What "Law" stops Respironics from talking to us?

dllfo · Post by **dllfo** » Mon Sep 17, 2007 3:52 pm

I have a prescription for Encore Pro 1.8.65. It installed on my laptop just fine, but wouldn't install on Win Pro 2000 (my desktop computer) so I tried to install it on my wife's laptop (both are Home XP sp4) and it told me to contact customer service. I have lost several laptops over the years, so I try to keep back up data.

I called Respironics, was put on hold for customer service who never answered. After 17 minutes on hold I left a msg. I called back and was told they had already went home for the day. So I asked for customer service with the SV unit.

I did not get the person I wanted, so I asked Mark why the lights aren't dimming on the face of the unit. He said he would have to tell me the codes for the provider's manual to make the changes. I told him how to access the provider's side and he said it didn't matter. It was against the law for him to talk to me about it. I asked him what laws, would he please tell me?

He changed the subject. I told him I would send them a signed waiver if that would help. It wouldn't matter. He says I am supposed to talk to my DME about the product. I told him I couldn't find a DME in Sacramento who had seen the Inservice Package yet.

He is uncomfortable discussing this subject, so I thanked him and asked who his supervisor is, I will call him tomorrow.

So do any of you know of a real law that states they cannot discuss this stuff with us? A LAW!! Not a company regulation.

BTW...the SV is awesome. Poor manners for home use, but the ability to move air is amazing. If I could get those lights and ALL of the alarms shut off, I would give up chocolate.

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CPAPopedia Keywords Contained In This Post (Click For Definition): respironics, Encore Pro, DME, Prescription

Wulfman... · Post by **Wulfman...** » Mon Sep 17, 2007 4:01 pm

We'd like to know WHAT LAW they keep referring to, too!!!

If you can pin them down and find out, PLEASE DO.

We've been hearing that mumbo-jumbo from them all along and we're told it's FDA rules.....but nobody can find them.

It would be logical for us not to "legally" be able to change pressures on someone else's machine......but on our own machines??? BS!!!

Take care.

Den

Slinky · Post by **Slinky** » Mon Sep 17, 2007 4:23 pm

I would assume since xPAPs require a script to be "dispensed" to the patient AND that even the DME can NOT change the set pressure except under order of a physician that that is the "law" Respironics is referring to. After all, pressure changes, etc. can be made via the software (which we aren't supposed to have - uh hmmm).

You could try asking WHEN the Respironics Rep would next be in your area visiting DMEs and that he be sure to have the SV's Inservice Package w/him to instruct your DME supplier on how in the blazes to make the necessary changes.

Wulfman... · Post by **Wulfman...** » Mon Sep 17, 2007 6:40 pm

Slinky wrote:I would assume since xPAPs require a script to be "dispensed" to the patient AND that even the DME can NOT change the set pressure except under order of a physician that that is the "law" Respironics is referring to. After all, pressure changes, etc. can be made via the software (which we aren't supposed to have - uh hmmm).

You could try asking WHEN the Respironics Rep would next be in your area visiting DMEs and that he be sure to have the SV's Inservice Package w/him to instruct your DME supplier on how in the blazes to make the necessary changes.

Well, then SOMEBODY should be able to definitively stipulate that "law", where we can look it up, etc., etc. A law requires a statute (I believe).

Or, phrased another way:
If that law is well known to them, then they shouldn't have a problem telling us where we can find it.

Den

dllfo · Post by **dllfo** » Mon Sep 17, 2007 7:09 pm

EXCELLENT POINT Slinky. So you are not just another pretty face

Den...I intend to ask them again tomorrow. If they don't know, and I imagine they don't really know, I will ask to speak to management.

ALL I WANT IS TO TURN THE BRIGHT LIGHTS OFF OR DOWN. How dumb is it to put the lights in forbidden territory??????????????????????????????????????
REAL DUMB!!

I set my own EPAP and IPAPs (Max & Min). As I told Repironics, please tell me who around Sacramento, CA has been to the In-Service on the SV. Now I will ask them if I can attend. Of course I have no business attending a professional seminar in this field, but I would like to find one.

I have an offer from one of our Pro's on this forum, so I will contact them.

But really, come on Respironics, I love your equipment and have 4 of them in the family. The SV appears to have been designed for clinics. But WHY put the lights in the forbidden zone? A goof or a good reason?

Goofproof · Post by **Goofproof** » Mon Sep 17, 2007 7:26 pm

This is one time you wish they would keep you in the dark! Jim

Slinky · Post by **Slinky** » Mon Sep 17, 2007 7:46 pm

Well, THANK YOU, dllfo!! What a sweet thing to say!

Right on, GoofProof!!! Off means Off and we should be able to access the On to turn it Off!

Snoredog · Post by **Snoredog** » Mon Sep 17, 2007 7:55 pm

I think you have been around these forums long enough to KNOW what kind of a response you would get contacting the manufacturer directly.

Just because you have a SV machine or your doctor wrote you a script for the software doesn't make it okay for you to call the manufacturer for advice.

They are NOT allowed to give you any medical advice, that has to come from a licensed doctor. In fact if you get down to it I don't even think a RT can give you medical advice, they can only follow orders given to them by a licensed doctor.

If there is any bending of those rules, then it is/was being done without the company's attorney knowing about it. Those rules are pretty much governed by the FDA and it does them no good to side step them.

Sure it pisses you off but they don't care, in fact I bet they find dealing directly with patients a PIA any way you look at it.

As for dimming your LED's?? Remember those were put in place by the same idiots that put the BRIGHT BLUE LED's on the m series and you cannot turn those off either. So what makes you think you are special and are to receive any thing over what others have gotten.

In fact your complaints do nothing for patients taking over their own therapy it is perfect example of why they shouldn't.

If you have a unique machine of which their is not much public support then your doctor should have instructed the DME to give you the Providers Manual for the machine where you wouldn't have the need to call the manufacturer.

Sorry, but you don't have a leg to stand on, rebellion about it only seems to make our life more difficult. If you are ignorant enough to call them about installation of the software when it has been said here at least 1,000 times that software has no support then you deserved the outcome you got.

And I wouldn't expect much more with Encore Viewer if/when it ever comes out either. Hopefully it was written for Windows and doesn't have a stupid database requirement.

Haven't you ever noticed there is NO complaints with Puritan Bennett's Silverlining?
I've used a version of that when it wasn't even available yet, a friend gave me a copy from his 418P and with some tweaking worked. It allows you to change all machine settings even set the internal clock to the PC's time. Very simple to program the machine, they were not stupid enough to label it Prescription settings. Silverlining software could easily be installed by a 4yr old clicking on the Setup file, I've installed it on a half dozen computers over as many years and it has worked every time. Same for when I had AutoScan software, it installed without a hitch and it didn't have any database either.

Let's hope Respironics grew half a brain this time around and got rid of that POS database, then all you have to worry about is getting the 1.1 USB driver to work.

Encore Pro is not going to allow you to turn the LED's off anyway so you are spinning your wheels there.

Tell your doctor you need the manual and get it from them.

6PtStar · Post by **6PtStar** » Mon Sep 17, 2007 9:18 pm

Sure it pisses you off but they don't care, in fact I bet they find dealing directly with patients a PIA any way you look at it.

What was it that the guy that I suspected worked for Respronics used for his sign in SOC (Sick of Complaints)

Vasily · Post by **Vasily** » Mon Sep 17, 2007 9:40 pm

dllfo,

I will get out the SV tomorrow and see if I can dim the lights in the settings. If you set your own pressures though, you are already in the providers menu, and if there isn't an option there to dim them, than it doesn't exist. There is no other secret menu.

I got an AVAPS today also, so will be playing around with that also. RT's that talk about having to recieve an inservice on a machine before they set it up are not true RT's IMO. Real RT's tinker and create, I remember creating a NIF gague with an incentive spirometer and an infant ET tube out in the desert!

Guest · Post by **Guest** » Tue Sep 18, 2007 12:46 am

Silverlining is the best software as compared to the rest. No hassles whatsoever. The software and the unit features have no conflict, as I have observed personally. As for Respironics, its software and the units high tech features (AFlex and/or CFlex), I believe, is causing great conflicts which is why the company keeps on trying to put all justifications for as long as it can to mislead us and hide the truth. While AFlex and CFlex are indeed convenient features that so many users, myself included, recognize, I still find that we are kept in the dark without the applicable software.

ozij · Post by **ozij** » Tue Sep 18, 2007 5:45 am

I posted this on another thread a couple of days ago... I was browsing the FDA site.

This is the person who submits Respironics' requests to the FDA. Since we've learned that "Respironics cares" I have no doubt she'll be delighted to show Respironics users the letter in which the FDA demaned they keep the software away from patients.

Ms. Zita A. Yurko
Manager, Regulatory Affairs
Respironics, Incorporated
Sleep & Home Respiratory Group M A 0 D ?007
1001 Murry Ridge Lane
Murrysville, Pennsylvania 15668

724-387-4120
724-387-4206 (fax)
Email: Zita.Yurko@Respironics.com

Happy hunting!

O. (A happy user of PB's machine and software...)

Slinky · Post by **Slinky** » Tue Sep 18, 2007 8:04 am

Ozij, have you seen this letter yourself or can you give us a URL where it is available to read?

ozij wrote: ... I have no doubt she'll be delighted to show Respironics users the lettter in which the FDA demaned they keep the software away from patients.

I'd sure like to see that letter!!! Resmed was the first company to insist that software not be sold to patients, a good six months before Respironics began discouraging the sale of software to patients.

Wulfman... · Post by **Wulfman...** » Tue Sep 18, 2007 8:29 am

dllfo wrote:I have a prescription for Encore Pro 1.8.65. It installed on my laptop just fine, but wouldn't install on Win Pro 2000 (my desktop computer) so I tried to install it on my wife's laptop (both are Home XP sp4) and it told me to contact customer service. I have lost several laptops over the years, so I try to keep back up data.

I called Respironics, was put on hold for customer service who never answered. After 17 minutes on hold I left a msg. I called back and was told they had already went home for the day. So I asked for customer service with the SV unit.

I did not get the person I wanted, so I asked Mark why the lights aren't dimming on the face of the unit. He said he would have to tell me the codes for the provider's manual to make the changes. I told him how to access the provider's side and he said it didn't matter. It was against the law for him to talk to me about it. I asked him what laws, would he please tell me?

He changed the subject. I told him I would send them a signed waiver if that would help. It wouldn't matter. He says I am supposed to talk to my DME about the product. I told him I couldn't find a DME in Sacramento who had seen the Inservice Package yet.

He is uncomfortable discussing this subject, so I thanked him and asked who his supervisor is, I will call him tomorrow.

So do any of you know of a real law that states they cannot discuss this stuff with us? A LAW!! Not a company regulation.

BTW...the SV is awesome. Poor manners for home use, but the ability to move air is amazing. If I could get those lights and ALL of the alarms shut off, I would give up chocolate.

In re-reading David's initial post, I wonder if what I highlighted makes any difference......

If there IS a law or FDA regulation, then they should be able to cite it.

Den

Snoredog · Post by **Snoredog** » Tue Sep 18, 2007 8:52 am

[quote="ozij"]I posted this on another thread a couple of days ago... I was browsing the FDA site.

This is the person who submits Respironics' requests to the FDA. Since we've learned that "Respironics cares" I have no doubt she'll be delighted to show Respironics users the letter in which the FDA demaned they keep the software away from patients.

Ms. Zita A. Yurko
Manager, Regulatory Affairs
Respironics, Incorporated
Sleep & Home Respiratory Group M A 0 D ?007
1001 Murry Ridge Lane
Murrysville, Pennsylvania 15668

724-387-4120
724-387-4206 (fax)
Email: Zita.Yurko@Respironics.com

Happy hunting!

O. (A happy user of PB's machine and software...)

What "Law" stops Respironics from talking to us?

What "Law" stops Respironics from talking to us?

Re: What "Law" stops Respironics from talking to u