Are OSA Patients Apathetic?

[JQLewis]

My experiences with medical care have always been fairly routine. Go to the doctor, get treatment, resume normal activities. Until I was diagnosed with OSA. Since then I've been through the looking glass. The more I've found out about OSA, the more concerned I've become. After all, it's likely I'm going to be coping with this condition for the rest of my life.

So I started to look for organized efforts to improve conditions for OSA patients. I found the ASAA, but they don't seem to be addressing the issues of greatest concern to me, and their efforts seem rather minimal considering the scope of the problems and the number of people affected by the sub-standard conditions surrounding getting effective treatment. They're also a Washington based lobby group, rather than a patient's union. There certainly seems to be room for a different approach

I understand there was an abortive effort to put together a CPAP users union, to represent patient's interests, but that was 6+ years ago. Have conditions improved since then? I can't see much evidence of that. Don't OSA patient's deserve better representation? Why isn't there a demand for the collective influence of the many millions of people affected by OSA to be considered? Where's the outrage?

[Wulfman...]

Are OSA Patients Apathetic?

I don't know and I don't care!

(how's that for apathy?)

Well, I've been here for over 9 years trying to help new users. I don't know if that counts or not.

The "OUTRAGE"? That's predominantly directed AT those who put their monetary profits ahead of the patients' therapy. But, what are the users supposed to do? We aren't even considered as the purchasers of the products. The DMEs are.....and that's where the manufacturers come into play......they're the biggest scumbags of all. In my opinion.


Den

.

[jencat824]

I don't consider myself apathetic, I just have dealt with the 'medical world' much longer & much more than you have. I have numerous medical issues & have learned the phrase 'physician heal thyself' should have been 'patient heal thyself'. Granted, because of the DME component, OSA patients have an extra frustration with often times a money grubbing middleman to deal with. However, I cannot call ALL DME's 'money grubbing', many are helpful & caring. Some have even invented better ways to get our equipment & supplies, such as those with good online stores, like our hosts.

Before I found this forum, I WAS on my own, finding tidbits of info on my own, learning as I went along. The very best thing anyone can do for a newly diagnosed OSA patient is to tell them about this forum & suggest they join & read, read, read.

Come to think of it, the 'read & research' component applies to any medical diagnosis any patient receives today. We have the internet, which affords us all the opportunity to educate ourselves about any diagnosis a Dr may 'pronounce' that we have. With this tool, patients today have more educational material available to them than ever before. Although unless someone is lucky enough to find this forum, the OSA patient is still at the mercy of the Dr & DME, neither of whom do a very good job of patient education.

I could expound on this all night, but suffice it to say I DON'T think OSA patient's are apathetic. Far from it, they are farther ahead than patients with some other health issues, because they have HAD to figure a lot of the 'how', & 'why' for themselves. Our hosts have given us all the gift of this forum to let us learn & grow while doing it.

Apathetic??? Nooooooo!

(Off my soapbox now)

Jen

[Julie]

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), and even though we all know it's 'life threatening', it also is associated with older people (not sexy), overweight people (not sexy until you learn better), and snoring (how sexy is that!). So we're kind of out in the cold right now and probably will be for a long time... but at least we have this forum fun house, our little secret.

[LSAT]

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.

[chunkyfrog]

More and more people are using the internet.
I believe better things could be slowly evolving, but we can't afford to give up.

[BlackSpinner]

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.

[palerider]

Are OSA Patients Apathetic?

I don't know and I don't care!

(how's that for apathy?)

I tihnk that's ignorance and apathy

[Wulfman...]

Are OSA Patients Apathetic?

I don't know and I don't care!

(how's that for apathy?)

I tihnk that's ignorance and apathy

And, maybe I don't care that I don't know....... SO THERE!


Den

.

[49er]

JQLewis,

I think you are asking some great questions. Based on my own experiences with pap therapy intolerance of several months and having little cognitive energy, I am guessing that the folks who could use the type of organization that you mention, don't have the energy to create one.

The other reason that seems to hinder progress is that there seems to be difficulties with deciding on a coherent message. I have noticed this regarding mental health reform issues. There seem to be at least 5 groups going in different directions.

Please PM me if you want to talk more about this as I am definitely interested in your thoughts.

My experiences with medical care have always been fairly routine. Go to the doctor, get treatment, resume normal activities. Until I was diagnosed with OSA. Since then I've been through the looking glass. The more I've found out about OSA, the more concerned I've become. After all, it's likely I'm going to be coping with this condition for the rest of my life.

So I started to look for organized efforts to improve conditions for OSA patients. I found the ASAA, but they don't seem to be addressing the issues of greatest concern to me, and their efforts seem rather minimal considering the scope of the problems and the number of people affected by the sub-standard conditions surrounding getting effective treatment. They're also a Washington based lobby group, rather than a patient's union. There certainly seems to be room for a different approach

I understand there was an abortive effort to put together a CPAP users union, to represent patient's interests, but that was 6+ years ago. Have conditions improved since then? I can't see much evidence of that. Don't OSA patient's deserve better representation? Why isn't there a demand for the collective influence of the many millions of people affected by OSA to be considered? Where's the outrage?

[englandsf]

This board is probably the number 1 resource for CPAP users on the planet. Which is a shame but quite typical of "minority interests".

But remember, IMHO no-one would fund the kind of professional support group we really need - stupidly short sighted on the part of the insurers who don't understand the type of very expensive to treat conditions that failed CPAP user will get, without fail.

In the old days a user magazine supported by ads might have cropped up. The internet stopped that option. But maybe an online magazine/newsletter funded by ads?

Who'd join that? If it cost $10 a year? Get a few thousand readers and maybe something could work...

PS I'm an ex publisher who started the first PC mag in Europe in 1978 and was the founder of MacUser and Computer Shopper Europe. We might have the seeds of an idea here.

PPS My prior thoughts of starting a new style DME are now officially defunct.

[cathyf]

...the type of very expensive to treat conditions that failed CPAP user will get, without fail...

Well, except for the ones who fall asleep at the wheel and die in a single-vehicle accident before they have cost the insurance company much...

[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?

[Nick Danger]

I think you'll find that people who post on internet forums (of all types) tend to be more assertive than the average person. You're likely to find that the people who respond are (a) not apathetic and (b) not the average person with OSA. It is possible that the "average" person with OSA hasn't even been diagnosed.

[JQLewis]

This board is probably the number 1 resource for CPAP users on the planet. Which is a shame but quite typical of "minority interests".

But remember, IMHO no-one would fund the kind of professional support group we really need - stupidly short sighted on the part of the insurers who don't understand the type of very expensive to treat conditions that failed CPAP user will get, without fail.

In the old days a user magazine supported by ads might have cropped up. The internet stopped that option. But maybe an online magazine/newsletter funded by ads?

Who'd join that? If it cost $10 a year? Get a few thousand readers and maybe something could work...

PS I'm an ex publisher who started the first PC mag in Europe in 1978 and was the founder of MacUser and Computer Shopper Europe. We might have the seeds of an idea here.

PPS My prior thoughts of starting a new style DME are now officially defunct.

If the number tossed around by the CDC and the NIH are to be believed, 20% of the US is affected by OSA. That's a pretty big minority, and it's just the US. There's a tremendous untapped potential there.

The ASAA lists outreach to the undiagnosed as one of their principal functions. I'm not sure what they have achieved in that regard (I've tried to find out and so far haven't been able to come up with much) but I think there's a lot more work to be done. I have ten years experience in direct mail solicitation and charity consultation. I worked in the IT and production end, and am not an expert, but I picked up enough to know that you can target groups like snorers and other who exhibit indicator symptoms for OSA. An organization can serve several functions this way:

1- Make the organization useful to groups like the CDC and NIH, who are trying to raise the red flag about undiagnosed OSA.
2- Build up a membership base.
3- Warn potential patients about the pitfalls of treatment before they get involved with the medical establishment.

I certainly don't wish to suggest that any of this will be easy. There are natural alliances which I think could help, though. Things are changing, and there is a growing awareness of the scope of the problem. Weary driving regulations affect CDL holders as well as pilots, and OSA contributes to several other conditions which have better organizations advocating for them. You first have to have an organization of your own to inter-phase with these other entities, however.