Exploration of Patient and Caregiver Burden Due to Insurance Denials and Appeals for Spinal Muscular Atrophy (SMA) Treatment and Healthcare Access


Topic:

Clinical Management

Poster Number: V422

Author(s):

Lauren Eisenman, MS, Cure SMA, Mary Curry, ND, Cure SMA, Lisa Belter, MPH, Cure SMA, Maynard Friesz, Cure SMA, Mary Schroth, MD, Cure SMA

Spinal muscular atrophy (SMA) is a neuromuscular disease characterized by progressive muscle weakness and atrophy. The development of FDA-approved therapies has significantly improved the daily lives, overall health, and life expectancy of people with SMA. However, inadequate insurance coverage often results in denials and delays. The resulting inaccessibility of treatment and multidisciplinary supportive care imposes additional burdens on patients and caregivers. Cure SMA developed and distributed a survey from August 2024 – October 2024 to adults living with SMA and caregivers of children 17 or younger living with SMA, to identify and evaluate insurance coverage barriers for FDA-approved SMA treatments and other healthcare services. Racial and socioeconomic demographics comparing those who experienced to those who did not experience an insurance denial for an FDA-approved treatment for SMA will be presented. Further analyses will compare the reported rates of denial between adult and caregiver respondents, reasons for claims denial given by payors, the reported rates of treatment delay due to the appeal process, as well as the types of insurance utilized by those who experienced insurance denials. Reported disparities in specialty care access and respondent perspectives on the financial burden of SMA-related care expenses will also be explored. This analysis will provide insight into the frequency, type, and reasons for insurance denials experienced by members of the SMA community and help identify areas of unmet need in insurance coverage and access to care.