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