As a leader in sleep medicine, each year we look forward to attending the annual joint meeting of the American Academy of Sleep Medicine and the Sleep Research Society – or APSS SLEEP. Our leadership goes beyond innovative drug development, as we focus on areas often overlooked by the industry, such as the patient and caregiver experience. The breadth of our presence at SLEEP 2023 reaffirms our commitment to the sleep community.
Jazz’s nearly 20-year leadership has been built around tackling rare, hard-to-treat diseases. Through our innovation-first mentality and patient-focused approach, we strive to deliver transformative solutions to underserved patient communities, such as those living with idiopathic hypersomnia.
Idiopathic hypersomnia (IH) is an often-debilitating neurologic sleep disorder characterized by chronic excessive daytime sleepiness, non-restorative nighttime sleep and severe sleep inertia (prolonged difficulty waking, with frequent reentries into sleep, confusion, and irritability). People living with idiopathic hypersomnia are consumed by sleep, and feel exhausted during the day, even after a full night’s sleep. The condition is considered rare, as there are only about 37,000 adults in the U.S. that are diagnosed with idiopathic hypersomnia and actively seeking care, with many more likely living with the sleep disorder undiagnosed.1,2 Many often struggle with how best to manage their symptoms, as healthcare providers often misdiagnose the condition due to the lack of awareness of the condition – for up to 10 to 15 years in some cases.3,4,5
Earlier this year, as part of our continued commitment to increase awareness around this rare and complex sleep disorder, Jazz hosted our first-ever LinkedIn Live panel event in support of the I Have IH awareness campaign, which we launched with the Hypersomnia Foundation in 2021. I had the privilege of moderating an inspiring discussion between the chief executive officer of the Hypersomnia Foundation, Claire Wylds-Wright, and patient and advocate, Victoria Kirby York. During the engaging conversation, we discussed the barriers and struggles patients face reaching a diagnosis and managing their symptoms daily.
While in Indianapolis for SLEEP 2023, we will be participating in several exciting opportunities. Most notably, we look forward to presenting results from our real-world claims analysis of the clinical burden of people diagnosed with idiopathic hypersomnia, which found they experienced significantly higher prevalence of comorbidities, such as cardiovascular conditions and mood disorders, than those not diagnosed with the sleep disorder. These results confirm the burden that idiopathic hypersomnia places on those living with the condition.
We are also excited to premier the first episode from our new Pioneering Pathways platform at SLEEP 2023. Pioneering Pathways is an engaging and interactive series intended to raise awareness around Jazz’s unique approach to R&D innovation and caring for patients, their communities, and our colleagues. Our first episode focuses on idiopathic hypersomnia and features clinicians and experts sharing insights on Jazz’s R&D path toward an approved treatment for idiopathic hypersomnia. The episode also features patient and advocacy stories shining a light on how the sleep disorder manifests daily, the struggles with receiving an accurate and timely diagnosis and how patient-advocacy groups like the Hypersomnia Foundation show up and give a voice to patients.
Finally, we plan to attend the Hypersomnia Foundation’s 2023 #BeyondSleepy Conference where we will take the opportunity to learn more about idiopathic hypersomnia from leading experts as well as first-hand from patients.
We are grateful to support the idiopathic hypersomnia community and patients who are willing to share their stories and experiences to raise awareness for this debilitating disease, as well as to the Hypersomnia Foundation for their ongoing support in educating around this sleep condition. I look forward to sharing more later this year on our continued partnership with the idiopathic hypersomnia community and the Hypersomnia Foundation.
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