Suggestions for Improvement
In recognition of the aforementioned concerns, we recommend the Committee suggest all future guidance conforms to the following guiding principles and standards:
Providing clear distinctions between patients with background levels of exposure and those from contaminated communities recognizing that ATSDR has high exposure communities as central to its founding mission.
Distinguishing between levels of evidence for outcomes. Levels of understanding should be clear, from the near certainty of lipid and immune disruption to outcomes that are “above equipoise” as described by Dr. Samet in his presentation to the Committee. This could include kidney disease, kidney cancer, and testicular cancer (as illustrative examples and not a complete listing).
Treating the existence of doubt honestly instead of treating the existence of any doubt as an endorsement of all doubt. The concept of absolute certainty is not central to population science and environmental health nor is it required to inform medical practice.
Advising on proactive steps instead of focusing on fatalistic negative advice and post-hoc discussions of causation. Patients visit their doctors seeking advice and empowerment with steps that they may undertake to improve their health. Discussions of post hoc causation belong in legal guidance and specialized occupational and environmental health clinics.
Advising in a way that emphasizes useful interventions that can be undertaken at both the individual and community level. We are concerned that unscientifically negative messages affect many readers, including water managers. While it may be very difficult to obtain a PFAS serum concentration individually—it may not be as difficult in many communities. We believe future guidance should view the presence of comorbid conditions that also increase risk as opportunities for teachable moments in clinical care rather than monolithic reasons not to think about PFAS.
Adhering to principles of patient-centered care including respect for the patient’s values, preferences, and expressed needs. Our patients thrive when actively engaged in personal decisions like pursuing PFAS testing instead of adversarially being told they cannot be tested.
L. Kyle Horton, MD, MBA — Internal Medicine Physician — Wilmington, NC
Bronwyn Baz, MD, FAAP — Physician in Charge, Pediatric Hospital Medicine — Portland, OR
Laura Nelsen, MD — Staff Pathologist — Augusta, ME
Jacquelyn White, PhD — Retired Psychologist — Wilmington, NC
Martina Nicholson, MD — Retired Obstetrics and Gynecology — Santa Cruz, CA
Marla Barthen, RN, BCPA — Community Nurse and Advocate — Wilmington, NC
Sigrid Larson, MD — Family Medicine Physician — Philadelphia, PA
Kevin Cannon, MD — Hospitalist — Wilmington, NC
Elizabeth Griffin, MD — Pediatrician, Fmr Pres. of the Medical Staff & Trustee at NHRMC — Wilmington, NC
Adam Markesino, PharmD — Pharmacist — Wilmington, NC
Susan Allison-Dean, RN, MS, BC-AHN, CCAP — CEO — Cary, NC
Laurene Allen, LICSW — Clinical Social Worker — Merrimack, NH
Al Brookins, RN, BSN CQA — Clinical Researcher — Wilmington, NC
Tina Beaudoin, ND — Naturopathic Doctor — Manchester, NH
Angie Wodrazka, MSN, RN-BC — Clinical Nurse Educator — Leland, NC
Margaret Merrill, MSN, RN, CDCES — Diabetes Nurse Educator — Hastings, MI
Jeannie Lennon, LCSW — Retired Family Therapist — Wilmington, NC
Candace Luther, RDH — Registered Dental Hygienist — Sarasota, FL
Janet Jonas, CNMT, NCT, RT(R)(N) — Ret .Nuclear Medicine Technologist — Sunset Beach, NC
Kathleen Lawrence, MPH — Cancer Research Coordinator — Ann Arbor, MI
Deborah S. Todd, MT ASCP — Retired — Leland, NC
Amy Straiko-Howerton, MD — Family Medicine Physician — Clinton, NC
Kristin Andrs, NP — CEO — Petersburg, VA
Becky Johnson Himes, RN, MSN, DNP — Assistant Professor — Luther, MI
Patrick Sayre, MD, MPH — Assistant Professor — Philadelphia, PA
Nicole LePera, PhD — Holistic Psychologist — Scottsdale, AR
Maria Syl de la Cruz, MD — Family Medicine Physician — Philadelphia, PA
Rhonda Conner-Warren, PhD, RN, CPNP-PC — Asst. Professor Health Programs, Health Ecology Fellow — Canton, MI
Michael Ramirez, MD — Medical Oncology — Philadelphia, PA
Katherine Sherif, MD — Professor of Medicine — Philadelphia, PA
Jane Rapinchuk, MD — Psychiatrist — Zionsville, IN
Laura Devlin, LPN ---- Staff Nurse ---- Edgewater, FL
Rachel Criswell, MD, MS, IBCLC --- Family Physician, Environmental Epidemiologist --- Skowhegan, ME
Alan Woolf, MD, MPH — Pediatrician, Boston Children’s Hospital — Boston, MA
Maya Maxim, MD, PhD — Pediatric Hospitalist — Honolulu, HI
Kristi Simms, MD — Hospitalist — Wilmington, NC
Tara James, MD — Physician — Spokane, WA
Jessica Cannon, MD — Retired OB/GYN — Wilmington, NC
Kelly Forb, MD — Internal Medicine Physician — Charlotte, NC
L. W. Robinson — Retired Professor Emerita — Wilmington, NC
Vandna Milligan, MD — Clinical Instructor — Seattle, WA
Catherine Grosshaeuser, CNMT — NM Charge Tech — Stedman, NC
Cassandra Bishop, LPC — Licensed Mental Health Counselor — Leland, NC
J. Barbara Bakowycz, RN, BSN — Former Critical Care and Home Health Nurse — Wilmington, NC
Madeline Mehall, MPH — Care Manager Assistant — Detroit, MI
Beth Markesino, Phlebotomist — Phlebotomy Technician — Wilmington, NC
Lorena Bonilla, MD — Internal Medicine Physician — Miami, FL
Lekeshia Jarrett, MD — Family Medicine Physician — Wilmington, NC
David Kammer, MD — Attending Physician — Raleigh, NC
Laura Throckmorton, RN — Retired Nurse — Holden Beach, NC
Marcia Bosch, RN — Retired Nurse — Wilmington, NC
Audrey Schenewerk, ND — Naturopathic Doctor — Kansas City, MO
Debra Carter, RN — Home Health Administrator — Winnabow, NC
Mara Herman, MPH — Health Policy Specialist — Ferndale, MI
Olivia Marshburn, Nurse Midwife —Private Practitioner — Hampstead, NC
Joyce File, RN — Retired Nurse — Leland, NC
Kimberly Bracey, RN, BSN — Community Health Nurse — Waterford, MI
Sharon Dinse, RN, BSN, MS Ed. — Retired — Ann Arbor, MI
Andrea Amico, MS, OTR/L — Occupational Therapist — Portsmouth, NH
Mary Toporcer, MD — Dermatologist — Doylestown, PA
Megan Bartlett, LPC — Outpatient Mental Health Counselor — Drexel Hill, PA
Elaine G. Chottiner, MD — Retired Hematology Oncology Physician, Ecology Health Center Health Leaders Fellow — Ann Arbor, MI
Elizabeth Friedman, MD, MPH — Environmental Physician — Kansas City, MO
Ann Hunter, RN --- Registered Nurse --- Melbourne, FL
Annamarie Pond, DO --Family Physician -- Sweden
Per- and Polyfluoroalkyl Substances (PFAS) are “forever chemicals” that have contaminated air, land, and water for decades. Growing awareness of PFAS drinking water contamination has prompted some communities to advocate for and to obtain PFAS blood testing. In much of the country though, PFAS blood testing has not been widely used or easily accessible—even in highly exposed communities. Furthermore, the impacts of prolonged exposure to PFAS on health have failed to be addressed with specific actions or recommendations—thus many health professionals remain in the dark about how to appropriately care for those exposed.
Are you concerned about protecting our patients and communities from the adverse health effects of PFAS exposure? Please Sign Below!
Health professionals’ letter to the ad hoc National Academies Committee on Guidance on PFAS Testing and Health Outcomes.
We are health professionals writing in support of the work of the National Academies of Science, Engineering, and Medicine ad hoc committee on Guidance on Per- and Polyfluoroalkyl Substances (PFAS) Testing and Health Outcomes (the “Committee”), which has been charged with providing an authoritative and objective review of the current evidence for health effects of PFAS exposure. Our goal is to highlight perspectives from practicing and retired clinicians and public health practitioners—many who have practiced in communities contaminated with above-background exposures to PFAS. Other signatories have worked with occupationally exposed populations including veterans and firefighters.
Many of us have experienced the trauma of knowing the sanctity of our bodies was violated without our consent as we were personally and unknowingly exposed to PFAS. Still more of us, in our roles as health professionals, have experienced further trauma as we face the harms being caused by incomplete and dismissive PFAS clinical guidance that fundamentally undermines our ability to provide the kind of quality care we otherwise are capable of providing.
In writing, we hope the Committee can help us to care for patients and to heal in affected communities with what amounts to useful and affirmative clinical guidance that is worthy of our professional oaths: to “do no harm,” “to watch over life and health,” and to “obtain new light” that many of us live by. We seek scientific applications of these principles in regard to rapidly advancing PFAS evidence. Our patients, their families, and we providers hope for and deserve accurate and open communications that reflect the current best available science.
Concerns with Existing PFAS Clinical Guidance
We are deeply concerned that existing clinical guidance from the Agency for Toxic Substances and Disease Registry (ATSDR)/Centers for Disease Control and Prevention (CDC) may inadvertently and unintentionally mislead. We are keenly aware of the impact this has on busy clinicians who have neither the time nor experience to extensively delve into primary sources on a concern as complex as health effects from PFAS exposure. Frankly, many healthcare professionals have very limited toxicology training. And for many experienced and elder clinicians, PFAS were not a known or relevant contaminant of concern when they trained.
We are also concerned that the guidance does not seem to be trauma-informed. Productive clinical interactions should reflect mutual understanding with adherence to principles of patient-centered care. But by being innately dismissive, including of the potential role of serum PFAS testing, it fosters mistrust and provides cover for both polluters and insurance companies to continue to evade responsibility or assume costs for testing—this fundamentally undermines the important role testing could play in clinical care provision for those exposed to PFAS.
Being mindful of health inequities and issues of environmental justice, there are several key inadequacies in addressing uniquely under-resourced practice settings and high-risk populations of concern for PFAS exposure. We already know that certain rural communities and racial and ethnic minorities are disproportionately impacted. Despite this, guidance takes a one-size-fits-all approach, and in so doing, it fails to provide culturally competent and sensitive science communications. Furthermore, there is seemingly little effort to recognize social determinants of health and how they may impact clinical care and recommendations. We find omissions or inadequacies in guidance for the following:
Racial/ethnic groups carrying higher burdens of PFAS exposure
Highly vulnerable populations like breastfeeding mothers, newborns, infants, the medically fragile, and immunocompromised
Occupations with higher risks for PFAS exposures including firefighters, textile workers, food service employees and industrial workers manufacturing PFAS-containing products
High poverty areas and advice for those who lack the ability to install water filtration which may be related to financial, infrastructure, or even housing limitations
Medically underserved areas which may also have under-resourced public health departments
In our view, the existence of disparities in burdens from PFAS exposure makes it crucial that guidance empowers us to communicate effectively with ALL our patients in a non-judgmental way. We do our best to meet diverse needs in populations with different health literacy and motivation levels for change. We need a framework for understanding instead of a needlessly paternalistic and one-size-fits-all approach, which can undermine the delicate trust that comes with shared clinical decision-making.
We advise the following actions be undertaken by CDC/ATSDR and recommended by the National Academies. Although some are beyond the original Committee scope, we suggest:
Developing an integrative mapping tool to assist clinicians in identifying contaminants of concern in their area. This could be adapted into the CDC Environmental Public Health Tracking Network.
Goals: more informed testing and better patient care.
Creating a PFAS-related health concern reporting database. This could be akin to the VAERS where clinicians and community members can report cases and conditions of concern.
Goals: to enable earlier identification of trends, case clusters, and better inform both patient care and research.
Offering updated and ongoing PFAS-related Continuing Medical Education linked on the CDC and ATSDR websites. We suggest that this may be contracted to a 3rd party for timeliness, experience, and expertise.
Goals: to reinforce the importance of PFAS and to give busy clinicians credit for the time and effort put into understanding this complex issue.
Providing reviews of the medical evidence on a set public calendar and with ongoing clinician engagement.
Goals: to keep clinicians better informed with the latest evidence and also to create more effective collaboration to meet our needs.
Providing a link and downloadable form for patient intake to guide the collection of an adequate environmental exposure history in a PFAS contaminated community. Current templates emphasize occupational exposures, which is not the only need.
Goals: to fill gaps in our education and also make history-taking much more time-efficient for busy clinicians.
Providing guidance for requesting PFAS blood testing and recommendations for additional screening tests, proactive behavioral interventions, lifestyle changes, and treatment plan alterations that may be undertaken. This must be inclusive of conditions for which probable links to exposure are strong and reflect emerging evidence of health effects from PFAS exposure.
Goals: to improve the quality of care and adherence to evidence-based practice.
Assisting clinicians in the identification of higher-risk clinical circumstances for PFAS exposure which should include guidance to recognize particularly concerning or common contaminant mixtures with PFAS, occupation-related concerns, and highly vulnerable patient populations.
Goal: to improve the quality of care across the array of higher risk exposure circumstances.
Offering enhanced guidance for the care of vulnerable patient populations that may merit special consideration for testing or risk mitigation efforts.
Goal: to properly care for those whose risk is extremely high already for complications of ongoing PFAS exposure.
Providing a framework for addressing some highly-relevant and emerging concerns from PFAS exposure that are likely to be of concern to exposed individuals, including placental transfer, crossing the blood-brain barrier, PFAS presence in breast milk, and potential impacts of immune effects from PFAS on vaccine response.
Goals: to better foster trust and to build a foundation for clinician conversations that are sensitive and responsive to patients’ fears and needs.
Creating a dynamic PFAS toolkit that would fill the basic needs of a poorly resourced, small public health department facing PFAS contamination. Recently, this was done when ATSDR moved from a PDF guide on stress and resiliency to a PFAS Community Stress Resource Center.
Goals: to be more up-to-date, reduce potential disparities, improve science communication, and facilitate evidence-based care.
Forwarding the Committee’s Charge
We would like to draw the Committee’s attention to real-world clinical examples compiled to explain how improved clinical guidance would relevantly change our routine clinical practice, which is detailed in Addendum 1. In Addendum 2, we also provide perspective on what we find to be a problematic clinical guidance letter provided on the state level. We believe it to be misleading as a direct result of the inadequate federal guidance and highlight how it illustrates many of the aforementioned concerns.
As clinicians and advocates, we support the recommendations provided by Community Liaisons in a letter to this Committee. We share their belief that blood testing for PFAS should be a part of routine preventive health care in communities with known sources of PFAS contamination. And in our view, reviews of the epidemiological evidence are sufficient to link many immune, lipid, and liver-related outcomes to PFAS exposure. As such, we agree with the Community Liaisons assertion that there is sufficient scientific evidence to acknowledge that specific health risks have been linked to PFAS exposure. We further agree that costs of PFAS blood testing should be covered by the polluter and/or the patient’s insurance (as is legally mandated in New Hampshire).
In closure, here are PFAS clinical guidance examples that we find closer to ideal as they exhibit a clear intent to help across the spectrum of exposures and clinical circumstances:
The Association of State and Territorial Health Officials provides a suite of linked health communication documents for patients and providers. These list adverse health effects, and treat exposure as a teachable moment for evidence-based interventions.
The Silent Spring Institute, with a consortium of partners, addresses exposure reduction at the individual and community level, as well as shared patient-clinician decision-making based on evidence. The site also lists common, nonexotic laboratory tests that clinicians understand (but do not invariably order) that address specific outcomes related to PFAS exposure.
We hope that the Committee’s work will result in clinical guidance that better respects the dynamic and rapidly growing knowledge base around the health effects of PFAS. We are counting on you and are extraordinarily grateful for the time and effort you are putting into helping us honor our professional oaths and responsibilities to our patients and communities.
To view the updated versions of the 2 Addenda or if you have questions, contact:
Dr. Kyle Horton
Review the current ATSDR/CDC PFAS Clinical Guidance which was updated in late 2019.