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Getting the Runaround: Dan's Story

Entry: to give someone the run·around
Pronunciation: \ˈrə-nə-raund\
: to act in a way which makes it difficult for someone to do something, for example by refusing to tell them things they need to know.

My friend Dan knows he has obstructive sleep apnea and is trying to use CPAP properly to treat his condition before it treats him to (i) at worst, an untimely death, or (ii) at best, a diminished quality of life. Amazingly, that puts Dan in about the 95th percentile of all people who have Sleep Apnea --- Dan is a superstar of Sleep Apnea simply because he knows he has it, and is continuing to seek treatment. What's more, Dan has friends and family who share the disorder and check up and encourage him on his progress; he has a highly skilled doctor in New York City, where he lives, well trained in Sleep medicine; he has one of the best CPAP machines on the market, the ResMed S8II; and he has a DME that monitors his compliance with the most cutting edge technology there is -- the ResMed ResTraxx monitor, which beams his compliance data to his DME on a daily basis so the DME can alert Dan to any problems, and make adjustments to his therapy. With all these things going for him, Dan is sure to get the care he deserves, right? Wrong.

Dan has been feeling very tired lately, so he left a voice mail for his DME last week to ask whether what they were seeing with his data was normal. No response. Dan is a persistent guy, though, so he called back this week and left another message, this time leaving his fax number and a request for a fax copy of his compliance data so that he could try to interpret it himself. Days go by . . . yesterday, though, he received the fax copy of his report with a cover page note: "looks like you are doing well." Confused because he feels so crappy, Dan poured through the report to see how he could possibly be doing well. At first glance, the report did look good -- the summary page didn't flag any sessions as particularly alarming. It was only when he went to the detail page did he realize that things were as bad as he had thought --- AHIs in the teens and the 20s, the mask coming on and off throughout the night.

How could it be that he got the "all clear" from the DME with such terrible results? Turns out, the DME sets up its monitoring of the data so that as long as the machine is being used for 4 hours or more a night, no red flags are raised. Well, Dan was using the machine more than 4 hours most nights. Problem was that during those 4 hours, he was slowly choking to death. This is the reason he went on CPAP in the first place!

Even though Dan is slowly suffocating himself with the DME's blessing, the DME is rewarded by Dan's insurance company, which, before it cuts a check to the DME, checks only that Dan is still using the machine. I suspect that's why in this case, Dan has gotten the runaround.

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Comment by Steve T on July 29, 2009 at 6:04pm
The DME is paid by insurance, or privately, for the purchase or rental of cpap's or any other DME equipment/supplies. They are not paid to actively manage the efficacy of the equipment other than to ensure proper instructions in care and use is given. Although, some physician offices would beg to differ, somehow of the misguided notion that DME providers get paid to anything other than (minimal) payments for rental or purchase of the materials only. There is NO reimbursement for monitoring, for followups, for hand-holding or helping those who need some extra help whether that help is provided in the home or just many hours on the phone. ...Sometimes a LOT of extra help in the beginning!

The four-hour 'mark' is from two things: First, it's a bit of a threshold for the medical community in regard to "using it enough to be effective for the average patient to receive intended benefit from the use of the device". Secondly, Medicare, as of November '08 requires the DME provide proof the patient is using the device for "greater than or equal to four hours per night for 70% of the nights in any 30 day window compliance is viewed from 31 to 91 days after set up", or no reimbursement at all. It's to YOUR benefit that YOU follow the guidelines. So, Mr and Mrs Medicare Recipient, if YOU want to write the checks for YOUR rented medical device then tell your DME to not monitor your use. BTW, when YOU rent an item from your local rental service, let's say a garden tiller, does the business renting the thing to you visit you and ensure it's work'n for you? No. How has the DME RENTAL company been loaded with such responsibility?

I've had many patients "choke and gasp" with cpap/bipap/asv/etc and have, without additional reimbursement at all, helped them by changing from one mask type to another, chin strap, pressure titrations, etc. Sometimes we've actually been thanked for that unpaid help.

Good professional help can be hard to find, yet is easily found. What do I mean? It means you need to be realistic as to what a person or entity can do to help you with your cpap experience. The pressure is prescribed by the physician. The mask seals to your face/nares (depending on mask style). The machine provides pressure. It WORKS as long as your mouth is shut. IT WORKS and performs the intended task. Liking it, putting up with it, learning to appreciate it... That's up to YOU.
Comment by Judy on May 20, 2009 at 1:24pm
dsm, whether the local DME supplier adopted the use of ResTraxx on their own volition or whether they adopted its use and bill insurance isn't as moot as you might assume.

The local DME supplier's explanation of their need for such high reimbursement rates is that they provide the education, advice and support necessary for successful CPAP compliance. HOW can they provide that education, advice and support IF they totally ignore the data that tells them the possible reasons for their clients' difficulties w/CPAP compliance?? Or don't receive that data because the CPAP hey provided isn't capable of providing it?
Comment by Judy on May 20, 2009 at 1:05pm
LisaMuth, when you say the same machine I take it you might mean the Resmed S8 Elite II w/EPR??? If so, try pressing the Left and Right buttons and hold them for 4-5 seconds. Efficacy Data should pop up in to the LCD screen. From then on it is simply a matter of Left button to Enter, Right button to Exit, Up button to return to the previous screen, Down button to proceed to the next screen.

If Efficacy Data doesn't appear in the LCD screen then your DME supplier didn't turn access of the advanced patient menu on. This menu allows you access to a goodly share of your nightly data and data averages over specific time periods as you've been using it long enugh W/O being able to accidentally or intentionally change your therapy settings. These xPAPs have an internal, 24 hour, noon to noon clock so you do have to access your previous night's data before noon or it is rolled over into the total averages.
Comment by Judy on February 6, 2009 at 11:16am
I "fault" Resmed only in that they don't do as Respironics recently did and provide a patient version of their professional software - the only difference between the two being the ability in the professional version to make therapy setting changes via the software.

Heck, most of us who are determined and innovative have been able to figure out how to change our settings via the xPAP itself so who cares if it can or can't be done via the software as well?

I reiterate OUR BEEF IS WITH THE AMERICAN MEDICAL PROFESSION!
Comment by Judy on February 6, 2009 at 11:12am
Mike, I certainly didn't mean to leave the impression you were being critical of the manufacturers and/or explicitly Resmed. Resmed has and is doing its best to get their nightly data to the patient. It is the US FDA at the behest of the American medical profession that prevents us from access to the software. Our beef should be w/the AMA and other governing US medical associations. How many of us know who provides accredidation to these "sleep doctors". THAT is the best place to start filing our complaints!!! And the FDA as well. THEY are the "culprits".
Comment by sleepycarol on December 31, 2008 at 1:38pm
We all must become more proactive in our treatment.

Manufacturers have set much of the software available so that only a doctor or dme has access to that data. A lay person is kept in the dark. I feel it is a reasonable expectation for the DME to periodically check your data for any problems that might arise -- after all they are charging premium price for their "services".

Respironics has made available to the end user EncoreViewer. I think they are now agreeing that users should have access to their data -- although they still manufacture devices that do not track anything but compliance. EncoreViewer is not cheap and you have to buy the card reader so you end up with approximately $200.00 or more to track your data. At least it is available.

In my opinion the RT at the DME probably didn't know beans about the data!!!!! At a local DME where I picked up my first machine the RT knew nothing about cpaps or data!!!!! I was prescribed a "smart cpap with heated humidifier with a pressure of 8 -12". I was given an M series Plus machine set at a setting of 10. When I asked about the pressure being set at 10 I was told that it is "the way they do it" A doctor always prescribes a range of pressures and the DME picks the one in the middle to set the machine. When asked what a bipap was this same, RT told me that it was a life support unit for those near death. Obvious again she has no idea what she is talking about (although at the time I was uneducated and took her word on both pressure settings and what a bipap was).

It was never discussed with me that it would take time to become adjusted to pap therapy. After approximately 10 days of feeling worse I asked the DME if she could set my machine to 12 -- after all the script was written for a pressure of 8 - 12. She threw an awful fit and told me she knew what she was doing and she would have to talk to the doctor -- blah blah blah. When asked if she could check my data -- she told me that it "wasn't" necessary. Little did I know that the plus doesn't have any meaningful data except compliance.

Over the week-end I did a lot of research and found that a "smart cpap set at a pressure of 8 - 12" was actually an apap with a RANGE of pressure of 8 - 12. Had she supplied me with the right machine? NO WAY!!

I took their machine back and fired them on the spot. I had contacted my doctor and insurance company and had their blessings to go to another DME. When I took the equipment back into them on the fourteenth day they were very billigerent and told me that THEY KNEW what they were doing and I did have a "PLUS" machine that was considered to be a 'smart" cpap and she argued that the machine provided useful data besides compliance -- which a PLUS machine does NOT do.

How many others are dealing with an incompetent DME such as what I just described above -- far too many people!!
Comment by Mike on December 15, 2008 at 11:46am
Bill -- thanks for your comment. I think ResScan 3.7 might be available in Australia, but not here in the U.S.
Comment by Bill Bolton on December 15, 2008 at 4:36am
> My view is that if the software were available to patients

Software to do that is availoable to patients. The current release is ResScan 3.7
Comment by Doug Marker on December 14, 2008 at 2:26pm
The manufacturers are all bound by FDA regulations.

Any new machine has to get FDA approval before it can come to market. All they will tell you is they are following FDA regs. I believe the drivers are the medical profession but I am not 100% certain of this.

Doug
Comment by Mike on December 14, 2008 at 12:40pm
James, it is true that the ResMed S8 machine you link to provides some usage data on its display screen. What Doug and I are talking about is software that is available to clinicians, but not to patients, to provide more detailed, smarter data -- As one CPAPer said: "the advantage of the software is that it shows a continuum of activity during the night rather than just a digital display of all activity lumped into a few numbers. The advantage of this is that you can correlate results with other activity to get a better perspective of what is going on at a particular time during the evening. "

My view is that if the software were available to patients, folks would be more informed and involved, and you would have fewer friends who never use their CPAP machines.

Trying to contact the CEO of the manufacturer is a good idea. I have not tried that. I will, and will let you know what happens...

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