Are OSA Patients Apathetic?

[JQLewis]

How about a diabetes union....or a lung disease union....What would you do...go on strike?......ridiculous. It's up to the patient to learn about their disease. If you are not getting the information you need from your doctor or DME...fire them.

There are diabetic associations, my mother was a member at one time.

There are several problem with organzing OSA patients. 1- when they start they are sleep deprived and confused and only have the energy to make it through the day. 2- When it does work people feel tons better, it isn't difficult and they get their life back and they get busy 3- when it doesn't work most give up and walk away, the few that don't end up here and they get back to point 2. Unlike diabetes it is not very public, you just put it on at night and go to sleep.

You're right, of course, there are organizations for lung patients (http://www.lung.org) and diabetes (http://www.diabetes.org/). They are much larger than the ASAA, but I have no idea how effective they are.

As far as organizing OSA patients, you're absolutely right about that as well. There are inherent problems which need to be overcome. One is whom to believe? If you listen to Dr. Colin Sullivan, who invented CPAP, compliance is just great. If you listen to Dr. Steven Park, compliance is even worse than the gloomiest forecasts would make it. The question for me is, how much do the prevailing conditions, principally poor instruction on the use of equipment, poor follow-up to treatment, contribute to CPAP machines winding up in closets instead of on nightstands?

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.

[JQLewis]

It's not that we're necessarily apathetic, but OSA isn't like other big-charity diseases and conditions, doesn't (yet, anyhow) attract big star power (Robin Wms and other possibles notwithstanding)

The suggestion that Robin Williams had OSA is, well, let's say questionable at best. There are others, though. The late Reggie White of NFL fame, Rosie O'Donnell, Shaquille O'Neal and Regis Philbin all definitely have (or had) OSA. If you think in terms of alliances, OSA is said to disproportionately affect the African-American and Hispanic populations. Shaq would make a pretty effective spokesperson for outreach to the African-American community, and Regis has quite an appeal to the AARP crowd. No way you could even approach such people until you had a pretty well established organization. It's an interesting thought, though. Reggie White's family seems to be convinced that OSA contributed to his early death. How amenable might they be to allowing his image to be used to promote awareness of the condition?

Other OSA celebrities include: Roseanne Barr, Jerry Garcia, Randy Jackson, Quincy Jones, Larry the Cable Guy, and Texas Governor Rick Perry.

[LDuyer]

JQLewis,

I enjoyed reading your thoughts.

If you were, say, a SA Advocate, or some other lofty name..... what would you advocate for?
Now that might sound like a stupid naive question on my part; you might think, "isn't it as plain as the cpap mask on your face?" Well, not necessarily, IMHO. And who would you want to advocate to? Who do you want to hear your voice? And what is the meaning behind the voice? Would everyone agree? How do you identify a consensus? Start a list; I'd like to see your list.


...just call me devil's advocate.

[chunkyfrog]

Apnea usually happens at night. People don't talk about it; most don't even know they have it.
They also don't speak about ED, VD, and depression, all while they suffer. Alone. and silent.
I don't believe they are apathetic at all. --just helpless and miserable.
More awareness would help, not only among potential patients, but professionals as well.

[jencat824]

I don't consider myself apathetic, I just have dealt with the 'medical world' much longer & much more than you have.

That's an interesting assumption. I'm not sure what it's based on. I was the primary caretaker for my parents and saw them through multiple cancer treatments, diabetes, heart conditions, etc. The battle I had to wage to get my father treatment for his bladder cancer would fill a book.

I'm not sure I see your point. Not all conditions are the same, and not all conditions are treated the same, by the medical profession or by the general public. As to precisely where OSA fits into the continuum of responsible treatment, I can't say. Can you? Is the 85th worst or the 2nd from the best? The question, it seems to me, is one of advocacy. Given the number of people affected, and the dollar value of both the cost of untreated OSA to the general public and the amount of money spent by already diagnosed patients, do you feel adequately represented?

My point was in part, because you mentioned your experience with the medical field had been fairly routine, basically go to Dr, get problem fixed then go on with your life. Your statement seemed like you had little experience with medical problems. Sorry, I didn't know you had experienced a lot of the medical profession as a caregiver. You then do know that in all medical issues, OSA included, the patient, or in the case of those unable to advocate for themselves, the caregiver must fight to educate themselves. I certainly don't see OSA patients as apathetic, rather the opposite. No, we don't have an organization that you see on magazines & fundraising for OSA research. As has been stated quite well, OSA isn't sexy & hasn't garnered public attention. Just because we don't have a large 'fundraising' machine making OSA a 'popular' cause, doesn't make OSA patients apathetic. I just can't see a day when these type of OSA awareness tools will be mainstream.

Frankly, many of the 'fundraising' organizations raise lots of money for research, but if you look further at the cents on the dollar raised that go to administrative costs, you will find that a lot of money is spent on administrative costs. Most people who give the common small donations don't know that 3/4 of that dollar they just gave to the 'good cause' went to pay an executive salary.

Also, many diseases that could use a little public awareness, such as prostate cancer, get little attention. In case you can't tell by my statement, I used to work in fundraising & my opinion of that profession is pretty low. I didn't work in fundraising long, I was sickened by what I saw. I do my homework too when I give to a 'cause' so that my donation actually helps someone.

I just don't think OSA patients are apathetic. Just because we aren't singing from the rooftops that we need you to participate in a 5K run to raise money for OSA research, I don't think that makes us apathetic. Hell, physicians need more education about OSA before we strive to educate the masses.

I would be willing to participate in efforts to create a grass roots organization, but I've seen this tried for other causes, such as so called 'orphan diseases' & unless you have literally hundreds of volunteers, these types of organizations usually fail. I'm not apathetic, just realistic.

The greatest OSA resource I've seen so far is this forum. The 'official' organization you mentioned didn't impress me. I don't know their administrative percentage of cost per dollar raised, but I could guess I probably wouldn't like it. They do actually help those with OSA who need financial help to get a machine, which I do like to see. They don't run large scale awareness campaigns, probably because these cost lots of money & they just aren't financially equipped for these.

I guess my response was a knee jerk reaction to the title of your post, because I don't think OSA patients are apathetic. I know the good people of this forum aren't.

Jen

[BlackSpinner]

You're right, of course, there are organizations for lung patients (http://www.lung.org) and diabetes (http://www.diabetes.org/). They are much larger than the ASAA, but I have no idea how effective they are.

Regarding diabetes they do fund raising for research and training, run workshops, publish books and these days have big websites. My mother was heavily involved with the local chapter. ( In fact my mother was heavily involved in running many things before her stroke - she was busier after she retired then before)

As far as organizing OSA patients, you're absolutely right about that as well. There are inherent problems which need to be overcome. One is whom to believe? If you listen to Dr. Colin Sullivan, who invented CPAP, compliance is just great. If you listen to Dr. Steven Park, compliance is even worse than the gloomiest forecasts would make it. The question for me is, how much do the prevailing conditions, principally poor instruction on the use of equipment, poor follow-up to treatment, contribute to CPAP machines winding up in closets instead of on nightstands?

Of course compliance is great - everyone who uses one uses it every night. It is the ones who put it in the closet who need help. As long as insurance companies and medicare don't require/pay for the kind of hand holding people need that is what will happen. That is the difference between ASAA and the diabetes association work.

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.

[sleepy1235]

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.

[49er]

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

[Wulfman...]

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

.

[JQLewis]

JQLewis,

I enjoyed reading your thoughts.

If you were, say, a SA Advocate, or some other lofty name..... what would you advocate for?
Now that might sound like a stupid naive question on my part; you might think, "isn't it as plain as the cpap mask on your face?" Well, not necessarily, IMHO. And who would you want to advocate to? Who do you want to hear your voice? And what is the meaning behind the voice? Would everyone agree? How do you identify a consensus? Start a list; I'd like to see your list.


...just call me devil's advocate.

Everyone should be a devil's advocate imo, about every aspect of questions like this. I'm pretty cynical by nature, and a lot of what I've heard seems frankly unbelievable to me. I've searched for naysayers, but all I've found are people who claim the conditions, while bad, aren't quite as bad as some people make them out to. So I've come to accept notions like 20% of the USA being affected by OSA, with 90% undiagnosed. Are these figures exaggerated for effect? I'd say probably yes. But whether the figure is 20 million people or 30 million people, it's pretty shocking.

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.

About as far as my thinking has gone is to figure that the best approach is to serve a useful purpose while you're building the organization, before you're in a position to advocate. That's why I think outreach to the undiagnosed is the best way to proceed. You can serve two useful purposes, to bring people unaware they have OSA into treatment, while at the same time warning them about the pitfalls of getting treatment before they seek it. The third value is that you can serve your own interests in building up your organization. If you can succeed at that, then you can decide what the best use for your clout might be.

At the same time you have to try to identify relevant issues, even if you're not in a position to take them on. I created a demo website to lay out a few possible issues to concentrate on. It's very tentative, and only for discussion purposes, but anyone who'd interested can check it out here:

http://osaaction.org

[JQLewis]

Apnea usually happens at night. People don't talk about it; most don't even know they have it.
They also don't speak about ED, VD, and depression, all while they suffer. Alone. and silent.
I don't believe they are apathetic at all. --just helpless and miserable.
More awareness would help, not only among potential patients, but professionals as well.

People do talk about ED, though it's still in a rather infantile way. Viagra has made it somewhat less hidden. Depression too is slowly coming out of the closet. Hell, when I was a kid there was still a tremendous amount of stigma attached to cancer. That's pretty much gone in more developed countries, but still the case elsewhere. A lot of factors go into making the stigma disappear. Think about AIDS. It took a lot of squeaky wheels to get things turned around.

[JQLewis]

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.

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? I recently saw a post here (ignored by just about everyone) which discussed a study that explored the tendency of doctors to prescribe pharmaceuticals for people with sleep disorders. The study found that 100% of these people who failed to find relief from these treatments had OSA. And what conclusion did the study reach? That patients were to blame because they "steered" doctors away from properly diagnosing them. As if doctors are blameless and patients are responsible for diagnosis. That's the kind of nonsense that needs to be fought. An OSA advocacy group has a lot of natural allies, and I think they should take advantage of that, but they should also advocate directly for the benefit of OSA patients, not just those who may have had their OSA contribute to other conditions.

[JQLewis]

I don't consider myself apathetic, I just have dealt with the 'medical world' much longer & much more than you have.

That's an interesting assumption. I'm not sure what it's based on. I was the primary caretaker for my parents and saw them through multiple cancer treatments, diabetes, heart conditions, etc. The battle I had to wage to get my father treatment for his bladder cancer would fill a book.

I'm not sure I see your point. Not all conditions are the same, and not all conditions are treated the same, by the medical profession or by the general public. As to precisely where OSA fits into the continuum of responsible treatment, I can't say. Can you? Is the 85th worst or the 2nd from the best? The question, it seems to me, is one of advocacy. Given the number of people affected, and the dollar value of both the cost of untreated OSA to the general public and the amount of money spent by already diagnosed patients, do you feel adequately represented?

My point was in part, because you mentioned your experience with the medical field had been fairly routine, basically go to Dr, get problem fixed then go on with your life. Your statement seemed like you had little experience with medical problems. Sorry, I didn't know you had experienced a lot of the medical profession as a caregiver. You then do know that in all medical issues, OSA included, the patient, or in the case of those unable to advocate for themselves, the caregiver must fight to educate themselves. I certainly don't see OSA patients as apathetic, rather the opposite. No, we don't have an organization that you see on magazines & fundraising for OSA research. As has been stated quite well, OSA isn't sexy & hasn't garnered public attention. Just because we don't have a large 'fundraising' machine making OSA a 'popular' cause, doesn't make OSA patients apathetic. I just can't see a day when these type of OSA awareness tools will be mainstream.

Frankly, many of the 'fundraising' organizations raise lots of money for research, but if you look further at the cents on the dollar raised that go to administrative costs, you will find that a lot of money is spent on administrative costs. Most people who give the common small donations don't know that 3/4 of that dollar they just gave to the 'good cause' went to pay an executive salary.

Also, many diseases that could use a little public awareness, such as prostate cancer, get little attention. In case you can't tell by my statement, I used to work in fundraising & my opinion of that profession is pretty low. I didn't work in fundraising long, I was sickened by what I saw. I do my homework too when I give to a 'cause' so that my donation actually helps someone.

I just don't think OSA patients are apathetic. Just because we aren't singing from the rooftops that we need you to participate in a 5K run to raise money for OSA research, I don't think that makes us apathetic. Hell, physicians need more education about OSA before we strive to educate the masses.

I would be willing to participate in efforts to create a grass roots organization, but I've seen this tried for other causes, such as so called 'orphan diseases' & unless you have literally hundreds of volunteers, these types of organizations usually fail. I'm not apathetic, just realistic.

The greatest OSA resource I've seen so far is this forum. The 'official' organization you mentioned didn't impress me. I don't know their administrative percentage of cost per dollar raised, but I could guess I probably wouldn't like it. They do actually help those with OSA who need financial help to get a machine, which I do like to see. They don't run large scale awareness campaigns, probably because these cost lots of money & they just aren't financially equipped for these.

I guess my response was a knee jerk reaction to the title of your post, because I don't think OSA patients are apathetic. I know the good people of this forum aren't.

Jen

I also have experience working with the field of fundraising, and you're right, it ain't pretty. Some are better than others, and some are outright scams. It's unfortunate, but human nature is often not pretty. Think about labor unions. They can often be corrupt and ineffectual, but it's better to have some counter-irritant than none. If there's nothing pushing back against the worst abuses, the powers that be will run amok.

I think this forum is a great resource, but let's look at the scope of the problem. The main problem is how to bring the tens of millions of people getting no treatment into treatment. That's a huge problem, and obviously far beyond the scope of a single forum like this. Can you imagine how many posts Pugsy would have to have to make a dent in that much need?

[JQLewis]

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".

That's why it's so important to have a team of people, including good legal advisers. On the other hand, such actions can sometimes have the opposite effect from that which is intended. Do a search for "The Streisand Effect". Provocateurs have to deal with this kind of challenge. At least, unlike activists like Gandhi or Mandela, you probably won't have to wind up in jail for years.

[LDuyer]

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.