, the U.S. The Environmental Protection Agency proposed limits on six PFAS in drinking water under the national Safe Water Drinking Act. If enacted, the rule would cover the first new contaminant under the act since the 1990s. The EPA intends to issue the final rules by the end of the year. The move is part of the Biden administration’s plans to fight PFAS pollution.

PFAS contamination in air, soil and water is a worldwide problem that many governments and agencies have begun addressing, including the European Union,  Canada and Japan.

Journalists would do well to educate themselves on PFAS because the issue now touches almost every beat: business, consumer, environment, health, infrastructure, legal and local municipalities that include water utilities. That’s why we created this explainer and research roundup. (For more on covering PFAS, see our related tip sheet, which includes a list of data resources.)

Let’s start with the basics. What are PFAS?

PFAS are a group of more than 12,000 man-made chemicals and compounds used in all kinds of products since the 1940s, according to the EPA’s master list. 3M, which created the first PFAS, began selling it to DuPont in the 1950s for use in nonstick cookware. PFAS compounds stave off heat, grease, oil and water. Manufacturers use or have used versions of them in products, including firefighting foam, construction materials, non-stick cookware, cosmetics, clothing, and food containers, to name a few. 

PFAS are made up of a chain of linked carbon and fluorine atoms. Because the man-made compounds don’t degrade easily in the environment — or the human body — they have earned the “forever chemicals” nickname.    

The most studied types of PFAS, are perfluorooctanoic acid (PFOA) and perfluorooctane sulfonic acid (PFOS). Both were mostly phased out in the mid-2000s by the manufacturers, according to the EPA. Yet they remain in the environment and find their way into drinking water from contaminated sources including surface areas. The EPA is targeting four other chemicals that when used in combination are designed to replace PFOA and PFOS in some consumer and industrial products. These mixtures can pose a health risk ”greater than each chemical on its own,” according to the EPA.

Those chemicals, made up of fewer carbon atoms, “are more quickly eliminated from the human body than PFOA and PFOS,” according to an EPA fact sheet. “They are still persistent in the environment.”

In recent decades, certain PFAS  have been linked to numerous health issues, including potentially higher risk for some cancers, autoimmune diseases, thyroid issues, liver disease, fetal complications, vaccine resistance and high cholesterol, among other concerns. Even very small amounts of certain kinds of PFAS may pose health risks over a lifetime.

“We are all contaminated with PFAS, and nearly all of our drinking water is also contaminated,” said Linda Birnbaum, the former director of the National Institute of Environmental Health Sciences and the National Toxicology Program in an email to The Journalist’s Resource.

Researchers from the U.S. Geological Survey in August 2023 published a paper estimating that at least 45% of tap water in the U.S. contains at least one or more types of PFAS. Their study covers both tap water for municipal systems as well as private wells and rural drinking water systems. That’s important to note, as the EPA’s proposed rules do not include private wells.

“If the average American is worried about the quality of their drinking water, they can use this and other studies to get informed, evaluate their own personal risk and reach out to their local health officials about testing or treatment,” Kelly Smalling, lead author of the study and a research chemist at the U.S. Geological Survey, said in an email interview.

A 2020 study from the watchdog nonprofit Environmental Working Group (summarized below) estimates more than 200 million people — nearly two-thirds of Americans — have tap water contaminated with a mixture of the PFAS compounds at concentrations exceeding 1 parts per trillion, or ppt. That’s the equivalent of about one drop of PFAS in 20 Olympic sized swimming pools.

Research is “still ongoing to determine how different levels of exposure to certain PFAS may lead to adverse health outcomes,” according to the EPA.    

PFAS chemicals can last in the human body for a long time. Some have a half-life, or the time it takes the body to cut the presence of a substance to about half, of about eight years. They are mainly removed from the body by excretion, mostly through urine.      

What is the state of PFAS regulation in the United States?

There are currently no federal regulations for PFAS in drinking water.

But half of all U.S. states already either regulate or are moving to put limits on certain kinds of PFAS, according to Safer States, a public advocacy group that tracks state legislation and policy. The National Association of State Legislatures has state-by-state information on PFAS and drinking water.

And EWG tracks PFAS in drinking water across the country. It has data and an interactive map highlighting its findings. As of June 2022, EWG estimates some 2,858 locations in all 50 states, Puerto Rico and Guam have contaminated drinking water.

In 2016, the EPA issued an advisory to keep the combined levels of PFOA and PFOS in drinking water at 70 parts per trillion, or ppt, either separately or combined.

The March 2023 proposed national rule was released under  a 2019 formal PFAS action plan that also includes potentially establishing drinking water standards., and an update to that plan in 2020 that includes calls for establishing what’s called a maximum contaminant level (MCL) for PFOA and PFOS in drinking water. And as of July 1, 2023, 180 kinds of PFAS must be reported to the EPA’s Toxic Release Inventory program, which tracks the release of chemicals from industry and government.

The levels in the proposed drinking water rule announced in March call for levels far below that, at 4 ppt, for PFOA and PFOS, the lowest level most labs can detect for these two most studied kinds of PFAS. A “hazard index” is proposed to regulate the remaining four compounds commonly blended together and used as replacement chemicals for PFOA and PFOS.  They are: Perfluorononanoic acid (PFNA), hexafluoropropylene oxide dimer acid (HFPO-DA, commonly known as GenX Chemicals),  Perfluorohexane sulfonic acid (PFHxS) and Perfluorobutane sulfonic acid (PFBS).

If finalized, the proposed regulation would mandate public water systems monitor, notify the public and bring down the level of the PFAS chemicals to the new standards. 

In June 2023, 3M announced a preliminary $10.3 billion settlement with thousands of public water suppliers that had sued over PFAS contamination and announced it planned to stop making PFAS chemicals by 2025. (It had already agreed to “phase out” some forms of PFAS in 2000.) The 3M settlement announcement followed a similar $1.2 billion announcement from DuPont, Chemours and Corteva.

But 22 attorneys general asked a judge in late July to block the 3M settlement saying it doesn’t do enough to resolve claims and is too restrictive on how cities and towns can use the funds, Politico reported.

In a regulatory filing with the U.S. Securities and Exchange Commission, 3M listed details of the proposed settlement including what systems are eligible. It’s worth a look at the public information for journalists searching for story ideas or information about specific communities and the settlement.   

How much does it cost to remove PFAS?

Many water utilities will have to improve filtration and systems to reduce the levels of PFAS in drinking water, especially in states that haven’t broached their own regulations already. The proposed EPA drinking water rule does not apply to private wells.

Because the chemicals are difficult to eradicate, upgrading water systems will be expensive.

The 2021 Infrastructure Investment and Jobs Act provides about $9 billion in funds over five years tied to PFAS, according to the White House. According to an EPA fact sheet, that breaks down to:
• $4 billion through the Drinking Water State Revolving Funds, including a requirement states earmark 25% for “disadvantaged communities or public water systems serving fewer than 25,000 people.”
 • $5 billion as grants via the Emerging Contaminants in Small or Disadvantaged Communities (EC-SDC) Grant Program, which promotes “access to safe and clean water in small, rural, and disadvantaged communities while supporting local economies” In February 2023, the EPA announced the first $2 billion of this funding was available.

Still, some communities worry that the federal funding is insufficient. The EPA estimates it will cost utilities $772 million to $1.2 billion to comply if the proposed rule is finalized. Utilities might have to increase water bills to pay for the costs, not a popular move for any municipal budget.

The American Water Works Association, whose members include public utilities, said in March it expects the cost to reach $3.8 billion annually for utilities to install recommended treatment systems for PFOA and PFOS removal, citing an analysis undertaken for the group by the firm Black & Veatch.

The EPA also estimated economic benefits of $908 million to be $1.2 billion, according to a report from Bloomberg Law.

“One of the important things that the EPA does when it puts out a draft rule like this, is to consider the economic costs and benefits,” says Jamie DeWitt, a professor of pharmacology and toxicology at East Carolina University who follows PFAS closely. “While the cost might translate to individual homeowners in terms of an increase in their water bill, it also means that there will be fewer economic costs imposed on individuals and societies due to the chronic diseases that have been linked to PFAS exposures.”

What have journalists been missing?

PFAS chemicals weren’t widely studied in the environment until the early 2000s, notes a fact sheet from the nonprofit Interstate Technology and Regulatory Council, a state-led coalition with public and private members from all 50 states, and Washington D.C. Since then, it’s been a “very active area of research,” according to the group. 

Yet many studies on PFAS don’t make it into media coverage unless researchers issue a press release, according to a study published in July 2023 in the journal Environmental Health, led by researchers from the nonprofit Green Science Policy Institute.

Of 273 peer-reviewed epidemiological studies on PFAS and human health  published between 2018 and 2020, fewer than 8% issued a press release, the researchers found. Those that issued a release were 20 times more likely to draw attention from journalists.

The number of important studies that appear to be overlooked was surprising, says lead author Rebecca Fuoco, whose full-time job is to publicize PFAS studies. 

“When studies are unpublicized, that is, not covered in the media, they’re also reaching fewer scientists,” Fuoco says. “We found a correlation between media coverage and scholarly citation. There were studies that my scientist colleagues had not seen or didn’t know about, which was even more shocking to see.”

It’s important to pay attention to the research when covering PFAS issues. To get you started, here are summaries of six recent studies along with suggestions of related studies for you to read. The studies cover where PFAS is found in drinking water geographically, health impacts, the efficacy of consumer water filters, new methods of destroying PFAS, and racial disparities in PFAS exposure.

Research Roundup

Population-Wide Exposure to Per- and Polyfluoroalkyl Substances from Drinking Water in the United States
David Q. Andrews and Olga V. Naidenko. Environmental Science & Technology Letters, October 2020.

The study: This research from the Environmental Working Group analyzes PFAS and PFOS found in drinking water in the United States using publicly available data from the EPA, the U.S. Geological Survey, Colorado, Kentucky, Michigan, New Hampshire, New Jersey, North Carolina and Rhode Island. The researchers estimate the number of people in the United States who may be exposed to combined PFAS in drinking water at concentrations above 1 part per trillion, or ppt (equivalent to 1 nanogram per liter) and above 10 ppt.

The findings: The EWG scientists estimate more than 200 million people — nearly two-thirds of Americans — have tap water contaminated with a mixture of the PFAS compounds at concentrations exceeding 1 ppt, in part because PFAS chemicals are “nearly ubiquitous” in surface water, the predominant source of drinking water in the U.S. They based their estimates on a total U.S. population of approximately 330 million, with 297 million served by community water systems and 241 million people served by systems tested in 2013-2015 through the EPA’s Unregulated Contaminant Monitoring Program. The researchers also estimate between 18 million and 80 million people may be exposed to combined PFOA and PFOS concentration in drinking water at concentrations above 10 ppt.

The authors write: “The overall prevalence of PFAS in drinking water, revealed by testing with sensitive analytical limits, suggests that the majority of large metropolitan surface water systems in the U.S. may contain detectable PFAS. Conventional drinking water treatment is typically ineffective for PFAS.”     

Why we’re highlighting this study: This study uses publicly available data from both federal and state sources. It details sample locations and the method used to extrapolate the figure showing broad contamination is likely. It also provides a preliminary estimate of contamination from private wells, often difficult to survey.

Related study:

•  Detection of Poly- and Perfluoroalkyl Substances (PFASs) in U.S. Drinking Water Linked to Industrial Sites, Military Fire Training Areas, and Wastewater Treatment Plants
  Xindi C. Hu, et al.Environmental Technology & Science Letters. Aug. 9, 2016.

Low-temperature mineralization of perfluorocarboxylic acids: Forever chemicals’ Achilles’ heel
Brittany Trang, et al. Science, August 2022. 

The study: All PFAS have at least one carbon atom that is fluorinated — a near indestructible structure. In this study, researchers use a new process to “deflourinate” a kind of PFAS, called PFCA      : they mix water and a solvent called dimethyl sulfoxide at relatively low temperatures (80 to 120 degrees centigrade) compared with other methods. That leaves carbon and inorganic fluoride, two far less harmful substances. Under laboratory conditions, the combination then breaks down within 24 hours after adding  sodium hydroxide, also known as caustic soda or lye.

The findings: Scientists found a weakness in the PFAS structure by targeting one end of the molecule in a process that heats PFAS in dimethyl sulfoxide with sodium hydroxide. Sodium hydroxide is what’s known as a reagent — a compound used to start a chemical reaction. The process broke down PFAS molecules quickly into relatively benign substances. The scientists successfully tested the method on 10 kinds of PFAS, including perfluoroalkyl carboxylic acids (PFCAs), perfluoroalkyl ether carboxylic acid (PFECAs), PFOAs and GenX (the trade name of a compound developed by DuPont). 

In the authors’ words: “In contrast to other proposed PFAS degradation strategies, the conditions described here are specific to fluorocarbons, destroy concentrated PFCAs, give high fluoride ion recovery and low fluorinated by-product formation, and operate under relatively mild conditions with inexpensive reagents. The proposed mechanism is consistent with both computational and experimental results, provides insight into the complexity of PFAS mineralization processes, and may be operative but unrecognized in other PFAS degradation approaches.”

Why we’re highlighting this study: This study shows a simple process for breaking down one kind of  PFAS atomic structure. Scientists are now investigating how to use it for large amounts of PFAS chemicals outside the lab. While most methods use filters to remove PFAS, this method, if it can be used widely, breaks them down. The study drew widespread attention and hope that “forever” might not be forever after all.

Related studies: 

• Recent advances in electrochemical decontamination of perfluorinated compounds from water: a review
  Fuqiang Liu, et al Frontiers of Environmental Science & Engineering, February 2023.
• Electrochemical degradation of PFOA and its common alternatives: Assessment of key parameters, roles of active species, and transformation pathway
  Fatemeh Asadi Zeidabad, et al. Chemosphere, February 2023.

Per- and polyfluoroalkyl substances (PFAS) in United States tapwater: Comparison of underserved private-well and public-supply exposures and associated health implications
Kelly Smalling, et al. Environment International, August 2023.

The study: Scientists from the U.S. Geological survey set out to compare human PFAS exposure in tap water from publicly regulated supply and unregulated private well systems, the most comprehensive survey  to date. The researchers note that there’s limited information on PFAS in residential tap water , especially for consumers who get their water from private wells. Many studies look at water sources, like lakes and groundwater, rather than the residential tap. Roughly one in eight U.S. residents get water from private wells. Researchers aggregated sampled tap water results from 716 locations (269 private wells and 447 public supply systems) across the U.S. during 2016 to 2021. They tested for 32 types of PFAS. The samples were assessed by three labs and compared with possible contamination sources, like industrial sites that may contaminate sources of drinking water.

The findings: The researchers estimate at least 45% of tap water in the U.S. contains at least one or more types of PFAS, with figures ranging from one to nine types, with a median of two different PFAS types in. The research also confirms previous studies that found urban areas are more likely to have PFAS in tap water. The authors estimate the probability of not finding PFAS in tap water is about 75% in rural areas versus 25% in urban areas. Drinking water exposure, the scientists note, may be more common in the Great Plains, Great Lakes, Eastern Seaboard and central and southern California.

The authors say next steps may be to:

• Integrate more geospatial datasets and PFAS data to better identify vulnerable regions and populations.
• Expand monitoring to include rural small-and private-well dependent communities.
• Expand analysis methods used by drinking water monitoring programs in the U.S. and globally.

In the author’s words:  The findings support “the continued need for point-of-use tap water monitoring, with an emphasis on unmonitored private-wells and underserved communities on small community water supplies.”

Why we’re highlighting this study: There is limited information on PFAS in tap water on a national level, particularly from private well sources, from which about 45 million people get their water, many in rural areas. The authors note how prevalent PFAS chemicals are likely to be in urban water systems.

Related study:

• Comparative case study of legislative attempts to require private well testing in New Jersey and Maine
  Sara V. Flanagan and Yan Zheng. Environmental Science & Policy, July 2018.

Sociodemographic Factors Are Associated with the Abundance of PFAS Sources and Detection in U.S. Community Water Systems 
Jahred M. Liddie, Laurel A. Schaider and Elsie M. Sunderland.Environmental Science & Technology, May 15, 2023.

The study: In the first study of its kind, researchers from the Harvard T.H. Chan School of Public Health, the Harvard Paulson School of Engineering and Applied Science, and the Silent Spring Institute, a non-profit organization that investigates environmental chemicals, evaluate communities with a higher population of Black and Hispanic/Latino residents and their exposure to PFAS chemicals in their drinking water supplies versus other communities. They examine PFAS concentrations from more than 44,000 water samples from 7,873 community water systems across 18 states collected between January 2016 and August 2022.

The findings: People living in communities with higher proportions of Black and Hispanic/Latino residents are more likely to have tap water contaminated with certain PFAS chemicals than people living in other communities. Roughly one in four people in the states studied were served by water systems with at least one kind of PFAS chemical detected above 5 nanograms per liter..

The authors also find that each possible source of PFAS chemicals inside a watershed  — an airport or a fire training area — could be associated with much higher levels of PFAS in drinking water systems. Water from watersheds with a higher concentration of those sites were also more likely to ultimately wind up in water systems that served Hispanic and Black communities versus those without the potential PFAS sources, the researchers find.

In the author’s words: Community Water Systems’ (CWS) “watersheds with PFAS sources served higher proportions of Hispanic/Latino and non-Hispanic Black residents compared to those without PFAS sources. CWS serving higher proportions of Hispanic/Latino and non-Hispanic Black residents had significantly increased odds of detecting several PFAS. This likely reflects disparities in the siting of PFAS contamination sources. Results of this work suggest that addressing environmental justice concerns should be a component of risk mitigation planning for areas affected by drinking water PFAS contamination.”

Why we’re highlighting this study:  This is the first study directly examining socioeconomic factors, PFAS levels in drinking water and potential sources of the contamination. As a new federal-level rule is rolled out by the EPA, more data may become available to researchers to parse broader and more detailed findings around the social justice aspects of PFAS and drinking water.

Assessing the Effectiveness of Point-of-Use Residential Drinking Water Filters for Perfluoroalkyl Substances (PFASs)
Nicholas J. Herkert, et al. Environmental Science & Technology Letters, March  2020.

The study: Researchers led by scientists at Duke University tested residential water filters used both inside home plumbing systems and in consumer products like water pitchers in two North Carolina regions. Because PFAS chemicals can be difficult to remove from full scale municipal and well water systems, the authors set out to look at how at-home filters performed. They collected 89 samples from 73 homes and screened for 16 different kinds of PFAS.

The findings: Under-the-sink “dual stage” and reverse osmosis filters showed “near complete removal” for the PFAS chemicals the researchers evaluated. In all, researchers looked at 89 water samples; 76 of those samples went through “point of use” or POU filters, on in-home devices, while 13 filtered water via “point of entry” or POE filters, where water enters the home. Other (and less expensive) types of filters didn’t work as well for PFAS chemicals overall. Of the PFAS chemicals tested, those with “long chain” molecules were easier to remove than “short chain” molecules, with up to 70 percent removal and 40 percent removal respectively.

In the authors’ words: “We demonstrated that residential activated carbon POU/POE systems have variable performance. While under-sink reverse osmosis systems appear to be an ideal option for removing PFAS, they have a high capital cost. Ultimately, an activated carbon filter should provide some removal of PFAS from drinking water… and have a lower capital cost.”

Why we included this study: With an increasing number of PFAS related stories in the news, we wanted to provide research on what consumers can do to lessen their exposure, particularly from drinking water.

Related reading:

• The Environmental Working Group tested filters for PFAS chemical removal in July 2023 and published its recommendations. Consumer Reports also offers a guide, compiled in conjunction with a 2021 report with The Guardian. And finally, this Q&A from the EPA answers a plethora of consumer-oriented questions, including those about drinking water filters.

Per‐and Polyfluoroalkyl Substance Toxicity and Human Health Review: Current State of Knowledge and Strategies for Informing Future Research
Suzanne E. Fenton, et al. Environmental Toxicology and Chemistry, March 2021. 

The study review: This overview published in 2021 surveys and assesses current research and what scientists know about PFAS chemicals and their toxicological effects, or what the chemicals and poisons do to a person’s body. The authors want to figure out a way to study more of the thousands of kinds of PFAS together rather than individually. The authors include and examine studies on PFAS chemical exposure that suggest a link to or higher risk of autoimmune disorders including thyroid disease, increased cholesterol levels, diminished vaccine response, low sperm count, liver damage, inflammatory bowel disease, increased risk of miscarriage, obesity and some cancers, among other impacts on human health.

The recommendations: The authors call for a way to better define relationships between a PFAS chemical’s structure and biomarkers, or indications that show a specific change or response in how the human body is supposed to operate. If a method can be found, scientists will learn more about a far larger number of PFAS chemicals than the limited number studied now, common effects and a way to respond to more versions of them in specific parts or areas of the body.

In the authors’ words: “There are only a handful of PFAS with enough health effects data for use in decision‐making, as evidenced by state‐led standard setting,” the authors write. “There are numerous health effects reported for those PFAS tested, which sets this family of chemicals apart from many others and elevates the need for precautionary action. With hundreds of PFAS lacking health effects data, translational research teams using innovative methodologies and carefully designed studies will be critical to our state of knowledge on human health toxicity of per‐and polyfluoroalkyl substances.”

Additional reading:  Scientific Basis for Managing PFAS as a Chemical Class,      
Carol F. Kwiatkowski, et al. Environmental Science & Technology Letters, August, 2020.

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