Join Our Newsletter

New? Free Sign Up

Then check our Welcome Center to a Community Caring about Sleep Apnea diagnosis and Sleep Apnea treatment:

CPAP machines, Sleep Apnea surgery and dental appliances.

CPAP Supplies

Latest Activity

Steven B. Ronsen updated their profile
Mar 5
Dan Lyons updated their profile
Mar 7, 2022
99 replied to Mike's discussion SPO 7500 Users?
"please keep me updated about oximeters "
Dec 4, 2021
Stefan updated their profile
Sep 16, 2019
Profile IconBLev and bruce david joined SleepGuide
Aug 21, 2019
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

Reply to This

Replies to This Discussion

bump.  c'mon, you know you have a wish list for what an ideal OSA Advocacy Group would accomplish.  Let's hear it!

I would like to see someone enforce the rules

 

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?

 

Gerald -- great answer.  I truly wonder how representative of the patient population at large you are.  I certainly share your concerns.  Always thought I was an outlier on this stuff.

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?

 

set yourself up as an examunaeion body

and get onto as many boards as possible as an consultant

what should and should not be included and also best practice

 

We don't need some kind of central authority to make and enforce rules. We know what associations quickly become - they start to exist for the association staff and do little to help individual patients. We had this discussion about associations in this thread: http://www.sleepguide.com/forum/topics/american-heart-association?c...  and it was not a pleasant discussion.

 

Get a strong association and the first thing that happens is some people will want to tell the patients how to do things, and drive up salaries and benefits of the association staff and their cronies in the sleep business.

 

A strong association is what we should not have. Now I will tell you my opinion of what we should do in just four points.

 

First and most important is individual effort in speaking out to family, friends, and associates about sleep apnea. Bring the awareness level up on an individual basis. For example, change the perception of "snoring as comedy" to a perception of snoring as symptom of a devastating health condition. Another example, tell that coworker who has bags under the eyes and is always complaining about awakening at 3:00 a.m. and not being able to go back to sleep that he is allowing his life to be destroyed and needs to visit a sleep doc right away.

 

My third point is educate yourself continuously and stay involved in patient forums (not ones dominated by sleep professionals) and recruit other patient participants. Make your voice heard through these forums.

 

Now on to the fourth point. Gerald Donoghue makes an excellent point: "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."

 

The sleep business is in need of deregulation just like many other industries in this country. CPAPs should be deregulated and the prescription requirement dropped. How to do this? We are a small patient group and will not fare well against the FDA and Washington in general. So get involved with national and local libertarian organizations ( http://www.google.com/search?q=libertarian+organizations&ie=utf... ) and make them aware of the issues. You will find out that there are already a lot of patients (and undiagnosed sufferers) in these organizations who will be eager to get the issues on their agenda.

 

 

 

 

Would being able to buy the supplies at places like Walmart be safe? I mean..are you talking about being able to buy the machine there or just all the other little necessities like hoses , filters. etc. Would it be dangerous if anyone could go in and buy a machine and go home and set it up to whatever they were told it was to be set to or set it up based on no knowledge....would making the equipment available to buy by anyone bring people out of the woodwork who would buy it and experiment with it or cause harm to someone unknowingly? I can see the need for professional help in this aspect. OR does the machine come w/ enough simple instructions anyone can set it up? Without a sleep study to determine WHAT your settings should be..do you see what I am asking? I hope this is not a dumb reply on my part.. I honestly would LOVE To be able to go down to my local Walmart and buy hoses, masks, filters..etc..and I would be willing to bet they would be more competitively priced.

 

As for the group I agree with advertising ... showing someone snoring..and people laughing about it..and then seriously showing what is actually happening to this poor person.. get help for your loved ones.. your friends..etc.  I am way down on the totem pole of having access to anyone or anything to help me  at this point in time in my life..so perhaps ways to get to those of us who don't have the convenience of wonderful insurance an organization that would help to diagnose and steer less fortunate people to the right doors to go through for immediate help with sleep apnea. This organization should put out a major push to educate the public...take something that has been swept under the rug.. or " oh well.. he has always   snored like that "..and turn it into what it is... A Life Threatening Situation..

Rooster said:

 

We don't need some kind of central authority to make and enforce rules. We know what associations quickly become - they start to exist for the association staff and do little to help individual patients. We had this discussion about associations in this thread: http://www.sleepguide.com/forum/topics/american-heart-association?c...  and it was not a pleasant discussion.

 

Get a strong association and the first thing that happens is some people will want to tell the patients how to do things, and drive up salaries and benefits of the association staff and their cronies in the sleep business.

 

A strong association is what we should not have. Now I will tell you my opinion of what we should do in just four points.

 

First and most important is individual effort in speaking out to family, friends, and associates about sleep apnea. Bring the awareness level up on an individual basis. For example, change the perception of "snoring as comedy" to a perception of snoring as symptom of a devastating health condition. Another example, tell that coworker who has bags under the eyes and is always complaining about awakening at 3:00 a.m. and not being able to go back to sleep that he is allowing his life to be destroyed and needs to visit a sleep doc right away.

 

My third point is educate yourself continuously and stay involved in patient forums (not ones dominated by sleep professionals) and recruit other patient participants. Make your voice heard through these forums.

 

Now on to the fourth point. Gerald Donoghue makes an excellent point: "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."

 

The sleep business is in need of deregulation just like many other industries in this country. CPAPs should be deregulated and the prescription requirement dropped. How to do this? We are a small patient group and will not fare well against the FDA and Washington in general. So get involved with national and local libertarian organizations ( http://www.google.com/search?q=libertarian+organizations&ie=utf... ) and make them aware of the issues. You will find out that there are already a lot of patients (and undiagnosed sufferers) in these organizations who will be eager to get the issues on their agenda.

 

 

 

 

Sheila Knowles: I honestly would LOVE To be able to go down to my local Walmart and buy hoses, masks, filters..etc..and I would be willing to bet they would be more competitively priced.

Welcome aboard the deregulation train Sheila! I could not agree more with your statement.

 

BTW, do you know that WalMart sells knives, chain saws, axes, hatchets, guns, insecticides, tree pruners, ladders, and ammunition? Do you think these should only be sold through DMEs so people will not hurt themselves?

Thank you .. I stand corrected. 

Rooster said:

Sheila Knowles: I honestly would LOVE To be able to go down to my local Walmart and buy hoses, masks, filters..etc..and I would be willing to bet they would be more competitively priced.

Welcome aboard the deregulation train Sheila! I could not agree more with your statement.

 

BTW, do you know that WalMart sells knives, chain saws, axes, hatchets, guns, insecticides, tree pruners, ladders, and ammunition? Do you think these should only be sold through DMEs so people will not hurt themselves?

SLEEPGUIDE is an advocatory group and is quite capable in lobbying

Ok.  I must apologize then for my statements..I remember being fitted and the gal who helped me get set up to use my cpap machine and mask for the very first time.  It was very frightening to me..and until the pressures were adjusted to where I was comfortable with them..it felt like either a hurricane in my mouth or took my breath away. I must be the only person who was affected like this.

 

I still think it should be available w/out an rx....I was just remembering how I felt when I was first set up with it..and it was very unnerving for me. I didn't ever worry for a second I would get high or anything like that.. just took all my air away..and scared me.

I completely agree that sleep apnea sufferer's need to speak up and voice their experiences with family, friends, political lobbyists and coworkers to increase the level of general awareness about sleep apnea and sleep disorders. However, removing the prescription requirement associated with PAP therapy is an unlikely and a potentially harmful option. PAP therapy settings are specific to the individual and adjusted with care and with negative outcomes if done incorrectly. This is why it is regulated as any medication dose with a tailored prescription. Set too low, you do not correct the sleep apnea and  with ongoing stress on all body systems and eventually a patient who discontinues PAP use because they are not noticing a difference/feeling any better. Set too high, you alter the respiratory drive by lowering the CO2 levels too much and causing central sleep apnea.

 

Patient's and sleep professionals need to work and lobby together. We need to work to make the consult/testing/treatment processes more convenient and comfortable for the patient. We need to work to make mask fitting and trials specific to the patient and accessibility to supplies at DME companies more readily available and within reasonable financial means. If you are not getting that kind of service and care, you are at the wrong place and need to take your business elsewhere. 

 

Healthcare is a business and the professionals in that business are working for you. Hold them accountable to that by refusing to spend your money and insurance reimbursements at their establishment if they do not provide the customer services you deserve. 

Reply to Discussion

RSS

© 2024   Created by The SleepGuide Crew.   Powered by

Badges  |  Report an Issue  |  Terms of Service