I have been banned from the ASAA Board

[49er]

I have been banned from the ASAA board for violating their guidelines. One of the moderators, Vicki, wanted to know why I wasn't posting my responses publicly so I explained via PM that if I did so, i would violate guidelines. I guess giving people websites in PMs is a violation of their rules.

I know, I should have checked and so forth and so on but I guess I simply got tired of all their BS. It is for the best since I was spending way too much time on the site. But I am very saddened for all the people on that place who won't get the help they need.

I guess my question for ASAA is why do you exist if all you are going to is implement rules that make it impossible to help other people?

Anyway, I thank you all for contributing to making this the great board that it is.

49er

[zoocrewphoto]

I've never posted on that board. Not sure if I have been to that one or not. I do participate on two email lists. One is similar to what you mentioned. I tried to post a link to get a clincian's manual, and I was told my post was deleted because it is not allowed. Anything that can help a person change settings or read data is not allowed. Well dang, how does that help anybody. I never start a topic there as it would be pointless. But I haven't left as I feel like the people there are getting no help. So, I reply privately and invite them to come here.

I am very grateful for the help I have gotten here. I want everybody else to get great help as well. CPAP is so important, yet hard to be successful with the current level of help from doctors and DMEs. We *need* help from people who have been there, done that.

[ddk]

What the hell is an ASAA?

[49er]

I've never posted on that board. Not sure if I have been to that one or not. I do participate on two email lists. One is similar to what you mentioned. I tried to post a link to get a clincian's manual, and I was told my post was deleted because it is not allowed. Anything that can help a person change settings or read data is not allowed. Well dang, how does that help anybody. I never start a topic there as it would be pointless. But I haven't left as I feel like the people there are getting no help. So, I reply privately and invite them to come here.

I am very grateful for the help I have gotten here. I want everybody else to get great help as well. CPAP is so important, yet hard to be successful with the current level of help from doctors and DMEs. We *need* help from people who have been there, done that.

I am on one of those lists as I have seen your name. I have never posted because I remember something about not being allowed to do what you have described.

By the way, I think having a doctor or a staff member you could consult for advice would be ideal. I am not knocking that. But that isn't reality and that is what ASAA doesn't seem to understand. And of course, the folks who don't have insurance would be royally screwed if a board like this didn't exist.

DDK - ASAA stands for the American Sleep Apnea Association.

49er

[mollete]

I have been banned from the ASAA board for violating their guidelines.

Well I cannot be seen in the company of convicted felons!

[mollete]

BTAIM, let me explain all the wonderful things ASAA has done.'

In July 2006, Ed Grandi posted the article "Open Letter to the Sleep Community and Physicians Concerned with Sleep Disordered Breathing" in JCSM:

http://www.aasmnet.org/jcsm/ViewAbstract.aspx?pid=26601

So mollete said "that's a stupid idea":

This is sooooo not a surprise. This was predicted in 2006, and began to come to fruition about 30 months ago when HST began to explode in the NE:

Whatever the intent of "An Open Letter to the Sleep Community and Physicians Concerned With Sleep-Disordered Breathing" was at this point is academic. However, I would find it difficult to believe that no one on that list of signatures was not aware of the possibility, even likelihood, that opening that can of worms would result in the chain of events that would result in disaster for sleep medicine. The very thing that we feared, namely CMS reversing the decision to only allow facility-based testing for polysomnography, is rapidly becoming a likelihood with their reopening of discussion on that issue. Should the portable option be allowed, the unqualified and financially-driven leeches will enter the field en masse at light speed, a return to the early 90s, only far worse.

Will CMS attach stipulations to control the proliferation of unqualified portable testing, technicians and physicians? Or be able to police that? Or insure that the existing "qualified and capable" centers will be able to continue to survive? Should they collapse, the deterioration of the field would then proceed at an exponential rate as the leeches slither in to fill the void.

If CMS changes its stance, will the precedent be set that all the other insurers will accept sub-standard testing? And sign contracts with the lowest bidder (think "Apria" Sleep Testing Services of America)? Do you think that the insurers are concerned with quality?

Regardless of intent, should these things come to pass, then the responsibility will fall squarely on the shoulders of everyone who signed that letter. Throwing a ping pong ball into a room full of mouse traps loaded with ping pong balls and hoping for the best was not the way to go about doing this.

So now Ed says:

The second assault on the field and one that goes further to exacerbate the schism that exists between the prescribers of therapy and the dispensers of therapy is the movement by health insurance companies towards almost exclusively requiring the use of "out of center testing" (HST) for the diagnosis of OSA and APAP for titration. Missing from this equation is the sleep medicine specialist. It also creates additional opportunities for the undiagnosed apnea patient to get lost between needing a test, getting a test and getting treatment.

http://respiratory-care-sleep-medicine. ... pdate.aspx

So it's getting to be that the only way CPAP users can get machines is mail order warehouse because DMEs are ceasing to provide CPAP:

The most recent assault on how business is done is the reimbursement rate for positive airway pressure (PAP) equipment under Round Two of competitive bidding. The figure agreed to is 47% lower than the previous amount. This is likely to mean a further shrinking of the number of Durable Medical Equipment providers available to dispense devices and resupply patients with masks. The companies that remain will have such small margins, they will be limited in their ability to provide follow-up care as contemplated by Medicare. Added to this are new requirements for DMEs in order for them to furnish supplies to existing patients.

So now CPAP compliance is 20% and mollete says:

What a BF surprise.

[49er]

Hi Mollete,

Well I cannot be seen in the company of convicted felons!

Changing gears, regarding the points below, forgive me if I ask what seems like dumb questions. Am I inferring correctly that you feel things got out of control in the sleep medicine industry once HST started being reimbursed? If I am right, how do you know this wouldn't have happened since it seems many sleep doctors see sleep medicine as an easy way to earn money and would have set up their own sleep centers for people to come to. Just so you know, I am not asking these questions to challenge you but because I really do want to understand your points.

Here is what I found ironic in reading the articles. Ed Grandi seemed to be saying that it was important to loosen the rules so that as many people as possible would have access to treatment. But yet, someone could make the argument as you seem to be doing that without adequate supervision, that the negatives would outweigh the benefits which ironically ASAA argues regarding self treatment. I mean if he had this attitude about HST, why not instead of hating self treatment, come up with a policy that recognizes that it is a reality but at the same time, help patients find providers who could work with them to get optimal treatment so that people get the the supervision that they feel is needed?

Regarding the article at this link, http://respiratory-care-sleep-medicine. ... pdate.aspx, I was totally confused as to what Ed's point was. To me, he was speaking in generalities that I couldn't relate to as far as being someone who is uninsured who so far has had a bad experience with two sleep doctors. Perhaps I am missing something.

49er

BTAIM, let me explain all the wonderful things ASAA has done.'

In July 2006, Ed Grandi posted the article "Open Letter to the Sleep Community and Physicians Concerned with Sleep Disordered Breathing" in JCSM:

http://www.aasmnet.org/jcsm/ViewAbstract.aspx?pid=26601

So mollete said "that's a stupid idea":

This is sooooo not a surprise. This was predicted in 2006, and began to come to fruition about 30 months ago when HST began to explode in the NE:

Whatever the intent of "An Open Letter to the Sleep Community and Physicians Concerned With Sleep-Disordered Breathing" was at this point is academic. However, I would find it difficult to believe that no one on that list of signatures was not aware of the possibility, even likelihood, that opening that can of worms would result in the chain of events that would result in disaster for sleep medicine. The very thing that we feared, namely CMS reversing the decision to only allow facility-based testing for polysomnography, is rapidly becoming a likelihood with their reopening of discussion on that issue. Should the portable option be allowed, the unqualified and financially-driven leeches will enter the field en masse at light speed, a return to the early 90s, only far worse.

Will CMS attach stipulations to control the proliferation of unqualified portable testing, technicians and physicians? Or be able to police that? Or insure that the existing "qualified and capable" centers will be able to continue to survive? Should they collapse, the deterioration of the field would then proceed at an exponential rate as the leeches slither in to fill the void.

If CMS changes its stance, will the precedent be set that all the other insurers will accept sub-standard testing? And sign contracts with the lowest bidder (think "Apria" Sleep Testing Services of America)? Do you think that the insurers are concerned with quality?

Regardless of intent, should these things come to pass, then the responsibility will fall squarely on the shoulders of everyone who signed that letter. Throwing a ping pong ball into a room full of mouse traps loaded with ping pong balls and hoping for the best was not the way to go about doing this.

So now Ed says:

The second assault on the field and one that goes further to exacerbate the schism that exists between the prescribers of therapy and the dispensers of therapy is the movement by health insurance companies towards almost exclusively requiring the use of "out of center testing" (HST) for the diagnosis of OSA and APAP for titration. Missing from this equation is the sleep medicine specialist. It also creates additional opportunities for the undiagnosed apnea patient to get lost between needing a test, getting a test and getting treatment.

http://respiratory-care-sleep-medicine. ... pdate.aspx

So it's getting to be that the only way CPAP users can get machines is mail order warehouse because DMEs are ceasing to provide CPAP:

The most recent assault on how business is done is the reimbursement rate for positive airway pressure (PAP) equipment under Round Two of competitive bidding. The figure agreed to is 47% lower than the previous amount. This is likely to mean a further shrinking of the number of Durable Medical Equipment providers available to dispense devices and resupply patients with masks. The companies that remain will have such small margins, they will be limited in their ability to provide follow-up care as contemplated by Medicare. Added to this are new requirements for DMEs in order for them to furnish supplies to existing patients.

So now CPAP compliance is 20% and mollete says:

What a BF surprise.

Hi Molle

[birdwatcher]

I just want to say I am new to both Forums and I saw almost immediately the difference...this one posts links which of course is more helpful. I followed the advice and downloaded software to read my data card I also discussed with my doctor what I am doing. She said she "prefers" an educated patient and was very agreeable to me using the software and bringing in the reports to discuss. Something is wrong with ASAA if they want to be so overly protective.( I couldn't follow the rest of the discussion because of the use of abbreviations...and it doesn't seem to relate to the issue of sharing links.)

[mollete]

But yet, someone could make the argument as you seem to be doing that without adequate supervision, that the negatives would outweigh the benefits which ironically ASAA argues regarding self treatment. I mean if he had this attitude about HST, why not instead of hating self treatment, come up with a policy that recognizes that it is a reality but at the same time, help patients find providers who could work with them to get optimal treatment so that people get the the supervision that they feel is needed?

I gave them one:

Oddly, I haven't noticed that this issue has gotten a lot of attention. When I ask other members in the sleep field about the current controversy in portable testing, they ask, "What controversy is that?"

Portable testing would undoubtedly have been on the AASM agenda anyway, but the one other editorial (at least that I have seen) in re: this issue was in Focus Magazine. Three important points were made:

Many sleep labs don’t open for clinical business until night testing begins so the availability of technical and clinical personnel accessible by patients with problems falls on primary care doctors or medical equipment dealers with poor to non-existent results. This in turn is related to the bottom line since there is no means to pay for or reimburse outpatient technical follow-up. The creation of Certified PAP Coaches or PAP Trainers whose services will be reimbursed or otherwise funded can go a long way to solving the compliance problem but surprisingly no one has suggested this.

The risk to home testing besides it lack of specificity is that it removes the patient from the patient and creates an unintended barrier to determining and addressing patient follow-up and compliance problems. And that makes limited channel home testing just slightly better than nothing and then for only some patients: the perfect, highly aware, well educated in sleep problems, and the highly compliant ones who love what we are trying to do for them. We need to bring the rest of our patients closer, not cast them farther away.

The other risk to portable testing is that it will, like it or not, greatly increase the number of solo polysomnographers with home testing equipment in the trunks of their cars who will test anybody, anywhere for a low cost that doesn’t include the cost of reliable and professional interpretation, professional follow-up and the (currently) non-reimbursed follow-care demanded of the patient advocate group. The problem cases for follow-up will fall on the facility based labs that will be deprived of testing income and these too would then fail causing the demands of the patient advocates to fall on no ears at all... because they just won’t be there anymore.

If I chose to live in a vaccuum, the last point wouldn't really bother me. In some cases, like when a hospital truly has the needs of the community at heart, they provide the service regardless of profit or loss. Prices are simply adjusted (within reason) to stay solvent. Unfortunately, that won't be the case with many other hospitals, or certainly independent free-standing facilities.

In re: the other two points, we really need to have "outside the box" thinking.

A huge problem in patient compliance with pressure therapy is the reimbursement scheme. DMEs (or for that matter, internet providers, pharmacies, etc.) are given a single payment for machines. The CPAP companies have based their pricing according to this schedule, so that machine prices are simply what the market will bear, leaving no room for DMEs to be able to afford to provide follow-up. The DMEs, in turn, use this rationale even when, in individual cases, they could afford follow-up (as it rentals). It doesn't matter who is right, changing this method of reimbursement would fix this issue. There should be one price for equipment, based on FMV (you tell me if an AdaptSV is worth $8000). But, boy, we know who will hate this idea. A CPAP machine with all the creature comforts for $79.99? It can happen if you want it to happen.

Then a second charge would be for follow-up visits, this could be a floating number, say like 3 to 6, based on documented patient needs.

The CPAP companies would hate this because they would lose profit margin, the insurance companies would hate this because they would have to process more claims for the same amount of reimbursement, and the DMEs would hate this because they would have to provide more service for the same amount of money. Since everybody is equally angry, it must be a great plan. Oh, yeah, there is a group who would benefit significantly.

The Letter to the AASM by the political action group ASAA has either largely been ignored or has only served to create a greater rift within the sleep community rather than solve any problems (to say that the response of the AASM was contentious is putting it mildly). We already know what the problems are, what we need are more solutions. For that matter, we already know what the solutions are as well.

Until the issue of compliance is addressed, no attempt to change the status quo should be undertaken.

And as I see at least part of the issue, it will be whether the CPAP companies want to sell 10 million CPAPs at $400 apiece, or 40 million CPAPs at $100 apiece.

Lets see if one can truly serve two masters.

[49er]

Birdwatcher - Glad your MD doesn't mind an educated patient. ASAA stands for American Sleep Apnea Association.

Mollete, thanks for your response. Too much for me to digest right now but I loved your point about how Certified PAP Coaches or PAP Trainers are so badly needed.

And yes, we definitely need outside the box thinking. No question about it.

49er

[luke1985]

Someone from ASAA board sent me PM to join this site. I love this site it is a lot more helpful and I feel I gain alot more information on my disease. Please keep this site going. This will be the only site I will be using. Plus seeing links, that is an bonus for a lot more information.

[oak]

Welcome to the club of us banned from ASAA for trying to help others.

[BlackSpinner]

I gave them one:

The creation of Certified PAP Coaches or PAP Trainers whose services will be reimbursed or otherwise funded can go a long way to solving the compliance problem but surprisingly no one has suggested this.

Yes there should be 2 billing codes - one for the machine and one for training/coaching. And a percentage of reimbursement of the coaching should be dependent on compliance.

ETA: Machines should be purchasable from any supplier, just like drugs. Coaching / training from certified trainers could be the way it is now ( which is a silly way to do healthcare form a universal health care point of view but, hey, your are stuck with it)

[oak]

well my DME DID bill separately for coaching/setting me up (under private insurance). However 1) she was not certified as a Respiratory Tech OR Respiratory Therapist and 2) she did nothing.

so having the codes there still does not address the QUALITY of service in this field. (which sucks)

[ems]

49er... consider yourself in good company. Definitely reminds me of another "board". You haven't lost anything. Ha... maybe the same people are moderating both boards.