UNIVERSAL SLEEP APNEA PATIENT BILL OF RIGHTS

[zoocrewphoto]

2) No Full Face Masks unless the patient has problems with nasal masks. They leak more and can make apnea worse because they can push the jaw back.

Before I begin, yes, I read the part that says "unless the patient has problems...". But define problems.

You misread my intent. DMEs and clinics often push FFM on patients because it's easier on the provider, not because it's better or easier for the patient. I think you should be able to get a FFM if you want one.

How about "No sleep professional will steer a patient into using a FFM unless it is in the patient's best interest because of mouth leaks or other problems with nasal masks for that particular patient. FFMs should not be recommended because it's less work for the sleep professional. The patient should be allowed to choose a FFM if he/she wants one.

The sleep professional should work with the patient to get the right mask for the patient and make it work."

i.e. Try to make a nasal mask work first before recommending a FFM.

I think it's especially important to not foist a FFM on a patient during a sleep test unless there are problems with nasal. FFMs can skew the test results upwards.

I would revise it to say that the sleep techs and DMEs should be required to show a variety of masks of each type to the patient and explain the differences. For example, maybe 5 different styles of nasal masks, at least 3 with pillows, at least 3 full face masks, and a total face mask. Then let the patient decide what they think will work for them. The Techs and DMEs should be willing to explain and answer questions, but NOT recommend one type directly. For example, they can tell you that if you think you need to breathe through your mouth most of the night, then this type would probably be more useful for you. If you are comfortable breathing through your nose, then nasal masks tend to be the easiest to work with. But leave it up to the customer to decide. We know ourselves better than anybody, and given a table full of masks, I bet many of us could pick a winner on our own, if we could pick them up and look at them.

I knew I wanted a full face mask before I got there. I never would have gone to the sleep study had I not known of full face masks. And I would have refused if they insisted I try a nasal mask. I would have been unable to sleep, and in tears from being forced to try. It would have been a completely different experience had I been forced to try a nasal mask.

[asleep@thewheel]

After struggling with many inefficient DME's and that is being kind, I finally found a DME who only specializes in Sleep Apnea. They send me enough refills for 6 months, they handle all the insurance paper chase and do a great job at it, and are always checking to see how my little girl is adapting to her cpap therapy.

i am a big fan of sleepquest.com
cpap.com for my extra helpful aids,
remzzzz's for my daughter's facemask liners.

It's this type of info that literally needs to be spoon fed to the first timers so they don't stumble out of the blocks.
Let's make it as easy as possible for them to get the help they need. Every case is different due to how our bodies manifest the years of abuse/neglect that sleep/oxygen deprivation takes on all of us.

[robysue]

I'm not sure how this would apply in other countries with socialized medicine, but in the U.S. I think we desparately need the following:

The right to be given a copy of our prescription, to be informed by our insurer of exactly how CPAP equipment and supplies are covered by our insurers, and to be informed that we have a right to choose any DME or supplier we wish.

In our non-socialized medical system, the above is crucial.

Under current patient/doctor law, we already have those rights. One may need to make the doctor's employees aware of it but your prescription is yours as part of your medical records. It won't be offered but ask. If you are refused, then cite ERISA rules. You also have the right to use any DME you like...your insurance company does not have to pay them as any other provider if they hold contracts with certain other companies. In that case, you pay the penalty for using someone else. It is our responsibility as insured's to know our policies and rights. Call your customer service area and ask questions. Read your plan description and documents. If you didn't get them or have access to them online, again, make it known that it is your right and demand the information. All the laws in the world don't help in one doesn't inquire. As is often said in court, ignorance is no excuse.

Yes, we already technically have the right to have a copy of our prescription, the right to a copy of our medical records, the right to choose the DME, and the right to demand info from our insurer concerning reimbursement rules. But the average newbie is sorely sleep deprived and the whole point of a bill of rights is to make the process much more transparent so those rights are not ignored or violated on a regular, systemic basis by the very folks who are supposed to help us manage this life-threatening condition.

In a decent world, the sleep doc would hand the patient a copy of the prescription saying, "You need this for your records even thou we're faxing it to the DME."

In a decent world, a newly diagnosed OSA patient would not have to fight the DME and the doc in order to obtain a full efficacy data machine when their insurance company pays by billing code.

In a decent world, an OSA patient would receive a clear answer (in writing) about their benefits after the first call to the insurance company; in my case I *and my DME* spent close to three months of phone tag trying to wring out just what the replacement schedule for my equipment is. During that time I and the DME received multiple conflicting answers to the basic question: When am I entitled to get a replacement set of nasal pillows with insurance coverage? And no-one either of us talked to at the insurance company was willing to put anything about the replacement schedule in writing.

The sad fact of the matter is: The average newly diagnosed OSA patient gets shafted by the sleep medicine industrial complex repeatedly and systematically from the time they are diagnosed. And this shamelessly exploitative treatment at the hands of those who are supposed to help manage our OSA via CPAP is indeed a major contributor to that oft cited and alarming figure that 50% of those who start CPAP are not using it one year later.

[DiverCTHunter]

Under current patient/doctor law, we already have those rights. One may need to make the doctor's employees aware of it but your prescription is yours as part of your medical records. It won't be offered but ask. If you are refused, then cite ERISA rules.

Sorry to be a stickler, but the right to your records is covered under HIPAA rules. ERISA only covers Medicare / Social Security patients.

I'd add that there needs to be a universal written HIPAA records request form.

[asleep@thewheel]

Let's try for the KEEP IT SIMPLE method.

Straight , to the point , clear, concise, informative, and beneficial to all.

[action012]

Totally agree with a reasonable priced battery backup. IT IS A SAFETY ISSUE. As I understand even the battery for the S9 is not automatic...if you lose power you have to get up and attach the machine to the battery backup. I am nervous about losing power. I know that there are air holes in the masks, but a lot of the masks have warnings about suffication if worn without the machine. Or can the machine at least have a warning bell if power is interrupted. I know people on the forum have made their own battery backups...but i'm not that clever. I mean really, even my $10 alarm clock has a battery backup and the alarm clock has a lesser chance of saving my life.

I've been giving this battery backup some thought couldn't you just use a Computer UPS (Uninterruptible Power Supply/Battery Backup unit). I know you can get small ones for about $40. online. Going this way you wouldn't need to buy a new battery pack if you changed machines.

I could be totally of base as I don't even have my first machine yet so maybe the power consumption would be to much for a small UPS?

Sorry for getting off topic after reading that battery backups are over priced I just thought this might be a better solution.

Steve

[bansko]

I am a newly diagnosed sleep apnea patient and have been on the machine for about a month now. The things I have been through are reason enough to warrant a sleep apnea patient bill of rights. I took a home sleep test and received a telephone call from the doctor's office a few weeks later that I had severe sleep apnea and that I should contact (plug in your local DME supplier) to obtain a CPAP machine. I contacted the DME supplier, provided my insurance information, and received a call a few days later asking me whether I wanted the machine delivered to my home or if I wanted to pick it up. I elected to pick it up.

When I went to pick up the machine I was given a bunch of forms to sign, some informational handouts, and asked whether I was a nose or mouth breather. I told the tech that I was a nose breather and she proceeded to hand me a nose mask and fitted it by pulling on the velcro straps and asking me if it was snug. That's it. I later found out that the mask came in different sizes, that there was a sizing template the tech could have used, and that the incredible soreness on my nose bridge could have been avoided. The tech also told me that my insurance company would be renting the machine for 12 months and after that I would own it. She provided some basic information about cleaning the machine/mask and sent me on my way. Before sending me out the door though, she gave me a stern warning that I had to use the machine every day and to be sure to make a doctor's appointment within 30-90 days from that point to confirm that the machine was working for me. Apparently, the insurance requires that. Before the future doctor's appointment she told me to bring the SD card so she could print out a report verifying my compliance.

I'm an easy going guy, but I was absolutely not happy with the way everything went down. I was never provided a copy of my sleep study report, nor were the significance of the various findings explained to me. No one explained CPAP, APAP, pressure settings, RDI, or any of that to me. I have since become my own medical advocate, out of necessity. I downloaded Sleepyhead so I could check my status on a daily basis. It was then that I discovered that someone else's data was still on the SD card from the previous six months. I was never told that I was provided a used machine; I had to find that out on my own. That explains why I never received a user's manual for my machine from the DME supplier. I had to go online and print it off myself. It turns out that the machine they gave me (a Phillips) is an older model that is out of production.

I'm going to turn the machine back to the DME supplier shortly and purchase one online. With the co-pay I'll be charged for 12 months of outrageously inflated rental costs on an outdated, used machine, I can buy a new one.

I'm a little older and a lot wiser now. Yes, I think we need something along the lines of a sleep apnea patient bill of rights.

I thank this forum for helping to educate a lost newbie.

[asleep@thewheel]

Thank you first time poster. That's exactly why we have set off on this course. You deserve a big pat on the back for coming so far in such a short amount of time. Hang in there and keep advocating for yourself. The better the sleep gets the better choices you will make.

Sleep well and sweet dreams.

[chunkyfrog]

Maybe this sounds picky; but feet vary as much as faces;
yet the sizes available in masks is a FRACTION of that for shoes!
Where does it say that 'sort of fits' is close enough?
We need more sizes--half sizes, width, depth variations, etc.
Shoes are much less costly, and they make a dozen sizes --easy!

[asleep@thewheel]

SLEEP APNEA PATIENTS COMES IN ALL SHAPES & SIZES SO SHOULD THE MASKS.

[BostonGal]

I have several nasal pillow masks...though none resemble my narrow nares. Am I the only one in the world with narrow nares?

Bansko - you should see if you are within 30 days to return and demand a new machine. Threaten that you will call the ins company and ask if they are getting billed for a new machine or a used discontinued machine. You will call your doctor and say never refer another patient to that DME. I would raise a ruckus. Write a letter to the AG. No one should expect a used discontinued model as a MEDICAL DEVICE that the ins company is paying for and you won't be able to get a new one for 5ish years. Threaten the DME with fraud. Even if they do fix the situation for you...still write a letter to the AG. Hey, do you have one of those local reporters that like to do consumer reports type segments. Call this one in. If it were me, I could say...do you want me to call Hank Phillipe Ryan? She (yes, she) is a bulldog. That would get them to straighten up and fly right.

Asleep - will there be vendors and suppliers at the convention? Clearly we have 2 threads going...a wish list on products and better treatment from the medical community. Good luck!

[asleep@thewheel]

Yes there will be vendors as many of them are the sponsors.

The product wish list as an addendum makes complete sense as well.

Right now we need to be focused on the quality of care the patient gets as THE PRIORITY from both the medical community and the vendors/suppliers. We have the power in numbers to set the market. They obviously have the keys to the cash draw.

We have been asleep at the wheel for way to long.

We need a clear and concise message demonstrating our right to get the best night of sleep as possible with no handcuffs.

[SleepDepraved2]

Totally agree with a reasonable priced battery backup. IT IS A SAFETY ISSUE. As I understand even the battery for the S9 is not automatic...if you lose power you have to get up and attach the machine to the battery backup. I am nervous about losing power. I know that there are air holes in the masks, but a lot of the masks have warnings about suffication if worn without the machine. Or can the machine at least have a warning bell if power is interrupted. I know people on the forum have made their own battery backups...but i'm not that clever. I mean really, even my $10 alarm clock has a battery backup and the alarm clock has a lesser chance of saving my life.

I've been giving this battery backup some thought couldn't you just use a Computer UPS (Uninterruptible Power Supply/Battery Backup unit). I know you can get small ones for about $40. online. Going this way you wouldn't need to buy a new battery pack if you changed machines.

I could be totally of base as I don't even have my first machine yet so maybe the power consumption would be to much for a small UPS?

Sorry for getting off topic after reading that battery backups are over priced I just thought this might be a better solution.

Steve

A UPS is designed to supply enough power for you to be able to shut your computer system down in a timely way in the event of a power outage. The one I have gives me about 30 to 45 minutes of run time. It's not meant to power your computer for a long time, just enough to be able to safely shut down your system without losing data, frying components from power surges (which is why they have a surge protector built in), etc. What we are talking about is enough power to run your machine in a power outage so that you can safely sleep at night. Some clever folks have figured out how to convert a UPS to have a bigger battery and to allow them to sleep through a power outage, but most of us will have to get up, pull the jump starter, generator, or battery out of wherever we have stored it, set it up, plug in and get back in bed.

First you have to buy a DC convertor for your machine, which can cost $90 to $150. A good jump starter alone costs at least $80 (for the good ones). A generator is much more than that. The battery kit (including DC converter) for my machine costs $700 on our sponsor site here and I have seen it as much as $1500 elsewhere. For people on a low income, even $160 for the converter and a jump starter can be difficult to come up with. This is not something that is covered by insurance.

[robysue]

Under current patient/doctor law, we already have those rights. One may need to make the doctor's employees aware of it but your prescription is yours as part of your medical records. It won't be offered but ask. If you are refused, then cite ERISA rules.

Sorry to be a stickler, but the right to your records is covered under HIPAA rules. ERISA only covers Medicare / Social Security patients.

I'd add that there needs to be a universal written HIPAA records request form.

And I'm sorry to be a sticker too

But I didn't write the above quote; I was quoting motherall in this response back on page three of this thread.

[archangle]

First you have to buy a DC convertor for your machine, which can cost $90 to $150.

ResMed requires a DC converter. Philips Respironics doesn't, although they charge way too much for the DC cords needed.

I agree that the battery backup system is a mess. Overly expensive, unreliable, and confusing to the patient.