Defining the Future of Sleep Medicine: Reflections from SLEEP 2026

For many people living with narcolepsy and idiopathic hypersomnia (IH), some of the most disruptive symptoms are the hardest to describe. Patients share feeling “foggy,” “like wading through quicksand” or “murky” — experiences that don’t always fit neatly into traditional clinical language, but greatly impact how a person moves through daily life. As sleep medicine research evolves, so too must our understanding of what improvement realistically looks and feels like for patients. 

While an estimated 140,000 people in the United States are diagnosed¹ with narcolepsy and IH, these conditions remain widely underrecognized and misunderstood. This limited awareness among both patients and healthcare providers has real consequences and can contribute to underdiagnosis and delays in care.² For too many patients, diagnosis can be delayed for years, care pathways are fragmented, and difficult symptoms may persist even with treatment. 

At Alkermes, we believe strong scientific innovation is critical to making progress in sleep medicine. However, progress also requires a deep understanding of how sleep disorders affect people’s daily lives and a commitment to ensuring those experiences help shape how improvement is achieved and measured.

An inflection point in sleep medicine

SLEEP 2026 convened the sleep medicine community to reflect on both the progress made and the work still ahead. With researchers, clinicians and industry leaders discussing today’s emerging science and evolving priorities, it became clear that the field is reaching an inflection point and is on the cusp of delivering potentially transformative new medicines for people living with chronic sleep disorders.

This year’s meeting was particularly important for Alkermes. Following our recent acquisition of Avadel Pharmaceuticals plc, we are entering a new phase, bringing together scientific expertise, clinical momentum and a deeper understanding of the treatment needs of people living with narcolepsy and IH. 

We presented 26 abstracts reflecting the breadth and depth of our work across sleep medicine and further establishing our position as a leader in sleep medicine and orexin biology. Viewed holistically, our activities at SLEEP reflect a broader evolution across the field, where scientific progress is being matched by greater attention to how the patient experience should inform treatment advancements and care. 

Harnessing lived experiences with sleep conditions

Discussions throughout SLEEP reinforced something we have long believed: progress in sleep medicine starts with listening. 

Building on the efforts of our Health Economics and Outcomes Research team, and ongoing engagement with the sleep community, we had the opportunity to better understand how patients describe living with narcolepsy and IH in their own words. At both SLEEP and Beyond Sleepy, patients, caregivers and healthcare professionals were invited to share insights that reflected the words and phrases actually used by members of the patient community.

These perspectives are more than words. They provide context that helps us better understand what daily life with these conditions actually feels like and illuminate aspects of disease burden that may not be fully captured by traditional measures. Through these efforts, the often-profound effect that hypersomnolence disorders have on patients’ daily lives was further confirmed. Beyond the impact of excessive daytime sleepiness, more than 40% of submissions mentioned the cognitive impairment which often accompanies these conditions, illustrated by phrases such as “brain fog,” “difficulty concentrating” and others. 

Insights like these influence how we think about outcomes and clinical benefit while also creating opportunities for more productive conversations between patients and providers, grounded in shared understanding rather than translation. 

Where we go from here

We are committed to continuing to research and develop innovative treatments in the sleep space. This innovation is fueled not only by better understanding of the biology of disease and biochemistry capabilities that allow us to design suitable molecules, but also a greater appreciation for all the ways these diseases impact patients’ lives.

As drug developers, we must listen closely to how these conditions affect daily life, from cognition and fatigue to relationships, routines, and overall functioning. Insights from qualitative research, social listening and outcomes research continue to shape how we study narcolepsy and IH and how we think about improvement beyond traditional measures of sleep and wakefulness. The field is increasingly recognizing that symptoms like cognitive functioning and disrupted attention remain central to the patient experience.

The future of sleep medicine will ultimately be defined by how well we integrate these perspectives into the great science happening in the clinic and across our labs. At Alkermes, we remain committed to ensuring patient insights shape our work, with the goal of helping people living with narcolepsy and IH live their daily lives more fully.

References:

^{1. Cohen et al., Sleep Med 43:14 (2018) and Longstreth et al., Sleep Med 10:422 (2009) prevalence rates applied to US population}

^{2.Doane, M.J, et al., Diagnosis and Symptoms of Narcolepsy from the Patient Perspective: Results from In-Depth Qualitative Interviews. Poster presented at: Psych Congress; Sept. 6-10, 2023; Nashville.}