World Sleep Day 2025: Spotlight on Idiopathic Hypersomnia

Each March, the World Sleep Society celebrates World Sleep Day, an important observance and reminder for all of us of the often-overlooked role that healthy sleep can play in our day-to-day lives. This year’s theme is “Making Sleep Health a Priority.” At Alkermes, we are committed to embodying this theme by continuing to raise awareness on behalf of people living with sleep disorders such as narcolepsy and idiopathic hypersomnia (IH). 

Our team’s work is both inspired and informed by the lived experience of patients, and we work tirelessly to integrate their perspectives into our research and development efforts. Last year, we were a proud corporate sponsor of the Sleep Consortium’s Illuminate Hypersomnia initiative, which included a patient-focused drug development (PFDD) meeting focused on IH. This event, held in April of 2024, convened patients, caregivers, researchers, industry leaders and many others to highlight the unmet needs of people living with this rare, complex and chronic disease. Insights from this meeting, as well as a corresponding PFDD survey with more than 800 responses, resulted in the publication of a Voice of the Patient report. This pivotal document offers a comprehensive view of the lived experiences and treatment aspirations of individuals with IH.

In celebration of World Sleep Day, I’d like to highlight a few important findings from this report. Typically marked by excessive daytime sleepiness and severe, prolonged sleep inertia (difficulty waking with repeated returns to sleep), along with other symptoms, idiopathic hypersomnia affects about 40,000 people in the United States. IH is a debilitating disease, with one patient noting, “IH affects every single thing I do, from the minute I wake up in the morning.” 

93% of survey respondents who live with IH reported their symptoms have a “moderate or high impact” on their lives. Beyond the symptom impact, the journey to receiving a diagnosis can be long, with survey respondents reporting that on average, it took 6.5 years to receive a correct diagnosis after symptom onset. Finally, 60% of patients surveyed reported that with current treatment options, their IH is either not controlled at all or poorly controlled (“better than nothing”).

These and many other findings contained in this report should call all of us interested in sleep health to action. At Alkermes, my colleagues and I are working with urgency to develop potential treatment options for people living with IH and other sleep disorders. As we continue this journey, we are committed to finding opportunities to listen to and elevate the voices of patients, caregivers and loved ones. I invite you to join Team Alkermes in making sleep health a priority in 2025 and beyond by reading this report and deepening your understanding of the unmet needs and resiliency of the IH community.

Reference: https://sleepconsortium.org/wp-content/uploads/2024/09/Illuminate-IH_PFDD_VOP-Report-FINAL-digital.pdf