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Ideal Patient Advocacy /Lobbying Group
I know we have the American Sleep Apnea Association, and believe me, they have a hard job and have done a lot of good on behalf of Sleep Apnea patients. What I'd like to know is, irrespective of what the American Sleep Apnea Association is doing for patients, what should a patient advocacy/ lobbying group do on our behalf?
Views: 385
Replies to This Discussion
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Permalink Reply by Kristina Zabala on
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Gerald Donoghue said:
I would like to see a lobbying group:
1. Put out more information to the general public. I never really knew anything about sleep apnea before I was diagnosed. I later found out that at least three people in my office of thirty also have it, and I suspect at least one other ones does. However, non of them ever mentioned it until I brought my machine in one day becausee I was traveling. I still had to explain what it is to my other co-workers. Because we travel a lot and may need to know each others medical information; most of the people in my office know who has diabetes, high blood pressure, and who's allergic to what, but no one ever mentioned apnea. It is almost like an underground society.
2. Push to make multiple sources of equipment available. My DME is quite a distance from me and they don't seem that customer friendly. I know there are internet sources for these things, but it seems like prices would be more competitive and things would be more convenient if there was an option to purchase CPAP equipment at places like Best Buy and Wal-Mart also.
Rock, which rules are you talking about?
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Gerald,
If you could buy CPAP machines at the grocery store, how would you know how high to set it?
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Permalink Reply by Gerald Donoghue on
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I am not saying cut out the medical professionals. In my case, I consulted my regular doctor who referred me to a sleep specialist. After my appointment with her, I had a sleep study and was prescribed CPAP. My doctor explained how the machine worked and my options for masks. I go in for regular check ups or if I have any problems. This process would stay the same. I am talking about access to the equipment.
If my doctor said I need to set my pressure at 12, I would like to be able to go to Wal-Mart, buy a machine and set it at 12. I would still take my results to the doctor, discuss them, and make any adjustments she recommended.
As far as setting my pressures too high or low, when I get a regular prescription (or even an OTC drug) from the drug store I get a bottle of say 10 pills and there is a dose I am told to use. I could take three pills instead of one, but they trust me to follow directions. Why should it be different with CPAP? As someone else said, I don't think anyone is going to try it if they don't need it. It is hard enough to get the apnea sufferers to use them.
I would like more outlets for the equipment because I think competition lowers the cost. For example, I recently bought a DVD player for $20. Similar models were available at several stores for about the same price, so I had options. Years ago they were hundreds of dollars. If they were regulated like CPAP machines are, they would cost much more. I think more companies would make machines because of the greater outlet. They in turn would diseminate information on the dangers of sleep apnea and its treatment in order to sell their products.
I have only been on CPAP for about nine months and would not feel comfortable changing the settings on my own, but I do feel comfortable discussing it with my doctor. Others here have much more experience. They understand their data. I think many of them probably know what they need to do.
Kristina Zabala said:Gerald,
If you could buy CPAP machines at the grocery store, how would you know how high to set it?
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lobby to make patient access to nightly information a requirement. better training requirement for dme's or even better yet insurance lobbying to get rid of the middle man.
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The most important item, in my opinion, is regulation of sleep centers. Doctors and clinicians should not only have the required training but must have a set of rules on what information they give a patient. An example would be the patient receiving a copy of their prescription and results of the sleep study immediately. Additionally, adjustments to the CPAP machine should be an ongoing requirement. Also, DME's need to be audited to see if they are treating each patient the same way. I have yet to have a mask fitted to me correctly and not one measurement has been made; it has always been a guess.
From reading forums such as this one, it is obvious that for years patients have not received usable information and there is a question as to whether their machines are set correctly. In my situation, my sleep doctor has been "shooting in the dark" for two years now making adjustments to my machine without full explanation to me as to why. I am sick and tired of having to ask so many questions and not getting answers.
YES, regulation, regulation, regulation.
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OR ....like it my situation , which I am quite sure is way different than most.... I was completely in the dark about CPAP machines..what they look like..how they work...etc. NO DOCTOR talked to me after my sleep test.. I was just given a copy of the results and they were not discussed with me . I was told that a company would be supplying me with a CPAP machine and they would come to my house to set it up and explain it to me. When I got my machine.. it was a plain Jane simple little machine with a heater/humidifier on it. I was never shown HOW to work it .. it was set up FOR me..and it was totally incapable of recording any kind of data. Later after I joined this group and started reading what everyone was talking about I became aware that there were machines that actually recorded the events during the night while you slept. As I said in another discussion.. when I questioned the owner about WHY I had the kind of CPAP they set me up with they told me that the only reason the data machines were necessary was so they could make sure patients were actually using the machine. ( I cringe again..being reminded of that day).. I am STILL stuck with this same machine..tho' I must say.. it works fine.. the settings ~ seem~ to be fine. I have been on this CPAP machine for about 3 yrs now..never having talked to or seen a DR at all of any kind since the sleep study test. SOooooooo perhaps when Publishers Clearing House comes to my house and drops all that money on me.. I will scramble as fast as I humanly can DOWN to wherever a sleep Dr is in my town..and demand a new sleep test.. and demand a new CPAP machine capable of monitoring my every moment while I am asleep..in the mean time you can see that NOT everyone who is using their CPAP faithfully has the SAME access to the SAME privileges and perks and that as was just suggested.. it should be Made mandatory for sleep apnea patients to be able to be treated the same and not discriminated against based on insurance providers or medical suppliers.
I would kill to be able to go down to my local Walmart and buy a newer updated version and set it up.. even if it is simply set up to the same settings I have been going by all this time.. I would love to be able to have access to Sleep doctors who would help me even if I am NOT the richest person in the world.. simply because I have a medical problem and I deserve it.
I think my response is just to point out that a LOT of people are in the....boat ...that discussions about monitoring your machines.. seeing doctors on a regular basis.. being rechecked....and then there are the rest of us that are just learning.. hanging onto the edge of our seats.. listening to what it is suppose to be like and planning for the day when we can fit right into this discussion. I hope for a day when it might be mandatory for the care for sleep apnea to be equal up and down the line..advertisements that push the severity of sleep apnea right up there with the wasted out lungs from smoking..and everyone has the chance to learn about it...get treated for it..and understand it.
Charles McDermott said:
The most important item, in my opinion, is regulation of sleep centers. Doctors and clinicians should not only have the required training but must have a set of rules on what information they give a patient. An example would be the patient receiving a copy of their prescription and results of the sleep study immediately. Additionally, adjustments to the CPAP machine should be an ongoing requirement. Also, DME's need to be audited to see if they are treating each patient the same way. I have yet to have a mask fitted to me correctly and not one measurement has been made; it has always been a guess.
From reading forums such as this one, it is obvious that for years patients have not received usable information and there is a question as to whether their machines are set correctly. In my situation, my sleep doctor has been "shooting in the dark" for two years now making adjustments to my machine without full explanation to me as to why. I am sick and tired of having to ask so many questions and not getting answers.
YES, regulation, regulation, regulation.
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Permalink Reply by Rooster on
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Charles McDermott said:
The most important item, in my opinion, is regulation of sleep centers. Doctors and clinicians should not only have the required training but must have a set of rules on what information they give a patient. An example would be the patient receiving a copy of their prescription and results of the sleep study immediately. Additionally, adjustments to the CPAP machine should be an ongoing requirement. Also, DME's need to be audited to see if they are treating each patient the same way. I have yet to have a mask fitted to me correctly and not one measurement has been made; it has always been a guess.
From reading forums such as this one, it is obvious that for years patients have not received usable information and there is a question as to whether their machines are set correctly. In my situation, my sleep doctor has been "shooting in the dark" for two years now making adjustments to my machine without full explanation to me as to why. I am sick and tired of having to ask so many questions and not getting answers.
YES, regulation, regulation, regulation.
Holy peepers Batman, how about for once looking around you at all the industries that are heavily regulated, regulated, regulated, and then look at how unhappy the customer of those industries are, and how poor the quality and customer service are, and how high the costs are.
Then look at industries that are lightly regulated and see happy customers, high quality, innovative products, and great money value.
Open your eyes to what is going on around you. The CPAP patient is suffering today because of all the heavy regulation in the industry by the FDA.
Wake up.
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Wake UP? Comon Rooster,like I said, you can look on the internet and read the forum on this web site and cpaptalk.com and others and people for years have been posting problems they have with either their treatment, their doctor or something else. Seems that they are relying on people like ourselves to get answers. What do we REALLY know except what we have experienced not learned through studying.
We have paid good money for a sleep study. The clinicians who conducted it, the sleep doctors responsible for giving out the prescription and he useless DME's should be held responsible and the only way I know is to impose rules and regulations on them and that is what you call being regulated.
By the way, don't use the word lobby. I have yet to see a lobby group that is useful.
Rooster said:Charles McDermott said:
The most important item, in my opinion, is regulation of sleep centers. Doctors and clinicians should not only have the required training but must have a set of rules on what information they give a patient. An example would be the patient receiving a copy of their prescription and results of the sleep study immediately. Additionally, adjustments to the CPAP machine should be an ongoing requirement. Also, DME's need to be audited to see if they are treating each patient the same way. I have yet to have a mask fitted to me correctly and not one measurement has been made; it has always been a guess.
From reading forums such as this one, it is obvious that for years patients have not received usable information and there is a question as to whether their machines are set correctly. In my situation, my sleep doctor has been "shooting in the dark" for two years now making adjustments to my machine without full explanation to me as to why. I am sick and tired of having to ask so many questions and not getting answers.
YES, regulation, regulation, regulation.
Holy peepers Batman, how about for once looking around you at all the industries that are heavily regulated, regulated, regulated, and then look at how unhappy the customer of those industries are, and how poor the quality and customer service are, and how high the costs are.
Then look at industries that are lightly regulated and see happy customers, high quality, innovative products, and great money value.
Open your eyes to what is going on around you. The CPAP patient is suffering today because of all the heavy regulation in the industry by the FDA.
Wake up.
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Charles McDermott said, ..... the only way I know is to impose rules and regulations on them and that is what you call being regulated.
Wrong! Where government has placed the heavy hand of regulation we have one disaster after another over the last fifty years.
Where we have left the markets unregulated the suppliers are at the mercy of the customers. The suppliers survive and prosper only when the customer is happy enough with the quality, innovation, and price and voluntarily buys and pays for products/services.
Do I need to take some time in the next few days to put together a list of heavily regulated industries that you will agree provide poor quality products at high prices and lack innovation and a second list of lightly regulated industries that provide quality/innovation/money-value that customers are excited about? Surely you can look around at all your purchases in a month and see what is going on.
The medical industry is a big example with everything heavily regulated from health insurance to medicines to doctors to DMEs. Why do you think CPAPer rail about how sorry DMEs are? It is because the focus of DMEs is on licensing and regulation - if they did not have this focus they would not survive. In the meantime the patient (customer) suffers and has few options (although the internet helps).
Regulation restrains an industry from reaching its full potential.
You already have laws on the book for centuries to protect you from fraud, misrepresentation, and failure to deliver a product or service that meets the use for which it was intended.You need no more regulation. If your sleep study did not titrate you properly, ask for your money back. It they refuse take them to small claims court.
Do you know how many billions of dollars of fraud is visited upon Medicare/Medicaid each year? The Federal government can't keep people from stealing money from these programs. They sure as hell can't keep people from stealing money from us.
But a free market can. It gives us the choices and we only make voluntary transactions.
A good example is veterinary medicine which is less regulated and has no government program (like Medicare) paying and medical insurance for your horse is not regulated. The vets have the latest equipment, respond quickly, will see your animal 24 x 7 for emergencies, and keep their customers very happy. How can you explain this contrasted to medicine for humans where we are not happy? It is the free market and competition being allowed to work without Federal and state governments as payors and without heavy regulation, regulation, regulation.
Yes, wake up and look around at what is going on in front of your eyes.
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Permalink Reply by Nicole Blevens on
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Great Value brand CPAP machines and Wal-Mart availability may sound appealing, but like Communism, it only works on paper (or in this case, vitual posting).
PAP pressure is a highly individualized and customizable therapy. Without understanding a person's comorbidities and type of sleep apnea, you CAN cause harm. At the very least, you'll have a lot more unsatisfied PAP users and "used to be" users.
Cardiac and pulmonary diseases are directly affected by OSA and vise versa. By slapping an APAP (or auto-PAP) on anybody who wants to try it, you will have a lot of people waking up 90 minutes into sleep throwing their mask across the room when they hit their first REM period. The muscles relax, jaw drops, oral leak ensues with the APAP cranking the pressure up "thinking" they are having an apnea and voila - jet engine through the nasal passages = not working.
Higher pressures = less compliance and more arousals during sleep. Arousals from sleep cause a spike in your blood pressure and a shift in your CO2 threshold which changes your respiratory drive = central sleep apnea. A whole other problem and not good medicine any way you look at it.
On the other side, you miss a lot of patient's with COPD, neuromuscular disorders, and cardiac diseases that would benefit from or require BILEVEL, timed backup rates, longer or shorter inhale/exhale cycle periods, pressure relief settings, or ASV for proper ventilation. Opening the airway with PAP is just the beginning of treating the sleep disorder. What most don't realize is that your sleep disorder affects every other body function and malfunction. Your heart, lungs, hormones, memory, mood, sex drive/performance, diabetes, asthma.....all are affected by sleep apnea.
By no means do I think the current system is perfect, but OTC PAP therapy is scary thing if you know anything about the body, respiratory drive, and sleep apnea.
I suppose Rooster and lnk believe that cigarettes are harmless and the cancer claims are all just propoganda the government spews to impose regulations and taxes on our freedoms.
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That is the first time I have been called a cigarette-smoking Communist. LMAO!
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Kristina Zabala said:Gerald,
If you could buy CPAP machines at the grocery store, how would you know how high to set it?
That is a good question Krisitina that I would like to discuss further. Would you mind going first by telling us your ideas on how to set the appropriate pressure on a machine purchased OTC at WalMart?
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