Sleeping Beauty: Who Can Awaken Her?

Submitted by Jerry on Mon, 06/25/2007 - 19:44

We are a nation asleep. Millions of Americans don't get enough restful sleep. If life were like a fairy tale, sleep disorders including sleep apnea would not still be a major public health problem. If the wonders of medical science were applied by physicians, if the public was informed and motivated, and if a dysfunctional health care system was not getting in the way, the magical "kiss" of healing would already have awakened us.

I believe a new strategy is needed. The problem is not with knowing what to do, it is the lack of a national will to act. People with sleep disorders, especially those who have received effective treatment, are a potential resource for change and should be enlisted as advocates and educators.

From the perspective of public health, the need is great. Scientific studies of prevalence (an estimate of how many people in the population have a condition) show that "....roughly 1 of every 5 adults has at least mild [obstructive sleep apnea] OSA and 1 of every 15 has at least moderate OSA." In the United States, according to ResMed, a manufacturer of treatment devices, this translates to 45 million adults of whom 80% have not been diagnosed and treated. And many of those who have been diagnosed are unable to receive or maintain effective treatment.

Unfortunately, we have a long way to go. Reading the gloomy observations and conclusions of the Institute of Medicine, and even giving full credence to their excellent recommendations and proposals, I do not see that magic kiss being realized in the near future. Perhaps what is mising is a public outcry that could create the political will to allocate resources and to change outmoded systems. I believe that, if we could mobilize the people with sleep problems, there might be a solution.

In 1972 I began to awaken from the daze caused by sleep apnea. I believed that if people and physicians knew how to recognize and diagnose sleep apnea and other sleep disorders, society would quickly recognize the benefits (health, well being, savings in healthcare costs) and allocate the resources and the energy to eliminate the scourge of untreated sleep disorders. Unfortunately, many of the observations and conclusions by the Institute of Medicine in 2006 are essentially the same as I and many others have noted since 1972.

Since 1972 I have been privileged to work with leaders in the field of sleep in educating people about sleep apnea and teaching them how to overcome this problem. I co-authored and published a book and created a web site. These publications were premised on the idea that people with a chronic condition like sleep apnea need to manage their health care in collaboration with their physicians. Many others--scientists and clinicians with impressive credentials, as well as many organizations and industry, as well as a growing community of sleep medicine professionals--have worked to educate and inform the public and the medical community. Yes, there has been progress, and yes, sleep disorders, especially sleep apnea, is a rapidly growing industry.

But what remains? Here are just a few salient problems noted in the 2006 report by the authoritative Institute of Medicine of the National Academies, Sleep Disorders and Sleep Deprivation: An Unmet Public Health Problem.

* Most people with a treatable sleep problem will not be diagnosed. Physicians cannot diagnose and treat a condition if they have not been trained. Only about 63% of medical schools include sleep medicine, and even here they only devote an average of about 2 hours to the subject.
* There are not enough resources to treat all the people with sleep disorders. Although millions of people with sleep disorders remain undiagnosed, there are only about 1,300 sleep laboratories, and these are not located for the convenience of people with sleep disorders. An overnight polysomnogram study is the standard for diagnosis of sleep apnea. Only 427 studies per 100,000 population are done in the US annually, while at least 2,310 are needed to meet the need. Methods for diagnosing people at home using reliable diagnostic technologies either do not exist, have not been proven, and have been resisted by those favoring traditional methods.
* The medical profession as well as the public are poorly informed about sleep problems. Up to 40% of the population is affected by sleep loss and daytime sleepiness. Up to 90% of people with sleep apnea remain undiagnosed. However, while TV often serves to raise awareness of some public health issues, fatigue, snoring, and apnea continue to be portrayed as funny in national programming. Very little resources have been available to meet the need for education, and very few campaigns have been done.
* Many people with sleep apnea, even after they have been diagnosed and have started treatment, do not get full relief and may abandon treatment. Sleep disorders are chronic conditions and require long-term management. The current diagnostic plus treatment paradigm is not an effective way to manage sleep disorders; experts advocate shifting to a chronic disease management paradigm.

As I write this, in 2007, I believe a new strategy is needed. The problem is not with knowing what to do, it is the lack of a national will to act.

With respect to the proposals of the Institute of Medicine, they represent essentially the view of the professional community. The proposals focus on changes to professional education and practices, increased funding for training and research, as well as public education. However, a key resource is ignored.

People with sleep disorders, especially those who have received effective treatment, are a potential resource and should be enlisted as advocates and educators. Imagine the impact that a feedback loop of treated patients could have on the health care system, politicians, and the public. If every awakened sleep patient were to tell their doctors and their elected representatives to pay more attention to sleep disorders, this could be a tremendous engine for change. Perhaps even the kiss that awakens.

Jerry Halberstadt

References:

Committee on Sleep Medicine and Research, Institute of Medicine of the National Academies, Sleep disorders and sleep deprivation: an unmet public health problem. Washington: National Academies Press.

Young T, Peppard PE, Gottlieb DJ. Epidemiology of obstructive sleep apnea: a population health perspective. Am J Respir Crit Care Med 2002;165(9):1217-39. PMID: 11991871 http://ajrccm.atsjournals.org/cgi/content/full/165/9/1217

www.ResMed.com, "Key Research"

T. Scott Johnson MD, William Broughton, MD, and Jerry Halberstadt; with contributions by B. Gail Demko, D.M.D. Forewords by Carl E. Hunt, M.D., Director, National Center on Sleep Disorders Research, NHLBI, NIH, William C. Dement, M.D., and Colin E. Sullivan, M.D. Sleep Apnea--the Phantom of the Night, Peabody MA: New Technology Publishing, Inc., 2003. To buy this book, please go to http://www.healthyresources.com/sleep/apnea/phantom/orders/index.html

Original article: http://www.healthyresources.com/editorials/thekiss/