On June 8, 2018, sleep apnea patients and their family members will share perspectives on what it’s like to live with sleep apnea with US Food and Drug Administration (FDA) regulators, drug and medical device developers, and researchers. The AWAKE Sleep Apnea initiative, an education and empowerment endeavor launched by the American Sleep Apnea Association (ASAA), will collect patient and caregiver experiences as they relate to diagnosis, impact on daily life, symptom management, and treatment expectations through an online survey and a meeting with FDA officials on June 8.

ASAA’s chief patient officer, Adam Amdur, says in a release, “Thirty years after I first showed signs of sleep apnea, I finally received a diagnosis and appropriate therapy. That first night of really good sleep was the first time I understood how much strain my body had endured. Now I do all I can to help others avoid that long and risky odyssey and to improve treatment options for all. That’s why we launched AWAKE Sleep Apnea.”

The AWAKE Sleep Apnea campaign will use social and traditional media to enlist patients and caregivers to share their experiences with the end goal of accelerating better treatment and care.

FDA staff will be listening. The June 8, 2018 meeting is part of a larger series designed to help regulators understand what individuals living with certain diseases experience, which symptoms present the most difficulty, which treatment benefits matter most to them, and how they perceive potential risks and harms associated with treatment. Representatives from FDA’s Centers for Drug Evaluation and Research (CDER) and Devices and Radiologic Health (CDRH) will participate, reflecting the use of both medications and medical devices to manage sleep apnea.

The Patient & Caregiver Survey will collect quantitative and qualitative information from patients and family members.

Information shared at the meeting and via the survey will be combined into a written report to be released later this summer. It will be directed to FDA, life science companies, researchers, the patient community, and the public.