What lies ahead? And what to do about it.

SleepingBeauty · Post by **SleepingBeauty** » Thu Jan 18, 2007 2:34 pm

Does anyone out there have ideas on how to get the news media to pay attention to these issues? It's beyond me.

I'd like to know that too. I'm willing to get involved in anyway that I can.

My doctors didn't think I was "an appropriate" candidate because I'm a woman, not overweight, and I don't have a large neck. I had to really fight to get them to give me a sleep test.

After the diagnosis, my neurologist, who was NOT the doctor who finally agreed to submit for a sleep study, admitted she would have never sent me in. She did say it taught her a lesson and that she would change the way she determined her criteria for requesting sleep tests. I appreciate that she was willing to admit this and really hope she broadens her criteria, particularly regarding women. I should also mention here that before the sleep test, while I was complaining about not feeling like I was sleeping well and tired all day, they prescribed sleeping pills to me - on top of the pain killers I already was taking! Knowing what I know now, it could have been really bad!

I would love to start some "root chopping" but I don't know how. I'm not in a high-profile position.

I am talking to family/friends/co workers around me and helping to educate them as I learn things myself from this site, but surely there is more I can do to have an impact.

Suggestions anyone?

drbandage · Post by **drbandage** » Thu Jan 18, 2007 3:15 pm

SleepingBeauty wrote:
Does anyone out there have ideas on how to get the news media to pay attention to these issues? It's beyond me.
I'd like to know that too. I'm willing to get involved in anyway that I can.

I would love to start some "root chopping" but I don't know how. I'm not in a high-profile position.

I am talking to family/friends/co workers around me and helping to educate them as I learn things myself from this site, but surely there is more I can do to have an impact.

Suggestions anyone?

SleepGuy · Post by **SleepGuy** » Thu Jan 18, 2007 3:30 pm

there is so much money to be made in treating this disease also. I can't figure out why Resperonics, Resmed, etc. aren't out there promoting this issue?

It turns out that ResMed did make a $2000 grant to Dr. Alex Sassini, then a medical student at UCSD, several years ago who used the money to fund a statistical analysis of the annual human and economic costs of untreated OSA on US highway accidents.

The report, entitled "Reducing motor-vehicle collisions, costs, and fatalities by treating obstructive sleep apnea syndrome" was published in the journal Sleep in 2004 and concluded:

More than 800,000 drivers were involved in OSAS-related motor-vehicle collisions in the year 2000. These collisions cost 15.9 billion dollars and 1,400 lives in the year 2000. In the United States, treating all drivers suffering from OSAS with CPAP would cost 3.18 billion dollars, save 11.1 billion dollars in collision costs, and save 980 lives annually. CONCLUSION: Annually, a small but significant portion of motor-vehicle collisions, costs, and deaths are related to OSAS. With CPAP treatment, most of these collisions, costs, and deaths can be prevented. Treatment of OSAS benefits both the patient and the public.

So look what a little $2000 educational grant produced. This study received some media attention at the time and there are still some articles about it on the Net. Seems like ResMed got its money's worth on that one. Perhaps the CPAP industry should form a trade organization that can front additional grants, PR, news releases, etc. If it's a true non-profit, "donations" from its members would even be tax deductible.

The National Sleep Foundation is probably the most active organization on OSA. Perhaps some of us should figure out how we can get involved there.[/quote]

SleepingBeauty · Post by **SleepingBeauty** » Thu Jan 18, 2007 3:42 pm

More than 800,000 drivers were involved in OSAS-related motor-vehicle collisions in the year 2000. These collisions cost 15.9 billion dollars and 1,400 lives in the year 2000. In the United States, treating all drivers suffering from OSAS with CPAP would cost 3.18 billion dollars, save 11.1 billion dollars in collision costs, and save 980 lives annually. CONCLUSION: Annually, a small but significant portion of motor-vehicle collisions, costs, and deaths are related to OSAS. With CPAP treatment, most of these collisions, costs, and deaths can be prevented. Treatment of OSAS benefits both the patient and the public.

Perhaps include letters to your automobile insurance company with stats like this? They would have a $$ interest in seeing OSA diagnosed and under control.

Sleepless_in_LM · Post by **Sleepless_in_LM** » Thu Jan 18, 2007 3:47 pm

SleepingBeauty wrote: Perhaps include letters to your automobile insurance company with stats like this? They would have a $$ interest in seeing OSA diagnosed and under control.

Until people better understand that treated OSA is a GOOD thing, I for one am not about to inform my insurance of my diagnosis. I trust them less then most trust their DME's around here

SleepGuy · Post by **SleepGuy** » Thu Jan 18, 2007 3:48 pm

[quote="drbandage"]
How about a semi-"form letter" (easily personalized) that could be sent to all of someone's doctors?! Tell them how much your sleep disorder has changed your life and encouraging them to screen all people (not just obese males!!) for this disorder with couple quick screening questions. Tell them that it is underdiagnosed, and that you want to encourage everyone in the medical community to keep this diagnosis very visisble on their medical radar screens!!

Bamalady · Post by **Bamalady** » Thu Jan 18, 2007 4:13 pm

I'll give a short how-to on sending a 'Letter To The Editor' of a newspaper right here in case someone wants to do that.

If you don't have a subscription to a local paper, buy a paper. The letters are usually in the first section of the paper. At the end of the letters, there are instructions on how/where to send a letter. Our paper accepts emailed letters.

Fairly easy; the hard part is writing one. The letters usually have to be succinct. Our paper has a 500 word limit.

Is it also possible to find papers on the net, and send a letter in that way? I don't know?

drbandage · Post by **drbandage** » Fri Jan 19, 2007 12:49 am

[quote="SleepGuy"][quote="drbandage"]
How about a semi-"form letter" (easily personalized) that could be sent to all of someone's doctors?! Tell them how much your sleep disorder has changed your life and encouraging them to screen all people (not just obese males!!) for this disorder with couple quick screening questions. Tell them that it is underdiagnosed, and that you want to encourage everyone in the medical community to keep this diagnosis very visisble on their medical radar screens!!

stoverquill · Post by **stoverquill** » Fri Jan 19, 2007 7:27 am

Bump

Just want to make sure this one stays active

drbandage · Post by **drbandage** » Fri Jan 19, 2007 10:51 am

stoverquill wrote:Bump

Just want to make sure this one stays active

Thanks, Trina! That started my day out with a nice feeling! Much appreciated. My own treatment is still very much just limping along, with ample room for improvement, so the "big picture" stuff has to share my attention. Only got so much bandwidth, you know, and I gotta keep my day job!

Bamalady · Post by **Bamalady** » Fri Jan 19, 2007 9:44 pm

Just checking in.

No one home.

Bumping up.

-SWS · Post by **-SWS** » Sat Jan 20, 2007 8:31 am

Below is a comment from SamCurt that I would like to add to this very important thread, that I hope continues to foster positive change at the grassroots level of "societal awareness" (at the very least):

SamCurt wrote:What I can just say is, if Uncle Sam thinks it's big enough problem, NIH and other grants would prove big enough to acquire all CPAP producers in the world, let alone doing bigger investigations.

The above comment was taken from page eight of the following thread:
viewtopic.php?p=141154#141154

roster · Post by **roster** » Sat Jan 20, 2007 9:23 am

[quote="SleepGuy"].................................

Does anyone out there have ideas on how to get the news media to pay attention to these issues? It's beyond me.

drbandage · Post by **drbandage** » Sat Jan 20, 2007 2:06 pm

[quote="rooster"][quote="SleepGuy"].................................

Does anyone out there have ideas on how to get the news media to pay attention to these issues? It's beyond me.

Mile High Sleeper · Post by **Mile High Sleeper** » Sat Jan 20, 2007 3:29 pm

DreamStalker, it would be great if you would do a ppt presentation on sleep apnea for employers. Maybe we could get johnnygoodman to host it, and dr bandages' presentation, on the web site? - as well as future presentations and drafts of letters to send to doctors etc.

There has been much discussion of the Berlin Questionnaire on this thread. It may be widely used and have statistical validity, but I prefer this quiz because it's a lot more comprehensive, includes many more symptoms, so can better detect SA. It's written by 2 sleep doctors, in the appendix of Sleep Apnea – The Phantom of the Night , a book by T. Scott Johnson MD, William A. Broughton MD, Jerry Halberstadt, a patient. An online version is at
http://www.healthyresources.com/sleep/a ... /quiz.html

There is a comprehensive list of symptoms and warning signs, plus links to more online quizzes, in the light bulb above/our collective wisdom article on Evaluating Your Sleep at cpaptalk-articles/evaluating-sleep-apnea.html You can copy this article and give it to those who may need it. This list was written by what us cpaptalkers have listed as symptoms, not just the standard widely published ones.

There are several groups we are trying to reach. We could organize around reaching them. 1) doctors 2) RTs, sleep techs, nurses, DMEs 3) people with sleep apnea 4) the general public 5) the media

Let's keep this going and make it easier for all of us to take action.

What lies ahead? And what to do about it.

assessment quiz, symptoms, outreach