Perscriptions for CPAP Machines?

[GumbyCT]

AutoPAPs work well when used properly. Many autoPAPs are set wide-open -- 4 to 20 cmh2o, which can allow the machine to cause mischief. When set to a small (no more than 4 cmh2o) range, they generally work quite well.

Good point...
so we can conclude that when cpap machines are setup by an "Internet Trained Client" the therapy will more likely be effective when compared to machines setup by licensed DME therapist.

Good Point.

[Gale Hawkins]

Well we need to keep in mind the body of research that gave us the CPAP, etc did not come out of the Big Bang but from labs filled with dedicated professionals working to save lives and to improve the quality of life.

We have tools like CPAP TALK that permits us to discuss our problems and gain workable and affordable solutions. Google helps us find the past research we need to understand sleep apnea and to learn about current research and tools and machines that we need going forward.

I did not research sleep apnea on the web and locate my CPAP machines on E-Bay because I was against any professionals or companies. I was about to go crazy from the lack of quality sleep on top of all the stress of living with Ankylosing Spondylitis, being technically bankrupt due to building a company and trying to be a father to a set of 7 year old twins in August of 2004. My wife was keeping the family together and going forward.

Going down for a sleep study would have been hard. Besides the money and time I was in so much pain from the arthritis I could not sleep but a few hours at the time so any test results would have been clouded was my thought.

Starting with a used complete Remstar setup in a bag would freak out some of the professionals on this forum I am sure but I knew I was about to crash and burn so I grasped at the CPAP straw since many in my family were successfully using CPAP machines to better their lives. Total cost was about $250 then. This week I bought a complete Remstar system in a bag with 2.6 hours of total time for $135 including shipping.

Does the entry requirements need to be lower? That I expect will be debated for many years. I do not see a CPAP machine any more dangerous or a health risk than whiskey or cigarettes. I am sure if a $200 tax was put on each CPAP machine they would be sold in vending machines so the powers to be would have more money to fix life’s problems as they see fit.

Having been using a CPAP now for 4.5 years and not keeping up with the technology I see how much easier it is to intelligently self treat today than five years ago. A topic like this one was banned and if mentioned it would be deleted. Times are changing. Those graduating from college today on average can not to gain the life style of their parents or grandparents could gain from a college degree in their times.

I personally think the bar to jump to get sleep apnea treatment today is dooming the health of many as well of their social lives and the lives of those who they love. How many divorces, jobs lost, car crashes, etc occur due to lack of successful sleep apnea treatment?

It is time to look at how the bar can be lowered safely. Slamming the current professionals in the industry is no place to start even though evidence shows there are may be quality/ethical issues within the industry.

It will take lobbying efforts to get the bar lowered so more have access to sleep apnea treatment. It may lower the excessive profits of some currently controlling the industry. They will fight change. Money will be at the heart of the fight but they will say they are only trying to protect the uninformed from themselves and there could be some facts to support their position.

Bottom line is the home technology today may be more advanced then found in the sleep labs 10 years ago. I had no one to show me how to overcome mask leaking issues. Let’s face it that is not rocket science. There have been a lot of positive ideas offered in this tread.

What mechanism/organization is in place or could be put in place to move this from the idea stage to the concrete action phase?

[Karla1958]

Here is one thing to think about. If you are on Alabama Medicaid and over 21, you can have all the sleep tests if your primary care doctor says that you need them. But if you do have and kind of sleep apnea, Alabama Medicaid won't pay a dime for any kind of CPAP, BiPAP, or VPAP or even oxygen. Not one dime to by any kind of machine even if the Sleep clinic writes you a necessary prescription for the equipment. They will pay for the machine for people under 21 years old, but not for people over 21.

I had all the tests and some of them twice. I have central sleep apnea and idiopathic hypersomnia. In Alabama I'm just sent home with a piece of paper and nothing else and no prospect of ever getting a machine because when you are on Alabama Medicaid you are usually dirt poor and cannot have any savings or own a house or own anything, so you can't even pawn something off to get a machine. Does this sound fair? What is a prescription going to do if there is no coverage for this machine. Why do they even bother paying for the tests? It's a waste of money!
I've been told I need a ResMed VPAP adapt SV and there is no way I can ever afford one. Anyone know of any programs that donate machines to people in need???

[SleepFast]

I would love to know how many reported cases there are of a person being injured by a CPAP machine (other than dropping it on their foot). I'm sure it has happened, but seems like it would be a very rare event. The risk/benefits of lowering the bar way down on getting CPAP treatment is probably off the charts in terms of benefits. As are the risks of alcohol and tobacco. And probably chain saws and bath tubs.

I knew that ebay would not allow CPAP machines to be sold on their site. But I was shocked that now ebay won't allow masks to be auctioned. Masks don't require a prescription from what I am told. Who pressured them to stop these auctions? And I wonder if there is any law about individuals selling a used machine without a prescription. Obviously it happens elsewhere on the Internet.

I went throught all of the hoops and loops it takes to get treatment, even though I was 95% sure I had SA. It took months, lots of personal time, and cost me about $1,000 in copays. By researching (CPAPTALK.COM) and demanding the best equipment, I did get it. Otherwise, I would have recieved a bottom end machine and one mask. I picked up the machine (data capable) and all of the clinical and results menus were locked. Also the machine was set up with the wrong pressure range. Lucky that I already had the clinical manual from this group and could avoid another several hours of wasted time taking the machine back to get reprogramed. And trying to get access to MY results on MY machine.

I just went for my followup with the doc that runs the clinic (big one at a well know hospital). A waste of time, (as was the first visit -- you are a 12 -- I knew that). The doc was not happy when I gave him a printout of my summary statistics on treatment compliance and efficacy. He said it was not enough detail for him, but he never asked for my data card to get the detail he seemed to want. Nor does there seem to be any routine mechanism in this respected sleep clinic for assessing the data from a patient's machine prospectively. But they block the results menus?? He said to come back and see him in a year. I didn't make the appointment and doubt I will.

[Robespierre]

For what it's worth, the manuals for both my humidifier and mask clearly state "In the USA, federal law restricts this device to sale on, or by the order of, a physician." Whoda thunkit?!

Jim

[Gale Hawkins]

For what it's worth, the manuals for both my humidifier and mask clearly state "In the USA, federal law restricts this device to sale on, or by the order of, a physician." Whoda thunkit?!

Jim

That is why those of us who have not had a sleep study have to buy used from private owners like if it was a gun.

[Slinky]

Yup, yup, SleepFast. I recently had a consultation and bi-level titration at a highly respected health clinic and that sleep doctor didn't appreciate receiving any data printouts either. In fact, I sat silenty stewing thru a tirade of how unreliable the data from these fully data capable xPAPs are. He wasn't even truthful in his office notes regarding our consultation - saying that his RT offered several masks to try (he looked at me and suggested ONE and I barely met him as he was in and out like a flash. There was NO discussion between the RT and I as the sleep doctor claimed in his notes, etc., etc., etc. Hell, I would have RATHER talked to the RT than the sleep doctor anyway. Fortunately, I had a good tech at my titration. "We" could have done as well, the RT, sleep tech and I, w/o the sleep doctor - probably better!!!

[Wulfman]

That is why those of us who have not had a sleep study have to buy used from private owners like if it was a gun.

Paraphrasing, here......

When unregistered CPAPs are outlawed, only outlaws with have unregistered CPAPs.

Our health wasn't won with a registered CPAP.

Den (warped sense of humor engaged)

[Gale Hawkins]

Paraphrasing, here......

When unregistered CPAPs are outlawed, only outlaws with have unregistered CPAPs.

Our health wasn't won with a registered CPAP.

Den (warped sense of humor engaged)

We need to find some balance here. Look at all the Rx stuff that you can by OTC today. Did those former RX drugs get safer or the drug companies just want more sales?

[Wulfman]

Paraphrasing, here......

When unregistered CPAPs are outlawed, only outlaws with have unregistered CPAPs.

Our health wasn't won with a registered CPAP.

Den (warped sense of humor engaged)

We need to find some balance here. Look at all the Rx stuff that you can by OTC today. Did those former RX drugs get safer or the drug companies just want more sales?

More money?

I don't know what's all involved in drugs becoming OTC, but there's been a lot of them that made that transition over the years. And, if you can increase sales volume, you can afford to cut prices......which will probably increase profits. The other things are patents that expire and competitors developing something similar or better.

Den

[JoyD.]

by SleepFast on Sat Feb 07, 2009 3:57 pm

It may have been necessary to have an initial full sleep study in the past, but the new auto CPAP machines can probably screen for the great majority of SAs. Shouldn't these be made available to the symptomatic public for initial screening rather than a full blown sleep test? I'm sure their specificity and sensitivity would be great compared to screening mechanisms for many other diseases.

In the November 2007 issue of the very well-respected medical journal, CHEST, Dr. Barbara Phillips of my town's own University of KY College of Medicine writes: "For those with a high probability for obstructive sleep apnea/hypopnea syndrome, initial management with facility-based polysomnography (PSG) does NOT result in better outcomes than an ambulatory approach in terms of diagnosis or CPAP titration. Based on this report* and the burgeoning numbers of patients with suspected sleep apnea, I think it is likely that by the time you read this, the Centers for Medicare and Medicaid Services (CMS) will have endorsed portable monitoring as the primary diagnostic tool for sleep-disordered breathing." NOTE: the report she refers to is an exhaustive review of the clinical utility of portable monitoring by the Agency for Health Quality Research (AHQR).

Dr. Phillips continues . . . "A colleague physician's obstructive sleep apnea was recently diagnosed by his spouse; my colleague asked me whether he should try CPAP, or just purchase a machine, with no interest in undergoing PSG. This patient (and many others I have encountered) made it clear that he would not be making a trip to the sleep laboratory for overnight testing: it's either empiric CPAP or nothing. Considering this, I chose to give him advice about how to go about it because I believe that the routine requirement of PSG prior to safe effective treatment directly opposes a major public health principle. We should remove, not impose, barriers between patients with deadly diseases and safe, effective treatments."

Powerful, huh? Here is the full article: http://www.chestjournal.org/content/132/5/1418.full
Joy

[Gale Hawkins]

Joy thanks for the post and the link. While I do not agree with Obama on many points I do agree there is much more we can do to get health care to those who need it. The other day he was talking streamlining access to health care. This article points out one way.

The home study is a great way for the masses and the more traditional sleep study can be down for those with high risks like CH. I would have preferred something like this vs. just getting a CPAP through E-Bay and working up until I stopped snoring. With as many in my family with sleep apnea and my father dying with it and having a medical background it was not rocket science to know my problem.

The clearing of the mind started very quickly and I 4.5 I have only been without it on one road trip when I forgot to pack it. In fact I keep extra machines and replaced the first one when it died a few weeks ago so as not to decease my number of back up machines. I like one in the house, one in the motor home in the drive and one for car/plane road trips.

Thanks again and it is good to see KY making medical news.

[rested gal]

Joy, thanks so much for the link to Dr. Phillips comments. You found my heroine!!

I had not seen the editorial article you linked to. Another nugget! Thank you!!!!

Ever since another cpaptalk member (Mikesus) found a PowerPoint presentation (linked below) a long time ago, I've admired Dr. Phillips immensely. I've never met her but always appreciate getting to read her sensible words.

Joy, if you ever have a chance to meet Dr. Phillips, please ask for her autograph for me
Seriously!

Link to a Powerpoint presentation by board certified pulmonolgist/sleep doctor (Dr. Barbara Phillips) at a meeting of the American Lung Association of the Central Coast - November 2004:
"Not Every Patient Needs to Go to the Sleep Lab"
http://www.alaccoast.org/pdf/Phillips_0830.pdf

If you want to actually hear Dr. Phillips speaking in a Podcast interview with Sleep magazine about portable home testing, you can find that in a folder on my website:
http://www.tnlc.com/Lara/laura/osa/BarbaraPhillips/

To download the Podcast audio file to your computer and listen to it:

Firefox users:
Rightclick "Podcast_Audio_Sleep" and "Save Link As"

IE users:
Rightclick "Podcast_Audio_Sleep" and "Save Target As"

About her:
Barbara Phillips MD, MSPH, FCCP
_____________________

Everything below is from this link:
http://www.optimaed.com/faculty/phillips.php

Professor of Pulmonary, Sleep and Critical Care Medicine
University of Kentucky College of Medicine
Medical Director
Samaritan Hospital Sleep Center
Lexington, Kentucky

Barbara Phillips, MD is professor of pulmonary and critical care medicine in the Department of Internal Medicine at the University of Kentucky College of Medicine where she directs the sleep clinic and sleep fellowship program. Dr. Phillips also is medical director at Samaritan Hospital Sleep Center in Lexington. She is board certified in internal medicine, pulmonary medicine, critical care medicine, and sleep medicine.

Dr. Phillips received her medical degree and masters in public health from the University of Kentucky, and continued her postdoctoral studies with an internal medicine residency and pulmonary fellowship at the Medical College of Virginia, in Richmond.

Currently, she serves on the executive committee and as a board member for the National Sleep Foundation and the Health and Science Policy Committee of the American College of Chest Physicians, and also as a member of the Sleep Institute of the American College of Chest Physicians. She is the recipient of the Sleep Academic Award from the National Institutes of Health, a former advisory board member for the National Center on Sleep Disorders Research, a former board member of the American Academy of Sleep Medicine, and the past president and member of The American Board of Sleep Medicine.

Dr. Phillips has been a member of the national board of the American Lung Association and the president of the American Lung Association of Kentucky. In 1994, she was awarded an American Heart Association, Kentucky Affiliate Public Service Award, and she was the first chairperson of Tobacco Free Kentuckians, a tri-agency tobacco control coalition.

[Slinky]

U of KY has also provided an Ovarian Cancer Screening research trial since 1987 free to women in the area - and Dr Pavlik even allowed me into the program (I'm in Michigan) when it was discovered that I had a 4 cm simple ovarian cyst I was NOT agreeable to surgery for. "We" have observed it for 7 years now. Once a year at my insurance's expense via pelvic and transvaginal ultrasound and once a year transvaginal ultrasound free of charge at U of KY as part of their Ovarian Cancer Screening trial. I go down once a year in April for the Rolex **** Horse Event at KY Horse Park and the Ovarian Cancer Screening trial. I only miss 1/2 day of the two days of Dressage for the screening and get to enjoy the rest of the 4 day horse events.

[Karla1958]

The only good thing that my sleep clinic did was order an MRI of my head to see if I had MS. The MRI showed that I had an Acoustic Neuroma growing in my brain. Sure they said I had Central sleep apnea and idiopathic hypersomnia, but in 2003 there wasn't any machines made to help with Central sleep apnea so they just ignored that part of my problem and concentrated on the idiopathic hypersomnia. The only thing they could do for the hypersomnia was to prescribe pills. I don't have a very good reaction to any kind of speed. It all just made me feel miserable and manic and by the time the pills kicked in it was time to go to bed. And by then I couldn't sleep at all. I still have the idiopathic hypersomnia and the Central Sleep apnea, but i just recently got a Respironics AutoSV for the CSA, but so far it doesn't seem to do anything for the hypersomnia. It's only been a week, so I shouldn't be judging it. I just know today, after wearing the mask and using the machine for six hours, I fell asleep while drinking my first drink of the morning. I thought that was over. Oh well.

Oh, I forgot what I was going to write. It wasn't this. I have one comment about the prescriptions for the CPAP machines... Why if it is a prescription only item does Alabama Medicaid not pay for the machine? They pay for all the tests, but not one dime for a machine to help fix the apnea. This doesn't make any sense at all. If the machine is prescription only then the insurance companies and medicaid need to pay for the machines for everyone. Now Alabama Medicaid only pays for machines for people under 21. I wonder how many people under 21 actually have sleep apnea?

Here is something to laugh about. After my sleep study, my sleep doctors never said I should come back or call or anything. Isn't that strange? Now they refuse to give me any prescriptions for hypersomnia, even though they didn't think twice about it in 2003, now they won't even prescribe Provigil. Isn't that strange? And they knew I could not afford a CPAP machine. Shouldn't they have, at the very least, made me some sort of follow up appointment? Or do I have to find a new sleep clinic now? They just took all that insurance money for all the tests and left me to figure all this stuff out for myself. Seems like they are ripping off Medicaid! I shouldn't have to have all the tests redone somewhere else the next time I hear about a new therapy. That's what got me to make another appointment with this sleep clinic in 2008. I was surfing the internet and I found a machine that helped central sleep apnea and a new drug they are using to help with idiopathic hypersomnia. It starts with an X, I never can remember it but you take it at night. GHB is another name for it. The sleep clinic didn't even mention it when I was there. I still think I need it.

Sorry about babbling here. I'm half asleep typing and thinking out loud.
Karla