Would a Private Boycot of ResMed be a Fair Tactic?

I have no idea what data a ResMed LCD provides, but one thing I think is very important is the length of your apneas, or as Respironcs' software has it, average length of apneas. It may not be RedMed's fault that they have to stop selling this software to patients, but they could, like Respironics did, create software they can sell to patients.

Pam

rosiefrosie wrote: ........ Their reply was to have my MD write a prescription for the software. ........

"For in a Republic, who is 'the country?'
Is it the Government which is for the moment in the saddle?
Why, the Government is merely a servant -- merely a temporary servant;
it cannot be its prerogative to determine
what is right and what is wrong,
and decide who is a patriot and who isn't.
Its function is to obey orders, not originate them."
-Mark Twain

The two major parties have taken us a long way from the right path.

DSM.

Yes, I could purchase it from Australia - it is the idea that I can't get it in my own country that rankles. It is also the thought that groups or organizations that have more clout than individuals, can get a ruling passed that effects the individual, and we can say or do nothing to change the ruling.

It is a matter of Individual Rights being trampled by those with power.

Jan

Regarding the ResMed Software:

I believe it is the FDA is the driver behind not being able to buy software.
What company wouldn't sell a product people want to buy?

I have sent an e-mail to ResMed asking for them to create a patient version of the software (no machine adjustments).

I did buy ResScan 3.7 from cpapaustralia.com. No Rx, no question, no problem (and cheaper).

Mark

rosiefrosie wrote:I did send ResMed an e-mail about not selling the software to pts with the comment about people not buying their machines because of it. Their reply was to have my MD write a prescription for the software. Hmmmmm....... I was able to purchase the software from cpap.australia at a cheaper price than (if I could) buy it here. It took a little over a week to get it.

That is an interesting issue. You are saying that Resmed told you they could sell it to you if your doctor wrote it into your cpap prescription ?.

If this can be verified it sure improves the situation somewhat. But, we all know it can be bought cheaper from Aust, so why bother ?. Also I totally agree that Resmed should be providing a version of their software with the required legal changes, that can be sold without FDA interference, to us users.

One benefit of the ResScan software that I do like is the ability to expand as little as a couple of minutes data from a whole night, into a full screen, and to split the screen so the selected sub-portion can be expanded into the lower panel. That granularity is very helpful in looking right into events that are scored. I also use a Reslink module to get even more detailed data so that ability to drill down shines when compared to all the other software I have tried on different brands. Resmed 'owe' it to us to make it freely available. I just hope & trust they are doing something about it. To ignore 'us' is not smart.

DSM

rosiefrosie

Well, I was so irritated, why didn't I think of contacting ResMed? You did the right thing, more of us should have bombarded them with complaints.

rosiefrosie wrote:
........ Their reply was to have my MD write a prescription for the software. ........

Did you send your letter/e-mail or whatever to an address in Australia? If so will you let me know the address I want to contact them and ask if a MD writes a prescription, can a person get the software in USA. Does the M.D. have to be a sleep doctor? And, what would the prescription have to specify? . . .

Jan

SaltLakeJan wrote:DSM.

Yes, I could purchase it from Australia - it is the idea that I can't get it in my own country that rankles. It is also the thought that groups or organizations that have more clout than individuals, can get a ruling passed that effects the individual, and we can say or do nothing to change the ruling.

It is a matter of Individual Rights being trampled by those with power.

Jan

"For in a Republic, who is 'the country?'
Is it the Government which is for the moment in the saddle?
Why, the Government is merely a servant -- merely a temporary servant;
it cannot be its prerogative to determine
what is right and what is wrong,
and decide who is a patriot and who isn't.
Its function is to obey orders, not originate them."
-Mark Twain

We need to kick the whole damn bunch out of Washington and start all over.

But we keep reelecting incumbents at a rate over 90%. I guess we American sheep get what we deserve.

mars wrote: . . . My guess is that it would only take one or two days to disable the relevant code, maybe only one or two hours, and then there would be a user version available. . . .

It may not be as easy a matter as ResMed merely disabling the pressure-change capability in ResScan for patients. I assume it may also be a matter of insurance companies (who seem to run the world) wanting the report from a DME to be one that could only be generated by a clinician, not a patient, in "proving" compliance. So the patient version might have to look very different.

That is only a wild assumption (aren't they all?) on my part, though.

jeff

jnk wrote:

mars wrote: . . . My guess is that it would only take one or two days to disable the relevant code, maybe only one or two hours, and then there would be a user version available. . . .

It may not be as easy a matter as ResMed merely disabling the pressure-change capability in ResScan for patients. I assume it may also be a matter of insurance companies (who seem to run the world) wanting the report from a DME to be one that could only be generated by a clinician, not a patient, in "proving" compliance. So the patient version might have to look very different.

That is only a wild assumption (aren't they all?) on my part, though.

jeff

JNK,

Actually, that makes a lot of sense. If there are laws or employment rules about people having to meet certain compliance levels & if someone with the 'clinical' version of either Respironics or Resmed's software, could produce a falsified 'doctors' report, then yes I can see that a user version needs to look very different.

DSM

rooster wrote:. . . You definitely need to see what happened and when. Especially if you have positional sleep apnea.

From the ResMed screen I might see that I had 30 apneas in 8 hours. But on the Respironics daily detail report I might see that 29 of them came in the 45 minutes that I slept on my back. . . .

I did not know the Respironics daily report specified when you are sleeping on your back.

A person's PSG should make it clear whether their apneas have a positional component. As for a patient dealing with positional apnea on his own, all he has to do is rig up a rooster-rig to stay off his back and then see what that does for his numbers. That would be a good thing to do regardless of assumptions made about what position a person was in during a reported clump of apneas, as I see it.

Similarly, if one has a leak problem, I think that should be addressed regardless of the time of night it occurs.

So I still don't see how the timing helps with the true decision-making on making therapy more effective or less effective, when you have all the data that a data-ResMed gives and puts at your fingertips, without software.

If DMEs did their jobs and were willing to hand patients printouts of the software for free any time a patient asked (which a few do, I understand), then the results of the software would still be available for a patient.

I don't mind anyone calling ResMed cowards. All businesses are. And I think all smart companies are cowards when faced when a one-two whammy of a government being in cahoots with the mega-big-business of the insurance industry.

This represents the wildest of suppositions, but I have a friend who was an Administrative Assistant to a Congressman. She swears this would be a plausible scenario in our Nation's Capital

A member of Congress gets a bug in his ear from an organization or individual or insurance company; major contributors to his re-re-re-reelection funds. The significant contributor is incensed about the danger sleep apnea patients face if they continue to use software to change the pressure on their machines. Our noble Representative then contacts FDA, who is light years beyond on their Black Box warnings on dangerous medicines. However, the FDA sleepily awakens and issues a ruling regarding pressure changes and sleep apnea software. Wow, whatever that was, it must have been a serious danger.

Ridiculous, or reality?

Jan

SaltLakeJan wrote:. . . Ridiculous, or reality? . . .

These days, I think few things are as ridiculous as reality.

This is the response to the e-mail I sent to them.



Dear Rosie,

Thank you for taking the time to email ResMed with your concerns. We appreciate the fact that you are actively involved with your therapy and want to manage it accordingly. Because these devices and masks are of prescription requirement, we cannot sell the ResScan software to patients. All of our previous software versions have been for clinical settings only and not intended for home use. The clinical software allows for changes in therapy pressures, modes, sensitivities where appropriate.

The restriction for clinical use is dictated by the FDA.

You may want to ask your physician for a prescription of the software that would allow you to purchase and make changes with his/her understanding that you will be in control of changing the prescription as you deem appropriate.

Once again, thank you for your email as we are tracking requests for a patient-friendly home version of software.

Best Regards,

Nichole

ResMed Customer Service

SaltLakeJan wrote:This represents the wildest of suppositions, but I have a friend who was an Administrative Assistant to a Congressman. She swears this would be a plausible scenario in our Nation's Capital

A member of Congress gets a bug in his ear from an organization or individual or insurance company; major contributors to his re-re-re-reelection funds. The significant contributor is incensed about the danger sleep apnea patients face if they continue to use software to change the pressure on their machines. Our noble Representative then contacts FDA, who is light years beyond on their Black Box warnings on dangerous medicines. However, the FDA sleepily awakens and issues a ruling regarding pressure changes and sleep apnea software. Wow, whatever that was, it must have been a serious danger.

Ridiculous, or reality?

Jan

That is a reality.

When I am a few more years deeper into retirement and absolutely sure I don't want to go into business again, I will tell you some things I easily (and legally) accomplished with Congress. It is a matter of public record and I will include the links.

jnk wrote:...........
I did not know the Respironics daily report specified when you are sleeping on your back.

.........

It won't be for like this for everyone, but when I see the apneas roll in and the pressure slowly rise from the min of 8.5 up to 14 or 16 or 18, then you can be sure I was sleeping on my back. Typically I will get 30 to 35 apneas in 45 minutes and then wake up and roll to my tummy or side and turn the machine off/on to get the pressure back down to 8.5.