2021 Sleep Advocacy Forum Educates and Elevates Sleep Field

Professional Societies

• American Academy of Sleep Medicine
• American Lung Association
• American Thoracic Society
• Sleep Research Society
• Society for Behavioral Sleep Medicine
• Society for Research on Biological Rhythms

Advocacy Organizations

• American Sleep Apnea Association
• Circadian Sleep Disorders – Network
• Hypersomnia Foundation
• KLS Foundation
• Narcolepsy Network
• National Sleep Foundation
• Project Sleep
• Restless Legs Syndrome Foundation
• Start School Later
• Wake Up Narcolepsy

It’s incredible to have such a group here together, showing your commitment to sleep and advocacy.”

—Julie Flygare

Julie Flygare, President and CEO of Project Sleep, welcomed participants and community members to the second annual Sleep Advocacy Forum.

I never thought I’d be this excited about data and machine learning, but the possibilities are really outstanding.”

—Dr. Marishka Brown

Dr. Marishka Brown, Director of NIH’s National Center on Sleep Disorder Research (NCSDR), kicked off the Medical Research Panel. Dr. Brown shared insights about funding for sleep disorders research across NIH, and updates about the Sleep Research Plan, as well as some critical and timely opportunities.

Patient engagement is something we’re trying to integrate into many of our programs – making representatives of the patients actually on-par partners of the investigators.”

—Dr. Walter Koroshetz

Dr. Walter Koroshetz, Director of NIH’s National Institute on Neurological Disorders and Stroke (NINDS), presented during the Forum’s Medical Research Panel. Dr. Koroshetz spoke about the NINDS Strategic Plan and sleep disorders research funded by NINDS. He also shared some funding opportunities for sleep disorders research.

We are funding a variety of sleep research, including a program on school-based health centers for children.”

—Dr. Rina Das

Dr. Rina Das, Scientific Program Director at NIH’s National Institute on Minority Health and Health Disparities (NIMHD), presented during the Medical Research Panel.

It’s not surprising that we are at higher risk for virtually all disorders if we’re not sleeping in sync with our circadian clock.”

—Dr. Louis Ptáček

Dr. Louis Ptáček, Professor of Neurology at UCSF Weill Institute for Neurosciences, spoke on behalf of the Society for Research on Biological Rhythms (SRBR) during the Medical Research Panel. Dr. Ptáček spoke about advancements in circadian biology, and about future directions and opportunities in the field.

Our members are engaged in a number of activities to increase awareness about the importance of sleep and funding for sleep research.”

—Dr. Janet Mullington

Dr. Janet Mullington, Professor of Neurology at Harvard Medical School and Clinical Research Center Program Director at Beth Israel Deaconess Medical Center, spoke on behalf of the Sleep Research Society (SRS) during the Medical Research Panel. Dr. Mullington shared about SRS’ advocacy efforts and legislative priorities.

I’ve made the adjustments, and I’m grateful that it’s let me get here and slowly achieve my goals, but it does feel like a tradeoff at times.”

—Farah Hasan

Farah lives in Ontario and is a new graduate student in health science education research. She was diagnosed with idiopathic hypersomnia at age 21 and is now a trained speaker with Project Sleep’s Rising Voices of Narcolepsy program. As a speaker, Farah hopes to demystify the symptoms of sleep disorders like idiopathic hypersomnia and narcolepsy.

Because of the emerging evidence on how sleep supports physical and mental health, we are creating a special issue of our publication, Preventing Chronic Disease, specifically on sleep.”

—Dr. Craig Thomas

Dr. Craig Thomas, Director of the Division of Population Health at CDC’s National Center for Chronic Disease Prevention and Health Promotion, kicked off the Special Emphasis Panel: Public Health and Screening to share about CDC’s commitment to sleep health and sleep disorders as major public health concerns in the United States.

We successfully implemented a novel Sleep Vital Sign in primary care clinics. Applying the Sleep Vital Sign increased the rate of identifying potential sleep disorders.”

—Dr. Dennis Hwang

Dr. Dennis Hwang, Pulmonologist, Primary Investigator for Sleep Vital Sign Study, Kaiser Permanente Sleep Medicine and Department of Research and Evaluation, spoke on the Public Health and Screening Special Emphasis Panel. This panel explored the current status of sleep disorders screening tools and how advocacy may play a role in advancing these tools in the future.

A potential solution came from our need to have a rapid screener for research studies.”

—Dr. Michael Perlis

Dr. Michael Perlis, Associate Professor of Psychiatry and Nursing, and Director of Behavioral Sleep Medicine Program at University of Pennsylvania, spoke on the Public Health and Screening Panel. Dr. Perlis presented on the need for a brief, comprehensive sleep disorders screening tool and introduced the checklist his team has developed, the Sleep Disorders Symptom Checklist-25.

In primary care, we are an ecosystem of testing and innovation.”

—Dr. Andrew Philip

Dr. Andrew Philip, Clinical Lead and Senior Director of Partnerships for Primary Care Development Corporation (PCDC)’s Clinical and Quality Partners team, spoke on the Public Health and Screening Panel. Dr. Philip talked about PCDC’s work on addressing sleep in integrated primary care and offered insight into how policy can advance these screening efforts.

Telemedicine has started. It can’t go back. We’re not quite sure how to go forward, but we’re working on the answer.”

—Gary Ewart

Gary Ewart, Chief of Advocacy & Government Relations at American Thoracic Society (ATS), spoke on the Healthcare Provider, Telemedicine, Coverage and Access Panel. He spoke about the significant barrier to care presented by regulation of CPAP use, and the importance of telemedicine for access to care.

Clearly expanded coverage of telemedicine during COVID-19 has been a huge help to patients, and we feel strongly that this needs to be permanent.”

—Dr. Raman Malhotra

Dr. Raman Malhotra, Professor of Neurology and Program Director of the Sleep Medicine Fellowship at Washington University School of Medicine and  2021-2022 President of the American Academy of Sleep Medicine (AASM), spoke on behalf of the AASM on the Healthcare Provider, Telemedicine, Coverage and Access Panel. Dr. Malhotra spoke about key telehealth policies and current barriers to care.

Step Therapy is an algorithm used by the insurance companies that doesn’t take anything into account about the individual.”

—Hannah Lynch

Hannah Lynch, Associate Director of Federal Government Relations and Health Policy at the National Psoriasis Foundation, Co-Chair of Safe Step Coalition, spoke on the Healthcare Provider, Telemedicine, Coverage and Access Panel. Hannah spoke about the Safe Step Coalition’s important efforts to advance the Safe Step Act, which aims to create a clear and transparent process for patients and physicians to be able to request exceptions to insurers’ step therapy protocols.

Behavioral sleep medicine is integral in treating insomnia and lowering healthcare costs.”

—Sonia Smith

Sonia Smith, APRN, member of Society for Behavioral Sleep Medicine (SBSM); Owner of Emerald Coast Pediatric Sleep Consultants; Pediatric Nurse Practitioner with Sacred Heart Medical Group, spoke on behalf of the SBSM on the Healthcare Provider, Telemedicine, Coverage and Access Panel. Sonia spoke about the effectiveness of cognitive behavioral therapy approaches in managing chronic insomnia and other sleep conditions and current barriers to broader implementation.

Our challenge at the current time is: how do we promote young researchers, how do we help people do those start-up research programs that are needed to generate enough information to successfully apply and win an NIH grant?”

—Rebecca King, Hypersomnia Foundation

During the Community Perspectives and Priorities Panel, sleep advocacy organization leaders shared important insights from the front lines of working with patient communities and sleep advocates. This session featured fantastic presentations by:

• Alexandra Wharton, Board Member, Circadian Sleep Disorders Network
• Rebecca King, Board Member, Hypersomnia Foundation
• Amy Kant, Transition Director, Narcolepsy Network
• John Lopos, Chief Executive Officer, National Sleep Foundation
• Julie Flygare, President & CEO, Project Sleep
• Linda Secretan, Board Member, RLS Foundation
• Dr. Terra Ziporyn Snider, Executive Director and Co-Founder, Start School Later
• Tammy Smith and Anne Samarawickrama, Board Members, Wake Up Narcolepsy