Quote:

The information below is taken from the newsletter of the Elk Grove Village, Illinois A.W.A.K.E. group. On February 29, 1996, Dr. William Dement stopped in Chicago overnite and was able to stop by the A.W.A.K.E. meeting and speak to the group. This article is the report of his remarks.

Our first speaker for the evening was Dr. William C. Dement, M.D., Ph.D. He was introduced by Lauren Krivis of Apria Healthcare. Dr. Dement is considered the "father" of modern sleep medicine. He earned his M.D. and Ph.D. from the University of Chicago, where he first began to study sleep. In 1963 he became the director of the Stanford University Sleep Research and Clinical Programs and continues in that post today. He was Chairman of the National Commission on Sleep Disorders Research from 1990-1992, a commission chartered by Congress. He is the author of the definitive textbook on the diagnosis and treatment of sleep disorders and has written or co-authored more than 500 scientific publications. He was the founding President of the American Sleep Disorders Association, serving from 1975-1987. He is currently President of the Coalition to Wake Up America, a grassroots advocacy network of sleep disorders patients, sleep professionals, and concerned citizens.

Dave Hargett has agreed to serve as the Patient Coordinator for the State of Illinois, as part of the Wake Up America campaign. During some recent phone conversations with Dr. Dement, Dave became aware that Dr. Dement was flying through Chicago on the date of our meeting and asked Dr. Dement to stop by to speak to us about Wake Up America, and what we can do, as patients and spouses, to help make a difference.

Dr. Dement began by mentioning that he had spoken to over 50 A.W.A.K.E. groups nationwide, but he found our group to be perhaps the most impressive he had spoken to. He said he had gotten to know and respect Lauren Krivis from working with her and that he was looking forward to a productive association with Dave Hargett. Dr. Dement used slides to advance his talk, but we'll try to recap his remarks as completely as possible.

Dr. Dement claims to be the first man on earth to study sleep all through the night, minute by minute. He began doing this in 1958, using his wife as his first study subject. In 1970 he opened the first fee for service program in the world for the diagnosis and treatment of sleep disorders. Up to that point, the practice of medicine ended when the patient fell asleep! The things that happened in the night weren't known. Patients became coming to the center because of the center's work with narcolepsy, but by 1971 it was clear that obstructive sleep apnea (OSA) was the root cause of the sleepiness of most of their patients.

This entire concept of OSA was new to the medical field, so they put on a training seminar for the medical profession in November of 1972. At the time, the treatment of choice was a tracheostomy, which meant placing a breathing tube in the throat and bypassing the normal airway. Dr. Dement showed us a photo of one of their early patients, a medical doctor, who received his "trach" in 1973. This doctor had fallen asleep while examining a nude female patient, so he knew something was wrong. He was experiencing cardiac arrhythmia, high blood pressure and excessive sleepiness. After surgery, he experienced an almost miraculous recovery and is still practicing today. This type of experience is what we can do with patients that we can identify and treat.

Both Nasal CPAP and the UPP surgical treatments arrived around 1981, and the tracheostomy soon fell into disuse as a treatment, partly because only about 50% of the patients for whom it was recommended actually had the treatment. Dr. Dement's experience from those early patients is that those with untreated severe OSA have a life expectancy of less than 10 years.

According to Dr. Dement, there are studies that indicate there are 30 million Americans with definable sleep apnea. There are 10 million who need treatment. For half of those - 5 million - it's an emergency situation. These are the folks with over 50 apneas per hour, who can expect severe sleepiness, cardiac problems, etc. They are on a downward spiral unless someone recognizes their condition and does something about it The shame of it all is that there are effective treatments, but they are not widely available.

He mentioned a video that he often shows, titled "The Miracle of Treatment", which some of us saw last fall. It includes two interviews with a man, one pre-diagnosis, pre-treatment, and a follow up interview after he was diagnosed and treated for OSA. His sleep team had visited a primary care doctor's office and offered overnight sleep studies to the five patients in the office. Two of the five had severe OSA. The gentleman mentioned in the video had been treated for high blood pressure for ten years and depression for eight years, and had spent nearly $10,000 on medications alone. He had also lost his job. After diagnosis and treatment, he was a new man - and very perturbed with the medical profession.

This is just one episode indicating that while there is a large body of accumulated knowledge, it has not been disseminated to the public. Why is this the case? The answer is simple: No Education. To quote Dr. Dement: "It is an abomination that this field is not solidly in the medical school curriculum". (Dr. Frankie Roman, a colleague of Dr. Dement's, has indicated that the average physician receives less than 2 hours of sleep medicine training in four years of medical school!).

Dr. Roman did a survey of Congress, and 82% of the respondents indicated they had never heard of OSA. An even better example of the national ignorance of this condition comes from the National Commission on Sleep Disorders Research, which analyzed 10 million computerized diagnosis records and found only 73 diagnoses of OSA.

At an A.W.A.K.E. meeting in North Dakota, Dr. Dement asked the patients how many years they had suffered before diagnosis. The average of the 63 patients was 10 years. That's over six centuries of man-years that they suffered unnecessarily and there were 6 possibly preventable heart attacks and 3 possibly preventable strokes.

The leading cause of heavy truck accidents is falling asleep at the wheel. In a study at one trucking company in 1991, no one there, from manager to driver, had ever heard of OSA, but 87% of the truckers tested showed at least mild apnea.

Dr. Dement studied the patients going through the Stanford primary care group just recently and found that even there, in a practice aware of apnea, 25% of the males and 20% of the females who had apnea and needed treatment were slipping through without the appropriate diagnosis.

In Dr. Dement's candid opinion, there is still inadequate public and professional awareness of sleep disorders. It is his belief that "Unhealthy sleep remains America's largest, deadliest and most costly health problem." By his best estimate, there are about 650,000 CPAP machines in use today, which is far less than the 5 million "emergency" patients, or the 30 million with some level of apnea. Who cares about the unrecognized victims? No one. That's a public health problem. Only about 5% of the people with a chronic sleep disorder have been diagnosed. The other 95% are still suffering, unknowing, undiagnosed, untreated. Yet their treatment could reduce the medical costs over the long run.

As part of the National Commission's studies, there was a public hearing chaired by Senator Mark Hatfield of Oregon. At that hearing, Senator Hatfield was convinced of the need and became committed to the sleep disorders issue. In 1993 he initiated a bill to create the National Center for Sleep Disorders Research as part of the National Institutes of Health. The Center was created and one of its main missions is to create the public and professional awareness of sleep disorders and their impact on society. Unfortunately, the NCSDR has no designated funding. "The knowledge and benefits that should flow freely to all of us are backed up behind a huge dam of bureaucracy," says Dr. Dement, who states that he now thinks of himself as a Dam Buster. "How can we blow up the dam?", he asks. Senator Hatfield, who is retiring from the Senate soon, is meeting with leaders in the sleep community this month to help craft a program that we can all support.

Support from us, the patients and spouses, is important. He pointed out the success of the AIDS activists, who are relatively small in number, but highly visible. They have been there, lobbying with the members of Congress by visiting, writing, calling, faxing, whatever it takes. In the process they have captured nearly 20% of the health research budget. Of the $11.8 billion in funding for the National Institutes of Health, $2.3 billion is now designated for AIDS research. Just a few people made a HUGE difference!

Today in the sleep community, we are dealing with sleep absenteeism, not sleep activism. We don't have a public mandate, even though there are perhaps 50 million potential activists. Members of Congress aren't aware of the needs because their constituents haven't made them aware of these needs.

The way it should work is this: We, the sleep activists, begin the lobbying effort and made our legislators aware of the public mandate to work on sleep disorders problems. We must deliver our message that there are grave problems here and give them some recommended solutions. Congress then should move to provide the necessary resources and authorization to the National Sleep Center and other agencies. These groups will provide national leadership and coordination through grants and partnering with private agencies to create a vastly improved awareness of sleep disorders in the workplace, in the healthcare and health insurance industries, and among the members of the general public. This will lead to vastly improved diagnosis, treatment and cures, as well as prevention and coverage.

We as patients have to get upset with the current state of affairs. If you feel you've lost ten good years, aren't you mad as hell about it? Our job is to deliver the message. With the 30 million folks with sleep apnea, the 10 million with Restless Leg Syndrome, the millions with chronic insomnia, we have a huge potential. That potential public mandate needs to be made visible.

YOU can make a difference! Speak out to save lives! Call or visit your Congressman or Senator and tell him about your concerns. Write your legislators! Fifty letters on one topic can be a tidal wave of sentiment in a congressional office. Congressman John Porter of Illinois is especially important, as he is chair of the House Appropriations subcommittee on Health, but all of the Illinois delegation is important.

Another way to help is to participate in the Great American SleepWalk on May 29th in Washington, DC. Several professional sleep groups are meeting in DC and are asking patients to join them in honoring Senator Hatfield for his efforts on sleep policy and to lobby the Congress for more support for sleep disorders awareness. If you can't be in Washington, plan to visit your local congressional office on that day. Participate! (Dave Hargett will keep you abreast of plans for the Illinois area)

Dr. Dement mentioned a recent patient who had heard of sleep apnea from television, but it took five years for him to get treatment, working his way through the maze of medical practice. No one should die from obstructive sleep apnea because they are not diagnosed. No one should fall asleep at the wheel because of lack of treatment. You CAN make a difference! Wake Up America needs your help!