An enlightening and impactful Patient Advocacy Virtual Town Hall, where we dive deep into critical state policy issues affecting patient care, access, and affordability. This event brought together policymakers, healthcare experts, and patient advocates to discuss and shape the future of healthcare policy.
Panel 1: Safe Repair of Medical Devices
21:00 Panel 2: Upper Payment Limits and Prescription Drug Affordability
57:25 Panel 3: Charity Care Reform (340B)
Recap:
The Patients Rising state policy town hall focused on several pressing healthcare policy issues anticipated to impact state legislative sessions in 2025. Key topics included the safe repair of medical devices, upper payment limits (UPL) on prescription drugs, the role of prescription drug affordability boards (PDABs), and charity care.
MacKay Jimeson opened by emphasizing the importance of state-level policy, highlighting legislative timelines and key healthcare issues. The first panel, led by Terry Wilcox, covered the "safe repair" act, exploring concerns about allowing unregulated entities to repair FDA-regulated medical devices. Panelists Peter Pitts and Dr. Rosalyn Layton warned of potential risks, including compromised device efficacy, patient safety, and cybersecurity vulnerabilities, as well as undermining innovation by diminishing incentives for technology companies.
In the second part, Jimeson led discussions on UPLs and PDABs, primarily featuring Amanda Boone from Cystic Fibrosis United and policy consultant Naomi Lopez. Lopez warned that PDABs, unelected state boards empowered to cap medication prices, could limit patient choice by removing pricing decisions from patients and their doctors. Boone shared her personal concerns regarding Colorado's PDAB and its impact on access to Trikafta, a life-saving cystic fibrosis drug. Both panelists voiced concerns that PDABs' pricing caps could lead to increased utilization management barriers, such as prior authorizations, and highlighted the risk that savings might benefit payers, not patients.
In the third part, Demi Montgomery, Eli Rushbanks, and MacKay Jimeson discussed the challenges and legislative issues surrounding charity care for uninsured patients. Key points from the conversation include:
Barriers to Awareness: Demi highlighted that many patients are unaware of charity care options due to poor communication by hospitals. This lack of information disproportionately impacts vulnerable communities, such as the BIPOC population. Hospitals often fail to inform patients, leaving them with significant financial burdens and exacerbating mental health issues.
Systemic Inefficiencies and Access Issues: Eli shared data showing that only 29% of eligible patients access charity care, with hospitals often denying applications due to technicalities or procedural obstacles. A significant portion of eligible patients (65%) remain unaware of these programs. He also noted the frequent challenge patients face in navigating complex application requirements.
Reform and Enforcement Needs: The panel discussed the lack of enforcement mechanisms at the federal level, where oversight mainly falls under the IRS, which has limited enforcement capabilities. By contrast, some states treat charity care as a consumer protection issue, enabling more robust enforcement through state health departments and attorneys general. The speakers advocated for state-level policies that would require hospitals to screen all patients automatically for charity care eligibility to streamline access.
The conversation underscored the need for policy reform to enhance transparency, patient awareness, and access to charity care across the U.S.
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