Science Stories

“Low levels of awareness may contribute to patients experiencing long delays in receiving an accurate diagnosis—up to 10 to 15 years in some cases.”
Despite the disruptive effects IH can have on nearly every aspect of a patient’s life, there are currently no U.S. FDA-approved treatments for the condition in the U.S.

Idiopathic Hypersomnia, Understanding the Often Overlooked Sleep Disorder

Serious sleep disorders can have a negative impact on patients at home and work, often getting in the way of their daily activities. Unfortunately, while these conditions continue to take a physical and mental toll on patients and their loved ones, the road to diagnosis and appropriate treatment can be long and filled with challenges and setbacks.

Idiopathic hypersomnia (IH) is a debilitating neurologic sleep disorder characterized by chronic excessive daytime sleepiness.1,2,3,4 Patients with IH are often unable to stay awake and alert during the day, which results in an irrepressible need to sleep or unplanned lapses into sleep or drowsiness.1,2,3,4 It’s not a problem that can be solved with naps or a good night’s sleep—people with IH may sleep a normal or longer than normal amount of time each night but still experience excessive sleepiness during the day.1

Each day, people living with IH face a variety of challenges in managing their condition. In addition to daytime sleepiness, IH symptoms may also include having difficulty waking—often falling back to sleep—confusion and irritability.1,2,3,4 Some patients have even reported instances of sleep paralysis and sleep-related hallucinations linked to IH.4

Low Disease Awareness and Limited Treatment Options

Despite the disruptive effects IH can have on nearly every aspect of a patient’s life, there are currently no U.S. FDA-approved treatments for the condition. Nonpharmacologic interventions are currently used to manage symptoms of the disorder, which may include counseling, psychotherapy, self-care strategies and changes to diet and exercise routines.5

Managing the challenges of IH is further complicated by low levels of awareness which may contribute to patients experiencing long delays in receiving an accurate diagnosis—up to 10 to 15 years in some cases.6,7 Nearly half (47%) of patients have received multiple narcolepsy diagnoses before their first IH diagnosis.8

According to data from insurance claims, the number of people diagnosed with IH and actively seeking healthcare is approximately 37,000 patients in the U.S.; however, given how often IH is misdiagnosed, many people have not received an official diagnosis, indicating that the unmet need may be significantly greater.6,7,8,9 ,10

Prioritizing Patient Voices

Given these delays, more education is needed to increase awareness and knowledge of IH within the health and larger sleep community and activate people who have IH to initiate insightful conversations with their physicians. Jazz Pharmaceuticals and the Hypersomnia Foundation recently announced the launch of I Have IH, a new disease awareness campaign to increase understanding of the condition and empower patients to recognize their symptoms and have better conversations with their care teams.

Together, Jazz and the Hypersomnia Foundation are working to elevate patients’ voices, address their unmet needs and highlight work that still needs to be done at every stage of the IH journey—from education and diagnosis to treatment and patient assistance.

References
1Trotti LM. Idiopathic Hypersomnia. Sleep Med Clin. 2017;12(3):331-344. doi:10.1016/j.jsmc.2017.03.009.
2American Academy of Sleep Medicine. The International Classification of Sleep Disorders. Third Edition (ICSD-3). 2014.
3Billiard M, Sonka K. Idiopathic hypersomnia. Sleep Med Rev. 2016 Oct;29:23-33. doi: 10.1016/j.smrv.2015.08.007. Epub 2015 Sep 3. PMID: 26599679.
4Khan Z, Trotti LM. Central Disorders of Hypersomnolence: Focus on the Narcolepsies and Idiopathic Hypersomnia. Chest. 2015;148(1):262-273. doi:10.1378/chest.14-1304.
5Schinkelshoek, M.S., Fronczek, R. & Lammers, G.J. Update on the Treatment of Idiopathic Hypersomnia. Curr Sleep Medicine Rep 5, 207–214 (2019). https://doi.org/10.1007/s40675-019-00158-7.
6Anderson KN, Pilsworth S, Sharples LD, Smith IE, Shneerson JM. Idiopathic hypersomnia: a study of 77 cases. Sleep. 2007 Oct;30(10):1274-81. doi: 10.1093/sleep/30.10.1274. PMID: 17969461; PMCID: PMC2266276.
7Masri TJ, Gonzales CG, Kushida CA. Idiopathic Hypersomnia. Sleep Medicine Clinics. 2012 June;7(2):283-289. doi: https://doi.org/10.1016/j.jsmc.2012.03.012.
8Data on File-JZP258-2020-047-29. Oct 2020.
9Hess G, Mehra R, Carls G, et al. 0625 US Prevalence of Narcolepsy and Other Sleep Disorders From 2013–2016: A Retrospective, Epidemiological Study Utilizing Nationwide Claims. Sleep. 2018 Apr;41(suppl_1):A232-A232. doi: 10.1093/sleep/zsy061.624.
10Jazz Pharmaceuticals, Inc, Data on file.