A new report illuminates the real-world experiences and treatment needs of individuals with idiopathic hypersomnia.

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Summary: A new report titled “Voice of the Patient” on idiopathic hypersomnia (IH), published by the Sleep Consortium and global sleep-related advocacy organizations, highlights the real-world experiences and unmet treatment needs of individuals with IH. The report, based on feedback from an externally led patient-focused drug development (EL-PFDD) meeting and survey responses from 811 individuals across 21 countries, aims to guide research, regulatory decisions, and the development of new therapies for IH. The report has been submitted to the FDA and emphasizes the prolonged diagnostic delays and inadequacies in current treatment options for IH, calling for action to address these challenges.

Key Takeaways:

1. Diagnostic Delays and Treatment Gaps: The report reveals that individuals with idiopathic hypersomnia experience lengthy diagnostic delays, with an average of 14 years from symptom onset to diagnosis, and that current treatments remain largely ineffective for many patients.
2. Patient Advocacy and Research Focus: The “Voice of the Patient” report, part of the Illuminate Hypersomnia initiative, seeks to amplify the lived experiences of those with IH, serving as a resource for regulators, healthcare professionals, and pharmaceutical developers to prioritize more effective therapies and improved care.
3. Global Collaboration for IH Awareness: Supported by various international patient organizations and pharmaceutical companies, the report aims to foster ongoing research and educational efforts, including upcoming conferences and events, to raise awareness and improve outcomes for people living with idiopathic hypersomnia.

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The Sleep Consortium, in partnership with a coalition of global sleep-related patient advocacy organizations, announced the publication of the “Voice of the Patient” report on idiopathic hypersomnia (IH). 

This document, a product of the Illuminate Hypersomnia initiative, offers a view of the lived experiences and treatment aspirations of individuals with IH. 

The “Voice of the Patient” report is based on feedback collected through an externally led patient-focused drug development meeting held on April 11, 2024, and a survey that attracted 811 responses from people living in 21 countries. The report aims to shed light on the challenges faced by those living with IH, providing insights for regulators, pharmaceutical developers, researchers, healthcare professionals, and policymakers.

Amplifying IH Voices

The Illuminate Hypersomnia initiative was designed to amplify the voices of individuals impacted by IH. By exploring their personal narratives, current management strategies, and unmet treatment needs, the report seeks to guide future research and therapy development. It was a parallel effort to the US Food and Drug Administration’s (FDA) patient-focused drug development initiative to more systematically gather patients’ perspectives on their conditions and available therapies to treat them. 

The IH report has been submitted to the FDA for posting on the agency’s webpage of condition-specific meeting reports.

“For the first time, a 360-degree exposition of the lived experience of IH is portrayed with honesty and vulnerability on a scale never before seen, heard, or published,” says Claire Wylds-Wright, co-founder and chief experience officer of the Sleep Consortium, in a release. “This timely report is unequivocal in its individual and collective proclamation that living for years with a diagnosis, and additional years without adequate treatment for IH can wreak havoc on every aspect of an individual’s life.

“This community statement of what it’s like to live with IH demands a call to action that those in positions of responsibility and opportunity should respond to accordingly. Read this report, digest it, share it. And help unburden those who have been courageous enough to tell us what they need.”

Key findings from the report highlight:

• The array of symptoms that impedes daily functioning, including the IH hallmark of “irrepressible” daytime sleepiness, impaired quality of wakefulness, and “brain fog” that persists throughout the day.
• Lengthy diagnostic odysseys are the norm, with time from onset of symptoms to diagnosis ranging from 0 to 67 years, and an average of 14 years of diagnostic delay based on survey responses.
• The limitations of current treatments, even when used in combination, and the urgent need for more effective therapeutic options. Sixty percent of survey respondents indicated that IH is not controlled at all or is poorly controlled. 
• That stigma and disbelief in the reality of IH add considerably to the burden people with IH experience; they urgently wish to be believed, to be taken seriously, and to be treated with greater respect and dignity.

This full-color, 80-page report is expected to serve as a resource for advancing the dialogue around IH and supporting the development of targeted therapies. It also reinforces the ongoing commitment of the Sleep Consortium and its partners, including Associação Brasileira de Narcolepsia e Hipersonia Idiopática, Damm Good Sleep, Days4Naps, European Narcolepsy Alliance for Patients, Hypersomnia Alliance, Hypersomnia Foundation, Hypersomnolence Australia, Hypersomnolence Support Network Japan, Project Sleep, and PWN4PWN, to improving outcomes for those with IH.

The Hypersomnia Foundation will host a #BeyondSleepy satellite conference in Atlanta on Oct 19, 2024, featuring a day of programs and connection points for people living with IH and other sleep disorders. Other educational and research events are being planned to sustain momentum.

Organizations supporting the Illuminate Hypersomnia initiative with unrestricted educational grants are: Alkermes, Avadel Pharmaceuticals, Centessa Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda, and Zevra Therapeutics.