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

[sonicboom]

In reply to srlevine and SuperSleeper it is precisely for those reasons (lack of interest) that someone with a personal connection to someone like Dr. Topol is of utmost importance. There must be people who are members here from San Diego who know of or have access to Dr. Topol. If you get him interested he will be able to spread the word given his prominence. Like many things in life its not what you know its who you know. Connections are everything.

[SuperSleeper]

If anyone has a personal connection to Dr. Topol, or anyone else who can help, I'm all for them attempting to introduce them to this issue and asking for their assistance.  We need all the help we can get. 

I was hoping also that we could create a groundswell of individual patients contacting media and other influencers - as a lot of people contacting them on the same issue would be likely to pique their interest in this story.  I simply didn't want people to think that all the effort could be done by "other people" without the average CPAP patient getting involved to build momentum.

There's undoubtedly many different paths we can take to simultaneously make a difference.  I'm for anything that works.  

[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 got off the phone with her this afternoon and she interviewed me about both the recall and the encryption issue.   She said it all depends upon her boss as to what makes the cut as far as info they use in the story, but that she'd try to include at least a mention of the encryption issue since (as I told her) it is frustrating and so many patients want the freedom to easily see their own CPAP data and feel it is their right to have easy access to it. 

We'll see what happens.  

[Gideon]

Nice!!!

[SuperSleeper]

Forgot to mention that this was due to the physical US Postal Service letter I sent to them, not the email or voice mail.  Not sure why the snail mail letter worked, but it did.

I asked her when we should expect the story to be aired, and she said she had no clue, she's just the researcher.  

[Sleeprider]

I don't see much of CBS, NBC, ABC or other MSM these days, but if you find out when something might air, I hope to see a heads-up.

[Sonno]

I would suggest finding and publishing the contacts including physical mail address of the global CEO's and VP marketing of the major companies. Messages sent to the customer care addresses are far less likely to even be noticed. A short 2 paragraph letter to those persons will be impactful..they only need to see 4-5 before they realize its a bad idea. It is also not impossible to find their email addresses.

[verysincere]

I just today learned of the data encryption threat---and I immediately sent an email to RESMED, the manufacturer of my AirCurve BIPAP.  I will send a postal letter as well.

Thanks for bringing this matter to our attention.

[Gideon]

The Data Encryption has occurred on the Dreamstation 2, not on ResMed products.

[SuperSleeper]

Although the encryption is only on Philips DreamStation 2 machines right now, we've asked folks to contact all major CPAP manufacturers and voice their concern that no other companies lock out patients from their own data as well, so that this doesn't become a trend with other companies.