Keeping Patients at the Center of our Pioneering Sleep Medicine Research

Sleep disorders such as narcolepsy and idiopathic hypersomnia (IH) are chronic, neurological conditions that can have far-reaching impacts on the lives of individuals living with these conditions. Despite the ongoing research and development of improved therapeutic options, the challenges facing people living with sleep disorders are still misunderstood and often overlooked.

In my role as a Medical Director within Jazz’s neuroscience organization, I work closely with neurologists and sleep specialists to understand the challenges people living with sleep disorders face, as well as possible future treatment innovations Jazz may be able to provide. We focus on key pathways while keeping people living with debilitating sleep disorders at the center of our pioneering approaches to sleep medicine and continue to push ourselves and our industry partners to think holistically about patients’ health.

For more than 15 years, Jazz has been at the forefront of innovation in sleep medicine and remains committed to helping people living with hard-to-treat and debilitating sleep disorders live their lives more fully. Every March, which is Sleep Awareness Month, we take the opportunity to pause and reflect on the challenges those with sleep disorders face and the progress being made to improve their daily lives. This article focuses on two initiatives that Jazz Pharmaceuticals is spearheading to drive innovation, awareness, and better patient care for patients with narcolepsy and idiopathic hypersomnia.

Driving Innovation: Prioritizing Patients’ Cardiovascular Health

As a science-driven company, Jazz has been deeply committed to continuing to address unmet needs for people living with sleep disorders. Through our work, we have observed that the greater sleep community is largely unaware that people living with narcolepsy are at an increased risk of cardiovascular (CV) comorbidities, including hypertension, cardiovascular disease, obesity and diabetes.^1,2,3,4 In fact, people living with narcolepsy are two-to-three times more likely to have a stroke or heart attack than those living without narcolepsy.^1,2

Unfortunately, there are many risk factors that further exacerbate a patient’s risk for cardiovascular disease, including sodium intake. The average American consumes 3,400 milligrams (mg) of sodium in their daily diet, which is significantly higher than the 2,300 mg daily limit recommended by leading health authorities.⁵

To raise awareness and our collective understanding around the importance of prioritizing the CV health of people living with narcolepsy, Jazz has continued to study the relationship between narcolepsy and heart health, including the CardioVascular Burden Of Narcolepsy Disease (CV-BOND) study. I encourage you to visit www.narcolepsylink.com to learn more about ways to manage the cardiovascular health of the patients you treat.

By applying our pioneering approach and deep understanding of sleep disorders to related areas, we are advancing an industry-leading neuroscience pipeline and portfolio into new areas, with the mission to better serve people living with sleep disorders.

Patient Centricity: Incorporating the Patient Voice

The conditions our therapies help to treat are often lifelong and profoundly disruptive to everyday life, and so we strive to include the patient voice across all of the work that we do. People with sleep disorders are counting on us to meet their needs and deliver innovations aimed at improving the symptoms that impact them the most – we take that responsibility seriously. Ensuring the medical community has timely information about our products is key to helping them provide support to their patients.

Our work to improve the lives of those with idiopathic hypersomnia, is an excellent example of Jazz’s holistic view of the patient experience. Idiopathic hypersomnia is a devastating neurologic sleep disorder characterized by chronic excessive daytime sleepiness, prolonged, non-restorative nighttime sleep, cognitive impairment, and severe sleep inertia.^6,7 Unfortunately, as idiopathic hypersomnia is not common or widely understood, people face many challenges in managing their condition, including a diagnosis that is often delayed by many years.

To address this patient need, Jazz partnered with the Hypersomnia Foundation to launch I Have IH, a disease awareness campaign aimed at expanding knowledge of idiopathic hypersomnia and improving patients’ conversations with their healthcare providers. As part of the campaign, Jazz and the Hypersomnia Foundation surveyed healthcare providers to measure their perceptions and knowledge of the sleep disorder. Results from this survey showed that idiopathic hypersomnia is not well understood among physicians, underscoring the need for more education and awareness.

Jazz and the Hypersomnia Foundation are continuing to work together to address the unmet need of people living with idiopathic hypersomnia, and highlight work that still needs to be done at every stage of the idiopathic hypersomnia journey—from education and diagnosis to treatment and support. As part of the campaign, we continue to produce educational content around improving rates of accurate diagnoses and physician understanding around the unique attributes of idiopathic hypersomnia.

It is a great privilege to be able to advocate for patients with hard-to-treat conditions. Our goal has always been to provide patients and the communities we serve with the resources they need to live fuller lives, and keeping patients at the center of our pioneering sleep medicine research is how we hold ourselves accountable for delivering on this promise.