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Jazz Pharmaceuticals and Hypersomnia Foundation Launch Campaign to Increase Understanding and Awareness of Idiopathic Hypersomnia

  • Initiative aims to generate awareness about idiopathic hypersomnia and encourage those who may be struggling with the sleep disorder to have effective discussions with their healthcare providers and supporters about their condition
  • Survey of healthcare providers found a lack of knowledge about idiopathic hypersomnia among physicians, and that the disorder is often misdiagnosed

Jazz Pharmaceuticals plc (Nasdaq: JAZZ) and the Hypersomnia Foundation today announced the launch of I Have IH, a disease awareness campaign that aims to increase understanding of the debilitating sleep disorder, idiopathic hypersomnia (IH), and empower patients to recognize their symptoms and improve conversations with their care teams.

is an often debilitating neurologic sleep disorder characterized by chronic excessive daytime sleepiness (the inability to stay awake and alert during the day resulting in the irrepressible need to sleep or unplanned lapses into sleep or drowsiness). In addition to excessive daytime sleepiness, symptoms may include severe sleep inertia (prolonged difficulty waking with frequent reentries into sleep, confusion and irritability), a core symptom of IH, as well as prolonged, non-restorative nighttime sleep and long and unrefreshing naps.1,2,3,4

People living with IH face challenges in managing their condition as healthcare providers underdiagnose IH and there is a current lack of U.S. Food and Drug Administration (FDA)-approved therapies. Jazz and the Hypersomnia Foundation have partnered together on this campaign to help increase awareness and knowledge of IH within the health and larger sleep community and to activate people who have or may have IH to initiate insightful conversations with their physicians.

To better determine physicians' understanding of IH, as part of the campaign, Jazz and the Hypersomnia Foundation conducted a survey of 305 healthcare providers, measuring their perceptions and knowledge of IH.

The results from the online survey, conducted by Toluna Analytics, underscore the need for more education and awareness of IH among healthcare providers. Only 36% of physicians reported that they believe other healthcare providers have a sufficient understanding of IH, while more than 90% said that physicians need more education about the sleep disorder.5

Healthcare providers' low familiarity with IH may contribute to patients experiencing long delays in receiving an accurate diagnosis—up to 10 to 15 years in some cases.6,7 Notably, 87% of the surveyed physicians stated that diagnosing IH can be challenging, with more than half of healthcare providers (57%) reporting that they have personally misdiagnosed IH as another condition before providing the correct diagnosis. Also, a strong majority of providers (86%) reported that they think that patients who have IH are often misdiagnosed with depression and/or anxiety.5

"I'm happy to see that Jazz and the Hypersomnia Foundation are committed to this community and working to help physicians and patients, as well as their supporters, better understand this debilitating neurologic sleep disorder, with the aim of strengthening dialogues between patients and their doctors," said Richard K. Bogan, MD, FCCP, FAASM, associate clinical professor at the University of South Carolina School of Medicine. "As a sleep specialist, the findings from this survey do not come as a shock. I am well aware that some specialties that often are the first to encounter IH patients don't have enough awareness of the sleep disorder or the diagnosing process to accurately diagnose them, often causing missed diagnoses."

Given the misdiagnosis and delay in diagnosis, more education and awareness of IH is needed within the sleep community. Nearly all healthcare providers (92%) said they agree that the negative impact of IH is significantly underestimated and that it deserves greater recognition among sleep disorders.5

"We're very pleased to be partnering with Jazz to raise awareness of idiopathic hypersomnia.  We know that patients in the IH community face many challenges—and one of those challenges is that most physicians do not have a deep understanding of this sleep disorder," said Diane Powell, board chair and chief executive officer of the Hypersomnia Foundation. "The results of this survey make it clear that the understanding of IH is very limited. Thus, it is vital for the entire sleep community to continue working to increase awareness of IH, both among physicians and the general population."

Survey respondents were also asked about their patients' perceptions, with a strong majority of healthcare providers saying that people living with IH are frustrated with the healthcare community (87%) and their disease management (95%). They also said patients feel their condition is not understood by the general public (66%).5 

"As a person living with IH, I can't stress enough how important it is that physicians and the greater public understand the disorder," said Meghan M. "I went nearly 5 years without a definitive diagnosis of what was causing my relentless need for sleep and extreme difficulty waking up, but when I was finally told by my doctor that I had IH, I felt a sense of relief. There needs to be more education and awareness of the disorder so other people who are living with it don't have to struggle as long as I did to receive a diagnosis."   

Jazz and the Hypersomnia Foundation will continue to seek different perspectives within the IH community and will survey people living with this disorder and their supporters in the future as part of the I Have IH campaign.

"At Jazz, we are committed to raising awareness of IH and are proud to be partnering with the Hypersomnia Foundation on this initiative," said Robert Iannone, executive vice president, R&D and chief medical officer, Jazz Pharmaceuticals. "The Hypersomnia Foundation gives voice to patients and their unmet needs, making them the ideal partner for the I Have IH campaign. Based on results from this survey, it's clear that work needs to be done to help ensure prompt and accurate diagnosis of this serious condition. We hope these survey results will encourage people to learn more about what IH is, and empower people experiencing symptoms to talk with a doctor."

Jazz and the Hypersomnia Foundation are committed to bringing more awareness to IH and other serious sleep disorders and helping people with these conditions at every stage of their journey—from education and diagnosis to treatment and patient assistance.

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Last Updated: 18-Mar-2021