Defending APAP choice to your doc

[CorgiGirl]

This seems to be such a big issue in the online and offline apnea communities -- my husband, who has been on APAP for 5 years, had a doc try to talk him into going to CPAP this afternoon!

Being a librarian, I tried what I know best. I went searching for professional medical articles which support allowing patients to choose APAP or CPAP. And I found one!

http://www.pubmedcentral.nih.gov/articl ... id=1794625

PubMed is the federal government's National Institutes of Health professional information service. This is a fairly recent professional medical article from Sleep Breath (2007 March; 11(1): 31–37) which says

"Our findings are consistent with other studies of autoadjusting CPAP therapy. A metaanalysis of nine randomized controlled trials demonstrated that APAP is as effective as standard CPAP in treating sleep apnea (in terms of reducing apnea hypopnea index) [12]. Although this metaanalysis did not demonstrate a significant improvement in compliance with APAP, other studies have suggested that APAP may be preferred by patients, especially if their baseline CPAP pressures are elevated [20]."

Just in case any of us ever needs to defend APAP choice to an MD again....

[Wulfman]

APAPs can always be set to single pressure - CPAP mode.

Most APAPs, at least those from Respironics, ResMed and Puritan Bennett have available software to monitor therapy.

There is ONE insurance code for both CPAPs and APAPs. E0601 NU is CPAP purchase.

It's always better to have more options then fewer.

In the final analysis, it's OUR therapy and we should be able to choose the machine we want to use.
(Specialized Bi-level machines are a slightly different issue, as those need to be prescribed and titrated to the patient.)


Den

[Slinky]

I've NEVER felt I had to defend or justify my insistence on an APAP instead of a CPAP!

I made it clear at my titration I would NOT accept anything less than a fully data capable CPAP. When a compliance data only Respironics Plus was delivered late Friday afternoon I returned it early Monday morning.

I was actually told by the DME supplier that I COULDN'T return it w/o a doctor's order! Yeah, well, I did - and THEN drove straight to the sleep lab and told them right up front, fully data capable or no CPAP at all. I walked out w/a specific script for the Resmed S8 Elite. Of course, at that time I didn't understand about autos and just knew I WOULD have access to MY data and I WAS going to buy the software and cable reader.

And I wasn't as lucky for quite a long time in talking my sleep doctor into a script for an auto. But then I didn't know that they were the same HCPCS code as the Elite either at the time I got my Elite and by the time I did I was too far into my insurance's capped rental.

But when I was switched to a bi-level I also didn't get any guff or grief about insisting on one or two specific, either or, auto bi-levels and I got what I wanted.

I just do NOT believe that we should or should have to justify or defend our choice of an autoPAP. WE are the ones paying for it, whether via insurance or out of pocket. CPAP or autoPAP, its the same insurance code. WE are the ones who have to live w/it for at least 5 years. End of story.

[CorgiGirl]

I agree that we need to be assertive to get what we want. But I have found that presenting a doctor with professional literature supporting my choice brings about a big change in their attitude toward that choice and their willingness to do what I want them to.

[mymontreal]

Hi CorgiGirl

An interesting article - thanks for posting!

[Slinky]

CorgiGirl, I don't disagree w/you - but - its still boils down to its our therapy, we are paying for it, it is the SAME HCPCS code, we have to live w/it for at least 5 years, it is the type of device we want and it is totally capable of providing the EXACT therapy the doctor has said we needed and has scripted. And we should NOT have to defend or justify our choice!

IF your doctor asks WHY you want an auto, simply ask why NOT an auto?. When my sleep doctor finally asked me that question was when I was finally smart enough to answer his with my own question, why NOT? and is when I finally got the script for the auto. WE are paying THEM, therefore it is up to them to explain their reasoning for why not an auto.

[marshaeb]

I've been thinking about this discussion for a few days...

CorgiGirl, I agree that professional literature often convinces doctors -- if they’re so inclined, that is -- unless, barring a publication that leads to an industry-wide standard, they reject it because it doesn’t say what they want to hear (strongly resembling humans everywhere ).

I read and appreciated the article you cited. But for something to give to a sleep doc, I think there are better ones out there. Why?

1. It had a very narrow purpose (to evaluate only the Respironics REMStar Auto with C-Flex); it was only a 15-person, two-night study; and it was funded by Respironics. I don't think it would be seen as an objective study.

2. This was in the conclusion of the 2004 study that they cited:

...APAP and standard CPAP were similar in adherence and their ability to eliminate respiratory events and to improve subjective sleepiness. Given that APAP is more costly than standard CPAP, APAP should not be considered first-line chronic therapy...

That's all most docs would see, and it would be used as proof for nixing Rx’ing APAP. In fact, this was one of my doc's arguments, almost verbatim.

3. The authors went out of their way to say the study was limited in a number of ways and that “our results merely suggest a reasonable hypothesis for future study.”

BUT when I hopped over to that 2004 article, I also saw and skipped on to their list of related articles and started reading. (This is effortless for me, btw. I have ADD, which differs from ADHD only in that the hyperactivity is limited to being inside my head. My brain delights in zinging all over the place, much like a superball thrown in an empty barrel. “Oh, THAT looks good! Let’s go over THERE!!”) Anyway, I only looked at the first few of the almost 400 articles, but I did think this one might be more convincing:

http://www.ncbi.nlm.nih.gov/pubmed/1094 ... rom=pubmed

Entitled “A long-term randomized, cross-over comparison of auto-titrating and standard nasal continuous airway pressure,” this was a 60-patient, 24-week study (12 CPAP weeks and 12 APAP weeks). Their conclusions said: “This study showed that: 1) CPAP and APAP produced an equivalent improvement in daytime sleepiness, 2) APAP pressure was lower than CPAP pressure, 3) patients wore the APAP device longer during nights they used the pressure support system, and 4) patients who began the study with APAP were more prone to continue treatment. We conclude that APAP was better tolerated and used a greater number of hours than CPAP, but the extent of improvement in excessive daytime sleepiness was similar between the two modes of therapy.”

********************************************
Slinky and Den, my head and my heart agree with what you've said here (and in so many other posts). But there are times when idealism (what SHOULD be) clashes with reality (what IS). And believe me, I’m a Crusader Rabbit right down to my toenails. At least in this lifetime, though, “right” isn’t always going to win, and when that happens, it isn’t always because someone “settled,” didn't have enough information, didn’t advocate well enough or failed in some other way.

IF your doctor asks WHY you want an auto, simply ask why NOT an auto?

Did that when I saw my doc last week (shining proof that you need to keep saying what you've been saying -- my appointment was before this thread started, and I asked all of the questions/made all of the points that both of you mentioned here -- feel like I just aced a test -- ha!!). He said there’s nothing in my sleep or titration study numbers to warrant it, and he won’t authorize a more expensive machine without a good reason. That was right before he said to call the sleep lab to schedule another titration study for next month. (I do understand the bottom line is simply a question of who's going to get the money.)

APAPs can always be set to single pressure - CPAP mode.

Not according to my doc, who said it must be set to one or the other, that it can only be done by the DME and that I wouldn’t be able to change any of those settings at home.
(Yeah, I know he’s wrong. By that time, it was clear we were not having a discussion, so I didn’t bother to say I’d already stored the instructions for whenever I get an APAP. )

Most APAPs, at least those from Respironics, ResMed and Puritan Bennett have available software to monitor therapy.

Said that, too, and was all but told I wasn't smart enough to understand the data. I just sat there, smiled at him and wondered where I’d go for lunch.

There is ONE insurance code for both CPAPs and APAPs. E0601 NU is CPAP purchase.

I know. Just to be sure it was true for MY insurance company, I checked, and they verified it. But the company also requires brand, make and model number, and it won’t approve APAP unless (1) APAP is specifically on the Rx; or (2) CPAP fails. My doc won't write an APAP Rx unless CPAP fails. Can you say "dead-end road"?

It's always better to have more options then fewer.

In the final analysis, it's OUR therapy and we should be able to choose the machine we want to use.

Yeah, but what's a girl supposed to do? Sure, I could find another doc or go “out of network” for an APAP, but only if I can foot the whole bill. Not an option right now.

All I’m saying is this: depending on a person’s situation, insurance, etc., he/she may not be able to get what’s ideal -- right now. That’s certainly my situation, and I refuse to beat myself up or feel like a failure because I was unable to get an APAP. I hit a wall that’s too tall to scale, and it has a foot-thick door with an unpickable lock.

For now.

I did what I could, and it is enough.

For now.

I’ll keep looking for a better springboard or better lockpicks and eventually get past that wall. Until then, though, I’m still getting therapy. And as jnk said last week (I loved it, jnk -- thanks!!), the most important thing is to breathe and to sleep. The rest will come. I think you need to keep saying everything you've been saying, and frequently; but I also think this needs to be said right along with it.


Marsha

[Slinky]

Hey, no way should someone beat their self up because they couldn't get thru to some thick-headed, educated idiot. I actually had one pulmonologist, when I referred to a PubMed article, ask me what PubMed was! And when I told him NIH's website of access to peer-reviewed, medical journal abstracts, he said I should stay away from PubMed as I wouldn't understand the literature. I, as politely as I could, told him I found that positively insulting.

What I am saying is have confidence in yourself, be diplomatic (which I am not always capable of), but be firm. Don't let the doctors put you on the defensive. Make them explain to your their reasons. I always figure as long as you get a fully data capable CPAP you are ahead of the game. Now THAT I would NOT back down on. I would switch doctors or talk to my family doctor about writing the script for a fully data capable CPAP and why.

My family doctor and my gastro accept copies of abstracts or med journal articles I provide to them gracefully. I've had a few doctors who were insulted by my doing so and/or reacted as that pulmo I referred to above. I've had two great family doctors die on me and so have had to do more than my share of doctor-shopping. Having been spoiled by those two doctors I refuse to settle for any less now.

[CorgiGirl]

I've been thinking about this discussion for a few days...

1. It had a very narrow purpose (to evaluate only the Respironics REMStar Auto with C-Flex); it was only a 15-person, two-night study; and it was funded by Respironics. I don't think it would be seen as an objective study.

Marsha, I agree with the part about the actual study in the article. The section I quoted was about their meta-analysis of nine other studies, which does carry weight with docs, in my experience. Very early in my career, I worked at a medical library and docs asked for meta-analysis often. They said that's where they see the real trends.

In addition, most studies (more than 50%) in this country are funded by the industry or company being studied these days. I guess some data is better than none. I wish there was more public money available for health studies. Until the government ponies up, someone else will be paying....

[rested gal]

Yeah, but what's a girl supposed to do? Sure, I could find another doc or go “out of network” for an APAP, but only if I can foot the whole bill. Not an option right now.

All I’m saying is this: depending on a person’s situation, insurance, etc., he/she may not be able to get what’s ideal -- right now. That’s certainly my situation, and I refuse to beat myself up or feel like a failure because I was unable to get an APAP. I hit a wall that’s too tall to scale, and it has a foot-thick door with an unpickable lock.

For now.

I did what I could, and it is enough.

For now.

I’ll keep looking for a better springboard or better lockpicks and eventually get past that wall. Until then, though, I’m still getting therapy. And as jnk said last week (I loved it, jnk -- thanks!!), the most important thing is to breathe and to sleep. The rest will come. I think you need to keep saying everything you've been saying, and frequently; but I also think this needs to be said right along with it.


Marsha

Excellent post, Marsha. All that's being said in this thread, including your description about what you ran up against, needs to be said.

Thanks, CorgiGirl, for starting this topic and for the link you posted.

And thank you, Marsha, for the links to additional studies. I've got a feeling you'll find a way around that wall. You have an agile mind.

My edit: a "keyword" link that I did not write nor want in my message has been automatically added to my post. grrrrrr

[marshaeb]

Hey, no way should someone beat their self up because they couldn't get thru to some thick-headed, educated idiot. I actually had one pulmonologist, when I referred to a PubMed article, ask me what PubMed was! And when I told him NIH's website of access to peer-reviewed, medical journal abstracts, he said I should stay away from PubMed as I wouldn't understand the literature. I, as politely as I could, told him I found that positively insulting.

What I am saying is have confidence in yourself, be diplomatic (which I am not always capable of), but be firm. Don't let the doctors put you on the defensive. Make them explain to your their reasons. I always figure as long as you get a fully data capable CPAP you are ahead of the game. Now THAT I would NOT back down on. I would switch doctors or talk to my family doctor about writing the script for a fully data capable CPAP and why. ....

And we are in complete agreement about that, Slinky. Thanks for the clarification.

Marsha, I agree with the part about the actual study in the article. The section I quoted was about their meta-analysis of nine other studies, which does carry weight with docs, in my experience. Very early in my career, I worked at a medical library and docs asked for meta-analysis often. They said that's where they see the real trends.

In addition, most studies (more than 50%) in this country are funded by the industry or company being studied these days. I guess some data is better than none. I wish there was more public money available for health studies. Until the government ponies up, someone else will be paying....

All of that makes good sense to me. Thanks, CorgiGirl.

Excellent post, Marsha. All that's being said in this thread, including your description about what you ran up against, needs to be said.

Thanks, CorgiGirl, for starting this topic and for the link you posted.

And thank you, Marsha, for the links to additional studies. I've got a feeling you'll find a way around that wall. You have an agile mind.

My edit: a "keyword" link that I did not write nor want in my message has been automatically added to my post. grrrrrr

Thank you, Rested Gal. High praise, indeed, and very much appreciated. You're right, we need it all -- the details, the passionate advocacy and the acceptance of the outcome (followed, if necessary, by more details, more passionate...). Me? An agile mind? I suppose, as long as that doesn't include "quick thinker." The best and only fair way to have a debate with me is to throw a thought my way, then let me walk around and chew on it a bit before even attempting an answer. But if you'll let me do that, I'll win more often than not. It's like the way one of our directors described my relentless advocacy on behalf of my staff at the time: "I swear, you are like a dog with a bone. No, make that a Chinese water torture!!" Ha. I doubt he meant it that way, but I sure took it as a compliment. Not to be confused with being a nag (SNOREDOG!!), I just keep going back to the well until I can get the water. And yeah, I WILL get past that wall. I've been thinking maybe a tunnel, over there at the corner behind the bushes. I could work at night . . .


Marsha

[oceanofair]

I used to have a Puritan when I lived in France and it had the return tube inside the main tube and a therapist would visit me every 3 months and upload the data and send it to my doctor. He could tell if my mask was leaking and if I was having apnea episodes.. Then I came to the states and got a local doctor and he put me on a Resmed "escape" and said it was the same but obviously it isn't. Is this the difference you guys are talking about? I just realised that the only data they were getting from the machine was my compliance.

I have gone up and down in weight over short periods of time and I am always trying to lower my cholesterol, so I am used to the doctor approving or not approving of my results and "threatening" different therapies if I don't either loose weight or lower the cholesterol.. I seem to do only one at a time.. but recently I discovered after 3 visits to the sleep doctor, that they had no idea how the machine was doing to control my apnea. In fact when I asked how they knew if it was working they told me flat out that if I gained weight (they know I gained weight!!) or had severe symptoms (?) I would "have to" go for a new sleep study.. knowing that I don't want this.. so they shut me up for a while..

now I am reading your posts and I think I am being shafted.. I just registered on cpapatalk and I think it is great!!

[Wulfman]

I used to have a Puritan when I lived in France and it had the return tube inside the main tube and a therapist would visit me every 3 months and upload the data and send it to my doctor. He could tell if my mask was leaking and if I was having apnea episodes.. Then I came to the states and got a local doctor and he put me on a Resmed "escape" and said it was the same but obviously it isn't. Is this the difference you guys are talking about? I just realised that the only data they were getting from the machine was my compliance.

I have gone up and down in weight over short periods of time and I am always trying to lower my cholesterol, so I am used to the doctor approving or not approving of my results and "threatening" different therapies if I don't either loose weight or lower the cholesterol.. I seem to do only one at a time.. but recently I discovered after 3 visits to the sleep doctor, that they had no idea how the machine was doing to control my apnea. In fact when I asked how they knew if it was working they told me flat out that if I gained weight (they know I gained weight!!) or had severe symptoms (?) I would "have to" go for a new sleep study.. knowing that I don't want this.. so they shut me up for a while..

now I am reading your posts and I think I am being shafted.. I just registered on cpapatalk and I think it is great!!

Welcome to the forum!
As you've probably determined, the majority of us are very pro-active in our own therapy.
A data-capable machine with software will save lots of $$$ in doctor visits and repeat sleep studies.

Den

[hose head]

In November when my therapy wasn't working and I wasn't "compliant" my doctor order a new mask. About the same time I started reading this board. I started wearing new mask, and felt worse. My doctor when listening to my list of why I needed an auto, said, "Well, it's that or another sleep study. The machine will save the insurance company money." And she wrote Rx for Auto. I found out that my old machine had already been paid for and when I wanted to return it they said to keep it as a backup machine.

[kopoloff]

Before I make my comment, may I preface it by saying that I live in a country with a different medical/insurance system. In our system, there is no insurance benefit for XPAP, so it is all self funded. However, we still need a referral for a sleep study and titration (which is covered) and a script for a machine.

That means that although the mechanics of the process are a little different, I think the principles are exactly the same. And the principles are the following.

The medical practitioners are paid by us to serve us.
They are duty bound to provide us with the best service they can.
They must treat us with respect and dignity.
We are the final arbiters of the quality and efficacy of the service.

My approach goes like this.
If I don't like what they offer, I go elsewhere.
If they are rude, or patronising or will not answer reasonable questions I leave immediately, without taking the bill
If they object, I offer to refer it to the Australian Medical Association.

I now have excellent doctors, with whom I have frank and open discussions, where I get as much explanation and support as I need.

Sometimes you have to be cruel to be kind!

K