(70) Managed care approaches to address unmet patient needs in idiopathyic hypersomnia (IH): AMCP Market Insights program

Background: : Idiopathic hypersomnia (IH) is a sleep disorder that causes excessive daytime sleepiness, sleep inertia, and substantially decreased quality of life, and which affects nearly 100,000 Americans by some estimates. Comorbidities are frequent, and delays in diagnosis complicate treatment. IH is primarily managed with off-label stimulants and wakefulness-promoting agents; currently, lower sodium oxybate is the only Food and Drug Administration (FDA)-approved treatment option.

Objective: : To gain insights into health plan best practices for IH diagnosis and management.

Methods: : A multidisciplinary virtual panel was convened by AMCP in November 2024, bringing together 9 participants, including representatives from health plans, a patient advocacy group, and a sleep medicine specialist, among others. The program included live polling to capture quantitative feedback and facilitated discussions to gather qualitative insights.

Results: : Panelists acknowledge that disease burden and delays in diagnosis significantly impact the quality of life of patients with IH and identified improving timely, accurate diagnoses as a key issue in IH. Regarding drug management interventions, diagnosis by a sleep medicine specialist is required as part of the coverage criteria according to most panelists, as is an adequate trial of lower cost generic options prior to coverage of branded agents. Panelists appreciate the utility of FDA approval; however, in a condition like IH where most recommended medications are off-label but have a supporting body of evidence for their use, consensus guidelines are often the primary driver of coverage decisions rather than solely FDA-approval. Panelists suggested the following health plan best practices as part of an overall management strategy for IH: provider education, facilitating referrals to sleep medicine specialists and laboratories, reviewing coverage policies according to the FDA label and available consensus guidelines, and evaluating the safety of individual medications and the presence of comorbidities.

Conclusions: : These AMCP Market Insights program findings underscore the need for more timely diagnoses in IH via education in primary care and streamlined referrals to sleep specialists, for example. Sleep specialists can facilitate optimal treatment by assessing individual patient characteristics against available off-label and FDA-approved agents.

Sponsorship:: Jazz Pharmaceuticals, Inc.