The End of Sleep Medicine (Part 4)

 "You've come a long way baby" Virginia Slims cigarette tagline ~ circa 1968

Nearly five years since I have put pen to paper (so to speak) regarding the "end" or goal of sleep medicine. During that time I have, mostly quietly watched, the (r)evolution of the field.  I thought to provide some reflections on a field of medicine that was my professional life for 10 years. I would like also to thank again those who were my teachers and colleagues in the pursuit of helping those with the chronic health condition - #obstructive sleep apnea (OSA) - #sleep disordered breathing.

I recently had the occasion to visit a #CVS near me and found much to my surprise (though not really) the following displays

My earliest memories of serving as the executive director of the American Sleep Apnea Association was attending as an exhibitor at the #American Thoracic Society's 2004 International Conference in Orlando Florida. It was there I first met many of the men and women who would be my mentors. It was there I also met many of the reps of the device manufacturers #Resmed, #Respironics (now part of #Phillips Healthcare), #DeVilbiss, and #Fisher &Paykel.

While I was setting up the booth I had two encounters that have stayed with me. First was a woman working with the company setting up the exhibit hall. She saw the sign and stopped to tell me how her husband has #OSA. She lay beside him in the bed with her hand on his chest to make sure he was still breathing. This was my first encounter with sleep apnea - the first of what would be many during my tenure.

The second conversation I had was with a vice president for sales with #ResMed the number 1 or 2 in sales of #Positive Airway Pressure devices or CPAP.  I remember the conversation as if it was yesterday and these two images from CVS moved it to the front of my mind.  #Ron Richards said to me in five years you will be able to get these devices over the counter. If they work for you keep it (and use it) and if not bring it back. Like his boss, #Peter Farrell was fond of saying the only way one of these can hurt you is if it falls on your foot.

It took longer than five years and there are likely still a couple of hoops to jump through when it comes with the device, but at least when it comes to the supplies they are available when needed.

A second meaningful experience was the first time I provided testimony before a committee of  #Medicare regarding the use of #home sleeping testing (HST) for the diagnosis of #obstructive sleep apnea. This led to the publication of an open letter in the #Journal of Clinical Sleep Medicine.  It would be some years before the sleep medicine community would accept that #HST would not decrease the number of people seeking treatment for OSA and there would always be cases where the use of #HST would not be indicated. 

One of the many companies vying for a portion of the #HST market was a company using a different modality of measuring the incidence of pausing in breathing. #Itamar does not use the limitation of airflow into the lungs, something the pulmonary sleep medicine physicians were less inclined to accept as an accurate measure of disease. Without getting into the relative merits of the two modalities. #Itamar's technology  Here is an explanation of how this modality works.

Perhaps more important an alternate diagnostic modality was this technique engaged a medical community that heretofore had been reluctant to engage - cardiologists.  It is well known that untreated OSA has significant consequences on the cardiovascular system.  As far back as 2008 in the journal Circulation, there was the recognition that untreated sleep-disordered breathing is a driver of heart disease.  Perhaps the Itamar WatchPat technology spoke to cardiologists in a way ResMed Apnealink did not.   The important point here is cardiologists seem to be more engaged than previously.

Another memory - a well-respected sleep medicine physician would frequently say diagnosing sleep apnea as was so easy the janitor at the hospital where she practiced could tell just from looking a people in the waiting room whether they were positive for OSA.

The third and final meaningful experience happened at a medical conference where the ASAA was an exhibitor.  Our booth happened to catty-corner to that of the Board of Registered Polysomnographic Technologist (BRPST) and as it happened members of the American College of Chest Physicians happened to be passing by. The College had recently considered developing a certificate program for an allied health position for sleep, something akin to the Diabetes educator.  It was something subsequently they did not pursue.  But it was something I believed would be vital especially as #HST became more the norm than the exception.  I had always felt that successful treatment meaning being completely adherence to whatever therapy or treatment worked for the OSA patient was more important than how the diagnosis was arrived at. I knew both the representatives of ACCP and BRPST, and so I brought them together suggesting that BRPST take on the certificate program for what then call the sleep educator. It took some time and some hard work, but eventually, the CCSH program was born.

Perhaps it is fitting this blog post, the last in a series is published today on the 40th anniversary of the publication in the journal  The Lancet of Colin Sullivan's seminal research study 

Thank you to all my teachers, colleagues, and most importantly the patients who made this experience one I will always cherish.

The End of Sleep Medicine - (Part 3)

To quote Whitney Houston: "I believe the children are our future."

The problem of sleep-disordered breathing is epidemic, like diabetes, heart disease, and obesity. I would argue and have elsewhere in this blog that all three of those conditions can be attributed to, at least in part, the chronic intermittent hypoxia that occurs when the person sleeping is not getting air into their lungs.

For the most frightening development (if you can call it that) is the increasing occurrence of the conditions listed above in children.

The prevalence of sleep-disordered breathing is 3 to 5 percent among all children - this is scary!

One of the many challenges for the field of sleep medicine seeking to address this problem in a cost effective manner.  Of course, in lab polysomnography or even a sleep study done at home would provide more data reducing the possibility of false positives or false negatives, but the number of children at risk is too great and the cost in either case is prohibitive.

A study published in the ATS Blue Journal provides evidence that use of oximetry aided by computer analysis alone was sufficient to screen children to determine who needed an intervention.

This could be at a significant savings (90 to 95%) over what the cost might otherwise be. As described in the study this machine learning enabled test can provide an inexpensive test to anyone who has access to a smart phone.

An increased awareness about the importance of sleep particularly among children coupled with the ability to screen for sleep-disordered breathing cost effectively should, I would say must, incorporate this into to all pediatric practice.

The field (calling all Clinical Sleep Health Educators) has its work cut out for it to disseminate the availability of this technology to help insure there will be children in our future.

Again to quote Whitney Houston:  "It is the greatest love of all."

The End of Sleep Medicine (Part 2)

"You can have any color you want, as long as it is black." - Henry Ford

My earlier posts paint an uncertain picture about the future of sleep medicine as it relates to the diagnosis and treatment of obstructive sleep apnea. That said, I see that there are a number of inescapable realities. I have listed them below and included my thoughts about them. How the sleep medicine community chooses to deal with these realities and possibly others will likely dictate the future of sleep medicine.

Reality #1 - Obstructive sleep apnea (OSA), a chronic condition, is far more prevalent than originally imagined and is likely to become even more common due to the rising incidence of obesity and aging of the population. To call it an epidemic is no longer hyperbole.

The number of people suffering with sleep apnea varies depending on who you ask. But whatever number you believe, it is a very large getting larger.  And if you include children the figure are staggering. Something needs to be done to address the 80% who remain undiagnosed and the 50% who are nonadherence due to ineffective treatment.

Reality #2 - The consequences of untreated OSA are more than just reduced quality of life and excessive daytime sleepiness. The effects of OSA impact most, if not all, organ systems in the body.

Current medical research is showing connections between sleep apnea and other diseases, such as some forms of Cancer, Alzheimer's and ADHD in children.  These comorbid conditions arise in part from the chronic intermittent hypoxia that occurs during the apneic events. The connection with hypertension and other cardiovascular disease is solid and that alone warrants finding ways to prevent sleep apnea if possible or to treat it effectively to mitigate further injury.

Reality #3 - There is more  technology available to diagnose and treat OSA and will continue to increase in variety/sophistication in the coming years, including at some point a pharmaceutical intervention.

Diagnostic technology for “out of center testing” continues to improve and while it is unlikely to ever replace in-lab polysomnography insurance companies are now requiring a home test first to determine a diagnosis of OSA. Positive Airway Pressure therapy machines look less and less like medical devices and wireless communication contained in them is facilitating greater ease in monitoring adherence to therapy. Oral Appliance Therapy for mild to moderate OSA has evolved as well making it an acceptable first line treatment. Greater precision  for surgical options is improving the rate of success. Other therapies are in development as well to address the broad range of disease that present.

Reality #4 - The number of Board Certified Sleep Medicine Physicians is not increasing at rate to keep pace with the increasing number of people who need care.

The problem of a narrowing pipeline of physicians is also a problem in other specialities as well, including primary care. The need for appropriately trained allied health professionals, such as those Credential in Clinical Sleep Health to work with primary care and with sleep medicine specialists is great. These physician extenders are the key to getting the undiagnosed into treatment, and to insuring they are adherent. Dentists also have a role to play in screening patients for OSA and with appropriate training treating that portion that will respond to OAT.

Reality #5 - Deductibles and co-pays for health insurance coverage will be set at such a point now that many of the expenses associated with diagnosing and treating OSA will be out-of-pocket or using a health savings account.

There are a number of changes in how healthcare is delivered in the United States, among them is the financial participation required by the consumer. Affordability of diagnosis and treatment will play a role how, particularly those in safety sensitive positions like transportation, chose to proceed.

The future holds great possibilities for the field of sleep medicine, but success is contingent on a willingness to adjust to a changing landscape and to accept that there is plenty of work to go around. It is fair to say that the last sleep apnea patient is not walking through the door and that black is not the only color available.

The End of Sleep Medicine (Part 1)

"Rumors of my demise are greatly exaggerated" - Mark Twain

I believe the field of Sleep Medicine about to enter a golden age. 

There is a convergence of several occurrences that leads me to that.

First, people spend a lot time talking about their sleep, mostly how they don't get enough of it. The technology (i.e. smartphones) has now advanced to the point it can provide the tools for people to not only measure, relatively accurately, how much sleep they are getting but help improve the quality of their sleep.

Witness the success of the Kickstarter campaign that raised $1,000,000 in four days for the "Sense" device (http://www.theverge.com/2014/7/23/5927613/sense-sleep-tracker-is-a-glowing-sphere-that-watches-over-you-while-you-sleep) A device that takes all those sleep apps for the smartphone one-step better. Even the Positive Airway Pressure device manufacturer ResMed is getting involved with their introduction of the S+ device to monitor and improve sleep (https://www.keepyoursleep.com/#home) independent of treating sleep-disordered breathing.

Further evidence that many people are actively using sleep monitoring technology comes from Jawbone. Two recent news releases from them provide, what I believe to be the first publication using "big data" on sleep. The Jawbone Blog published the results of an analysis of sleeping patterns of tens of thousands of Jawbone wearers - worldwide. (https://jawbone.com/blog/jawbone-up-data-by-city/) They were able to discern which city's the most sleep, the least sleep and other characteristics. The second blog post from Jawbone was published after the earthquake in Napa California. (https://jawbone.com/blog/napa-earthquake-effect-on-sleep/) The graph shows the disruption in sleep depending on how close they were to Napa.

The second occurrence that leads me to believe that we are entering the golden age of sleep medicine is the amount of published research in the field. A recent search of the National Library of Medicine (www.pubmed.gov) on the terms "sleep disorders" and research resulted in more than 9600 entries, with the earliest being 1963. The pace of published research is accelerating with a doubling of the number of published items in just the last 10 years.

People everywhere are interested in sleep, improving it as much as possible through appropriate monitoring technology. The amount of research related to sleep is increasing at an exponential rate. 

Far from the demise, those involved in Sleep Medicine have much to do in terms of helping the public better understand the data from their smartphones and to build on the research currently underway to comprehend the mysterious, little-understood third of our lives.

The future is rich with possibilities.

Finally, improving sleep by diagnosing and effectively treating what may well the most common chronic sleep disorder, sleep apnea, has reached out beyond a limited number of specialists, primarily pulmonologists to other medical professionals (primary care physicians, cardiologists and dentists). The number of diagnostic modalities has increased as have the number of treatment options. 

It is this change, that I will discuss in part two of the end of sleep medicine.

Must-have-titles for your Sleep Bookshelf...

 Dr. Dement's 1991 book set the stage for the discussion about the importance of sleep to health. Our hope is that he will have an opportunity to provided an updated version.

Dr. Lavie's book is a fascinating history of the study of breathing with some unlikely characters along the way.

Dr. Park, an ENT surgeon has an interesting take on how to address issues of sleep and sleep- disordered breathing.

A newcomer to the list - Matthew Walker shares the advances in our understanding sleep and dreams.

There are so many other volumes on the subject worth reading and having as part of your sleep library.

Sleep well.

One chapter ends and another begins….

After 10 years at the helm of the American Sleep Apnea Association, I step down, bowing to the Board of Directors’ decision to set a new direction for the Association under new leadership.

I am proud of what we have accomplished to raise the visibility of the ASAA, putting the patient at the center in our efforts to combat sleep-disordered breathing along with our partners nationwide.

Successes with shout-outs –

 ·        First Sleep Apnea Awareness Day lecture with David Rapoport (2005)

 ·        Apnea Support Forum with Michael Sussman and Linda Duyer (2005)
 ·        Open Letter to the Sleep Community published in the Journal of Clinical     Sleep Medicine with Kingman Strohl (2006)
 ·        Remake of the “What Is Sleep Apnea?” video with Deborah Papier (2008)
 ·        First Sleep Apnea and Trucking Conference with Reid Blank and Bob Stanton (2010)
 ·        CPAP Assistance Program with Mark Seager and Kalimah Ashby (2011)
 ·        Chairing the first International Roundtable of Sleep Apnea Patient Organizations at the World Congress of Sleep Apnea with Mario Fabiani (2012)
 ·        Proposal to the Patient-Centered Outcomes Research Institute for a Patient-Powered Research Network with Susan Redline, Steve DeCelle and Carl Stepnowsky (2013)

What’s next?

Not clear as of now – what I am hoping for is to continue my efforts to promote sleep health and to leverage what and who I know to help people get the good night’s sleep they need and deserve.

invictus

Perfect Storm - Delivering the right therapy

As mentioned earlier... up until the mid-eighties the treatment of sleep apnea was exclusively the province of ENT surgeons. UUUP surgery and variants was a novel replacement for a trach. The commercialization of Dr. Sullivan's discovery of Continuous Positive Airway Pressure in the mid-eighties changed the landscape considerably. While ENT surgeons are still more likely to prescribe CPAP than other medical specialties - there are pulmonologists, neurologists, psychiatrists and even general practices physicians who are prescribing CPAP (on the basis of PSG). Once the prescription was written for this new therapy and it would be reimbursed by insurance - who would provide it? The Durable Medical Equipment industry of course. They have experience with delivering oxygen therapy to patients and this was the same thing, right? Wrong! CPAP is about as different from oxygen therapy as anything could be.

Oxygen therapy is straightforward, once the correct flow is determined. A driver would stop by and replace the tank every 30 days or so for as long as the patient was alive (which was never for very long, back in the day anyway). The practice of just dropping off the CPAP device and mask is something DMEs have done and in some cases still do - with disappointing results.

No real consideration (i.e. patient input) was given to the distribution model for CPAP once it became commercially available.

There you have it - the elements of the perfect storm: a condition that is more prevalent than previously thought, a system for testing that is better suited for research than for diagnosing an epidemic, and a distribution channel that fails to recognize that treating the condition requires something more than someone delivering a box to the door.

Next up... surviving the storm and moving ahead.

The Perfect Storm - Arriving at a Diagnosis

Two stories... there was a time, a while back, when a noted physician invited a group of residents into a patient's room to show them someone with sleep apnea. A condition he said that they might only see a couple of times in their professional career. Another noted sleep medicine physician when talking about diagnosing people with sleep apnea says that janitor who works in building is capable of "diagnosing" patients while they sit in the waiting room.

Sleep disordered breathing in the form of obstructive sleep apnea is not rare, far from it. The increasing age of the population and the increasing body mass index is making all too prevalent. Sadly, it becoming more common in children as well..

What are the tools required to determine whether obstructive sleep apnea is present and sufficiently severe to warrant a therapeutic intervention. How much information is enough information to say yes, this person has sleep apnea and needs treatment. 

There are some who believe the only definitive way to determine whether sleep apnea serious enough to requirement treatment is using a sophisticated research tool - monitored in-lab polysomnography (PSG). PSG collects a lot of information - it should, it is a valuable research tool - but could it be TMI when considering that sleep apnea is not as the earlier noted physician indicated a rare condition... a medical curiosity.

The janitor in the sleep lab determining who has the condition may likely be too much in the other direction - not enough to assess what are likely the less severe cases (mild to moderate including Upper Airway Resistance Syndrome).

Technology exists, actually it has existed all along that provides enough information to conclude there is a condition to be treated. In fact, the technology is getting more and more sophisticated - able to record more channels of information for the physician to use to arrive at a diagnosis.

The use of out of center or home sleep testing, as is becoming the requirement of health insurance companies through their proxies, will certainly increase the number of diagnosed patients. But, if once diagnosed the patient doesn't have someone trained to guide them to the appropriate treatment and help them manage the condition - we have accomplished nothing, perhaps made the situation worse.

If the first element of the Perfect Storm was a condition that was poorly understood in terms of its prevalence in the general population, the second element is how we arrive at a diagnosis for a condition once thought to be rare, but that is so common the janitor in the sleep lab could recognize it (at least the more severe cases).

                                                     (to be continued....)

Happy Holidays from the American Sleep Apnea Association

Wishing all the far-flung friends of the ASAA best wishes for the holidays! And here's to hoping that 2010 is the best year ever - Cheers!

If you haven't completed your charitable giving for 2009, please consider making a gift to the only national organization dedicated to sleep apnea education, support and advocacy.

Get some sleep!

Edward Grandi

Executive Director

When was the last time someone described what you had done as brilliant.

I have just returned from a brief trip to London where I participated in the Sleep Apnoea Trust Association's annual meeting, held John Radcliffe Hospital in Oxford (pictured here on the left).

I managed an invitation to speak at their annual meeting after a long correspondence with one of their trustees (Rob Holt) and their Chairman (Frank Govan). The ASAA has been on the mailing list of their newsletter for many years and I saw this visit an opportunity establish a personal connection with their leadership.

I had a wonderful time. Frank and his wife Wilma hosted me on the day I arrived. We had a number of long talks about operating a non-profit (read getting money) and about areas where we have mutual interests. Another guest at their home was Jean Gall who is the Chair of the Sleep Apnoea Scottish Association.

The next day was onto Oxford and SATAday (I love the name). The meeting drew about 300 people from all over England. It is similar to an A.W.A.K.E. meeting... with medical speakers (in this case Prof. John Stradling) and others from the hospital. There was an equipment fair and since there is no DME/HME arrangement in England - the manufacturers can sell direct to the patient (with proper documentation, ie prescription). Lunch was also served and there were "chatshops" or break-out sessions in the afternoon on specific topics.

I spoke in the morning session, following a presentation by Professor Stradling. My topic was OSA in the USA.

My title slide had two pictures of Jimmy Stewart. One from the Alfred Hitchcock film "Rear Window" and the second from the Frank Capra film "It's A Wonderful Life." I told the audience that many times in my capacity as executive director of the ASAA that I felt alternately like the Jimmy Stewart character in "Rear Window"; he was stuck watching a murder being committed and was somewhat powerless to do anything, I am stuck watching apnea patients not get the care they need at the hands of unethical sleep testing facilities or uncaring homecare companies (though unlike him, I don't have Grace Kelly to keep me company). On the other hand, sometimes I feel like Jimmy's character George Bailey in "It's a Wonderful Life" because despite all the bad stuff and my despair, the association has a positive influence and the apnea patient would be worse off if we weren't there.
My presentation had two objectives: providing some insight into healthcare in the United States in general and to provide some specific insights about the treatment of OSA for the American patient.

My brief discussion of the healthcare reform debate began by saying there are a number of challenges to reforming the system. The first is captured by a quote attributed to Princeton economist Uwe Reinhardt, Ph.D: Americans are the only people who think death is a failure of the healthcare system. The second has to do with the attitude towards the problem of obesity. Here I trotted out a slide that has become iconic on obesity. The audience had a good laugh on both comments.

The second part of my talk compared the way sleep apnea diagnosis and treatment are provided in the United States versus England. And while there maybe some shortcomings with the National Health Service, though less now that the National Institute for Health and Clinical Excellence has weighed in on the subject of treating sleep apnea; at least there is less chance of a patient falling through the cracks because in the U.S. in some cases the diagnosis is delivered by one medical professional and treatment is delivered/"monitored" by another possibly leading to what I called a bad Alfonse and Gaston routine.

The second point I made was concerning the technology to treat sleep apnea. The audience might feel a bit jealous that the devices available to treat sleep apnea in the United States is latest and greatest available compared to what is provided to them. But in actuality, the technology is like the bullet train passing Mt Fuji in Japan and getting ahead of the physician who prescribe them. The patients who consult the Internet learn about these devices and demand prescriptions specifying these machines, without the physician fully understanding if this is the

appropriate therapy for the patient.

My final point in this part of the talk was on adherence or compliance to therapy. For a number of different reasons adherence to therapy particularly with CPAP is not great averaging around 50%. Though this rate of adherence is comparable to adherence to therapy of other chronic diseases. That said, people are always looking for additional reason to use the CPAP... beyond that fact that it improves the quality and quantity of your life. I pointed out to the

audience the result of a recent study conducted in the U.S. showing that using the CPAP takes a stroke off your golf score and that an improved golf score was motivation enough to improve compliance with therapy... everyone wants to be Tiger Woods.

The audience was very appreciative and many made a point of coming up to me afterwords to express thanks for coming all that way to speak. They said the talk was "brilliant" and they usually had a story to share about a relative in the States.

I was happy to receive the invitation and would be happy to return at some point in the future to talk about sleep apnea diagnosis and treatment when healthcare reform is done.

Comparative Effective Study on sleep apnea

In the beginning (prior to 1978), there were two treatment options for obstructive sleep apnea: radical weight loss program and a tracheotomy. Then there was the UPPP. This was up until the introduction of Continuous Positive Airway Pressure, which according to the inventor was intended to be a stopgap treatment.


CPAP was so effective that it replaced surgery as the first line ( it became the "gold standard") treatment for OSA. Since its invention, there have been variations on UPPP using laser and ablation, which have had varying levels of success. Also introduced were other types of surgical interventions that are intended to manage the tongue.


Also developed with the intent of managing the tongue and enlarging the opening to the upper airway through moving the jaw forward are oral appliances - tongue retaining devices and mandibular advancement devices.


There are also more radical surgical procedures... breaking and moving the jaw forward and bariatric surgery.


Finally there are new therapies now the horizon such as Provent and Aura6000.

How do we establish the relative merits of these various therapies? What does it mean that they "work"? Is it the elimination of snoring and/or reduction of Apnea-Hypopnea Index and/or lowering blood pressure and/or reduced insulin resistance and/or improved psychomotor vigilance and/or improved cognitive functioning? Are we missing something if we stop at saying - four hours per night for 70% of the nights over a 30 day period.

It is difficult to measure quality in healthcare with respect to OSA if the benchmarks themselves vary from person to person.

It may be that the science of treating sleep apnea is still too young to have a specific number similar to diabetes, where if your HA1C is above or below a certain point there is a problem.

Today, I don't offer any answers. Today I only ponder.

Celebrating the Father of Sleep Medicine

I traveled to Palo Alto this weekend to join with a very large group of people to celebrate the 80th birthday of William C. Dement, a long-time professor of medicine at Stanford University and the recognized father of sleep medicine.

I can think of no person, physician or layman, who has done more to put the subject of sleep on the public agenda. His efforts have been tireless educating the policy makers that "Drowsiness is Red Alert".

In additional to all of his scientific research (the discovery of REM - Rapid Eye Movement - Sleep),establishing the first sleep disorder clinic in United States (on the campus of Stanford), his establishment of the American Sleep Disorders Association (which went on to become the American Academy of Sleep Medicine)...perhaps the most important contribution is his mentorship of so many people who have gone on to do significant work in the field of sleep medicine.

I was pleased to be a part of the celebration and experience the great outpouring of love for a man who has done so much to bring into focus a segment of everyone's life (fully 1/3) that is so little understood - sleep.

http://www.youtube.com/v/Y1yCDVJzYKc&hl=en&fs=1

Happy Birthday Bill!

Catching my breath...

It may be a cliche... but there just aren't hours in the day to get done everything that needs to be done and not the least of which is posting content in this space.

May 1st marks the beginning of year 5 as the executive director of the ASAA and I get the distinct sense that the great wave of awareness about sleep apnea is nearing the crest. All the work done by us and others is about to reap the award of national/international attention being focused on this life- threatening condition. One hint that "we" have arrived... Phillips, and a second... Medtronic and one more just for good measure J&J .

So I will pause to look back over the past year and couple months, but not for long. There is no resting on your laurels here... it is a lot more of "what are you doing for me NOW".

Two significant happenings, one internal and one external in the past year are likely to shape the future of the association's work and the focus of my activities:

• The completion of the video - What Is Sleep Apnea?

The video was unveiled to the medical community at the American Thoracic Society meeting in Toronto. There is was great interest among the physicians attending from outside North America. In fact, the video is now playing in Poland, Qatar, Venezuela and the Czech Republic. In addition to the English language version there is a version in Spanish as well. There were a number of inquiries about creating a version in Arabic, Portuguese and Chinese... (these are items for the ever lengthening to do list).

The video proved to be very popular at the Associated Professional Sleep Societies (aka Sleep) meeting as well. Sleep Technologists passing by the booth stopped to watch and took advantage of the discounted price to pick up a copy or two for the office. Watch it here.

The timing of creating this video could not be more on target and this is due to the second happening - the external one that will most definitely shape the future work of the association:

• Revisions to the Centers for Medicare and Medicaid Services - National Coverage Determination 240.4 .

This decision, which modifies the basis of how Medicare will provide reimbursement for the prescription of CPAP therapy for the treatment of OSA, is a watershed event. Once fully implemented, and the non-government insurance companies adopt (which they usually do to keep life simple) the practice of allowing the use of home sleep studies for the diagnosis of sleep apnea... there is likely to be many, many more people getting diagnosed and hopefully treated. There is likely to be many with questions and concerns. Who will they turn to when they can't reach their primary care physician, sleep specialist or the respiratory therapist associated with the home care company? Three guesses... Google - more on this next time.

I had the good fortune to have a friend recommend a book to me that significantly influenced the way I think about moving the ASAA forward... Good to Great, by Jim Collins and in particular the monograph he wrote for the benefit of non-profit organizations.

The beauty of this book and I highly recommend it to all people in either the for-profit or non-profit sector is the simplicity of the main idea for moving an organization from good to great... the Hedgehog Concept:
I am pretty clear on the two of the three circles...Our challenge in the coming months will be to answer the question - What drives your economic engine. It is vital that the leadership of the ASAA do so, because our long-term success depends on us clearly identifying what it is and using it to measure our success to those who will support our operations in the future.

Thanks for checking in and I will be back with future directions soon.

Sleep Apnea Video premiere

As a part of National Sleep Awareness Week and in advance of Thursday - March 6 - Sleep Apnea Awareness Day, the American Sleep Apnea Association will have a premiere of it educational video - What Is Sleep Apnea? This video, available on DVD, is the remake of our first educational video of the same title, produced in 1994.

Of the many things I have wanted to accomplish in my capacity as executive director of the association, recreating this video was high on the list.

We were fortunate to find unrestricted educational funding from Cephalon to make this a reality. I personally was fortunate to have a collaborator who was extremely interested in the project, so I did not have to give up running the ASAA during the four months it took to produce the finally product.

Tonight is a celebration of that effort and a chance to say thank you to the many people who were involved in making the film possible.

Two segments from the video are on Youtube as PSA - just search sleep apnea psa.

You can order the DVD from our web site and later this month a Spanish language verison will be available as well.

All the best and sleep well.
ED

A new metaphor for untreated sleep apnea

Imagine a pebble dropped into a pond...what happens is an expanding concentric circle from where the pebble touched the water.

I am beginning to understand untreated sleep apnea in this way: an expanding circle of misery.

It begins with the individual, the lack of restorative sleep from the frequent arousals caused by the apneic events results in excessive daytime sleepiness. The frequent arousals can result in a spikes in blood pressure resulting in hypertension. The apneic events can cause oxygen destaturation which can result in cognitive deficits.

The circle expands to affecting the bedpartner and the family. The bedpartner experiences lack of restorative sleep due to concern over the pauses in breathing or the sound of loud snoring. Increased irritability from lack of sleep can result in conflict in the family. In extreme cases, this can tear the family apart.

The circle expands further affecting the workplace. A sleep deprived employee is less productive due to lack of focus, more prone to accidents and injuries. People with untreated sleep apnea have higher utilization of the healthcare system and increase healthcare.

The circle of misery at its largest point affects the larger community and society as a whole. Sleepy drivers are more likely to have automobile accidents. A number of major industrial accidents, whose impact extended far beyond the confines of the plant were attributed to excessive daytime sleepiness.

March 6th is Sleep Apnea Awareness Day... check your snore score and if necessary talk to your doctor.

A new year and new challenges - testing for sleep apnea

Be careful what you wish for... that was a comment I heard while attending the hearing on using Home Sleep Testing (HST) for the diagnosis of Obstructive Sleep Apnea (OSA). Be careful indeed.

The Centers for Medicare and Medicaid Services has proposed a revision to their National Coverage Determination concerning the prescription of CPAP for the treatment of OSA.

Currently, the prescription for CPAP would only be reimbursed if the diagnosis was made on the basis of a sleep study done in a sleep lab or sleep center.

The proposed decision could significantly change the landscape for the diagnosis and treatment of OSA. It would allow for the prescription to be reimbursed on the basis of an HST.

HST will be a good thing for the thousands/millions of people who have sleep apnea and are prevented getting treatment due to cost of testing or ability to access an existing sleep testing facility. But, the decision removes necessary participation of the sleep specialist from the treatment pathway and places great reliance on the primary care physician, who may or may not be able properly care the patient with a sleep disorder.

A dear colleague and friend says that the custodian in the office of her sleep lab is capable of diagnosing cases of sleep apnea. But what about the cases that generate a false positive or worse a false negative. What happens with those cases?

CMS will need the wisdom of Solomon to work this out. Whatever their decision, the ASAA will continue to be the comprehensive resource for those seek information about diagnosis and treatment and the home of A.W.A.K.E. and the Apnea Support Forum

2008 promises to be an interesting year... check back often for new entries.

Thanksgiving 2007

The office is closed today and tomorrow. This gives me a couple of moments to reflect on my activities since the last post....

The American Public Health Association meeting was incredible. I believe this was the first time the association had exhibited or at least since I came on-board with the ASAA. We came prepared for the show. Annelise Thornton, MHS of Sleepwell Solutions, prepared an excellent document outlining the need for the public health community to focus its attention on sleep apnea as a public health crisis. Attending the meeting provided a number of excellent networking opportunities, particularly with people who help connect with minority communities. Work is underway to do more with the APHA.

The ASAA held its annual Board meeting in early November . While the formalities of elections is not quite completed we are welcoming three new Board members... M. Elizabeth Johns, Burton Abrams and Eric Rude. Each one of these new Board members brings a special set of talents to the association and I am pleased to have them working with us.

The meeting itself was giving over to discussing some of the ideas put forward in Jim Collin's monograph Good to Great and the Social Sectors. It was a lively discussion and from that several working groups were created to develop sets of objectives and actions items. I am thankful for the work of the Board and look forward to the results of the group's efforts.

On top of all this activity, work on the remake of our 1994 educational video - What is Sleep Apnea? began in earnest. This is a project I have wanted to undertake since I started at the association. I am pleased to be working Henninger Productions. We have completed two days of filming... including one at the Sleep Lab at Georgetown University Hospital. The video should be available near the end of the year. Plans are to have video available in Spanish.

It is a busy time at the ASAA. I glad to have a moment to catch my breath and to give thanks to all the generous people who have helped to advance the cause of the association. Thereby making it the leading organization that it is today.

Happy Thanksgiving (and remember to PAP while you NAP ;) )

On MySpace - social networking

I am not certain people still believe that the Internet is leading all of us into greater and greater isolation. I would argue just the opposite. As the Internet evolves it is promoting a new connected-ness through social networking channels like MySpace and Facebook.

I created a MySpace page for the ASAA in 2005 with the thought using it as way to get more people to visit our various web sites. Looking at the stats as far back as they go that site has generated only a couple hundred referrals.

I have spent time, as many people do, pursuing friends and the list has grown to over 400. Of course, this pales in comparison with the number of friends popular actors and musical groups have for their pages.

I can usual count on a new friend request every couple of days and I enjoy "commenting" on their page with one of my two standard comments... sometimes there is more behind the snore or happy PSGing. The list of my friends includes many apneics and family members of those with apnea, but included are also many RPGSTs and sleep techs (hence the reference to PSG).

From time to time I answer questions and provide in some small way encouragement for those with OSA. Mostly, MySpace is a perch for me to observe a small portion of humanity... a portion that I have something in common with.

Am I "connected" with these people? The cynic would argue it is, in a false sense. Anyone can write anything they want about themselves or others and there is no easy way to confirm what they written. While that may be the case for some, that is not what I see when I read the entries.

While it is not likely that I will meet more than just a few of my friends from MySpace and most will remain just words and pictures on a computer screen. I feel I am part of a community, perhaps more as an observer and as such not entirely alone.

Busy week ahead... I'll be back.

Ut Prosim - That I may serve - 3 years at the helm

May 4th marked the beginning of the fourth year that I serve as the executive director of the American Sleep Apnea Association.

Perhaps it is fitting that I note the day while on the campus of Plymouth State University where my son is a second semester freshman. The motto of the school is the Latin in the title.

The work I am doing feels so right. My diligent efforts to expand and enhance the resources the association makes available to those seeking information and support, are making a difference. It would be too much to say I am saving lives, but fair to say that I am improving the quality of lives for some who need help and seek it out.

There is more to do... so much more to do, that sometimes I am overwhelmed. The challenges of leading a small organization with a large mission are many, but I endure; helped by the members of our Board of Directors and through the financial support of many (large and small).

My proudest accomplishments came late in my third year... the 3rd Sleep Apnea Awareness Day lecture, was probably the best one to date. In addition to Terri Weaver speaking on the efforts of snoring and sleep apnea on the family, Ashley Keenan spoke on her experience as a young woman living with the condition and ASAA Board member Nancy Rothstein provided compelling reasons for the need to do more. It is available on the Internet and as a DVD as a permanent record of the event.

The Apnea Advocacy Action Program... our entrance into grassroots advocacy. Apnea patients have an easier way to speak up and speak out on issues of importance to them and their families. Our first "call to action" is in collaboration with the National Sleep Awareness Roundtable and involves asking Congress to provide additional funds to the CDC for data collection activities on sleep and sleep-disorders. I am pleased with the response and look forward to further developing this resource.

Finally, this accomplishment is still in process Assistance Program (CAP). In partnership with , but is likely to be among the most beneficial... the CPAPResMed the ASAA will make available a limited number of Positive Airway Pressure devices through the A.W.A.K.E. Network of support groups to those who have no insurance and cannot afford to purchase a device. This is a pilot program and one I hope we can expand. I highlight still in process, because the details of the program are being finalized now. Stay tuned for developments!

I'll close this first post in a long time with a necrology. Two people, on nearly opposite coasts, from two very different stations in life passed away over the weekend... former football player Kevin Mitchell (age 36!) and a young man just shy of his 20th birthday, Nate Williams... both died in their sleep. The disclosed culprit in one case was sleep apnea. In the other, it can be safely assumed that OSA played a part.

There much too much still to do... watch this space for updates from the medical conferences starting later this month... please continue to support the important work of the ASAA with a financial contribution.

All the best,

ED

Happy New Year - 2007

Is this the year?

Is this the year when sleep apnea is recognized for the life-threatening disease that it is and people get serious about diagnosing it... and treating those who are suffering needlessly.

Will this be the year when the American Sleep Apnea Association makes the great leap forward as a patient interest organization and joins the ranks of the other serious chronic medical condition associations.

The catalyst may not be anything we did, but the publication of the Institute of Medicine report, which has shown a light on problems that have been around awhile.

We are getting ready. We are putting in place the systems we will need to meet the growing demand for services.

I am excited at the prospects of leading this organization into that bright future... watch this space for news as it happens in 2007!