People for Quality Care is pleased to welcome a new contributor to the Sleep Journal - the American Sleep Apnea Association (ASAA). The ASAA is one of the nation’s leading organizations in promoting quality sleep and supporting those with sleep disorders. The organization’s vast knowledge of sleep coupled with their passion for service will undeniably amplify the blog’s capability to provide more information for those interested in sleep as a matter of health, science and career. (If that’s you, subscribe here)
American Sleep Apnea Association: Enhancing the lives of those with sleep apnea
Over the coming months and years, I will share with you my perspective and views on current developments related to sleep health, sleep disorders, public health and other things that may be of interest to you.
As someone that has been involved national research, advocacy and public education programs related to sleep health for 20 years, I have a deep understanding of the sleep community and what is needed to propel sleep medicine into the mainstream of public health and safety. I am the son and father of people with sleep apnea and have been a strong patient advocate in both my personal and professional life while working at the National Sleep Foundation and now as president of the American Sleep Apnea Association (ASAA).
The ASAA is in a unique position to advocate for patients and caregivers and empower them to have a greater say in their treatment and in directing future research on new treatments and cures.The best thing that the ASAA has ever done was to remove physicians from its board two years ago and become a truly patient-led advocacy organization. This removes the inherent conflicts that exist in the professional sleep medicine field and allows us to advocate for what’s best for patients without barriers.
The modern day healthcare system requires patients to be their own best advocates as they navigate diagnosis, treatment options and insurance payments. The ASAA believes that patients should also be at the table when companies develop new products, professional groups develop new guidelines, and researchers develop research grants and programs.
This is all necessary because in our view, the sleep medicine field has failed us in many ways. Much more needs to be done to identify patients with sleep disorders, especially sleep apnea, and get them properly treated and on the road to better health. We have heard for 30 years or more that 80% of people with obstructive sleep apnea are still undiagnosed and untreated. For those that are diagnosed, only 50% stick with CPAP for the first year or so. Those numbers have to increase greatly beyond a year or two, but no one really knows because sleep centers don’t follow up with those patients that drop out of the system.
However, we strongly believe that these people are still in the healthcare system, but identified as patients with heart disease, diabetes, hypertension, depression, or stroke. That’s if they are lucky enough not to die in a fall asleep automobile crash or of a heart attack. These all have to be recognized as great failures in promoting public health and safety. It’s up to patients to direct their own destiny through directing advocacy, education and funding our own research programs.
The ASAA has put a wonderful team of people that have been successful in business, startup ventures, medical practices, research programs and advocacy that are working together to expand our national programs and empowering patients. Simply put, this is not the same old ASAA. We want to be the true voice of patients and stakeholders.
We don’t see ourselves as a sleep organization, but a public health organization with something to prove. We will expand our focus to beyond sleep apnea to include insomnia and other sleep health issues as well and work with partners to connect the dots between sleep and other comorbid health conditions such as cancer, heart disease, mental health, pediatric health among other things.
We want to build an army of patients, caregivers, physicians, researchers, and volunteers that want to advocate for greater recognition of sleep as a healthy behavior, diagnosis and treatment of sleep disorders and the mitigation of the consequences of sleep loss in the workplace, classroom and on the highway.
The ethos of the new American Sleep Apnea Association is “patient led…and patient supported.” Come join the fun. Learn more about ASAA at www.sleepapnea.org, www.sleeptember.org.
President, American Sleep Apnea Association
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