N.H. advocate says new PFAS clinical care recommendations in a national report are ‘huge milestones’
A new report from the National Academy of Sciences provides new recommendations for how doctors should treat patients who have been exposed to PFAS, a group of man-made chemicals that were widely used in consumer products like non-stick cookware and fabric that can resist stains.
PFAS contamination has affected communities across New Hampshire, with hotspots of pollution in the Merrimack area, from the Saint-Gobain manufacturing facility, and on the Seacoast, from the former Pease Air Force base.
The report lays out the health effects associated with PFAS exposure, provides guidance for clinicians about how to understand risk levels associated with blood testing results and how to treat patients testing at higher levels, and recommends blood testing for people with an extended history of higher exposure.
That’s a major milestone for many advocates for PFAS-impacted communities, who have long advocated for more accessible testing, said Andrea Amico, who reviewed a draft copy of the report before it was published.
Amico co-founded the organization Testing for Pease to advocate for her family and others affected by PFAS contamination from firefighting foam used at Pease.
“That's where Testing for Pease came from,” Amico said. “We wanted blood testing for our community, and it took a lot of advocacy to have that happen.”
Barriers to blood testing
Amico said the group had to organize testing efforts through the state health department, because blood testing for individuals wasn’t easily accessible. It was complicated for physicians to order tests, and there were only a few labs in the country that would run those tests.
National guidelines haven’t historically recommended testing for all patients with extended histories of high exposure. A 2019 clinical guidance sheet from the Agency for Toxic Substances and Disease Registry encourages doctors to tell their patients that blood tests will not provide information to predict health problems or information for treatment, and that PFAS testing is most helpful when part of a research study.
In a community meeting after contamination at Pease was discovered, state officials’ advice echoed that document. Amico said the officials recommended against blood testing, saying it wouldn’t provide information about where the PFAS in a person’s blood came from, or whether it would trigger a health effect.
Eventually, she said, the state agreed to offer a blood testing program. But it took work to convince them it was worthwhile, and to find labs that could handle the testing.
More than 2,800 places across the U.S. have documented PFAS contamination, and the National Academy of Sciences report says many community members who attended town halls run by the committee that wrote the report were strongly in favor of PFAS testing, and have experienced frustration trying to access it in the past.
Recommendations for clinicians
The report was commissioned by the Agency for Toxic Substances and Disease Control (ATSDR) and the National Institute of Environmental Health Sciences. It recommends changing ATSDR’s guidance to include offering testing for those with extended high exposure and monitoring patients who test at high levels for the health issues.
There is evidence that PFAS exposure is linked to kidney cancer, decreased antibody response, high cholesterol, and decreased growth in infants and fetuses, the report says. Patients testing between 2 and 20 nanograms per liter for PFAS in blood could face the potential for adverse effects, and patients testing above 20 nanograms per liter may face higher risk.
The medical monitoring guidelines and clear screening levels included in the report were another priority that affected communities have advocated for, Amico said.
“That puts the blood test results in more context. That helps patients and physicians kind of identify what category their patients are in, and it just helps them make more informed decisions about monitoring health over time,” she said.
In Amico’s experience, physicians haven’t had the knowledge or tools to treat those with PFAS exposure. Most haven’t heard of PFAS, or the health effects associated with exposure, she said. She doesn’t fault them, acknowledging that many doctors don’t get much environmental health training, but says it’s important that more thorough guidance is coming.
“From the moment I found out my family was exposed to PFAS, the first questions that came to my mind were: Has their health been affected by this? And how will their health be affected by this over time?” Amico said. “I’m not saying that this report or these recommendations will answer all of those questions…but they’re huge milestones in the right direction.”
Access remains a challenge
In New Hampshire, insurance providers are required to cover PFAS blood testing. But that’s not the case in every state, and many people don’t have insurance or relationships with clinical care providers who could order blood tests.
The report says in the current healthcare landscape, access to PFAS testing could remain an issue – it’s expensive, and demographic factors like age and race have influenced whether people are able to access clinical services.
“Encouraging testing primarily among people with relatively stable access to care could have the unintended effect of aggravating disparities in exposure to PFAS, a severe disadvantage of encouraging testing without a funded, national PFAS testing program,” the report says.
Authors say the recommendations would be most effective if they were part of a larger national effort to increase monitoring of PFAS and spur education about environmental health. One of their recommendations is for labs to share results of PFAS testing with state public health officers, to improve knowledge about exposure.
Almost 100% of people in the United States have been exposed to at least one PFAS chemical, but levels of exposure aren’t consistently documented, the report says.
“The recommendations open up bigger questions and bigger challenges,” Amico said. “Now, breaking down the barriers to access what these recommendations are saying is the next challenge, and making sure the solutions we come up with are inclusive of everybody, regardless of their ability to pay or their insurance status.”