CPAPtalk.com

They could use CPT Code 94762 for the oximetry, and CPT 99211 if a nurse comes out.
http://respiratory-care-manager.advance ... x?CC=54408

DSM-Guest wrote:If we don't engage the equip manufacturers in some manner, why would anyone bother to start this org & put effort into it ?

Another astute point. My question is: Lets say, after repeated attempts over the course of 24 months to engage the equip manufacturers in some manner, we have failed to do so. If you view that to be the primary goal of the committee, what purpose will the committee have served during those 2 years? It seems there ought to be a greater goal regarding dissemination of information to the new patient. If we reach an equip manufacturer and actually establish a dialogue, that would be great, but assume that we won't. Without that, are you of the opinion there is no point in developing such an organization?

That was not original objective of forming this particular group. I think that Bill and DSM's concern, and reasons for beginning this discussion began with frustration over some design flaws/limitations with Respironics equipment and they felt like there was no effective means to communicate those, and other, issues to Respironics in a manner that might be heard. The dialogue has been going on so long that original purpose has been lost. If there is a proposed new purpose or objective then that needs to be stated and discussed as well. Perhaps another group or a subset of the original group.

I understand that the possible goals/objectives (as yet not clearly defined) have expanded and contracted during this lengthy discussion but if it is going to move forward at all some line needs to be drawn.

To me the more diffuse the goals and objectives become the less effective the organization becomes unless it becomes large enough to muster some focused and energized "subcommittees" aieeeee!

David

Snoozin' Bluezzz wrote:That was not original objective of forming this particular group. I think that Bill and DSM's concern, and reasons for beginning this discussion began with frustration over some design flaws/limitations with Respironics equipment and they felt like there was no effective means to communicate those, and other, issues to Respironics in a manner that might be heard.

I see your point. If the objective of establishing this proposed committee is to create a dialogue between the user and the manufacturer to discuss equipment limitations, then that really is entirely different than forming a patient advocacy group.

Why would there need to be a committee to ask the manufacturer questions about the equipment? A user can pose those questions directly, through their sleep doctor, or through their DME. I would think the chances of questions actually getting answered are a lot better through them. What I'm wondering is, if the goal is to reach an engineer at one of the equipment manufacturers to discuss limitations, why do you need a committee to do that? Is it because you think a titled committee would have better luck getting through?

DSM-Guest wrote:If we don't engage the equip manufacturers in some manner, why would anyone bother to start this org & put effort into it ?

There is actually a broad area where the end-users (that's US!) and the equipment makers (maybe even DME providers/distributors) are squarely on the same side of an adversarial line that divides us from third-party payors, including the insurance companies, Medi-care, the federal government, etc. Namely, we AND the equipment makers would (should) like to see us using state-of-the-art technology and equipment, and to regard APAP as the "standard issue" for first-time xPAP users.

I believe a solid case can be made for regarding APAP as the "norm", and to regard CPAP/BiPAP as appropriate only in special circumstances. CPAP may be adequate when there is a "proven narrow range of pressure requirements" as established by multi-night sleep studies of sufficient duration to not only titrate the nominal 90% pressure adequacy for a small sampling interval, (a few hours typically), but to also validate that pressure requirement across the range of intra-night variability, and inter-night variability. That becomes an expensive proposition, in fact almost unheard of. The working assumption has always been that a sleep lab pressure titration is measuring some personal "constant" for a given individual. That this "constant" varies wildly from night to night, and even within different phases of sleep on any given night, gives the laugh to any notion that a sleep lab titration bears any relation to reality, except that it is (probably) correct "part of the time", or at least "once". How many would agree that a sleep study even SLIGHTLY resembles a typical night's sleep? (raise your hands.... )

Little wonder there is such a high dropout rate. Given that OSA is associated with, if in fact not causative of numerous other ailments, there should be great financial incentive to "get it right". I have come to believe by looking at the data (my own and many others) that it's simply not possible to "get it right" using CPAP at ANY PRESSURE, at least for some, if not the large majority of individuals.

I should think that a CPAP/APAP advocacy group would find a common ground with equipment makers to press our case for dispensing adequate equipment, and for educating/lobbying payors/providers that it is also in THEIR best interest to stop micky-mousing around with the cheapest equipment and with OUR HEALTH. As -SWS and UncleBob and others have suggested, something is seriously broken with the present system.

I also laud the efforts to liason with the equipment makers to exchange information and engineering details from the "grass-roots" perspective. It turns out that many "users" (lots of them on this forum) wear engineering hats, or stethoscopes, and have the academic and professional degress to have credibility. Why shouldn't we be heard? (Thanks DSM for continuing this effort!)

-Ric

I think the diffuse talk has to do with the fact that the system desperately needs to be collectively "engaged" by patients at all levels. Since the vast system cannot be initially engaged in its entirety by the very first committee to make the attempt, a focused start is necessary. I thus completely agree with the user group shaping up and focusing on precisely what they had originally intended. Considering their professional skills this type of mission is absolutely perfect for them.

Regarding whether attempting to interface with the manufacturers is an excercise in futility. It just may be. However, not even bothering to endeavor those steps in life that are necessary for the greater good makes life itself a gesture in sheer pointless futility.

Regarding all those other engaging activities that also need to happen. I agree with Snoozin' Bluezzz that another group of patients working toward those objectives are a much better solution rather than diverting this committee away from it's present focus. Subcommittee, parent committee, sister committee---hopefully a joint committee type that will add synergistic value to the efforts of the current committee. And hopefully an international committee as well. My no longer pipe dream for yet another committee is that official annual assessment report that apprises the entire system of its strengths, shortcomings, and progress from our collective point of view as SDB patients. That high-level scope of mission is definitely not a suitable task for a CPAP users group. However, that annual assessment would serve as a perfect blueprint for any joint committees and volunteers who wish to engage the system in any of the other areas that so desperately need to be engaged. Awareness and training within the medical community is a big one, as mention by Unclebob (hey, Unclebob! ). Awareness and education within the SDB patient population and the general population is another big one.

There are so many outstanding problems in that vast inefficient system, that this entire set of SDB patient problems have all the earmarks of a typical quagmire. Again, I believe it's because the system has always lacked of a general means of the patients being able to collectively engage the system. I think we could eventually use that higher level committee that does nothing other than assess the system and publicly provide that assessment. The system needs to be graded and perhaps even held more accountable. And the volunteers and joint committees need a blueprint from which to coordinate their efforts.

Indeed, the mission, scope, and focus of the CPAP user group is shaping up perfectly. I think they're doing a beautiful job of attempting that which has never been attempted before: collectively engaging the system on behalf of all patients. Wonderful!

I did not say that it was not a patient advocacy group that was your term (guest). I will have to stop speaking for Bill and DSM and let them speak for themselves again.

But, once again, I think they were frustrated by a perceived lack of an effective mechanism to bring important issues regarding equipment function and its effect on therapy.

There are a number of issues which have popped up here regarding Respironics, which could likely be extended to other manufacturers but the one of particular concern at the moment was the BiPAP flip/flap/flub/flaw. Other concerns that might be addressed are integrated oximetry, different or better implementation of data access and download (USB perhaps), interface condensation, poor interface design etc.

The nature of OSA therapy using xPAP technology means it is equipment and software driven making it primarily a matter of engineering design issues unless we want to attack marketing, sales and distribution issues as well. Too big a purview IMHO.

We need to focus on what we, as users/consumers, could really help them with. Since we spend hours/days/weeks/months/years with the machines and interfaces our approach could be how the machines and interfaces do, or don't, work effectively and what could be done to make them better based on our everday experience. It is clear to me that most designers (and sellers/fitters) of interfaces have not spent any significant time themselves using these interfaces or really testing them on live subjects for extended periods of time. They have not had noses erupt in sores, leaks dry out eyes, snorted significant quantities of water due to rainout, tried to wear this or that headgear for 8 hour stretches. It intrigues me that Respironics always pitches their interfaces using a manikin head that looks like Superman. They never show their interfaces on real live people. Resmed does but their models are distressingly average and normal. Lots of (don't know the percentage) of OSA sufferers are obese. Obesity is an indicator of OSA (cause or effect). I bear little resemblance to Resmed's models or Respironic's manikin. The entire thing appears to be distressingly hit or miss. They can make a lot of money with this hit or miss approach, particularly with diagnosis and referrals rising to an estimated 18 million sufferers. We need to help them understand that a lack of focus can hurt them economically.

Because of the multi-layer solutions (MDs, sleep centers, manufacturers, DME's, techs) there is little means for us sufferers to provide direct $$, feedback in the most effective manner. It is very, very difficult for us to vote with our feet.

So, back to the matter at hand. A group, advocacy or otherwise, needs to have a clear mission, a clear set of goals and a clear set of objectives to attain those goals or it is lost.

I think that focusing on one manufacturer and stressing interface/machine/software/data problems is a very good start which can be effective. It provides the means to vote with feet. We, as educated consumers, could make ourselves heard by Respironics (thereby Resmed and all the others) if we focused on that.

I agree with SWS as well the group going to any manufacturer has to be clear, firm but diplomatically and policitally sensitive because it would be very easy to evoke an FU response.

I'm done.


David

Greetings CPAPtalkers,

I've been mentioned a few times in this thread and figured I'd share my thoughts on the topic.

My first thought is "about time" and my second is "what can be done that is actually effective?"

Here is how the CPAP industry works:

Insurance companies: Set rates of reimbursement for products. For CPAP stuff, service pricing is theoretically built into the pricing. Cut out service, pocket the difference and you have a profitable business. See: Apria (http://finance.yahoo.com/q?s=AHG&d=t) and Lincare (http://finance.yahoo.com/q?s=LNCR&d=t).

If insurance companies raise rates, it won't increase service, just profit. This is because the companies that provide equipment to patients are not paid by patients and thus are only loosely accountable to them.

DMEs: The game is to get insurance contracts that pay well, find referral sources who will send you patients with those insurances and provide the cheapest equipment you can to increase your margins. Not all DMEs are "evil" DMEs, but those who are good swim against the tide of maximizing profits - which is dangerous in American capitalism.

Doctors and Doctors Assistance: Constantly marketed for referrals. Jaded and trapped by an insurance system where they are losing power and control over their practice. A lot of them are starting their own sleep labs and DMEs to try to do it better and make money.

Manufacturers: Publicly traded companies who answer for their bottom line every three months. They want to sell the maximum amount of product for the max price possible. Make no mistake about it, it is about profit and the dollar. It is the sole motivation. In a world where insurance wasn't rampant, this would be a good thing - but insurance does exist in its current form and it perverts the whole system.

DME is 96% of the market and internet is 4% of the market. They make "lite" machines because the big boys profit most on them and have the market share to demand it. They will continue producing these kinds of machines until the market demands otherwise. They will always serve the market, because the market represents profit.

Here's how CPAP.com works:

We serve the market by rejecting insurance out of hand. If you want it, you can buy it. In this way, we make ourselves accountable to you the customer. CPAP.com is a beautiful thing due to this.

Every day we grow stronger and DMEs grow weaker but the industry is huge and pricing is so tight in our niche that mass advertising isn't financially prudent. So we continue to grow at the rate that people type "cpap" into a search engine. It is very frustrating considering how much better our model is than the competition.

I believe this is true: on the day that CPAP.com has the market share to affect the stock price of the big brands you will see the big brands start to tune in to end user customers. Before that day you will not - no matter what else you do.


Here's how CPAPtalk.com Works:

CPAPtalk.com is a community whose users are linked and bonded by (1) being CPAP users (2) the belief that CPAP issues should be discussed freely without heavy handed administration.

When I founded CPAPtalk, I hoped that people would get together, realize what was going on, and fight it. We went to APSS and introduced CPAPtalk to the world - our thread giving news and results from the event was largely untrafficed. We gave away DVDs but demand was weak as word of mouth from this community didn't materialize. We tried to host chats but met with a weak reception. We interview manufacturers and give the CPAPtalk community a chance to ask questions that'll produce change, but these too are not well received.

Right now, I view CPAPtalk as a positive place CPAP newbies can come and get good advice. I view it as a place where people have created lasting friendships and network socially. There is nothing wrong with either of these things, however, the harsh truth is that we more closely resemble a CPAP country club than a user driven force in the industry. I have tried to change this but I too am running a business and have clearly gotten the message as to what user demand for my cpaptalk product is.


I do not believe individual customers are valued by large corporations. Corporations value trends they can tap into for profit. Any group you form will represent individuals. CPAP.com and CPAPtalk.com represent a fledgling trend. The dollars you spend are used by our company as leverage to try to product change. They speak most loudly.

I'd like to put these questions to those who would like to start this group:

#1 What leverage do you have that can force your group to be heard?

#2 How can you make use of the leverage CPAP.com and CPAPtalk.com represent?

#3 Do you believe there is a force more powerful than dollars to corporations?

I support this change and the people heading this push. It is morally right to do it and the more success you have making people aware of their options the better CPAP.com does because it is the best of those options.

I don't ask these questions in a mean spirited way but instead ask them to try and get answers to questions I myself struggle with. I hope they are taken in that spirit.

I believe the answer to this mess it to let customers know they have the CPAP.com option available to them. The question is how to do it.

Johnny

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): cpap.com, news, CPAP, DME, Power

Thanks Snoozin' Bluezzz and -SWS. I understand now what you are saying.

Regarding my pessimistic view that attempting to interface with the manufacturers is futile; I'd like to be wrong, I really would.

Note to self: nothing ventured, nothing gained.

Good luck!

johnnygoodman wrote:I'd like to put these questions to those who would like to start this group:

#1 What leverage do you have that can force your group to be heard?

#2 How can you make use of the leverage CPAP.com and CPAPtalk.com represent?

#3 Do you believe there is a force more powerful than dollars to corporations?

Excellent questions, Johnny. You really hit the nail on the head. Thank you so much for your input!

I don't want to be cynical, but.......

Over the last several days I've been browsing the ASAA's website for information as to why THEY haven't been more successful in the CPAPer's education. From periodically looking at all the posts they get.....which are similar to the ones here:
"HELP!", "I'm new at this.", "New and scared", "Now what do I do?", "Misdiagnosed", "Almost a year and still struggling", "Lost my job", "My job is in jeopardy", "I can't do this!", etc., etc., etc.

I'm not trying to "trash" them, but with all of their resources, why isn't this working any better than it is? (or did I just answer my own question) In view of the fact that they've been in existence since 1990 and they've got links to and support from the big equipment manufacturers, lots of MD's on their board of directors, etc.....I'm wondering why "the word" isn't getting out.....

I had never heard of the ASAA until a few months after I had been reading this forum. Likewise, A.W.A.K.E. (of which there are no groups in this area anyway). The only way a few of us are finding these forums and about the support groups is on the Internet.....and usually by then it's often times too late (judging by the comments we see like: "I wish I'd have found this forum sooner."

The question is: How do we help (or get information to) the apnea sufferer BEFORE they: go to the doctor, talk to their insurance provider and deal with a DME? Maybe some of the newest users have some ideas. "How could you have been helped sooner?"

If you haven't looked at these links before, they're "interesting".

http://www.sleepapnea.org/sponsors/index.html

http://www.sleepapnea.org/about/sponsors.html

http://www.sleepapnea.org/about/board.html

http://www.sleepapnea.org/about/history.html

http://www.sleepapnea.org/sponsors/orgmembers.html


Den

Anonymous wrote:

johnnygoodman wrote:I'd like to put these questions to those who would like to start this group:

#1 What leverage do you have that can force your group to be heard?

#2 How can you make use of the leverage CPAP.com and CPAPtalk.com represent?

#3 Do you believe there is a force more powerful than dollars to corporations?

Excellent questions, Johnny. You really hit the nail on the head. Thank you so much for your input!

I agree:

• #1. Focus, focus on one manufacturer is the only chance. Then numbers, need people so the scope would have to expand far beyond cpaptalk.com (is it possible?).
  
  #2. Numbers, meaning $$. What spending power does this small group represent? How can it be extrapolated? How can it be expanded?
  
  #3 No. The question is how to make an economic impact. Good press? Bad Press? Pure market pressure (very, very difficult in the model as it exists).

I do not know how representative I am, not very in all likelihood. I have the financial means and willingness to go outside of the system a little bit. I have a script and will pay out of pocket to get what I need in this case since I have little leverage within my HMO and with my DME. I have this means because I am working, single and have no dependents. Rare case. I can vote with my feet yet what I can vote for is not particularly attractive. I can vote on vendor/dme and gear - Resmed S8/Remstar Auto/PB 420 yadayadayada, six of one, 1/2 dozen the other in real truth. One has C-Flex, one has EPR, one has neither but good humidity control. One is smaller, one is quieter, one has this algorithm, one has another. Perhaps I would like EPR but on Auto with good humidity control built in (and oxyimetry by the way). I can't get it. I would like the Headrest with better headgear, better tension on the point of interface, no rainout and without the CO2 exhaust problem I may, or may not, have. I can't get it. I am settling all the time. I have choices and most of them are compromised.

We might be able to make a difference for others but then again, perhaps not. There are a lot of $$ to be made here which means the forces of the dark side are powerful. Why should this gear require a prescription? What is the real argument for it (rhetorical question, PLEASE). Can it be pried out of the hands of all those folks that have such a vested interest in maintaining the status quo? Perhaps not, since then the real leverage of the market would come to play.

So, my $.02, there is no reason not to proceed but Johnny's questions need to be answered, the mission of any such group clearly defined, goals clearly stated and objectives made manifest and accountable otherwise it will be a big waste of time.

David

johnnygoodman wrote:#1 What leverage do you have that can force your group to be heard?

Since you asked . . .

Trying to get an answer to this very question is precisely the reason I started this thread - to obtain a head count. As individuals we carry little or no clout in the design process. At best, perhaps a complaint or two gets through to engineering. As a group though, we offer the ability to disseminate information rather than simply lodge complaints. I suspect this is more important to the manufacturers than is generally recognized.

My belief is that the xPAP equipment manufacturers understand the concept of repeat customers. While it may generally be true that the initial xPAP customer has little choice in equipment and likely gets stuck with whatever is provided to him, I very much doubt that is still generally true of folks who have been on xPAP for a period of years.

In regard to equipment complaints, as a group we have the ability to provide constructive feedback to the manufacturers in a manner which makes the job easier of producing equipment for the end users which allows higher compliance and more effective therapy, both strong selling points for their marketing teams. The value we can add to the manufacturers is, I believe, very real and is marketable in the same way that C-flex is marketable. C-flex offers a measurable improvement in compliance which provides Respironics a competitive edge among certain physicians who are truly concerned about patient success, as it does affect their bottom line. If that were not true then there would be no reason at all for Respironics to market C-flex.

Is our leverage overwhelming? No. Is it large enough to establish a connection? I believe that it is. I suspect what we will find is that the different manufacturers have different thresholds. Perhaps not all will talk with us initially. But as has already been said, Rome wasn't built in a day. I believe what we are attempting is realizeable and the approach being taken is fundamentally sound. I am also very pleasantly surprised at the enthusiasm already being generated for the effort here.

johnnygoodman wrote:#2 How can you make use of the leverage CPAP.com and CPAPtalk.com represent?

I believe that CPAP.com represents the industry trend and for that reason the manufacturers are not likely to ignore it.

As for CPAPtalk.com, it is obviously the community which has fostered this effort. I see the relationship continuing on a mutually beneficial basis, but haven't thought too much beyond that.

johnnygoodman wrote:#3 Do you believe there is a force more powerful than dollars to corporations?

No.

I speak for myself, but this is how I see things fitting together. Hopefully, others will offer additional insights.

Regards,
Bill

A late arrival. Yes...I would do what I could to advocate for xPAP consumers-though my involvement would not be in a technical area. I would not want to detract from the general forum nor would I want to see your valuable knowledge be "taken away" from the forum. The forum is valuable to new users because of the support of cpap.com and the extensive knowledge base of experienced xPAP users. Your efforts would give a new focus to the forum. I know that what you are seeking to do is time consuming and it is worth doing.

A couple pages back SWS said

There are well-intended patient advocacy organizations that run under the auspices of researchers, health care providers, manufacturers, and DME providers. However, to my knowledge there are no patient advocacy groups that are purely driven by the patients and purely for the purpose of benefiting the patients. The other advocacy organizations all have “mutually beneficial” arrangements that in my opinion leave the vast voids that are presently unaddressed.

There ARE advocacy groups driven by "patients"/consumers-women with breast cancer and people with HIV disease are two groups that have advocated for the benefit of all persons with those diseases. Generally they have focused on drug manufacturers. They are a force behind drug and disease education efforts, educating care providers and drug manufacturers about cultural differences in diagnosis and treatment, and in drug companies establishing PAP's ($ assistance to patients otherwise unable to pay for drugs) Female HIV activists increased awareness in the medical community that HIV and the drugs for its treatment affected women differently. They have made significant contributions.

johnnygoodman asked

What leverage do you have that can force your group to be heard?

The equipment manufacturers need input from the people who use their equipment. If they do not yet know that-they will need to be educated. GlaxoSmithKline (as Galaxo Wellcome)once hired a patient advocacy consultant group in San Francisco to help them communicate with patients/consumers. Some advocacy groups have hired consultants to help them communicate with the manufacturers. Some with the required knowledge have gone into it themselves.

It seems as if you/we need at least three levels of participation in a users group-those with the technical knowledge of the equipment to communicate with the manufacturers, knowledgeable people with PR expertise, and the larger numbers of people like me who can provide the "weight" of our numbers in having leverage and in giving input about problems in using the equipment.

krousseau wrote: A couple pages back SWS said

There are well-intended patient advocacy organizations that run under the auspices of researchers, health care providers, manufacturers, and DME providers. However, to my knowledge there are no patient advocacy groups that are purely driven by the patients and purely for the purpose of benefiting the patients. The other advocacy organizations all have “mutually beneficial” arrangements that in my opinion leave the vast voids that are presently unaddressed.

There ARE advocacy groups driven by "patients"/consumers-women with breast cancer and people with HIV disease are two groups that have advocated for the benefit of all persons with those diseases. Generally they have focused on drug manufacturers. They are a force behind drug and disease education efforts, educating care providers and drug manufacturers about cultural differences in diagnosis and treatment, and in drug companies establishing PAP's ($ assistance to patients otherwise unable to pay for drugs) Female HIV activists increased awareness in the medical community that HIV and the drugs for its treatment affected women differently. They have made significant contributions.

Beautiful point, krousseau. I really meant to say "SDB patient advocacy groups". However, let those other successful patient advocacy groups serve as a highly useful model for us.