Amid PFAS fallout, Maine residents navigate medical risks

When Lawrence and Penny Higgins of Fairfield, Maine, learned in 2020 that high levels of toxic chemicals called PFAS tainted their home’s well water, they wondered how their health might suffer. They’d been drinking the water for decades, giving it to their pets and farm animals, and using it to irrigate their vegetable garden and fruit trees.

“We wanted to find out just what it’s going to do to us,” Penny Higgins said. They contacted a couple of doctors, but “we were met with a brick wall. Nobody knew anything.”

PFAS can affect nearly every organ system and linger in bodies for decades, raising risks of cancer, immune deficiencies, and pregnancy complications.

These “forever chemicals” have been widely used since the 1950s in products including cosmetics, cookware, clothing, carpeting, food packaging, and firefighting foam. Researchers say they permeate water systems and soils nationwide, with a federal study estimating that almost half of U.S. tap water is contaminated. PFAS can be detected in the blood of nearly all Americans, according to the Centers for Disease Control and Prevention.

Maine was among the first states to begin extensive water and soil testing and to try to limit further public exposure to PFAS through policy action, after discovering that farms and residences — like the Higgins property — had been contaminated by land-spreading of wastewater sludge. Exposure can also be high for people living near military bases, fire training areas, landfills, or manufacturing facilities.

But in many PFAS hot spots, medical providers can be caught flat-footed and patients left adrift.

Rachel Criswell, a family practice doctor and environmental health researcher, is working to change that. She was completing her residency in central Maine around the time that the Higginses and others began discovering the extent of the contamination. Her medical training at Columbia University included more than a year in Norway researching the effects of PFAS and other chemicals on maternal and infant health.

When patients began asking about PFAS, Criswell and the state toxicologist offered primary care providers lunchtime presentations on how to respond.

Even knowledgeable providers can find it challenging to stay current given rapidly evolving scientific information and few established protocols.

Occupational and environmental health “is a very minimal part of the medical school curriculum,” said Phil Brown, co-director of the PFAS Project Lab at Northeastern University.

Clinical guidance concerning PFAS improved after the National Academies of Sciences, Engineering, and Medicine released a report on PFAS in 2022. It found strong evidence associating PFAS with kidney cancer, high cholesterol, reduced birth weights, and lower antibody responses to vaccines, and some evidence linking PFAS to breast and testicular cancer, ulcerative colitis, thyroid and liver dysfunction, and pregnancy-induced hypertension.

That guidance “revolutionized my practice,” Criswell said. “Instead of being this hand-wavey thing where we don’t know how to apply the research, it brought a degree of concreteness to PFAS exposure that was kind of missing before.”

The National Academies affirmed what Criswell had been recommending: Doctors should order blood tests for patients with known PFAS exposures.

Testing can help ease patients’ anxiety.

“There isn’t a day that goes by,” Lawrence Higgins said, “that we don’t think and wonder when our bodies are going to shut down on us.”

After finding out in 2021 that his family was exposed to PFAS through sludge spread decades earlier on their Unity, Maine, farm, Adam Nordell discovered that “it was exceedingly difficult” to get tested.

“Our family doctor had not heard of PFAS and didn’t know what the test was,” he said. A lab technician needed coaching to source the test. The lab analyzing the samples had a backlog that left the family waiting three months.

“The results were devastating but incredibly helpful,” Nordell said. Their blood serum levels for PFAS were at roughly the 99th percentile nationally, far higher than their well-water levels would have predicted — indicating that additional exposure was probably coming from sources such as soil contact, dust, and food.

Blood levels of PFAS between 2 and 20 nanograms per milliliter may be problematic, the National Academies reported. In highly contaminated settings, blood levels can run upward of 150 times the 20-ng/mL risk threshold.

Nordell and his family had planned to remain on the farm and grow crops less affected by PFAS, but the results persuaded them to leave.

“Knowledge is power,” Nordell said, and having the data “gave us agency.”

The guidance paved the way for more clinicians to order PFAS blood tests. Not all insurers cover the cost, typically $400 to $600. Less costly finger-prick tests, administered at home, appear to capture some of the more commonly found PFAS as accurately as blood serum tests, researchers found.

Maine legislators recently passed, with overwhelming support, a bill — modeled after one in New Hampshire — that would require insurers to consider PFAS blood testing part of preventive care.

Nordell, who now works as a campaign manager for the nonprofit Defend Our Health, said covering screening for the diseases associated with PFAS is “a humane policy that’s in the best interests of everyone involved” — patients, providers and insurance companies.

Criswell tells colleagues to consider elevated PFAS levels as a risk factor akin to smoking. In trainings, she shares details about heath conditions, blood testing, and clinical follow-up — as well as lab test order codes, insurance costs and coverage, and water filtration.

Screening for PFAS is falling short in many places nationwide, said Kyle Horton, an internist in Wilmington, N.C., and founder of the nonprofit On Your Side Health. She estimates that only about 1 in 100 people facing high PFAS exposure are receiving adequate medical guidance.

Even in her highly contaminated community, Horton said, “I’m not aware of anyone who is routinely screening or discussing PFAS mitigation with their patients.”

Criswell and other Maine doctors have observed chronic stress among patients.

Nordell, the former farmer, described his family’s contamination as “deeply, deeply jarring,” an ordeal that has at times left him “unmoored from a sense of security.”

To assess the mental health consequences of PFAS exposure, Criswell and Abby Fleisch, a pediatric endocrinologist at the MaineHealth Institute for Research, launched a study. In its first phase, researchers collected blood samples and detailed lifestyle information from 147 people.

Nordell, the Higginses, and other residents sit on a study advisory board, which Criswell called critical to ensuring that the research helps those most affected by PFAS.

“The urgency from the community is really needed,” she said. “I don’t think I would be as fired up if my patients weren’t such good advocates.”

Criswell has felt caught between the deliberate pace of peer-reviewed medical research and patients’ immediate needs to lower their PFAS body burden. Initially, she considered inviting residents to participate in a clinical trial to test therapies that are considered safe and may help reduce PFAS levels in the body, such as high-fiber diets, and a drug designed to reduce cholesterol called cholestyramine. But it would take years.

Criswell and Fleisch instead plan to produce a case series on PFAS blood-level changes in patients taking cholestyramine. “We can validate the research results and share those,” potentially helping other patients, Criswell said.

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