Recently, Sanofi-Aventis has been having problems with its VOICES Facebook page (see "Disgruntled Patient Shuts Down sanofi-aventis Facebook Page"). I previously suggested S-A made a faux pas because it did NOT take its own advice about posting a Terms of Use policy on its VOICES Facebook page (see "Patient "Unadvocate" Lays Siege to sanofi-aventis VOICES Facebook Page. Where's S-A's Social Media VOICE?"). I guess someone at S-A read my post because the site now has a disclaimer, which says, in part:
"This page is not intended as a forum for discussing sanofi-aventis’ or other companies products including the reporting of side effects associated with the use of prescription drugs. As such, Postings that contain product discussions may be removed by sanofi-aventis."
The VOICES Wall is now back up with posts and is accepting comments, including the following from Shirey, aka the "disgruntled patient":
"I have just read your disclaimer... Not intended is not the same as not allowed in my eyes."
Shirley's friends are also posting comments like "if this site is not meant for discussions why call it "voices" suggests to me you dont like hearing what is written!!!!!!!!!!"
It will be interesting to see how this all plays out and who will win this "Pharma Social Media Standoff!"
...and while this stand-off continues, huge damage continues to be done to sanofi's - and by association Pharma's in general - credibility and willingness to participate in online conversation with patients in future.
ReplyDeleteIn the end, nobody wins. Well done to everyone concerned...
Sanofi could very easily turn it around to be in their favour couldnt they.
ReplyDeleteShirley - yes, Sanofi could indeed have handled this whole situation much better. I don't believe anyone is disputing that.
ReplyDeleteMy point is that your personal dispute with Sanofi may well have significant repercussions for healthcare providers and patients in general. Is that really want you want?
hi shirley - i am very glad that you are a survivor and wish you many blessings for your health. i am sorry about your loss of hair and understand how that is difficult to deal with. can i ask a clarifying question? if your physician or s-a had made it clear to you that this was a possible side effect, would you not be disgruntled now? i am trying to understand if your source of disgruntlement is because they did not manage your expectations, and if they had, if you would not be engaging in the course of actions that you are today. also, if i may ask, had you known the risk up front, would you have proceeded with the therapy? i believe that these are important distinctions that many people are overlooking and that the industry can learn from. thank you in advance for your answers. i wish you continued success in beating cancer!!!
ReplyDeleteHow could they do that, Shirley?
ReplyDeleteShirley, I am so sorry for what you have had to go through, but while making side effect potentials transparent is important, do you think you might be scaring off potential patients who could benefit from this drug?
ReplyDeletePhysicians NOT explaining the drug side effects so patients don't get too scared to take it? Seriously? I don't want that doctor. Bottom line: He/she who prescribes treatment is responsible for knowing and explaining what that treatment may do. End. Of. Story.
ReplyDeleteRespect to Shirley for sticking to her guns.
ReplyDelete