ACTION ALERT: Your CPAP data is being held hostage - ACT NOW!

[Budgie]

"After you've contacted several people to voice your concern, please post a reply in this thread to let everyone know you've done your part to stop non-medical professionals from denying you access to your personal medical data.  Your reply will also "bump" this thread to the top of the Main Forum so that it remains highly visible. "

I have posted a short description of the problem and a link to this thread at Diabetes, Sleep Apnea and Encryption! .

Thanks.
B.

[SuperSleeper]

Excellent Budgie!

[SuperSleeper]

Just an update - I got a response from CBS news last week and they forwarded me to a researcher who is working on the DS2 recall issue.  Apparently the story could either be on CBS Sunday morning or Eye on America. 

Just a follow-up-- the researcher returned my email-- apparently the story got nixed.  She said it was a decision from someone "higher up on the food chain" and that she didn't know the exact reason.

[HenryECole81]

STOP using Phillips Respironics machines. They do not operate in the patients best interests.

[Dog Slobber]

STOP using Phillips Respironics machines. They do not operate in the patients best interests.

STOP using *any* Philips products.

[Albigensian]

Hi, all.

I wonder if it is worth mentioning that this new requirement will substantially increase costs to insurance companies, as CPAP users would need to see a "medical professional" for even very routine modifications of their settings (like those required when one travels from one altitude to another).

Medicare should be interested in the issue, as should the insurance giants like United.   What if they were to remove the "locked down" machines from the list of those that they will cover?

I need to give this a bit more thought and figure out to who'd be interested in this in the insurance world and how to approach them.    We also need strong analogies, I think, to make the point that laypeople can handle basic adjustments with the medical professionals as backup and oversight (e.g., checking in with a doc every x number of months).    I just spent a few weeks administering nuclear-bomb-level antibiotics through a drip into a PICC line in a family member's chest:   I got 15 minutes of training from an RN and the insurance company saved a zillion dollars because he wasn't coming in to a hospital for his infusions.   We can make the point that we are "trained" (by the DME and the MD) and are able to do some very basic adjustments.    I like the example of changing altitudes as triggering the need for adjustments.   There must be other similarly innocuous adjustments that we can use as examples.    Obviously, we can't say, "if we don't do it on our own, it'll never be done because the DME's are mostly scammers and the sleep docs ignore all of this stuff."

Just a thought.   If we had to see a medical professional every time we wanted an adjustment, we'd stagger under the copays -- but the insurance companies would stagger under the actual payments.   Medicare, in particular, would take a big hit.

Meanwhile, I'll send off letters to the manufacturers.  I'm hoping Resmed will see it as yet another market advantage.  They've been very clever over the past several years -- very responsive to market niches.    It could be another way to cement their emerging advantage. 

Thanks to all who raised this issue and who are taking action.

[FLsleeper7]

I called Congressman Darren Soto's office. They said they can't help me and recommend I hire a lawyer and sue.

They did say they could send me a LGBTQ+ flag that had been flown over the Ukrainian capitol, though there's an 18 month long wait list for that.

[SuperSleeper]

Thanks to everyone who helped get the word out about this development and to those who continue to help.  So far, no other CPAP manufacturer has chosen to encrypt the patient's data the way Philips has.   There's no real way to determine if any of our efforts helped to prevent that, but I do appreciate everyone's efforts to express their opinions to the various people who might be able to at least stop this from spreading to other manufacturers.