Back in the pool, sort of

 Since leaving the American Sleep Apnea Association #ASAA, I have kept up my interest in the work of diagnosing and treating sleep-disordered breathing #OSA with a friend and colleague on the other side of the pond @Adrian Zacher. 

His goal was to educate the public in the UK about sleep disorders, specifically #OSA, alerting them to the various treatment options available.

At one point and now I do not remember exactly when Adrian identified a group of health care professionals who have frequent contact with the public who could help with their education about sleep disorders - Community Pharmacists.

After some diligent work on Adrian's part, the British Society of Pharmacy Sleep Services was established. I have the honor of serving on their Board of Directors. For more information on the Society visit the website. 

Here is an infographic that explains why pharmacists should know more about sleep disorders.

The End of Sleep Medicine (Part 4)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Do You Snore?

The potential to snore while sleeping is a fact of life... the area of the throat is constructed the uvula and the epiglottis where are affords two things to happen.

One is speech and the other is the possibility of snoring. In the worse case, where fatty tissue has crowded the opening to the upper airway obstruction during sleep can occur resulting in sleep apnea.

A friend and fellow advocate for healthy sleep has created a website that thoroughly addressed the question of snoring. I commend it to you, a loved one, and anyone you are concerned about who snores.

Snorer.com

Back with another installment of  The End of Sleep Medicine soon!

On a personal note

Cave experiment by Nathaniel Kleitman and Bruce Richardson. Kleitman and Richardson exit a cave after a 33-day experiment to determine whether the human body-clock can be adjusted. Mammoth Cave National Park (Kentucky, USA), Park Museum Collections.

It feels like I have been in a cave for four years and away from the field of sleep medicine. After a false start, I am trying again to be a maven, connector, and writer on sleep.

Perhaps the world is catching to me or I am catching up to the world.  Sleep, healthy, restorative, life-saving, disease-reducing sleep is on everyone's mind now.  

I return to add my voice in earnest and to advance the cause of what we do with one-third of our lives when things are working as they should.

The End of Sleep Medicine - (Part 3)

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

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

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

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

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

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

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

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

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

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

The End of Sleep Medicine (Part 2)

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

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

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

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

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

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

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

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

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

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

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

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

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

The End of Sleep Medicine (Part 1)

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

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

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

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

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

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

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

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

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

The future is rich with possibilities.

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

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

The ASAA first PSA posted to YouTube seven years ago... a classic, Thanks NIH!

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

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

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

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

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

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

Sleep well.

One chapter ends and another begins….

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

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

Successes with shout-outs –

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

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

What’s next?

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

invictus

Year end message to my connections -

Friends,

2013 is just about over and before we close the books on this year and start afresh on January 1st, I want to share a few items I am really about and to ask you to reach deep into your pocket.

I am most proud of our work with the CPAP Assistance Program (www.donatedcpap.org). Since starting the program in 2011 our office and our partner at Prairie Home Medical in Tracy, MN have distributed nearly 1000 PAP devices to people who need therapy but who don't have insurance or can't afford it otherwise. Perhaps the biggest challenge for us has been the difficulty of securing Bi-level devices. At one point the waiting list was so long that we had to stop accepting requests for them. Sadly, two people on the waiting list have died. We are working to find devices and where possible encourage physicians to look at the possibility of using a straight CPAP or APAP in order to get people on therapy faster.

I am also proud our efforts in social media. Our presence on Facebook and Twitter continues to grow at a steady pace. The Facebook fan page is an occasion to share current information about sleep and sleep disordered breathing which people "like" and share with others. Our LinkedIn group for sleep professional is a lively forum for discussion on topics on sleep apnea and has become increasing international in its membership. Sleep professionals everywhere are turning to us for information and connections.

Our flagship web site (www.sleepapnea.org) is undergoing a transformation with improvements in readability and content design. Work there will continue seeking better integration of Internet resources, including the Apnea Support Forum (www.apneasupport.org) which continues to attract over 80,000 unique visitors each month.

There two initiatives that I am pleased to share with you and that will play a big part of the association's activity in 2014 and beyond.

First is the re-launch of the association's quarterly newsletter Wake-Up Call in January. Due to funding limitations we had to suspend the print edition in 2013. Early next year we will provide to subscribers an electronic edition that promises to be more informative than the earlier versions. Follow this link in order to subscribe - http://eepurl.com/HAxCX (you may need to copy and paste this into the address bar).

Second is the news and something you may have seen elsewhere - the Patient-Centered Outcomes Research Institute (PCORI) awarded the ASAA a contract to establish a Patient-Powered Research Network for sleep apnea. The press release announcing the award is here - http://www.prleap.com/pr/215453/ 

This promises to be a game changer for the association in terms of moving the patient's interests to the center and encouraging collaboration between physician and patient.

Thank you for making this far. These are exciting times for the ASAA and I am honored to be the Executive Director at this point in the association's history.

If you are as excited about the work the association is doing as I am, and can spare the cost of two Starbucks Lattes to show your support for the ASAA and for me as its ED click on the link below and send us $10.00 or more if you can spare it. You will get a handwritten note from me thanking you.

SURE ED, I AM GLAD TO HELP SUPPORT THE IMPORTANT WORK OF THE ASAA!

Best wishes to you and yours for a healthy 2014!

Perfect Storm - Delivering the right therapy

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

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

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

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

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

Please allow this interruption while we mark the passing of a great man....

Out of the night that covers me,

Black as the pit from pole to pole,

I thank whatever gods may be

For my unconquerable soul.

In the fell clutch of circumstance

I have not winced nor cried aloud.

Under the bludgeonings of chance

My head is bloody, but unbowed.

Beyond this place of wrath and tears

Looms but the Horror of the shade,

And yet the menace of the years

Finds and shall find me unafraid.

It matters not how strait the gate,

How charged with punishments the scroll,

I am the master of my fate:

I am the captain of my soul

Rest in Peace Nelson Mandela

The Perfect Storm - Arriving at a Diagnosis

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

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

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

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

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

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

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

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

                                                     (to be continued....)

The Future of Sleep Medicine - The Perfect Storm

A "perfect storm" is an expression that describes an event where a rare combination of circumstances will aggravate a situation drastically. The term is also used to describe an actual phenomenon that happens to occur in such a confluence, resulting in an event of unusual magnitude.

That is how I would described what happened with the diagnosis and treatment of sleep apnea and why "righting the ship" to get those who need help will be very difficult.

The first circumstance contributing to the perfect storm is the condition itself. Sleep apnea was original considered to be a rare disease that affected only middle-aged overweight men. It was originally called Pickwickian syndrome after the character from Dicken's novel "The Pickwick Papers" - Fat boy Joe. It was something that a physician might see one or two cases in their entire working career....

In fact, it is a common and highly prevalent condition - that up until the mid 1980s was treated by means of a surgical intervention - a tracheotomy. The advent of Positive Airway Pressure therapy invented Colin E. Sullivan changed everything.

But how to diagnose it and how to dispense the therapy....

(To be continued)

Why sometimes I feel like Jimmy Stewart....

A couple years back I had the good fortune to attend and present at the annual meeting of one of our sister organizations - the Sleep Apnoea Trust. My talk was on OSA in the USA - clever title, I thought anyway. One of the images I used was of Jimmy Stewart from the Hitchcock film Rear Window.
The point I made in the presentation was that I am an observer of the practice of sleep medicine as respects the diagnosis and treatment of sleep apnea.

Lately, I am reminded of the Jimmy Stewart and the film for another more disturbing reason. I feel like Jimmy as I watch powerlessly through the rear window as a crime is being committed against an innocent and unsuspecting victim.

The crime - diagnostic and treatment for sleep apnea is not being provided based on a care management model as opposed to episodes of care. The sleep apnea patient is now even more on their own than they were earlier. While home sleep testing is more efficient and will get many more people into the treatment pipeline - without the intervention of a qualified sleep medicine physician to provide guidance or at a minimum, consult on the appropriate treatment pathway - the patient is more likely to get lost - go without effective treatment.

Who is the Raymond Burr character, the villain, in this thriller? You could say the healthcare system is to blame - with its focus on sick care and payment for procedure versus payment for improved outcomes. But the payors starting with Medicare can also be faulted for not fully understanding the condition they are trying to address with their reimbursement model.


The use of Positive Airway Pressure as a non-surgical intervention for the treatment of obstructive sleep apnea is still relatively new. Dr. Colin E. Sullivan published his landmark paper in the journal The Lancet on April 18, 1981, barely a generation ago. 

At the time, it was not clearly understood what the prevalence of the disease was, nor was there a conscious effort made to understand the best way to dispense the therapy. The default was to use the channel used to dispense the therapy used for other pulmonary disorders - durable medical equipment companies that dispense oxygen therapy. 

Positive Airway Pressure therapy has evolved rapidly in the past 30 years. Evolved beyond the basic understanding of many of the people who prescribe it and many of those who dispense it. It fact, I heard a lecturer say that the technology is outpacing the science when it comes to treatment - scary thought. 

As things stand now, especially with how insurers are viewing diagnosis and treatment - everyone involved in this condition - clinicians, suppliers and patients are suffering. 

Calling for a "do-over" is not possible - but asking for a thoughtful examination of how this disease is diagnosed, treated and managed is - particularly as we here in the United States transition to a more patient-centered (read patient-financed) system of health care delivery. 

It is time for those patients, who have "come out on the other side", to help those who are struggling to examine current practices and the basis of that assessment recommend a care model that is efficient, cost-effective and sustainable going forward.

The CPAP Assistance Program of the American Sleep Apnea Association

The Donation Center

About 18 months ago the association formalized a relationship with a Durable Medical Equipment company located in Southeast Minnesota - Prairie Home Medical - to administer a donated CPAP program. Even though we have not done any real advertising of the program it has become quite popular. The need for donated machines is great, as is the desire not to throw perfectly usable equipment in the landfill.


The association operates on a very small budget, always has, and the addition of this vital program is stretching us to our limits.  We have reached out for grants and are grateful for the help from the American Sleep Medicine Foundation and the ResMed Foundation. We also appreciate the gift in memory of George Laribee.

We are trying something different to raise money to support the expense of the program using the crowd source web site - Indiegogo.

Your support of the program means a lot to those who are in need of a good night's sleep because they have untreated sleep apnea.

Stay tuned for more blog updates.

Ed the ED

WCSA2012 - #6 – Faces of sleep apnea

The last full day of the World Congress on Sleep Apnea began with a presentation by Dr. Josep Maria Montserrat of Barcelona with another vexing issue in sleep medicine – auto-titrating positive airway pressure devices. His presentation outlined the work he has done to understand the technology and how it can benefit the patient, particularly as a means of titrating the proper pressure to use with a PAP device.

One telling comment he made after mentioning that the algorithms for the different APAPs differ from one another and that they change from one generation of the device to the next without the manufacturer’s announcing the change. The technology has gotten ahead of the science, he said. I had heard this comment at another conference a number of years ago – it was troubling then and it remains  troubling now.

The second talk of the day, perhaps my favorite of the congress, was delivered by Dr. Meir Kryger of Yale. His talk was titled “Faces of Sleep Apnea.” Kryger has, by his count, treated 12,000 patients since 1972 when he started in the field of sleep medicine. His presentation consisted of pictures of sleep apnea patients he has treated over the years. Some of the faces were familiar typology for the OSA patients and some were not. Each image had a story and it was clear that he cared about each one. His talk reminded those present that the physical examination and the patient history are critical to getting to a diagnosis.

The congress ended without a clear statement on where the event would next be held. Pressure from the sponsors of these events to consolidate the number of sleep medicine conferences leaves the date of the next World Congress on Sleep Apnea open. Perhaps it is fitting that the last scheduled congress was held in the Eternal City, the place I call my spiritual home.

Arrivederci!

WCSA2012 - #5 - New under the sun

In an earlier post I mentioned that conferences like the World Congress on Sleep Apnea provide an opportunity to present information on work in progress. Today I add that they also serve to bring people up to date on later stages of development.

On Thursday Dr. Alan R. Schwartz, a pulmonologist from Johns Hopkins School of Medicine, provided a review of the current literature on neuromodulation of the upper airway in OSA. Currently there are three companies in various phases of clinical trials using neurostimulation of the tongue to prevent sleep apnea from occurring. The results so far are mixed, with each company reporting different levels of success.  The use of a “pacemaker” to treat sleep apnea likely will be a component of future OSA treatment. How many companies will be engaged remains to be seen.

Pediatric OSA was a significant topic area during the conference. One of most promising treatments for OSA in children is rapid maxillary expansion.  Dr. Paola Pirelli, an orthodontist who pioneered the use of RME, reported on the use of this technique.

The most interesting poster of the day, for me, added to the debate on calculating severity of sleep apnea. Prof. Andreo Larsen from Finland presented “Apnoea Load – A new supplementary index for assessing sleep.” He argued that the current measure of severity, the apnea-hypopnea index or AHI, does not take into consideration time or duration. He believes that a patient with longer apnea events (spending more time in a hypoxic state) has more severe disease than someone with the same number but of shorter duration.  He calculates the apnoea load or AL by taking the average number of apneas per hour times the average duration of apneas in minutes. The AL would be a useful supplement to the AHI to identify borderline cases.

I am confident that the field of sleep apnea research is good hands. My only worry, and it is not small, is who is dictating the direction of the work.

WCSA2012 - #4 - Sleep Apnea and Nothing but Sleep Apnea

The World Congress on Sleep Apnea provides a unique opportunity among the medical/sleep meetings I attend. This gathering exclusively addresses the condition that is my work—sleep apnea. It can be exhausting to spend so much time listening and learning on one subject, but heck . . . in this case, it is Rome.

Several of Wednesday’s presentations were particular provocative.

The first session of the day focused the thorny issue of scoring. At present there are several criteria for evaluating or scoring a sleep study.  How the study is scored can change the key measure of disease, the apnea-hypopnea Index or AHI. The presenter reviewed how two different scoring techniques, “Chicago” and American Academy of Sleep Medicine 7, could affect the estimate of prevalence of sleep-disordered breathing in the general population. Without getting into a lot of detail, suffice it to say that addressing this issue is critical to having consistency in our research.

This type of conference is also a venue for researchers to present preliminary data from their work. These “poster sessions” are occasions for researchers to get feedback positive and negative. Sometimes the work continues after this check-in. Sometimes it ends right there.

Two of these check-ins caught my attention this day – “Time- but not dose-dependent amelioration of obstructive sleep apnea by dronabinol” and “Predictive utility of a risk assessment for nonadherence to CPAP: nap index.”

The first is looking at using dronabinol, a cannabinoid medication (yup, you guessed it), to reduce OSA. Interestingly this component of marijuana affects the vagal nerve, which among things works on the muscles involved in the control of breathing. This research still in its early phases is exploring the possibility of a drug that could help treat sleep apnea, either alone or in conjunction with other treatments.

The second involves the use of a risk assessment tool that helps predict whether a patient prescribed PAP therapy will have difficulty adjusting to the treatment. The value of this tool will be better  identification of people who may need special attention early in treatment.

Another feature of these meetings is “industry-sponsored” presentations. Companies often present data about their products as well as details on what they produce. I was particularly interested in the Philips/Respironics offering titled “CPAP Compliance.” The first talk by Dr. Luigi Ferini Strambi of Milan – “What is the rationale for using CPAP and how much use is enough?”— was certainly a provocative title. Ferini provided a comprehensive review of the current medical literature on the benefits of using PAP therapy on cardiovascular, metabolic, and mental health issues.  As to the question of how much use is enough – the more the better.

This is an exciting time to be involved in the field of sleep medicine, and I am pleased to serve as a conduit conveying information to patients.