CPAPtalk.com

JQLewis wrote:

BlackSpinner wrote:

In reality OSA is diabetes. It's also heart attacks and strokes and automobile accidents. OSA kills people who have never had a bad night's sleep in their life. That's got the potential to be pretty public, if it's addressed properly.

You are correct and I think that instead of building our own association we should get attached to something like the diabetes organization as a preventative to diabetes. They already publish and run workshops everywhere.

I'm not sure how that would work. To get attached to these organization, you need an organization of your own. Why would you build up an organization, then remain in the shadows, only attaching yourself to other groups? You'd have to interface with organizations for diabetes, heart disease, strokes, and highway safety. Dr. Park's latest article is about the growing evidence of OSA's link to cancer.

These groups have all the power, money and organizational systems and skills needed to put out the information. Imagine all diabetes and heart disease pamphlets mentioning OSA because it might be an underlying cause.

OSA is a condition in and of itself. It's a condition that the medical profession does a terrible job of diagnosing. Doesn't that deserve attention?

Yes and when attached to the huge volumes of literature on heart disease and diabetes it will make more of an impact.

Apathetic, no. United, no. I have self-educated on this issue along with many other medical issues. The healthcare system is broken and does not give patients and doctors adequate time together to really do much good. My GP is swamped with geriatric and Obamacare patients. She works every day from 9 to 7 or 8 oclock at night. The sleep clinic is a cash cow for the hospital. Only the severest cases as well as influential people get to actually see the board certified sleep specialist from Nigeria. The front man for this operation is a retired emergency room physician who is not really trained in sleep medicine so he writes the prescriptions for the Chief based on the polysomnogram results. The DME is a blast. I get what I need because I have educated myself as to my rights as a Medicare patient. I am lucky to have enough background to understand a lot of medical terminology and put a few things together for myself. No I am not apathetic but a survivor of a broken system that Humpty Dumpty and all the king's men can't put back together again.

That being said, in all fairness, I would never have even been seen at the sleep clinic had it not been for my overworked but astute GP who recognized the symptoms of OSA and insisted that I get a sleep study despite my denial and resistance.

I agree a lot of it is broke. But not all. Sure, lots of people still get undiagnosed. But it wasn't so long ago that no one even heard of the term sleep apnea. I also have noticed in the past 9 years (of my using cpap), that more and more of the doctor offices I see check for blood oxygen levels as a matter of routine, alongside weight and blood pressure. I'm sure many still do not do it, but it was a shock to me. Until the last couple of years or so, I NEVER had someone put that thingy on my finger in a regular doctor's office. And I've noticed the questions you're expected to answer when you go to a new doctor includes questions about exhaustion and sleepiness. Again, many still don't do that, I know. .... My point is, it has gotten better in some places; so that shows me that the education of the medical community can help. ..... So next time you go in to your doctor and they don't put that thingy on your finger, ask, "aren't you going to check my blood oxygen level?"

My DME is also a treasure.
When my Airsense 10 Autoset For Her arrived, they called me right away;
and I was able to pick it up that afternoon (two days ago).
I spent a half hour with both RT's playing with my new machine and discussing the features.
They learned at least as much as I. This was the first "For Her" they had--and it was "like Christmas".
While I was looking at (and tweaking) settings in the patient menu, one asked me:
--if there are so many things accessible to the patient, what is their job?
Really? I explained that the pressure (prescription) settings are only settable in the clinician's menu,
but most comfort settings are available to the patient, and most will need guidance.
--my chance to make a difference, however small.

Wulfman... wrote:

49er wrote:

sleepy1235 wrote:I think that there are a few individuals who are concerned and are trying to do something.

I think the American Sleep Apnea Association exists for the benefit of the sleep industry and not the patients.

I think being sleepy makes it hard to organize. Suffers are struggling with their therapy, with their doctors and are running short on rest and are sleepy. They are struggling on their jobs. They are taking naps.

I also sense, that there is beyond all this an acquiescence to sleep problems. Maybe not. I get responses that this can't be done or that can't be done and so not to try.

I think also, that to be effective sleep apnea patients are going to have to have to do a critical analysis of how the whole sleep industry works.

I spent the morning writing up a guide for sleep apnea patients so we can individually apply more pressure on the doctors.

I think one thing a sleep apnea group could do is inform patients so that they are more informed and better able to get what they need from the medical profession.

Another thing would be to have a ratings system of doctors and institutions and sleep centers and have it online.

I would definitely be in favor of the ratings system. That information is badly needed.

49er

Do a Google search on "doctor ratings system". They already exist (and have for some time) in some manner.
I remember searching some of those sites some years ago.
The problem I see is that if YOU are going to "rate" a doctor or give a review, YOU might be setting yourself up for a lawsuit by the doctor if they can find out who submitted the rating. Doesn't matter if it's justified or not, most of us don't have deep enough pockets to fend off a lawsuit by the "medical mafia".


Den

.

Den, I am very familiar with various doctor ratings sites but they are totally inadequate as to evaluate whether someone is a good sleep doctor or not. And many times, the evaluations pertain to their other specialty and not the sleep aspect. My idea would be a more detailed evaluation regarding various issues that go into seeing a sleep doctor so people could make a truly informed decision.

I do agree that legal issues are definitely relevant. Maybe someone could keep the list privately and a system could be set up to provide it to people. I would certainly be willing do that.

Anyway, I am just brainstorming so keep that in mind.

LDuyer wrote:

JQLewis wrote:
As to what advocates should advocate for, I think that's obviously an important question. At the same time though, it's a bit too simple. First of all, you can't advocate for anything without first representing a lot of people. If you represent an organization with 12 members, who's going to listen to you? So you build up an organization in the hopes for eventually having enough clout to influence the behavior of enormous entities like the insurance companies and the medical establishment or corporations like Resmed. What issue should you take on? Frankly, I haven't got a clue. By the time you get an organization built up, what will be the most compelling problem? Should the biggest problem be what you take on first, or should it be something simpler, which gives you the best chance to succeed? I think decisions like that would have to be made after a lot of research and consultation.

All great points, but I still say you need specific statements of what you (whoever) is advocating for. What won't you advocate for? What would you advocate for? What about those who disagree, is there room for them? .... I'm just throwing that out there. (because you're a thought-provoking person)


Silly, seemingly unrelated story........
I was out one day and parked across the street from about a dozen folks facing traffic with placards, for their causes. I was too far away and at the wrong angle to notice right away what they were picketing for. But for some reason, people driving by were beeping their horns in support. On closer look, I saw that the picketers were picketing separate political positions. It was the silliest thing I ever saw. Two were holding anti-abortion signs, two with pro-choice signs, another, I'm not sure what it was for, two others for ending some war. One advocating voting. It was a hodgepodge of causes! It was like a corner for not opposing views, just any old view! So silly. They were all facing the same direction, hoping traffic could see. But I couldn't understand why people were honking, WHICH cause were they honking for? It sounded pretty consistent. What were they honking at? .... I drove around to the intersection on my way home, and I looked. Turns out the person most visible, the one with the sign first and most visible to drivers was, "Honk for peace!" .... So THAT's why they were honking! Drivers simply didn't see the others.

I guess my silly point is that WHAT you stand for is important to know and articulate, especially if you want people to join you. That "what" can be specific or less-specific, but must be clear to people. Even if there is not a consensus on some points. No, it's not simple. Sorry I am harping on this, but I've been thinking about this a lot lately.

Well I posted a link to what I would propose as issues to focus on:

http://osaaction.org

Again, these are very tentative ideas. They need to be developed by a group of people who are committed to trying to effect change. You need to harness the talents of the people in the community affected by the condition.

BlackSpinner wrote:

JQLewis wrote:

BlackSpinner wrote:

In reality OSA is diabetes. It's also heart attacks and strokes and automobile accidents. OSA kills people who have never had a bad night's sleep in their life. That's got the potential to be pretty public, if it's addressed properly.

You are correct and I think that instead of building our own association we should get attached to something like the diabetes organization as a preventative to diabetes. They already publish and run workshops everywhere.

I'm not sure how that would work. To get attached to these organization, you need an organization of your own. Why would you build up an organization, then remain in the shadows, only attaching yourself to other groups? You'd have to interface with organizations for diabetes, heart disease, strokes, and highway safety. Dr. Park's latest article is about the growing evidence of OSA's link to cancer.

These groups have all the power, money and organizational systems and skills needed to put out the information. Imagine all diabetes and heart disease pamphlets mentioning OSA because it might be an underlying cause.

OSA is a condition in and of itself. It's a condition that the medical profession does a terrible job of diagnosing. Doesn't that deserve attention?

Yes and when attached to the huge volumes of literature on heart disease and diabetes it will make more of an impact.

Sure. I agree. People advocating for OSA education/outreach/activism have all kinds of logical partners. Coordinating with other, related organizations should be a primary function of any group dedicated to improving conditions for OSA patients. But it does take an organization specifically dedicated to OSA. If the ASAA were doing these things I wouldn't be suggesting that there's a need for more active representation. I've battled severe psoriasis since I'm eight years old. Believe me, I have my problems with the way this condition is treated, the stigmatization, the shame, the way that dermatologists carry out their professional responsibilities. I have never given a second's thought to forming a patient advocacy group, however. There already is one, and I've never felt there was a need for another. If OSA patients feel themselves adequately represented, then they shouldn't be concerned either.

Interfacing with other organizations is commonplace. One thing which groups do is exchange lists. In order to do this, you have to build up a membership. Then you have something to offer these other groups. There's no way to request other groups take up your cause unless you're first an effective advocate for your own group.

49er wrote:

Wulfman... wrote:

49er wrote:

sleepy1235 wrote:I think that there are a few individuals who are concerned and are trying to do something.

I think the American Sleep Apnea Association exists for the benefit of the sleep industry and not the patients.

I think being sleepy makes it hard to organize. Suffers are struggling with their therapy, with their doctors and are running short on rest and are sleepy. They are struggling on their jobs. They are taking naps.

I also sense, that there is beyond all this an acquiescence to sleep problems. Maybe not. I get responses that this can't be done or that can't be done and so not to try.

I think also, that to be effective sleep apnea patients are going to have to have to do a critical analysis of how the whole sleep industry works.

I spent the morning writing up a guide for sleep apnea patients so we can individually apply more pressure on the doctors.

I think one thing a sleep apnea group could do is inform patients so that they are more informed and better able to get what they need from the medical profession.

Another thing would be to have a ratings system of doctors and institutions and sleep centers and have it online.

I would definitely be in favor of the ratings system. That information is badly needed.

49er

Do a Google search on "doctor ratings system". They already exist (and have for some time) in some manner.
I remember searching some of those sites some years ago.
The problem I see is that if YOU are going to "rate" a doctor or give a review, YOU might be setting yourself up for a lawsuit by the doctor if they can find out who submitted the rating. Doesn't matter if it's justified or not, most of us don't have deep enough pockets to fend off a lawsuit by the "medical mafia".


Den

.

Den, I am very familiar with various doctor ratings sites but they are totally inadequate as to evaluate whether someone is a good sleep doctor or not. And many times, the evaluations pertain to their other specialty and not the sleep aspect. My idea would be a more detailed evaluation regarding various issues that go into seeing a sleep doctor so people could make a truly informed decision.

I do agree that legal issues are definitely relevant. Maybe someone could keep the list privately and a system could be set up to provide it to people. I would certainly be willing do that.

Anyway, I am just brainstorming so keep that in mind.

I made a very tentative stab at setting something like this up.

This is the steering page:
http://osaaction.org/Ratings.php

This is the ratings page itself:
http://osaaction.org/ratingOSA.php

Again, this is not a working site. Just a demo for discussion purposes. The functionality needs to be developed (patient comments need to be added, for one), the questionnaire needs to be developed, the legal ramifications needs to be addressed. The disclaimer is also important. These online rating systems only work well when there's a lot of ratings. People can expropriate such systems for malicious purposes. The more ratings you have, the more likely they are to be credible.

I "fired" the ASAA after a forum admin gave me a snarky, obnoxious reply. They are totally restricted by the manufacturers, DMEs and Doctors and seem to tune out us from the school of hard knocks (experience).

JQLewis,

I am assuming the OSA of your website is for Obstructive Sleep Apnea?
My suggestion is that you don't limit to obstructive. Sure, it's the predominant condition but it might best to stick to SA or something like that.

Also, you might include questionairs on your website (unless they are there and somehow I missed seeing them, sorry). That might help focus the consensus feelings for the purpose of prioritizing points. Not everyone may feel the same way on certain things. And that's not a bad thing. But polling everyone would be useful, to get at what is most important to the majority, so that it can be articulated with numbers behind it.

And yes, advocacy is hampered by the manufacturers, DMEs and Doctors -- particularly in this country -- but what is the alternative? You can't expect them to go away. And they are needed. Yes, they lobby hard for their way, that makes it all the harder in this country to influence them. And while many may feel that non-profit organizations or associations are in the pocket of the commercial entities, it simply isn't that simple. You might look at the issue from a different (not necessarily a valid) view -- manufacturers and DMEs and even doctor organizations should be required to contribute to the costs of advocacy, for the very reason that they do profit from patients. An alternative to that is for advocacy to be funded elsewhere, like from political entities and/or the public. Also, not so easy. I'm only saying, I urge volunteer advocacy to be as open-minded, collaborative, and inclusive as possible, in order to have an effective voice.

Just my 2 cents.

LDuyer wrote:JQLewis,

I am assuming the OSA of your website is for Obstructive Sleep Apnea?
My suggestion is that you don't limit to obstructive. Sure, it's the predominant condition but it might best to stick to SA or something like that.

Also, you might include questionairs on your website (unless they are there and somehow I missed seeing them, sorry). That might help focus the consensus feelings for the purpose of prioritizing points. Not everyone may feel the same way on certain things. And that's not a bad thing. But polling everyone would be useful, to get at what is most important to the majority, so that it can be articulated with numbers behind it.

And yes, advocacy is hampered by the manufacturers, DMEs and Doctors -- particularly in this country -- but what is the alternative? You can't expect them to go away. And they are needed. Yes, they lobby hard for their way, that makes it all the harder in this country to influence them. And while many may feel that non-profit organizations or associations are in the pocket of the commercial entities, it simply isn't that simple. You might look at the issue from a different (not necessarily a valid) view -- manufacturers and DMEs and even doctor organizations should be required to contribute to the costs of advocacy, for the very reason that they do profit from patients. An alternative to that is for advocacy to be funded elsewhere, like from political entities and/or the public. Also, not so easy. I'm only saying, I urge volunteer advocacy to be as open-minded, collaborative, and inclusive as possible, in order to have an effective voice.

Just my 2 cents.

The only way to get institutions to change their ways is to threaten their profits or their power. The Montgomery bus boycott is one example. Other ways to threaten profits are less direct. If you rob an institution of its good name, if you embarrass them, that costs them money and influence. Upton Sinclair wrote "The Jungle" and the meat packing industry was faced with an existential crisis. They had to change or be ruined. That kind of dramatic change is very rare. "Silent Spring", "Unsafe at any Speed", these single, dramatic efforts are notable, but they're the exceptions. Normally change is slow, incremental, and requires the efforts of a lot of people over a long time. It's thankless and anonymous. It takes extraordinary levels of commitment, intelligence and patience. Without these pressures though, the rich and powerful will never change. Why should they? They're doing just fine, thank you.

Gandhi is my model for this kind of activity. He never sought to harm his opponents. I honestly believe that if these institutions stopped acting in such a stupid, short-sighted manner, they'd make more profit. That's fine with me. I have nothing against profit or capitalism. Not all profit is the same, though. Short-term investments and long-term investments are taxed at different rates because there's a recognition that long-term investment better serves the interests of the larger number of people. Short-sighted decisions are always made in the name of protecting the interests of individuals. Corporate CEOs who know they should be thinking about the long-term picture but who have to meet a certain goal in the next quarterly report or Wall Street will abandon them, and they'll be out in the cold. That's what the little guys have to fight against, and it ain't easy. But neither is it impossible. It's been done many times before.

As far as the name goes, sure. That's a detail to be decided by whatever group is willing to make the commitment. No one should be married to any idea unless it bears fruit. In South Africa Gandhi once made a compromise so stupid his followers turned on him and nearly beat him to death. Representing people is not without its risks. There's no school which can teach you how to walk the path of the reformer. You have to figure it out as you go, and it's not an easy path to walk.

JQLewis,

A major hospital system in my area sent me a notice about a health fare they were having in which the risk of heart disease, stroke and aneurysm would be assessed using the latest, greatest technology. In the past, I would have just throw this notice away immediately. But because of your post, I called to make the suggestion that sleep apnea should be screened for.

The 2nd rep took a message to have a supervisor call me back since she didn't unfortunately, have an extension for him. So stay tuned.

By the way, the first rep I spoke with told me her husband had sleep apnea and had endured I believe she said 3 bypass operations. So she loved my idea of having a sleep study screening in which people testing positive could be referred to their doctors for further evaluation. Yes, I realize it isn't foolproof but I couldn't think of another way for them to implement this.

I will keep you posted.

49er

I made a very tentative stab at setting something like this up.

This is the steering page:
http://osaaction.org/Ratings.php

This is the ratings page itself:
http://osaaction.org/ratingOSA.php

Again, this is not a working site. Just a demo for discussion purposes. The functionality needs to be developed (patient comments need to be added, for one), the questionnaire needs to be developed, the legal ramifications needs to be addressed. The disclaimer is also important. These online rating systems only work well when there's a lot of ratings. People can expropriate such systems for malicious purposes. The more ratings you have, the more likely they are to be credible.

Excellent work, thanks.

49er

49er wrote:A major hospital system in my area sent me a notice about a health fare they were having in which the risk of heart disease, stroke and aneurysm would be assessed using the latest, greatest technology. In the past, I would have just throw this notice away immediately. But because of your post, I called to make the suggestion that sleep apnea should be screened for.

Excellent idea. Every fall there is a similar (but I suspect much smaller) health fair promoted at one of the small nursing homes in my area. It's where I get my annual blood workup. It's convenient and they do it for next to nothing and even though my insurance would pay ...they don't miss my veins like the nincompoop in my doctor's office does. Hell, she even missed my huband's veins and a blind person could find those. It's worth it for me to pay a little to get it done there...convenient and they don't poke me a gazillion times.

Anyway, I know one of the people who manage that fair and while they offer a lot of "health" stuff...they don't offer anything that might screen for sleep apnea or help people who are on cpap with problems. They check for BP and do finger stick blood glucose for free...and they do vertigo testing and grip strength testing and a few other little generic health tests but nothing for sleep apnea.
Might be too late to get it included this year but I will try.