By Kelvin Tan, Senior Vice President, Chief Medical Officer at Jazz Pharmaceuticals
For nearly 20 years, Jazz Pharmaceuticals has been a pioneer in sleep medicine, committed to exploring new ways to improve the lives of people living with sleep disorders. After working in the pharmaceutical industry for more than two decades, I’ve seen firsthand how disruptive sleep disorders can be to the lives of patients and their loved ones when they go untreated. Prior to my tenure at Jazz, I spent 10 years in clinical medicine and academic research in pediatrics, before making the switch to work in the pharmaceutical industry, where I felt I could help more patients by bringing new medicines to communities who need them most. By incorporating the patient voice into our work and addressing areas of high unmet need, Jazz has become a leader in sleep medicine, and, through research and development, furthers that legacy by developing innovative new medicines and exploring new indications.
Meaningful Actions to Address the Challenge of Complex Sleep Disorders
Sleep disorders represent a diverse group of approximately 80 conditions that impair sleep or prevent individuals from getting restful sleep, and, as a result, can cause daytime sleepiness and other symptoms.1 We understand that care often needs to go beyond symptom relief. As a company, we encourage our teams to think holistically about a patient’s health and wellbeing and aspire to develop next-generation therapies and support programs that address their varied, and often unmet, needs. That is what led us to pursue research in idiopathic hypersomnia.
Idiopathic hypersomnia is a debilitating neurologic sleep disorder characterized by chronic excessive daytime sleepiness.2,3,4,5 According to the International Classification of Sleep Disorders, Third Edition, additional supportive clinical features include severe sleep inertia or sleep drunkenness (waking with a strong desire to return to sleep that’s associated with prolonged grogginess and confusion) and long, unrefreshing naps.3 Patients with idiopathic hypersomnia 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.2,3,4,5 It’s not a problem that can be solved with naps or a good night’s sleep—people with idiopathic hypersomnia may sleep a normal or longer than normal amount of time each night but still feel unrefreshed in the morning and experience excessive sleepiness during the day.2
Exploring treatment options for the symptoms of idiopathic hypersomnia is an example of how Jazz is constantly refining and evaluating the types of options we can bring to people living with chronic, debilitating sleep disorders.
Going Beyond Medicine with Patient-Centered Educational Programs
There has been a substantial shift over the last two decades in how the pharmaceutical industry approaches patient-centric drug development. Jazz’s approach to patient-centricity begins with engaging patients early on to understand their needs and seek their input into the design of our clinical trials and recruitment strategies. Our hope is that the lasting impact of this shift is that we develop medicines that have a meaningful and holistic impact on their lives.
Our partnership with the Hypersomnia Foundation to launch the I Have IH campaign is a good illustration of how we look to gain greater perspective and better understand the unmet needs across the idiopathic hypersomnia community – from both providers, patients and their families – and to increase awareness and understanding of the disorder. As part of the campaign, we surveyed healthcare providers, patients, and supporters to gauge their perceptions and knowledge of idiopathic hypersomnia. What we learned was that more than half of providers (57%) had personally misdiagnosed idiopathic hypersomnia as another condition before providing the correct diagnosis, and nearly all patients (92%) reported that having symptoms of idiopathic hypersomnia prevented them from being who they wanted to be.
These results were certainly eye-opening and demonstrated the need for education. I continue to be impressed in partnering with the sleep community – that we can collaborate to address the challenges that patients face daily together. We see these challenges as opportunities to innovate.
Innovation Leading to the Next Generation of Sleep Science
The upcoming Annual Meeting of the Associated Professional Sleep Societies, known as SLEEP 2023, is taking place in Indianapolis this June. SLEEP 2023 serves as the premier venue to share cutting-edge research and evidence-based education that advances the science and clinical practice of sleep medicine. We’re honored to showcase our sleep portfolio through several presentations at this year’s meeting, including data from our RHYTHM study that explores the clinical burden for patients diagnosed with idiopathic hypersomnia in identifying the prevalence of comorbidities. These data show that people living with idiopathic hypersomnia experience significantly higher rates of occurring conditions such as mood disorders, cardiovascular disease, stroke and other severe, potentially life-threatening cardiovascular events, when compared to a non-idiopathic hypersomnia control group. These results speak to the clinical necessity of holistic treatment strategies for this patient population, and the need for careful attention to a patient’s overall health and symptoms.
Over the past two decades, we have remained focused on patient populations with high unmet needs, such as the idiopathic hypersomnia community, and continue to expand our pipeline targeting these complex diseases. We are not deterred by what may seem difficult. Instead, we will continue to explore the world around us to develop and deliver innovative medicines.
To learn more about Jazz’s leadership in sleep disorders, please visit jazzpharmaceuticals.com to view our I Have IH survey results.
1 Cleveland Clinic. Common Sleep Disorders. 2020. Available at: https://my.clevelandclinic.org/health/articles/11429-common-sleep-disorders#:~:text=How%20common%20are%20sleep%20disorders,States%20suffer%20from%20sleep%20disorders. Last accessed April 2023.
2 Trotti LM. Idiopathic Hypersomnia. Sleep Med Clin. 2017;12(3):331-344. doi:10.1016/j.jsmc.2017.03.009.
3 American Academy of Sleep Medicine. The International Classification of Sleep Disorders. Third Edition (ICSD-3). 2014.
4 Billiard 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.
5 Khan 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.