Patient Advocacy in Sleep Medicine

In this episode of Talking Sleep, host Dr. Seema Khosla welcomes three patient advocates who are reshaping how sleep medicine is practiced and funded. Matt Horsnell, living with two sleep disorders and active as an author and panelist; Emma Cooksey, a patient-advocate and host of the Sleep Apnea Stories podcast; and Julie Flygare, a lawyer, author, and founder of Project Sleep, share their transformative advocacy work.

While clinicians often think of advocacy as writing letters or making donations, these three demonstrate that patient advocacy encompasses far more complexity and impact. They explain the multiple dimensions of advocacy work: legislative advocacy that influences policy and funding, educational advocacy that raises awareness and understanding, and research advocacy that shapes the scientific agenda.

The conversation begins with personal stories—what brought each advocate to this work and how living with sleep disorders motivated their commitment to systemic change. Matt shares insights as someone navigating two sleep conditions, while Emma and Julie discuss how legal training informed their approaches to advocacy and systems change.

Legislative advocacy receives detailed exploration. The guests explain how patient voices influence congressional action, regulatory decisions, and funding priorities. They discuss educational advocacy—raising public awareness, changing misconceptions, and helping people recognize sleep disorders they might otherwise dismiss or normalize.

Project Sleep, Julie's organization, serves as a centerpiece for discussion. While Project Sleep doesn't fund research directly, the conversation addresses which organizations do fund sleep medicine research and how clinicians and patients can access federal funding mechanisms. The guests provide insights into how disease-specific organizations like Wake-up Narcolepsy secure funding and the lessons applicable to sleep medicine more broadly.

Project Sleep's helpline receives attention—what it offers, who it serves, and the critical challenge of sustainability when grant funding ends. The guests discuss Rising Voices, an initiative amplifying patient narratives and lived experience in policy and clinical discussions.

A particularly valuable discussion addresses how clinicians can meaningfully engage with patient advocacy. Is this space exclusively for people living with sleep disorders, or can healthcare providers contribute? The conversation explores collaboration opportunities wi