2021 Sleep Advocacy Forum Educates and Elevates Sleep Field

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On Oct. 18-19, 2021, Project Sleep was thrilled to facilitate the second annual virtual 2021 Sleep Advocacy Forum, rallying together a remarkable group of policy makers and sleep advocates to share information and coalesce around areas of common concern.

On Monday, Oct. 18th, the Sleep Advocacy Forum‘s Educational Sessions covered an array of timely topics from medical research to public health and patient care issues. See the full agenda. This year’s special emphasis panel focused on Public Health and Screening. Another huge highlight was Farah Hasan’s powerful story of living with idiopathic hypersomnia.

On Tuesday, Oct. 19th, the Executive Session brought together sleep-related professional societies and advocacy organizations to discuss community priorities. Participating organizations included:

Watch Videos

Today, we are thrilled to share videos from the 2021 Sleep Advocacy Forum below and on YouTube. Please watch and share!

Congressional Update from the Sleep Health Caucus Co-chairs:
Congresswoman Zoe Lofgren and Congressman Rodney Davis

Together we can push for good policies to help fund the research and initiatives we need to prioritize sleep health, and in turn better overall health.”

—Congressman Rodney Davis

On Oct. 18, 2021, the Sleep Advocacy Forum kicked off with remarks from Congressional Sleep Health Caucus Co-chairs, Congresswoman Zoe Lofgren of California’s 19th District and Congressman Rodney Davis of Illinois’ 13th District.

Welcoming Remarks: Julie Flygare, JD, President & CEO of Project Sleep

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.

National Center on Sleep Disorder Research 2021 Update: Dr. Marishka Brown

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.

National Institute on Neurological Disorders and Stroke 2021 Update: Dr. Walter Koroshetz

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.

National Institute on Minority Health and Health Disparities 2021 Update: Dr. Rina Das

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.

Society for Research on Biological Rhythms 2021 Update: Dr. Louis Ptáček

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.

Sleep Research Society 2021 Update: Dr. Janet Mullington

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.

Living with a Sleep Disorder: Farah Hasan

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.

CDC’s Division of Population Health 2021 Update: Dr. Craig Thomas

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.

Sleep Vital Sign Study: Dr. Dennis Hwang

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.

Sleep Disorders Symptom Checklist-25: Dr. Michael Perlis

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.

Primary Care and Sleep Screening: Dr. Andrew Philip

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.

American Thoracic Society  2021 Update: Gary Ewart

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.

American Academy of Sleep Medicine 2021 Update: Dr. Raman Malhotra

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.

Safe Step Coalition 2021 Update: Hannah Lynch

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.

Society for Behavioral Sleep Medicine 2021 Update: Sonia Smith, APRN

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.

Community Perspectives and Priorities

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:

Many Thanks!

Huge thanks to this year’s speakers and participating individuals and organizations. We are so encouraged by the growing momentum in the sleep advocacy space!

Special thanks to Avadel PharmaceuticalsJazz PharmaceuticalsHarmony Biosciences, and Takeda Pharmaceuticals for generously supporting the second annual Sleep Advocacy Forum. Likewise, thank you to our colleagues at the Health and Medicine Council for their professional guidance and policy expertise. We are looking forward to the 2022 Sleep Advocacy Forum already!

Become a Sleep Advocate

You can take part in advocacy efforts to make a huge impact! To receive time-sensitive “Action Alerts” with simple instructions to take action quickly, sign up for e-updates here.

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