Summary of the Committee’s Town Halls
As noted in Chapter 1, the committee engaged with community members throughout the study process. A key component of the community engagement was the conduct of three town halls, held on April 7, May 6, and May 25, 2021. The town halls were conducted remotely, because of the COVID pandemic, and designated Eastern, Middle, and Western. In total, they featured 36 people affected by PFAS.1
This appendix summarizes the discussions at the town halls. It was prepared by Anna Ruth Robuck, Ph.D., as a factual summary of what occurred. The statements made are those of the rapporteur or individual meeting participants and do not necessarily represent the views of all town hall participants, the study committee, or the National Academies of Sciences, Engineering, and Medicine.
The town halls included presentations by invited community representatives detailing information about exposures, health effects, and health care needs; discussion sessions enabled exchange between committee members and participants. The presenters described frustrating and harrowing ordeals navigating PFAS exposure and related health issues and concerns. Several key themes were echoed by multiple presenters and in discussion sessions, including:
- an immediate need for accessible PFAS blood testing,
- continued assessment of PFAS health effects,
- the need for equitable action that best supports the people who are most vulnerable and disproportionately affected, and
- a continuing need for comprehensive exposure assessments.
Accessible Testing Multiple speakers highlighted the importance of readily available, affordable PFAS blood testing. Such testing would serve to establish baselines of exposure, provide agency to exposed communities and families, show respect for community concerns, and inform precautionary health care. They stressed that testing must be financially accessible and recognized by insurance coverage. Many recounted reluctance or refusal by health care providers to order such testing because of the inability to definitively relate blood concentrations to health effects. While acknowledging pervasive exposure to PFAS in the U.S. population, speakers suggested that exposed communities and vulnerable populations should be prioritized for PFAS blood testing, using equity as a guide to design testing protocols.
Continued Assessment of Health Effects Many speakers highlighted the lack of studies detailing health outcomes related to PFAS exposures, citing this as a glaring and troubling data gap, given the long list of health concerns and trends identified by and in exposed communities. Presenters pointed out that the lack of identified health effects often gets cited as a reason not to perform research or desired testing, leading to a circular situation in which health effects are not identified because of a lack of study, and studies are not conducted because of a lack of identified health effects.
1 PFAS are chemicals known as perfluoroalkyl and polyfluoroalkyl substances; see Chapter 1.
Equitable Action Numerous presenters acknowledged the importance of considering systemic inequities when designing health care interventions or protocols related to PFAS exposure. They noted that minority communities often bear disproportionate burdens of exposure, magnified by inequitable sociocultural and economic frameworks. Health care workers seeking to mitigate and address PFAS exposure must consider such compounding effects of inequity, relying on community participation and input to guide intervention. Some speakers pointed out that children, pregnant women, transient populations (such as service members and migrant workers), and people without health insurance or lacking accessible health care need to be considered given the demonstrated burden of PFAS on these populations. Moreover, information about PFAS and appropriate health care options must be framed and presented in culturally appropriate ways across the continuum of both formal and informal health care settings.
Comprehensive Exposure Assessment Throughout the town halls, speakers provided background information about PFAS exposure scenarios in their community or region. These descriptions revealed vast uncertainty about the scope and scale of exposure. Speakers suggested that exposure vectors beyond drinking water should be explored, including air, cooking and washwater, fish and seafood, wildlife products, garden vegetables, and other foods and agricultural products. Speakers also stated that a larger number of PFAS should be included in monitoring efforts considering the ever-expanding number of compounds included in the PFAS class.
EASTERN TOWN HALL
Laurene Allen (Merrimack Citizens for Clean Water)
Laurene Allen shared perspectives from the extensively exposed community of Merrimack, New Hampshire. Residents of this area learned about their exposure to PFAS, in 2016, related to local industrial activities. PFAS have since been found regionally in air, soil, groundwater, and drinking water across an area of more than 65 miles containing five towns. The community is therefore aware of their past exposure and frustratingly continues to grapple with current exposure from ongoing PTFE2 used in fabric and film coating by a local manufacturing facility. Allen stated the community finds the continuing exposure to unregulated PFAS troubling, particularly in the absence of appropriate health care that considers both the history and current extent of PFAS exposure.
Allen described the inaccessibility of blood testing for PFAS and health screenings for PFAS-related ailments, with feedback from physicians that such information is expensive to obtain and may be unhelpful or difficult to frame. However, Allen asserted that such testing is important and validating to the community, and a key “piece of the puzzle” to establish baseline information about the evolving understanding of the nature of exposure. Allen also stated that the community sees patterns of disease and illness related to source proximity that are not currently acknowledged or understood by health care practitioners. Given the documented link between PFAS and specific health effects, including immune function and endocrine health, blood testing is vital for matched, relevant health care based on exposure history.
Allen noted a link between COVID-19 cases and PFAS exposure in New Hampshire, with the further suggestion that information about patient and community PFAS exposure should be incorporated into COVID-19 responses, vaccination protocols, and other public health considerations. Allen also underscored the importance of integrating environmental health and exposure history into health records to increase the capacity to monitor for PFAS-related health effects over time. Allen concluded by emphasizing the importance of improved guidance and support for physicians as to how to best incorporate PFAS exposure into clinical care and patient risk reduction to ensure support for highly exposed communities desperate for appropriate care.
“It’s been really difficult to get chronic PFAS exposure and risks posed from this chemical class acknowledged by health care providers.” Laurene Allen
Teresa Gerade (Don’t Undermine Memphremagog’s Purity)
Teresa Gerade provided information about landfills as sources of PFAS contamination and her Vermont community’s concern about an adjacent landfill. PFAS-enriched landfill leachate is often treated by nearby wastewater treatment plants. Wastewater treatment plants are typically not designed to remove PFAS, resulting in the generation of effluent and biosolids enriched in PFAS. PFAS are then reintroduced to the water cycle through effluent discharge or may enter plants grown in soils amended with sludge-derived biosolids.
Gerade focused on information about Vermont’s landfill neighboring Lake Memphremagog, a lake spanning the border of the United States and Canada. The community surrounding Lake Memphremagog is particularly concerned about the local and regional PFAS exposure associated with the Vermont landfill and how it affects the health of both the lake and the community. Malignant melanoma has been found in a certain species of lake fish, raising questions about the health of fish populations. The surrounding community has related concerns about the safety of eating freshwater fish from the lake and crops grown in biosolid-amended soils. Gerade suggested the need for PFAS screening levels in human blood, like those in place for cholesterol or glucose, to allow for exposure monitoring over time and related risk mitigation.
Ayesha Khan (Nantucket PFAS Action Group)
Ayesha Khan provided insight about the experiences of the firefighting community and specifically the firefighting and AFFF-exposed3 community on Nantucket, Massachusetts. Firefighters are routinely exposed to PFAS through both their gear and firefighting foams. Although the Centers for Disease Control and Prevention (CDC) recommends limiting exposure to PFAS, many firefighters are unaware of PFAS or their unique occupational exposure to the pollutants. As a result, firefighters often receive little or no training to mitigate the risk related to gear handling and foam use. This unawareness has led to previous practices that caused undue PFAS exposure, such as using AFFF to clean vehicles or allowing children to play in AFFF.
Khan emphasized the importance of medical monitoring and PFAS bloodwork for firefighters and other PFAS-exposed communities. Khan asserted that such access would establish exposure baselines, raise awareness, and empower people who are exposed to be proactive in reducing exposure and managing risk. Khan illustrated the limited and frustrating accessibility of bloodwork by recounting an experience with a physician, one who is aware of the PFAS crisis and lectures on PFAS exposures. During care for a child, the patient’s parent requested PFAS bloodwork. The physician responded by trying to dissuade the parent from seeking the testing, saying if PFAS measurements in blood were carried out it would be difficult to frame the information, especially since the child was currently healthy. Khan also recounted that the doctor misquoted data from studies by the Agency for Toxic Substances and Disease Registry (ATSDR) that measured PFAS in residents of exposed communities throughout the United States, stating these studies “did not find much.”
The physician went so far as to jokingly cite a study that found higher reading ability in children whose mothers were prenatally exposed to PFAS. Khan stated the doctor’s response felt as though they were vastly minimizing exposure concerns to the detriment of informed health care for the patient and parent. Khan went on to assert the importance of improving CDC guidance about PFAS provided to clinicians, as the current guidance recommends limiting exposure with little or no information about how to do so in practice. Khan stated that the vagueness of the current guidance can result in situations in which clinicians become barriers to information or action, thereby imposing a burden on concerned
3 AFFF are aqueous film-forming foams, used in firefighting, that often contain PFAS.
patients to figure out how to reduce exposure and advocate for themselves in a health care setting. Khan reiterated the importance of providing candid information about PFAS to exposed communities, as well as to health care providers, lawmakers, union leaders, and other decision makers in order to help exposed communities and families rectify their burden of contamination.
“We are not scientists or doctors. We assume our government is keeping us safe, and when there is a possible link to adverse health risks, we are led to believe that issue is promptly resolved and not with a regrettable substitution.”
“My hope is that [the committee] will educate physicians to be honest with those of us who have been exposed.” Ayesha Khan
Kristen Mello (Westfield Residents Advocating for Themselves [WRAFT])
Kristen Mello offered perspectives from a PFAS-impacted community as a representative of Westfield, Massachusetts. Mello provided context about her experience with PFAS exposure by explaining she learned about her community’s AFFF-contaminated drinking water in 2016 and founded WRAFT in response. An ATSDR study of 459 Westfield residents subsequently found that 92 percent of the city’s residents had serum concentrations of at least one PFAS that exceeded the national average.
In considering the committee’s task regarding challenges related to PFAS encountered in health care settings, Mello cited the frustrating lack of clinical guidance for health care providers as a major challenge. She noted that the current paucity of clinical guidance contrasts sharply with the availability of scientific information describing exposure assessment of specific human populations, animal studies, and toxicological models, and the rigorous collation of such scientific information provided by the ATSDR toxicological profile for PFAS.
Mello strongly stressed the need to collect data about PFAS exposure and associated health effects in exposed communities, citing the inherent disrespect of the plight of exposed communities when testing efforts are denied or discouraged. Without paired assessment of PFAS exposure and associated health outcomes, Mello suggested, the true scope of adverse health effects associated with specific PFAS thresholds cannot be identified, further limiting the advancement of clinical guidance for health care practitioners.
Mello highlighted health conditions of concern observed in her own community, including allergies, autoimmune and immune disorders, asthma and pulmonary disease, colon diseases, reproductive cancers, menstrual and fertility issues in women, diabetes and metabolic disorders, thyroid disease, cholesterol and liver disease, osteoarthritis and osteoporosis, cognitive and developmental disorders, neurological issues, brain cancer, kidney diseases, and bladder cancer. Mello further argued for the benefits of data collection in exposed communities by highlighting the value of PFAS exposure and health assessment in a tailored public health response. For example, Mello said, blood testing could facilitate identification of communities more likely to be immunocompromised due to PFAS exposure when designing COVID-19 intervention or protocols.
Even in the absence of information framing PFAS exposure levels in relation to specific health outcomes, however, Mello said exposure assessment is critical for affected communities. Mello described the contamination occurring in exposed communities as an intentional crime, without the same protections afforded to victims of equally degrading crimes. Mello argued that the accessibility and implementation of such testing validates and respects the plight of those contaminated without their knowledge or consent, akin to respecting the rights of a crime victim.
Mello also commented on the ubiquity of PFAS exposure in the general population, pointing out that scientists have identified thousands of PFAS while only nine are being considered as part of the committee’s study. She further pointed out exposure vectors relevant to the general public, including the air and consumer products.
Mello encouraged the committee to recommend amending guidance for health care practitioners to better support exposure reduction, ensure respect and support for those exposed, and enable equitable and voluntary data collection to assess PFAS levels and associated health effects. Additionally, Mello emphasized the importance of patient agency and fully informed consent during the care process. She also stressed the immediate need to use existing knowledge to revise clinician guidance and treatment plans for those currently exposed to PFAS, rather than waiting for further data. She also recommended the utility of future monitoring and a voluntary national database of exposure and health effects information so exposure and health data can be stored and further explored.
“So we were asked as community liaisons what challenges we have had with our medical providers in dealing with PFAS exposure, and the challenge is that there’s just no helpful information.”
“You don’t have a problem getting an insurance assessor when your car is hit, you don’t have a problem getting an insurance assessor when you have a tornado, but this slow-motion unfolding environmental and public health disaster … is intentionally keeping the information from us so that we cannot take action.” Kristen Mello
Tracy Carluccio (Delaware Riverkeeper Network)
Tracy Carluccio summarized perspectives as a community activist and advocate based in New Jersey. Carluccio contextualized her perspectives by describing the scope of ongoing PFAS contamination and action in New Jersey. She acknowledged the state’s heavy burden of legacy and novel environmental contamination, including prolific PFAS contamination, caused by several companies such as DuPont, 3M, and Solvay. In response, the state has taken ground-breaking regulatory steps to address PFAS, and it was the first to adopt maximum contaminant levels (MCLs) for drinking water that were lower than the health advisory guidelines proposed by the U.S. Environmental Protection Agency (EPA).
Despite New Jersey’s progressive stance on PFAS, however, Carluccio said that the narrative in the state is primarily driven by affected communities, and large information gaps still exist. Some blood testing has been carried out in specific localities, but there has been limited blood testing across the state or near specific industrial sites. The PFAS crisis in New Jersey cannot be fully understood until the public has access to data claimed as confidential business information by companies producing or using PFAS, she said. Additionally, Carluccio argued, thorough exposure assessment, health studies, and medical monitoring must be carried out to fully characterize the scope of PFAS contamination and related effects for New Jersey residents.
Carluccio provided two specific examples to underscore the importance of community access to information and monitoring in pursuit of the most appropriate health care. She described legacy and emerging PFAS contamination originating from Solvay, an industrial user of PFAS located in West Deptford. Industrial activities by the company were found to contaminate the drinking water of 50,000 residents of the surrounding area with legacy PFNA,4 first identified in 2013. Since that time, the company has shifted to new PFAS to replace legacy compounds, while providing little information to the community about the occurrence and health implications of these new compounds. Carluccio also stated that the company has thus far refused to comply with a state directive requiring PFAS users and producers to provide information about production activities to the state, prompting a lawsuit.
The lack of data describing community exposure around Solvay has left the community in a precarious position, unable to appropriately steer their own health care and family choices. Carluccio also detailed PFAS exposure in communities adjacent to military bases in the state. She emphasized that company and agency recalcitrance to share information about legacy and novel PFAS use and contamination actively thwarts the needs of surrounding communities. She suggested that “ignorance is not bliss,” as it may lead to misinformed health decisions; instead, informed community members gain
agency and can best decide whether they want to avoid tap water, install additional drinking water treatment, move out of a contaminated area, or consider exposure in making reproductive and family decisions.
Loreen Hackett (PFOA Project New York)
Loreen Hackett provided insight about her experiences as an organizer from Hoosick Falls, New York. In 2015 the town was found to be severely contaminated with PFAS, specifically PFOA,5 and has since been designated as the first PFOA site on the EPA Superfund national priorities list in the United States. The town is now home to three federal sites, as well as several additional state Superfund site declarations, with more currently being investigated in the small community.
Hackett detailed her intimate experiences with PFOA contamination by citing the highly elevated levels of PFOA found in her own blood and the blood of her grandchildren, comparing these staggering figures to national averages that are hundreds of times lower. Hackett commented that the alarming levels found in her family’s blood required guidance from health care professionals, yet thus far her family and community health care needs have been poorly met in a clinical setting. As an example, Hackett described a situation shortly after the community learned about exposure. The New York Department of Health organized a community meeting with a pediatrician who lacked PFAS expertise. The pediatrician responded to community questions about health concerns by stating “I don’t believe any of your illnesses are caused by PFOA.” Hackett described feeling mortified and frustrated at this response, given the community was familiar with existing research that decisively indicated the opposite.
Hackett also described results from a community health study that supported the community’s concerns, listing cases of kidney cancer, testicular cancer, thyroid disease, pregnancy-induced hypertension, and ulcerative colitis in the community. Hackett stated the people had to do research for themselves, which was arduous and confusing at times. This fact-finding process took up valuable time that could have helped mitigate exposure-related effects in the community. Hackett indicated that state and local regulatory agencies are now taking PFAS contamination more seriously, with the state setting more protective drinking water MCLs and continued community blood testing.
Hackett stated that too few doctors are trained in the ramifications of environmental toxins and associated care protocols. As a result, Hackett described her habit of bringing research studies to appointments with specialists or unfamiliar doctors to illustrate relationships between PFAS exposure and health effects. She indicated that few listen, and she is reluctant or unwilling to follow up with those who do not listen, therefore missing out on further treatment and testing options, as well as any associated benefits.
Hackett also mentioned that Hoosick Falls residents often rely on the closest hospital, which is in Bennington, Vermont, which is itself a PFAS-contaminated community. Yet even there, Hackett stated, many health care providers are unaware of PFAS and associated health implications. She provided an example in which a provider suggested her breast cancer was genetic despite family history and medical history suggesting otherwise. She articulated that health care practitioners unfamiliar with the issue often made her feel intellectually inferior because of her lack of formal medical credentials, rather than acknowledging and validating her significant health concerns. She stated this dynamic continues to occur even with health care providers directly situated in currently contaminated communities.
Hackett also provided an example depicting the benefit of informed health care, by stating that a local general practitioner took time to learn about the medical ramifications of PFAS exposure; this awareness has resulted in concerted follow-up on PFAS-related health issues in the immediate community to keep pace with the emergence of health effects. Hackett suggested the implementation of continuing education credits to incentivize continued training on environmental health issues for health care practitioners.
Hackett also stressed the need to establish new health care paradigms and protocols specifically tailored to exposed communities. For example, she questioned whether blood donation is safe in highly exposed communities like Hoosick Falls. Additionally, she suggested that exposed women should be informed by obstetrical/gynecological care providers that PFAS will be passed to babies in utero and in breast milk. Health care mantras like “breast milk is best” need to be thoroughly reevaluated in exposed communities, given that breastfeeding may double or triple PFAS levels in infants in comparison with their mothers’ levels. Families in exposed communities cannot make informed reproductive choices or other family decisions without information tailored to their situation. Hackett relayed concerns from community members now expressing guilt at unknowingly poisoning their child over the course of pregnancy and breastfeeding. Hackett also suggested that health care norms, such as visiting times, need to be adjusted to better fit environmental concerns because health care discussion about PFAS require more attention than a short office visit.
Hackett emphasized the need for health care professionals to trust their patients and their observations and knowledge on PFAS issues. By trusting local community members, practitioners and scientists can better use community data and experiences in building effective health care for people who have been exposed. Hackett described her participation on the Community Advisory Panel with University of Albany for their CDC-awarded multisite study, collecting and sharing published health studies related to PFAS for the study website. Working in this context, Hackett stated, the study design has shifted to include more tests beyond liver, kidney, and thyroid function, as immune suppression, endocrine disruption, neurological effects, reproductive issues, and breast cancer become increasingly salient community concerns.
Hackett also detailed ongoing contamination concerns in her community due to continued stack emissions and exposure to unregulated, short-chain compounds designed to replace PFOA that studies show to be as toxic as long-chain, legacy PFAAs.6 As a result of regrettable substitution, Hackett advised that bioaccumulation and total body burden of numerous PFAS has to be considered for those requesting medical direction through continued blood testing beyond the limited number of PFAS currently under scrutiny.
Patrick Elder (Military Poisons)
Patrick Elder articulated concerns and insights about the understudied role of PFAS exposure from food. Elder stated that he believes there is too much emphasis on PFAS levels in drinking water, with too limited a focus on PFAS exposure from food, particularly seafood. Elder contextualized this position by detailing his experiences testing surface water and seafood items near his home in southern Maryland, adjacent to the Naval Air Station Patuxent River Webster Field Annex. Elder’s efforts resulted in the detection of significant PFAS concentrations in surface water and seafood items. Elder published the results in the local press, leading to concern and outrage in the community. He indicated that a subsequent public meeting with Navy officials resulted in an unsatisfactory exchange of information with the local community, as Navy officials reiterated that the chemicals in question were no longer in use and there was no medical treatment to reduce PFAS in the human body. The community sought increased testing on seafood items and water, expressing disagreement with the Navy’s assertion that not enough is known about PFAS in seafood and the human body to justify immediate intervention.
Elder further highlighted the untenable data gaps for PFAS in food in the United States through a comparison: the European Food Safety Authority recommendations suggest up to 86 percent of PFAS exposure stems from food intake while the U.S. Food and Drug Administration (FDA) issued a statement suggesting there is no evidence that dietary choices should consider PFAS contamination. Overall, Elder emphasized the importance of better limiting PFAS exposure from food and seafood items in the United States and incorporating this vector of exposure when considering health effects and health studies.
Hope Grosse (Buxmont Coalition for Safer Water)
Hope Grosse described her experiences in Bucks and Montgomery counties (BuxMont), Pennsylvania. Grosse described a lifetime of exposure due to drinking water contaminated by AFFF use at Warminster Naval Base and Willow Grove Naval Air Station.
Grosse reported that people in the BuxMont community have voiced concern regarding their PFAS exposure and a number of diseases and health conditions including thyroid cancer, non-Hodgkin’s lymphoma, kidney cancer, testicular cancer, breast cancer, liver cancer, brain tumors, ovarian cancer, lung cancer, bladder cancer, melanoma, bone cancer, altered metabolism and obesity, fertility issues, birth defects, diabetes, cholesterol, high blood pressure, preeclampsia in pregnant women, decreased infant birthweight, autoimmune diseases, chronic inflammation, immune response, and alterations in liver enzyme levels. The implications of exposure are not limited to physical ailments: the community has also collectively experienced serious experiences with fear, anxiety, grief, emotional and physical stress, and a feeling of being forgotten.
Grosse said she personally wrestles with an unbelievable lack of trust, fear, and emotional scars accumulated related to the premature death of her father, her own early cancer diagnosis, and deaths of multiple cherished community members. Grosse further revealed that she struggles with shame and fear due to the feeling that she inadvertently poisoned children because she was unaware of her exposure. Grosse also described the financial stress imposed on exposed communities to pay for bottled water, increased public water rates, home filtration, diagnostic testing, medical fees, and loss of wages due to health issues and related loss of productivity.
Grosse stressed the importance of increased awareness and resources to better educate health care practitioners about the health effects of PFAS. She indicated that communities need to be able to trust that their caregivers and practitioners are knowledgeable on the issue and capable of advising action to address their concerns. She stated that the community feels they have no local medical resources or health care providers to answer their questions or advocate for them in the health care system. During her own health struggles, she said she felt belittled and embarrassed for asking questions about environmental health and its relation to her health maladies. Grosse recommended considering practical measures to improve the patient experience for exposed people, such as requiring questions about exposure history or concerns in health questionnaires and forms or designing better collaborations between insurance companies and physicians so practitioners can readily issue scripts for bloodwork and diagnostics that are covered by insurance.
Grosse stressed that such clinical guidance must particularly provide proper direction detailing how to best protect and treat children, given the particular risks of PFAS exposure during critical developmental periods. Mothers need awareness and guidance to test for PFAS in blood and breast milk and make effective parenting choices based on exposure results to best safeguard children in utero or during breastfeeding. Grosse mentioned she lacked such information and agency raising her own children and would have greatly valued the knowledge and associated opportunity to switch to filtered water or bottle-feed her children to reduce their early-life exposures.
Grosse also emphasized that blood testing remains imperative to characterize exposure and changes in PFAS blood levels over time. Grosse posited that the value of blood testing is not predicated on how well the derived information can be explained or compared to thresholds. Rather, documentation of the exposure can retrospectively serve communities, as health science progresses to more fully understand the health ramifications of exposure. Grosse also asserted that blood testing facilitates appropriate health planning, as exposed individuals have a right to preventive health measures and testing tailored to their exposure reality, such as titer testing to deduce PFAS-altered vaccine responses or tests for PSA and liver enzymes.
“When I would go to the doctor’s and tell them about some of the exposures of over 50 chemicals that I was exposed to, the doctors would laugh and say no. Clearly they didn’t have any information about
environmental components [of disease]. They made me feel small, they made me feel stupid and embarrassed even just asking the question.” Hope Grosse
Le’Meshia Whittington (North Carolina Black Alliance)
Le’Meshia Whittington discussed the perspectives and needs of Black and Brown communities in North Carolina. Whittington emphasized that Black and Brown communities face cumulative impacts in addition to environmental health concerns, resulting in disparate burdens and concerns for exposed minority communities well beyond drinking water. Whittington exemplified this reality as related to PFAS exposure in the Cape Fear River system in southeastern North Carolina. In 2017, the public learned about significant PFAS contamination in regional surface water and drinking water due to the industrial activities of Chemours in Fayetteville, North Carolina. Whittington highlighted that this news broke amid a history of climate-related disasters (e.g., hurricanes) that repeatedly damaged the regional water system over decades. As a result, with the occurrence of Hurricane Florence in 2018, regional communities were severely affected by floodwaters contaminated with coal ash, animal waste, and industrial wastes, as well as PFAS. However, the ramifications of PFAS-laden floodwaters were not addressed following Florence.
Whittington described the multifaceted and overlapping exposure vectors of concern for Black and Brown communities, highlighting that the interplay of these factors can cause undue cumulative exposure and subsequent harm. She highlighted that about 35 percent of North Carolinians are renters, leading to potential exposure from carpets, textiles, and building materials with no capacity to remove or replace these items. Whittington also pointed out 80 of the state’s 100 counties are considered food deserts or contain food deserts, where residents face significant hurdles accessing fresh fruits, vegetables, and other sustainable foods. In these areas, people may unduly rely on packaged, processed, and fast foods prepared using PFAS-laden water, following storage or transport in food packaging materials that contain PFAS. This type of food sourcing leads to concentrated PFAS exposure. Whittington again highlighted the additive impact of many cumulative factors, noting many of these food desert areas in North Carolina are downstream from continued contamination from Chemours and are also routinely affected by climate-related flooding events.
Whittington also pointed out that occupational exposures require increased health monitoring, considering the cumulative risk imposed when different industrial activities collide in a given region. She stated that more information is needed describing how food service, essential, agricultural, and industrial workers may be exposed occupationally given inherent contact with potential PFAS sources in those jobs, as well as increased risk to those workers when their employment location is in a region rife with known contamination. For example, Whittington questioned how agricultural and abattoir workers who work in PFAS-contaminated zones may be routinely exposed through industrial air emissions and constant contact with PFAS-imbued agricultural products. Whittington suggested increased institutional study and support for workers through the Occupational Safety and Health Administration or other agencies, and the need for increased health care provisions for those closer in proximity and more consistently exposed to this group of chemicals.
Whittington also highlighted high-priority populations within wider Black and Brown communities. She identified pregnant women and children as two such priority populations given the demonstrated opportunity for maternal transmission of PFAS to their children. Whittington stressed the need for blood testing for expecting parents and children, and increased attention to fertility concerns. Whittington also highlighted veterans, people in law enforcement custody, people with disabilities, firefighters, residents of care and extended-stay facilities, and students as underserved priority populations. She stated that blood testing for PFAS should be made available and accessible to these and all demographic groups, with a critical need for exposure assessment over time.
Furthermore, Whittington stressed, it is important to have updated clinical guidance about PFAS blood testing, health concerns, and standards of care for health care professionals. This information must be disseminated among the wide range of practitioners, agencies, and institutions serving high-priority populations and wider Black and Brown communities. Whittington stressed that such guidance is also
urgently needed to ensure health insurance claims related to PFAS exposure are viable and compensable, increasing access to exposure-informed health care.
“This is what we are asking: our communities are willing to undergo testing, they will participate in studies, it just needs to be designed for our communities, alongside our communities.” Le’Meshia Whittington
Mike Watters (Gray’s Creek Residents United Against PFAS in Our Wells and Rivers)
Mike Watters provided perspective as a resident of a community affected by the industrial activities of Chemours in Cumberland and Bladen counties in North Carolina. Watters described concerted efforts to engage his community to ensure awareness and engagement. One such effort included a community health survey of 100 people that highlighted shared community health concerns related to PFAS exposure, including thyroid function and hyperthyroidism, weight gain, arthritis, asthma, autoimmune disorders, skin cancer, chronic inflammatory conditions, vitamin D deficiency, type 2 diabetes, prediabetes, hair loss, high blood pressure, high cholesterol, high triglycerides, irritable bowel syndrome, and itchy scalp. Watters emphasized that continued measurements of PFAS in blood are urgent to associate these health concerns with PFAS concentrations and to allow health studies to catch up with the state of exposure. Watters also stressed the value to the community of baseline exposure assessment and the importance of tracking exposure over time through continued blood testing given evolving exposure scenarios. This work is currently being done through the North Carolina State University GenX (PFAS) Exposure Study with participation from people in the community, as well as pets from their homes.
Watters also discussed understudied vectors of exposure, such as fish, air, rain, locally grown vegetables, cooking water, cleaning water, clothing washed in contaminated water, and showers. The contribution of these sources to PFAS exposure and associated health outcomes are poorly characterized. These understudied exposure sources therefore stand as sustained concerns for community members. Watters suggested the continued need for more monitoring to keep pace with the unique exposure scenario in North Carolina and to address these understudied routes of exposure, given growing evidence that air emissions of novel PFAS continue to affect a growing number of residents across the region.
Emily Donovan (Clean Cape Fear)
Emily Donovan provided insight about the community experience of residents in southeastern North Carolina subject to high levels of PFAS exposure. Donovan explained that regional communities have been overexposed to hundreds of novel and legacy PFAS for decades because of regional industrial activities and that contamination is continuing. Donovan noted that existing health guidance does not adequately address the amount or types of ongoing PFAS exposure in the state. She also described the frustrating inability of state and federal agencies to halt ongoing discharge of the complex PFAS mixture impacting the region. She noted the prevalence of PFAS occurrence in regional wildlife, sediment, rainwater, and consumer products, pointing out that communities in the region are concerned about PFAS exposure from these and other sources given the excessive PFAS exposure from their drinking water. Donovan said that clinical guidance tailored to ongoing exposure in the state must consider this and protect community members from routes of exposures beyond drinking water.
Donovan noted the community’s limited capacity to obtain blood testing for the suite of PFAS found in North Carolina as a major and exasperating challenge. Analytical methods that screen for all relevant PFAS are uncommon, and those that do exist are expensive or possess detection limits that are too high to be useful. Donovan mentioned that she has heard commentary that the exposure profile experienced in southeast North Carolina is “too unique” to warrant development of rigorous testing; she countered this idea by highlighting the use of PFAS produced by Chemours at manufacturing facilities across the nation.
Donovan cited the GenX Exposure Study as an example of blood testing that occurred regionally, which found a range of novel and legacy PFAS in 400 local residents. However, she asserted that a larger proportion of the more than 300,000 people exposed should be included in further testing, citing the opportunity for the population to be used in larger health effects studies, given the long history of unique exposure across the area and documented health concerns shared across the population. She asserted this overexposed, large population is the “statistical power” required to identify understudied health effects so far missed by institutional investigation.
Donovan presented specific and heart-wrenching examples of personal contacts who are currently uncertain and worried about links between serious health conditions and their history of exposure. She detailed a litany of regional health concerns, including pediatric bone cancers, osteosarcoma and brain tumors, pediatric kidney cancers and diseases, bladder cancer, gallbladder dysfunction, testicular cancer, pancreatic cancer, liver cancer, nonalcoholic fatty liver disease, leukemia, blood cancers, colon cancer, thyroid cancer and dysfunction, autoimmune diseases, digestive issues, multiple sclerosis, skin disorders, infertility, premature births, developmental delays, learning disabilities, autism, breast cancer, and non-Hodgkin’s lymphoma.
Donovan stated that the currently available data indicate increased risk of negative health effects, including birth defects, kidney disease, and increased cholesterol related to PFOA exposure. However, many PFAS found in southeast North Carolina were designed as replacements for PFOA, yet no such thresholds exist for these next-generation PFAS. Donovan stated that North Carolina communities and beyond need relevant clinical guidance that adequately identifies, protects, and monitors those who have high levels of diverse PFAS exposure, as current clinician guidance falls well short of these goals. Donovan specified that the regional community needs information about relationships between specific health outcomes and cumulative serum levels for total PFAS in their blood. Health care guidance must consider the complex mixture of exposures experienced by communities and go beyond clinical guidance for legacy PFAS. Donovan cited her current experience as an example, where she often finds herself informing her children’s pediatrician about the most current research rather than vice versa; she described this as counterintuitive and discouraging.
Donovan exhorted the committee to investigate information gaps confounding or limiting health studies, suggesting that underreporting of relevant toxicity and health data by corporate producers contributes to damaging data gaps. Donovan stated the committee and the public should have full access to industry data related to production, toxicity, and health outcomes to fully explore the range of linkages between human health and complex PFAS exposures in this region.
“Sadly, it feels like guinea pigs are treated better, because at least their exposures are thoroughly studied for the betterment of humanity.”
“At the moment I’m informing my pediatrician about the latest toxicity studies related to PFAS placental transfer and breast milk contamination. This is backwards and depressing.” Emily Donovan
Cheryl Cail (South Carolina Indian Affairs Commission/SC Idle No More)
Cheryl Cail discussed her experiences as a Native American community member and a member of a PFAS-impacted community in Horry County, South Carolina.
The path to PFAS advocacy started for Cail when her 20-year-old son Trevor was diagnosed with testicular cancer. She shared a photo of her son’s back showing bright red spots indicative of unknown but acute dermatitis. Cail explained they went to the doctor to identify a cause and solution; the local doctor was not aware of environmental health concerns and did not ask the right questions to quickly arrive at a diagnosis. As a result, Trevor’s cancer progressed unchecked for 9 months.
Cail related that Trevor was working and attending school adjacent to Myrtle Beach Air Force Base, though at the time they did not realize the importance of this location and their regional exposure. Cail explained they then watched a movie entitled “The Devil We Know” about PFAS contamination in
West Virginia, and she started questioning whether PFAS were the cause of Trevor’s testicular cancer given the demonstrated link between this type of cancer and PFOA exposure. The family also found a map detailing PFAS contaminated sites around the United States and realized their community’s proximity to Myrtle Beach Air Force Base was problematic, as massive concentrations of PFAS had been found in the environment around the base despite remedial activities. Cail noted that right before the COVID-19 pandemic more state agencies began mobilizing to address the issue within her community and across the state, but this was only after years of inaction. She noted that she had seen this before, as institutions prioritize “wealth before health.”
With more information about regional PFAS exposures, Cail and her family started trying to find answers from the medical community regarding how to get PFAS blood testing and how to get treatment for their exposure and related health effects. Cail mentioned that while her community is only beginning to understand the scope of PFAS contamination and related health effects, they have seen a concerning increase in cancers, autoimmune disorders, fertility issues, and birth-related defects. She stated that regional physicians were unaware of PFAS, its effects, and even the regional exposure event itself. Cail also described searching for PFAS blood testing options and the frustrating experience of trying to relay that information to a local physician. They found that regional testing was limited to people with occupational-related exposure, such as firefighters. Cail related that this left her son feeling defeated, but she saw a challenge that the committee and other PFAS-focused organizations could resolve.
Cail closed her statements by detailing specific asks from the committee, such as establishing PFAS as an environmental health issue and educating those working in the medical community. This education should involve establishing testing and treatment protocols for those in affected communities and those with diagnosed medical conditions linked to PFAS. She also petitioned the committee to seek expansive data collection to meaningfully assess the full scope of PFAS health effects in order to best design health-related services in exposed communities, including monitoring for children. Cail also relayed a statement from a local physician who has now treated thousands of exposed individuals in her community, who said that physicians need a protocol much like the protocol for lead poisoning; it is a nationwide issue, and so is PFAS poisoning.
Stel Bailey (Fight for Zero)
Stel Bailey offered perspectives as a cancer survivor and member of a military family from Florida’s space coast. Bailey first recounted her personal journey with PFAS exposure to explain her path to advocacy. She explained that while her husband was deployed, multiple family members were diagnosed with various cancers in a span of a few months. Given this unusual frequency, she herself was told by multiple doctors that it was “impossible” for her to have cancer, and six different doctors provided care prior to reaching a cancer diagnosis despite continued breathing problems and swollen glands.
Within this harrowing process, Bailey was asked, “where did you grow up?” and subsequently made it her life’s work to figure out how and why her background might be related to cancer outcomes. This endeavor took a major turn in 2018 with the release of a key report from the U.S. Department of Defense (DoD) explaining that the region around the facilities of the National Aeronautics and Space Administration, Cape Canaveral Air Force Base, and Patrick Air Force Base was highly contaminated with PFAS, with up to 4.3 million parts per trillion (ppt) of PFOS7 and PFOA found in surrounding groundwater.
As a result of that report and prior community work investigating autoimmune and cancer cases in the surrounding population, Bailey connected with oncologist Julie Greenwalt. This physician went to high school near Patrick Air Force Base and was aware that dozens of high school classmates had since been diagnosed with cancer, starting at very young ages. Bailey stressed the importance of this advocate and resource for their community, stating “this support meant everything in our community.” Bailey suggested that without Greenwalt’s personal experience and concern, the surrounding community would
still be woefully unaware of health issues related to their substantial PFAS exposure. Since 2018, Dr. Greenwalt has helped the community document 54 cases of various types of cancer in individuals under age 40, which served to bring awareness and resources to the issue. This community health information also helped frame relationships between health outcomes and PFAS levels in drinking water after it was discovered that regional drinking water was also grossly contaminated with PFAS. Bailey chronicled that a large group of people in the community helped crowdsource community health information and address this issue, yet many have been lost since the 2018 DoD report revealing the scope of contamination, including a girl who passed away from brain cancer just 3 days after her 17th birthday.
Community efforts have more recently focused on mapping autoimmune and cancer cases surrounding Patrick Air Force Base. Using this crowdsourced data, the community was able to push forward their own health assessment in the county. The assessment found an increased risk of certain cancers, including urinary, bladder, leukemia, liver, lymphoma, breast, and testicular cancer. Other concerns captured by the health assessment include liver damage, increased risk of thyroid disease, and birth defects. Bailey also described continued routes of exposure that concern the community, such as consumption of regional fish and wildlife and produce irrigated with contaminated water. Bailey mentioned that drinking water and groundwater contamination remain problematic, noting the emergence of short-chain, understudied compounds such as PFBA8 in these sources.
Bailey emphasized that her primary message to the committee centers on the fact that early detection of cancer saves lives and reduces health care costs. Since learning about the PFAS problem in tandem with regional medical resources encouraging care, Bailey provided multiple examples of early interventions across the community that served to detect or treat cancer or other health problems before severe disease. Bailey concluded by outlining specific community needs from health care providers, including physician education, medical monitoring, PFAS blood testing, preventive health screening and assessments, documentation on medical records of PFAS exposure and environmental health attributes, and recognized guidance that ensures insurance coverage. Bailey particularly emphasized the need to normalize the inclusion of such questions as “Have you been exposed to any environmental toxins or chemicals in your home or workplace?” and “Where do you live?” on medical forms and records.
“We are doing physicians a big disservice by not providing them the help or information. Lacking this guidance is only harming people. We need action to save lives now.” Stel Bailey
Several other people at the Eastern Town Hall provided public testimony, which is available on YouTube9:
8 Perfluorobutanoic acid is a PFAS; see Chapter 1.
9 See https://www.youtube.com/watch?v=YrYSj9BPbEQ&list=PLGTMA6QkejfimvAGwR7o_7hP9nXbfFfcr&index=24 (accessed June 29, 2022).
MIDDLE TOWN HALL
Andi Rich (Save Our Water [S.O.H2O])
Andi Rich offered insight as a community member from Marinette, Wisconsin, home to the JCI Fire Technology Center. This site is considered the third-largest PFAS contamination site in the United States. Rich described the extent of contamination around the site, stating that PFAS levels in groundwater around the site reach 400,000 ppt, and the contamination plume has spread for miles around the site. Rich mentioned community concern about discharge of PFAS-laden effluent into regional surface waters, application of contaminated biosolids on agricultural lands, and potential air contamination related to continued onsite outdoor testing involving unknown PFAS.
Rich also described an ongoing class action lawsuit focused on PFOA and PFOS levels in well water, noting that the suit does not consider people exposed through other, more complex exposure pathways that affect the community. Rich indicated this leaves residents poorly informed and inadequately prepared to make decisions in the lawsuit, which in turn affects the fairness of payout claims. She said that lawsuit participants and community members have repeatedly requested blood testing and medical monitoring to further understand their exposure. These requests have been met with sustained resistance. Rich indicated that the community has been told that PFAS exposure does not equate to illness, that blood testing would not be useful, and that blood testing is not recommended. Rich pointed out that blood testing would be highly useful to ensure lawsuit payouts are based on internal exposure, as payouts are currently slated to be distributed arbitrarily.
Rich shared some personal health history to further highlight the utility of PFAS blood testing and care guidelines for practitioners. She related that a physician recommended bloodwork to check thyroid function, which overwhelmed and frustrated Rich given her awareness of the association between PFAS exposure and thyroid health. The doctor tried to comfort Rich, but Rich found out the doctor was visiting from Nashville and had no knowledge of local exposure issues. Rich stated that practices such as traveling practitioners makes blood testing, medical monitoring, and results-based guidelines that much more imperative to ensure environmental health factors are comprehensively and continuously considered by transient health care providers. Rich also stated that she has not yet sought the recommended thyroid bloodwork, due to logistical constraints, though she said she would be far more likely to prioritize followup if blood testing indicated PFAS exposure. Rich compared the utility of PFAS blood testing to the breast cancer gene (BRCA) test that detects a person’s genetic proclivity for the disease. Each test serves as an indication of the increased potential for illness that can inform preventive care routines.
Rich went on to state that Marinette is an impoverished community where few can afford the cost of PFAS blood testing. The majority of community members have been denied covered testing through state agencies and insurance providers. Rich said that the committee’s recommendations have the potential to improve care and community health outcomes by making sought-after care accessible and affordable, and she urged the committee to recommend blood testing and medical monitoring for residents in exposed communities, ensuring those exposed through complex pathways are included. Rich also emphasized that the committee should actively avoid “not doing anything because of lack of data, and not collecting data because of a lack of evidence of harm.”
“How can above average incidence of PFAS-related illness be identified in a community where the doctors aren’t in town long enough to identify the trend?”
“We need help putting a stop to the contamination, as the corporate polluters are far more powerful than our voices.” Andi Rich
Laura Olah (Citizens for Safe Water Around Badger)
Laura Olah commented as a community member affected by the Badger Army Ammunition Plant in Wisconsin. Olah’s remarks focused on the major lack of exposure information available to the public and the urgent need for medical monitoring. Olah stated that minimizing PFAS exposure leads to reduced health risks, but communities and physicians trying to accomplish this run into challenges trying to obtain PFAS exposure information in individuals and in the environment. She provided several examples illustrating the pervasive institutional secrecy that prevents transparency about exposure and risk.
She described a public meeting hosted by the U.S. Army to discuss groundwater contamination that has migrated offsite, contaminating rural drinking water wells and discharging into the Wisconsin River. Hydrogeological experts recommended testing drinking wells beyond the currently monitored area, including on the other side of the Wisconsin River. Army personnel argued against this, saying there would be no way to ensure PFAS in well water was derived from the base, and they were not certain which wells should be tested. Olah highlighted this as “ridiculous,” pointing out that all wells should be tested given uncertainty about which wells are most at risk as there are no offsite groundwater data. Olah also described several frustrating experiences seeking existing information about PFAS in drinking water. For example, a request for information about PFAS in drinking water around Volk Air National Guard base required a formal Freedom of Information Act request, which has now been pending for 3 years. Another request for a written report describing PFAS contamination around a military base in Tennessee was also unmet, and is now 2 years old. Olah also highlighted that this lack of transparency was not limited to the military, as private corporations refer to PFAS products like AFFF formulations as proprietary mixtures or confidential business information and do not disclose PFAS content in their products. This lack of information makes it impossible to assess and prevent exposure and possible health risks.
Olah asserted that we cannot predict the potential implications and future benefits of medical testing today, but without these data, exposed communities face battles akin to Vietnam War veterans who are still fighting for presumptive care based on exposure to Agent Orange and other toxicants. PFAS blood testing helps baseline exposures and raises awareness so people can take steps in reducing exposures. Baseline testing could help answer health questions in the future and help secure health studies in communities at risk
“Given all these barriers [to PFAS exposure information], the public and the medical community cannot identify which patients are at greatest risk to and harm from PFAS; therefore, our care must be presumptive.”
“Without medical monitoring data now, presumptive care will be out of reach for civilians and service members and children exposed to PFAS now and in 50 years from now.” Laura Olah
Samraa Luqman (Concerned Residents for South Dearborn)
Samraa Luqman offered insights as an environmental advocate and a Yemeni-American community member from the South End in Dearborn, Michigan. Luqman framed her remarks by providing context about her community, describing the South End of Dearborn as a community that grew around Ford Motor Company. The continued need for cheap labor attracted immigrant populations over time, with a more recent influx of Middle Eastern immigrants. A high percentage of the population possess limited English skills, are considered low income, rely on some kind of food or government assistance, and rent their homes. The surrounding area is also home to various industrial activities, in addition to the Ford Motor Company, that use diverse types of environmental pollution. PFAS contamination has recently been identified in the area, resulting in the inclusion of the town on Michigan’s PFAS Action Response Team website.
Luqman went on to highlight the importance of considering PFAS exposure beyond drinking water, including inhalation, dermal contact, and maternal offloading of PFAS from mother to child. These understudied exposure vectors are ongoing in the South End, along with continuous air quality issues, lead exposure, and other environmental health concerns. Luqman emphasized the importance of considering such cumulative multiple exposures, citing sustained community concern about deciphering causality or relationships between observed health effects and PFAS in what is clearly a complex exposure scenario. Luqman highlighted that PFAS blood testing can help clarify required follow-up care by identifying exposed individuals most prone to PFAS-related health effects. Luqman expressed particular concern about the relationship between PFAS exposure and immune impacts in the context of the ongoing COVID-19 pandemic. She stated that COVID-19 outcomes have been worse for her community compared with nonexposed communities. She also stated that a lack of PFAS exposure information for her community affects behavioral choices with real-world consequences. Luqman offered the example that someone from the South End exposed to PFAS may be more vulnerable to COVID-19 and require more diligent mask use compared with someone residing 10 miles away, but would never know this given the ongoing lack of exposure information.
Luqman also discussed the need for medical professionals to have awareness about environmental contamination and its potential implications, even decades after a person’s leaving a contaminated area. She highlighted that health risks from environmental exposures must be assessed and considered by state agencies and health care practitioners; then this information must be provided to residents and patients to ensure full awareness of exposure. She provided an example of a community member who moved away from the South End area and is now dealing with cancer approximately 20 years later. Luqman stated that this person’s doctor explained to them that despite moving away, the carcinogens and pollutants accrued while in the area do not go away. Luqman also underscored the need for health and exposure information to be communicated in culturally appropriate ways, acknowledging and overcoming language and sociocultural barriers.
Cathy Wusterbarth (Need Our Water)
Cathy Wusterbarth offered insights as a community member from Oscoda, Michigan. This community is adjacent to the Wurtsmith Air Force Base and is subject to major contamination of regional groundwater and surface water from AFFF use on the base. This widespread contamination has resulted in historical and ongoing PFAS exposure for service and community members, as well as the area’s fish and wildlife.
Wusterbarth’s remarks focused on several primary community needs: PFAS blood testing, improved guidance for health care practitioners, exposure assessment in the environment, and exposure mitigation. Wusterbarth highlighted the movie No Defense as a crucial example of the health effects of PFAS contamination. The film chronicles the serious lifelong health effects experienced by Mitchell Minor and his family, residents of Oscoda. Wusterbarth also introduced James Bussey, a service member in Oscoda. Wusterbarth explained that Bussey was too ill to present to the committee, but had asked her to provide his medical records for committee consideration. These records include a long list of ailments and physician recommendations based on his exposure to PFAS, which was documented through blood testing.
Wusterbarth emphasized that these real-world examples capture a crucial disconnect between exposure information and health outcomes, which can easily be rectified by improved access to PFAS blood testing. Wusterbarth declared testing should begin immediately to establish baseline exposure levels. Annual testing should occur thereafter, just as is done for other risk factor measurements, such as cholesterol. Wusterbath also identified that given the presence of PFAS in 98 percent of the U.S. population, everyone should have access to blood testing. However, priority should be given to communities and individuals with identified or hypothesized high-level PFAS exposure. Wusterbarth also suggested that testing should be implemented using simple, affordable labs, highlighting a recently opened laboratory in Oscoda as an example. Wusterbarth also recommended that all PFAS be included in
blood testing, unless specific PFAS measurements are required to discern the role and liability of a specific polluter or product.
Wusterbarth further described a crisis of trust, stating that her community was experiencing the degradation of trust with the very institutions they believed would protect them, such as EPA, other government agencies, and the military. She detailed discouraging recent information from the DoD, noting that more than 700 military installations have now been recognized as PFAS hot spots, starting from just one in 2012. She also stated that health care providers have a duty to discern the causes of disease in their patients, but without guidance from the CDC or other medical authorities, practitioners are unaware of health risks associated with PFAS exposure to the detriment of patient care. Wusterbarth also emphasized the gravity of the committee’s recommendations based on the town halls, stating that state agencies and communities are relying on the forthcoming guidance document to inform physicians and care. She shared a personal experience in which she provided PFAS information to her doctors, only to be told this information was too lengthy to review despite her history of cancer and immunological disease. Wusterbarth stressed the need for swift action by the committee to immediately curtail ongoing harm in exposed communities.
“We’ve tested the fish; we’ve tested the deer; we’ve tested the groundwater, the waterways, and the foam. When are we going to test the people?”
“The only risk [of testing] is to the polluters who do not want us to link them to our exposure.” “This study is a result of the PFAS communities telling you changes are needed.” Cathy Wusterbarth
Sandy Wynn-Stelt (Wolverine Community Advisory Committee, Michigan PFAS Action Response Team)
Sandy Wynn-Stelt lives in a PFAS-impacted community, Belmont, Michigan. Wynn-Stelt opened her remarks by sharing her own story of PFAS exposure. Wynn-Stelt and her husband moved to Belmont in 1992, seeking an idyllic and quiet home. They were not aware that the Christmas tree farm adjacent to the property was a dumping site for a major PFAS user, Wolverine Worldwide. In 2016 her husband’s health rapidly deteriorated, and after only a few short weeks, he died of liver cancer, which Wynn-Stelt described as an unbelievable loss. Shortly thereafter, the Michigan Department of Environment, Great Lakes, and Energy tested her drinking water, and Wynn-Stelt learned the well water she and her husband had drank for more than 20 years was contaminated with PFAS at levels up to 80,000 ppt. On learning about her exposure, Wynn-Stelt sought blood testing. She described this process as challenging. She ultimately paid $800 for blood testing through a commercial laboratory in California. Her bloodwork indicated alarmingly high levels of PFHxS, PFOA, and PFOS, well above levels seen in blood studies as part of the National Health and Nutrition Examination Survey (NHANES) and in some other exposed communities.
Wynn-Stelt followed up with her community doctor regarding her bloodwork results; she described this physician as “very proactive and engaged.” She stated that her doctor reviewed the ATSDR physician and patient guidance about PFAS that was available at the time. They concluded the guidance was not helpful and instead agreed on a plan to monitor those things listed as potential risks of PFAS exposure. As a result, when Wynn-Stelt experienced breathing problems several years later, this physician recommended thyroid testing based on their knowledge of Wynn-Stelt’s PFAS exposure, although this diagnosis would normally be an unlikely candidate. This testing resulted in the identification of thyroid cancer. Wynn-Stelt credits this diagnosis and quick action to prior PFAS blood testing, adding this vital information to her medical history for consideration by her physician.
Wynn-Stelt provided an additional example of a neighbor exposed to PFAS from the same groundwater source. This neighbor’s child received PFAS blood testing and was found to have elevated levels of PFOS. This information was provided to the child’s pediatrician, who then monitored vaccine
response given the child’s exposure history. The child was found to have reduced vaccine responses and required some boosters not normally required. Wynn-Stelt reported similar examples of adverse health effects across the community, with cases of thyroid disease, cancer, kidney disease, liver disease, and cholesterol issues in children and adults. Wynn-Stelt also highlighted the mental and emotional toll of exposure and the lack of discussion of this in exposed communities and in care guidelines.
Wynn-Stelt also took time to address often-cited statements used to deny community access to PFAS blood testing. Wynn-Stelt countered the assertion “that it is not ethical to test for something we can’t treat” by explaining knowledge of environmental health and exposure is just as medically relevant as asking any patient for a history of diabetes or heart disease. All these pieces of information are required for patients and physicians to monitor potential problems and reduce risk. Wynn-Stelt also addressed the concern that patients may panic given hard-to-frame PFAS information: she countered that exposed patients are not fragile, and knowledge is power. Wynn-Stelt labeled the assertion that PFAS levels in blood cannot be definitively linked to health effects, and therefore should not be monitored as circular logic, stating if testing is not occurring at various scales, links cannot be identified, further and erroneously justifying a lack of testing.
Wynn-Stelt closed her remarks by stating explicitly her community’s needs, including accessible PFAS blood testing for people in various exposed communities. She also urged expansive testing for the entire class of PFAS, rather than a few targeted chemicals. Wynn-Stelt also requested research about possible mechanisms to lower PFAS body burdens in exposed individuals and further research to better understand how PFAS levels may impact health care choices, such as blood or organ donation.
Tom Johnson (Clean Water Action)
Tom Johnson shared his perspectives with the committee as an environmental advocate and organizer working with exposed communities across Minnesota and beyond. Johnson explained that much of his work involves public education, seeking to inform people about toxic chemicals overall. When conducting educational activities in the East Metro region of Minnesota, Johnson indicated that PFAS are a central topic of interest, as this area is rife with PFAS producers and users whose activities have massively contaminated the regional environment. This contamination resulted in an $850 million legacy settlement. Johnson suggested that communities are increasingly aware that, although this settlement sum will cover long-term drinking water treatment for all area residents, there will be little or no money left for regional remediation.
Johnson attested to high levels of frustration from exposed communities in the region, with unanswered questions about the likelihood of current or future health effects for families and their children. Despite the lack of citable research, the community possesses large amounts of anecdotal and experiential evidence observed over decades that suggests links to health effects and informs the community concerns. Johnson described the experience of a mother of a low-birthweight baby, who is now concerned about a similar outcome with her second pregnancy. Her doctor has no ability to comment on the likelihood of this outcome given vast uncertainties surrounding her exposure and risk due to a lack of needed exposure assessment and health effects research. Johnson also discussed the importance of accessible and expansive biomonitoring for exposed communities and more broadly. In the case of the East Metro contaminated area, biomonitoring was available for some people in this community, but it is not available for all Minnesotans, leaving data gaps for those who have moved from the area and for other exposed communities. Johnson also highlighted the utility of testing to assess the efficacy of interventions over time and the ability of testing to illuminate links between exposure and understudied health effects.
Vicki Quint (Foam Exposure Committee)
Vicki Quint is a firefighter advocate through her work as a co-chair with the Foam Exposure Committee. Following a massive tire fire in Watertown, Wisconsin, and her husband’s death due to cancer, Quint learned about significant exposure to PFAS in the fire service. Firefighters are exposed to
PFAS through AFFF use and the use of PFAS-containing protective gear. Quint provided further details about PFAS in AFFF and current activities, highlighting the current availability of fluorine-free alternatives to AFFF. She noted that there are several sites in Wisconsin contaminated with PFAS as a result of the use or product of AFFF.
Quint followed this information about firefighter exposure and AFFF use by describing the plight of exposed firefighters seeking PFAS blood testing. Military firefighters are now eligible for PFAS blood testing, but retired military firefighters and civilians are not. Quint related concerns from the fire service community regarding the ramifications of blood testing results and options to lower PFAS levels in blood. Quint emphasized the need for all fire departments to discontinue use of all fluorine-containing AFFFs, as there are no regulations requiring municipal fire departments to use AFFF.
Art Schaap (fourth-generation dairy farmer)
Art Schaap described his experience as a dairy farmer in New Mexico whose farm and family were unknowingly subjected to severe PFAS contamination due to military AFFF use.
Schaap stated he has been on his farm for more than 30 years and considered investments in his farm as his version of a 401(k). When he was approached about PFAS water testing, Schaap stated he readily agreed without prior knowledge about PFAS. Those tests revealed levels of PFAS up to 30,000 ppt in drinking well water from his property. These findings led Schaap to contact the New Mexico Department of Agriculture asking for PFAS testing in milk. The department informed Schaap that if PFAS were found in his milk, Schaap would need to dump the load. He insisted on the testing despite that risk, stating he did not want to distribute products with PFAS to customers around the nation. Schaap stated that PFAS testing in milk from his cows subsequently revealed PFAS concentrations ranging between approximately 800 and 2,500 ppt; this testing has been ongoing for more than 2.5 years.
The contamination has resulted in the devastation of his livelihood, as the cows can only be minorly rehabilitated, pose an economic burden, and reflect a major investment that will be devastating to lose without any possible profit. Schaap has limited options available to get rid of the contaminated animals in any profitable way. Dairy, beef, and rendering industries do not want PFAS-contaminated animals. Schaap described his efforts to filter water for his cows, only to find that it takes years for cows to eliminate PFAS from their body (also described by John Kern, below). PFAS have also been found in the soil on Schaap’s farm, further exposing his herd beyond drinking water. This untenable situation has unfolded tragically for Schaap and has resulted in the stranding of at least 4,000 cows, the deaths of 1,200, and the dumping of 1,500 loads of milk.
Schaap enumerated a number of institutional failures that have left him with few resources to rectify his situation. He said that multiple government agencies continue to eschew responsibility for the situation and other PFAS exposure concerns, related to DoD pressure and the lack of actionable EPA standards. Schaap pointed out that if FDA provided standards for PFAS in food products, under the Comprehensive Environmental Response, Compensation, and Liability Act (Superfund), contamination on his farm would require action and remediation. He also mentioned the lack of discussion and accountability about this topic across the dairy industry at large.
Schaap concluded his remarks by recounting health effects he has observed over time in cattle, including decreased lactation, premature births, dwarf calves, reduced pregnancy rates, poor body condition, and increased mortality. He also described health concerns from his family, including high cholesterol, hypertension, kidney damage, kidney stones, diabetes concerns, and infertility.
John Kern (RuttenKern Policy Group)
John Kern offered comments to the committee from the perspective of a litigator and environmental advocate residing in New Mexico. Kern explained that in addition to concerns over drinking water, they also focus on PFAS exposure in the water relied on agriculture and a lack of
associated safety standards needed to protect the food chain. Kern’s testimony dovetailed with the testimony of the previous presenter, Art Schaap.
Kern framed his perspectives by providing information about Cannon Air Force Base near the city of Clovis. AFFF contamination at the military based resulted in groundwater contamination spreading 5–6 miles from the base. The region is home to multiple dairies and cheese plants. Water from this source is provided to livestock, which are then the source for milk, cheese, and meat. This water is also used to cultivate silage vegetation and other crops. PFAS-contaminated groundwater has resulted in PFAS contamination of regional livestock, leading to sundry economic and health questions and concerns unrelated to drinking water exposure.
Kern displayed data from a regional dairy with high levels of PFAS in groundwater; these data show a decrease in lactation in dairy cows over time. Kern also described increasing mortality and birth defects over time in cattle from the same farm. Additionally, Kern presented data about PFAS in milk, stating that the FDA cites 400 ppt as an acceptable level of PFAS in milk. Measurements in milk from the Highland Dairy Farm varied between approximately 900 and 4,600 ppt from November 2018 to August 2020; the data show that dairy milk slowly reflected reduced PFAS exposure. A shorter-term study conducted by the Food Safety Inspection Service showed increased variability and a faster rate of PFAS elimination in dairy milk from exposed cattle compared with data from a longer-term study conducted on the same farm. Kern pointed out these rates have serious implications regarding how quickly cattle are considered rehabilitated from PFAS exposure and allowed for market purchase or dairy use. The slow elimination rates in the longer-term study also pose severe economic ramifications for farmers, given the average lifespan of cattle is around 6 years.
Kern concluded his remarks by describing a frustrating current impasse with the DoD regarding standards. Federal legislation compelled the DoD to clean up agricultural waters in 2018, yet the DoD responded that they would take no action until a federal agency tasked with ensuring food safety (e.g., the FDA or the U.S. Department of Agriculture) set standards for PFAS in food products. Kern emphasized the need for agencies to set standards to allow effective action on PFAS at multiple scales.
Two other people at the Middle Town Hall provided public testimony, which is available on YouTube10:
WESTERN TOWN HALL
Liz Rosenbaum (Fountain Valley Clean Water Coalition)
Liz Rosenbaum provided testimony as an AFFF-exposed community member in El Paso County, Colorado. Rosenbaum described hearing about regional drinking water contamination in a group setting based on The New York Times reporting. Following the initial news of exposure, the community focused on learning about PFAS and government agencies that could assist in an appropriate response. The community response also entailed building partnerships with water districts and assuaging community anger toward these entities, who learned about the contamination at the same time as the community with no prior knowledge of the issue. Since 2018, Rosenbaum stated, the community has been focused on navigating the regulatory and legislative system to reap meaningful action as soon as possible, turning their anger into action through state legislation. This has involved building connections to EPA, state and county health departments, and elected officials at city and state levels. Rosenbaum reported that, as a result of these organizing efforts, legislation has been adopted increasing fines for polluting corporations.
10 See https://www.youtube.com/watch?v=mGeABDDTCuI&list=PLGTMA6Qkejfg1GIgAPeqkMCDncdx04qHN&index=16.
Beyond detailing the exposure reality for her community, Rosenbaum described priority groups that require increased attention in further PFAS studies. She stated that military families move frequently and may be exposed at multiple sites; care must be provided to military families, as well as service members, from all branches. Rosenbaum also suggested that service members require assistance from the U.S. Department of Veterans Affairs (VA) like that provided to Vietnam veterans. Rosenbaum also indicated the need for equity in exposure assessment and mitigation for Black, Brown, and Indigenous families, as well as rural families, mentioning that rural families in her county are not being offered drinking water at the same nondetect level offered to households in PFAS-exposed municipalities. Rosenbaum stated that a recent ATSDR community-level exposure assessment revealed that this clean municipal water facilitated a decrease in PFHxS11 levels in the blood of municipal residents.
Rosenbaum also pointed out the limited number of health care options in El Paso County, stating there are no hospitals in the southern half of the county. This lack of health care facilities exacerbates contamination issues because there is no capacity to monitor health outcomes, as families seek health care in the northern part of the county where doctors may not be able to identify localized health outcome patterns. Rosenbaum emphasized the immediate need for blood testing to establish a baseline that serves as evidence of contamination and an indicator of potential health effects. Rosenbaum concluded by emphasizing the need for continued patience and engagement between health care practitioners and researchers on this issue to find shared vocabulary. She explained that communities are living through frightening and unfamiliar exposures but may not have the appropriate technical vocabulary to describe their concerns or ailments.
“Half the battle for the community has involved learning how to ask the right questions to get what we need to have clean and safe communities for our working families.” Liz Rosenbaum
Martha Dina Argüello (Physicians for Social Responsibility)
Martha Dina Argüello provided perspectives as a Latina and an environmental advocate in California with experience connecting health care providers and communities. Argüello posited that guidance from the committee must include provisions for increased biomonitoring as many communities facing exposure are as yet unaware of the problem. She also discussed the distinct legacy of industrial contamination in Los Angeles. This history has resulted in community exposures to multiple pollutants, which means that approaches that focus on one chemical at a time do not address the lived reality of complex contamination. Argüello pointed out that these factors have led to distrust of water quality, particularly in the Latino community. She highlighted that Latino communities often pay more for water per capita than for fuel as a result of their reliance on bottled water. Comprehensive testing and proper health education for communities and practitioners is key to rebuild trust in water quality and address the comprehensive reality of complex environmental exposures.
Argüello also explained that communities often face the downplaying of anxieties and risks surrounding exposure; this reflects a lack of training that leads to an inability by clinicians to validate the lived experiences of exposed communities. This dynamic further compromises exposed communities. Argüello emphasized that it is essential for clinical guidance about PFAS exposure to include instruction about how to help concerned patients minimize exposure rather than brush off environmental health concerns.
Argüello cited the dynamics of PFAS regulation in California as an example illustrating how to avoid this paradigm of patient treatment. Argüello highlighted that helpful legislative efforts have been under way, yet early warning systems detecting PFAS in drinking water and through biomonitoring studies have not been appropriately heeded. She specifically flagged the response of a physician who is a member of the state legislature, who stated that exposure should not be quantified for patients as the worry is worse than the exposure. Argüello stated this exemplifies how physicians are trained to respond
to environmental health concerns, and yet this lack of training and understanding of exposure often leads to minimizing people’s experience with exposures.
Argüello also urged that clinical guidance should take an anticipatory approach to ensure health care practitioners are provided some education and literacy surrounding the PFAS issue and complex exposure scenarios: health care practitioners should be capable of some interpretation of water quality results and be able to comment on options for filtration. Argüello also specified that clinical guidance must provide intervention options accessible to different socioeconomic and cultural backgrounds. This stratification of intervention is critical to ensure appropriate guidance is provided for all types of exposed communities as many cannot “buy their way out of being exposed.” Argüello also highlighted tools that allow tailored exposure assessment and risk reduction strategies, citing how doctors are now writing prescriptions for new carpeting or other household materials to aid rental tenants in substandard housing. Argüello also touted the use of a geospatial tool that allows physicians to assess cumulative exposure risk based on patient location overlaid with information about multiple ambient environmental health exposures.
“When scientists fear speaking truth to power, we know that truth dies.”
“We need physicians to step forward because we have regulatory agencies that are actually not preventing exposure.”
“We can’t change this broken system without the partnership of science and physicians.” Martha Dina Argüello
Mark A. Favors (Fountain Valley Clean Water Coalition)
Mark A. Favors provided commentary as an Army veteran and community member from Colorado Springs, Colorado. Favors and his family learned of serious PFAS contamination affecting their region from activities at Peterson Air Force Base and other regional military bases, prompting Favors to assume an ardent advocacy role seeking safe water. Favors pointed out that while important state legislation regulating PFAS has been passed in Colorado (also discussed by Liz Rosenbaum, above), DoD is exempt from most state legislation. This exemption stands despite the fact the Air Force admitted to dumping AFFF into regional water resources three times per year for multiple decades.
Favors detailed that sustained contamination from AFFF exposure has led to high levels of PFHxS in the blood of people in the community: measured levels were the highest in the country except for individuals who directly manufactured the chemical. With this exposure in mind, Favors chronicled harrowing details about his family’s struggle with health problems. For example, there have been many cases of kidney disease and cancer in family members of many ages in the contaminated zone, some requiring kidney transplants that were further complicated by development of cancer in the donated kidney. Favors stated that the abundance of serious kidney ailments in his family in Colorado Springs is particularly striking considering that no family members who live outside the contamination zone have encountered these issues.
Favors explained that these health issues assumed urgent relevance for his family in 2016 when the Air Force disclosed dumping PFAS into drinking water sources, given the known links between PFOA and kidney issues found at other locations. Favors reported that DoD also revealed the detection of PFAS in some community drinking water sources at concentrations up to 8,000 ppt, well above the EPA’s health advisory limit of 70 ppt. Favors indicated that despite these levels, the state of Colorado has not provided expansive PFAS blood testing to all residents, even knowing the inherent value of blood testing as an indicator of exposure and potential health effects. Favors emphasized the particular importance of transparent information and access to testing when considering the transitory lifestyles of military members and other community residents. He pointed out that he did not find out about the contamination in his hometown until 2018 while visiting his mother in the region. Favors provided an additional
example of a cousin who previously lived in the contaminated zone and has since moved, only to find unexplained liver tumors in one of their young children years later.
Favors also stressed the need for transparency and education in the health care community and shared his experience as a health professional in endoscopy. He stated that despite evidence linking PFAS to irritable bowel disease, gastroenterologists in his department were unaware of PFAS. Favors highlighted that such transparency and access to exposure information is key for both practitioners and community members, especially for exposed children and their families who are concerned about developing health problems in the future.
“I have family members … buried at Fort Logan National Cemetery after surviving combat tours in Vietnam, Korea, and Afghanistan…. They’re now buried in the National Cemetery from cancer after the military admitted dumping this toxic chemical into their water.” Mark A. Favors
Andria Ventura (Clean Water Action)
Andria Ventura provided context about past and ongoing actions addressing PFAS in California from the vantage point of an environmental advocate. Ventura opened her remarks by describing her continued struggle engaging with the medical community about environmental health concerns as a longtime advocate, describing it as difficult for clinicians to make the connection between exposure and health outcomes. Ventura hypothesized that this stems from reluctance or avoidance by clinicians to assume an advocacy role. As a patient and a resident of a PFAS-affected city, she also stated she has never been asked about toxic exposure or environmental health background by her doctors or other medical caregivers, despite dealing with several chronic concerns over decades. She had to actively broach this topic with providers, likening this experience to the testimony of other presenters to the committee. However, it has been clear that doctors and nurses are not trained to take toxic exposure into consideration.
Ventura went on to provide abundant information about the PFAS problem overall. She highlighted the multifaceted ways humans can be exposed to PFAS, including through drinking water, surface waters, consumption of wildlife, or consumption of agricultural products exposed to PFAS in soil or water. She also reiterated the importance of considering PFAS as a class, stating thousands of PFAS have been identified and all are considered persistent, accumulative, mobile, and hazardous to some degree. Ventura also showed that multiple PFAAs have been linked to health effects that affect immunity, development and reproduction, fat and metabolism, liver function, endocrine function, and blood systems. She stressed the potential for additive and synergistic effects related to exposure to multiple PFAS, flagging this as a required point of awareness for health care practitioners. Ventura also emphasized that lack of research on novel PFAS should not hinder consideration of their health effects, stating that evidence is mounting that newer, short-chain PFAS have negative health effects. Ventura also stated that many novel PFAS degrade or transform into PFAAs.
Ventura went on to elaborate about specific actions and concerns in California, describing the recent position of the state to implement phased drinking water monitoring and site investigation. She added the caveat that this phased approach has failed to assess small water systems and private wells: this is a key data gap considering health care practitioners need detailed information about exposure to adequately consider environmental health concerns during care. Despite data collection limitations, data thus far indicate catastrophic PFAS contamination problems across the state that have so far not been addressed by sluggish regulatory efforts. Ventura also stressed key data gaps, such as uncertainties about PFAS levels in surface waters, PFAS in fish and wildlife consumed by humans, and implications for crops grown in PFAS-laden biosolids or irrigation water.
Ventura concluded her remarks by delineating key exposure assessment and health care needs in California. She emphasized the need for expanded understanding of the scope of the problem, including all PFAS in assessment efforts, as well as improved understanding about PFAS health effects. She suggested such fact-finding efforts should include expanded water monitoring; PFAS monitoring in
diverse environmental media; assessment of diverse exposure vectors; identification of those most at risk of harm from exposure; expanded health studies, including mixture exposure scenarios; and communication of health risks in culturally appropriate ways.
Linda Shosie (Mothers for Safe Air & Safe Water)
Linda Shosie provided perspective as a Latina and exposed community member in the South Side neighborhood of Tucson, Arizona. Shosie provided information to the committee collected as part of community-based exposure and health assessment efforts, highlighted egregious environmental justice issues, and explained her own path to advocacy. Shosie explained that her community is affected by PFAS contamination from military sites and airport activities, resulting in PFAS concentrations in drinking water up to 13,000 ppt. This high level of PFAS exposure is plaguing a majority-Latino community across a 3-mile contamination plume; Shosie provided a number of maps providing geospatial context about the extent of contamination. She described leading health assessments within the community, which revealed high rates of cancer and immune system disease around the Tucson International Airport and Morris Air Force Base. These community-derived results led the county health director to conduct a more in-depth epidemiological study in 2017. Shosie stated this study indicated “significant invasive cancer incidence rates” compared with people living in other areas around Tucson.
Shosie expressed frustration, sadness, and anger at the lack of action addressing PFAS contamination in her community and at other Superfund sites, saying, “environmental justice provisions continue to fail meanwhile thousands of contaminated sites remain unclean for more than 40 years.” She also stated that those sites that have been remediated are in White or upper-class neighborhoods, while sites like the one in her low-income community remain unresolved to the detriment of community health and trust in governing institutions. Shosie also shared emotional details about losing her daughter, prompting her own path to find answers about environmental health issues in her community.
“We cannot rely on state, CDC, and other local government officials who continue to turn their backs on the people who are affected.”
“Many people asked me why I got involved in the fight for … clean water, and demand government transparency and accountability. I got involved because I witnessed the death of my daughter out of this devastation I knew that I needed to find out why my daughter got so sick. Linda Shosie
Aaron Maruzzo (University of California, Berkeley, School of Public Health)
Aaron Maruzzo commented as a voice representing PFAS-contaminated communities in Western U.S. territories like Saipan in the Northern Mariana Islands. Maruzzo was born in Saipan and returned to work in the territory as a water quality analyst. Maruzzo framed the PFAS contamination problem in Saipan by leveraging data collected as part of the EPA’s Third Unregulated Contaminant Monitoring Rule program. These program data capture PFAS concentrations in select public water systems from around the United States. Maruzzo comparison revealed major contamination in Saipan, with an average concentration of 1,700 ppt in territory drinking water, well above EPA health advisory limits and the levels observed in other U.S. states and territories. The highest detectable concentration of PFOS was also found in Saipan. Maruzzo said these data have been hiding in plain sight for many years and illustrate an ongoing environmental injustice.
Maruzzo went further to explain that PFAS contamination across the small island is unevenly distributed, with the highest levels found in water resources adjacent to the only airport found on the island, home to firefighting training facilities that used AFFF. Sixteen villages along the south and southwest margins of the island were disproportionally exposed to PFAS from this drinking water source, including the village where Maruzzo grew up. The southern portion of the island tends to include more non-White, noncitizens who may be easily missed in health data collection efforts as a result of frequent
immigration and emigration. Health effects in this population may be also missed because of reluctance to seek medical care due to costs and accessibility. Despite these data collection challenges, preliminary reports suggest deep impacts on morbidity and mortality in the region, including heart disease, cancer, abnormal birth outcomes, hypertension, obesity, and cholesterol issues.
Maruzzo indicated that environmental justice issues are a key concern for his community, as “toxic exposures to hazardous chemicals continue to be disproportionately placed on communities of color and the poor working class.” Maruzzo also stressed the continued systemic exclusion of U.S. territories like Saipan from continued dialogue about issues like PFAS.
With all this context, Maruzzo explained that the community needs further information about PFAS exposure routes specific to a small island setting. He indicated the need for further information about PFAS in the water of neighboring islands in the Northern Mariana Islands and the levels in private water systems, bottled water, and wastewater. Maruzzo flagged information gaps surrounding AFFF, questioning when AFFF was first used on the island and the composition of AFFFs over time. Maruzzo also questioned how military testing, imperialism, and globalization affect the contamination crisis today. Additionally, Maruzzo pointed out a lack of information describing PFAS in many consumer products, such as textiles and food packaging. Maruzzo indicated data gaps surrounding PFAS in fish and highlighted this as a problem, considering the cultural and economic importance of fishing on the island.
Following discussion of the unique exposure scenario ongoing in Saipan, Maruzzo offered comments, recommendations, and questions for the committee to consider while drafting clinical guidance. He explained that monitoring in humans can help answer questions about the importance of all these exposure gaps, while establishing an important baseline perspective. Maruzzo also argued for the importance of biomonitoring for optimal health care, as it allows families to make informed health care and lifestyle choices while empowering individuals to take action in their communities and environments. Biomonitoring studies also help constrain health effects, even as the candidate list of health effects explicitly related to PFAS requires further study. Maruzzo suggested that despite many unknowns plaguing our understanding of health effects related to PFAS, biomonitoring should be prioritized as it enables a precautionary approach to allow identification of unknown PFAS and health effects. Maruzzo mentioned the highly persistent nature of PFAS, pointing out that it is unadvisable to allow highly persistent chemicals to remain in our body only to find out about health effects later. Maruzzo also said this characteristic should be emphasized to physicians to help them understand the complexity of PFAS given typically low awareness about the issue in health care settings and in communities.
Maruzzo echoed other participants by pointing out that highly exposed and vulnerable populations should be prioritized for PFAS blood testing, using equity as a guide to design testing protocols. He further suggested that inclusion in these categories should be constrained by occupation, location, and biosocial vulnerabilities. Maruzzo stressed the importance of considering who is in the 95th or 99th percentile of exposure, while questioning who is missing from the dataset, to maximize understanding of the issue while minimizing exposure harms. Maruzzo raised the issue that there is also a moral component to blood testing that must be considered by the committee, asking how physicians will be prepared to educate exposed community members who do not already know about issues related to PFAS exposure. He asked whether an established protocol, cost considerations, or health care access would drive such decisions. Maruzzo also discussed the need to develop guidelines describing how to care for transient populations like migrants and military personnel. He asked the committee to consider how testing programs and rigorous exposure assessment should account for high loss of follow-up and discontinuity of care for these populations. Maruzzo also highlighted the value of culturally appropriate guidance and communication, stating that general scripts about risk reduction are “useful for a broad audience but there should be a mechanism to specify what’s known into a local context.”
“If there’s one takeaway today, I think it’s important to consider the implications of what happens when you don’t listen to the voices at the margins.”
“The absence of evidence or the absence of consensus doesn’t mean a PFAS compound is safe.”
“One of the most PFAS-polluted places in the United States is a U.S. territory, and this is a serious environmental injustice.”
“Risk communication should prioritize not solely action but meaningful action which is guided through the lens of equity.” Aaron Maruzzo
Pamela Miller (Alaska Community Action on Toxics)
Pamela Miller spoke as a community member and environmental health advocate in Alaska. Miller provided abundant context about the unique exposure and community dynamics present in Alaska, while offering clear recommendations to the committee about Alaskan health needs and concerns. Miller explained that Alaska’s strategic military importance has resulted in the establishment of multiple military installations across Alaska that have used AFFF. Miller also explained that Alaska is a very aviation-dependent state, with AFFF-using airports situated directly adjacent to communities and their water resources. Miller stated that PFAS have been found in at least 100 different sites across 30 locations spanning the entirety of the state, with multiple communities exposed to unsafe amounts of numerous PFAS. A total of 11 current and former military installations are currently under investigation for PFAS contamination, with results to date indicating the environmental occurrence of PFAS above health advisory levels. Despite the abundance of known sites, and the likelihood of as-yet-unidentified sites, Miller explained that there is no cohesive state plan to measure PFAS in the environment, fish, and wildlife, or in people. Miller mentioned an overall failure of regulatory efforts to guide the state’s response to PFAS contamination, despite the support of attempted legislative efforts by associations of health care professionals, such as the Alaska Nurses Association. Only a handful of the 33 communities relying on water likely contaminated by AFFF or other PFAS sources have been able to access drinking water testing, contributing to widespread unawareness of the problem across the state.
Miller stated that limited assessment of drinking water and other environmental factors is matched by a lack of health assessments probing the effects of PFAS in exposed communities; only two health assessments have been conducted. One of these studies found positive correlations between the PFAS found in drinking water and those compounds found in serum, indicating an influence of drinking water contamination on human body burdens. Miller highlighted the particular plight of Alaskan remote regions as a hemispheric sink for persistent organic pollutants like PFAS. Remote polar regions receive undue burdens of mobile pollutants as a result of global distillation processes that transport pollutants to remote areas, including PFAS. Marine mammals and fish from polar regions therefore contain some of the highest burdens of persistent organic contaminants in the world because of these transport mechanisms and the bioaccumulative nature of PFAS. She shared the results of a community-based study in an Indigenous community on the island of Sivuqaq (St. Lawrence Island) in the Northern Bering Sea. This study tested the blood of community members reliant on traditional diets incorporating polar fish and marine mammals. The assessment found 13 PFAS in the blood of 85 people, as well as correlated concentrations of select PFAS to thyroid disruption.
Miller urged the need for biomonitoring in Alaskan communities with known or suspected PFAS contamination, including remote communities exposed through water sources, traditional foods, firefighting workers, and other exposed workers. Miller stated that human biomonitoring should be paired with assessments investigating exposure from water, dust, produce, fish, and wild game. These data are vital to inform health care providers and the wider community about exposures, possible associations with adverse health effects, appropriate risk reduction interventions, and relevant health care options. These data are also vital to inform policy.
Miller provided examples that emphasized the need to ensure that clinical guidance about PFAS is made accessible to diverse health care providers through various communication and training avenues. She explained that in Alaska health care needs are often addressed by community health aides as many communities lack doctors or nurses. Health aides in Alaska require the same clinical guidance and education afforded physicians, given their central role in meeting community health needs. Current, clear
synthesis of scientific information, as well as an ability to execute biomonitoring and medical monitoring, is needed for physicians, nurses, and community health aides to allow these health care providers to inform and protect their patients from PFAS. Miller suggested that provider education should occur through professional organizations, as well as continuing education credits offered through public health, medical, and community training programs tailored to different provider types, including the Indian Health Service and regional health care providers.
“PFAS are contaminating groundwater, surface waters, fish, wild game, garden produce, and people throughout Alaska.”
“The burden of proof should not be on our communities, and this must change so that laws reflect current scientific understanding and are protective of public health.”
“Health care professionals must be informed to become even more effective advocates for their patients and for ending nonessential uses of PFAS.” Pamela Miller
Randy Krause (Port of Seattle Fire Department)
Randy Krause, the port fire chief, provided commentary as a veteran firefighter and fire chief who previously used AFFF. Krause detailed his career as a firefighter, spanning experience with the DoD, private industry, and a public-serving fire department. Krause explained that fire training activities with the DoD involved regular training with military-grade AFFF or “mil-spec” foams. Training scenarios were enacted and AFFF was sprayed abundantly onto the training props and into the wider environment. Krause also related that, in 1985, these foams were used routinely to clean floors and wash trucks, and were thrown on other firefighters during training exercises.
When he moved to private industry, Krause found a similar approach to training, where an open pit was used to stage fire scenarios, and AFFF was thrown on training fires. Krause clarified that at the time firefighters were assured these mil-spec foams were safe, biodegradable, and did not pose a risk to the environment, which has seen been learned to be incorrect. Krause became fire chief at Seattle International Airport in 2010. While the department had at one time used a similar open pit training set-up with mil-spec foams for fire training activities, Krause indicated this approach was not in practice when he arrived. The department refrained from use of fluorine-containing AFFFs for training due to state bans.
Krause emphasized that the safety of his team is a top priority as fire chief and described an opportunity to contribute to the Firefighter Cancer Cohort Study. This study is a multicity, long-term national research effort focused on assessing cancer in firefighters across the nation. Participation in this study provided Krause and several other department members access to PFAS blood testing. Krause shared his blood testing data in graphical and chart format detailing concentrations of isomers of PFOA, isomers of PFOS, PFHxS,12 PFDeA,13 PFNA, PFUA,14 and Me-PFOSA-AcOH.15 His results varied in proximity to provided benchmarks, but showed levels of linear PFOS and PFHxS close to or surpassing the nationwide 95th percentile. Krause explained he does not know what these results mean at this time, but discussion with Dr. Jeff Burgess from the University of Arizona suggests high levels of PFOS and PFHxS are commonly elevated in other firefighters. Krause also highlighted that the reporting techniques used by the Firefighter Cancer Cohort Study were particularly helpful, providing his exposure data, average amounts in firefighters from his department, the 50th and 95th percentiles based on NHANES data, and the range of all amounts measured in the firefighters in his department.
12 Perfluorohexanesulfonic acid or perfluorohexane sulfonic acid, PFAS; see Chapter 1.
13 Perfluorodecanoic acid, a PFAS; see Chapter 1.
14 Perfluoroundecanoic acid, a PFAS; see Chapter 1.
15 2-N-methyl-perfluorooctane sulfonamido acetate, a PFAS; see Chapter 1.
Jean Mendoza (Friends of Toppenish Creek)
Jean Mendoza spoke as a community member from the Lower Yakima Valley in Washington. Mendoza stated her community and organization have concerns about PFAS because of the prolific application of PFAS-imbued biosolids in agricultural fields across the area. Washington state statutes require biosolid application to the fullest extent possible. This raises concern as the area is highly reliant on agricultural activities and is home to large dairy cow populations; no information has yet investigated crop and livestock safety in response to biosolid-driven PFAS exposure in this area.
Mendoza conveyed discontent and frustration about blatant disregard of environmental health concerns in her community. Mendoza cited efforts by state agencies to measure PFAS in some areas across the state, but noted that PFAS measurements in central Washington and across the Yakima watershed seem to be intentionally omitted. Mendoza also pointed out that Yakima County ranks poorly in the state with respect to health outcomes and health factors, reflecting poor environmental health in an area home to tribal communities and majority Latino populations. In light of these findings, Mendoza stated that the state seems to be blatantly neglecting the exposure of people of the Yakima Valley.
Mendoza listed community health issues, including asthma, myocardial infarction, and low birthweights, noting the region is home to multiple complex exposures including PFAS, air pollution, nitrates, and pesticides that are associated with a number of adverse health outcomes. Mendoza raised the point that it is challenging for Yakima Valley residents to attribute health effects to any one pollutant, given the cumulative exposure to so many pollutants in the region. Mendoza also stated that concern about social maladies often trumps concern about PFAS in the region, given limited awareness of the problem in the community and inaction on the issue by the Yakima Health District. Mendoza moreover detailed that some elected officials take an “ignorance is bliss” approach and opt to avoid investigating the regional PFAS problem to avoid taking action on the issue.
Mendoza enumerated several challenges observed in her community that should be considered by the committee when formulating clinical guidance about PFAS for her community and beyond. She noted that many patients do not understand public health and risk assessment, and clinicians in the area receive no support from local health districts about PFAS. She also highlighted that many of the most exposed are poor households that live paycheck to paycheck, with limited capacity to worry or plan for long-term illness. She also cited the intangible nature of the PFAS problem, with no ability for folks to see, taste, or smell the issue. Mendoza offered recommendations as well, asking the committee to consider educating and informing clinicians about PFAS and other environmental health risks through professional organizations, to support biomonitoring studies, to recommend PFAS testing in fish, and to encourage a moratorium on biosolid application.
“We pay lip service to scientific evidence over here, but very often in Yakima Valley science is suppressed.” Jean Mendoza
Rebecca Patterson (Vietnam Veterans of America)
Rebecca Patterson presented commentary as a Navy veteran and veteran advocate, highlighting the importance of PFAS blood testing for veteran’s health care. Patterson explained that one of the largest sources of PFAS exposure for service members and military communities is the use of AFFF. These firefighting products have been used since 1970 to fight petroleum fires; legacy AFFFs contain PFAAs like PFOS and PFOA. While these are no longer in service, the DoD continues to use AFFF formulations containing PFAS despite the availability of fluorine-free alternatives. Patterson pointed out that use of these firefighting foams readily introduced PFAS into the environment and the water cycle and has led to widespread environmental contamination now documented at hundreds of military bases around the United States.
Patterson stated that her presentation was intended to educate the committee regarding how blood testing could help PFAS-exposed veterans gain access to VA health care. To accomplish this, Patterson
shared information about the Veterans Health Administration (VHA). The VHA is tasked with providing care to eligible veterans, though not all veterans access health care through the VHA. This means community health care practitioners may be serving veterans without knowledge of their service history and related exposure; this necessitates that health care providers ask patients about their service history. Patterson also explained that after basic eligibility criteria are met, service members qualify for VHA care based on several factors, including service-connected disability, income, and exposure to toxicants and environmental hazards.
Service-connected disability is of particular importance to the veteran community; this designation typically requires specific evidence substantiating the connection between the given disease or injury and military service. Since medical concerns can arise years after service, it can be difficult for a veteran to connect an ailment to military service or exposure incurred through service. Disability approval results in tiered compensation and priority access to VHA care. With this context, Patterson concluded that access to health care and disability compensation can have a tremendous impact on a veteran’s quality of life. PFAS blood testing can provide evidence of exposure that enables veterans to access vital health care. Patterson also asserted that PFAS blood testing can lead to more informed health care, allowing service members and veterans to screen for and potentially prevent health conditions specifically associated with PFAS exposure.
Bucky Bailey (son of former DuPont Washington Works plant employee)
William “Bucky” Bailey III provided perspective as a community member from Parkersburg, West Virginia. Bailey was born with multiple birth defects, including only one nostril, a keyhole eyelid, a serrated eyelid, and breathing difficulties. The family had no idea what caused the defects, given the lack of similar issues in Bailey’s siblings. However, Bailey’s mother worked as a full-time employee at the DuPont Washington Works plant in Parkersburg, where she controlled the production of PFOA in a confined area. Upon returning to work from maternity leave, Bailey’s mother found that other pregnant women were removed from the Teflon production process. She also discovered that studies had been previously conducted by 3M that showed the same birth defects in laboratory animals exposed to PFAS. Despite these lines of evidence, DuPont denied that Bailey’s birth defects were a result of his mother’s occupational exposure, and the Bailey family found litigation impossible to pursue given DuPont’s stature in the community.
Years later, Bailey met Rob Bilott, the lawyer who uncovered DuPont’s malfeasance and pursued settlements for exposed residents of Parkersburg. Bailey described feeling relief finding out about links between PFOA exposure and health effects, following years of surgeries and underlying uncertainty regarding the cause of his deformities. Yet Bailey explained that joy following these revelations was also met with disheartenment and discouragement, knowing that the contamination that likely caused his deformities was entirely out of his control and had caused other health problems and untimely deaths in his family and wider community.
Bailey indicated that the C-8 Health Project did not find concrete links between his specific deformities and PFOA exposure, despite admission by DuPont scientists that the compound can cause birth defects. Bailey was also told his children would have a 50 percent chance of inheriting his health issues, which Bailey described as a tough and deeply troubling finding considering his marriage and his love of children. Bailey stated he struggled deeply with the decision to have kids, not wishing to put his children through what he went through as a child. Bailey and his wife ultimately decided to have children after wrestling with the question for over 10 years, and he reported he is the happy father to a healthy son and daughter. Bailey pointed out that knowledge of his contamination and related health risks delayed their family’s decision to have children, which ultimately occurred after his father passed away. This timing deprived his children a relationship with their grandfather and deprived Bailey’s father the opportunity to meet his grandkids. Bailey stated that his concerns now center on potential health effects like kidney and testicular cancer that he may encounter in the future given his significant PFOA contamination.
“It was joy for me to learn some of the things the scientific study found out.”
“I hope we can all acknowledge that we need to move in the same direction at the same time and not point fingers and not fight and not quarrel but find out what we can do to stop this from happening because it is going to cost us our lives.” Bucky Bailey
One other person at the Western Town Hall provided public testimony, which is available on YouTube16: Gina Solomon.
16 See https://www.youtube.com/watch?v=WghqL6urt6w&list=PLGTMA6QkejfjVRybfjFf-vRkIQnEhOb0a&index=22.