Sleep Apnea ED

Comments delivered at HHS listening session for ACA Essential Health Benefits – October 19, 2011

2011-10-21T10:16:00.000-04:00

My name is Edward Grandi. I am the executive director of theAmerican Sleep Apnea Association, the only national nonprofit organization fora condition that conservatively affects 18 million adults in the U.S. I am hereto advocate in favor of coverage for sleep apnea as an essential benefit underthe insurance policies offered by the Affordable Insurance Exchanges.

The association sponsored a letter-writing campaign to theSecretary asking that sleep apnea not be overlooked in the development of ACA.Sadly, the word “sleep” does not appear once in the 2000 pages document thatbecame the law. Sleep an activity that takes up 1/3 of our lives. Subsequently,letters were written asking that sleep apnea be covered under the exchanges. Iam here to reiterate that request to the Secretary.

Prior to 1981 the only treatment options available for OSAwas a tracheostomy or radical weight loss. It was also thought that thecondition affected only middle-aged overweight men.

Epidemiological data collected in 1993 and published in theNew England Journal of Medicine provided proof that the condition has a muchhigher prevalence among adults than originally thought.

The discovery of positive airway pressure therapy in 1981 asan alternative treatment has made it possible to offer an alternative to thesurgical options available at the time.

There is an increasing number of studies associatinguntreated sleep apnea and the sleep deprivation caused by the chronicintermittent hypoxia can and does exacerbates serious life-threatening andmedically cost conditions like heart disease, diabetes and depression.

Inclusion of diagnosis and treatment of sleep apnea could insome cases forestall the development or worsening of some of these more seriousconditions thereby reducing healthcare utilization.

Cost effective diagnostic and treatment options exist todayand others are likely to be developed that will offset the cost of providingthese services to those who are currently uninsured.

By addressing this condition, especially if screening ismade part of nay health risk assessment would likely result in a net savings tothe system.

I thank you for this opportunity to comment and I am availableto the Secretary for further information on how treating this condition crossesall ten categories specified in section 1302 of the ACA.

To sleep, perchance to dream - second presentation

2011-10-16T08:26:00.000-04:00

The second presentation on Saturday morning was to interested members of the public on the island. Not surprisingly, there were more of them than members of the healthcare community the evening before. It is not hurt that my hosts, the Sleep Apnea Association of Curacao, had representatives on the radio a couple days before announcing the meeting.

Dr. Rach and I were now in sync as to who was presenting what and our talks were well received. Following the presentations there was a panel made up of me, Dr. Gerald Rach an ENT, Dr. Ramon Echague Coleman a Pulmonologist (and a graduate of a US medical school who will sit for the Sleep Medicine Boards in November) and Dr. Jean-Jamil Rojer the Oral & Maxillofacial Surgeon graduate of Howard University. The questions included several on the topic of sleep in general - a topic I covered.

My hosts were pleased with the turn out at both meetings and are hopeful about the future of sleep apnea therapy on the island.

For me I am honored to have been asked to speak and hope that my participation contributes in some fashion to improvement of how sleep apnea is diagnosed and treated.

I let everyone know that I am interested in a continuing relationship with patients and physicians alike - and look forward to returning in the near future :)

If you are interested in my slides - Healthcare professionals - http://www.box.net/shared/0vigd7zlbsk4oamdxuyl

Public presentation - http://www.box.net/shared/uzmguliqozbdi73dmxh1

It is not often that I see a rainbow, but this morning was one of those times... a good sign.

To sleep, perchance to dream - first presentation

2011-10-15T08:40:00.002-04:00

Yesterday morning was spent visiting several of the physicians involved in treating sleep apnea here on the island - Dr. Rach, the ENT (and my co-presenter) and Dr. Essebom, a pulmonlogist, who operates, rather will operate the only sleep lab on the island.

Besides introductions, the conversations revolved around the presentations, particularly the one last night that was to other physicians, healthcare professionals and representatives of several health insurers on the island.

One item, not originally addressed in my presentation was outlining the various diagnostic options available to treat sleep apnea. Readers know that I feel more attention needs to paid to treatment and follow-up than determining whether disease is present or not. But out of respect for Dr. Essebom I added a slide outlining the CMS decision on diagnostic options.

Arriving at the auditorium of the St Elizabeth's hospital, the only such facility on the island. The hall had the characteristics of an A.W.A.K.E. meeting with chairs arranged theater style and a side room with the display of equipment from the two DME's on the island and food.

Dr. Rach and I took turns presenting. I spoke first with an overview of the importance of sleep and the implications of sleep deprivation. Dr. Rach provided a overview of the pathophysiology of sleep apnea, complete with the sights and sounds of apneic events (much to the amusement of the audience).

I followed him with slides on treatment options and closed with a set of suggestions for next steps in a country where payors are not certain what to cover and why.

After the presentations there was a question and answer session that involve not only the presenters, but also Dr. Essebom and several other physicians, included a newly minted oral surgeon a graduate from Howard University in DC.

Overall the presentations were well received. Will they have an impact on how the condition is addressed, only time will tell.

Me speaking with the Minister of Health

We did have a VIP attend the session - the Minister of Health for the island came to the meeting to listen and to make an announcement. The government would in two to three weeks license Dr. Essebom's sleep lab making it possible for him to bill the government health insurance program and private insurers for sleep studies. Currently, people suspected of having sleep apnea are sent off island, at no small expense, for diagnosis and titration.

Today - presentations to the public

To sleep perchance to dream - arrival

2011-10-14T07:06:00.002-04:00

After a long day of travel we arrived in Curacao after sunset, so seeing the sites will have to wait until later. We checked in to hotel and then set off in search of dinner with our hosts from the Sleep Apnea Association of Curacao.

It was great to put a face and a voice with the names of people I have communicated with frequently the past few months. Our kindred spirits, doing the work of raising awareness about sleep apnea in a community that has challenges to understand the scope of the problem.

That is where I come in. One of my assignments is to help the healthcare community including health insurers to better understand why it is important to diagnose and successfully treat OSA.

Dinner was outdoors at a lovely seaside restaurant.The conversation ranged from strategies for organizing the meetings on Friday, to helping us better understand the system of healthcare on the island, to hearing stories about the work their association was doing.

Our friends are placing great store in my ability to move the needle on diagnosis and treatment of OSA here. I will not disappoint them.

Onto the meeting with Dr. Rach, the ENT.

To sleep, perchance to dream, to breath

2011-10-13T08:21:00.000-04:00

"To sleep, perchance to dream- ay, there's the rub."
Hamlet (III, i, 65-68)

A number of years ago, too many to remember exactly, I received an email from an apnea patient on the island of Curacao who was interested in starting a patient organization similar to the American Sleep Apnea Association.

I am always happy to help and sent copies of educational information we had and the old video... as much as we could fit into a large box, twice, because the first box did not make it.

Over the years there were friendly exchanges of email that always closed with the promise of my visiting the island.

About four months ago I got an email inviting me to visit and asking me to make to two presentations - one to healthcare professionals and one to the general public. To the left is the poster announcing the meeting dates and location.

The decision was made to include a second speaker, an ENT surgeon for the purpose of CME credits.

For the past couple of months I have worked on my presentations... tinkering with themes and images. One concept that I feel very strongly about presenting is the importance of sleep as contributing to a healthy life. It has become clear to me that it is very nearly impossible to persuade someone about the seriousness of untreated sleep apnea until they understand that without healthy sleep, they can't have a healthy life.

We leave today and I will report as I can from the Neatherland Antilles.

Sleep Apnea and Transportation Conference - Baltimore 11/08-09/2011

2011-09-04T07:46:00.000-04:00

We all know about sleep apnea and truckers. The ASAA hosted a conference last year that brought together key stakeholders concerned about commercial vehicle drivers at risk for sleep apnea.

We were successful in providing a venue where options could be discussed, particularly with respect to how the condition could be diagnosed that accomodated the driver.

We also made a point of highlighting the benefits of pursing a program of screening, diagnosis and treatment for truck drivers.

Following the meeting we thought about what a second conference would look like. We made the decision to stay with transportation, but to expand the scope of the meeting to include additional modes - rail, aviation and marine, along with trucking.

Working in cooperation with several of the regulatory agencies within the Department of Transportation we formulated a program that would be of interest to stakeholders across the various modes.

The subtitle to this year's event is health, safety and economic perspectives. The presentations will address more of the "why" addressing the issue of sleep apnea is critically important than the "how". We are fortunate to have a number of exhibitors who provide information the latest products available to diagnose, treat and insure adherence to therapy.

One of the highlights of the conference will be a panel discussion among medical staff from the Federal Motor Carrier Safety Administration, Federal Railroad Administration, United States Coast Guard and the Federal Aviation Administration. The panel will be moderated by Dr. Mitch Garber, former medical officer with the National Transportation Safety Board. They will address the challenges of regulating medical conditions in transportation.

Join us for two days of information and networking in Baltimore at the Sleep Apnea and Multi-modal Transportation Conference - November 8 and 9, 2011.

Happy Birthday CPAP and Happy Anniversary Sleep Apnea ED

2011-05-01T12:05:00.001-04:00

Busy as a beaver these days having recently completed a speaking engagement at the Georgia Association of Sleep Professionals over the weekend.

Off to the American Thoracic Society International Conference in Denver as an exhibitor and then to the Carolina Sleep Society. June is the "Sleep" meeting, of course. And there is more in the fall.

The following item caught my eye and I thought to share it here as I have in a number of other places. It appears in the British medical journal The Lancet, which published Dr. Sullivan's original research on the use of continuous positive airway pressure for the treatment of obstructive sleep apnea -
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60589-8/fulltext?rss=yes

May 1st marks the seventh anniversary of my hire as executive director of the American Sleep Apnea Association. I have had the good fortune to have many excellent teachers - patients and physicians alike - and the opportunity to speak with many of the thought leaders in the field of sleep medicine.

I count meeting and becoming acquainted with Dr. Colin Sullivan as one of the distinct privileges of my position. More importantly was to have had the occasion to thank Dr. Sullivan on behalf of the millions of people whose lives he saved by experimenting with positive airway pressure before a gathering of his peers.

Far from resting on my laurels as I begin my eighth year I am busier than ever. Stayed tuned, I will have more time to write on the long plane rides.

Sleep, Sleep Apnea and the Ides of March.

2011-03-17T08:09:00.000-04:00

The month of March has become, officially or unofficially, the month dedicated to sleep. It makes sense. For a long time and coincident with the vernal equinox we collectively (except for Arizona) adjust our clocks forward an hour to allow for an additional "hour" of daylight at the end of the work day. This adjustment occurs when we are, or should be, sleeping.

Our colleagues at the National Sleep Foundation designated the week before the time change National Sleep Awareness Week(r) and use that time to release an annual poll regarding a sleep issue.

This year, unlike previous years, there were several other important information releases during the month that bear mentioning.

On March 1st, the American Thoracic Society released a long awaited report on research priorities for ambulatory management of adults with obstructive sleep apnea. What is significant is that collaborating on the report are three of the principal medical societies responsibility for diagnosis and treatment of sleep apnea, plus the European Respiratory Society. Having everyone rowing in the same direction can only help improve the care of those with sleep apnea - here in the United States and Europe.

On March 7th, the Centers for Disease Control and Prevention published in their Morbidity and Mortality Week Report the analysis of data collected as a part of the "sleep module" from 12 states in their Behavioral Risk Factor Surveillance System (BRFSS). The addition of this set of questions to the BRFSS was due in large measure to lobbying the U.S. Congress to pay attention to sleep. A portion of the funding granted by Congress was used to pay the expenses of the National Sleep Awareness Roundtable. 2009 was the first time the module was included and as the graphic above indicates that those getting less than 7 hours of sleep a night have a higher likelihood of snoring, unintentionally falling asleep and nodding off (!) while driving.

The watershed event of the month occurred on March 15th, when the Institute of Medicine released their report on the leading health indicators for Healthy People 2020. The IOM, at the request of the US Department of Health and Human Services distilled the nearly 600 objectives included in Healthy People 2020 down to the 24 most important. Included among the 24 was one of the four from the Sleep Health topic - Increase the proportion of adults who get sufficient sleep. It was already significant that sleep now had its own "topic" under Healthy People. On top of that, to be included as one of the leading health indicator is a great leap forward in awareness.

March is about sleep and this year the needle moved on the importance of sleep. Now our job is not to let them forget about it the rest of the year.

Sleep apnea and the eternal city

2011-02-23T07:00:00.000-05:00

Every three years thought leaders in the field of sleep medicine gather to share their research and new developments in the diagnosis and treatment of sleep apnea - the World Congress on Sleep Apnea.

Clinicians and researchers from all the medical disciplines associated with the condition will be present for a week-long series of lectures, symposia and poster sessions.

Under the leadership of Dr. Christian Guilleminault, the next meeting will be in Rome, Italy in late August of 2012.

The chair of the organizing committee is Prof Mario Fabiani from the University of Rome.

The American Sleep Apnea Association is one of the supporting institutions and we will be actively promoting the event. Click here for the event web site.

Readers of this blog know that I attended the 2006 World Congress on Sleep Apnea held in Montreal. I am still hoping to bring together representatives from other sleep apnea patients groups for a parallel meeting.

Stayed tuned... more to come.

Sleep apnea in prime time

2011-02-13T09:09:00.001-05:00

What do the television programs “Men of a Certain Age,” “Mike & Molly,” and the recently released film “Hall Pass” have in common? Obstructive sleep apnea. Principal characters in each are seen with a CPAP device. There are probably other TV shows and movies where the ubiquitous device is present, but those three come to mind quickly.

In the episode where the machine appears in “Mike & Molly,” Mike is rather matter of fact about using it and Molly is a bit put off. The laugh track rolls when she is frustrated by the fact that Mike’s mouth keeps coming open. (Where is the chin strap when you need it?)

While some people will find these representations somewhat offensive because the person wearing the mask is the object of ridicule, I have a different spin on sleep apnea portrayed on the big and little screen.

The creators/writers of “Mike & Molly”—there is probably an apneic among them—understand some portion of the viewers of the program use a CPAP, or sleeps with someone who does, or knows someone (maybe many) who are either users or partners of a CPAP user.

The use of the CPAP has become so commonplace that we can laugh about the foibles of using the device. The humor comes from “getting it” and not from thinking the wearer looks silly.

I continue to be amazed at how this condition is becoming part of everyday life—at least for some people. The challenge for me and the association is make it part of everyday life for most people.

I am ready for my close- up, Mr. DeMille....

Sleep Apnea and Health Care redux

2011-01-29T08:47:00.017-05:00

I have commented elsewhere in this journal about the value of being in Washington. This past week was another example of the opportunities that present themselves when you are located in the Nation's Capital.

At the beginning of the week I attended a forum entitled “Health care reform, what's next?” This event had been postponed two weeks previously owing to the shootings in Tucson and before the vote in the House of Representatives to repeal the Affordable Care Act.

I go to these events, like most, hoping to gain some nugget of insight that might otherwise not make it through the media's filter. Another reason, again why most go, is the networking opportunity the gatherings provide. Hey, this is Washington.

The nugget for me came from Republican pollster Bill McInturff. who indicated that the majority party in the House of Representatives had nothing to “replace” what they had recently “repealed.” Without an alternative, HR 2 would go nowhere.

Unfortunately, I had to leave early and so had to miss the comments of Neera Tanden. Her perspective on how health care reform has evolved, given that she has been working on it since the beginning, would have been interesting.

I shared a table at the event with someone in federal affairs from AHIP, America’s Health Insuance Plans, the health-insurance lobby, and used the opportunity to remind my companion how important it is that health insurers provide coverage for the diagnosis and treatment of sleep apnea.

I left early to attend a briefing by the Nancy Brown, CEO of the American Heart Association, on a new economic study by her organization on the future cost of heart disease. My interest in attending the briefing was to introduce myself to her, which I did after the meeting. But I also used the briefing to raise a question about the role of healthy sleep in preventing heart disease. She wasn't quite ready for that question, though she did admit that quality sleep was important to her.

When I did get a chance to speak with her, she acknowledged that sleep is important and that there is some evidence of a causal relationship between OSA and heart disease, but she stressed the need for better medical evidence of the relationship. I was reminded of the summary section from an article that appeared in a 2008 issue of Circulation, the AHA journal, that highlighted numerous hurdles facing heart specialists in developing best practice principles to limit the adverse cardiovascular impact of sleep apnea.

We exchanged business cards. We have subsequently exchanged e-mails. We'll see what happens.

At the end of the week I was back at the National Press Club, this time for a briefing by the president of the American College of Physicians, Fred K. Ralston, M.D. ACP is the medical professional society that represents 130,000 general practice physicians in the United States. Ralston presented the State of the Nation's Health Care 2011. The ACP supports the Affordable Care Act, but sees room for improvement.

The ASAA has not taken a position on the law. Our concern has to make sure that diagnosis and treatment of sleep apnea is covered. We have asked visitors to our web site to write to HHS Secretary Sebelius requesting that coverage be included as the rules and regulations for the law’s administration are drawn up.

The points made by the ACP and its interest in pursuing “High Value, Cost Conscious Care” makes a lot of sense. Our own experience is that early diagnosis and treatment of sleep apnea can significantly reduce the cost of health care down the line.

We will explore further working with the ACP to educate primary care physicians, nurse practitioners, and physician assistants about sleep apnea and the benefits of treatment.

Sleep Apnea and Healthy People 2020

2011-01-06T06:59:00.000-05:00

The sleep community realized a small victory last year. It could be a large victory, it depends on how our fragmented community decides to move forward.

The Department of Health and Human Services develops, every 10 years, a set of objectives to guide health policy for the citizens of the United States.
Quoting from the web site:

Healthy People provides science-based, 10-year national objectives for improving the health of all Americans. For 3 decades, Healthy People has established benchmarks and monitored progress over time in order to:

Encourage collaborations across sectors.
Guide individuals toward making informed health decisions.
Measure the impact of prevention activities.

Previously issues around improving sleep in young people and adults were spread across various topics. In the recently released document, sleep health has its own. The first objective listed under this topic:

SH-1 Increase the proportion of persons with symptoms of obstructive sleep apnea who seek medical evaluation.

That could be the mission statement of the association.

Now we can point to something that indicates the Federal government is concerned about the number of people with sleep apnea symptoms who aren't seeking medical evaluation.

Satisfactory accomplishment of the objective would to increase the number of persons with symptoms to seek medical evaluation by 2.5% over the course of the next 10 years.

Sounds do-able!

But in order to accomplish this objective we will need increase awareness about sleep apnea - believe it or not, there are still people who don't know what sleep apnea is - why would they; it is something that happens while they are sleeping and the only evidence of the problem could awakening unrefreshed and/or complaints from their bedpartner (if they still have one).

There is a second population that needs increased awareness - primary care medical professionals - family practice physicians, internists, nurse practitioners and physicians assistants. Let's include dentists and oral hygenists as well since they see people with symptoms more often than the others.

The ASAA will do its part. Not only making people aware of the negative consequences of not seeking medical evaluation, but, and more importantly, reminding people of the benefits of treatments - the improvement in the quality (not just the quantity) of life.

If you are concerned about undiagnosed/untreated sleep apnea in yourself or in someone important to you, contact the the American Sleep Apnea Association or visit the web site - http://www.sleepapnea.org/ - let's get to 3%.

Happy New Year!

Sleep apnea, comparative effectiveness and the future

2010-11-26T07:04:00.007-05:00

The need for comparative effectiveness research follows from a recognition that we, as a country, don't have unlimited resources to expend on the delivery of healthcare; particularly as it relates to medical devices.

It makes sense for healthcare payors to pay for what works and not what doesn't. That said, there is very little incentive for innovation if the hurdle of effectiveness is so high that medical device manufacturers are reluctant to spend the money in research and development.

For those using Positive Airway Pressure therapy to treat obstructive sleep apnea, the question of comparative effectiveness can be an concern, especially when there is innovative technology available to make treatment more effective or more comfortable.

Recently I attended a breakfast meeting hosted by the publishers of Health Affairs. Their October issue of the publication was dedicated to the question of comparative effectiveness. While the entire issue is worth reviewing there was one article of particular interest to me.

Steven Pearson and Peter Bach considered a way to incorporate comparative effectiveness into the reimbursement scheme for Medicare. Quoting from the article: "Upon making a new coverage decision, Medicare would assign the service (added - heath care item) to one of three payment categories based on the evidence of comparative clinical effectiveness. After an initial three-year period, if services with insufficient evidence do not provide additional evidence demonstrating superior clinical effectiveness, payment would drop to reference pricing levels."

This strategy allows for companies introducing new technology to get three years of "dynamic pricing" and to allow for the manufacturers and clinicians to perform research to demonstrate superior effectiveness of existing therapies.

The recently published draft comparative effectiveness review on the diagnosis and treatment of obstructive sleep apnea in adults did not find compelling research to show the superiority of other PAP therapy over traditional CPAP.

How this report is used could make it harder for device manufacturers to realize a higher rate of reimbursement for more sophisticated technology. But using the scheme proposed by Pearson and Bach there could be some additional benefit pending the clinical outcome data to justify a high reimbursement.

Dr. Berwick, if you are listening... I think incorporating comparative effectiveness model proposed in Health Affairs into what Medicare will reimburse and at what rate makes a lot of sense, particularly when it comes to therapies (PAP and OAT)for the treatment of Obstructive Sleep Apnea.

ASAA Comment to AHRQ CER on Sleep Apnea

2010-11-24T08:32:00.003-05:00

Readers of this blog know that I am concerned about comparative effectiveness research and the impact it will have on the delivery of healthcare to those with sleep apnea. The Agency for Health Research and Quality (AHRQ), the federal agency within the Department of Health and Human Services charged with comparative effectiveness research commissioned a comparative effectiveness review on diagnosis and treatment of obstructive sleep apnea in adults.

Below is our comment on the review. I have some other thoughts on comparative effectiveness and I will be back with those over the Thanksgiving holiday.

The American Sleep Apnea Association (AASA) thanks the Agency for Health Research and Quality (AHRQ) for undertaking a Comparative Effectiveness Review (CER) of diagnostic and treatment modalities for Obstructive Sleep Apnea (OSA) in adults.

Given the prevalence of the condition and the health consequences associated with leaving the condition untreated and its progressive nature, it is appropriate that an analysis be done to determine the relative effectiveness of various diagnostic tools and treatment options.

The ASAA is encouraged by the attention that has been given to sleep apnea and the recognition that the questions addressed by this review are important for the public health. It is unfortunate that, at the present time, so many of the answers are not supported by clear data, and that the AHRQ report finds most of the key questions to have low or insufficient evidence to answer. These results should be used to encourage obtaining data, and not be interpreted as there being no answer or that the question is not important.

Those preparing the review indicated a significant lack of clinical outcome data to support anything but “all cause mortality” in the patients with the severest forms of the condition. Issues such as improvement in quality of life or neuro-cognitive functioning, both very important outcomes, are supported by little evidence.

Both with respect to Positive Air Pressure (PAP) and Mandibular Advancement Devices (MAD) there was an insufficiency of evidence to address, which patients might benefit most from treatment.

The insufficiency of the evidence extends to evaluating the comparative effectiveness, the purpose of the study of the three different treatment modalities – PAP, MAD and surgery.

Despite these negative results there is confirmation of certain aspects of OSA diagnosis and treatment –

· Type III and IV “limited” channel studies are generally accurate to diagnose OSA;

· An Apnea Hypopnea Index (AHI) greater than 30 events/hr is an independent predictor of all cause mortality;

· Given the large magnitude of effect on the important immediate outcomes, such as AHI there is moderate evidence to show that PAP is an effective treatment for OSA,

· The same is true of MAD with respect to OSA in patients without co morbidities or excessive sleepiness.

The ASAA agrees with the conclusions of the CER that additional research needs to be done if the benefits of treatment using the various therapies are to be fully understood.

Given the prevalence and the health-related consequences of untreated OSA, financial resources available through the National Institutes of Health should be committed to address the future research conclusions listed in the report.

Sleep Apnea, Prevention and Healthcare reform

2010-10-23T22:44:00.018-04:00

I am actually old school when it comes to certain things. I like to wear lapel pins on my jacket. Most of the time I wear a shiny metal pin with the association's logo. Recently I started wearing one from the Partnership for Prevention. Their pin says

It would be great to be able to prevent sleep apnea. Untreated sleep apnea is associated with a number of life-threatening condition all of which put a drag on the healthcare system.

So, preventing sleep apnea is all about the three-legged stool -

diet, exercise and sleep.

I believe that without getting the right quantity and quality of sleep - diet and exercise won't happen.

If you aren't getting enough sleep (seven and a half hours or more) and enough of the right quality sleep (stage 3 or deep and REM or dream) - then it will be almost impossible to control what you eat and have enough energy to exercise.

Practicing good sleep hygiene is one preventive measure that can insure getting enough sleep and the right kind sleep.

Unfortunately, sleep apnea is reality, an epidemic really, so preventing it by insuring people get enough sleep will require a shift in public policy concerning the value of sleep that will require a generation or two.

For those who develop sleep apnea, what does effectively treating sleep apnea mean, beyond eliminating the snoring. It could improve or mitigate certain types of heart disease and diabetes and depression and ADHD in children and even alzheimer's in older adults.

Bending the cost curve, an important component of healthcare reform, could be accomplished, in part, by recognizing sleep apnea early, before it has done serious damage. Damage that ends up costing the healthcare system, including us - lots of money.

The ASAA wrote the USPTF and requested they consider adding screening for sleep disordered breathing to their Guide for Preventive Services. If they would add some like the STOP BANG questionnaire, developed by the anesthesiologist community to screen patients prior to surgery for sleep apnea, who knows how much money could saved in healthcare cost.

I started this blog post with the lapel pin from the Partnership for Prevention

and will end with saying that sleep health is a critical component to an effective prevention strategy. Every dollar spent on understanding, promoting, encouraging healthy sleep will be returned in happier, healthier, more productive people.

The Sleep Apnea and trucking conference - a last word

2010-06-06T10:33:00.003-04:00

The dust is beginning to settle on the conference the ASAA hosted on sleep apnea and trucking almost a month ago. And before it moves totally into memory I want to offer some comments.

There is a great deal of interest on the question of sleep apnea and the commercial vehicle operator. The basis for some of that interest is concern for the livelihood of those affected - the commercial drivers.

The objective we set out for ourselves in organizing the conference was to bring together representatives of the various stakeholders and provide a common basis of understanding on this thorny topic - sleep apnea specifically and not fatigue or hours of service. Beyond the understanding we had a goal of presenting information on alternatives.

I believe we were successful in providing stakeholders a platform to present information to the more than 400 people in attendance either though the formal presentations, the exhibitors and/or the conversations among attendees.

Our goal was not to resolve the question of who to screen and when, or when to have someone undergo a sleep study and what type. Our goal was to provide a forum and there we succeeded.

Planning for a future conference is underway. Stay tuned here or to be a part of it contact me directly.

A sleep apnea what if....

2010-03-23T08:16:00.005-04:00

We know that untreated obstructive sleep apnea (OSA) results in nighttime intermittent hypoxia. This occurs when no air is getting in the lungs and no oxygen into the bloodstream due to obstructions at the opening to the upper airway.

A byproduct of the intermittent hypoxia, current research shows is the development of cardiovascular disease which can result in heart attack and sudden cardiac death.

What if there is a mechanism in the body that protects the heart from infarction and ischemic results by increasing the number of blood vessels providing more oxygen in patients with some level of OSA. That is, the body "grows" more blood vessels called coronary collateral vessels (CCV) to serve the heart when it needs more oxygen.

An intriguing study published in the March 2010 issue of Chest puts forward this theory. The publication includes a letter to the editor by Drs. Peretz and Lena Lavie referencing other published work & work they did that supports the hypothesis of this original research.

Interestingly, the benefit seems to accrue to older people with mild to moderate OSA. Perhaps, because it takes time to develop the CCVs and that if the OSA is too severe, the cardiovascular insult is too great to withstand early death.

The study has a small sample (190 subjects) and the authors themselves indicate a number of limitations.

The concluding sentence of the study - In summary, there is an association between sleep apnea and collateral vessel growth. We speculate that OSA(S) may be a significant factor affecting growth of CCVs as a compensatory mechanism.

Not something you can take to the bank, but an interesting hypothesis and tantalizing enough that I will continue to watch with great interest.

Sleep Apnea on World Sleep Day March 19th

2010-03-14T07:00:00.011-04:00

Sleep Apnea Awareness Day 2010 was pretty quiet this year, this notwithstanding that the ASAA celebrates its 20th anniversary.

A lot of our attention is focused on the upcoming sleep apnea and trucking conference scheduled for May 11-12. If you aren't familiar with what we are planning, check it out.

We have other activities planned to celebrate the beginning of our 20th year of service to the public as the leading patient organization for education, support and advocacy for sleep apnea. Stay tuned.

I want to call people's attention to World Sleep Day this coming week - March 19th. Organized by the World Association for Sleep Medicine, it is a global effort to call attention to the importance of sleep and recognizing there are there are a number of disorders that interfere with it. Their catchphrase this year - SLEEP WELL, STAY HEALTHY. The organizers have simplified the rules for good sleep hygiene into a list of ten "commandments."

Another reason why I want to call your attention to March 19th is that World Sleep Day is part of a yearlong, worldwide recognition of lung health - The Year of the Lung. Most of the respiratory medical professional and patient organizations from all over the world are partnering to focus on the many issues that affect lung health and sleep apnea is one of those issues.

Our colleagues at the American Thoracic Society, founding partners for the Year of the Lung have taken as one of their charges promoting World Sleep Day.

We join with them to share the following declaration for March 19, 2010 - World Sleep Day:

Whereas, sleepiness and sleeplessness constitute a global epidemic that threatens health and quality of life,

Whereas, much can be done to prevent and treat sleepiness and sleeplessness,

Whereas, professional and public awareness are the firsts steps to action,

We hereby DECLARE that the disorders of sleep are preventable and treatable medical conditions in every country of the world.

Take time this week to think about how you and other members of your family sleep (particularly your children and grandchildren) . Share the ten commandments with those who would benefit from a change in their sleeping habits.

Remember - Sleeping well is a key to staying healthy.

2010-02-08T08:40:00.002-05:00

Here is a link to a news report our of Atlanta concerning the death of young man while undergoing a sleep study at the sleep lab at Emory University. The circumstances around the death remain a mystery. While we sleep, we are at our most vulnerable. Incidences like this one might cause someone already weary not to place their trust in those who watch them sleep. The sooner Emory can provide an explanation the better.

Family, Emory, At Odds Over Man's Death During Sleep Study - 11Alive.com WXIA Atlanta, GA

Healthy People 2020

2009-12-29T08:40:00.004-05:00

There is a specific objective concerning sleep apnea.

Making a Difference
Healthy People provides science-based, 10-year national objectives for promoting health and preventing disease. Since 1979, Healthy People has set and monitored national health objectives to meet a broad range of health needs, encourage collaborations across sectors, guide individuals toward making informed health decisions, and measure the impact of our prevention activity. Currently, Healthy People 2010 is leading the way to achieve increased quality and years of healthy life and the elimination of health disparities.
Now Is the Time
Every 10 years, the U.S. Department of Health and Human Services (HHS) leverages scientific insights and lessons learned from the past decade, along with new knowledge of current data, trends, and innovations. Healthy People 2020 will reflect assessments of major risks to health and wellness, changing public health priorities, and emerging issues related to our nation's health preparedness and prevention.
The Process
The Healthy People process is inclusive; its strength is directly tied to collaboration. The development process strives to maximize transparency, public input and stakeholder dialogue to ensure that Healthy People 2020 is relevant to diverse public health needs and seizes opportunities to achieve its goals. Since its inception, Healthy People has become a broad-based, public engagement initiative with thousands of citizens helping to shape it at every step along the way. Drawing on the expertise of a Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2020, public input and a Federal Interagency Workgroup, Healthy People will provide a framework to address risk factors and determinants of health and the diseases and disorders that affect our communities.
Stay Involved and Informed
Public participation is shaping Healthy People 2020, its purpose, goals, organization, and action plans. HHS is seeking input from communities and stakeholders through public meetings across the country and public comment periods. As a national initiative, Healthy People's success depends on a coordinated commitment to improve the health of the nation. Subscribe to the Healthy People listserv for the latest information on Healthy People 2020 and to receive e-mail notices of related news, events, publications, and more! To become an active supporter of Healthy People, join the Healthy People Consortium.

Happy Holidays from the American Sleep Apnea Association

2009-12-24T09:56:00.006-05:00

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.

2009-11-17T07:08:00.023-05:00

I have just returned from a brief trip to London where I participated in the Sleep A pnoea 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

2009-10-08T20:55:00.004-04:00

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.

Finding a place for the surgical option to treat Obstructive Sleep Apnea

2009-10-06T08:37:00.003-04:00

Discussions around the subject of a surgical option for the treatment of obstructive sleep apnea are frequently passionate. One need only visit the ASAA's online support group to see the verbal fists fly over whether it is a good idea or an idea that is desperately wrong.

The most common surgical procedure for treating OSA is uvulopalatopharyngoplasty or UPPP for short. Developed in 1981 by Dr. Fujita (the same year CPAP was first described) as an alternative to what was the only treatment for sleep apnea a tracheotomy. UPPP involves removing a lot of tissue from around the opening to the upper airway. This procedure is often done in conjunction with others to improve air flow through the nose.

The success of this procedure is reported to be between 16% and 83%, depending on how you define success. Some see success or cure after surgery as a 50% reduction in the Apnea Hypopnea Index (AHI) and others say a 50% reduction with an AHI less than 20. Though an AHI in this range can still considered moderate and detrimental to health.

The medical literature has been recently had several studies looking at the efficacy of the UPPP option for sleep apnea. An article published in September issue of the Mayo Clinic Proceedings provides results of a retrospective study where lab sleep studies were reviewed on 63 UPPP patients pre and post (six months) surgery. The objective of study was to determine if there was improvement in the AHI and whether that improvement was specific to any patient type.

Quoting from the results section of the abstract... "Patients who attained an AHI of 5 or less were younger, had lower Body Mass Indexes (BMI) and had less severe OSA. Of the patients with a post-UPPP AHI greater than 5 received continuous positive airway pressure, with a mean reduction in pressure of 1.4 cm H2O."

The take-away for me from this study and from others I have seen recently is that surgery has a place in the treatment options of obstructive sleep apnea. It can be very effective in *some* cases.

But that said, in my opinion, for surgery to be appropriately more main stream the surgeon must have a way of identifying/screening the candidates for whom this invasive procedure will benefit prior to surgery. Because once it is done, there is no going back.

International Symposium - Day Two

2009-09-12T07:04:00.003-04:00

The second day of presentations was more along the lines I am familiar with... human beings.

The talks ranged from sleep disordered breathing and fragmentation in people with COPD to standard anthropometric measurements predicting SDB in active NFL players.

The most interesting talk of the many interesting talks came later in the day and was delivered by Dr. Andrew Wellman of Brigham and Women's Hospital in Boston. The title was "A technique for measuring ventilatory control stability (loop gain).

Loop gain is one of those concepts that comes up often in discussions about making CPAP therapy more comfortable for those with sleep apnea - Andrew explained this way - "Loop gain was calcualted by dividing the ventilatory response (the amount by wihich ventilation increased above eupnea when CPAP was turned back to the optimum pressure) by the ventiliatory disturbance (the amount by which ventilation was reduced below eupnea during the dial-down).

I am not doing his presentation justice, but Andrew Wellman is one to watch.

The second day concluded with a festive buffet dinner on the grounds of the Frick Mansion. The highlight of the dinner was the awarding of three young investigator awards in memory of Anne Elizabeth Suratt, the daughter of Paul Suratt one of the founders of the symposium.

The awards went to:

Kevin Grace from the University of Toronto his talk - "On the role of pedunculopontine tegmental neurons in the modulation of the REM sleep state and its respiratory phenotype"

Gaspard Montadon also from the Toronto - "State-dendent modulation of respiratory activity by perfusion of neuropeptides into the pre-Botzinger Complex of the adult rat in-vivo"

Josiane Broussard from the University of Chicago - "Experimental reducation of sleep duration or quality is associated with impaired insulin signaling in the adipocyte"

The symposium concludes today and I will be back with info and final thoughts. Let me say this, I am impressed with the enthusiasm of the young investigators - the field of sleep medicine is in good hands.

11th Symposium on Sleep and Breathing - Day One

2009-09-11T06:51:00.003-04:00

I was never one that was particularly good at science. I think most of the instructors took pity on me and gave me a passing grade because my heart was in the right place (so to speak).

My work as the executive director of the American Sleep Apnea Association has so much more to do with the effects on humans of untreated sleep apnea and the challenges of adherence to treatment than with the mechanics of the breathing during sleep and the architecture of the upper airway. Though having something beyond a passing understanding of these topics is important, especially when thinking about the future of treatment for this condition.

So here I am, lovely Pittsburgh, home of the Steelers, Pirates and Penguins and the site of the 11th Symposium on Sleep and Breathing - a meeting held every two years or so that brings together the leading researchers in the field of sleep and breathing from all around the world.

Yesterday was the first full day, with 12 presentations and a featured talk from the Mark T. Gladwin, MD from the University of Pittsburgh it was quite a day.

Dr. Gladwin's speech on nitrite and the biology of hypoxic NO signaling was fascinating and one of the take aways is that cured meats may be helpful.

All of the other presentations were excellent - the format of this year's meeting was different from past years. In lieu of the senior researcher presenting, it is one of the junior researchers presenting work in progress.

All of the presentations provided insights to me and so were educational... the one that struck me the most was from a researcher associated with Dr. Montserrat of Barcelona Spain - Isaac Alemendros. The title of his talk was "Dyanamic changes in brain oxygen partial pressure during obstructive apneas."

The aim of his work was to carry-out a real-time measurment of tissue oxygen partial pressure (PtO2) in the cerebral cortex of rats during recurrent obstructive apneas mimicking those experienced by humans with OSA.

Conclusion - "These data suggest that the cerebral cortex tissue is partially protected from the intermittent hypoxia/reoxygenation stimulus induced by recurrent obstructive apneas."

Translation - It appears that that brain (in rats anyway) protects itself from damage from lack of oxygen during the on again/off again/on again that occurs during apneic events.

Great stuff!

Side-by-Side Comparison of Major Health Care Reform Proposals - Kaiser Family Foundation

2009-08-10T17:08:00.001-04:00

Side-by-Side Comparison of Major Health Care Reform Proposals - Kaiser Family Foundation

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Apnea-Snoring Directory

2009-08-04T13:36:00.003-04:00

I am pleased to announce that addition of new resource for sleep apnea patients and those who snore - Apnea-Snoring Directory

This online directory provides information and links to products and services intended to benefit the apnea patient and those who snore.

The American Sleep Apnea Association does not endorse or recommend any of the products or services listed in the directory, but provides this as a public service to those seeking more information.

The information in the directory is not intended to replace the advice of a qualified medical professional, only to give the patient access to a list of resources.

American Sleep Apnea Association signs onto Partnership letter

2009-07-31T10:18:00.001-04:00

July 30, 2009

Dear Speaker Pelosi and Senator Reid:

As members of the Partnership to Fight Chronic Disease (PFCD), we thank you for your leadership in Congress and support of President Obama in making health care reform a priority in 2009.

While health care reform is a complex issue with many different viewpoints, all agree that making quality health care coverage affordable on a sustainable basis is key to making quality health care accessible to all.

We believe that sustainable affordability will not be possible unless we take immediate and bold action to fight chronic disease. Despite all the resources currently being spent on health care in the U.S., millions suffer from preventable, common, and costly chronic health conditions such as diabetes, heart disease, and obesity. Their rapid growth causes individual health care costs to soar, undercuts U.S. competitiveness, and threatens Medicare and Medicaid viability.

Spending on patients with one or more chronic diseases now represents more than 75 percent of total spending on health care in the U.S., and even more in Medicare and Medicaid. Until we address the true causes of this crisis, we will never be able to slow spending or make health care more affordable. Nor we will have a workforce – or an economy – that can perform to its fullest potential.

The PFCD, a national and state-based coalition of hundreds of patient, provider, community, business, and labor groups, advocates for comprehensive health reform that controls health care spending through measures that simultaneously reduce costs and improve health outcomes. We believe the following policy proposals would do just that and deserve greater attention when drafting health reform legislation.

· Include care coordination models in Medicare, such as community health teams. Because of a lack of care coordination and poor payment mechanisms, Medicare is plagued with high rates of preventable chronic diseases and their complications -- resulting in avoidable hospital admissions and readmissions and other care.

· Tie Medicare payments to the quality of care received, not the quantity of care. Studies have shown that more care does not equal better care, and that a strong focus on prevention and effective management of chronic disease has eliminated a great deal of wasteful and expensive spending.

· Support primary prevention of chronic disease by stimulating growth and participation in workplace, community and school wellness programs. Evidence-based primary prevention programs that promote healthy behaviors, educate individuals about their health, and empower them to reduce their risk-factors have succeeded in reducing individual health risks and lowering rates of chronic disease.

· Remove barriers patients face to effective treatment and management of chronic illness. High out-of-pocket costs for prescribed treatments can make it more difficult for patients to follow their health providers’ instructions, particularly for low-income patients. The cost of poor patient adherence to therapy represents a huge missed opportunity; for instance, poor adherence to medication therapy alone has been estimated to cost the U.S. as much as $300 billion annually.

· Streamline administrative health care costs to reduce unnecessary spending. Simplifying and standardizing paperwork, and moving to an electronic-based system where information is available in real time would facilitate chronic care management and care coordination, leading to reductions in costs.

We encourage Congress to support and adequately fund these value-driven, cost-savings measures to ensure the passage of meaningful health reform in 2009.

Thank you, in advance, for your support.

Sincerely,
Partnership to Fight Chronic Disease

Dr. Oz... discusses sleep apnea (about 20 minutes in)

2009-07-21T14:26:00.000-04:00

Newswise Medical News | Sleeplessness Rising in a Falling Economy

2009-07-20T09:48:00.001-04:00

Newswise Medical News | Sleeplessness Rising in a Falling Economy

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Food Matters and Sleep Apnea

2009-07-08T08:52:00.003-04:00

I am taking a few days away from the office and I have with me a copy of Mark Bittman's new book - Food Matters A guide to Conscious Eating - which is part ecological/dietary manifesto and part recipe book.

My inspiration for reading the book is the fact that Mr. Bittman was formerly a sleep apnea sufferer, along with having high cholesterol and being pre-diabetic.

I don't know the details of Mark's OSA, but according to him, losing the extra weight he was carrying around eliminated the apnea symptoms. Quoting him - "[M]y apnea was gone; in fact, for the first time in probably 30 years, I was sleeping through the night and not even snoring."

I think we all know, or we should be aware that the food production industry in this country is not an improvement over what existed before. Bittman's argument is, that if anything, Big Food as he calls it is fouling the air, the water and our bodies by its over reliance on meat, corn and soy.

Food Matters reinforces the argument made by Michael Pollan in his recent book In Defense of Food that Americans need to reassess our eating habits especially if we want to improve our health. Mr. Pollan's maxim - "Eat food. Not too much. Mostly plants" makes a lot of sense especially if you understand that a by-product of that way of living you can reduce your risk of heart disease, diabetes, do your joints a favor by reducing the amount of weight they need to carry and perhaps eliminate weight-induced sleep apnea.

I don't know about you, but I know that losing weight would very likely help me with a number of health issues I am currently dealing with, so I will give some of the recipes a try and see what happens.

Happy eating and more importantly happy sleeping
ED

Sleep 2009 (day 1) - Most important sleep apnea abstract

2009-06-09T09:28:00.003-04:00

There are is a lot of good research going on in the world sleep apnea medicine as evidenced by the "posters" or abstracts of research presented at the 2009 Associated Professional Sleep Societies meeting in Seattle Washington.

The one that really struck my eye is the following:
Sleep and Breathing: Care of CPAP Equipment a Factor of Compliance and Hygiene.

Quoting from the abstract...
This study was designed to test wheter patients have difficulty adequately cleaning CPAP interfaces and if contaminated equipment increases problems and eventual abandonment. Regular washingt of equipment should be an effectivemeans of controlling bacterial and fungal growth with older interfaces morelikely to be contaminated.

30 patients on CPAP for more than one month were studied. Baterical and fungal cultures were taken from the interfaces and humidifiers. Cultures were classified, photographed, and colonies counted. Culture growth was so significant on the first 20 patients, that a secondary trial of mask washing and repeat culture was added.

Although the cultures grew mostly normal flora, the colony counts were high: 21% of the patients had 100-500 colonies and 48% grew >2000 colonies per plate. There was no correlation of severity or cleaning frequency with colony counts. Mask age was important: with fungal growth from 100% > 1 year old, and only 25% aged 1-3 months. Gram negative bacteria increased almost linearly with mask age. In the secondary trial, interfaces were rewashed, resulting in 90% lower colony counts, unless they were > 1 year old when washing was ineffective,

Conclusion: This pilot study suggests there are high counts of bacterial and fungal flora on CPAP interfaces, despite routine washing, with the older interfaces, more contaminated and resistant to cleaning. Furhter research willbe required to determine wheter increasing frequnecy of mask replacement is effective at reducing bacterial contamination, and ultimely improve patient outcome by influencing CPAP adherence or infection risk.
****
I spoke with the presenters and they indicated that they were using warm soapy water to clean the masks once a week to remove the contamination.

The message here is to clean your mask regularly and to replace the mask at least every six months.

Is someone on The Hill listening? A House Resolution on Sleep Apnea.

2009-05-25T21:59:00.003-04:00

I got a call about month ago from the deputy chief of staff for Congressman Gus Bilirakis (R, FL -9) and he advised me that Congressman Bilirakis was introducing a resolution wanting to increase awareness about sleep apnea.
I was quite pleased to learn this and happy to have a copy to review. Here is the text of what was submitted:

111th CONGRESS
1st Session
H. RES. 384
Recognizing the importance of increased awareness of sleep apnea, and for other purposes.
IN THE HOUSE OF REPRESENTATIVES
April 30, 2009
Mr. BILIRAKIS submitted the following resolution; which was referred to the Committee on Energy and Commerce
RESOLUTION
Recognizing the importance of increased awareness of sleep apnea, and for other purposes.
Whereas sleep apnea is a common condition that affects more than 12,000,000 Americans, according to the National Heart, Lung, and Blood Institute at the National Institutes of Health;
Whereas there are several types of sleep apnea that cause people with this condition to repeatedly stop breathing throughout the night, often many times;
Whereas sleep apnea is a chronic condition that disrupts sleep three or more nights each week, leading to excessive daytime sleepiness;
Whereas sleep apnea becomes more common with age, and 1 in 10 people over the age of 65 suffers from it;
Whereas sleep apnea is more common in men than women, and more than half of the people with sleep apnea are overweight;
Whereas sleep apnea can strike anyone, at any age, at any time, including children;
Whereas untreated sleep apnea can lead to high blood pressure, heart attack, stroke, obesity, and diabetes;
Whereas untreated sleep apnea can also increase the chance of having work-related or driving accidents and adversely impact the quality of life of those suffering from this condition in other ways;
Whereas lifestyle changes, mouthpieces, surgery, and/or breathing devices can successfully treat sleep apnea in many people; and
Whereas the lack of public awareness of this serious condition leads to many undiagnosed and untreated cases: Now, therefore, be it
Resolved, That the House of Representatives--
(1) supports raising public awareness of sleep apnea; and
(2) encourages all Americans to educate themselves and others about the consequences of sleep apnea and its potential treatments.

I would have liked to help them with the language, but no matter, the idea is there and we are hopeful that something will come of it.

If you have expressed your sentiments to your Members of Congress and the President concerning sleep apnea and healthcare reform... please do, www.sleepapnea.org/advocacy.

I am in touch with the congressman's office and have offered to be a resource to him in his efforts to raise awareness about sleep apnea on Capital Hill.

Happy Memorial Day - thank you to all the service men and women, particularly those serving while treating their sleep apnea - our hope is that we serve you as well as you served us.

The Grey Lady speaks on Sleep Apnea, again!

2009-05-14T07:21:00.005-04:00

As a native of Washington DC and a frequent reader of the The Washington Post it is easy to have an inferiority complex when I think of the residents of New York City and their local newspaper The New York Times.

Fortunately, the miracle of the Internet makes it possible for me to read the paper as often as I like and so I get the benefit of their excellent reporting.

The NYT has done an a great job reporting on sleep apnea... their overview of the condition is top notch -
Sleep Apnea - Symptoms, Diagnosis, Treatment of Sleep Apnea - NY Times Health Information

Yesterday, as a part of their series called patient voices, they published six accounts of people living with sleep apnea and the solutions they chose to deal with the condition -
Patient Voices - Sleep Apnea - Interactive Feature - NYTimes.com

Sleep apnea is a condition that affect millions of people in the United States and around the world. It is, I believe, a major contributor to the public health crisis that exists in this country. The Patient Voices piece helps to translate this disease from an incomprehensible number to six people. People like you and me... friends, neighbors and co-workers.

An important part of the work of awareness is making this condition real. I thank the Grey Lady for helping to raise awareness about sleep apnea by providing these stories in the voices of those living with it.

The sleep apnea smoking gun... so to speak.

2009-04-25T06:34:00.007-04:00

I subscribe to a wonderful web service called NAPS - New Abstracts and Papers in Sleep. It provides on a weekly basis a listing of all the recently published material on sleep apnea. I commend it all the folks out there who want to keep up with research.

I received notice of an article published recently in the journal Respirology.

The title of the study "Treatment of obstructive sleep apnea in Samoa progressively reduces daytime blood pressure." I am aware of the study because one of the authors, Dr. Colin Sullivan, alluded to it when he spoke in March at an event organized by the National Sleep Foundation.

Quoting from the objective listed in abstract: "To determine the strenght of the OSA-BP relationship, this study examined the effect of CPAP in a cohort where severe OSA and under-treated hypertension coexist."

Here is the conclusion and the cool part: "Hypertensive OSA patients can exhibit large falls in BP with CPAP at 1 month, with further significant (emphasis added) reductions at 3 and 6 months. Overall, the fall in BP was proportional to the initial elevation of BP with many patients achieving normal BP at 6 months."

During his talk in March Dr. Sullivan indicated that previous studies of hypertensives using CPAP had only shown small decreasing in blood pressure. In this study, the researchers were able to take a population (Samoans) where hypertension is particularly well-treated and manage their severe sleep apnea by eliminating it using CPAP.

All previous studies had included only people with mild hypertension so the effect size (the difference treating the OSA makes) is very small and not particularly significant.

The take-away from this study and why I refer to it as a smoking gun, is treating sleep apnea can save lives by reducing blood pressure and decreasing the risk of heart disease.

Keep using your CPAP and if you are taking anti-hypertensives, keep taking them, but talk with the doctor that prescribes them to make sure you are taking the right amount.

Sleep apnea/Snoring and your sex life... read about it here!

2009-03-26T09:43:00.003-04:00

http://www.snoringisntsexy.com/pdf/The%20Secret%20Sex%20Life%20of%20Snorers.pdf

Sleep Apnea and Healthcare reform... It is time to be heard.

2009-02-22T09:58:00.003-05:00

The American Recovery and Reinvestment Act , such as it is, has become the law of the land. The President and the Congress of the United States will now turn their attention to reforming the healthcare system of the country.

This is likely to be a long process... there are many stakeholders (read entrenched interests) whose voices will need to be heard before any proposal can be acted upon.

The American Sleep Apnea Association is asking apnea patients, their families, other affected parties, healthcare professional both in the sleep field and outside, to let our President and their Members of Congress know that untreated sleep apnea is a serious medical condition that has consequences far beyond the bedroom.

Click here to go to the ASAA advocacy page and let your voice be heard

American Sleep Apnea Association

2008-12-22T12:42:00.005-05:00

The end of the year is fast approaching and I ask readers of this blog to follow this link for an important message from the president of the ASAA.

I will be back soon with more on getting sleep apnea on the healthcare reform agenda.

In the meantime, best wishes for the holidays,

Ed

Snoring, Calories and Sleep Apnea... ripped from the headline

2008-12-16T16:02:00.005-05:00

It is interesting what sells newspapers or turns eyeballs on the Internet...

The results of a recent study published in the professional journal of the American Academy of Otolaryngology (Archives of Otolaryngology Head and Neck Surgery. 2008;134(12):1270-1275) presents information that people who snore burn more calories than people who don't.

Burning calories is good... if you can do it in your sleep, even better. But, if you look a little deeper you see why burning calories this way is not so good. The reason why overweight people are burning calories is that they trying to survive the equivalent of someone pushing a pillow over their face every couple of minutes while they sleep.

This would cause an increase in metabolic rate (in the form of an adrenaline rush) even in people of normal weight.

Bottom line... Read past the headline, snoring is not a new weight loss strategy.

What the news hounds missed was the announcement of a study, published in the Journal of Clinical Sleep Medicine (2008;4(6):543-550). The study involved data mining (not very sexy, but then neither is snoring) records from 278 public and 180 private hospitals in Australia.

The dataset comprised more than one and half million hospital records. Four percent - 60,197 patients had sleep apnea with the male to female ratio of 2.6:1 (holding pretty true to the numbers published by Dr. Terry Young, et. al in 1993).

The analysis of the hospital admissions (over the period 1999 to 2004) indicate that OSA patients are frequent users of health-care services with most involving cardiovascular disease, endocrine/metabolic diseases (diabetes) and other respiratory diseases.

The researchers were able plot data showing that the onset and peak occurrences of sleep apnea and obesity are the same. Two other interesting findings: that from the onset of obesity there is a latent period of five years for the development of hypertension and type 2 diabetes and 15 years for chronic ischemic heart conditions and that there is a distinct occurence peak between the ages of 55 and 59.

They say "that any press is good press" and I would tend to agree because it helps to raise awareness about a serious medical condition that affects a significant percentage of the population. But given the choice of what should get the attention of the popular media I would have to say the results of the latter study are more important than the former... with all due respect to Dr. Kezirian and colleagues.

Back soon with an Open letter to Secretary-designate Tom Daschle

What does the Obama presidency mean to the sleep apnea patient?

2008-11-16T15:57:00.014-05:00

I am not aware that President-elect Obama spoke directly to the question of sleep apnea during the campaign, but it is possible to infer from his major speech on the subject of health care and from his plan on health care reform some areas where the sleep apnea patient could benefit from the reforms he is planning.

Early in the plan he discusses the need to support disease management programs. He states "Over seventy-five percent of total health care dollars are spent on patients with one or more chronic conditions, such as diabetes, heart disease, and high blood pressure."

These are all co-morbid conditions with untreated sleep apnea. One wonders if early intervention on sleep apnea would not decrease the economic burden with these life-threatening conditions.

He goes on to say "[M]any patients with chronic diseases benefit greatly from disease management programs, which help patients manage their condition and get the care they need."

Obstructive Sleep Apnea (OSA) is certainly a chronic disease. For many it starts at a young age and stays with them their entire life. A life shortened needlessly because of cardiovascular disease.

OSA is a condition that would benefit from being treated according a disease management model. A model where there is a continuum of care from awareness through diagnosis/treatment and long-term follow-up. I offered an "ideal" treatment pathway in an 2007 article I wrote for Sleep Review.

Further in the same section of the plan Obama states that he "... will support providers to put in place care management programs and encourage team care through implementation of medical home type models that will improve coordination and integration of care of those with chronic conditions."

The challenge here is to get sleep apnea recognized as a chronic condition in which disease management strategy would be appropriate.

Elsewhere in the plan, Obama discusses moving away from paying physicians based on the volume of services provided and towards payment based on the quality or effectiveness of care.

For the OSA patient could mean something beyond just a reduction of the number of apneas and hypopneas. Effectiveness of care may be measured in improvement in resting blood pressure and elimination of daytime sleepiness.

He also discusses the use of comparative effectiveness reviews and research as keys to eliminating waste and missed opportunities for improved treatment.

As new technologies are developed for the treatment of OSA, comparative effectiveness research will help physicians and patients better understand which treatment will provide greater efficacy.

OSA is a chronic condition that affects all segments of our society, but it disproportionately affect the minority populations in the United States. Another element of the Obama plan is to tackle disparities in health care. If sleep apnea can be effectively diagnosed and treated, it will certainly accrew additional benefits, such as reduced health care utilization and improved quality of life. Finally, the health care reform proposed by the Obama campaign includes coverage for pre-existing conditions. This is an important benefit for the treated apnea patient who no longer need worry about continuing their treatment should they need to change insurance carriers.

Health care reform is on the agenda for the upcoming Congress, so change is coming. There is an opportunity for the reform to include sleep apnea. Seize the moment to let President-elect Obama know that recognizing sleep apnea is a serious condition and needs to be included in reform considerations.

Contact your Member of Congress and let them know that sleep apnea is a serious condition and needs to be included in health care reform considerations.

Contact your Senators and them know that sleep apnea is a serious condition and needs to be included in health care reform considerations.

The ASAA published a position paper on sleep apnea as a public health concern, click here.

All the best,

Ed

ASAA to award 2008 Sleep Apnea Awareness Award

2008-10-18T09:49:00.003-04:00

In recognition of their efforts to raise awareness about and the treatment of sleep apnea, the American Sleep Apnea Association (ASAA) will present Jonathan Benumof, M.D., and American Society of Anesthesiologists (ASA) with its 2008 Sleep Apnea Awareness Award on Tuesday, October 21 at the their annual meeting in Orlando, Florida.

"The concept behind this award is to honor individuals and organizations outside of the sleep community who promote awareness about sleep apnea," said Mr. Grandi. "It’s through such efforts that sleep apnea patients ultimately benefit."

Dr. Benumof was instrumental in developing the ASA’s 2006 Practice Guidelines for the Perioperative Management of Patients with Obstructive Sleep Apnea, which Mr. Grandi credits with serving as a crucial reference point for hospitals and surgical centers as they work to implement their own sleep apnea protocols.

In the early 1990s, Dr. Benumof became intensely interested in obstructive sleep apnea when he began to receive requests from lawyers to review cases that had perioperative catastrophic outcomes in obese patients who snored and were tired during the day. "As the number of inquiries increased, I became greatly impressed by the breadth and depth of the perioperative sleep apnea problem, and I concluded that it needed national attention and a guideline," said Dr. Benumof.

"We also want to recognize all the members of ASA for what they do," said Mr. Grandi. "We want to encourage them to be strong and empowered, to go out and tell the surgeons about sleep apnea and to work with hospitals on advocating for apnea patients and their families."

Founded in 1990, ASAA is the only non-profit organization dedicated to educating the public about sleep apnea and to serving people with this common disorder.

This is the second time the award has been given, said Mr. Grandi, and is presented only when accomplishments of exceptional merit have been recognized.

Celebrating the Father of Sleep Medicine

2008-07-26T20:20:00.004-04:00

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!

FYI

2008-07-04T09:42:00.014-04:00

After 10 years in the same location, downtown Washington, DC the American Sleep Apnea Association is heading uptown... Takoma to be exact.

The ASAA takes up residence at the Takoma Metro Centre,

6856 Eastern Avenue, NW

Suite 203,

Washington, DC 20012

effective August 1st.

The telephone and fax numbers will remain the same.

Exciting times at the ASAA... stay tuned!

Catching my breath...

2008-06-29T07:59:00.015-04:00

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.

The ASAA educational video - on Youtube

2008-04-15T14:23:00.003-04:00

Visit the ASAA web site for information on how to obtain a DVD copy for yourself.

The video is also available in Spanish.

Sleep Apnea Video premiere

2008-03-04T14:42:00.003-05:00

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

2008-02-24T09:59:00.001-05:00

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.

Preparing for Sleep Apnea Awareness Day 2008

2008-02-02T21:15:00.000-05:00

I started working for the ASAA in May of 2004. I realized soon after I got there that what needed to addressed sooner than later was updating the educational video the association had released in 1994!

It took some time and some doing, but it is almost finished. The completed video, which will be available on DVD will run 10 minutes and is shot in high definition. The video will have a prologue and an epilogue that can be used as PSA for television.

Currently the prologue is available on Youtube.

Our plan is to hold an event in Washington, DC during National Sleep Awareness Week, to premiere the video and then to take it to Minneapolis to where the largest A.W.A.K.E. group will be holding an all day event on March 6 - Sleep Apnea Awareness Day.

The video will feature prominently in the RSVP campaign which will be unveiled in the spring.

2008 is already shaping up to be a big year for the ASAA. Check back for more news on SAAD 2008!

ED

A new year and new challenges - testing for sleep apnea

2008-01-13T09:10:00.000-05:00

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.

Help the American Sleep Apnea Association

2008-01-05T09:03:00.000-05:00

The ASAA is participating in America's Giving Challenge sponsored by Parade and the Case Foundation. Please help us meet the challenge!

http://www.networkforgood.org/pca/Badge.aspx?BadgeId=109008

Back in a few days with exciting news and updates.

ED

Thanksgiving 2007

2007-11-22T12:49:00.000-05:00

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 ;) )

Notes from the ACCP meeting 10/2007

2007-10-29T04:58:00.000-04:00

I did not attend the ACCP meeting in 2006, so this was my first time since their meeting in Montreal in 2005. One thing I noticed immediately was the number of physicians from overseas. I had not thought of this professional society as garnering that much interest from outside the country, but it did. I relish the opportunity to share our educational materials with physicians from outside the US and to help them help their patients be more adherent to therapy.

A first for the ASAA in a long time was sharing a booth with our colleagues at the National Sleep Foundation. Unlike NBC4 at the DC Convention Center some years ago, they joined us and I feel it worked out well. We will share a booth at the American Public Health Association meeting in early November.

I was able to attend a few of the educational sessions. One presentation was an update of the consensus conference hosted by the ACCP Sleep Institute last year. The presenters described the process used to formulate the consensus and the initial results. Their hope is to publish the results in the Spring of 2008 and to hope a follow-up conference on implementing a continuity of care strategy for OSA patient next year as well.

A second presentation and where I stood up to comment, was on the screening of hospital in-patients for OSA - pro and con. The pro side was offered by Dr. Anne O'Donnell of Georgetown University and Dr. Barbara Phillips of University of Kentucky (and incoming chair of the Sleep Institute) argued the con side. Having just been to the Anesthesiologist meeting in San Francisco I did have a couple things to say... including how I was feeling the "love" from the anesthesiologists, more so than from the sleep doctors - it got a chuckle.

The third presentation offered an interesting insight. Dr. Peter Gay from the Mayo Clinic provided an excellent overview of the technological advances in continuous positive airway pressure therapy from when it was first created by Dr. Colin Sullivan in 1981. The title of his talk was "Industry and Sleep Physician: Rowing in the Same Direction?" His thesis is that the advances in PAP therapy have gotten ahead of the sleep physician/researchers. Changes in PAP sleep apnea treatment are being dictated by forces other than changes in physician's understanding of how to treat the condition. Interesting food for thought.

ACCP is in Philadelphia next year.

Email to a young OSA patient

2007-10-22T07:42:00.000-04:00

I got the following email today...

I am 31 years old and I have been told that I have sleep apnea, I currently have begun using a CPAP machine and just wanted to know will I have to use that device for the rest of my life and how do I become a memeber of the ASAA.

My thoughtful response at 7 in the morning...

Thank you for writing... the answer to your first question is hard. It depends a lot on why you developed sleep apnea... genetics (runs in the family), excess weight, naturally occurring narrow upper airway. I have heard of people losing a significant weight through improved diet, increased exercise and consistent use of CPAP being able to leave the machine behind... there are others who just feel so much better from getting a good night's sleep that it does not matter to them that CPAP has become a part of their nightly routine.

At this point... I would worry less about that and more about making sure you have the right equipment and are getting the most effective treatment possible. Hopefully it won't make a difference.

***********
News from the ACCP conference later... stay tuned.

Can you spell... an·es·the·si·ol·o·gist

2007-10-15T09:29:00.000-04:00

I am among the fortunate to have required general anesthesia only a couple time in my life and the second was after I had become the E.D. of American Sleep Apnea Association. The anesthesiologist, learning of my relationship to the association, came in before the procedure and talked my ear off (in a nice way) about the problem of undiagnosed OSA patients coming in to the ambulatory surgery center and she having to deal with them... meaning not be a party to their sudden or not so sudden demise after administering anesthetics.

It makes complete sense that an anesthesiologist would be concerned about an undiagnosed OSA patient. According to Dr. Johnathan Benumof, whose presentation I attended on Saturday, there are three points at which the anesthesiologist should be concerned about an OSA patient, treated or untreated... intubation - administering the anesthetic too soon may cause the airway to close thereby making it very difficult to put the breathing tube in the throat. Extubation - for the same reason, but in reverse and pain management, post operative... many of the opiod-type pain medicines can suppress breathing and with the OSA patient the problem is compounded.

Dr. Benumof's presentation to a nearly standing room only hall provided an excellent overview to OSA and explained, briefly the guidelines adopted two years ago by the American Society of Anesthesiology on management of the OSA patient.

I was able to attend a clinic forum where the case study was a man who is suspected of having sleep apnea come in to an ambulatory surgical center for repair to his rotator cuff. It was interesting to listen to their discussion, many of whom believed that the surgery, for a number of reasons should be done in a hospital setting where it would be possible to monitor the patient after the surgery... since the surgery itself is not the problem, but the pain management afterwards is.

Dr. Benumof admonished those assembled during his talk that they were likely the last physicians to see the patient and it was their responsibility to make sure they received the proper care. It is very true... on more than one occasion, the surgery has been a success, but the patient dies in the recovery room or "out on the ward" because they were not properly monitored or given the correct analgesia given their diagnosed and not announced or their undiagnosed obstructive sleep apnea.

For those with sleep apnea reading this... please say something before going in for surgery or a procedure requiring anesthetic (think colonoscopy)... click on the links below for more information. If you have not been diagnosed and it is clear from looking at you and asking a couple of telling questions that you are at risk of OSA... you may find yourself diagnosed before you leave the hospital after having surgery. Assuming you leave under your own steam and not feet first.

The conversations in the exhibit hall have centered on our most recent Patient Education Bulletins on CPAP in Hospital and the checklist. Our web site has more information for the anesthesiologist, but looking at it, it needs some work.

There is potential for great synergy with this group of doctors who are very interested in this subject. I will move it high on my list of relationships to explore.

Next week Chicago and the American College of Chest Physicians

PS... found in my fortune cookie after dinner last night... You could make a name for yourself in the field of medicine... nice thought!

Traveling to Mecca

2007-10-13T13:17:00.000-04:00

I am in San Francisco for the annual meeting of American Society of Anesthesiologists... our association has exhibited at their meetings for a number of years. They have always had an interest in managing the sleep apnea patient before, during and after surgery. In the past couple of years they have introduced a set of guidelines for managing the patients... so our presence here helps to reinforce the importance of identifying and managing apnea patients. This is the first one of these I attend, so it will be interesting. I will report on details in another entry.

On Friday, I went to what I call Mecca for the sleep field - the campus of Stanford University. I say Mecca, because it is the home of the Stanford University Center of Excellence for the Diagnosis and Treatment of Sleep Disorders. Housed here is the Sleep Disorder Clinic founded in 1970 by Drs. William Dement and Christian Guilleminault (both whom I have mentioned in this blog before). In addition to Dement and Guilleminault are world-renowned sleep surgeons Nelson Powell, Robert Riley and Kasey Li. Dr. Emmanuel Mignot, and the Stanford Center for Narcolepsy was the first to that narcolepsy-cataplexy is caused by hypocretin (orexin) abnormalities in both animal models and humans. With the School for Sleep Medicine, it is the center of the sleep universe.

While I was there I spent time with Bill Dement and together we attended the weekly Grand Rounds presentation. The subject of the talk by Craig Harris on hibernation and its relate to sleep.

Bill and I spent a long time talking about the course he has presented at Stanford to undergraduates on Sleep and Dreams. It is the most popular course with undergrads at the University. Bill would like to see the course taught at all 4,000 colleges and universities around the country – a tall order indeed. He has put together the course slides and the course textbook – The Stanford Sleep Book. My hope is to work with him to get the course offered at one university in the Washington area.

The treat of the day, was to attend Bill’s talk… Sleepless at Stanford, which he did for the alumni who had returned for Homecoming weekend. I heard this talk before, and I always marvel at the energy and enthusiasm of this nearly 80-year-old man. I can only hope to have this much verve when and if I get to 80.

On MySpace - social networking

2007-09-16T05:53:00.000-04:00

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.

Looking ahead... September & October

2007-08-26T06:29:00.000-04:00

September is promising to be a busy month for me. The updating of the video will be in pre-production, there is the script to review and rewrite, the location for the sleep lab sequences, the actors/participants. That all by itself would keep me plenty busy.

The American Academy of Otolaryngology - Head and Neck Surgery has its annual meeting in Washington, DC and I have made arrangements to meet with Dr. Ed Weaver who leads their sleep doctor group. I am hoping to get to the exhibit hall and review a the program of educational session to see who is talking about surgery and sleep apnea.

Later that same week I have meetings scheduled with the leaders of other organizations located in DC. A successful outcome in both meetings would be raising the visibility of the association and finding ways to partner with them to mutually advance our causes.

The week closes with a trip to Pittsburgh and the meeting of one of the councils of the American Trucking Association. Truck drivers are in the news these days and research shows they are at a heightened risk of developing sleep apnea. The trucking firm Schneider National has taken a pro-active approach to the problem by screening employees and providing for treatment.

The ASAA has the opportunity to make available our resources ie, patient education materials and the A.W.A.K.E. Network (and apneasupport.org) to the trucking company safety directors to help them help their employees at risk.

There is more travel in October... San Francisco for the American Society of Anesthesiology meeting and then Chicago for the American College of Chest Physicians meeting. I will be reporting on those when I am there.

I'll be back.

News and promises

2007-08-25T09:09:00.000-04:00

I have some exciting news to share with all those who count on the American Sleep Apnea Association to provide unbiased information on diagnosis and treatment on OSA... we have received a generous grant to remake our 1994 video "What is Sleep Apnea?" We are currently interviewing production companies and hope to begin production in September. It should be available just time for holiday gift-giving.

Updating the video has been on my list since I got to the association three and a half years ago - yeah!

The other important news of the day concerns our online support group - http://www.apneasupport.org/. Due to serious limitations with the current web hosting company's capacity to handle the increasing traffic to the site, the site co-adminstrator had to make an emergency move to a new host.

He handled the transfer of the incredible amount of wisdom accumulated over the past two year from contributors to the forum with the flawless grace of an NBA All Star shooting from the outside with only seconds to play... thank you Mike.

The new home of the Forum, which is on downtownhost.com, is now on a dedicated server and is faster than greased lightening. It is able to accommodate a much higher level of traffic without the usual degradation in speed. Recent statistics already show an increase in visitors, pageviews and new subscribers. If you have not been in a while or not at all... check it out, you won't be disappointed in what you can learn there.

On a side note... we get tons of email at our main email address - asaa@sleepapnea.org, sadly much of it spam, but that is the price of having your email address out there for folks to access with questions and comments. Looking at it last week, along with the usual inquiries, there was a message from a anesthesiologist in Kuwait looking for ways to work with the ASAA to help his patients, a jounalism student from Denmark doing research on sleep apnea in America looking for an expert sleep researcher to help him, and a former A.W.A.K.E. coordnator now residing in Singapore who is interested in setting up an A.W.A.K.E. support group there. One word - wow!

Now the promise, since my friend and colleague Dr. Breus has added me to his blogroll and I suspect that there may be others (thank you Michael and thank you everyone else)... I will commit to being more intentional about writing in this space on a regular basis to report on my doings and the work of the association.

These are exciting and very busy times and I am pleased to share our successes and challenges with all those who take the time to read this.

I'll be back.

Good Night, traveling to NYC

2007-07-16T07:46:00.000-04:00

Traveled to New York City over the weekend to be in the audience for the taping of an upcoming PBS special on sleep.

Hosting the broadcast is Dr. Michael Breus, author of Good Night.

My interest in particpating was two-fold: I wanted the opportunity to meet with Michael. I suspected he knew about the ASAA, but wanted to let him know that I was interested in the work he is doing and wanted to find ways where we could work together.

The second was I was interested in learning about producing a PBS special. I haven't spent time in a television studio and this was a chance to see how all that works.

I am pleased to say that it was a sucess on both counts. I had a great conversation with Michael and I am confident we can find ways to help each other while raising awareness about sleep apnea. I also met the executive producer of the program and talked about doing more on sleep.

All in all, it was a productive trip... stay tuned to see what happens.

ED

Conversations on sleep apnea

2007-07-11T12:15:00.000-04:00

Earlier this year I recorded an interview with John McEuen when he was in Washington,DC to perform at Wolf Trap.

Interview with John McEuen

My interviewing style needs work, but I think he got his point across... got sleep apnea? Get treated, feel better, a lot better.

Enjoy,

ED

Shame on Nancy Grace

2007-07-10T09:55:00.000-04:00

Nancy Grace on her program that aired on July 9, 2007 said the following (emphasis added)-

GRACE: They said that Johnny Grunge -- Mike Durham -- he wrestled under the name Johnny Grunge, very, very well-known -- died of sleep apnea. Please. Stop. That`s basically snoring, and you know, not breathing for a few seconds periodically through the night. You don`t die of sleep apnea. That is complete BS.

It is comments like hers that makes my job so hard. When people fail to acknowledge the seriousness of untreated sleep apnea, there are those in denial that will say... it is no big deal, just deal with it.

Not only is the health of the sufferer compromised with increased risk of cardiovascular disease,hypertension and metabolic syndrome (to mention only a few), but so is the health of bed partner and other members of the family.

If you are as alarmed as I am with Nancy Grace's comment, write to her and let her know she is wrong...
http://www.cnn.com/feedback/forms/form5c.html?24

efg

APSS 2007 ... the sleep meeting

2007-06-12T23:57:00.000-04:00

The annual Sleep meeting is the most important medical conference the ASAA attends each year. It is so for a number of reasons... not the least of which is to see who is there and to be seen by the other organizations that attend. Not to be at the APSS meeting, especially if you represent a sleep-related disorder, leads one to wonder if there is a problem. Happily, the ASAA was present in full force... including some volunteer patient members of the association. Thanks to Robert and Jean, Lionel, Bob and Jim for helping at the booth during the three days of the meeting.

The annual meeting is also an opportunity to bring together representatives of the Industry Roundtable, the corporate supporters of the ASAA. It is our practice to have a speaker on a topic of interest to the members. Our hope is to expose them to something they might not otherwise hear about in the sleep apnea field (without a lot of looking). I was fortunate to have Dr. Susheel Patil from Johns Hopkins Hospital on hand to speak on a subject he has done extensive work on and had published a study in the Journal of Applied Physiology. He gave an excellent overview of the subject.

There are many treats to attending the Sleep meeting. Among them this time was visiting with Colin Sullivan and meeting his wife Janette. I thoroughly enjoy talking with him and wish him only great success.

I was not able to attend as many of the educational sessions as I had hoped. But an important one was on portable monitoring of suspected sleep apnea. A majority of the presenters were associated with Veteran's Administration hospitals and they had, due to the sheer number of patients needing to be seen, developed a protocol incorporating at-home studies for diagnosing sleep apnea. Dr. Nancy Collop chaired the session and she is also the chair of a task force organized by the Academy of Sleep Medicine on this subject. The task force is to due report thei findings later this year. A highlight of the meeting was when William Dement introduced Colin Sullivan as the one person who made it possible for everyone in the room to do what they do... there was a standing ovation for him... way cool.

Something new this year was leading a discussion group with Dave Hargett, ASAA Board Chair, on improving patient adherence to therapy using the support group model. I enjoyed the opportunity to present information to interested sleep techs.

A number of good conversations with a number of people and so, a productive meeting for me. The next Sleep meeting is closer to home in Baltimore next year.

I get a bit of a respite for the summer before we conclude the season with three meetings... Anesthesiologists, Chest Physicians and for the first time under my watch... the American Public Health Association.

I'll be back.

ATS 2007 wraps up / APSS 2007 soon begins

2007-05-22T19:26:00.000-04:00

The ATS meeting did not disappoint again this year... it never does!

Here are a couple of the interesting presentations I was able to attend...

Are patients with sleep apnea at risk for cardiovascular morbidity and mortality? This talk was presented by J.R. Stradling, MD from Oxford England. Professor Stradling is associated with one of our sister organizations The Sleep Apnea Trust.
Professor Stradling's presentation brought a hush to the room, which I found surprising until I listen to what he had to say and spoke with others who are familiar with his talks. He is well known for taking a critical look at current research and suggesting that it is not as solid as the authors would have you believe.

Heavy snoring as a cause of carotid artery atherslerosis. I was very interested in this presentation because it highlighted something I had discussed with Colin Sullivan last year concerning the potentially harmful effects of snoring.
Quoting from the conclusion of the study "In addition to known risk factors (age, gender, smoking hypertension), snoring (independent of nocturnal hypoxia and apnea hypopnea index) is a specific risk factor for carotid atheroscleotic plaque only. Snoring exerts a local pathogenic influence on arterial plaque formation, possibly via chronic carotid artery wall vibration."

One is left wondering if there is such a thing a benign snoring. Hopefully there will be follow-up on this study.

While this series of presentations was taking place, Dr. Alan Pack from the University of Pennsylvania Division of Sleep Medicine was presenting the Clinical Year in Review for Sleep Medicine. He highlighted four studies that he thought were particularly noteworthy.

1. Chronic intermittent hypoxia induces athersclerosis (Am J Resp Crit Care Med - in press) Important study since it is first study to directly demonstrate that chronic intermittent hypoxia (IH) plays an atherogenic role. But, the study infers that IH alone is not sufficient since in this case it also required a high cholesterol diet. The frequency and magnitude of IH in this study is fairly large. Future studies will need to establish dose response relationship to see the what frequency and magnitude of desaturations will produce atherosclerosis.

2. Diagnosis and initial management of obstructive sleep apnea without polymongraphy. A randomized validation study. (Ann Intern Med 2007; 146:157-66) The study demonstrated that similiar improvement in reduction of Apnea-Hypopnea Index (AHI) and sleepiness (using the Epworth Sleepiness Scale) between patients using the traditional in-lab polysomnography and a group using an auto-titrating CPAP to determine the required pressure to treat their apnea. Noteworthy was that patients in the auto-titrating arm has greater compliance than those in the traditional arm.

3. Impaired performance in commercial drivers. Role of sleep apnea and short sleep duration. (Am J Respir. Crit Care Med 2006;174:446-54) This was the largest, most in-depth study of performance and its determinants in commercial drivers. The study showed that a substantial percentage of drivers in the the sample had performance impairments. The major determinants of performance impairment and excessive sleepiness were severe sleep apnea (AHI > 30) and short sleep duration (< 5 hours). 4,500 people are killed each year in crashes involving commercial drivers. Treating the sleep apnea could reduce that number.

4. Didgeridoo playing as alternative treatment for obstructive sleep apnea syndrome: randomized controlled trial. (BMJ 2006;332:266-70) Dr. Pack noted that this was a provocative study, but that due to the small sample size(n=25)it could be a false positive result. And while it is very unlikely to be used clinically, the study does raise an interesting new concept for treatment od mild disease. Finally, he said that it is of interest that both CPAP and the didgeridoo are Australian inventions.

I am usually fortunate to have help in the booth in the exhibit hall. The day can get awfully long standing there by yourself. Earlier this year I made a point of announcing the conferences where we would be exhibiting in the ASAA newsletter and asking for volunteers. Several people stepped forward and offered to help.

Thanks Dean Dizikes and Rob Flandermayer for their help at the booth and offering the patient's perspective to those with questions about sleep apnea.

For the third year in a row the ASAA has provided patient speakers to during one of the symposia on sleep disorders. This year Ruth Kwitko Lym provided her insights into sleep apnea to an assembly of physicians.

Working in the exhibit hall is always interesting, particularly at the ATS show. Physicians and researchers from around the world stopping by to see what we are doing to help doctors help their patients. There is much interest in helping to establish branches of the ASAA in other parts of the world.

I will close out my fourth ATS conference with a note thanks to the members of the Respiratory Neurobiology and Sleep Assembly of the ATS for letting me join them for their Assembly dinner and to ask them not to lose heart, that we at the ASAA are working diligently to raise the money necessary to participate in the matching grant program.

On to the Twin Cities and the Associated Professional Sleep Societies (SLEEP 2007) meeting... stay tuned for news from there.

On the road again - ATS in SFO

2007-05-20T07:29:00.000-04:00

This my fourth international conference of the American Thoracic Society (ATS). The ATS meeting was the first medical conference I attended as executive director of the ASAA back in 2004.

The ASAA participates as an exhibitor at medical conferences like the ATS meeting as one of the ways we stay in touch with medical professional - in this case those involved in research on sleep disorders like sleep apnea. It is important that physicians, especially research doctors don't lose touch with the patients they are treating.

We are fortunate to patient volunteers interested in helping staff the booth and to speak with the doctors.

This meeting in particular provides an excellent opportunity to learn what is on the cutting edge of sleep apnea research. I will be pouring over the book of research abstracts for interesting posters to review.

Check back for updates over the next couple of days.

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

2007-05-05T08:18:00.000-04:00

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

Sleep Apnea Awareness Day 2007 - wrap up

2007-03-22T14:10:00.000-04:00

The 3rd annual Sleep Apnea Awareness Day lecture was held... here is the link to the page on the ASAA web site with the link to the lecture - www.sleepapnea.org/saad2007.html.

The speakers at the event were excellent. And while the attendance at the event was less than it might have been, we do have it video recorded and available to anyone with access to the Internet.

I must say though, it is a lot of work putting this together and the spent on this was time taken away from other equally important activities. But this was important and now it is done.

There was some serendipity this year that made SAAD 2007 special. I had the pleasure of sharing parts of it with members of the ASAA Board. I got to know Terry Young, noted researcher in the field of sleep apnea.

We were able to participate with the National Sleep Foundation in visits to Capital Hill in support of additional funding for CDC for sleep and sleep disorder surveillance... which will do more with in our legislatative action center.

On top of everything that occurred during Sleep Awareness Day - our newest Board member Nancy Rothstein did a read-a-loud at a local elementary school. It was a treat.

Big things are on the horizon... I will be back to report on these doings, soon.

The road to Sleep Apnea Awareness Day 2007

2007-03-04T08:02:00.000-05:00

Readers of this journal know there are many interesting aspects of my work as an executive director... but planning an event like the Sleep Apnea Awareness Day (SAAD) lecture is the most challenging.

After last year's less than spectacular event, I did not retreat. I rethought, and with the benefit of the collective wisdom of our Board of Directors, redirected the focus of the lecture.

Perhaps the biggest problem for "us" in the sleep community is "translating" the incredible research done by the sleep researchers into content that is accessible to the layperson. What good are the findings of the studies if they remain locked up in a prestigous, but inscrutable medical journal.

The idea of bringing what is known from sleep research to the general public is what the lecture should be all about. In Washington, DC, where we make our home... the public can include policy folks from trade and professional associations as well as members of Congress, their staff and members of Federal agencies.

Dr. Terri Weaver's presentation on snoring and sleep apnea: the effects on the family will do that on Wednesday. Words will never fully express my gratitude for her willingness to share what she has learned with those will assemble this coming week.

That adjustment alone will be a guarantee of a successful lecture. But this year we will stretch and add another dimension to the proceedings, personal experiences.

We have the good fortune to have a new member of our Board of Directors Nancy Rothstein, who, has in the past year, become very active in raising public awareness about the negative effects of snoring and sleep apnea. Her experiences are captured and elegantly depicted in a children's book My Daddy Snores. She will provide the introduction.

We also have the good fortune to know Ashley Keenan, a young woman who willing to share her experience with sleep apnea.

I think it is fitting there are three women speaking at the SAAD lecture, in light of the National Sleep Foundation's National Sleep Awareness Week (r) theme of Women and Sleep.

I hope those of you can attend the event on Wednesday March 7th will, and those of who can't will take the time to view the proceedings when the webcast link (funded by a generous donation from the American College of Chest Physicians - Sleep Institute) is established.

I'll be back with a report on how it went... don't touch that dial, er, mouse.

Sleep Apnea Awareness Day(s) 2007

2007-02-11T05:49:00.000-05:00

There are less than 30 days until March 8, Sleep Apnea Awareness Day during National Sleep Awareness Week. Of course, every day should be sleep apnea awareness day... we take the opportunity during the week before the time change when we "spring forward" an hour to focus attention on sleep apnea.

I am pleased to announce there will be a Sleep Apnea Awareness Day lecture. This year it will be held on March 7. I am especially pleased to announce that Dr. Terri Weaver nationally recognized researcher on sleep disorders will be speaking on snoring and sleep apnea the effect on the family.

Dr. Weaver's lecture will be preceeded by introductory comments from Nancy Rothstein, ASAA Board member and committee chair for the SAAD 2007 event. Mrs. Rothstein is the author of a recently published children's book and accompanying web site My Daddy Snores .

A new feature of this year's lecture will be comments offered from the patient's perspective. In keeping with the National Sleep Foundation's theme of women and sleep, speaking will be a young woman who does not fit the profile of an apnea patient. Not fitting the profile led to misdiagnosis and incorrect treatment. Fortunately she found a physician who prescribed a sleep study and with the introduction of CPAP therapy turned her life around.

The lecture will be in Washington, DC and we hope to offer it to a wider audience by means of a webcast. If we are successful there will be a link from the main ASAA web site.

Other scheduled activities for Sleep Apnea Awareness Day 2007 in Washington as well as elsewhere in the United States conducted by members of the A.W.A.K.E. Network of support groups are listed in special notice on the main site.

I hope you can join us, in person or spirit. Please use the occasion of Sleep Apnea Awareness Day to raise awareness about a very serious and very treatable medical condition.

Happy New Year - 2007

2007-01-01T07:40:00.000-05:00

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!

National Patient Sleep Conference

2006-11-04T07:25:00.000-05:00

What I report on here are generally the medical conferences I attend, but the last weekend in October I had the pleasure of participating in something entirely different... the first ever conference on sleep disorders oriented to patients.

The event was organized by Talk About Sleep, an online distributor of CPAP equipment and longtime sponsor of message board support group of the same name.

Our part in the conference was to secure some of speakers for the sleep apnea break out session and to publicize the event broadly. I was fortunate to get David Rapoport to speak. He gave his talk to the apnea patients as well as the sleep techs who there for a continuing medical education program. Also participating was Colleen Bazzani, who is the director of patient education for a large hospital in Minneapolis.

In addition to David and Colleen presenting in the OSA breakout sessions was Sleep Dentist Gail Demko, who provided an excellent overview of oral applicances for the treatment of sleep apnea. Thinking about it now... I realize that what was missing was a presentation on the role of surgery in the treatment of OSA (something to keep in mind for a future conference).

The attendance at the conference was less than what the organizers had hoped for, but those who were there were very interested in learning more about their condition. At the dinner presentation hosted by ResMed, David Rapoport and shared a table with an apnea patient from New England. He was frustrated by the care he was receiving at home and came searching for more information. Knowing more, he could be proactive in his care instead of reactive. Empowerment... that is what it about.

An important example of empowerment was Dr. Matthew Abraham's presentation on understanding your sleep study. Certainly, a presentation like this is a must for any future conference.

The general session on Sunday morning led off with Dr. Dement ( Cl ic k here for Dement post from Sleep meeting ). Bill provided an overview of his work in the field of sleep research. It was clear the audience thoroughly enjoyed his talk and there were many lined up for to autograph is his book The Promise of Sleep.

Life is all about serendipity. As I was getting on the elevator at the hotel I met Mark Bronstein, an attorney who would be speaking about sleep disorders and disability on Sunday. Turns out that he answered questions in the Ask the Lawyer column that ran in the earlier incarnation of the ASAA newsletter. I was happy to meet him and we agreed to working together in the future.

It is not for me to judge the first National Patient Sleep Conference... but this I can say - the conference provided an excellent opportunity for motivated patients to learn more about their condition and to share experiences that might not otherwise be able to do on a local level.

I look forward to a future patient conference.

WCSA - Finale

2006-10-05T14:40:00.000-04:00

It was a lot of information to take in, at least for me, in a short period of time. But it was worth the effort. It is food for thought that will inform how I think about sleep apnea in part, anyway, until the next World Congress in Seoul, South Korea in 2009.

I made a point of introducing myself to the president of the organizing committee and letting him know that we are interested in participating... perhaps bringing together representatives from other sleep apnea patient organizations from that part of the world to talk about working together on issues of common interest.

I got something of a confused looked, but he appreciated receiving my card and said we'll be in touch.

After the meeting was over, Dave Hargett and I had dinner with Colin Sullivan (picture on the left).What a treat! Colin supports the work of patient groups like ours and stated plainly that it is frequently patients that drive advances in the technology. We had a long talk about how the apnea patient is perceived and that there is nothing funny about snoring or manifestations of excessive daytime sleepiness. The incorrect notion that the apnea patient have brought this condition on themselves, perhaps held back beginning to tackle this serious issue sooner.

After dinner, Colin took a few minutes and gave a brief interview (about eight minutes) about what he is working on now.

Conference was a success for me on a number of levels. Professionally, it was an opportunity for me to listen, learn and discuss sleep apnea intensively and to realize I get it... to some larger extent (no, I am not ready for the test). Organizationally, the ASAA was present and visible on the world stage, copies of our newsletter with the profile of Colin was distributed to every attendee. We were mentioned in several talks. Personally, it was success in that I had the opportunity to meet and get to know a truly great human being - someone worthy any and all accolades humanity has to bestow on one of it own: Colin Sullivan.

Next - The first National Patient Sleep Conference - Bloomington, Minnesota

WCSA - sessions

2006-10-03T08:08:00.000-04:00

Have you ever heard the expression - an embarrassment of riches? Well, for this relatively new student of the field - I can't be too new, when I can say that I ran into people that I had seen, not once, but three times in the past month - there was so much information I am still processing it as I write this entry.

There were a number of different tracks to follow - my interest was more on treatment than the basic science. The basic science is important, but people contacting the ASAA are looking for treatment alternatives.

There was however one session on basic science that I was particularly interested in attending - Session 014 - Control of ventilation and upper airway patency. One speaker, Dr. Andrew Wellman spoke about loop gain - I can't begin to explain it, but here is a link to an abstract of article published in the back in 2004 - "Blue Journal"

All I can say at this point is that this is important, and with careful study I will understand (and yes there will be a test at the end - lol).

There were sessions on oral appliances, bariatric surgery, oral surgery... not ground-breaking stuff, but as David Rapoport, a member of the ASAA board, suggested,what was said stirred up his thinking about these issues and will likely help him move in new directions.

There were two other sessions that I will comment on - Session - 017 Lifetime care of the sleep apnea patient with obstructive sleep apnea. The co-chairs Dr. Phillip Westbrook and Dr. Meir Kryger. Among the presenters were David Rapoport who offered an interesting presentation on "What patients are we talking about?" He challenged the audience to think about defining patients in a different way than has been done traditionally. It is not just a question of respiratory disturbance or sleepiness... but both. David will likely revisit this discussion at his presentation during the National Patient Sleep Conference in Bloomington, MN at the end of the month.

It was during this session that A.W.A.K.E. support groups was mentioned by Dr. Lawrence Epstein in his presentation on caring for patient after the diagnosis is made.

Dr. Westbrook, who is one of the many "fathers" of sleep medicine came up with a list of "What the patient should know" based on his extensive experience. I offer them here in abbreviated form:

Always inform your doctors you have OSA - especially surgeons
Make sure your spouse on the details, so he/she can communicate them if you can't
Avoid narcotics they make apnea worse
Avoid alcoholic beverages - use in moderation if you must
Avoid or use caution using sleeping pills
Quit smoking
Avoid sleeping at high altitudes - above Denver's
Avoid using machinary (including cars) until treated
Bring CPAP to hospital - especially for surgery
Lose weight
Get a yearly examine to monitor blood pressure and for the presence of diabetes
There was a slide of Humpty-Dumpty lying on a psychatrist's couch and the doctor is telling him to avoid sitting on walls.

I should also mention that Dr. Guilleminault chaired a session on Upper Airway Resistance... I was hopeful to learn more - I remain confused.

Finally, there was a debate on the topic of portable monitoring for diagnosis of sleep apnea. It pitted Dr. Neil Douglas from Scotland who is favor against Dr. Nancy Collop who spoke against it. Notwithstanding the documentation presented by Dr. Collop... the audience found for Dr. Douglas - though noone's mind was changed by the presentation... hmmm, interesting.

The ASAA was mentioned a second time, during the debate. Dr. Collop mentioned in passing that the letter to the editor published in the July issue of the Journal of Clinical Sleep Medicine did influence the AASM to issue an interim postion statement of the use of portable monitoring - YEAH! Oh, and the Institute of Medicine report influenced them as well.

I just touched the surface of the three days in Montreal and have not mentioned the posters. I will say that this was a rewarding experience in the information received, people met and connections established and the sense that I am where I need to be.

Next, after the conference.

WCSA - plenary sessions

2006-09-30T06:21:00.000-04:00

When it was advertised as a world congress... they weren't kidding. 1015 participants from 44 countries representing every continent... WOW.

Interesting there are a number of people here who I have seen recently... in fact three times in the last month. I guess I am really in the business now.

The plenary sessions, when all of us are gathered together have been particularly impressive. Peretz Lavie offered a historical perspective on obstructive sleep apnea - identifying a number of oversights of history. It was wonderful to hear him recount the stories. I had read about many of them in his book Restless Nights. Here is a link to Amazon from our web site - http://www.sleepapnea.org/resources/books.html. This is a great book if you are interested in the history of this "medical mystery." Dr. Lavie will provide me with a copy of the slide set and my hope is to put the timeline of events on the ASAA web site with links to the historical documents... maybe a whole interactive history.

The second plenary presentation... yesterday was by Dr. Charles George on the social and societal outcomes in (from) sleep apnea. A more traditional presentation in the form a review of the literature. It has been well documented, perhaps not well annouced to the whole world, that untreated sleep apnea has a negative effect on the bed partner, increases the number of auto accidents and increases significantly the cost of healthcare. Dr. George was the lead author on the study on sleep apnea in NFL players.

The third plenary session is today. The speaker is Colin Sullivan, the author on the first paper published on the uses of CPAP for the treatment of obstructive sleep apnea. I have had several opportunities during the conference to talk with Dr. Sullivan, who is a rather modest unassuming man given the impact that his thinking has had on so many people around the world. An interview with him is the lead story in a combined spring/summer newsletter we published this year.

Next time a report on the sessions and the posters.

8th World Congress on Sleep Apnea (prelude)

2006-09-27T06:31:00.000-04:00

I don't remember when I first heard there would be an international meeting on sleep apnea in Montreal this year. Doing some research I learned this meeting takes place every three years.

Unlike other medical conferences I have attended since becoming executive director of the ASAA (not that I attended any before), this meeting is devoted exclusively to sleep apnea - diagnosis, treatment, co-morbidity implications of untreated OSA - WOW.

Here is a link to the schedule http://www.wcsa2006.com/week.htm

I chose not to particpate in this event as an exhibitor like our colleagues at the National Sleep Foundation, but rather to be an attendee. First, the cost exhibit was way more than the association could afford on top of the expenses of getting there. Secondly, participating as an attendee would allow me greater freedom to learn, meet, discuss without being tied down to the booth.

Looking at the program, there are a number of fascinating presentations... unfortunately some occuring at the same time. While I can't be in two places at once; I have the benefit of our board chair Dave Hargett being along so we can divide them up.

My plan is report here on what I learn during the conference... share the odd photo if I can manage and if I am really succesful get some interviews with presenters and have those available for people to hear.

I do have an organizational objective in participating. I would like to see formal participation in future conferences by patient groups like the ASAA from around the world. Not quite sure what that would look like, but I have a couple days to figure that out.

Stay tuned for more.

Continuity of Care Conference in Northbrook

2006-09-14T06:20:00.000-04:00

Imagine if you could bring together physicians who specialize in treating sleep apnea,the folks that work with the physicians (sleep techs), the manufacturers who make the machine to treat the more severe cases (CPAP devices), the companies that distribute the machines (HME or DME), patients who have sleep apnea and the odd non-profit executive (NSF and moi) to talk about what is the BEST way to be certain the patient receive the CARE they need... well that would be one hellava conference and could with any luck at all really make a difference in the lives of those who need treatment for sleep apnea.

It happened... last weekend and I was there. Did the heavens open up and we experience an epiphany that provided us with the answer to all our questions? No, but it was definitely a start.

The American College of Chest Physicians - Sleep Institute hosted the meeting at their offices on September 8 and 9. Representatives from the groups listed above, yes, including patients came together in an attempt to come a consensus on the most appropriate continuity of care for the OSA patient... from diagnosis and beyond.

The idea for the conference came from Dr. Charles Atwood, Chair of the Sleep Institute within the ACCP. Here is a picture of me and Charlie at the Sleep Apnea Awareness Day lecture earlier this year. The idea for the conference came to him three years ago to put something like together. I hope when all is said and done, patients will remember to thank Charlie for putting forth the effort that started the ball rolling.

The results of the conference will be reported after further analysis of the small group work done during the meeting. It is likely to be sometime next year before we see anything in print.

I can say that their several areas of general agreement - sleep apnea needs to be reclassified from a acute disease (treat it and the problem goes away) to a chronic disease (a condition that requires some ongoing attention) - if those who are responsible for paying for care (ie. insurance companies and Medicare) understood this and looked at how those who are compensated for diagnosis and ongoing care - adjusting the compensation according - that alone would make a big difference - A Big Difference.

Another area of agreement was education... everybody could use more education. In this case, we aren't talking about awareness, which is also important, but physicians (sleep and primary care), home care providers and patients understanding what each is supposed to do to make certain the condition is effectively treated.

I had a great weekend last weekend... I had a chance to think about, talk about and perhaps contribute in a small way to improving the care of those with sleep apnea.

Next stop... Montreal and the 8th World Congress on Sleep Apnea.

Traveling to Milwaukee

2006-08-10T06:51:00.000-04:00

Public speaking is not something I do very often, though suspect that will change... and will, thanks to friends of the ASAA.

I traveled to Milwaukee earlier this week at the invitation of the Reggie White Sleep Disorder Research and Education Foundation. They held a fundraiser - their first, and wanted someone to speak on the seriousness of sleep apnea as a medical condition. The idea was to inspire the attendees to contribute more... here is the text of my remarks, you decide:

I suspect Reggie would be surprised to know of the influence his too early departure has had on the thousands of people who suspect they suffer from sleep apnea, as he did. Since Reggie White’s death, I have received hundreds of calls asking about sleep apnea and mentioning his passing as the motivation for the call.

Sleep apnea is a chronic medical condition that affects at least 20 million Americans. Sadly, we estimate that about 90% of those who have symptoms of sleep apnea remain undiagnosed and untreated; of great concern to us is that people of color are disproportionately afflicted.

Sleep apnea is what I call a portal disease. It is a condition that left untreated, leads to, or in some cases exacerbates, potentially life-threatening illnesses. The list of co-morbidities gets longer and longer with each new study that is published – cardiovascular disease can lead to heart attacks, hypertension to stroke, metabolic syndrome to diabetes and obesity, to name only a few of the more serious.

When sleep apnea is untreated, others suffer as well. This is particularly true when one partner snores…snoring is a common symptom of sleep apnea, though not everyone who snores has the sleep disorder. According to a recent poll by the National Sleep Foundation, two-thirds of partnered adults say their partner snores. It is not uncommon for one bed partner to be disturbed, and lose sleep, because the other bed partner snores. In addition to the snoring, the patient with untreated sleep apnea is probably waking up many times during the night because of apneic episodes – pauses in breathing during sleep. These too, can disturb a bed partner. The poor sleep that results for both bed partners can have a devastating impact on social and personal relationships, including intimacy.

There are other consequences of untreated sleep apnea that extend beyond the immediate family and into the community and to some extent the entire country. Because of interrupted sleep, people with sleep apnea often experience excessive daytime sleepiness. This can mean higher costs to employers because of lost time and decreased productivity. Our roads are made more dangerous because of an increased risk of people with sleep apnea driving while drowsy or, even worse, falling asleep at the wheel.

Recognition of sleep apnea in people in its more serious manifestation is uncomplicated. I will repeat the hallmarks - - persistent/loud snoring, noticeable pauses in breathing during sleep and excessive daytime sleepiness.

Currently the diagnosis of sleep apnea requires an overnight polysomnographic examination, or sleep study. The result of the study is the apnea-hypopnea index or AHI and the level of severity determines the most appropriate treatment options. The sleep study is a painless procedure that can be a life saver.

For the most severe cases of sleep apnea, the only truly effective treatment is continuous positive airway pressure, or CPAP therapy. This involves a small machine that delivers ambient air at a constant pressure through a hose connected a mask that fits over the nose and/or over the mouth.

As a side note – 2006 is the 25th anniversary of the publication of a study showing Continuous Positive Airway Pressure to be an effective therapy for sleep apnea.

In my capacity as executive director of the American Sleep Apnea Association I have the opportunity to speak with many men and women at varying points along their treatment path. For everyone I speak with who is struggling to get diagnosed, treated, or stay with treatment; I speak with people who feel their lives were given back by getting treated. Many are upset that they did not get treated sooner. I can also report there are those who have reduced or eliminated other medications they take because their sleep apnea is treated. So there is reason for hope.

One man told me that given the choice between his machine and his wife, he would take the machine. Another man expressed the feeling of exhilaration of getting a good night’s sleep. A woman expressed a sense of relief that her husband was breathing through the night and now she was able to sleep as well.

Thank you again for the opportunity to speak with you this evening and please give generously in memory of Reggie White, Green Bay Packer #92, and help the Reggie White Sleep Disorders Research and Education Foundation to accomplish its important work.

I was concerned that my speech would be lost while people were looking at the silent auction items, eating and drinking. When I was introduced as someone who had such a passion for helping those with sleep apnea that I am considered an honorary hosehead the room fell silent and I delivered my message.

Another reason I accepted the invitation to speak at this event was the opportunity to meet and speak with Sara White, widow of Reggie White. I wanted to thank her for her efforts to raise awareness about sleep apnea following the death of her husband. I did that and even managed to get a grainy image of us gripping and grinning.

The most moving part of the evening came near the end when Sara's daughter, Jecolia sang a song she had written for her father.

The Reggie White story is far from over - in some quarters there is the feeling that is just getting started.

The ASAA will stay close to developments and will lend our resources to continue to raise awareness about sleep apnea.

Being in Washington has its advantages...

2006-07-25T06:22:00.000-04:00

Say what you will about being in the craziness that is our Nation's Capital, but (living and) working in Washington, DC does have certain advantages that folks living in other parts of the country can only dream about... for example:

A couple weeks back I learned that Surgeon General Carmona would be speaking at a National Press Club (NPC) luncheon. The luncheons are frequently televised on the cable channel CSPAN. The NPC is about four blocks from my office. I sent an email and reserved a space at the luncheon and went. Not having heard the S.G. speak before it was a excellent opportunity to learn what his goals are and to hear them from his mouth and not some press release. It was also the chance to establish a personal connection with the man, not so much to make my case for the importance of diagnosis and treatment of sleep apnea as the way to cure the ills of the nation... but close.

Moments like this do occur elsewhere in the country, just not as often and when they are four blocks away and they can benefit the cause... I will jump on them PDQ.

What will come of this opportunity is still be determined, but being able to say...you may remember me from the NPC luncheon earlier this month and I wanted to follow up on something you said... gives you a leg up for sure.

09/27/2006 - Update

I learned not too long after this presentation, Dr. Carmona stepped down as the Surgeon General - evidently he differing points of view on the question of tobacco with his boss - oh well. There seems to be some interest in S.G. office on the issue of sleep, now if we can only get them to focus on sleep apnea.

Sleep 2006 part four - wrapping up

2006-07-23T07:36:00.000-04:00

A couple of other items to mention before closing out the 2006 Sleep meeting...

The poster session - I mentioned in the past the importance of viewing the posters to get a head's up on where research is going. The Sleep meeting had numerous posters of interest. Viewing them gave me an idea... one that I am in the process of working out now (stay tuned).

The A.W.A.K.E. Coordinator's meeting - this one of two meetings we hold concurrently with the Sleep meeting (the other being the Industry Roundtable meeting). The coordinator's meeting is an opportunity for existing coordinator of support groups in our network to meet and discuss the finer points of running a support group for apnea patients - and to get some support themselves. This year we had the good fortunate of having Colleen Bazzani, RPGST from Methodist Hospital in Minneapolis as our speaker. Thanks Colleen!

This is the third meeting I attend as the ED of the ASAA and it was the best ever. I am getting to know the folks involved and getting known by them. The sleep community, particularly the sleep apnea section, is still small enough that you can know just about everyone involved. More importantly than knowing the participants, is knowing the issues and I am getting a handle on them as well.

I will leave you with an image from the exhibit hall... it is from the booth of a large pharma company promoting their new sleep aid. Yep, that is a woman in a night gown laying in a big letter "o". Incredible.

Travel starts again in August... I will be back before then with updates.

Sleep 2006 part three

2006-07-09T09:05:00.000-04:00

There were many presentations that I wanted to attend, but it is difficult to do when there is an exhibit booth to staff.

There are a couple that I managed to get to that I found interesting and will mention here...

There was a presentation on the Institute of Medicine study. Try as we might to focus the national attention on issues of sleep and sleep deprivation - it usually takes the publication of a document like the IOM report on, you guess it, sleep disorders and sleep deprivation to collar the attention of those with the power to do something on a national scale.

The report was published in April '06 and members of the committee have taken it on the road to make people aware it. One of their stops was the Sleep meeting.

The report is a hefty 400+ pages with a lot of background and numerous recommendations. The one section of particular importance the ASAA is on Chapter Six Ensuring Adequate Diagnosis and Treatment: Access, Capacity, and Technology Development, which discusses the need for new validating new and existing alternate diagnostic tools for the diagnosis of sleep apnea. You would think, no argument here, but you would be mistaken. The leadership of the AASM, hosts of the Sleep meeting, have resisted the use of portable monitoring for the diagnosis of sleep apnea - their reason: not enough good science to support it. But in the upcoming issue of their Journal of Clinical Sleep Medicine they publish Portable Monitoring in the Diagnosis of Obstructive Sleep Apnea. Which just happens to the issue where our Open Letter to the Sleep Community concerning the need for greater access to diagnosis for OSA is needed to meet the public health crisis.

Interestingly, members of the panel making the presentation asked for those in the audience interested in helping to advance the recommendations of the report identify themselves. I had left the meeting earlier, fortunately one our board members was present and signed us up!

The second presentation I was able to attend, was one on complex sleep apnea (formerly known as mixed apnea). Complex apnea is the form of sleep apnea that combines obstructive and central apnea.

There is not much written about complex apnea, I suspect that as the field sleep medicine continues to evolve we will hear a lot more about it.

Next - Sleep wrap-up

Sleep 2006 part two - The SHOW

2006-07-01T14:37:00.000-04:00

For an apnea patient I can imagine that entering an exhibit hall filled with CPAP machines and masks could be like a child entering a toy store near Christmas (maybe not).

I can't say that I have become jaded having been to several exhibits of sleep apnea therapeutic devices, but with some of the machines out there the changes are subtle and it takes a user to appreciate them fully.

But then, there are the new kids on the block... folks who come up something so very different, even I have to stop and say Wow. Last year was Aeiomed's battery-powered machine... the Everest. This year, for me the show stoppers were the mobile CPAP - BreathEx and the new mask - Hybrid. I was familiar with the BreathEx - Tom Hoffman having spent some time on the Apnea Support Forum asking questions and getting input from the participants. I had also gotten a preview at an A.W.A.K.E. meeting I had attended in San Diego.

I was unfamiliar with the HyBrid, in fact I would have missed for all other masks there if there hadn't been a comment on the Forum. Certainly it is a clever design... nasal pillows combined with a full face mask. It is one more example to support my comment - there is a mask for every face and person.

Having an exhibit at the Sleep meeting is very important. If you are in the sleep field as someone who distributes anything to others in the sleep field... if you are not there, you have dropped off the planet (period, full stop). I am not sure I can say that about the other meetings we attend as exhibitors, I can without a doubt say that about Sleep.

Working the booth gives you the opportunity to put a face with many of the voices over the telephone during the course of the year. It is also the chance to make new friends and to make them aware of the work of the organization... yes there are still people out there who don't know about the ASAA.

I enjoy speaking with the physicians and the other exhibitors who stop by the booth to say hello and looking for new material... but my favorites are the sleep techs, the women and men who are on the frontlines of patient care in the field of sleep medicine, many of whom run support groups affiliated with the ASAA through the A.W.A.K.E. Network. I was always happy to give them a gold pin with ASAA logo.

Next the sessions.

Sleep 2006 part one

2006-06-26T06:15:00.000-04:00

Unlike the other conferences I attend on behalf of the ASAA, the Sleep meeting has the most content on sleep apnea. I am likely to be overwhelmed by trying to recount every detail of the meeting affecting my topic of interest... witness my earlier post.

The science is important, very important, but for me so are the people. The sleep field is filled with charactors, some of whom I have mentioned in this journal.

I have had the wonderful opportunity to become friends withDr. William C. Dement. He is considered by some to be the father of sleep medicine. I am not certain about that claim, but what I do know for certain is that he has for many years been the most vocal person around about the importance of sleep and sleep research. If he is speaking and there is a way for me to get there I go to listen to him. This time he was providing the keynote address to Sleep Research Society trainee day. Bill was relating experiences from the early days of his sleep research. In his powerpoint presentation he included pictures of himself with a narcoleptic dog (included here). The photographer doing a story about the research Dr. Dement was doing with these special dogs, wanted Bill to hold the dog until it had a bout of cataplesy and went limp. Bill related that holding the dog in sun made it a whole lot longer to happen. Everyone got a good laugh.

The Sleep meeting also afford me the chance to with a group, last year only two, physicians, surgeons actually who also attend the meeting. Dr. Edward Weaver and Dr. Tucker Woodson are Ear, Nose and Throat Surgeons who are very interested in sleep medicine. They offer a very different perspective from what hears the pulmonologists - who make up a large portion of the sleep physician community.

Ed, Tucker and I had pizza and beer on Sunday with a couple of other ENTs and Dave Hargett (the ASAA board chair). To hear them tell it... they have a strong commitment to PAP therapy in OSA patients. If one accepts Dr. Guilleminault's assumption that sleep apnea starts at the tip of the nose, the ENT very definitely has a role to play in the treatment of sleep apnea.

Next the exhibit hall...

Learning what I know... Dental Sleep (Part II)

2006-06-18T09:05:00.000-04:00

The beauty of not being an exhibitor is that you can spend all your time at the educational sessions. This year as in past years, courtesy of the management of the ADSM I have attended the meeting at no charge - thank you management of ADSM!

There was an excellent review of sleep disorders and how oral applicances are a treatment option for some sleep apnea suffers. What followed the overview were three presentations - one on sleep apnea and metabolic syndrome, sleep apnea and cardiovascular disease and sleep apnea and oxidative stress and inflammation.

The case for a relation between sleep apnea and metabolic syndrome has always been clear un my mind. But in the first presentation, Naresh Punjabi, M.D., Ph.D. from Johns Hopkins established rather persuasively that OSA and metabolic syndrome are linked through a condition that develops in people with both conditions - obesity.

The second presentation was offered by Dr. John W. Shepard, Jr. of the Mayo Clinic. He began talking about breathing and the problems caused to the heart by the cessations in breathing that occur during apneas. He presented through numerous diagrams and charts that described the acute cardiovascular responses to asphyxia (which is what happens, for some, countless times during the night. He closed his presentation with the Ode to the Pickwickian (an allusion to the Dicken's novel the Pickwick Papers where a character with a form of sleep apnea was first described).

The third presentation in this series was from Virend Somers... who I had met while in Detroit earlier in the year. His presentation took the discussion to a whole different level... the molecular level. There are three actors in his drama - Adioponectin, C-reactive_protein (CRP)and Leptin. The stage where this drama is played out is in the Endothelium. Without going into a lot of detail... which is more than I can do. CRP had been shown to be a mediator of heart disease and sleep deprivation increases the amount of CRP in the blood stream. More CRP... more heart disease.

The keynote address was delivered by Dr. Remmers and his presentation was an exhordation the sleep dentists assembled to do more to recognize and treat sleep apnea. He used the series of slides showing the increase in obesity in the United States from 1990... it is frightening! As he was speaking I thought to myself... I should comment on the Institute of Medicine (IOM) report about the need changes in diagnostic technology. And as if he was reading my mind he mentioned the IOM report. Nothing like having your sentences finished by someone you admire.

I can see why the sleep dentists made Dr. Remmers and honorary member of the Academy.

Next... onto the main event... Sleep 2006

Dental Sleep Meeting Part I

2006-06-17T19:34:00.000-04:00

The Academy of Dental Sleep Medicine (ADSM) meeting is much smaller than the American Academy of Sleep Medicine (AASM) meeting. It has a much different feel. Dentists who decide to pursue dental sleep medicine are a dedicated lot and very interested in learning about sleep apnea... the condition that they treat through the use of oral applicances.

Recently a number of changes... updates have occurred that has made the practice of dental sleep medicine much more interesting. Late last year the AASM released a revised set of practice parameters for the use of oral appliances in the treatment of certain forms of sleep apnea... mild to moderate (AHI = 5 to 30). So the field got the formal blessing from the sleep doctors. Second and perhaps just as important happened at the beginning of the year without a lot of fanfare. The Centers for Medicare and Medicaid Services approved two reimbursement codes for the use of an oral appliance for the treatment of OSA.

These codes will make it possible, at some point in time in the future (perhaps a year from now), for people getting a device to be reimbursed by their insurer. Up to now, there hasn't been insurance coverage, so other payment arrangements were necessary.

So these are exciting times for the sleep dentists. There are still some impediments to their being able to diagnose *and* treat the patient, but let's let them savory the advance in peace... for now.

If it is a medical meeting, there has to be an exhibit hall. This is not one where the ASAA exhibits, though in the future we will need to strongly consider doing so. It is a small meeting ( a couple of hundred attendees) and so a small exhibit hall. The majority of exhibitors are manufacturers of the applicances themselves. A recent entry to the field is Respironics. They will begin marketing, in July, a "boil and bit" type applicance that comes in three settings: 00 (no adjustment forward) 2.5 (the lower insert is advanced 2.5 mm forward) and .5 (the lower is advanced 5 mm forward). This device is intended as a spare appliance or perhaps something for a CPAP user to use when they are away from the power grid to use their machine.

This could be a signal they are serious about oral applicances as an additional arrow in their quiver in the battle with OSA... very interesting. Another item they had was a single channel apnea screening device similiar to what ResMed has and has had on the market for a year or so.

One more item on the exhibit hall... in addition to the appliances there are sleep apnea screening devices. This is the equipment the dentist use to determine if their patients may sleep apnea before sending them for an overnight sleep study (a polysomnographic examination or PSG for short).

Among those marketing this type of machine was Dr. John Remmers of Calgary in the province of Alberta Canada... who is also an emeritus member of our board of directors. Dr. Remmer's has developed a very sophisticated unattended sleep apnea monitoring device. I had occasion to listen in while he reviewed a couple of test studies with attendees who stopped by. Certainly the technology is currently available to provide the precision needed to diagnose 99% of the sleep apnea cases out there without needing to have a PSG... now if only the "powers that be" could come to some agreement.

Next up... the educational sessions and the return of Dr. Virend Somers.

Sleep 2006 (the medical conference formerly known as APSS)

2006-06-16T07:13:00.000-04:00

I am in Salt Lake City (SLC) for the medical conference , that for 20 years now, brings together all, or at least, most of the medical researcher and clinicians in the field of sleep medicine. APSS stands for Associatied Professional Sleep Societies. It is the umbrella organization for the American Academy of Sleep Medicine (primarily clinical) and the Sleep Research Society (primarily research). And like most medical conferences there are educational sessions and posters (my favorite), but it is also the occasion for other sleep related organizations to get together as well. While they do not meet at the same time, another group, the Academy of Dental Sleep Medicine has its annual meeting a couple days before Sleep.

I am in SLC two days early to attend the educational sessions for the dental group. Starting Sunday I will be reporting on the Sleep meeting and related activities.

On a personal note

2006-06-02T07:57:00.000-04:00

I traveled to New York City yesterday to see my eldest child grduate from college. It was the first time in a number of years when we were all together. There are always complications when five people are all in the same place, but it was worth it.

In four years time, we will gather again to see my son finish and my youngest child start.

Time passes quickly.

Next time... notes from the Sleep meeting (formerly APSS)

Road to ATS - San Diego - Wrap Up

2006-05-27T11:00:00.000-04:00

Another element to the medical conferences that I find fascinating are the poster sessions. These are where researchers will present the initial results of studies they have done in the hopes of getting feedback prior to seeking to submitting their work for publication in a medical journal. It is not often that I can attend the part of the session where one of the researchers or investigator is present to explain their work to whoever will listen.

This year and this conference I was fortunate to have help with the booth (thanks Joanne), to listen in on comments made by one of our board members and a researcher in his own right Dr. David Rapoport.

The posters this year, as they often are at the ATS meeting, were from all over the world - Perth Australia: The Effect of CPAP on Lower Esophageal Sphincter Function; Valencia Spain: Prevalence of Sleep Apnea Syndrome in Patients with Severe Pneumonia; Fukuoka, Japan: Influence of Cigarette Smoking in OSAS Patients; Santa Catarina, Brazil: Clinical Symptoms and Polysomnography Findings of OSAS - to identify only of the few of the dozens presented.

I make an effort to visit the posters at every conference I attend or at least read over the abstract in the abstract book published for the conference. This is usually where the new developments in diagnosis, treatment and co-morbidity are presented.

Occasionally I have the opportunity to attend the meeting of the local A.W.A.K.E. support group in the conference city. I attended the meeting held in Vista, just outside of San Diego, on Tuesday night. I appreicate having the chance to speak with patients in person and to let them know what the association is doing back in DC. At this meeting I had the chance to see the CPAP device to approved by the FDA - a mobile CPAP manufactured by Hoffman Laboratories.

A treat this year for me was to attend the Respiratory Neurobiology and Sleep section dinner, courtesy of the section Chair. The section is made up of ATS members with similar interests. There was an after-dinner presentation by Dr. Sean Drummond of UC San Diego on sleep deprivation/OSA and cognitive ability from a neuro-imaging prespective. This was something a preview for me of a presentation that I am organizing for the Industry Roundtable meeting at the Sleep meeting next month.

The final day of the conference had two symposiums with an added dimension exclusive to ATS - courtesy of the Public Advisory Roundtable of which the ASAA is a founding member - the patient's perspective. In its wisdom the ATS has welcomed a patient who lives with a condition being discussed to share their story with the attendees. The patient at the two sleep apnea related presentations did just that and was warmly received by the physicians.

I close this installment of the journal with an image of me at the Kansas City Barbeque restaurant - a locale used for the filming of Top Gun... they make a decent BBQ sandwich there as well.

The ATS marks, for me, the start of the conference season. The Sleep meeting is next month in Salt Lake City and the ACCP meeting is in October (also in Salt Lake City). Unlike previous years, this year I will be attending the World Congress on Sleep Apnea. It will be held in Montreal in September.

Watch this space for dispatches from my travels.

On the road to ATS - San Diego II

2006-05-22T09:08:00.000-04:00

Exhibiting at medical conferences is something the ASAA has done for a long time. It is one of the best ways to get our patient education material into the hands of the physicians who treat sleep apnea patients. It is also a way to make them aware of the other ways the ASAA is there to help patients who are already diagnosed - through the A.W.A.K.E. Network of support groups.

Of the three sleep-related conferences I attend - this one, the Associated Professional Sleep Societies (now know as Sleep) and the American College of Chest Physicians (ACCP) - I am always most impressed with the presentations at ATS.

While sleep related disorders forms a small part of the overall areas of interest to the physicians who are participate in ATS - these physicians tend to be more involved in research than in clinical care. The presentations at the ACCP meeting, on the other hand, tend to more oriented to clinical care. The Sleep meeting, of course, has both aspects in their program.

May 22nd was the first day of the general session and the exhibit hall. The day starts pretty early here. At 8:15 there was a scientific symposium entitled - Sleep Apnea Pathogensis: The Various Pieces. The first presentation after a tribute Dr. James Skatrud was on the role of the Pre-Boetzinger Complex in sleep disorder breathing. This basic research presented looked at this system in the brain responsible controlling breathing and the possibility that damage to this center could related sleep apnea. Heady stuff - there was an news item last summer that talked about this (http://www.msnbc.msn.com/id/8871356/), but here was a presentation of the next steps in the research being done by Dr. Feldman.

The other part of attending these meetings is the exhibit hall. It is here where I join the dozen and dozens of other, mostly commercial interests (i.e. drug companies, instrument manufacturers and CPAP companies) and hawk our wears.

ATS was the first medical conference I attended as the executive director of ASAA. I had been on the job exactly six weeks. There I was going toe to toe with pulmonologists about sleep apnea... sharing with the wealth of information the association has for their patients. It was fun then and still fun now.

Visitors to our booth fall into two distinct catagories: the curious and the curious-ier.

The curious are those doctors who are getting into sleep medicine and need educational material for their patients. They are pleased find our patient education bulletins that have no commerical brand connected with them. Given that a number of the participants in the conference are from other countries I am always getting the question - is this available in X (pick your language) and usually it is Spanish. I am now pleased to say that it will be, thanks to Dr.Servin and that the Apnea Support Forum will have a Spanish language section as well.

The curious-ier ones are the ones that have sleep apnea themselves and are looking for an insight that perhaps they missed. There are still others who have a bone to pick with someone and we are the ones they choose to pick it with. There was one physician who worked with very young children (less than 2 years old) who have sleep apnea and his comment was that there were no masks available to fit their faces in the US. There some available in Austrialia, but not here. We mentioned that ResMed had recently had a approved a CPAP machine and mask approved by the FDA. I could not tell if he had heard of it or not, only that he had a bone to pick.

Working the exhibit hall is great, in spite of the bonepickers, but it is long hours and can, especially if the conference is not well attended, get boring - waiting for the attendees to come around. During these intervals I get the chance to visit with other exhibitors, which is always educational.

Next - the ATS wrapup.

On the road to ATS - San Diego I

2006-05-21T09:31:00.000-04:00

I am in San Diego for the annual meeting of the American Thoracic Society (ATS). This the third meeting of theirs I have attended (it being the first medical conference I attended after becoming the E.D. for the ASAA). At the right is a picture of street performers playing the didgeridoo. I was tempted to ask them whether they snore - but figured that it would end up costing a lot more than what it cost to take the picture.

The plane ride to San Diego was interested. Many of the people on the plane were on their way here. I could tell because they looked like medical students and they were all carrying the tubes with contains the "poster" for the research they are doing and will be presenting at the conference. In addition, my seat mates were in route to the meeting, but one was coming to present a talk on the future of scholarly publication in light of the changing laws about public access to published research funded with government money (yawn). This is actually important stuff. He is based in Bethesda and is the E.D. for a professional association there. He is someone I'd like to get to know.

The second was a young woman who represents a drug company. She is coming to the meeting to participate in the trade show. She was very talkative on the plane... something that took me and the other fellow a bit aback, but we got into with her. That is until she found out what I do and the conversation changed - as it usually does, especially when there is someone with sleep apnea. Well it turns out that she thinks her dad has sleep apnea - not diagnosed. He snores loudly and has had a number of serious problems with his heart. He is fortunate to still be alive. She reported that her grandfather died of a heart attack at a young age and that he was a snorer. Looking at this attractive slender young woman you would not think she is a candiate for the "fellowship of the mask" but in fact she complains of excessive daytime sleepiness and looking closely at her I noticed that she had something of an overbite - a recessed jaw being a physical condition that can contribute obstructive sleep apnea. I gave her my card and suggested she get a sleep study. She thanked me - another life saved....

The higlight of the day was my dinner meeting with Dr. Alberto Servin Diaz, a pulmonolgist and sleep doctor from Tijuana. Here is a link to his web site http://www.ronquido.net/ronquido2/index.php

We have corresponded for sometime and we took this opportunity to meet and discuss where we might work together. It turns out that one of his patients is very interested in the A.W.A.K.E. support group concept that we sponsor. I let Alberto know that I would happy to furnish the materials necessary for him to establish a group in Tijuana. He indicated that knows of other sleep docs in Mexico and Central America who would be intrested the support group model and working through the ASAA to provide educational resources to their patients. The discussion went as far as to talk about establishing a Mexican version of the ASAA, but we stopped ourselves and said first things first.

Another item discussed was making our resources available in Spanish. Albert indicated a willingness to help there. I suggested that we add a "topic" on the Apnea Support Forum for to ask and answer questions in Spanish. Now we have to get to the implementation.

I was pleased with my first day here - except for the delay in the booth material getting here. No matter, it is was a beautiful and very productive day (we are heading south of the border).

Sleep Apnea Awareness Day (SAAD) 2006 - reflections (Part 2)

2006-05-17T19:54:00.000-04:00

What I write here truly constitute reflections with the amount that has passed since Sleep Apnea Awareness Day. I had prepared something closer to the event, but through technological ineptness lost it... so, discouraged, I left it for awhile.

March 30th was Sleep Apnea Awareness Day and ostensibly it was "during National Sleep Awareness Week" but we weren't collaborating at the same level with the National Sleep Foundation.

The most frustrating element of the lecture this was, find a speaker. That process took far too long and actually jeporadized the entire event. (Note to self: start looking now - for someone to do it in 2007) Yes, I want every much to have a lecture in 2007, though who will be speaking is another question.

When were not able to secure the first speaker we had identified, I used a connection and was able get the former senior policy advisor to the administrator to the Centers for Medicare and Medicaid Services to speak.

I felt we had allowed enough time to get the word out about the event and I made efforts to follow up with the A list invitees. The showing was not as impressive as it might have been. And certainly my marketing of the event to more patients was not as extensive as it might have been.

The lecture was held at the Carnegie Institution, which continues to be the most beautiful place to hold an event like this. The caterering was splendid as it was last year. It would have nice to have a few more - many more people.

Enough good things can not be said for the American College of Chest Physicians - Sleep Institute, our partners in the venture of the lecture. In addition to the much appreciated financial support we receive from them for the expenses of the lecture; their guidance and collaboration on "getting the word out" makes a difference every year. Pictured to the left with is Dr. Charles Atwood who is the Chair of the Sleep Institute. I am grateful for their continuing support and look forward to continuing our association on this important event.

As I think about next year's event - I know the following: choose a speaker early, initial the marketing efforts early and (perhaps most importantly) find a volunteer to take responsiblity for running with it.

Sleep Apnea Awareness Day (SAAD) 2006 - reflections (part one)

2006-04-01T09:26:00.000-05:00

I suspect this happens with many disease-related patient interest organizations... you work hard to accomplish your mission of educating, supporting and advocating all year long, but there comes a moment in the year when attention is focused on your group like a laser beam. The spotlight, if you can manage to grab it, falls on you, your organization and your disease. It is your chance to do something more, something, hopefully, that will carry you to a new plateau in the coming year.

There had been three "National Sleep Apnea Awareness Day" events prior to my becoming the executive director. It was skipped the year I came onboard, the time for it had past by the time I got there and my predecessor was already focusing on her new job and only serving in a caretaking role at the ASAA until her replacement could be found.

Last year, in addition to collaborating with the National Sleep Foundation and having Sleep Apnea Awareness Day be "during National Sleep Awareness Week" (which it had been in prior years, but not designated so - witness the term "National" in the earlier iterations) we did something different - we had a public event - a lecture, which was co-sponsored by the American College of Chest Physicians - Sleep Institute. I had worked on similar events in the past, but this one was the first where I was in charge - heady stuff and plenty of opportunities to make mistakes. The intention of the lecture was to bring together patients, physicians, folks from Congress, Washington association folks and sleep industry representatives to listen and talk together about sleep apnea in the hopes of raising the visibility of the condition to the level it deserves.

SAAD 2005 and the lecture came off well... the targets I had set were ambitious and we did not reach all of them, but, I and others were happy with the results nonethless. The speaker for the lecture was Dr. David Rapoport, who was brilliant and provided a wonderful overiew of the sleep apnea - its pathophysiology, the implications of untreated disease and the treatments available. We also had, as an unexpected guest - Peter Farrell of ResMed Corporation who added his own particular brand of enthusiasm to the proceedings.

One of the unintended results of the lecture was that Apnea Support Forum was born from conversations that followed with Mike Sussman and Linda Druyer who both attended the lecture. There is a lot to say about the forum and at some future date I will, but not today.

Pediatric Sleep Medicine Conference (Part 2)

2006-03-12T16:42:00.000-05:00

The second day of conference began with inspirational words from Barbara Phillips, MD MPH. She is well known in the sleep community for her forthright positions on many issues. While her presentation did not speak directly to issues concerning sleep, she was providing encouragement to the group of pediatric sleep specialists gathered in the room and thinking about the future direction this group should take in their efforts to promote pediatric sleep medicine.

The second session was devoted to a working group on the treatment of sleep disordered breathing - OSA and primary snoring. The leader of the session was Dr. Christian Guilleminault from Stanford University(pictured above). Dr. G has a spot in the pantheon of physicians and researchers in the field of sleep medicine. His background is psychiatry and not pulmonology like many of other specialists in sleep.

This discussion got off to a fast start. Dr. G asked where should the clinical examination of a child suspected of sleep disordered breathing (SDB) begin. Clearly it is in the upper airway, but for him the upper airway begins at the tip of the nose. Before looking at the tonsils, when considering children one must look to see if there are any malformations of the nasal opening. Another area to consider when examming a child suspect of SDB, which for him includes snoring, is the roof of the mouth. How the hard palate is shaped can have an impact on the breathing of the child. And SDB can have an impact on the how the face of the child grows.

The session lasted an hour and 45 minutes and Dr. G challenged some of the ideas of those assembled in the working group. Time flew past and at the end four recommendations were reported out to the rest of the conference. How the group will act on these recommendations remains to be seen, but it was fascinating to listen to him and be offered a different perspective on treatment from the traditional first line treatment for SDB in children - Tonsillectomy and Adenoidectomy (T & A).

Here were the four recommendations - though not all were unanimous:

1. Every child presenting with symptoms of SDB should have a thorough clinical examination by a physician knowledgeable in sleep medicine.

2. Formal polysomnography should be used to quantify/assess severity in every child with symptoms suggestive of SDB.

3. Treatment considerations need both to extend beyond simply T & A and to include considerations as the most effective surgical approach if T & A is employed.

4. Follow up clinical evaluation and polysomnography should occur in every child after surgical intervention.

With that I close out on the Peds Sleep Med meeting... excited about collaborating on a new education bulletin for parents to have children who have sleep disordered breathing and sufficiently convinced that there is more to the treatment of sleep apnea in children than just the surgical option.

Pediatric Sleep Medicine Conference (part 1)

2006-03-11T21:48:00.000-05:00

In the time that I have worked this field, I have spent very little time focused on the issue of sleep apnea in children. Certainly, there are many more adults with OSA than there are children and the majority of the inquiries I get come from older men and women.

Coming to this meeting, I have the opportunity to learn more about pediatric sleep medicine in general and sleep apnea in children in particular. It is also, very easy for me to lose sight of the fact that there are other sleep disorders beyond sleep apnea.

The session I attended this morning addressed the question of ADHD and sleep in children. The presentations were on the basic science (presented by Dr. Michael Decker) and clinical science (Dr. Michel Lecendreux). The most interested thing I learned was the connection between ADHD and PLMD (periodic limb movement disorder). ADHD can be treated by treating the PLMD (in some cases). A possible treatment for PLMD would be to increase the amount of iron in the blood. Imagine... for some, eating liver once a week might be enough to avoid having to take drugs to control behavior.

The conference is also an opportunity to meet physicians who are dedicated to working with children and to let them know about the American Sleep Apnea Association. I did meet a doctor who works at hospital in Washington, DC and explained that I am interested in preparing guide for parents who have children with sleep apnea. She is interested in working with on it. Hopefully, by the time the Sleep meeting in Salt Lake City comes around (in June) we will have something we can distribute to the doctors.

The first day session closed with a discussion of the possible need to establish a separate pediatric sleep medicine organization. One of the presentation was from a representative from the International Pediatric Sleep Association. The Europeans are ahead of the United States in the area pediatric sleep medicine. I had a good discussion with the representative after the meeting and there is interest in working together. Perhaps, they can translate and distribute the educational piece we develop.

Tomorrow, the focus shifts back to OSA and I will have the opportunity to participate in a working group with one of the giants in the field of sleep medicine... Christian Guilleminault.

Detroit... the final report

2006-02-18T20:12:00.000-05:00

The dust is settling from my trip to Detroit and the NFL Player health screening project with the Living Heart Foundation. I made a number of contacts that have potential to move the association in several important directions.

There are several retired players who are involved in minority health initiatives. Looking at the related web sites I don't any reference to sleep apnea. OSA disportionately affects people of color and to the extent that their untreated sleep apnea can be addressed, it may have a beneficial impact on other chronic conditions that are shortening their lives... heart disease, diabetes, obesity, etc.

Then there are the active and retired players themselves. This is a special population of people, who, due to their large size are at a greater risk of sleep apnea than the normal population. The ASAA can certainly do more to educate the players about sleep apnea and guide them along the path to better health.

The national office of the players association is located in Washington DC, it should be easy to develop a relationship with them and become the resource for educational material and support options for the retired and the soon-to-be retired players.

The trip was also an opportunity meet and get to know several significant contributors in the area of research on sleep apnea. These personal relationships will be important as more forward on these various fronts.

The "Super Bowl" project was an investment. A significant investment that will require additional effort on my part if there are dividends to reaped. It will be some time before I can see those dividends and whether in the end it was a worthy investment.

I return to one last image from the trip, the one of me and Lem Barney. Lem, who is a member of the Football Hall of Fame, spoke at the community health screening on Sunday and at the retired player's screening on Thursday. A spry and energetic man, whose enthusiasm and joyfulness was infectious. I am glad to have met him and had opportunity to be uplifted by his positive outlook on life.

This journal is an opportunity for me to report and reflect on my work as the executive director of the American Sleep Apnea Association when I am on the road for the association.

I hope you find it informative and entertaining.

Detroit Day four and five

2006-02-03T20:38:00.000-05:00

The health screening was quite an experience. There were dozens of retired football players passing through screening stations on the second floor of the Center for Athletic Medicine at the Henry Ford Hospital. I was set up near the stations where the unattended portable monitoring equipment was being distributed. For those retired players interested in being screened for sleep apnea, I had a folder of material for them. There were even retired players who were in treatment for sleep apnea and they were interested in the packets of material.

It was like this for two days, Thursday and Friday... there were more players on Thursday.

The press conference on Thursday proved a valuable experience. I met and spoke with the Surgeon General of Michigan (a position unique to Michigan). She expressed a willingness to help get 03/30/06 proclaimed Sleep Apnea Awareness Day in Michigan. I also met and spoke with the director of retired players for the NFLPA. There are possibilities of more outreach to this community.

One of many highlights of these past two days was meeting Virend Somers. He is in the thick of the research on heart disease and sleep apnea. An important player in all this, for sure.

I also had the opportunity to visit the sleep lab at Henry Ford Hospital and sit in on a discussion of evaluating sleep studies for central apneas. I am reminded that medicine is both an art and a science... and proportion of each can vary widely.

It is too soon to draw any conclusions about this venture, but I can say that I made some important contacts and if I will follow through... they will advance the cause of the ASAA into new and important areas.

That's all for now.

Detroit Day Three

2006-02-01T19:20:00.000-05:00

Today, Wednesday is an off day, so I had a chance to catch up on emails and phone calls. I also visited a couple of the A.W.A.K.E. group coordinators here in the area... call it a Good Will Tour.

Yesterday started, early, 5:45 am to be exact, the concern of the folks with the Living Heart Foundation was that they needed to have their equipment for the health screening at the Detroit Lions Academy set up 7:30 am and there might be heavy traffic heading into the city.

Monday evening brought a new member to the group, though he had participated in an NFL screening last year in Atlanta - Gary Burley, a retired football player.

Gary had not been in on the discussions about the departure time on Tuesday morning and when it came to leave he was not up yet. So in the interest of helping out the cause I offered to stay back and wait for Gary to get dressed and ready to go.

By 6:45 Gary was ready to go, though not entirely happy about having to push off at that hour. Fortunately, the traffic was not too bad and the directions I had were clear. We arrived by 7:45, well in advance of the middle school students from the Academy that were participating in the screening... which compromised, height and weight, cholesterol and glucose, blood pressure and sonocardiogram.

Gary and I had a nice chat. His interest in the Living Heart Foundation has to do with his desire to further cardiovascular health education in the African-American community, especially as it concerns athletes. When he learned who I was, he was very interested in talking further about working together to raise awareness about sleep apnea - Amen to that!

Gary was not the only football player to make the scene at the Lions Academy. Also present was Rich Strenger, who had played for the Detroit Lions. There was also an active player - Cory Schlesinger who plays full back. While was not entirely interested in the educational material I had on display, Rich was and in fact picked up an educational bulletin when I described some symptoms that he is experiencing now that the exercise routine has curtailed.

While the children were interested in the gold colored lapel pins I had for people... members of the school staff were particularly interested what I had to offer and were pleased that I left copies of bulletins, newsletters and brochures for them to distribute at a future educational session for parents.

The highlight of the morning at the Academy was the gift of an Automated External Defribulator (AED) from Phillips to the school... an irony was that in same room, a 13 year old had drop dead the year before from sudden cardic arrest.

Once we finished there we headed back to downtown Detroit... there are certainly many sad looking neighborhoods in Detroit. DC looks like the Ritz by comparison... oh well.

There was a several pause between the morning activity and the evening Continuing Medical Education (CME)program. That gave all a chance to regroup and rest a bit.

We drove to Troy for the CME programand I laid out a number of folds with copies of educational material (bulletins, newsletters and brochure). I was pleased with how many of the physicians attending the event picked up a folder.

The evening included more retired football players, though I was not quick enough to get photgraphs to include here.

The presentations that evening included a talk by David Hudgel, MD from the Henry Ford Hospital on sleep apnea and atheletes. It was an interesting presentation... can't say I learned anything. It was well presented and there much interest.

The day concluded after 10:30 pm... it is about an hour from Troy to Ann Arbor. Gary was my car companion the entire day and the way back to the hotel we had another good talk. I think I made a new friend.

Thursday and Friday promise to be very busy and will be my opportunity to speak with retired players about OSA. I'll be back.

02/04/06 - I had hoped to have images for this entry by now (all the more reason to get my own camera). I will post them when they arrive.

02/19/06 - Images from this event are posted under entry Detroit... final report.

Detroit Day Two

2006-01-30T21:49:00.000-05:00

Today's activity was visiting Dr. Safwan Badr, pictured above. Dr. Badr has serves on the ASAA board from 1999 until 2004 and was president in 2000 and 2001.

We have opportunities to talk with each other at different medical conferences over the past two years, but this was the first opportunity to sit and talk without interruption.

Safwan has supported the organization when it was on the brink of extinction. So he could appreciate where the organization is now.

The visit was also an occasion to visit the sleep labs he and other members of his team use for reasearch purposes.

I met Khaled Mansour who explained some of the reseach he is involved in... developing a mathematical model to detect inspiratory flow limitation during sleep. Sounds like a real yawner... but this is cutting edge stuff and could, maybe will lead to new methods for diagnosing and treating sleep apnea.

All-in-all, a great day. Tomorrow is a trip to the Detroit Lions Academy, a middle school in downtown Detroit and then off to Troy Michigan for a continuing medical education event... back on 02/01/06

Detroit Day One (part two)

2006-01-29T18:46:00.000-05:00

It was still raining when we drove into Detroit and many areas of downtown near the Y have been closed for Super Bowl activities, so getting the Y was a challenge.

The facility was brand new - it had new building smell... maybe it was the varnish on the floors of the basketball court when the health fair was held.

Here is a photograh of the Super Bowl XL banner hanging over the stage. So many Super Bowl XL banners everywhere. The city is quite proud to be hosting the event and they (the city fathers and mothers) having been working hard for a year and half getting ready... and it shows.

The basketball court was set up like most health fairs... folding tables around the outside edges of the room. There were hospitals and special interest groups, like diabetes and lead poison prevention and prostate cancer awareness... various groups doing various types of screening.

The Living Heart Foundation was providing blood pressure measurements and measurements of body mass index. Pretty neat stuff! I had available patient education bulletins, copies of the newsletter, the general information brochure and the "now famous" snore score flyer. Here is a picture of our portion of the table... I had the small posters of our logo done just for this event. They are quite nice.

Also located at our table was the nutrionists from the Henry Ford Hospital. Their focus is on cardiovascular health. Their materials were healthy eating and exercise.

I was expecting a larger crowd, but with the weather being less than terrific, my expectations were lowered and I was pleased with the result. A number of people passed by and stopped to pick the snore score flyer and the education bulletin on being evaluated for sleep apnea.

The highlight of the day was, of course, meeting the football players. There are some like the fellow pictured to the left that, if they have sleep apnea, they are an atypical case. This retired player is Lem Barney who has the distinction of being a member of the football Hall of Fame. An interesting gentleman and very committed to helping out folks living in the inner city of Detroit. Then there are fellows like this gent, to the right, who size was remarkable when compared with just about anyone else in the room: Larry Tharpe. I did not have much occasion to speak with him, but then I probably would have gotten a sore neck from all the looking up.

Not being one who is particularly familiar with football and football players, retired or active, it was quite an experience. I will have another opportunity to interact with these players and others, later this week when the Living Heart Foundation conducts it health screening of retired football players. In that venue I hope to have an opportunity to find out what they know about sleep apnea and perhaps more importantly what they don't know.

Tomorrow, I visit Harper Hospital and Safwan Badr... former board member of the ASAA and chief of the sleep section at the hospital.

Here are a couple of other photos of the players... one of Lem Barney seated on the stage and Eric Berkley speaking to the crowd.

Detroit Day one (part one)

2006-01-29T06:33:00.000-05:00

I am respresenting the American Sleep Apnea Association at the Living Heart Foundation Super Bowl XL health screening and education program. The week will be taken up with a series of health screening events and continuing medical education program for local doctors.

Today is the first day and on the agenda is a community health screening that will take place a downtown Detroit YMCA. The expected attendance is 700 to 1000 people. It is raining at this moment so who knows will show up.

My part at the screening will be to distribute our literature on sleep apnea and to answer questions.

My question is - is there someplace in Detroit that provides low cost or no cost sleep studies? Certainly there are free clinics in Detroit... but, what do they know about sleep apnea. Ah, something to do with my free time.

I will back later to let you know how it went.

The challenges of writing

2006-01-22T08:48:00.000-05:00

I amazed at the ease with which so many bloggers can write and write and write. For me getting even a few words on the page is an incredible challenge. This extends to all other type of writing I need to do as well.

There are times when I just don't know how to say what needs to be said. There are also times when I don't know if what I have to say is worth saying.

I sit looking at the blank computer screen and say... well, just start writing, there will always be time to edit what is there (hopefully).

I can do this... I just have to do it.