Apnea Sufferer's Bill-of-Rights

[brasshopper]

I have no idea how far out of pocket I am going to be for my sleep study. I could not find the schedule for what Medicare will pay for a split study. I presumed about $500 - and I did the same analysis and decided that, were it not for the supplies, I probably would have been better just getting an APAP if I could talk the doctor out of a prescription.

But I hope to live for another 20 years, minimum. There are costs to keeping a CPAP. I've been using scummy, uncomfortable masks until they broke from plastic age and I had to scramble to find a replacement - I'd sooner use a clean, nearly new mask. I've used hoses until they were covered in packing tape when they cracked from age - and bird bites - parrots think they are toys. I'd sooner have replacements.

If you consider the cost of replacement hoses, filters, and masks, and you consider that the CPAP machine can be replaced after five years with what is then new and hopefully more effective or comfortable technology, the initial cost of the diagnosis becomes more worthwhile.

When I got my initial CPAP machine, I was in an HMO - actually my wife was the HMO member and I was in a PPO and the HMO was covering me as if I was the primary. They paid for the initial study and the "rent to own" on my ancient cpap. When I had my retitration a few years ago, I had been ill and had reached my PPO's annual out of pocket cap, so again, the sleep study was 100% paid for. So this is the first sleep study I will be forced to copay for.

I think about people who simply can't afford the copay on a sleep study and I wonder how many are going untreated because of Medicare's strict standards. But that is how you save money on healthcare - you make people go to their pockets and you make the barriers too high to deal with.

Perhaps that is the real reason that the system is paying for a $2000 test so that they can be sure that a $700 machine is justified.

[NightHawkeye]

I have no idea how far out of pocket I am going to be for my sleep study.

Precisely the reason it is important to let people know what their options are! You knew your options, personally considered them, and decided that you would be better off with a sleep lab study, even if you had to pay out of pocket for some portion of it. Others, given the same information you had, might reach different conclusions. No doubt, many will reach the same conclusion you did, but for some people, the steep up-front charge will be too much, and still others will be unconcerned about the ongoing costs of continuing therapy.

The area of sleep apnea diagnosis is an area where it is important for folks to know what their options are, because, as you pointed out, the government and insurance industry have made coverage of the diagnosis of sleep apnea extremely inefficient.

Perhaps that is the real reason that the system is paying for a $2000 test so that they can be sure that a $700 machine is justified.

You're giving the guys who came up with this absurd stuff way too much credit, Brasshopper. This bureaucratic garbage is simply the result of years of pandering to the medical lobbies without any push back from consumers.

Regards,
Bill

[Mile High Sleeper]

My suggested edits/changes are in CAPS. They take into account some of the replies.

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 MEDICALLY OPTIONAL BUT REQUIRED FOR MEDICARE OR INSURANCE.
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 FOR PURCHASE. THE COST OF RENTING OR BUYING AN OXIMENTER MAY NOT BE PAID BY MEDICARE OR INSURANCE UNLESS YOU ARE ON OXYGEN. YOUR INSURANCE COMPANY OR DME MAY REQIRE A PRESCRIPTION IF THEY COVER THE COST.
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 TIMELY 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. GET THE PRESCRIPTION FOR FUTURE REFERENCE AND FOR DOCUMENTATION FOR TRAVELING WITH THE MACHINE.
5.) You have the right to request a generic prescription which allows you to purchase any make and model of xPAP equipment you choose. DEPENDING ON YOUR INSURANCE AND DME, IT MAY BE ADVANTAGEOUS TO GET A SPECIFIC PRESCRIPTION FOR THE EXACT EQUIPMENT YOU WANT.
6.) You have the right to comparison shop for an equipment provider, just as you would for any other big ticket purchase. CONSIDER ALL THE LOCAL DMES AVAILABLE WITH YOUR INSURANCE PLAN AND ONLINE DMES.
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. AGAIN, ALTHOUGH A PRESCRIPTION IS NOT REQUIRED FOR SOFTWARE PURCHASE, IT MAY BE HELPFUL TO HAVE A PRESCRIPTION IF YOU WANT TO GET A MACHINE WITH MONITORING CAPABILITY PAID BY INSURANCE.
10.) You have the right to expect decent service from your equipment provider. If your equipment provider exhibits a total disregard for fulfilling THEIR STANDARD OF CARE, 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

[NightHawkeye]

Thank you Mile High Sleeper for the excellent additions. Along with including all of your recommendations I have performed a number of additional edits which I hope make this list more usable and useful.

APNEA SUFFERER'S BILL-OF-RIGHTS
1.) You have the right to consider all options for apnea diagnosis. Your physician may recommend an expensive overnight laboratory sleep study, but low-cost at-home apnea testing, and no/low cost pulse oximetry screening are also available. Often DME's will provide oximeters at no charge for apnea screening. (However, Medicare and many insurance companies will not pay for apnea treatment without a laboratory sleep study.)
2.) You have the right to timely treatment upon diagnosis. Apnea is a serious condition. If your physician defers this for an unconscienable time, then request your prescription immediately. Once a diagnosis has been made, you have the right to timely and effective treatment.
3.) You have the right to your prescription for an xPAP machine. You may choose to have your physician fax or call it in to an equipment provider, but that is your option, not your physician's. It is useful to keep a copy of the prescription for future reference and when traveling with the machine.
4.) You have the right to request a generic prescription. A generic prescription will allow you to purchase any make and model of xPAP equipment you choose from the provider of your choice. However, depending upon your insurance carrier and DME, for some equipment (such as APAP, for example) it may be advantageous to request a specific prescription for the exact equipment you want.
5.) You have the right to comparison shop for an equipment provider, just as you would for any other big ticket purchase. In addition to considering all local DME's, consider online providers as well. Check with your insurance carrier to determine how much they will reimburse from each provider.
6.) You have the right to question your insurance until you obtain explicit details for what equipment is covered, under what conditions, and for how much.
7.) 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.
8.) You have the right to monitor your own treatment. Some xPAP machines provide monitoring capability via on-screen display. Others require a software package which must be purchased separately. Oximeters are also an excellent way to monitor apnea treatment and do not require a prescription. Oximeters may be borrowed, rented, or purchased. Medicare and insurance will not generally pay for oximeters unless prescribed with oxygen treatment, nor will they pay for software monitoring packages.
9.) You have the right to expect decent service from your equipment provider. If your equipment provider does not meet your expectations, then you should explore other options, just as you would when dealing with any other business.
10.) 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.

I hope that this Bill-of-Rights will continue to evolve and that folks will make additional recommendations for matters which they feel should be included.

Regards,
Bill

[Darth Vader Look]

This is a very good and informative thread especially for newbies. A suggestion I have is to add another expectation.

I expect the person I deal with at my DME or OSA equipment supplier to be up-to-date trained in the use and setup of all equipment sold by them. This will include certification training by each of the manufacturers of the equipment being supplied. Certifications are to be prominently posted so all who enter the premises can see and read.

[Mile High Sleeper]

NightHawkeye, thanks for the well written edits. I hope you add Darth's idea. Here's more rights, based on the problems snore girl and I had with a wrong prescription from Apria (see viewtopic.php?t=9438&postdays=0&postorder=asc&start=0) Please reword as necessary, you may want to shorten it. I'll include this detailed version in one of the peer coaching/patient education handouts I'm writing. Part one of two!

You have the right to check the accuracy of your prescription as entered into your xPAP machine by the DME. 1) You have the right to ask the DME for a slow and careful walk-through demonstration and explanation of all the settings on your machine, at a time when you are not stressed by the trauma of receiving your first CPAP equipment. Check each applicable setting such as compliance, therapy type (autoCPAP, straight CPAP, CPAP with exhalation relief, AutoCPAP with exhalation relief, etc.), minimum and maximum or straight CPAP pressure settings, exhalation level, mode (full night or ramp time or split night), ramp starting pressure, alert tone disconnect alarm, button lights, etc. If the respiratory therpist cannot adequately explain the settings, or you get conflicting answers to your questions from different techs, you have the right to ask a supervisor for an explanation and/or phone the manufacturer. 2) You have the right to get a copy of the clinician's Set Up Manual, packaged with your machine, so you can check the settings on your own. Although a prescription is not required, your DME may not release the set up manual without a prescription. 3) You have the right to purchase the set up manual online or get an electronic copy online.

[Mile High Sleeper]

You have the right to file a complaint with JCAHO, the Joint Commission on Accreditation of Healthcare Organizations, if you receive poor quality of care from a DME or other healthcare organization. For US domestic complaints, see http://www.qualitycheck.org/. For international complaints, see the Joint Commission Internation Center for Patient Safety, http://www.jcrinc.com/international.asp?durki=7693

[NightHawkeye]

OK, I've made the additions, but without the provider's manual. I agree that we'd be much better off if the DME's would make it available, but to tell a newcomer that he has a right to it, knowing that the DME won't release it without a battle, doesn't seem like a good plan.

So what could be added to enlighten the patient to the existence of the provider's manual.

Here's the new re-edited version:

APNEA SUFFERER'S BILL-OF-RIGHTS
1.) You have the right to consider all options for apnea diagnosis. Your physician may recommend an expensive overnight laboratory sleep study, but low-cost at-home apnea testing, and no/low cost pulse oximetry screening are also available. Often DME's will provide oximeters at no charge for apnea screening. (However, Medicare and many insurance companies will not pay for apnea treatment without a laboratory sleep study.)
2.) You have the right to timely treatment upon diagnosis. Apnea is a serious condition. If your physician defers this for an unconscienable time, then request your prescription immediately. Once a diagnosis has been made, you have the right to timely and effective treatment.
3.) You have the right to your prescription for an xPAP machine. You may choose to have your physician fax or call it in to an equipment provider, but that is your option, not your physician's. It is useful to keep a copy of the prescription for future reference and when traveling with the machine.
4.) You have the right to request a generic prescription. A generic prescription will allow you to purchase any make and model of xPAP equipment you choose from the provider of your choice. However, depending upon your insurance carrier and DME, for some equipment (such as APAP, for example) it may be advantageous to request a specific prescription for the exact equipment you want.
5.) You have the right to comparison shop for an equipment provider, just as you would for any other big ticket purchase. In addition to considering all local DME's, consider online providers as well. Check with your insurance carrier to determine how much they will reimburse from each provider.
6.) You have the right to question your insurance until you obtain explicit details for what equipment is covered, under what conditions, and for how much.
7.) 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.
8.) You have the right to monitor your own treatment. Some xPAP machines provide monitoring capability via on-screen display. Others require a software package which must be purchased separately. Oximeters are also an excellent way to monitor apnea treatment and do not require a prescription. Oximeters may be borrowed, rented, or purchased. Medicare and insurance will not generally pay for oximeters unless prescribed with oxygen treatment, nor will they pay for software monitoring packages.
9.) You have the right to expect decent service from your equipment provider. If your equipment provider is not adequately trained in the use of your equipment, or does not meet your expectations, then you should explore other options, just as you would when dealing with any other business. U.S. complaints may be filed with JCAHO, the Joint Commission on Accreditation of Healthcare Organizations http://www.qualitycheck.org/. For international complaints: Joint Commission International Center for Patient Safety, http://www.jcrinc.com/international.asp?durki=7693
10.) 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.