August 31, 2012

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.

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