The first step is measuring the problem

Arming doctors with knowledge about PFAS pollution

By Courtney Carignan, Esmé Getto, Phil Brown, Laurel Schaider, Andrea Amico, Emily Donovan and Alissa Cordner for the Environmental Health News

When communities impacted by PFAS contamination seek medical advice, they often discover doctors are unfamiliar with these chemicals health effects and unsure how to address their patients’ concerns.

A report released in July and new courses for medical professionals aim to change that. The National Academies of Sciences, Engineering and Medicine report recommends offering per- and polyfluoroalkyl substances, commonly known as PFAS, blood testing to individuals likely to have had elevated exposure and prioritizes certain types of medical screening for affected individuals. In addition, in October 2022, our team launched a free Continuing Medical Education course, initiated by and including perspectives from community activists, along with a Clinician Resources webpage on the PFAS Exchange.

These recommendations and resources are urgent: PFAS—used to impart stain, water, grease and heat-resistance to many common consumer products—are persistent in the environment and our bodies and have likely impacted the drinking water of more than 200 million Americans. PFAS have been linked to far-ranging health effects, including high cholesterol, immune suppression, thyroid disease and cancer.

Our aim to increase the medical community’s knowledge and resources in addressing PFAS is gaining traction. These efforts are part of a growing recognition of the need for more health professional education and guidance on health implications of PFAS exposure, obtaining and interpreting PFAS blood testing and improving patient care.

PFAS testing can save lives 

The importance of clinician education regarding PFAS is demonstrated in the lives of those affected by these chemicals. Michigan resident Sandy Wynn-Stelt learned in 2017 that she and her late husband Joel had consumed highly contaminated water for over a decade prior to his fatal liver cancer diagnosis. Her quest for answers led her to get tests — both her blood and her private well had extremely high levels. 

She shared her test results with her doctor along with information about PFAS health effects. This information likely saved her life: Wynn-Stelt’s physician monitored her health and was able to make an early diagnosis of thyroid cancer based on the results of her PFAS blood test and other information.

Related: Where did the PFAS in your blood come from? These computer models offer clues

Similarly, Ayesha Khan became concerned about PFAS after her firefighter husband Nate Barber was diagnosed with testicular cancer in 2019 and she learned that PFAS exposure is a risk factor for the condition. PFAS contamination was discovered in groundwater near the Nantucket Airport close to their home around that time and she was additionally concerned to learn that firefighters are exposed to PFAS from firefighting foam, as well as their protective gear. 

In 2020, she and her close friend Jaime Honkawa founded the Nantucket PFAS Action Group, a community organization that educates firefighters and the public about the risks of PFAS — and helps them take protective action.

Our new course was prompted by a request from the Nantucket Cottage Hospital to the Nantucket PFAS Action Group to develop training for their medical professionals about PFAS exposure. The Nantucket PFAS Action Group worked with the PFAS-REACH collaborative team and the Mid-America Pediatric Environmental Health Specialty Unit to develop the course.

Released this October through Children’s Mercy Hospital, the course features both scientific experts as well as people who’ve experienced contamination. It was designed to be useful to all health professionals, and especially those in PFAS-impacted areas or whose patients have been occupationally or otherwise exposed. It can be accessed via the Children’s Mercy Hospital website or on the Clinician Resources page of the PFAS Exchange website.

Testing individuals for PFAS

In the past, the federal Agency for Toxic Substances and Disease Registry and other health agencies have emphasized the benefits of testing at the population, rather than individual, level. So the National Academies of Sciences, Engineering and Medicine report’s recommendation to offer PFAS blood testing to individuals who have likely experienced elevated exposures is noteworthy. 

The report highlighted the importance of patient autonomy with informed, shared decision making between clinicians and patients about PFAS blood testing and medical screening with discussion of its benefits, harms and limitations. It noted how testing can help people feel empowered in managing their own health and can relieve the stress of not knowing one’s exposure.

For patients with moderately elevated PFAS blood levels, the report recommends that clinicians focus on screening for high blood pressure, pregnancy induced hypertension and breast cancer based on age and other risk factors. 

For patients with higher total PFAS in their blood, the report additionally recommends that clinicians test for thyroid function and assess for signs of ulcerative colitis as well as kidney and testicular cancer.

The recommendations have been well received by those impacted by PFAS contamination. Andrea Amico of Testing for Pease in New Hampshire called the report’s recommendations “huge milestones in the right direction,” and Emily Donovan of the community action group Clean Cape Fear in North Carolina wrote that the new report is “an important first step for our community” and that it “allows us to begin the process of caring for the elevated disease burdens our region is experiencing.” 

Amico, Donovan and many others from PFAS-impacted communities across the country provided valuable input for the report. 

Taking action on PFAS pollution

PFAS science and activism have expanded enormously in less than a decade and engagement of medical professionals has not kept pace. Now, the combination of the National Academies of Sciences, Engineering, and Medicine report and our Continuing Medical Education course opens up new avenues to address health effects and should spur health professionals to join in work to halt the upstream production and emissions of PFAS.

If you are a resident of a PFAS-impacted community, you can share our Resources for Clinicians page with your medical providers and explore our PFAS Exchange website. If you are a medical professional, please consider enrolling in our course and sharing the information with your network of medical and public health organizations.

Together, we can empower PFAS-affected people and help tackle this insidious pollution.

For more information:

Download the National Academies of Sciences, Engineering and Medicine report

Access our free Continuing Medical Education (CME) Training at the Children’s Mercy Hospital Continuing Medical Education page.

Check out our Resources for Clinicians, which includes video of the training, a link to feedback survey, and medical screening guidance

PFAS-REACH (Research, Education, and Action for Community Health) is a collaboration among Silent Spring Institute, Northeastern University, Michigan State University, Testing for Pease, Massachusetts Breast Cancer Coalition, and Slingshot. We acknowledge the work of Elizabeth Friedman, MD and Alan Ducatman, MD who are responsible for the medical content of the CME course.