Apnea Sufferer's Bill-of-Rights

[NightHawkeye]

From recent Private-Messages and recent forum exchanges it has been too painfully apparent that many folks simply do not know their rights when it comes to dealing with healthcare providers. To help remedy that situation I offer the following:

Apnea Sufferer's Bill-of-Rights
1.) You have the right to discuss with your physician all options for apnea diagnosis and treatment, not merely the expensive overnight sleep lab study. A sleep lab study may be unwarranted.
2.) You have the right to request low-cost at-home oximetry monitoring. either as a means of testing for apnea, or simply to monitor your treatment. Oximeters may be borrowed, rented, or purchased, and do not require a prescription.
3.) You have the right to timely treatment upon diagnosis. Apnea is a serious condition. If your physician defers this an unconscienable length of time, simply request your prescription immediately. Once a diagnosis has been made, you have the right to effective treatment.
4.) You have the right to your prescription for an xPAP machine. You may choose to let your physician fax or call it in to an equipment provider, but that is your option, not your physician's option.
5.) You have the right to request a generic prescription which allows you to purchase any make and model of xPAP equipment you choose.
6.) You have the right to comparison shop for an equipment provider, just as you would for any other big ticket purchase.
7.) You have the right to question your insurance company until you obtain explicit details of what equipment is covered, under what conditions, and for how much.
8.) You have the right to timely equipment delivery from your equipment provider. If the first equipment provider you talk with cannot perform this service, then you are free to find another, or to purchase your equipment on-line.
9.) You have the right to monitor your own treatment using a machine designed for that. Such machines may or may not require software to be purchased separately.
10.) You have the right to expect decent service from your equipment provider. If your equipment provider exhibits a total disregard for fulfilling his legal obligations, then you may want to explore other options, just as you would when dealing with any other business.
11.) You have the right to a copy of your medical records, including sleep study, and laboratory findings in a timely manner (with a very few explicit exceptions). The cost for exercising this right is by law limited to the actual cost of copying and distributing the requested documents. -Ric

Last time I checked I still live in a free country where folks are free to make their own healthcare decisions, not a country with a state controlled centralized medical care system.

Please offer additional items for this list which you believe appropriate.

Regards,
Bill

[wading thru the muck!]

Bill,

GREAT POST!

IMO, this is the kind of "stuff" the ASAA should be doing. They should have something like this printed on little wallet cards that we can all flash in the face of anybody who tries to step on our "Apnea Sufferer's rights"

This would be a fantastic addition to the CPAPopedia.

[Wulfman]

Bill,

I agree! I imagine there might be more than 10 though....

There's just one problem with this and the "Users' Group" issue and Offerrocker illustrated it in another thread:

"Too soon old, too late schmart - an old saying, is still too applicable".

The problem (question) IS......How is this bill of rights and other users' group information going to get to the apnea sufferer BEFORE he/she needs it (and by then it may be too late?.

We KNOW the DMEs and doctors' offices aren't going to let this kind of information lay around in their offices. I think we can probably rule out getting the insurance providers to disburse this information, too.

One comment on your right #2. Many/most insurance providers REQUIRE that a sleep study be performed......up to and including a copy of the sleep study report/results be sent to them. (Mine did)

Den

[NightHawkeye]

The problem (question) IS......How is this bill of rights and other users' group information going to get to the apnea sufferer BEFORE he/she needs it (and by then it may be too late?.

Yep, we're all works-in-progress aren't we. I believe in doing the "possible", Den. Folks make it here at various stages in the process. Some before they even make an appointment with a physician to talk about apnea. It seems that some folks just already know long before they ever discuss the matter with a physician.

And, as a practical matter, this list is an embodiment of a general philosophy for dealing effectively with healthcare providers, and is applicable to far more than simply apnea.

One comment on your right #2. Many/most insurance providers REQUIRE that a sleep study be performed......up to and including a copy of the sleep study report/results be sent to them.

But, they don't generally stipulate how the study is to be conducted. In my own case, as I've stated before, I failed sleep studies twice, yet my insurance paid 100% for my initial equipment. My general understanding is that great flexibility is left to the diagnosing physician. We already know that's true in the definition of hypopneas for sure.

For many folks insurance doesn't really apply anyway though. I believe that the number of folks in that category is much larger than is obvious on this forum. Here, most folks have gotten sleep studies which were paid for by insurance. Yet, we also have prominent examples here of folks who performed self-diagnosis and who, in discussions with reasonable physicians, received prescriptions for the treatment machines they needed.

I believe that my listing merely makes that point a little more prominently.

Regards,
Bill

[Guest]

Bill,

Excellent effort and well thought out.
I am sure your effort is well appreciatred.

DSM

[DSM-Guest]

Den

>>
The problem (question) IS......How is this bill of rights and other users' group information going to get to the apnea sufferer BEFORE he/she needs it (and by then it may be too late?.
<<

Good point, is it one we can solve, I doubt it.

But, for those folk who do do their research using the Internet (and the numbers appear to be growing), we can at least have a web site set up for the users group, that can be part of our small effort at helping these people get answers they may not be getting elsewhere.

I am happy to make a small dent rather than no dent .

The hope is that enough small dents become a large one.

DSM

[Banshee]

Fantastic post!! Where did ya find this info at?

I want to thank you for all of us, I believe this will help so many of us who are getting run over.....

There should be a way to make this Subect BOLD, Capital letters and a bright color for it to stay at the beginning of this message board. I think that way, alot of people will see it.

Just a thought.

[Offerocker]

NightHawkeye:
Thank you for the thorough and concise listing.

I'm having a problem with DME re (#2): she said she will NOT release a pulseoximiter for overnight unless she has a PRESCRIPTION!!! Well, it's not exactly invasive surgery here! And they don't sell oximiters, so I really don't know what her problem is, except to aggravate. OR, could be she's that lacking in knowlege and the laws. So my problem is that I have NOTHING to stick in her face to force her to do this. I suppose it's not good enough that I want to know; if it's really needed, someone with a couple inits after their name would request it. I am in posession of a Dr.'s report that states in followup that I have this done! And that's when I'm supposed to visit the Magic Kingdom where those things get done naturally?

There should be a way to make this Subect BOLD, Capital letters and a bright color for it to stay at the beginning of this message board. I think that way, alot of people will see it.

And WHY CAN'T WE JOIN FORCES AND DO EVEN MORE? If anyone can setup a WebSite, and possible have it tagged with cpap.com, it would get lots of hits. "First-stop shopping", if you will. I'm willing to do whatever I can to help with this. I'll try to think of anything that may have been missed from the list, but doubt it. Maybe some warnings would be helpful also?

I believe your idea is invaluable, NightHawkeye. I sure wish I had it provided that suscinctly when I started out, instead of first learning the jargon, and asking the wrong questions, etc.

"There never was a great character who did not, at one time or another, break the rules and make new ones for himself" ....I think that was Andrew Carnegie Not all rules are universal, nor can they endure without modification.

[Ric]

Bill,

Very eloquently stated. A lot of time and thought went into that. Most Excellent!

The AHA (American Hospital Association) had a very explicit "Patient's Bill of Rights", twelve of them: (AHA Patient's Bill of Rights), which were literally carved into a large plaque in the doorway of the medical records department near where I worked for many years. I say "had", the plaque is down, replaced by a leaflet dispenser which (when not empty as usual) holds a copy of the AHA "Patient Care Partnership", which officially replaces the "Bill of Rights". Apparently too many patients were taking it too seriously, and expecting, basically... their rights. Those rights still exist, of course. The "Patient Care Partnership" is so vague as to be meaningless... "We're here to HELP!" type stuff. With that on background, I appreciate your concise, explicit language. I'm sure some individuals who read this for the first time will be *SHOCKED* to realize they have choices, rights, expectations, as well as a responsibility to manage their own health.

If the document is open for amendments, I would add one actual real LEGAL right: the patient (or a designated representative) is entitled to a copy of his/her medical record including the sleep study, laboratory findings, and just about everything else contained in the medical record, with only a few explicit exceptions. And all of the above, IN A TIMELY MANNER, usually 5 days. The cost for exercising this right is by law limited to the actual cost of copying and distributing the requested documents. (Your item #4 touched on part of that, the right to a copy of the prescription.)

IMHO, your post deserves a page one sticky.

Regards,

-Ric

[NightHawkeye]

Fantastic post!! Where did ya find this info at?

Thanks, Banshee.

It was simply the logical extension of a post I made yesterday mimicking "Miranda rights" (not a particularly good post, at that). But the post made me realize that most folks who come here know precious little of what their actual rights in regards to dealing with healthcare providers are. The need wasn't so much for "Miranda rights" but for the actual patient rights we have as individuals.

And so I hammered out, as best I could, this "Bill-of-Rights". An additional right posted by Ric was added this morning, and probably additional rights will be added as others point them out.

Regards,
Bill

[Zookie]

I am new to your board but I am very impressed by how knowledgeable you are and I feel a need to complement you for this gracious and much needed information.

May I ask if anyone knows how to go about renting equipment instead of just shelling out 2,000? I have what I believe is a very high pressure (20) and would like to try something better than the CPAP I was given.

[NightHawkeye]

May I ask if anyone knows how to go about renting equipment instead of just shelling out 2,000? I have what I believe is a very high pressure (20) and would like to try something better than the CPAP I was given.

Hi Zookie. Welcome to the forum.

I haven't personally rented an xPAP, but I know that my insurance company's preferred approach is to rent an xPAP machine for a period of ten months, at which time the machine is considered to be paid for. Before that period has been completed the machine is returnable without penalty, I believe. I assume that many/most DME's provide equipment in a compatible manner. So, for a rental, a local DME might be a place to shop.

As far as upgrading equipment, many folks have had problems getting APAP machines through DME's; not impossible, but apparently DME's don't get reimbursed as much for APAP's, and are reluctant to provide them until all other earthly means of persuading you to accept delivery of a CPAP has been tried. An easier path for many seems to be getting a BiPAP machine. Many folks report having been prescribed BiPAPs because of high pressures such as you have.

Of course, I'd recommend doing a cost analysis to determine exact cost of renting, after considering rental and deductibles vs buying outright from an online supplier.

Regards,
Bill

[brasshopper]

While I think that the capabilities of the new generation of machines and the actual cost of even top of the line CPAP machines changes the equation, the law has not caught up to this.

Medicare's regulations essentially have the force of law - if you violate them, while you are billing medicare, you can be charged with fraud. They currently state that you need a sleep study to be dispensed a CPAP and that home recording is not good enough. Rather than allowing the doctor more leeway, over time as it is recognized that OSA is more common than thought, they are allowing less - making the hurdle to get treated higher. If a medicare patient fails their sleep studies, say because they can't sleep for the full required two hours, they simply can't get a cpap covered by Medicare as far as I can tell.

Any other insurance company regulations are likely to be similar - because they are either based on Medicare's regulations as to medical necessity, or they are based on the same consensus statements. (Of course, if someone was trying to save money, they might actually require a statement of medical necessity for a sleep study.)

I searched on oxymeter - thanks for the clue. I noted that Aetna specifically says that they consider the use of oxymeters "When used alone as a screening/testing technique for suspected obstructive sleep apnea." as experimental and not covered - and they don't have any indication as to when they do cover them for OSA - unless you are getting supplimental O2, in which case they cover them for evaluation of the effectiveness of the O2 - but if the O2 is given in a nasal cannanula or in a CPAP the indication is the same.

So they would probably pay for a full study which included an oxymeter track, but they would not pay for a oxymeter only study - or monitoring. I assume you could buy your own oxymeter.

Part of the problem is that the NIH does "consensus statements" which then become the basis for regulation. The last consensus statement on sleep issues for older people was done in 1990, and the world of sleep treatment has completely changed - NIH funded three or four companies in 2002 alone for investigation of sleep apnea with novel methods, or less expensive screening, or home recording, but this ancient concensus statement makes polysomnography as the gold standard.

I suppose that if one were really worried about fraud, that one could fake a oxymetry test really easily. One could simply hold their breath over and over, and over, more or less once a minute. The AHI would be 60, right? Continue for 2-4 hours and you are done. Without polysomnography, the technician has no way to determine if the patient is actually asleep or faking, and I think that the emphasis is on determining if people are faking.

http://www.cms.hhs.gov/mcd/ etc... indicates that continuous overnight monitoring may be covered given that the physician thinks it is appropriate and there is a diagnosis of sleep apnea. That is another reason to get the diagnosis established.

You know, it seems to me that these days, if you have a patient who, say, has a sleep partner who notes snoring and interrupted respiration, and if the patient is also complaining of less than restful sleep or has some other minor indications, that there really is no reason to do a sleep study - you can be sure enough that they have sleep apnea, and it would be reasonable and prudent to just prescribe them an autopap, with a fairly broad range and recording capability, and then review the data from the autopap. The difference between the cost of the autopap and the cost of a single pressure CPAP certainly does not justify the test. Alternatively, you can use a novel device like Accutest Sleep Strip and combine that with overnight use of a recording pulse oxymeter. If the patient is just snoring and does not have other symptoms, this can distinguish the snorer from the person with apnea. The person who has 5-15 events per hour and who has other symptoms may still need a sleep study since this device will not indicate apnea at all.

But those technologies did not exist in 1990. The 1990 statement is the most current one from http://consensus.nih.gov and so we are probably stuck with 1990 technology, and the concomittant expense until another statement is issued. Most of the more recent statements seem to be concerned about the allocation of funds to various research and development grants.

I could certainly discuss all the various options with my doctor. But the end result is that if I want Medicare to cover my supplies (over years, if you replace your mask every six months, the masks will cost more than the machine) and filters and so forth, well, I have to have the sleep study. No choice at this point.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): medicare, CPAP, AHI

[NightHawkeye]

Brasshopper, I have no doubt that you are correct with regards to Medicare/Medicaid. However, for individuals covered by insurance the situation is not quite as cut-and-dried as it appears at first glance.

Individual insurance coverage can vary quite a bit, so I'll just run a few numbers to illustrate when one might be better off financially by foregoing a sleep lab study. Assuming one has an insurance which requires use of a local DME and has a deductible with 80% coverage of everything above the deductible amount, then the cost of a sleep study done in the usual manner is about $500 ($2500 x 0.20) to the patient, plus whatever portion of the deductible has not already been paid. Assuming the DME wants $1000 for the machine, that adds another $200, plus if the DME charges $250 for the mask, then the patient cost for that is another $50. The total cost to the patient is then $750 for a very basic CPAP machine and mask, but without humidifier. The same equipment can be purchased from CPAP.com for about half that price.

Financially, there simply is no advantage to this hypothetical patient to have a sleep study performed. This insurance coverage I listed is pretty typical, I believe, which means that most folks who are already pretty sure they have apnea, ought to at least think about whether there might be any benefit to having a sleep study done for other reasons. From this simple analysis, it seems pretty clear that this apnea patient is much better off financially to forget about insurance altogether and simply purchase the equipment out-of-pocket.

Are there other reasons to have a sleep study done? Sure, there are. There are plenty of things that can go wrong while one is sleeping, however, the number one thing that goes wrong is simply obstructive sleep apnea. As I stated earlier, we have more than one person here who self-diagnosed their own sleep apnea.

Regards,
Bill

[rested gal]

You know, it seems to me that these days, if you have a patient who, say, has a sleep partner who notes snoring and interrupted respiration, and if the patient is also complaining of less than restful sleep or has some other minor indications, that there really is no reason to do a sleep study - you can be sure enough that they have sleep apnea, and it would be reasonable and prudent to just prescribe them an autopap, with a fairly broad range and recording capability, and then review the data from the autopap. The difference between the cost of the autopap and the cost of a single pressure CPAP certainly does not justify the test.

brasshopper, you'll be pleased to know that you're thinking along similar lines as what a prominent board certified sleep doctor suggested:

Not Every Patient Needs to Go to the Sleep Lab Powerpoint presentation by a well respected board certified sleep doctor/pulmonologist, Dr. Barbara Phillips, at a meeting of the American Lung Association of the Central Coast - November 2004

I agree.