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.

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.

WCSA2012 - #3 - Gathering the Tribes

It was a challenge to get patient groups to send a representative to the meeting. For a long stretch I thought it might just be me and Adam Amdur.

Then as we were approaching the meeting date, the three groups previously identified—Sleep Apnea Association of Curaçao, the DutchApnea Patient Association, and the Italian Sleep Apnea Association—signed on. The hoped-for roundtable would be possible.

What to discuss? I identified three topics that were important and that would serve to continue the discussion after the meeting. They were topics that would lend themselves to a continuing conversation that could include groups that did not attend the meeting.

·    Drafting a universal apnea patients’ bill of rights                  

·    Organizing World Sleep Awareness Day                  

·    Discussing the World Health Organization’s non-communicable disease (NCD) goal of reducing NCDs (including OSA) 25 percent by 2025             

We began the discussion with each representative providing information about their organization.

Piet-Hejin van Mechelen from the Dutch group gave a vigorous description of the work of his organization. It has 5,000 members and is growing. It plays an active part in the design of guidelines for addressing the condition. The group has developed a star rating system for sleep labs. The ASAA could learn a thing or two from the Dutch.

Lucille Ernandes from Curaçao spoke about the challenges of helping apnea patients on their island. One particular problem is that their social insurance program does not provide for replacement masks or filters. A number of residents live near the oil refineries and the filters on their devices are black within a few days. They have a great working relationship with the only sleep lab on the island. They are involved in educating the patients and providing support where they can.

Enrico Brunello from Italy spoke about how difficult it is to engage patients in Italy. He expressed frustration with the doctors, the insurers, and the patients themselves. He works on a shoestring budget. He is passionate about the subject and is continuing to work to educate patients with his limited resources.

I spoke last and provided a brief overview of the work of the ASAA. I also mentioned how pleased I was that we were to come together as a part of the WCSA and looked forward to further collaboration.

Adam Amdur, a volunteer with the ASAA, led the discussion about the patient bill of rights and how it should be part of a larger call to action by the various groups.

Participants spent time discussing ways to engage stakeholders to move forward on the call.

Two hours passed quickly and we left feeling that new alliances had been formed. The conversation will continue.

WSCA2012 - #2 - Small Beginnings

I have written in the past about the World Congress on Sleep Apnea. I was a newcomer then and knew hardly anyone. But now six years later many of the American attendees and some of the Europeans recognize me. Progress, I guess.

On the conference’s first day, two keynote addresses were delivered simultaneously. I attended Dr. Alan Pack's presentation on OSA and genetics. No new information, but a useful overview of where the research stands today. His most startlingly remark had to do with the likely increased incidence of OSA in China. The prevalence of sleep apnea there, he said, is due in large measure to the recessed chin typical of the Chinese, an anatomical feature that narrows the opening to the upper airway. Now that the high fat western diet is making its way into China, the corresponding increase in people’s weight will add to the prevalence of OSA, Pack said, and increase the number of people suffering.

The highlight of the first day of the meeting was a trip to the Sala della Protomoteca in the Capitolium for an inaugural ceremony. I was one of the invited speakers for the proposal of a world awareness day on obstructive sleep apnea syndrome (OSAS Day). Here is the text of my speech in English. I read it in Italian and translated it...

Mr. Mayor, dignitaries from La Sapienza, the Pontifical Lateran University, Celio Military Hospital, and Umberto I General Hospital.

Thank you very much for this opportunity to speak at this ceremony.

I am honored to share the dais with Drs. Lugaresi, Guilleminault, Kryger, Fabiani, and Bruni,  representing  the American Sleep Apnea Association and representing the millions of adults and children around the world suffering from obstructive sleep apnea.

It is past time to wake up to how serious this condition is not only to those who suffer from it, but to their bed partners, family, their co-workers and the larger community.

Our association will collaborate with other patient organizations to use world awareness day for obstructive sleep apnea as an annual event to encourage people who suspect they have the condition to speak with their doctor and begin the process of recovering their ability to get a good night’s sleep, something that is so important to a healthy life.

Again, thank you very much for this great honor. 

May 25 was designated World OSAS Day. That date was chosen because of its significance in the history of the sleep apnea research. On that day in 1972 the first international research meeting for sleep apnea, a gathering organized by Prof. Elio Lugaresi and Prof. Paul Sadoul, convened in Rimini, Italy.

Thus went Day 1. Then it was on to the patients' group roundtable.

WCSA2012 - #1 – Getting here.

I wish there was a better way to cross six time zones. Six hours, 25 percent of the day and equal to the six hours of sound sleep I get on a good night – that’s a lot that’s lost in a transatlantic flight.

 That said, we made it to Rome, site of the Tenth World Congress on Sleep Apnea. WCSA is one of several international sleep meetings occurring on various schedules to bring researchers in the field of sleep together to report on their work.

 The last time I attended this event was 2006 when it was held in Montreal. I missed the meeting in Seoul in 2009.

 Unlike the nine earlier sessions of the WCSA, this year’s conference has the distinction of including patients as a part of the event.

 The work of having this happen began three years ago when I learned that the 2012 meeting would be held in Rome.

 I wrote to the organizer to ask if an international gathering of sleep apnea patient groups could take place during the conference. It took a while to hear back, but the WCSA planners accepted our request.

 I had the green light and now my challenge was to connect with my counterparts in different countries to get them to attend.  It took some doing, but by the end I succeeded in recruiting representatives from the Netherlands, Curaçao and Italy.

 The roundtable discussion was scheduled, the agenda put together, and so I flew into the Eternal City. We had arrived in more ways than one.

To sleep, perchance to dream, to breath

"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.