Thursday, March 11, 2010

Patient "Unadvocate" Lays Siege to sanofi-aventis VOICES Facebook Page. Where's S-A's Social Media VOICE?

Shirley Ledlie, aka "Ann Adams", "Julie Kahn", "Jasper Boon", and who-knows-how-many-more-phony-FB-aliases -- the patient who claims sanofi-aventis (S-A) mislead her about the side effects of cancer drug Taxotere (see "sanofi aventis Feels the Social Media Pain. But Is It Authentic?") -- is laying siege to S-A's VOICES Facebook page. Maybe some of these other people are real friends of Shirley and not just fake FB accounts. Only Shirley knows for sure. She has recruited at least one real person-- her daughter -- to post for her:
"Hello John," Shirley posted to my FB Wall yesterday, "just to tell you your freind (sic) was right. The SA voices is the real deal. I posted and the same day my post had vanished and i was blocked. So i posted again and within 5 mins my other name was blocked and removed. I think they have someone sitting there waiting for me - so my daughter is going to post for me while i open another account."
Today, the VOICES page is flooded with messages from Shirley et al similar to this one posted by "Julie Kahn":
"If your company is typical of the blinkered attitude that big drug companies take when faced with genuine grievances from the poor people that have suffered by using your products - well no wonder that intelligent people are so cynical about the merits of the huge pharmaceutical machine.

"Just because things test fine on the poor animals that are... See More... See more used does not mean that humans will also do well on them. You need to modify certain things with Taxotere and you should be falling on your knees thanking some of these women who have information that will help you. Surely feedback like theirs is vital to your organisation. If you truly cared about improving people's lives through your product you would contact these women and find out about their stories - not just delete their posts and pretend that all is fine in the Sanofi-Aventis garden"
You can find all the posts by visiting the VOICES FB page, but in case they are removed by S-A, I've collected them here.

The VOICES FB page is a legit S-A page, which focuses on support of Deep Vein Thrombosis (DVT) prevention and awareness. [CORR: This S-A FB page is NOT focused on DVT. It's more vague than that: it's a corporate communications effort to "..[e]mpower employees, retirees, friends, families and communities to educate, engage, and mobilize with our grassroots network as we focus on healthcare industry priorities." DVT was just mentioned as one of these priorities in a post to the Wall]. In any case, this is an unbranded site. VOICES is an acronym for Vitalize, Organize, Involve, Communicate, Educate, Serve.

This attack smells to me like an organized campaign designed by professional PR people who might be employed by a law firm representing Shirley in a current or planned lawsuit against S-A. I asked Shirley:
"Don't you think you are going too far? While you may have a legitimate issue with S-A, is flooding its FB page ... (VOICES) ethical on your part? I suppose you have a lawsuit against S-A brewing. If so, why don't you reveal that in your posts? Let me know -- I am blogging now!"
She responded almost immediately: "Hi John, no lawsuit that we know of. They refuse to answer my registered posted letter and emails so............"

Probably the papers have not yet been served, therefore no "lawsuit"!

Where's the Terms of Use Policy?
In any case, S-A has made a faux pas and has NOT taken its own advice about posting a Terms of Use policy on its VOICES Facebook page. In comments to the FDA, S-A stated that
"It is advisable for company sites to include clearly-stated Terms of Use ... For unbranded (non-promotional) sites, such as those devoted to disease awareness, sanofi-aventis recommends the following Term of use:

'This site is not intended as a forum for discussing specific products or other treatments. It's best to talk to your doctor about specific treatments. You may want to contact our Medical Information Department for product specific questions at 1-800-xxx-xxxx.'"
I searched the VOICES FB page and could not find any Terms of Use statement.

Where is S-A's Social Media VOICE?
S-A sure is getting a lesson on how to handle social media communications! What it needs to do quickly is to get vitalized, organize its response, involve its legal and PR people, communicate with Shirley, and educate themselves about social media so that they better serve their FB community!

P.S. I was just informed that all the posts I mentioned are now gone from the VOICES FB page. I, however, still find the comments posted to the site's Wall. In case you think I made all this up, I took a screen shot of the top few posts this morning. Here it is:

As I mentioned above, you can find all the posts copied here.


  1. I noticed that the page has no house rules or T' and C's and they did allow people to comment on discussions and post to the WALL without all this....all of which I would never recommend a Pharmaco does.

  2. Interesting, what about that organization the person claims is researching the hairloss stats in France? is that real?

    I don't do FB, just my blog, and have NO affiliation with this person, as an FYI since I am linked into this for finding that article and leaving a comment here with the link, I feel compelled to give myself a disclaimer!

  3. Hello again John. Apart from Ann adams they are friends off my FB page so all real.
    I am very flattered that you think i am a professional PR ! very flattered. maybe someone would like to hire me. You see John i have been lobbying about this subject and against SA for almost 4 years now. I have had various medical bodies trying to fob me off but i have never given up in my belief that every patient should be told the facts about the treatment they are recieving. So when a pharma keeps data hushed up, preventing women from making a decision about drugs that are being pumped around their bodies, yes - i will keep on and on and on.
    You have the proof John, SA havent spoken, they want it all to blow over and they can get on with thier dirty secret.
    The survey you mention Stephany (if i have understood you correctly) is being carried out by a team of oncologists and consultants etc in north west France and will be finished shortly. If you dought anything their names are printed at the top of the page so you could always google them.

  4. Anonymous2:59 PM

    First, I'm a little surprised that Shirley, Ann, Jasper, Melissa or Julie aren't a little more appreciative that they are ALIVE! And, alive due to a drug they are now attempting to smear.

    Second, when did people get so vain that hair was more important than life?

    Third, alopecia IS part of the Taxotere label It's unfortunate that Ann, Shirley, or whoever she is today, had a physician that didn't fully explain the risks before starting her chemotherapy. Sounds like the beef is with the doctor.

    Finally, this whole issue is the product of social media "experts" and bloggers not doing their homework and extremely suspect "patients" out to find fault where there is none.

  5. Dear anonymous,

    What do you man by "social media 'experts' and bloggers not doing their homework"?

    If you are referring to me and the fact that hair loss is part of the labeling, I did do my homework and realize that this side effect IS mentioned in the PI. Of course, patients don't read the PI and depend, as you say, om the physician telling them the risks. It may be that the physician did not know about "permanent" hair loss as opposed to "alopecia." If you look up the definition of the latter, you will see nothing about "permanent" being part of it -- it may be permanent or it may be temporary. If I a doctor and see "alopecia" on the label for a cancer drug, I immediately assume it is temporary as is often the case. What S-A did not tell doctors may be the number of cases where it is "permanent." That is the complaint Shirley has, as far as I understand it.

  6. There is no mention that permanent hair loss is 'common and frequent' on any of their info - so you might want to read again! The classification for common and frequent, if you dont know, is between 0.01% and 10%, so were is it mentioned ? no its not. As its running at around 3% acording to SA that puts it in this classification.BUT the experts, not SA, the people that actually deal with the patients and report these xases believe its higher than 6% and there are case studies that say 6.3%

  7. Shirley,

    Where does S-A mention the figure 3% for permanent hair loss? And where did you get the physician number of 6.3%?

  8. So John, they cant have it both ways. They say its very rare - so that means less than 0.01%, when all studies show nothing like that.
    The study in France is the interesting one.
    Also there is a doctor in Madris that carried out a case study years ago (so it was known by SA along time ago)on around 50 patients. Non grew their hair back even up to 7 years - he tried to get this study printed in a medical journal and they refused.

  9. I genuinely find this article interesting as I am reviewing the different approach taken by pharmacos to Social Media! Have just tweeted it!


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