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Wednesday, September 5, 2018

AWAKE Sleep Apnea Initiative Documents Life-altering Impacts of Sleep Apnea and Patients’ Priorities for Treatment

New report describes findings from survey of 5,630 patients and testimony at day-long meeting with FDA
Washington, D.C. – September 5, 2018 – A comprehensive report issued today by the American Sleep Apnea Association (ASAA) details the magnitude of human suffering, barriers to diagnosis and treatment, and unmet needs described by people living with sleep apnea and family caregivers. “Raising Voices for Progress in Treatment and Care” is based on first-person accounts conveyed at the June 8, 2018 AWAKE Sleep Apnea patient-focused medical product development meeting attended by 465 people (in person and by live webcast) and a Patient & Caregiver Survey that attracted responses from 5,630 adults of all ages from around the country. 
“This report, released as part of ASAA’s annual Sleeptember awareness events, is essential reading for anyone dealing with sleep apnea – diagnosed patients, symptomatic individuals and those at risk for the condition, family members, healthcare professionals, drug and device developers, researchers, and regulators. It is the most complete account of sleep apnea from a patient point-of-view in existence,” asserted Adam Amdur, ASAA’s chief patient officer. “The powerful testimonies delivered on June 8 and through the survey illustrate the good, the bad, and the ugly of the patient journey with sleep apnea; these testimonies also chart an advocacy agenda to address our community’s many and varied unmet needs.”
Key findings of the AWAKE Sleep Apnea Initiative, as detailed in the report, include:
·       Patients rated fatigue (80%) and daytime sleepiness (78%) as the top two symptoms with the most severe impact. Ratings by patients adherent to continuous positive airway pressure (CPAP) therapy were higher (fatigue – 81% and daytime sleepiness – 79%) than those not using CPAP (fatigue – 75% and daytime sleepiness – 75%) for these and other symptoms identified as having moderate to severe impact.
·       Barriers to diagnosis include low awareness of the condition among the public and medical professionals, lack of access to specialists and sleep testing centers, misperceptions and stigma related to the condition and its treatment, burdensome testing procedures, and financial constraints. Many participants described being symptomatic for years – or decades – before getting diagnosed.
·       Obstacles to effective therapy include problems associated with diagnosis as well as uncomfortable or inconvenient design of therapeutic devices, side effects and other challenges tolerating treatments, inadequate or punitive insurance coverage policies, misdiagnosis and/or other medical complications.
·       CPAP was the most-cited therapy in response to the open-ended survey question, “What have you found that helps the most,” yet there were many caveats and persistence was required to determine and maintain effective machine settings, find a well-fitting mask and good seal, and to properly clean and maintain equipment. More initial instruction, ongoing support, and better customer service were sought by many CPAP-treated individuals. 
With 5,630 responses, the AWAKE Sleep Apnea survey is the largest undertaken in conjunction with a patient-focused medical product development meeting conducted in collaboration with FDA. ASAA used a combination of traditional and social media channels to attract respondents to the 32-item survey; 12 partnering organizations helped extend outreach. ASAA also partnered with Evidation Health to deploy the survey within Evidation’s consumer health “Achievement” platform. Fifty-six percent (56%) the survey responses came through ASAA and partnering nonprofits and the remainder came through Evidation. In general, respondents via the Achievement platform were younger, less severely affected, less likely to have been diagnosed by a physician, and were using fewer medical treatments. Where significant differences were found between the two cohorts, they are reflected in the report.
The AWAKE Sleep Apnea education and empowerment initiative launched on April 24, 2018 in preparation for the June 8 meeting with FDA officials. It was the first campaign of its kind for sleep apnea. ASAA applied to host the meeting as part of FDA’s expanded patient engagement efforts to help regulators understand what individuals living with various conditions experience, which symptoms present the most difficulty, which treatment benefits matter most, and how they perceive potential risks and harms associated with treatment. The report and survey results will be submitted to FDA’s Patient Experience Resources archive. Additional data analyses will form the basis of manuscripts submitted to peer-reviewed publications.
Nearly 18 million Americans of all ages have sleep apnea, a disorder that causes people to stop breathing during sleep and leads to daytime sleepiness, poor productivity at work or school, and increased risk of accidents on the job and on highways, consequences described in vivid detail in the report. The Centers for Disease Control and Prevention estimates that 50-75 percent of adults with symptoms of sleep apnea have not discussed their concerns with a physician. Left untreated, sleep apnea can have severe health ramifications and is linked to increased rates of high blood pressure, heart attack, stroke, diabetes, and other serious conditions, as meeting and survey participants described.
Founded in 1990, the American Sleep Apnea Association (ASAA) is a patient-led, nonprofit organization dedicated to the promotion of sleep health through research, advocacy, and education. To read the report, visit https://www.sleepapnea.org/awake-sleep-apnea-initiative/. For more information about Sleeptember awareness activities and other sleep health resources, visit www.sleeptember.org

Saturday, September 1, 2018

September is “Sleep”tember

Mark your calendars, because September is “Sleep”tember, and ASAA is planning a month full of interactive challenges, great stories, and tips to give you a great night’s sleep!  Join us on our Sleeptember website (
www.Sleeptember.org), or follow us on Facebook, Twitter, and YouTube to join the fun! 

For our 4th annual Sleeptember, ASAA will feature the “Portraits of Sleep Apnea” series, which will bring patient experiences of sleep apnea to life through videos, audio recordings, written stories, and still portraits.  See photographs of everyday people living with sleep apnea, taken by renowned patient advocate and photographer Gilles Frydman. Every day will feature a new portrait and story!

Plus, if you join us on September 5th, you will be among the first people to see the results of our landmark Patient & Caregiver Survey.  Over 5,600 people participated in this patient-driven original research, answering 31 questions about what it’s like to live with sleep apnea.  Some of the results may surprise you!

Watch video interviews of people sharing their sleep journeys.  Tell us YOUR story!  Challenge your friends and family to adopt healthy sleep habits.  Participate in interactive webinars that address sleep health.  Register for the SleepHealth Mobile App – you will learn more about your personal sleep patterns while contributing to the study of sleep apnea!

There’s lots to do, and we want you right there with us!  So get ready for the big kick-off on September 1, 2018 at www.Sleeptember.org, and keep coming back every day to see what’s new! 


We can’t wait to see you in Sleeptember – until then, have a great night’s sleep!

Tuesday, May 29, 2018

Sleep Apnea Patients Seek to Inform and Accelerate Medical Product Development


                                                                                                


Contact: Theresa Shumard
Phone: 610-781-1692
mothert@sleepapnea.org

Sleep Apnea Patients Seek to Inform and Accelerate Medical Product Development
June 8 meeting will highlight unmet medical needs & treatment expectations from patient point-of-view

Washington, D.C. – May 29, 2018 – People from across the U.S. who are living with sleep apnea will gather in College Park, Maryland, on June 8, 2018 to share what it’s like to live with sleep apnea with FDA regulators, drug and medical device developers, and researchers. This meeting is part of a series started by FDA in 2013 to inform regulatory decision-making. It will feature discussions on the path to diagnosis, impacts on daily living, symptom management, and treatment expectations and adherence.
Hosted by the American Sleep Apnea Association (ASAA), the June 8 meeting caps the AWAKE Sleep Apnea initiative, an education and empowerment initiative launched in April. Participants on-site and viewing via a live webcast will have the opportunity to offer their perspectives through live polling questions and moderated discussion. Dialogue at the meeting will be shaped by interim results of an online Patient & Caregiver survey that has already attracted more than 2,220 responses and remains open for additional responses through June 29, 2018.
Nearly 18 million Americans of all ages have sleep apnea, a disorder that causes people to stop breathing during sleep, sometimes hundreds of times each night. Survey respondents reported high rates of severe to moderate fatigue (80%), daytime sleepiness (77%), and cognitive problems (49%), even among those who faithfully use continuous positive airway pressure devices at night, a centerpiece of sleep apnea treatment. Sleep apnea can have severe health consequences and is linked to increased rates of other serious conditions. In fact, 56% of survey respondents reported having high blood pressure; 28% indicated they have diabetes, and 25% have depression or another mood disorder. Sixty-two percent (62%) expressed that their greatest concern about living with sleep apnea is its long-term impact on their health and lifespan.
Patient panelists include women and men from Los Angeles, Brooklyn, Las Vegas, Colorado Springs, Virginia Beach, Key Biscayne, Portland, Maine, and San Juan, Texas. ASAA’s chief patient officer Adam Amdur will make introductory remarks and board-certified sleep specialist Dr. Shelley Berson will provide an overview of diagnosis and treatment. To close the day, FDA’s Kathryn O’Callaghan, associate director for strategic programs at the Center for Devices and Radiological Health, will summarize the input received from patients and will describe how FDA uses such information in the assessment of benefits and risks, evaluating clinical trial designs, and safety surveillance. View the meeting agenda here. 
A full report on patient perspectives shared at the AWAKE Sleep Apnea Patient-Focused Medical Product Development meeting, including through the live polling questions and Patient & Caregiver Survey, will be submitted to the FDA and released to the public later this summer.
To register for the June 8, 2018 meeting or for more information about the AWAKE Sleep Apnea www.awakesleepapnea.org.