Newly Diagnosed and very angry

[SleepyWendy]

Hello, I was recently diagnosed as having severe sleep apnea. I had the first part of a sleep study done in August, and the second part with the CPAP in October. I finally got a CPAP machine last Saturday. Unfortunately I didnt find this site until after I got my machine, which apprarently is a brick. After reading tons on info on this site, I am now really angry at the way I have been treated throughout this whole ordeal.

It started with my pcp referring me to a sleep clinic. After I had both parts of the study, I never had any contact with a sleep specialist at all to discuss my diagnosis. In fact, I had to call the sleep center to find out what my status was. I never got a report in the mail, phone call, nothing. When I called the sleep center, they told me that I have sleep apnea and that the dme would be calling me. New York Home Health Care Equipment is the dme that finally called to set up an appt.

I have been using the machine every night for the last 9 nights without fail. I adjusted to it with no problem at all, and I don't take the mask off during my sleep. I am still very tired and sleepy when I wake up. I want a better machine WITH data because I feel something is not right with my sleeping and there is no way for me to tell what is going on. I have been waking up with a headach for 3 days now, and feeling sluggish all day.

I have a medicare HMO,(Touchstone Health NYC) and am on SSDI. According to my insurance, I pay 20% of the cost of the machine but I never end up owning it. Even after 13 months which seems to be the usual, I still will not own it. Is this normal? I feel like I have been completely taken advantage of and I am really angry about it and I am certainly going to take steps to rectify it but I'm not sure where to start. I don't know if I should go back to the sleep center and talk to a doctor, or call the dme and ask for a machine with data.

Sleep study info: Total sleep time - 281.3 min
Sleep efficiency - 77.8%
14 obstructive apneas
160 hypopneas
AHI 37.1
RDI - 39.7

_____________________________________
Machine: Philips Remstar System One w/Flex 150p set to 7
Remstar System One Heated Humidifier
iVolve N2 Nasal Mask

[purple]

I understand how you feel. Sounds like some of what is going on with your health care might be how your insurance works. Still, not cool. I think the advice of those more knowledgeable than me here is to call your insurance company, and find out exactly what you are entitled to. If you have less than month with your machine, it is possible that the DME, if you speak to them calmly and tell them your concerns, might replace your machine with a full data machine. All the DME folks I have spoken to have been great, (despite nearly everyone else's experience.) I have had a very experienced RT tell me that well over ninety percent of her DME patients did not have full data machines (we say bricks, which an RT would not use a negative term about her company products). To finish her statement, "nearly all her patients were perfectly happy without full data machines." Which explains the thinking of DME's in furnishing bricks, most do not care, or use the added features.

I know a veteran, who was just given a brick set to auto and a mask of some type. No discussion, no sleep study. Someone just said, we think you might have Sleep Apnea. they gave him the stuff, told him to go home and try it. He loves it, no complaints, says he feels great with it. Hope Medicare does not think that is the way this treatment should work. Or it will become the type of treatment we get.

I am curious if your pressures are above 12, in that, I am a big advocate of bi-level machines. However getting a bi level machine can be difficult in terms of the insurance rules to qualify for getting one, and if your pressure is not above 12, you probably do not need one. In addition, this is not a argument that you need to start now. Most insurances say that you must fail CPAP before you qualify for a bi level machine. oops, I see it now, seven. No need for Bi Level for you, or did they do a good titration to get the 7, or just give you a machine to start at 7, with the machine set to auto. It can take awhile for a machine set to auto to slowly keep raising pressure to find the correct pressure for some individuals.

Usually a new comer has more problems with finding the right mask, and making sure they do not have leaks at night. I do know that if one obstructs the outflow from the mask, one can build up CO2, and not get decent treatment.

Some have what others here call "Sleep Debt," and it takes awhile for the treatment to work.

I believe that the most important feature of this treatment is to endure through all the difficulties of getting started. Those difficulties for a lot of folks are being able to tolerate the the mask on their face, and to find the right mask for them.

For me, successful Sleep Apnea treatment was like coming back to life again. I went from waking up in the morning thinking it can not be time to get up yet, I am still tired. To: Wow, I have so many interesting things I can do today. No thought for being sleepy, because I was awake.

[princessbelle]

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[49er]

Hi SleepyWendy,

See this blog by a forum member:

http://maskarrayed.wordpress.com/2011/0 ... h-a-brick/

Can't advise you on the financial arrangement but I know knowledgeable members will come along to help you out.

49er

[Pugsy]

They gave you a PR System One Plus CPAP machine model 150?
That's the most basic of machines...yes a brick and a brick that doesn't even offer exhale relief and which was discontinued over 2 years ago when the 60 series machines were released. The 60 Series machines offer the optional heated hose along with a few other minor changes. Makes me wonder if you even got a new zero hour machine.

It's possible that your insurance (since it is like Medicare Advantage plan) doesn't do the 13 month rent to own like standard Medicare does because it can do that. My Medicare advantage plan has similar wording so that it would be a perpetual rental.

Would you have the money available to just purchase a machine out of your own pocket if the DME wants to play hard ball about giving you a machine that offers full data?
That 20% copay is going to add up pretty fast and it won't be long before you will have spent more on copay than you could simply buy your own machine for. You might check out Secondwindcpap.com for pricing on a gently used low hour machine. Model 460 or 560 in the Respironics PR System One model line would probably be the least expensive choice.

[purple]

oh, renting versus buying. That is just the insurance companies way of trying to limit their liability to pay for the machine, if you do not use it. In my case, Medicare, they wanted me to use it for like four hours a day for two consecutive thirty day periods over I think three or four months. I heard different standards from different people. Anyway. I just received a letter from my DME saying I had finished my 13 months of renting, and I now OWNED my machine. I think if it stopped working, the warranty is still in effect for several years. In any case, if the machine stopped working, got damaged, or even stolen. My DME would quickly want me to have a new machine, and so another 13 month rental would begin.

Your DME, at some point in the near future, will be desperate to get what they call data, insurance date to prove use of the machine, so the insurance company will pay the rental payments for the machine.

Also, my DME says that they only dispense new machines, which I now think is the law. so if they take the machine you now have back, and dispense a full data machine. They must EAT the entire cost of the machine that you first got. Which is why they will be more reluctant to replace your machine now than before you first got one.

In my experience, DME's have different people to do different things. One is the phone operator, usually not a good idea to expect information from them, they are just supposed to forward you onto someone else. As you know someone wants all your information to bill the insurance company, altho they might have had that if they called you, they just needed to verify it is you, and to get your signature on forms for them to bill the insurance company. Usually the folks in the local DME office do not do billing, so they are really honest when they say, "We do not know, it is more up to what your insurance company rules are than us." but do not despair, Most of the rest of them, while overworked, and not well paid, are there to be helpful to you. If you are kinda nice to them, they might respond by really trying to help. Some know very little about what they are supposed to do, as it is not a job which encourages people to build a career there. When you need the best technical stuff, beyond helping you fit a mask or talk about swapping machines.. Ask to speak to the RT (Respiratory Therapist), who has all kinds of technical certifications and the DME typically has on call. So the RT will not just jump on the phone with you quickly.

Pugsy always knows more than I do. HI Pugsy, waving frantically.

If I am wrong in anything I say here, I hope some other forum poster will come along and correct me.

[Pugsy]

Waving to Purple.....some of the Medicare Advantage plans do NOT do the 13 month rent to own thing. They do a perpetual rental and the user never owns the machine. They could do the rent to own thing if they wanted to but for some reason they have elected not to. I have a Medicare Advantage plan...and it clearly states that I would never own the machine. I don't know if this has changed with the 2015 benefits but it was there in the 2104 benefits book.
So it is very possible that in this situation the OP's insurance is one of those perpetual rentals. Medicare Advantage plans often mimic standard Medicare benefits but not always.

[SleepyWendy]

Thank you all so much for your replies. I took your advice and called my insurance company. The customer service rep was able to call the dme and we had a conference call. I could tell immediately that the dme guy was a slick talker. I told him that I was trying to find out what cpap machines I was entitled to and if I could get a data capable machine (of which my insurance rep had no idea). The dme says most insurance companies will not pay for a data capable machine and that all they are required to do is provide me with a cpap machine. Then he goes on to tell me that he has sleep apnea that is twice as severe as mine and he uses a basic machine and that no cpap machine can cure apnea. I was very clear in telling him that I don't feel like the machine is helping and I feel a data capable machine would be very helpful by giving me feedback into what's going on. Then he says something about Medicare having a contract with the dme's and the contract does not require giving a patient a data capable machine but he is going to look and see if he can find the contract between his company and medicare and that he will call me back hopefully tomorrow because he is really busy. Meanwhile, the customer service rep couldn't even answer the basic question and tell me what kind of machine I can get because he doesn't have access to that kind of info. I suspect that my insurance company has outsourced their customer service to India. He suggested that I wait for the dme's call back.

I checked my paperwork from the dme and it says that if I am noncompliant in the machine's use (21 days out of 30 for a min of 4 hrs per night) then the machine will be converted to a private pay item and I will have to by it for $880. The list price is only around $350. Compliance is not an issue at all. I guess I am just stuck with this machine as there is no way I can pay for one myself. I could tell the dme is not going to call me back. Should I contact the sleep doctor and tell him that I dont feel it's working? I don't know what else to do. Again thank you for your replies.

[Julie]

Wendy - I can't address the insce. stuff too well as I'm in Canada, but I hope you read the Maskarrayed link and don't assume you're stuck yet. If nothing else, we can direct you to places where you can get less expensive, slightly used but well recond'd machines on your own, and very good (new) masks (I've literally never heard of the one you mentioned!) in a large variety to suit you.

[BlackSpinner]

The billing code used for bricks and data capable machines is the same. The profit is different and that is why he won't provide a new data capable machine.

Check out second wind site for gently used modern machines and when you get it hand the piece of crap back to the asshat.

Note severity has nothing to do with machine needs, you could have mild apnea and require a BIPAP or ASV. Severity has nothing to do with pressure needs either.

[Pugsy]

Then he says something about Medicare having a contract with the dme's and the contract does not require giving a patient a data capable machine

Technically this is true because most docs just write the RX for
"CPAP with heated humidity at so an so pressure"
and DMEs who have profit as their number one goal can then dispense the most basic brick machine because it costs them the least and the insurance companies pay a set amount (based on HCPCS code E0601 and that code covers the basic cpap brick up to the full data APAP capable machine) and they are profit oriented and not patient oriented.

Your hands are likely tied being as you are in an HMO type of program and you may not have any other alternatives for a DME supplier but I would check to make sure. Not all DMEs are so profit oriented but HMOs are profit oriented.
You may or may not have some place else available to get a machine from.

Also....you can talk to your doctor and see if he/she will write the RX in a manner that the DME is forced to supply a full data machine. If the RX is written for specific item....the DME is forced to comply and can't substitute a machine that doesn't meet the RX requirements. I usually tell people to harp on leak detail...if a machine will record leak detail then it records other data and leak detail is critical to effective therapy. If leaks are big then therapy is ineffective and without leak detail we have no idea if a person is feeling crappy because of big leaks or something else.
So if the doctor is willing to help you out (and you need to harp on leaks) by writing the RX so it says something like this "CPAP with efficacy data recording to include leak detail and heated humidifier at so and so pressure..mask of patient choice" and checks the Dispense as Written box...then the DME has to fulfill the RX and get you the full data machine. BTW any doctor can write that RX...doesn't have to be a sleep doctor.

I bet the DME won't be doing anything to help you out unless he is forced to but you can force him to do it if you get your doctor behind you. If you could use another DME who would give you a full data machine..that would be even better because then you could tell this yahoo where to go but HMOs are notorious for going ultra cheap unless someone forces them.

If money permits...you can get a full data machine and the latest machine for a lot less than the $800.
http://www.secondwindcpap.com/Used_CPAP.html
At the above website there is a model 450 PR System One Auto IQ for $275...and it will work with your current humidifier (is it perpetual rental also?).

There's PR System One model 460 Pro CPAP for $289 but doesn't include humidifier and your 50 series humidifier won't work with a 60 Series machine.
To know the Series...look at the last 2 digits of the model number
your 150 model...that's a 50 series
if you had a 160 model that would be a 60 series (I don't think they even make a 160 any more)...260 is still a brick.
In the PR System One model like you need model 450 or higher to have full data.

50 series machines don't have the heated hose option....that's the primary difference between the 50 series and the 60 series.

You can get a 550 model for $595 and that price includes humidifier
https://www.cpap.com/productpage/respir ... -flex.html

I am mentioning the Respironics because it probably is the least expensive of the full data machines...the other being ResMed S9 full data models but even used they tend to cost more than the comparable used model in the PR System One line.

So you do have some options.
Find out if you own the humidifier though...it may not be part of the rental agreement. I don't know how those are handled. If you own it and it's not part of the rental...you can maybe add a full data machine to it.
Gently used low hour machines will work just fine.

[grayghost4]

I have a used pr450 with humidifer and hose that I will sell for $140.00 Including shiping. It has 38 hrs. total time .

Sold

[Julie]

Ummm - my machine has full data and is much less expensive than the S9 Autoset or PR S1 60 series.

[Pugsy]

Yes...the Devilbiss Intellipap does offer full data and can be less expensive but the data is more limited (no wave form) and to get anything other than the Smart code data stuff one has to purchase the extra module ($100 for just the module from cpap.com or $145 for module and software from SecondWindcpap.com http://www.secondwindcpap.com/SmartLink.html) so they can use the software and by the time one purchases that module the cost is more than what a used PR S1 machine would be.
That module cost has to be figured into the mixture and I personally wouldn't be happy with just the smart code data if I was a newbie. I think that the software data and graphs are important. Now for someone who is a cpap veteran and already has their therapy dialed in..yeah the smart code data is probably sufficient but I don't/can't recommend it to a newbie because I think that the software reports are really important.

Secondwind cpap.com has a new DeVilbiss Standard for $379....add in another $100 for the module and it costs more than a PR S1 machine would cost and we are still not getting wave form data.
Used for $325...but still needs that smart link module. $425 total.

The most cost effective machine would be a PR S1 full data machine that would work with the existing humidifier (assuming that isn't a rental) and one of those could be the $275 for the 450 Auto IQ machine.
PR S1 humidifiers...50 and 60 series can be bought for $70 at Secondwind.
The PR S1 Pro 460 machine at $289 plus $70...is $359 which is only $34 more than the used DeVilbiss at $325 (which still needs the module and is a fixed cpap machine where the 460 has apap mode available and doesn't require anything else to use the software and all data is available on the PR S1 including wave form).

The DeVilbiss machines are a little cheaper if someone doesn't need or want to use software and the Smart Code data happens to suit their needs. But with the Smart Link module costs added in...it's not any cheaper at all and can cost more depending on which model Intellipap.

Actually.....

I have a used pr450 with humidifer and hose that I will sell for $140.00 Including shiping. It has 38 hrs. total time .

would be a great deal for someone.
They don't get any cheaper and with only 38 hours on it...that's like new in my book.

[mike1953]

Sent you a PM with information about medicare assistance that is no fee attached.
New York SHIP Website:
http://www.aging.ny.gov/HealthBenefits/Index.cfm
Phone: 800-701-0501
Program Name: Health Insurance Information, Counseling and Assistance(HIICAP)
About: HIICAP stands for Health Insurance Information Counseling and Assistance Program. It is the New York State Health Insurance Assistance Program (SHIP). It receives federal funds from the Centers for Medicare & Medicaid Services (CMS) to operate a statewide network of local programs. HIICAP educates the public about Medicare, Medicaid, managed care, EPIC, and other health insurance options and issues. HIICAP assists Medicare beneficiaries to access needed health care and to apply for programs such as the Medicare Savings Programs