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Webinar

Vital Voices Webinar Series Part 3: Where the Rubber Meets the Road: Navigating State-Level Coverage and Payment Decisions

Topics
Health
Health Care Delivery
Patient-Centered Care

The third installment of the Vital Voices webinar series explored how patient organizations can navigate and inform state-level coverage and payment structures to improve treatment access. State Medicaid programs play a pivotal role in determining whether patients can receive the therapies they need, yet their decision-making processes can be complex and vary from state to state. This webinar featured perspectives from state agencies and patient organization leaders to equip advocates with practical strategies to engage with Medicaid, Prescription Drug Affordability Boards (PDABs), and other state decision-makers. Speakers highlighted how structured and well-prepared patient insights can inform state coverage policies, strengthen coverage and affordability determinations, and ultimately help ensure that access structures reflect the lived experiences of patients and families.

 

Speakers:

Amy Aikins
Former Director, Patient Access, Little Hercules Foundation

John E. Matta, PharmD, MBA
Interim Director of Pharmacy and Ancillary Services, Pharmacy Manager, Operations and PBA Services, NC Medicaid, Division of Health Benefits, NC Department of Health and Human Services

Andrew York, JD, PharmD
Executive Director, Maryland Prescription Drug Affordability Board (PDAB)

 

Key Webinar Takeaways

  • More formal pathways for patient input are emerging. States are establishing or expanding Beneficiary Advisory Councils (BACs), Pharmacy & Therapeutics (P&T) Committees, Drug Utilization Review Committees, and Medical Care Advisory Committees (MACs), creating new pathways for Medicaid beneficiaries, caregivers, and advocates to inform access decisions.
  • Patient experience insights are essential, and processes vary across states. Expectations and engagement structures differ, making it challenging and resource-intensive for patient organizations to understand the coverage processes and opportunities to engage in each state.
  • Capacity-building resources are growing. Several organizations, including the Little Hercules Foundation’s Rare Access & Coverage Education (RACE) Training Program,  offer training and materials to support patients and advocates preparing to serve in advisory roles and engage with Medicaid.
  • Support is needed to make participation meaningful. Questions regarding compensation, support services, and time demands emerged as critical factors in ensuring patients can engage effectively and sustainably.
  • Formal mechanisms for submitting input exist, and more are being developed. States shared examples for gathering patient input, including open public meetings, 30-day public comment periods, Maryland PDAB’s patient submission forms, and North Carolina Medicaid’s public comment processes for preferred drug list (PDL) decisions and clinical criteria. PDABs are a relatively new state entity that conduct drug cost reviews, assess affordability challenges, set upper payment limits on what states will pay for certain drugs, and may recommend policies to improve drug affordability and access.

 

Strategies discussed:

  • Prepare patients for advisory participation. Offer coaching, training, and readiness support to help individuals contribute meaningfully to BACs, MACs, and other committees (e.g., Little Hercules RACE program and forthcoming resources from the EveryLife Foundation).
  • Build relationships early. Patient organizations benefit from establishing ongoing communication with payers and advisory bodies through BACs/MACs and PDAB processes.
  • Standardize patient experience input. Tools such as common forms, templates, or submission portals help ensure that patient insights are consistent, usable, and aligned with decision-maker needs.
  • Share and adapt resources across patient communities. Advocacy organizations can strengthen their collective impact by exchanging materials and aligning expectations and best practices for engaging in pricing and coverage deliberations.
  • Encourage payer-side engagement. Connecting Medicaid programs and P&T committees with trained patient and caregiver representatives can support more informed utilization management and drug coverage decisions.

 

Webinar Resources Mentioned

This webinar was made available to patient organizations that participate in The Research Acceleration and Innovation Network (TRAIN). TRAIN is a network of more than 180 foundations interested in taking a strategic and entrepreneurial approach to funding medical research. TRAIN convenes forward-thinking groups to learn from each other and share their novel solutions with the rest of the medical research system. FasterCures accepts new organizations to TRAIN on an ongoing basis. There is no fee for the application or for membership. To learn more and apply, visit the TRAIN application. Please contact [email protected] for more information about TRAIN.

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