Amid PFAS fallout, a Maine doctor navigates medical risks with her patients

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Published by KFF Health News’ Marina Schauffler

Lawrence and Penny Higgins of Fairfield, Maine, were concerned about the potential health effects when they discovered in 2020 that their home’s well water contained high concentrations of harmful chemicals known as PFAS. For decades, they had drank the water, fed it to their farm animals and pets, and irrigated their fruit trees and vegetable garden.

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Penny Higgins stated, “We wanted to know exactly what it’s going to do to us.” After reaching out to a few physicians, we encountered a brick wall. No one was aware of anything.

They truly didn’t want to hear about it, she said, which was even worse.

Despite growing medical and public knowledge of the chemicals and their toxicity, many professionals are still ignorant of the health hazards associated with PFAS, short for perfluoroalkyl and polyfluoroalkyl compounds. PFAS increase the risk of cancer, immunological deficits, and pregnancy difficulties. They can also impact almost every organ system and remain in the body for decades.

Since the 1950s, these everlasting compounds have been extensively utilized in a variety of items, including as firefighting foam, cookware, textiles, carpeting, cosmetics, and food packaging. According to researchers, they are present in soils and water systems across the country; a federal study estimated that at least 45% of tap water in the United States is contaminated. According to the Centers for Disease Control and Prevention, almost all Americans have PFAS in their blood.

After learning that farms and homes like the Higgins property had been damaged by the land-spreading of wastewater sludge containing PFAS, Maine was one of the first states to start doing extensive water and soil testing and to attempt to restrict additional public exposure to PFAS by policy action. Those who live close to military installations, fire training grounds, landfills, or manufacturing plants may also be at high risk.

Medical professionals may be taken off guard and patients may be left stranded in areas where testing identifies PFAS hot zones.

Environmental health researcher and family practice physician Rachel Criswell is trying to change that. Around the time the Higginses and others in Central Maine started to realize the depth of the poisoning, she was finishing her residency there. She spent more than a year studying the impact of PFAS and other chemicals on the health of mothers and infants in Norway as part of her medical education at Columbia University.

Criswell and the state toxicologist gave lunchtime talks to primary care clinicians on how to respond to patients’ inquiries regarding PFAS. Since then, she has been asked about PFAS by patients and physicians all around the state.

With few set guidelines and frequently changing scientific information, it can be difficult for even educated clinicians to stay up to date. According to Criswell, the work I perform is time-consuming, draining, and even irritating, but it’s precisely what I should be doing.

The medical community doesn’t know much about occupational and environmental health, according to Phil Brown, a professor of sociology at Northeastern University and co-director of the PFAS Project Lab. He also noted that occupational and environmental health make up a very small portion of the curriculum in traditional schools and continuing education.

Learning of PFAS exposure, whether from drinking water or occupational sources, is a delicate and distressing scenario for patients, and it’s beneficial if their doctors can take it seriously, according to Courtney Carignan, an environmental epidemiologist at Michigan State University.

The National Academies of Sciences, Engineering, and Medicine published a report on PFAS in 2022, which led to an improvement in clinical guidelines about PFAS. It discovered some evidence connecting PFAS to breast and testicular cancer, ulcerative colitis, thyroid and liver dysfunction, and pregnancy-induced hypertension, as well as substantial evidence relating PFAS to kidney cancer, high cholesterol, lower birth weights, and decreased antibody responses to immunizations.

According to Criswell, that advice completely changed the way I practice. It gave PFAS exposure a level of concreteness that was perhaps lacking previously, rather than being this vague term where we are unsure of how to apply the study.

Criswell’s recommendation that doctors perform blood tests for individuals with documented PFAS exposures was confirmed by the national academies.

Patients’ anxiety can be reduced by testing for PFAS in their blood as well as any associated medical issues, if necessary.

According to Lawrence Higgins, there isn’t a day that passes that we don’t consider and question when our bodies will fail us.

Adam Nordell found it extremely difficult to be tested after learning in 2021 that his family had been exposed to PFAS from sludge spilled on their farm in Unity, Maine, decades earlier. According to our family doctor, he was unaware of the test and had never heard of PFAS. To source the test, a lab worker required guidance from an outside specialist. The family had to wait three months because of a backlog in the lab that was testing the samples.

According to Nordell, the outcomes were catastrophic but also quite beneficial. Their PFAS blood serum levels were far higher than what would have been expected from their well water, at about the 99th percentile nationwide, suggesting that additional exposure was most likely coming from other sources such dust, food, and soil contact.

According to the national academies, blood levels of PFAS ranging from 2 to 20 nanograms per milliliter could be harmful. Blood levels can reach 150 times the 20 ng/mL risk threshold in severely polluted environments.

The test results convinced Nordell and his family to leave the farm, even though they had intended to stay and produce crops that were less impacted by PFAS. According to Nordell, “knowledge is power,” and possessing the blood data gave us agency.

More doctors are now ordering PFAS blood testing thanks to the national academies’ guidelines. Not all insurers cover the testing, and the cost, which is usually between $400 and $600, might be exorbitant if not covered by insurance. Copays and deductibles may also prevent some people from getting examined. According to Carignan and colleagues, less expensive finger-prick tests that are performed at home seem to be just as accurate in detecting some of the more prevalent PFAS as blood serum tests.

A bill modeled after one in New Hampshire that would require insurers to include PFAS blood testing as part of preventative care was recently passed by Maine lawmakers with resounding support; however, it was carried over to the following parliamentary session.

“I think it’s obvious that the PFAS blood serum test should be provided to all patients at no cost,” Nordell, who is currently a campaign manager for the nonprofit organization Defend Our Health, said. He claimed that early screening for the illnesses linked to PFAS is a compassionate practice that benefits patients, healthcare professionals, and insurance companies alike.

According to Criswell, family practice colleagues may consider high blood levels of PFAS to be a risk factor, similar to smoking. The specifics of testing and screening logistics are difficult for primary care physicians, she noted.

She has included information regarding lab test order codes, insurance prices and coverage, and water filtration to a document she provides during trainings that summarizes the national academies’ guidance on related health issues, blood testing, clinical follow-up, and exposure reduction.

Criswell was a member of an advisory council that was charged with distributing $60 million in state funding to remedy PFAS pollution in Maine caused by previous sludge spills. The group suggested that state public health officials be notified of the results from labs that analyze blood testing for PFAS.

This move, which is scheduled to go into effect this summer, would enable Maine health officials to provide information about health concerns and medical screening and to follow up with individuals who have elevated blood levels of PFAS in order to better identify possible sources. Maine is one of the first states to implement this policy, as was the case with many previous PFAS initiatives.

According to Kyle Horton, an internist in Wilmington, North Carolina, and the founder of the charity organization On Your Side Health, PFAS screening is inadequate in many locations across the country. According to her, just roughly one out of every 100 individuals exposed to high levels of PFAS are receiving proper medical advice.

“I’m not aware of anyone who is routinely screening or discussing PFAS mitigation with their patients, even in her highly contaminated community,” Horton stated. “Knowledge of local PFAS threats hasn’t translated into people trying to get through to that next phase of medical monitoring or managing patients differently,” she added.

Patients in severely impacted areas, such as Massachusetts, Maine, and Michigan, are pressuring the medical community to have a deeper understanding of PFAS.

More medical professionals are also speaking out. We, as doctors, who are sworn to protect the health of our patients, must pay attention to the underlying causes of the illnesses we treat and advocate for policy solutions that reduce these causes, Criswell stated in testimony before a Maine legislative committee this year in support of a bill that would limit occupational PFAS exposure.

The physical and psychological effects of everlasting chemicals will last for a very long time, even in cases where policy adjustments are implemented. Chronic stress has been noted by Criswell and other medical professionals in Maine.

The former farmer, Nordell, called the contamination of his family “deeply, deeply jarring,” an experience that has occasionally caused him to lose his feeling of security.

Criswell and Abby Fleisch, a pediatric endocrinologist at the MaineHealth Institute for Research, collaborated on a study to evaluate the mental health effects of PFAS exposure in rural communities. In its initial stage, which concluded this summer, they gathered blood samples and comprehensive lifestyle data from 147 individuals.

In order to make sure that their research benefits individuals who are most impacted by PFAS, Nordell, the Higginses, and other Central Maine residents serve on an advisory board for the study, according to Criswell.

She stated that the community’s urgency is truly needed. If my patients weren’t such strong advocates, I doubt I would be as motivated.

Criswell has experienced what she refers to as cognitive dissonance, where she is torn between the urgent requirements of patients who are keen to reduce their PFASbody burden and the methodical speed of peer-reviewed medical research. She first thought about asking residents to take part in a scientific trial to test safe treatments that could lower the body’s levels of PFAS, like high-fiber diets and cholestyramine, a medication that lowers cholesterol. However, it could take years to complete a clinical trial.

Instead, Criswell and Fleisch intend to create a case series on PFAS blood-level alterations in cholestyramine-using patients. According to Criswell, we can verify the study findings and disseminate them, which can benefit more patients.

Although the current treatments are typically well-known and low-risk, Alan Ducatman, an occupational physician and internist who assisted in designing the largest PFAS cohort study to date, advised clinicians to communicate that there is no risk-benefit analysis for any of them.

According to him, some people seek treatment and should be given it since they are preyed upon by the knowledge that they have high amounts of PFAS in their bodies.

KFF Health News, 2025. Tribune Content Agency, LLC is the distributor.

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