"Ann Adams" posted this message to S-A's Facebook Wall: "Good morning Sanofi, i had your drug Taxotere and as you can see from me photo this is what my scalp looks like 4 years later. Do you have any comment to make?" Her bald head photo appears on S-A's Facebook page as well. See the screen shot below:
I clicked on "Ann Adams" to learn more about her and found her Facebook page that had one message on the Wall: "This is my disfigurment from your drug Taxotere, the drug you kept this adverse side effect secret. Why dont you want to answer my letters and emails?"
I assume this was a message she had also posted on S-A'a page, but I can't find it there.
Did S-A "block" this post?
Ann says: "Its very unpleasant of you Sanofi to have an unhappy customer blocked from your page."
Is "Ann" authentic or just a scam perpetrated by a disgruntled S-A employee or a competitor?
On the Internet nobody knows!
UPDATE: See comment to this post, which claims that "Ann Adams" is a real person. That comment cited an article in which "Ann Adams" was quoted.
Sanofi Loses SM Face Over Hair Loss PR Debacle
I also received a note from an anonymous friend who said:
"'Ann Adams' would appear to be a pseudonym for Shirley Ledlie (see Jim Edwards' post from Saturday), given the identical scalp images. I would hypothesize, given the accusations of blocking, that Ledlie's posts were removed and that she subsequently opened up a pseudonymous Facebook account as 'Ann Adams' to repost them...and scold s-a for blocking her in the first place.
"...this is the sort of PR event that any company (especially a company already aware of organized criticism) should have been prepared in advance to respond to...and it represents the degree to which pharma misunderstands social media (as most other industries did 3-5 years ago) in jumping straight into 'push' mode (e.g., FB 'fan' page) without first understanding in depth the conversation that's already going on and the motivations, needs, and behavior patterns of those already engaged in the conversation."
UPDATE TO UPDATE:
It looks like we may have been "pfooled" by a phony, pfishy sanofi aventis FB page!
See comments to this post. Also, the URL seems "pfishy": http://www.facebook.com/sanofiaventis0 - the final "0" means that "sanofiaventis" was already taken (probably by S-A). Did Shirley Ledlie, aka "Ann Adams", create phony S-A FB page to post her complaints & embarrass S-A?
She's not a competitor, she is a real person who suffered permanent damage from a drug:
ReplyDeletehttp://www.connexionfrance.com/baldness-cancer-taxotere-sanofi-aventis-cancer-support-group-10508-news-article.html
Had I been told I would be left disfigured I would have asked for a different chemo drug. Oncologists are still telling women that their hair will grow back.”
Ms Adams set up an online support group two years ago “to raise awareness that this can happen and there’s somewhere to turn to” and the group now has English-speaking members around the world.
“People perhaps think they are the only one,” she says. “It’s great when you're in touch with other people. We get mails coming in virtually every day saying: I don’t know what I’d do without this group.”
Ms Adams says her consultant knows of 17 similar cases in Brittany and a formal complaint is being lodged with the drug’s producer, pharmaceutical giant Sanofi Aventis. Wigs cost about e600 each and only last nine or 10 months.
“I have been disfigured by this drug and lumbered with a financial burden. There is no price on my distress,” she says.
Connexion asked Sanofi Aventis about a link between Taxotere and permanent baldness, but the company did not reply.
A website for the group is due to launch at www.aheadofourtime.org but until then you can send an introductory email to this address: taxotears@googlegroups.com
Stephany,
ReplyDeleteThanks for that reference to Ann's story.
And one of her blog(s):
ReplyDeletehttp://taxoterehairloss.blogspot.com/
This is not about money?
Although I feel for Ms. Adams, the Facebook page in question is not an official sanofi-aventis page.
ReplyDeleteThough I have no personal interest in this story, other than patient advocacy topic---I doubt the group is attempting to embarrass a drug company, I am pretty sure the word lawsuit is more appropriate!
ReplyDeleteI am Shirley Ledlie and Ann Adams. I was blocked by the phoney FB page for Sanofi, so created another account as i wont be silenced.
ReplyDeleteYou can rest assure that i have never worked for SA !!! i am a disgruntled (to put it mildy) patient who has been left disfigured by their drug. I have spent the last 3 years trying to be heard and have had the door slammed in my face on all occasions. Things are now happening. Women have the right to know the adverse side effects and it is in the patients charter that we have the right to understand and accept our treatment. How can we make a risk assesment if we are not told the permanent side effects possible. Oncologists dont know about it because SA keep it quiet - its as simple as that. I am sure everyone will agree that we, as patients, have the right to know about ther possible outcome of our treatments no matter what they are for.
Not sure if this is truly a real person in the picture or not but i don't see why someone will bother to write all this stuff and complain if he didn't really suffer from it.
ReplyDelete