Lost in Translation: Disseminating Family Spillover Effects on Value and Affordability Assessment Decision Makers

ISSUE: There is increasing awareness of the impact of diseases and treatments on family members and informal (or unpaid) caregivers, or family spillover effects. The Centers for Medicare and Medicaid Services (CMS), State-based Prescription Drug Affordability Boards (PDABs), and the updated value assessment framework from the Institute for Clinical and Economic Review (ICER) have all cited the need and consideration of evidence on family spillover effects in affordability and value assessments. However, there is heterogeneity both in capturing and disseminating information on family spillover effects to inform both quantitative and qualitative components of value and affordability assessments. The purpose of this workshop is to share and debate approaches to collect, distill and communicate relevant evidence on family spillover effects to policy makers in a way to can be incorporated into value and affordability assessments. OVERVIEW: Workshop attendees will obtain a working knowledge of approaches for collecting and disseminating family spillover effects for health technology assessment bodies and policy makers conducting value and affordability assessments. R. Brett McQueen will lead the discussion and provide an overview of how ICER and PDABs may incorporate family spillover effects into value and affordability assessments. Jason Resendez will present key types of evidence messages on family spillover effects used by the National Alliance for Caregiving in advocacy activities. Stacey Kowal will present a quantitative example of the impact of family spillover effects on treatment-related economic and patient-centered outcomes from Spinal Muscular Atrophy (SMA). Finally, Andrew York will present how this information may be used in the policy arena through the Inflation Reduction Act or State PDABs. The discussion leader will engage with discussants and workshop attendees through ISPOR polling software to debate key approaches to include family spillover effects into value and affordability assessments.