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

By Marina Schauffler KFF Wellbeing News When Lawrence and Penny Higgins of Fairfield Maine first learned in that high levels of toxic chemicals called PFAS taint their home s well water they wondered how their vitality might suffer They had consumed the water for decades given it to their pets and farm animals and used it to irrigate their vegetable garden and fruit trees Related Articles Judge blocks Trump administration s efforts to defund Planned Parenthood Louisiana upholds its HIV exposure law as other states change or repeal theirs Georgia shows rough road ahead for states as Medicaid work requirements loom A expert sees new hope for Alzheimer s infection patients and families He wants you to know why These tips from experts can help your teenager approach AI companions We demanded to find out just what it s going to do to us Penny Higgins reported They contacted a couple of doctors but we were met with a brick wall Nobody knew anything Worse still she added they really didn t want to hear about it Multiple clinicians remain unaware of the fitness risks linked to PFAS short for perfluoroalkyl and polyfluoroalkyl substances despite rising biological and population awareness of the chemicals and their toxicity 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 s in products including cosmetics cookware clothing carpeting food packaging and firefighting foam Researchers say they permeate water systems and soils nationwide with a federal evaluation estimating that at least of U S tap water is contaminated PFAS can be detected in the blood of nearly all Americans according to the Centers for Ailment Control and Prevention Maine was among the first states to begin extensive water and soil testing and to try to limit further citizens exposure to PFAS through initiative action after discovering that farms and residences like the Higgins property had been contaminated by land-spreading of wastewater sludge containing PFAS Exposure can also be high for people living near military bases fire training areas landfills or manufacturing facilities In regions where testing reveals PFAS hot spots diagnostic providers can be caught flat-footed and patients left adrift Lawrence and Penny Higgins and other Central Maine residents serve on an advisory board for a Maine evaluation assessing mental physical condition consequences of PFAS exposure in rural residents Brianna Soukup KFF Healthcare News TNS Rachel Criswell a family practice practitioner and environmental wellbeing researcher is working to change that She was completing her residency in Central Maine around the time that the Higginses and others there began discovering the extent of the contamination Her health training at Columbia University included more than a year in Norway researching the effects of PFAS and other chemicals on maternal and infant healthcare When patients began asking about PFAS Criswell and the state toxicologist offered primary care providers lunchtime presentations on how to respond Since then she has fielded frequent PFAS questions from doctors and patients throughout the state Even knowledgeable providers can find it challenging to stay current given rapidly evolving scientific information and meager established protocols The work I do is exhausting and time-consuming and sometimes frustrating Criswell revealed but it s exactly what I should be doing Phil Brown a Northeastern University sociology professor and a co-director of the PFAS Project Lab stated the medicinal population doesn t know a lot about occupational and environmental fitness adding that it s a very minimal part of the biological school curriculum and continuing schooling Courtney Carignan an environmental epidemiologist at Michigan State University commented learning of PFAS exposure whether from their drinking water or occupational sources is a sensitive and upsetting situation for people and it s helpful if their doctors can take it seriously Clinical guidance concerning PFAS improved after the National Academies of Sciences Engineering and Medicine distributed a review on PFAS in It revealed strong evidence associating PFAS with kidney cancer high cholesterol reduced birth weights and lower antibody responses to vaccines and specific evidence linking PFAS to breast and testicular cancer ulcerative colitis thyroid and liver dysfunction and pregnancy-induced hypertension That guidance revolutionized my practice Criswell noted 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 already been recommending Doctors should order blood tests for patients with known PFAS exposures Testing for PFAS in blood and for related medicinal conditions if needed can help ease patients anxiety There isn t a day that goes by Lawrence Higgins announced that we don t think and wonder when our bodies are going to shut down on us Devastating but Incredibly Helpful After finding out in that his family was exposed to PFAS through sludge spread on their Unity Maine farm decades earlier Adam Nordell discovered that it was exceedingly formidable to get tested Our family expert had not heard of PFAS and didn t know what the test was he reported A lab technician needed coaching from an outside expert to source the test The lab analyzing the samples had a backlog that left the family waiting three months Before Lawrence Higgins discovered in that their home s artesian well was contaminated with PFAS he built a duck pond to help manage the overflow of water Brianna Soukup KFF Robustness News TNS The results were devastating but incredibly helpful Nordell announced Their blood serum levels for PFAS were at roughly the th percentile nationally far higher than their well-water levels would have predicted indicating that additional exposure was supposedly coming from other sources such as soil contact dust and food Blood levels of PFAS between and nanograms per milliliter may be problematic the national academies stated In highly contaminated settings blood levels can run upward of times the -ng mL exposure threshold Nordell and his family had been planning to remain on the farm and grow crops less affected by PFAS but the test results persuaded them to leave Knowledge is power Nordell reported and having the blood figures gave us agency The national academies guidance paved the way for more clinicians to order PFAS blood tests The cost typically to can be prohibitive if not picked up by insurance and not all insurers cover the testing Deductibles and copays can also limit patients ceiling to get tested Less costly finger-prick tests administered at home appear to capture selected of the more commonly discovered PFAS as accurately as blood serum tests Carignan and colleagues revealed Maine legislators in recent weeks passed with overwhelming backing a bill modeled after one in New Hampshire that would require insurers to consider PFAS blood testing part of preventive care but it was carried over to the next legislative session In my mind it s a no-brainer that the PFAS blood serum test should be universally offered at no cost to the recipient noted Nordell who now works as a campaign manager for the nonprofit Defend Our Fitness Early screening for the diseases associated with PFAS he declared is a humane guidelines that s in the best interests of everyone involved patients providers and insurance companies Criswell tells colleagues in family practice that they can view elevated PFAS blood levels as a vulnerability factor akin to smoking What s challenging as a primary care medical professional is the nitty-gritty of the testing and screening logistics she disclosed Penny and Lawrence Higgins after living at their home in Fairfield Maine for decades discovered in that high levels of PFAS are present in their well water Brianna Soukup KFF Vitality News TNS In trainings she shares a handout summarizing the national academies guidance including associated heath conditions blood testing clinical follow-up and exposure reduction to which she has added details about lab test order codes insurance costs and coverage and water filtration Criswell served on an advisory committee tasked with allocating million in state funds to address PFAS contamination from past sludge-spreading in Maine The group recommended that labs analyzing PFAS blood tests should document the results to state masses strength personnel That change slated to take effect this summer will allow Maine healthcare administrators to follow up with people who have high PFAS blood levels to better determine possible sources and to share information on wellbeing risks and curative screening As with multiple earlier PFAS policies Maine is among the first states to adopt this measure Screening for PFAS is falling short in various places nationwide revealed Kyle Horton an internist in Wilmington North Carolina and founder of the nonprofit On Your Side Vitality She estimates that only about in people facing high PFAS exposure are getting adequate diagnostic guidance Even in her highly contaminated locality I m not aware of anyone who is routinely screening or discussing PFAS mitigation with their patients Horton commented Knowledge of local PFAS threats she added hasn t translated over to folks managing patients differently or trying to get through to that next phase of healthcare monitoring Patients as Advocates In heavily affected communities including in Michigan Maine and Massachusetts patients are pushing the anatomical field to better understand PFAS More doctors are speaking out as well Testifying before a Maine legislative committee this year in aid of a bill that would limit occupational PFAS exposure Criswell noted We as physicians who are sworn to protect the fitness of our patients must pay attention to the underlying causes of the illnesses we treat and stand up for agenda solutions that reduce these causes Even where agenda changes are instituted the physical and psychological toll of forever chemicals will extend far into the future 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 prevention To assess the mental physical condition consequences of PFAS exposure in rural residents Criswell and Abby Fleisch a pediatric endocrinologist at the MaineHealth Institute for Research teamed up on a survey In its first phase winding up this summer they collected blood samples and detailed lifestyle information from people Nordell the Higginses and other Central Maine residents sit on an advisory board for the review a step Criswell disclosed was critical to ensuring that their research helps those majority affected by PFAS The urgency from the society is really needed she mentioned I don t think I would be as fired up if my patients weren t such good advocates Criswell has faced what she calls cognitive dissonance caught between the deliberate pace of peer-reviewed therapeutic research and the immediate requirements of patients eager 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 the clinical trial process could take years Criswell and Fleisch are instead planning to produce a event series on PFAS blood-level changes in patients taking cholestyramine We can validate the research results and share those Criswell reported potentially helping other patients A view of Skowhegan Maine on June Brianna Soukup KFF Wellbeing News TNS Alan Ducatman an internist and occupational physician who helped design the largest PFAS cohort survey to date explained providers should convey that there is no risk-benefit analysis for any of the current treatments although they re generally well known and low-risk Several people want to be treated and they should be allowed to be treated he reported because knowing they have high PFAS levels in their bodies preys on them KFF Vitality News Distributed by Tribune Content Agency LLC