Let's clear up some misinformation

[robysue]

LTTS, What do you hope will be the outcome of your visit to cpaptalk?

I hope you will all realize who is actually making a killing here, and it's your insurance companies. You should be pitching a fit to them and demanding that they cover these features that you consider so necessary, instead of making the inaccurate assumption that DMEs are ripping you off. It's a shame none of you were there to stand up for these issues when manufacturer's and DMEs were busy advocating on your behalf. And believe me, they did, for a long time. To no avail.

As I've said before:

Many of us intensely dislike our insurance companies treatment of us. And we do bitch and moan and complain to our insurance companies about the crappy way they cover CPAP equipment. I've written a number of posts about my futile battle with my insurance company to obtain a written list of the replacement schedule. And I've been a victim of "The insurance company has changed the rules yet again" more than once---and I have NOT blamed my DME for this. Indeed I know my DME is as frustrated as I am with their inability to help me wrangle out the correct information on the basic question of "How often am I allowed to get a set of nasal pillows with insurance paying 50%?" And they've done valiant battle with my insurer more than once on this issue. I've had three different answers to this question from my insurance on three consecutive days. And I think my DME's been given three or four different answers during a two month period.

But I'm captive to my insurance because it's provided by my employer as a fringe benefit.

And most of us who are not yet retired have NO WAY to vote with our feet when it comes to insurance. It's a very rare employer who provides multiple health insurance plans from multiple health providers. So we just can't do the most effective thing when dealing with a nasty, company that's providing poor service: Comparison shop for a better deal and LEAVE the company that's treating us so poorly. And since we can't Leave our insurance companies, our insurance companies can safely ignore us. They'll get their premiums from our employer as long as they keep our employer happy. And the way to do that is to keep the premium increases down to a percentage that's a bit less than the percentage increase in college tuition each year---if possible.

As for your claim that DMEs were once busy advocating to the insurance companies on our behalf: That would be much more believable if you would quit referring to machines that record full efficacy data as deluxe machines. A true patient advocate would realize that from the patient's point of view that full efficacy data should be a standard, expected feature of the CPAP machines. A true patient advocate would NOT browbeat patients with insurance company gobbledy-goo in an effort to distract patients from rather typical DME gobbledy-goo.

In all your posts you keep telling us why DMEs can't, won't, and shouldn't consider the medical needs of their patients:

• You've told us repeatedly that a DME can (and should) supply us with only the most basic Bricks even though the full efficacy data machines are billed under the same code---even when a big, bad insurance company does reimburse the DME with enough money to cover the cost of a full efficacy data machine. And curiosity makes me asked: Should exhale relief be considered a "deluxe upgrade"? After all there is the PR System One DS150 (RETAILS for $559) that does not even have C-Flex on it. It's $50 cheaper than the PR System One Plus ... And that generic prescription often does NOT contain the words "Flex" or "EPR" or "exhale relief" on it.
• You've told us repeatedly that a DME has no obligation to sell us replacement parts for masks that they sold us---when the mask is still less than a year old AND the DME continues to stock the mask AND the insurance company is willing to pay for the part. (Just what should we do when a part is worn out and is due to be replaced under our insurance company's current replacement schedule and the DME won't sell us the part?)
• You've repeatedly ignored or excused example after example of DME behavior that can only be described as incompetent while at the same time claiming that the time and effort needed to provide us with even the most basic rock bottom service vastly increases brick and mortar DMEs overhead costs to the point where they simply cannot afford to sell us a Resmed S9 Elite or PR System One Pro for $900---if insurance is involved.
• You've repeatedly ignored or excused example after example of DME incompetence that not only aggravates the customer, but also is down right damaging to the DME's bottom line. When a DME regularly sends out the wrong part to a customer, they're hurting their own bottom line: Useless shipping costs, followed by the paperwork needed to authorize a return, followed by the paperwork to straighten out the inappropriate claim that was sent to the insurance company, along with paperwork for filing the claim for the correct part once it's located and shipped is very costly. If it happens on a regular basis, that's enough to seriously affect the bottom line.
• You've repeatedly ignored the fact that most DMEs could do a whole lot more to maximize the number of customers who actually become full time, long-term CPAPers. Sure this would cost the DME a bit of money upfront. But with a larger percentage of full time, long-term CPAPers in your customer base, the better it will be for your bottom line. After all, someone who's been successful at CPAPing for 2 or 3 years (or more) is not going to need much of the expensive hand-holding and troubleshooting that almost every newbie needs. But if you lose 50% of your new customers each year, you'll never build a huge base of customers that DON'T need the expensive, personalized help, but do continue to bring in a nice, steady steam of revenue through the years.

As I've said before: For the lousy treatment so many of us get, there's plenty of blame to go around:

PCPs who refuse to refer us for a sleep test because we're "too young", "too thin", or female, and so we couldn't possibly have OSA.

Sleep labs that provide settings that are so uncomfortable that it's even more impossible to sleep

Sleep docs that explain nothing and refuse to write anything but a generic prescription

Sleep docs, their PAs, and the RTs that are unwilling to consider any reason other than "you must be mouth breathing" when we don't start feeling better as quickly as they think we should.

Insurance companies that are stingy with the coverage---both terms of total payment to the DME and in terms of our copay.

Insurance companies with their opaque replacement rules for needed equipment.

DMEs that mislead patients---sometimes intentionally and sometimes unintentionally, but mislead them nonetheless. And, yes, this includes the DMEs that tell us ad nauseam that we're not allowed to get a full efficacy data machine.

DMEs that repeatedly get things wrong: Setting the machine up incorrectly---as in setting it to the wrong pressure. Sending out the wrong part or the wrong size of the correct part. Not honoring a manufacturer's mask trade in policy. Tightening a newbie's mask to the point where it hurts---all in an effort to get rid of a nonexistent leak when there's no leak data to analyze because the DME sold the newbie an S9 Escape.

[jnk]

In my opinion ALL national DME providers suck.

Again, you make the points of this forum even better than we do. Thanks again.

I think you are confused about the reaction you are getting because you forget what kind of forum you are posting in. It is a public forum that contains people who are interested in helping patients (who have often been mistreated and lied to by the system) get the best PAP therapy possible. The advice given is informed by the thousands of experiences of people who were at first told they could not have a machine with average capabilities but who were then able to get a machine with average capabilities once they demanded it. And without paying anything extra for it. That is the reality, and there is nothing you can do to change it, whether you personally like it or not. And we will continue to advise patients based on our collective experience by explaining that AHI is not a "deluxe" luxury but a necessity for establishing efficacy of treatment. That is our medical opinion as informed patients involved in our own therapy, not our business position, as you seem to be approaching it.

I understand that you don't like the situation. I understand that you don't think us worthy of getting an average AHI-data machine that treats our condition effectively without our paying out of pocket to get it. I understand that you think we have taken advantage of the poor DMEs by demanding a machine with average capabilities. But the fact is that experience has shown that patients benefit from demanding a decent machine, and this forum will continue to pass that information on to patients--information that DMEs hide from patients for financial reasons, since it isn't their job to be helpful, but, instead, to maximize profits.

We are patients. So we don't negotiate the contracts between insurance and DMEs. We don't write our policies. But when we demand from a DME that we get a useful machine for our life-threatening condition, we are well within our rights. And if DMEs don't like the way we go about it, or how it affects their profits, it is THEIR responsibility to renegotiate, not ours. It is our responsibility to find a DME that will give us what we want when we can do that, or to get our docs to force DMEs to do what they don't want to do when that is medically necessary.

You claim we are ignorant because we don't fully know or understand what goes on between DMEs and insurance, but that is a testimony to your failure to appreciate that such details are not our concern. Our concerns have to do with our medical condition and our ability to treat it, since the responsibility for that falls squarely on our own shoulders, through no fault of our own. So although our advice to fellow patients that they demand a machine that gives them AHI data, just like we did and were successful with, may not make sense to you, that is simply because you have been blinded by your experience at the other end of the equation. You laughably equate efficacy data with camo fabric for a chair. You had the opportunity to learn from the patients here, but instead you came in here appearing by your tone to call everyone idiots who were giving out information that you call misinformation because you don't understand it, or don't want to, or do but don't like it. Whichever.

Why don't you stick around here enough to learn about how the treatment of OSA actually goes, out here where the rubber meets the pavement? Learn how AHI data saves lives. Saving a life is NOT a luxury. Calling a life-saving feature "deluxe" may make sense in the back rooms of businessmen, but it doesn't to the people whose lives have been saved by it. Ineffective treatment of OSA is a cold-blooded KILLER. The ONLY way to assess efficacy of treatment is to make sure the therapy pressure is not escaping out the patient's mouth and that pressure is sufficient to stop apneas. That requires AHI and leak data that you and your kin may call "deluxe" but that we call "necessary for life." You would not appreciate it if I came into your bedroom every night and tried to suffocate you, and we do not appreciate it when businessmen try to take away our only tool for making sure that isn't happening to us every night.

Our tone is combative because we do not consider you a professional when it comes to the main subject matter of this forum--effective treatment of OSA and related conditions. We don't care what color the forms are or how they are submitted or what the profit margin is of any business. What we care about is helping patients stay alive by getting machines that can help them do that. Anyone who comes here and claims that our purpose is less than noble in that attempt is insulting us and doing the forum and new patients who come here a disservice.

In conclusion (since you haven't bothered to listen to anything anyone has said here so far, that I can see), just remember that it is the job of insurance to keep costs down. It is the DME's job to make money. But it is the patient's job to work the system any way he can to get what will save his life, regardless of the consequences to the profitability of the businesses involved in giving him what he needs to be able to do that. He should not settle for a less-than-average dumb machine that cannot give efficacy data, because his life is worth more than that, whether you or the insurance people understand that or not.

Learn or don't learn. It is up to you.

Peace.

Out.

[Madalot]

Jeff,

This is why I have so much respect for you. Your last post was eloquent & kind, and expressed what so many of us feel. If LTTS chooses to ignore it, it's by choice.

The logic of it is there -- and I thank you for taking the time to write it.

And I am one poster that is in agreement 100% --

[Starlette]

ditto to Madalot.

@ ltts - I don't have time to read this whole thread. For the times that I've taken a peek, the tone has not been in your favor.
I will say one thing...

Consider yourself a very blessed person ltts to not have been graced with such a debilitating disorder as OSA.
I'm sure you've perused here enough to know what I mean by "debilitating".
If I could wave a magic wand, I'd have you walk our walk for a year to experience what you've only read about.
Bet in a hurry you'd be changing your tune (and tone for that matter).

I am so thankful for this forum for the knowledge and encouragement they've given me. We're a band of men and women striving to have a life.
This forum IS my extended family. Had it not been for this forum, I'd still be stuck with the REMStar M Series ("undeluxe" as you put it) @ 8cm for the last four years (four years in a couple of months). I shudder to think what would have become of me had I still been using it.

I believe so strongly in this forum that I've recently included cpaptalk.com in my will. This forum has been included in "Important People" to contact in the event that I pass.

If anything you've done is strengthen our solidarity as to why we expect better service and better equipment and proven yourself to be insensitive and so out of touch with the concerns whom you've been paid to serve.

[jnk]

Thanks, K.

I generally find that reading what I write is a lot more tedious than writing it.

[Slartybartfast]

. . . because that's what trolls do.

Naw... I don't think she is a troll. I do think she likes to stir up trouble and I am wondering why, and what she expects to get out of it.

If it looks like a duck,
Quacks like a duck,
Then it's a duck.

Call it anything you want, Call it a banana,even. Itts a troll.

[nanwilson]

DITTO.....what Slarty said.

[LoneStar]

Ltts,

Do you have OSA or SDB? Do you use a CPAP/BiPAP machine? If not, then you have no leg to stand on here.

Lisa

[Madalot]

Ltts,

Do you have OSA or SDB? Do you use a CPAP/BiPAP machine? If not, then you have no leg to stand on here.

Lisa

Valid point and question. As much as I frequently complain about my first DME, it's only fair to give them this kudo:

The reason they got into doing cpap machines is the owner was diagnosed with OSA. He learned about it and decided that his company could branch into that. He knew the validity of having full data (therapy related data as I call it as opposed to just compliance data). He stocked and provided ONLY what LTTS calls the "deluxe" machines and did not provide any bricks to his customers. Had he gotten a better RT to handle that side of his business, he probably would have made it.

Unless a person has dealt with OSA, SDB or heaven forbid disease related issues like a few of us -- making the type of blanket statements LTTS has made -- well, back to Jeff's well written post. It says it all....

[chunkyfrog]

I like that term, "therapy related data".
"Efficacy data" is good, but the idea of therapy vs compliance data is simple and to the point.
WE know the difference: Now to teach the world. . .

[DoriC]

I like that term, "therapy related data".
"Efficacy data" is good, but the idea of therapy vs compliance data is simple and to the point.
WE know the difference: Now to teach the world. . .

As Judge Judy says, "you need to put on your listening ears ". I wonder if the OP heard anything we've been saying?? As I've said so many times before, where would any of us be without this amazing forum? I know where I'd be...a widow!

[jnk]

I respect those who choose to ignore posts they find inflammatory.

But in my opinion, there are also times when the posts from someone who may appear to be trolling may provide a fine opportunity to restate information that new ones may find helpful, even if the original poster does not benefit. In that sense, at least, trollish statments can be turned into something useful by the nature of our responses, I think.

In this case, although the opinions presented by the OP were very different from those held by the majority in this forum and thus appeared to be meant mostly to cause disturbance, I believe the opinions are honestly held and represent what many, many people believe, so they are worth addressing. Some people who deal with PAP equipment truly believe that AHI and leak data are unneeded luxuries. Insurance does not require that machines dispensed give it. A number of doctors don't see the importance of it. And I believe that the majority of those using PAP do not want to know the data or care about it. That allows the argument to be honestly made that it shouldn't automatically be included, no matter how much I (we?) disagree with the position.

I say, listen closely to what the OP has said. It represents what many believe and what we may be hearing more of in the months and years to come, as money gets even tighter. It is tedious to patiently refute views that we find ridiculous from our perspective, but it can pay off if we gather the facts, stick to our guns, and take the time to reasonably argue against what perhaps the majority outside this forum believe.

[RandyJ]

Robysue and others, including me, have written extremely detailed posts in this thread... in my opinion LTTS's argument boils down to this:

"Insurance will only pay for a basic cpap" (the crux of LTTS's argument)


Therefore, if insurance pays $800-900 to DME for basic cpap;

and

Basic cpap costs DME $350-450

then:

DME nets $450 roughly on the sale of one basic cpap machine....


THAT is what LTTS is saying... that DME has to net 125% on one sale! Or it is not worth it to them to deal with you. If they can only net 30-40% on the sale, as in the case of supplying an apap, they are losing money!

And of course they ARE!! If you determine as part of your business model that you have to make 125% or more profit on every sale, then anything less is UNACCEPTABLE to them.

Talking about features and data is all extraneous to the DME argument; it is about the CASH.

[idamtnboy]

LTTS, there is one really easy way for the DMEs to get what they consider just compensation for providing a "deluxe" machine rather than a basic one. Drop out of the preferred provider network. Simple as that. They then are not bound by the rules of insurance companies nor the regs of Medicare that prohibit upcharging for the "deluxe" equipment. If they want the benefits of being a preferred provider, then quit grouching and live by the rules.

Another thing. When was the last time a hotel or restaurant asked you to pay a 2% upcharge when you paid your bill with an American Express card? Never of course. The contract they sign to be in the Amex system, or any card system, prohibits them from charging a fee for a customer to use a card. If the retailer doesn't like the fact that it cost them 2% more to process an Amex charge than a Visa one, they simply don't accept the Amex card. I've run into that many times. With every set of contractual relationships comes benefits and restrictions. If you don't like the restrictions, then don't enter the contract.

When we know a DME is reimbursed for an E0601 machine whether we are provided an Escape or an Autoset, we are going to ask for the Autoset. If the DME doesn't want to provide the Autoset for the agreed upon reimbursement, then it's within his right to tell us to go somewhere else. It is not his right to castigate us for wanting the better machine.

[ems]

[quote="jnk"
Again, you make the points of this forum even better than we do. Thanks again.

I think you are confused about the reaction you are getting because you forget what kind of forum you are posting in. It is a public forum that contains people who are interested in helping patients (who have often been mistreated and lied to by the system) get the best PAP therapy possible. The advice given is informed by the thousands of experiences of people who were at first told they could not have a machine with average capabilities but who were then able to get a machine with average capabilities once they demanded it. And without paying anything extra for it. That is the reality, and there is nothing you can do to change it, whether you personally like it or not. And we will continue to advise patients based on our collective experience by explaining that AHI is not a "deluxe" luxury but a necessity for establishing efficacy of treatment. That is our medical opinion as informed patients involved in our own therapy, not our business position, as you seem to be approaching it.

I understand that you don't like the situation. I understand that you don't think us worthy of getting an average AHI-data machine that treats our condition effectively without our paying out of pocket to get it. I understand that you think we have taken advantage of the poor DMEs by demanding a machine with average capabilities. But the fact is that experience has shown that patients benefit from demanding a decent machine, and this forum will continue to pass that information on to patients--information that DMEs hide from patients for financial reasons, since it isn't their job to be helpful, but, instead, to maximize profits.

We are patients. So we don't negotiate the contracts between insurance and DMEs. We don't write our policies. But when we demand from a DME that we get a useful machine for our life-threatening condition, we are well within our rights. And if DMEs don't like the way we go about it, or how it affects their profits, it is THEIR responsibility to renegotiate, not ours. It is our responsibility to find a DME that will give us what we want when we can do that, or to get our docs to force DMEs to do what they don't want to do when that is medically necessary.

You claim we are ignorant because we don't fully know or understand what goes on between DMEs and insurance, but that is a testimony to your failure to appreciate that such details are not our concern. Our concerns have to do with our medical condition and our ability to treat it, since the responsibility for that falls squarely on our own shoulders, through no fault of our own. So although our advice to fellow patients that they demand a machine that gives them AHI data, just like we did and were successful with, may not make sense to you, that is simply because you have been blinded by your experience at the other end of the equation. You laughably equate efficacy data with camo fabric for a chair. You had the opportunity to learn from the patients here, but instead you came in here appearing by your tone to call everyone idiots who were giving out information that you call misinformation because you don't understand it, or don't want to, or do but don't like it. Whichever.

Why don't you stick around here enough to learn about how the treatment of OSA actually goes, out here where the rubber meets the pavement? Learn how AHI data saves lives. Saving a life is NOT a luxury. Calling a life-saving feature "deluxe" may make sense in the back rooms of businessmen, but it doesn't to the people whose lives have been saved by it. Ineffective treatment of OSA is a cold-blooded KILLER. The ONLY way to assess efficacy of treatment is to make sure the therapy pressure is not escaping out the patient's mouth and that pressure is sufficient to stop apneas. That requires AHI and leak data that you and your kin may call "deluxe" but that we call "necessary for life." You would not appreciate it if I came into your bedroom every night and tried to suffocate you, and we do not appreciate it when businessmen try to take away our only tool for making sure that isn't happening to us every night.

Our tone is combative because we do not consider you a professional when it comes to the main subject matter of this forum--effective treatment of OSA and related conditions. We don't care what color the forms are or how they are submitted or what the profit margin is of any business. What we care about is helping patients stay alive by getting machines that can help them do that. Anyone who comes here and claims that our purpose is less than noble in that attempt is insulting us and doing the forum and new patients who come here a disservice.

In conclusion (since you haven't bothered to listen to anything anyone has said here so far, that I can see), just remember that it is the job of insurance to keep costs down. It is the DME's job to make money. But it is the patient's job to work the system any way he can to get what will save his life, regardless of the consequences to the profitability of the businesses involved in giving him what he needs to be able to do that. He should not settle for a less-than-average dumb machine that cannot give efficacy data, because his life is worth more than that, whether you or the insurance people understand that or not.

Learn or don't learn. It is up to you.

Peace.

Out.[/quote]



What more is there to say that hasn't been said over and over again? I vote for ending this thread on the above note.