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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 James J. Simms on December 14, 2008 at 9:11am
http://www.resmed.com/en-us/products/flow_generators/s8_elite/s8-elite.html?menu=products

This is all new to me. I have been diagnosed with sleep apnea for three years and I have an old machine and an old mask. I thought that any monitoring that was done was to ensure the payers i.e. the insurance companies, that CPAP machines were actually being used. I know several friends who tell me that they have sleep apnea, were given machines but never or almost never use them! At the company's website it says about this particular machine that among other benefits it helps the patient.”...Comprehensive efficacy and usage data helps you monitor critical trends." This seems somewhat none-specific but it would also seem to me to imply something other than just checking that the machine ran for at least four hours. Have you tried contacting the CEO of the manufacturer?
Comment by Doug Marker on December 14, 2008 at 4:56am
I agree that anything that would ensure that some monitoring gets done is going to be helpful but I am sure it will be at an even higher cost.

The opposite to this is allowing people the tools to track their own therapy. This is a constant battle in therapy circles but I gather it involves a clash of wills between the medical profession & the rights of us cpapers to actively get involved in our own monitoring & regulation. It is only (afaik) in the US that it is against the law for manufacturers to explain to people how to change the settings on their machine.

Another challenge is that cpap is still so new that the respiratory profession are struggling to keep on top of it as new twists & turns emerge along with the growing body of knowledge. There are many people who I fear are incapable of adjusting their own machines, but, I believe I know a lot more who I trust to do so. Cpaptalk.com hosts an awful lot of capable people.

The hope is there that in time the machines will have so much intelligence that there are few adjustments that anyone can make as the machine will be capable of working it out.

The Resmed Vpap Adaot SV is getting close to that goal but I believe there is still a long way to go & we cpapers do need professional assistance but good professional support is damned hard to find.

Doug
Comment by Mike on December 14, 2008 at 2:24am
Doug -- I think those that care about the CPAP industry's success need to re-jigger the definition of compliance to sweep in more than quantity of therapy and go rather to quality of therapy --- i.e., not only whether the machine is blowing for > 4 hours, but whether it's reducing AHI while maintaining an acceptable leak rate. Right now, it seems the insurance companies will reimburse based solely on quantity, and not quality. I would advocate a more stringent pay-for-performance model. This is good for the patient, because he/she gets improved quality of care. It's good for the manufacturer because (i) more undiagnosed folks would get into the revenue "funnel" once CPAP shows more success with its existing user base, and (ii) existing customers wouldn't give up on CPAP as much as they do now. It's good for insurers because they would only pay for quality results. And it's good for the healthcare system at large because fewer cases of sleep apnea would degenerate into acute medical emergencies like heart attack and stroke which bring people into emergency rooms at very high cost to society.

So even if technically the DME could get away with not as you say "actively" monitoring therapy, I don't think it should be able to. Insurance companies should reject reimbursements without objective evidence of patient success, or at least evidence of a plan for such success, with checks on whether it is being carried out.

Alternatively, I would advocate a system where the DME gets paid purely for the equipment, so that it's really providing a commodity without any service. That way patients would pay less for the equipment and could use the savings to pay someone, like an RT, who could do the work that needs to be done: active monitoring of a patient's performance.
Comment by Doug Marker on December 14, 2008 at 1:40am
Mike,
It is clear from what you say that your friend had this expectation. There is still in my mind though what makes this case different in that I am sure we agree that DMEs have an obligation to the paying organization to ensure compliance. Lets take that as a given.

Was the expectation of your friend an extra ? (above and beyond the normal rental / leasing payment).

The reason I ask is that I know the *only* way I get any attention from my RT is when I visit him at my instigation & I pay a fee (in my belief an extra high fee for what I believe he does). I take my data charts to him & he gives his assessment.

It seems to me that short of paying any RT a fee for a service, the service can never be assumed. I am still wondering if there were assumptions as to the extent of the service.

If you understand that such a service was contracted then that DME sure as hell has an obligation to deliver that service & deserves 'curry' if it doesn't get delivered.

One reason I ask these questions is that knowing how the Restraxx was designed, it seems unusual to use one just to track compliance (a very expensive way to do it). If the DME is charging a higher fee to the insurance company claiming the Restraxx expense justifies it then I can understand your friend expecting the Restraxx to have some use to him other than making life easy for the DME at others expense.

Doug
Comment by Mike on December 14, 2008 at 12:10am
First off, thank you for your thoughtful commentary. It is clear you are very knowledgeable, which we appreciate irrespective of whatever differences in opinion we may have. With that being said, I can assure you that from my friend's perspective, the Restraxx was there not only to enable the DME to get paid, but to give some meaningful feedback on how his treatment was progressing, and if adjustments needed to be made. In fact, my friend made this goal explicit to the DME, and the DME set him up with Restraxx for this very reason. This particular DME does have RTs on staff, although I don't know what role they were playing, if any, in my friend's situation.
Comment by Doug Marker on December 13, 2008 at 11:26pm
Before qwe make the mistake of misinterpreting each other.

Can you clarify for me

1) What was the Restraxx there for a) to monitor compliance ?, or b) so an RT could analyse each nights data ?

Once we have that cleared up we can then get around to the DME

I understand that DMEs supply medical equipment and set it up based on the recommendations of an RT or doctor. I may be wrong about this & am sure you can help me better understand.

If the DME aso acts as an RT or doctor then was there an understanding that the DME acting as RT would analyse your friends data.

If yes then we have the heart of your issue and will be better able to take it up.

Thanks

Doug
Comment by Mike on December 13, 2008 at 6:32pm
Judy and Doug,

Both of your responses concern me, but in different ways. I will address each in turn:

Judy --- nowhere in the blog did I blame the manufacturer of ResTraxx (ResMed) --- they have developed a wonderful tool that, in this case, was not used to its full potential by the DME.

Doug -- you mean to defend the DME on the basis of the DME not being paid to "actively analyze" Dan's data each night. It seems to me you are splitting hairs. By your reasoning, the patient is to blame because he didn't say the magic words: "please ACTIVELY analyze my data" so that I can know if this thing is doing me any good. Patients are given these devices for one reason, and one reason alone: to get proper treatment for a serious medical condition. If we are content with the blower merely running for four hours a night, that defeats the patients' expectations, and everyone's goals for the therapy. Now, you say the DMEs are not being paid to do this, but they do command a premium over online CPAP providers like CPAP.com precisely because they ostensibly provide customer service.

As for the slander argument, even if I did call out the name of the DME, which I did not, in the U.S., truth is an absolute defense to a slander claim.
Comment by Judy on December 13, 2008 at 6:10pm
I will add that "my" understanding is that ResTraxx wasn't even developed so much for the use of DME suppliers as it was developed for the use of the sleep labs and sleep doctors so that THEY knew when one of their patients needed attention.

Most insurances purchase xPAP devices for their insured via some form of "capped rental", i.e. a monthly rental is paid for x amount of months and then the xPAP becomes the sole property of the insured. During this time the insurance companies have a reasonable right to be reassurred that the insured is using the xPAP that they are payng so dearly for.

It may be that the DME supplier elected to utilize ResTraxx to monitor the insured's compliance but they do so at their own expense. Insurance isn't going to pay extra for the compliance data they require as part of their contract w/the DME supplier to purchase the xPAP device and accessories. There are cheaper ways for that compliance data to be collected and provided - such as the insured sending in their data card on a regular schedule.

Don't condemn the manufacturer who has developed a good way for monitoring not just patient compliance data but also therapy results. Again, it is the manufacturers who are way ahead of the sleep profession in developing devices to aid in monitoring and detecting therapy results and complications and it is the sleep profession, most notably the local DME suppliers who are failing in their responsiblities to the patients. Obviously, this DME supplier has elected to spend the money to obtain an easy way to prove patient compliance for reimbursement by the insurance companies for the xPAPs w/o care or regard for their patients's therapy, health and welfare.

Put the blame where it belongs. Squarely on the shoulders of the DME supplier. But don't assume that insurances are paying extra for this compliance data.
Comment by Doug Marker on December 13, 2008 at 4:27pm
Mike,
I came to your blog entry because someone at cpaptalk posted a link warning people in regard to RESTRAXX & that caught my attention.

When I read your blog I was left thinking that this is unfortunate in what is being conveyed because it seems there are several issues that resulot in quite different interpretations of the story.

What isn't said is if your friend (or the insurance company) is paying the DME to ACTIVELY analyze his data each night. If anyone is paying the DME to do that then all the points you make are very fair comment. But, if the DME is ONLY being paid normal rental and his obligation is to ensure compliance and report that back to the insurance company in order to maintain their commitment to payments, then the DME is being slandered and you owe it to explain this point rather than imply that your friend is not receiving fair service.

The reality in this world is that we largely get what we pay for & the heart of any matter like this is to know what we are paying for are what we are getting.

It seems to me your blog may now be used to spread a false impression that using a RESTRAXX is a commitment to a service that may not exist ...

"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!"

This point is certainly of concern to your friend but can you spell out more clearly if the DME was contracted to monitor your friends nightly detail because the evidence presented is that he was only required to monitor compliance which he was doing.

DSM

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