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.

Sleeping on the job? Where is Sleep Apnea ED?

Well, I did call it a "sometime" journal of the executive director.

The association (and me) are engaged in so many wonderful projects I barely have time for all of them, let alone reporting on them here.

While I can, let me share what's up and offer a half-hearted promise to be back with more news and commentary soon.

At the June meeting of the Associated Professional Sleep Societies (aka Sleep Meeting) the association received a grant of $10,000 from the American Sleep Medicine Foundation in support of the CPAP Assistance Program (CAP).

CAP accomplishes two important goals. First it is a recycling program. It keeps "gently" used or reusable Positive Airway Pressure devices out of the landfill. Second it provides those devices to individuals who don't have the wherewithal either due lack of insurance or personal resources to secure a device.

People seeking devices must be under the care of a physician and have a valid prescription for a machine.

More information about the program is available at www.donatedcpap.org. We are looking for additional grants to support an expansion of the program. Individual donations are welcome!

A second exciting undertaking will occur at the 10th World Congress on Sleep Apnea happening August 27 to September 1st in Rome, Italy. Readers of this blog know that I reported on the Congress last year. My dream was to convene a roundtable meeting of sleep apnea patient organizations from around the world to discuss matters of common interest.

Dr. Elio Lugaresi

Sometimes dreams come true! Not only is the roundtable happening, here is the attendee list and agenda, I will deliver some remarks at the opening ceremony on the steps of the Capitol in Rome. I will share the dais with Drs. Christian Guilleminault (who I have written about here), Elio Lugaresi (a neurologist and an early researcher in sleep disorder breathing) and Myer Kryger (a co-authored with Drs. Dement and Roth of the key textbook on sleep medicine - Principles and Practices of Sleep Medicine).


The third (when do I sleep?), is our conference in October - The Economic and Clinical Impact of Sleep Apnea - A Solutions Conference for Employers and Health Plans. Following on two previous conferences that addressed sleep apnea in trucking (2010) and in transportation in general(2011), we next effort is to provide employers and health plans an opportunity to hear presentations from companies that offer demonstrated solutions to addressing sleep apnea. We will also share recent studies that demonstrate diagnosis and treatment of sleep apnea reduces healthcare utilization and thereby downstream costs. We are extending invitations to representatives from Medicare, Medicaid and the health insurance exchanges in the hopes of helping them better understand what solutions are currently available.

On top of all this wonderfulness I continue to monitor healthcare matters on Capitol Hill, Federal Agencies (HHS & DOT) and the Courts to advocate on behalf of people with sleep apnea.

Back with updates from Rome!