In late 2025, the Society for Women’s Health Research’s (SWHR) Policy Advisory Council convened leading professionals in health policy and patient advocacy to exchange insights on the increasingly dynamic health policy landscape. With so much happening in the field — from appropriations and funding priorities to regulatory activity, including within artificial intelligence and digital innovation — the role of coalitions, alliances, and patient advocates is increasingly important in advancing policy and advocacy goals both in women’s health and beyond. The Policy Advisory Council’s guest speakers helped illuminate where progress is happening, where challenges remain, and where shared priorities are emerging across health and health care.
September Meeting: Agency Appropriations
In September, Eric Gascho, Vice President at CRD Associates and Executive Director of the Coalition for Health Funding, and Jenny Luray, Senior Vice President for Strategy and Public Engagement at Research!America brought keen insights to the Policy Advisory Council , discussing the structural, political, and fiscal elements shaping health policy and their implications on biomedical research and patient communities.
The Coalition for Health Funding is a membership-based advocacy alliance focused primarily on federal investment in public health, including but not limited to the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Food and Drug Administration (FDA). Meanwhile, Research!America — another advocacy alliance — is a leading voice in advancing policies and funding to support medical and health research in the United States. Gascho and Luray were invited to provide their expertise at a particularly frenzied time.
At the time, conversations around fiscal year (FY) 2026 funding were ramping up as the September 30 deadline barreled closer. All eyes were on the Labor, Health and Human Services, Education, and Related Agencies (Labor-HHS) appropriations bill and the provisions that could significantly impact public health, including funding for medical research, Medicare, and Affordable Care Act (ACA) premium tax credits. At the same time, debates intensified over whether the federal government would face a shutdown or rely on continuing resolutions to extend funding beyond the end of the fiscal year.
Gascho and Luray provided predictions and analyses on the appropriations process as it stood at the time — describing implications for federal health agencies under the U.S. Department of Health and Human Services — and how their respective organizations were engaging in the appropriations process. For example, the Coalition for Health Funding issued a statement encouraging bipartisan negotiation to robustly fund federal health agencies and to avoid overreliance on continuing resolutions — messaging that SWHR echoed in its own messaging around the appropriations process.
In their presentations, both Gascho and Luray highlighted how funding matters with respect to public health and support for federal health agencies are at risk as lawmakers are making funding decisions in an increasingly competitive fiscal environment — a conversation we are seeing unfold in real time as lawmakers are currently working to finalize FY 2026 appropriations.
December Meeting: Rare Disease Policy and the Power of Partnership
In December, the Policy Advisory Council welcomed Annie Kennedy, Chief of Policy, Advocacy & Patient Engagement for the EveryLife Foundation for Rare Disease. Rare diseases affect millions of individuals and families across the United States. While more than 10,000 distinct rare diseases have been identified, only a small fraction — about 5% — have an FDA-approved therapy. The economic impact of rare diseases is profound, exceeding $1 trillion annually when accounting for direct medical costs, lost productivity, and out-of-pocket cost factors for patients and caregivers.
Kennedy shared powerful insights into what’s known as the “diagnostic odyssey,” the often long and winding journey many patients face before receiving an accurate diagnosis. According to the National Economic Burden of Rare Disease Study — a study developed by EveryLife Foundation and partners in the rare disease community — patients spend an average of more than six years without an official diagnosis and see nearly 17 specialists before finding answers. These delays carry a significant financial cost, with average lifetime medical expenses exceeding $220,000 for individuals without a diagnosis. These realities underscore how every minute and every policy decision matter, both for accelerating discoveries in diagnosis and treatment pathways and for improving access to patient care.
The conversation also included updates on related policy developments, such as the FDA’s Rare Disease Evidence Principles (RDEP). Developed by the FDA’s Center for Drug Evaluation and Research (CDER) and Center for Biologics Evaluation and Research (CBER), RDEP is intended to help modernize evidence collection by proposing a new review pathway to support approval of drugs for rare diseases with very small patient populations and significant unmet need. This announcement comes at a time when advances in emerging technologies like gene editing and real-world data analytics are reshaping how rare-disease drug development is approached.
Collaboration as a Strategy for Policy Impact
SWHR strives to bring relevant and meaningful speakers to its Policy Advisory Council. The fall meeting speakers were all anchored in a powerful and timely theme: coalition-building is not just valuable, it’s necessary. As the policy landscape experiences increasing competing issues and priorities, coalitions offer advocates a path forward. SWHR is grateful to be a part of several policy coalitions, providing a voice for the need for prioritizing investment in women’s health research funding. By identifying shared priorities and strategically leveraging collective expertise, relationships, and patient stories through coalition, advocates can amplify their perspectives, strengthen their impact, and drive meaningful progress in public health and research.