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Partnering with Legislative Staff to Improve Long COVID Outcomes Partner with Legislators to Improve Long COVID Outcomes Amelia Poulin and Sidnie Christian Learn how health departments can secure legislative understanding and support for Long COVID recovery efforts. Long COVID challenges public health systems, impacting individuals’ health, workforce participation, and community well-being. State and territorial health departments are leading efforts to track, understand, and mitigate the health and economic effects through surveillance, education, and coordinated care initiatives.  To maintain and expand these efforts, health department programs can secure legislative understanding and support. This requires cultivating longstanding, trust-based relationships with legislators and their staff. Strategic engagement helps legislators view health departments as indispensable partners in addressing complex public health issues with broad social and economic implications. Build Longstanding Relationships with Legislative Staff Legislative staff are often the most consistent points of contact in a lawmaker’s office and play a central role in shaping policy advice. Regular engagement strengthens trust and visibility, helps maintain productive relationships, and ensures consistent communication with legislative offices. Health agencies can achieve this by: Engaging early and often: Identify key legislative staff for health department programs to brief on emerging Long COVID data, evolving needs, and program outcomes throughout the year. These conversations provide context and set the stage for trust before policy requests. Over time, they can lead to invitations for health department representatives to provide expert input. Positioning the program as a trusted, nonpartisan source: Health department leaders can provide timely, objective information about Long COVID’s impact on local hospitals, schools, and employers. Demonstrating responsiveness: Following up on constituent inquiries related to Long COVID testing or benefits shows legislators that the health department is directly addressing concerns in their districts.   Program staff can play a key role by developing briefing materials, success stories, and district-level data to share internally with leadership or policy offices for dissemination to legislators.   Note: Health department staff should align engagement with internal communication protocols. They may centralize outreach through a legislative or government affairs office that coordinates messaging and ensures compliance with statutes and lobbying restrictions. Identify Objectives and Tailoring Asks Before reaching out to legislative staff, health department leaders should clearly define their goals (e.g., funding for post-COVID clinics, data infrastructure, or research partnerships). When health departments align requests with legislative priorities, those proposals may seem more feasible or be more likely to gain support. Keys to doing so include: Understanding legislator priorities: Review voting history, public statements, and committee membership (e.g., health, workforce, budget). Identify shared interests such as workforce participation, economic productivity, or small business resilience. Choosing the right messenger: Personal narratives from constituents affected by Long COVID related to the sub-issue (e.g., a small business owner struggling to return to work, a teacher navigating disability benefits, or a parent managing caregiving responsibilities) can be effective. Consider pairing stories with district-specific data to illustrate scope. State health departments can also amplify impact by working with local health jurisdictions to paint a larger picture of how Long COVID impacts communities in the region. For example, drawing connections between workforce impacts across multiple counties can demonstrate to legislators that Long COVID affects the state’s overall economic resilience, not just isolated communities. This approach can help legislative staff see statewide trends and understand how targeted investments could yield system-wide benefits. Crafting the message: Use plain, non-technical language to describe Long COVID (e.g., “lingering symptoms after COVID infection” rather than “post-acute sequelae”). Consider emphasizing economic impacts (e.g., missed work or school days, productivity losses, and long-term disability claims) and framing the health department as a problem solver that helps businesses/families recover and navigate challenges, rather than a requester for resources. Communicate Effectively Legislators are often time constrained. Clear, concise, and locally relevant messages are most effective. To build an effective ask of a legislator’s office, health department staff can: Use their language: Translate public health concepts into legislative priorities (e.g., “economic competitiveness,” “community stability,” “health care access”). Incorporate local data: Share district-level statistics on Long COVID cases or workforce absences, as data allows (e.g., “in your district, an estimated 5,000 workers have missed more than two weeks of work due to Long COVID”). Combine data with moral resonance: Pair values-based appeals (e.g., “every resident and their family deserve the chance to live and work at their full potential”) with supporting evidence (“yet one in four adults in this district continue to experience symptoms six months after infection, limiting their ability to contribute to the workforce and community”). Leave behind resources: Provide one-page infographics or briefing sheets summarizing data and program activities. Follow up to reinforce conversations with updates, success stories, and progress metrics. Anticipate Policy Dynamics and Counterarguments Legislative discussions may surface alternative policy ideas or misconceptions about Long COVID and health agency program roles. Consider preparing for opportunities to: Answer questions: Public health leaders should be prepared to clearly explain the department’s legal authority, the evidence base for Long COVID programs, and the partnerships that support implementation. Consider explaining how scientific research, emerging epidemiologic data, and best practices inform Long Covid programs and how partnerships with hospitals, clinics, and community organizations help ensure effective service delivery. Clear, concise explanations help legislators understand the health department’s scope and role, build credibility, and preempt misconceptions that could undermine support for program priorities. Acknowledge unintended consequences: Demonstrate awareness of policy trade-offs and propose pragmatic solutions. For example: A proposal to expand Long COVID benefits might raise concerns about budget constraints. Health department leaders could suggest phased implementation or pilot programs in high burden areas. Understand alternatives: Be prepared to discuss other proposed interventions and show how the health department’s approach complements them. For example: If a legislator suggests employer-led sick leave policies as the primary solution to Long COVID, the health department could explain that monitoring Long COVID prevalence and providing patient support can help ensure workers’ safe return to their jobs, complementing workplace policies. Leverage rulemaking: When statutory change is limited, use administrative rulemaking and public comment to align implementation with public health intent.   Conclusion Building lasting, credible relationships with legislative staff allows health departments to move from reactive engagement to a proactive strategy. By pairing constituent stories with district-specific data, aligning messages with economic and moral values, and maintaining year-round communication, public health leaders can secure sustained support for Long COVID initiatives. These strategies not only advance Long COVID priorities but also strengthen the overall policy capacity and visibility of public health agencies, positioning them as trusted, solutions-oriented partners in state governance.   article yes

This workbook is a practical tool for designing Long COVID programs and policies tailored to each jurisdiction’s needs and built to create lasting impact.

Long COVID Resource Guide: Tools Plus Insights from State and Territorial Initiatives Discover Long COVID resources, tools, and support networks for individuals, health care providers, and public health professionals. This resource offers key Long COVID resources, tools, and support networks for individuals, health care providers, and public health professionals. It encompasses essential resources and examples of successful state-led initiatives that illustrate best practices in community engagement and awareness. What Is Long COVID? Long COVID is defined as a chronic condition that occurs after SARS-CoV-2 infection and lasts for at least three months. It includes a wide range of symptoms or conditions that may improve, worsen, or be ongoing. Who Is Affected? Its lasting symptoms can impact physical and mental health, restrict work and caregiving, and create ongoing challenges for families and health care providers. Federal Resources These tools provide current clinical guidelines and useful information for health care professionals and the public: Long COVID Basics by CDC Healthcare Appointment Checklist for Long COVID by CDC Guidance on “Long COVID” as a Disability Under the ADA, Section 504, and Section 1557 by HHS Resources for People with Long COVID by Administration for Community Living Health Care Provider Resources Health care providers play a crucial role in identifying, managing, and supporting patients with Long COVID. These resources support care coordination, patient advocacy, and disability protections related to Long COVID: Clinical Guidance: Long COVID Point of Care Resource by American Academy of Family Physicians Advocacy and Resource Access for the Care of Patients with Long COVID by American Academy of Family Physicians Practical Guidance for Medical Professionals by Job Accommodation Network AAPM&R Multi-Disciplinary PASC Collaborative Free CME: Updates in Long-COVID Conditions by American Academy of Family Physicians Long-COVID Webinars: Institute for Learning, Education and Development by U.S. Department of Veterans Affairs RECOVER Research Review (R3) Seminar Series by NIH Long COVID and Fatiguing Illness Recovery Program ECHO by The University of New Mexico Schmidt Initiative for Long Covid Long COVID Resource Repository by Council of Medical Specialty Societies Resources for Individuals, Caregivers, and Advocates These resources are designed to support individuals living with Long COVID and the caregivers and advocates who stand beside them: Long COVID: What You Need to Know by AAFP Long COVID and Behavioral Health Communication Toolkit by SAMHSA AHRQ Efforts To Address Long COVID by Agency for Healthcare Research and Quality RECOVER: Researching COVID to Enhance Recovery by NIH RECOVER-TLC Will Advance Long COVID Research by Foundation for the National Institutes of Health Directory of Long COVID Clinics by Long COVID Alliance Long COVID Kids Long COVID Alliance Resources A Misunderstood Disabling Chronic Illness: How You Can Support Loved Ones Living with Long COVID by the University of Colorado School of Medicine Infection-Associated Chronic Conditions Initiative Patient-Led Research Collaborative Long COVID Essentials by Long COVID Justice article yes

Strategies and Innovations to Address Long COVID Strategies to Address Long COVID Alyssa Boyea Learn innovative strategies to address Long COVID, with examples from the field. Long COVID, or post-COVID condition, is a chronic condition that occurs after SARS-CoV-2 infection and afflicts approximately 20 million people in the United States. It is a multifaceted disease with symptoms or health problems lasting for at least three months as a continuous, relapsing, remitting, or progressive disease state affecting one or more organ systems. In 2024, the National Academies of Sciences, Engineering, and Medicine released a report defining Long COVID to harmonize terminology and measurement approaches. Long COVID has far-reaching implications beyond individual health, affecting health care systems and broader societal structures. Global economic impact of Long COVID is estimated to be approximately $1 trillion per year, including medical costs, productivity losses, and other compounding effects. Ongoing prevention efforts for Long COVID rely upon vaccination and primary prevention strategies for COVID-19 infection. The lasting impact of Long COVID requires unique health policy approaches, sustained research funding, and coordinated health and public health action to support affected individuals and mitigate long-term societal costs.  Key Challenges Diagnostics: There is no laboratory test for diagnosis nor standardized clinical diagnostic test. As a result, clinical clarity in diagnosis remains challenging. Reduced testing for acute COVID-19 infection has also hindered diagnosis and public health disease surveillance of Long COVID. Engagement: COVID-19 pandemic fatigue and reduction in trust can make it challenging to establish a trusted public health response to support impacted communities. Information is constantly evolving as more is learned about the condition, which can lead to confusion and misinformation. There is also little real-time data on community needs related to Long COVID to help tailor messaging or provide effective education. Funding: Many jurisdictions do not have dedicated Long COVID funding and are grappling with cuts to federal and state funding for Long COVID. Without sustained funding, it is challenging to retain dedicated staff — increasing reliance on part-time personnel — and continue initiatives. Jurisdiction Highlights: Advancing Long COVID Efforts Colorado In 2022, the Colorado General Assembly passed HB22-1401, directing the Office of Saving People Money on Health Care (OSPMHC) to examine and make policy recommendations that address the impacts of post-viral illness resulting from COVID-19, and directing the office to support efforts improving public health outcomes in the state. OSPMHC releases annual reports summarizing Long COVID impacts in Colorado, as well as key activities and accomplishments. Key statewide activities include developing surveys to assess socioeconomic impacts of Long COVID in Colorado, conducting a modeling study to examine factors and utilization patterns pre- and post-Long COVID diagnosis, and launching an initiative to better understand the association between clinical events prior to death and the designation of Long COVID on death certificates. Additionally, a Colorado Long COVID Community of Practice was established to discuss recent developments, share lessons learned, and inform strategies for surveillance and care, plus web/social media content to raise awareness. Minnesota The Minnesota Department of Health (MDH) launched the Long COVID program in 2021 to increase awareness and monitor potential long-term health issues following COVID-19 infection. In 2023, MDH secured state funding to expand the program and offer grants to organizations that support communities disproportionately impacted by COVID-19. Key initiatives include raising awareness about Long COVID and other infectious-associated chronic conditions (IACCs) through presentations, social media, and online resources; engaging individuals affected by Long COVID and conditions like myalgic encephalomyelitis/chronic fatigue syndrome; conducting epidemiological surveys and studies; forming a Long COVID Provider Guiding Council to foster collaboration, education, and system improvements among health care providers; and establishing the Long COVID Community Voices partner group, which led to a statewide network of organizations addressing Long COVID needs. Additionally, MDH has started a steering team of professionals and people with lived experience to guide the development of an actionable statewide framework for addressing IACCs and identify opportunities for cross-sector collaboration. New York City The New York City Department of Health and Mental Hygiene has focused its efforts on raising awareness and community engagement around Long COVID. Key activities include multilingual trainings for community and faith-based organizations and other partners to incorporate Long COVID information into their messaging with their respective communities, a study to assess long-term impacts of COVID-19 on New Yorkers, a three-part messaging campaign to share lived experience and stories of those living with Long COVID, and web/social media content to raise general awareness. Key Considerations Utilize public health resources such as the 10 Essential Public Health Services framework, “The Role of U.S. Public Health Agencies in Addressing Long COVID” and the health+ “Long COVID Human-Centered Design Report” to guide implementation of robust programs for Long COVID and related conditions. Share information on health agency websites, newsletters, or other forums to help raise awareness. Access to relevant information and resources is critical. Foster relationships and trust with various partners (e.g., health care, community-based organizations, and patient and caregiver communities) to learn about challenges/needs related to Long COVID and opportunities for collaboration. Collaborate with trusted messengers, such as community health workers and champions, to share community specific and linguistically appropriate information. Focus outreach efforts on under-resourced populations through culturally responsive frameworks. Partner with clinicians and health care systems to support clinical education and share relevant patient-focused resources for Long COVID and associated conditions. Promote sustained investment and support for Long COVID policies and research. Engage with key partners including health agency leadership, governor’s offices, state legislators, and advocacy groups to raise support for initiatives. Utilize local data and stories to show impact and advocate for dedicated resources. Long COVID Community of Practice article yes

Dear Colleague Letter Template: Long COVID Communication Dear Colleague Letter Template: Long COVID A letter template for communicating the latest information and resources related to Long COVID. Millions across the United States continue to experience the physical, mental, and social effects of Long COVID. This “Dear Colleague" letter template is designed to help public health departments, health care providers, and community partners address the complex and evolving challenges that come with the condition. This customizable resource streamlines communication by consolidating the latest Long COVID guidance and best practices, with placeholders for jurisdiction-specific services and tools. Simply download the template, copy/paste it onto your jurisdiction’s letterhead, and adapt it to your needs using the prompts. Download the Template article yes

Living With Long COVID: Stories, Science, and Public Health The webinar explores the ongoing and often unseen impact of Long COVID, bringing together perspectives from state public health leaders, health care providers, and individuals with lived experience. Speakers share personal stories, public health data, and clinical insights to illustrate the evolving reality of Long COVID. The session highlights emerging challenges, current response efforts, and persistent gaps in care, while identifying opportunities to strengthen awareness, improve support systems, and advance solutions for those affected. Speakers Karyn Bishof, President & Founder, COVID-19 Longhauler Advocacy Project Kathleen P. Banks, MPH, DrPH(c), Public Health Professional and Long COVID Advocate Heather Drummond, MPH, Deputy Director, Center for Access to Whole Person Care, Washington State Department of Health Monica Vidaurrazaga, MD, Infectious Disease, Physician Lead, Family Health Centers of San Diego Video Transcript: Living With Long COVID: Stories, Science, and Public Health article yes

Unlock key strategies for addressing and mitigating Long COVID effects, with step by step guidance, examples, and a wealth of supplementary resources.