The Importance of Having Data

On the Sleep Apnea Support Forum this week, I’ve been watching and responding to a thread called  “severe sleep apnea patients!! Need help” located here.   A poster named “Sister” posted that she was empowered by what she was reading in the forum, and went exploring to find out if the Resmed Elite she’d had since 2006 (four years!) was data capable.  To her surprise, it WAS data capable, although her DME provider tried to deny that fact.

The DME provider tried to tell her that accessing the data would void her warranty.  What a load of hooey!  First, accessing data does NOT void any warranty.  Secondly, these machines only carry a two year warranty, already long-expired.  Thirdly, Sister was only trying to access patient data anyway, not clinician’s data.  There was no risk of her accidentally changing the settings or causing any problems to the machine.  

The real shame of this perfidy is the fact that once Sister did access the data she learned that her AHI was 17.5.  It should be well below 5.0.  So this means that for who knows how long, she has been getting very poor therapy.  I would also assume that there has been no follow-up from her sleep lab physician or DME in the past four years, because clearly nobody looked at the data and noticed there was a problem. 

She should have been instructed from the beginning how to check her data, so that when her AHI’s crept up to an unacceptable level (assuming they were ever within an acceptable level), she could have consulted with her sleep professionals to improve her treatment.  Instead, for as much as four years, she has been receiving sub-optimal therapy.  On CPAP, she was still experiencing significant OSA.  

This really makes my blood boil!  The insurance company may have looked at compliance data, but probably cared less if their investment of a few thousand dollars was EFFECTIVE for the patient.    The sleep lab that failed to follow-up enjoyed her money, but failed to make sure that the treatment worked for her and continued to work for her in the long term.  The DME has probably been enjoying her money for replacement supplies and the initial purchase, but they never made any effort to see if the treatment was working for her.  Perhaps  Mr. DME was too stupid to even realize that Sister’s machine was data capable (if he was smart, he could have charged for downloading the data to report to the sleep doc on a regular basis), rather than what he seems to be—a malicious liar who tried to thwart Sister’s efforts to take control of her own treatment. 

Folks, we on CPAP have to be our own advocates.  The reality is that WE are the only ones who care if we are getting effective treatment.   Clearly the insurance company, sleep professionals and DME don’t care unless it lines their pockets.   WE are the only ones harmed by ineffective treatment.  But without data, what can we do?    How can we know, and how can we advocate for ourselves? 

XPAP patients must have and use data capable machines!