In a previous post I documented how Ms. Ledlie -- a cancer survivor who had permanent hair loss after taking Taxotere, a drug marketed by sanofi-aventis (S-A) -- was laying siege to S-A's VOICES Facebook page (see "Patient 'Unadvocate' Lays Siege to sanofi-aventis VOICES Facebook Page. Where's S-A's Social Media VOICE?")
In a quick visit to the VOICES page, I found that all the posts to the Wall had been deleted and have been replaced by this statement: "sanofi-aventis VOICES has no recent posts." No further comments can be posted to the VOICES Wall. It appears that S-A could not stand up to the onslaught waged by Ledlie's solitary "voice" and just decided to call it quits!
A precedent has been set by this experience, which does not bode well for the future of pharma social media.
"So you think it was terrible what i did to SA facebook page do you?," said Ms. Ledlie to Social Media Intern (SMI), who actually expressed no opinion on the matter. "Well you should try living with the disfiguration they have caused me! Thats terrible.
"You want transparancy? so do i," continued Ms Ledlie. "I want SA to be transparent with the data they recieve. If you think SA did such a bad job with FB maybe you should contact Madeline Malia, the director of communication for SA. You can tell her what a rubbish job she did dealing with my FB attack.
"Maybe you could use my skills in finding the weaknesses," finished Ledlie in her comments to Social Media Intern.
"I have no idea why Ms. Ledlie thinks I think what she is doing to S-A is terrible," said SMI in a personal communication. "But I welcome her quixotic campaign for pharma transparency. All she has achieved, however, is a complete blackout!"
UPDATE: S-A has re-opened its FB Wall page for posting: Sanofi-Aventis Updates FB Site with Disclaimer, But Shirley Still Posting About Her Side Effects.
uniting such patients and teaching them how to behave might do a good job!
ReplyDeleteWhat happened to a well-formed SoMe policy to handle someone other than the FDA?
ReplyDeleteBill,
ReplyDeletePrecisely the point I made in my previous post about the "patient unadvocate."
I think Ms. Ledlie has achieved rather more than that. I don't think she's been tilting at windmills: I think she has provided us a with a compelling example of what happens when pharma companies want to maintain a presence on a social media platform whilst playing 'see no evil, hear no evil, speak no evil'.
ReplyDeleteI say good for Ms. Ledlie. S-A sleep-walked into this.
Permanent hair loss sucks but it is better then being dead.
ReplyDeleteAs a cancer survivor, I'm embarrassed by her actions and her attitude. Yes, I lost my hair, too, and it's grown back. I haven't had to deal with permanent hair loss, but the risks of Chemotherapy are well-documented.
ReplyDeleteI'd place some accountability into her own hands for not researching everything about the drug before agreeing to keep it as part of her regimen.
I may have permanent Cardiovascular and Pulmonary side effects - but I AM ALIVE!
As for being proud of shutting down Sanofi-Aventis, it is a sad day for the advances we were making in Pharmaceutical Social Media.
As with all adversity, I hope this provides us much reflection on how to have a well-though-out plan and to advance beyond this.
Dana,
ReplyDeleteThanks for your comments.
Well, as a person interested in patient advocacy as well as pharma transparency, truth and ethics, this has taken an interesting turn.
ReplyDeleteI believe she has achieved more than a "black out" because this coverage is far more than she ever would have had on the S-A FB page if it wasn't highlighted here.
It has opened up a forum of discussion on a large topic, from side effects of drugs, data, and the "new" social network platform that pharma, the FDA et al are attempting to enter.
If anything, one can learn that there are patients that have a lot to say, whether anyone or all agree with the person or not, kudos to anyone willing to have a voice, and speak up, and entering the pharma world and speaking out against it in any way, takes guts, we know that.
Frankly, I will never use a pharma FB or Twitter page to imagine I was getting information other than self-promotion of their drug, what else are they in business for?
It doesn't surprise me they want "voices" that only positively spin their product!
Again, I have found this interesting, to watch the out come and read reactions. I do believe pharma could learn from the incident, if anything to have in place exactly what they will allow on their pages....most likely no comments would keep them from dealing with the public.
Dana, i am sorry that you feel embarrassed by my actions. From your comments you obviously havent read (understood) anything i have been saying.
ReplyDeleteI am trying to get SA to own up to the problem of permanent hairloss caused by their drug. So your comment ' but the risks of chemo are well documented'i only wish they were. You see Dana there is no meantion anywere that there is a common and frequent occurance of permanent hairloss. They hide the reported cases. Every patient has the right to know the possible (facts as in %)adverse side effects and SA are not doing this.
I hope i have explained it clearly enough for you now Dana.
There are other chemo's ie Taxol which are as good BUT they are not made by SA. I have certainly never sugested anyone shouldnt have the drug - so comments such as better no hair than dead - absolutly yes i agree and have never said anything to warrent this remark. Again its when people dont read properly.
As for the comments from the Social Media Intern, i read the advert/cartoon on this blog where you apparantly were saying how terrible it was. I assumed wrong as it must of been John's comments and not yours. Sorry about that i misunderstood.
So, basicly i want SA to stop hushing up data, give out the info on adverse side effects so patients can rightfully make their own risk assesment.
SA continue to ignore my letters etc so what am i supposed to do? Oh yes, i did ask them 3 years ago if they would like to buy my wigs for me and as expected they declined. They said i was the 3rd or 4th person in the world to have this problem (yeah right) so i replied in that case it wouldnt cost them much. No reply.
Of course, Sanofi's drug saved Shirley's life. A pity...
ReplyDeleteShirley's point is that it's better to have your hair and die than lose your hair and live. Pretty sad logic. Naturally, Shirley's little jihad will actually have the exact opposite effect. Shirley wants Sanofi (and other companies) to be more transparent, but when confronted with mis-guided ignorance, what company will want to?
As another survivor, I too am embarassed beyond belief. Of course, you'll always find a few down there in gutter.
There are no winners here--aside from the obvious, thankful fact Shirley is kicking/has kicked cancer's ass. Worse possible outcome is if both parties end up silenced in the process.
ReplyDeleteShutting down the sanofi-aventis site for comments does nothing for the patient community at large. It forced the Company to go radio silent when it should be turning up the volume.
At my safe distance, it's fairly obvious the Company needs a social media policy allowing for engagement with all consumers—disgruntled or not—displaying transparency while fostering engagement. Maybe "going dark" gives the Company time to regroup and turn the lights back on for future, two-way exchanges of information.
Simultaneously, if permanent hair loss is a common side effect, Shirley is left to yell into the wind. Such shouting doesn't get the message out to patients considering using Taxotere over another treatment. It marginalizes someone who might have been a patient advocate if properly engaged.
In this case, "two wrongs don't make a right." Nobody wins in a standoff, but hopefully there isn't too much water under the bridge for that to be our outcome.
Marian
twitter.com/mariancutler
Pharm Aid -so you know taxotere saved my life do you? you are a clever LITTLE man arent you - even my oncologist doesnt know that.
ReplyDeleteYou think that 'Shirley's point is that it's better to have your hair and die than lose your hair and live.'means the same as 'basicly i want SA to stop hushing up data, give out the info on adverse side effects so patients can rightfully make their own risk assesment' so your another one that doesnt actually reads anything.
You think its a pity my life was saved....WOW, and you are 'too am embarassed beyond belief' dont you think your are being a bit of a drama queen dear.
As for the gutter -with your remarks do you honestly expect anyone to take you seriously.
I think you speak with a fork tongue. In your own blog you say patients should take control over their own treatment. Hummmmmm how can anyone do that if the truth/data is being hidden from them you idiot.
Derrrrrrrrrrr
Shirley, Pharm Aid, et al,
ReplyDeleteOK, I've allowed "gutter," "ignorance," and "idiot" to be posted in comments. That will be all the name calling I will allow. Thanks.
And the "evidence" that the data was "hidden" is exactly where? Surely you have some fact to prove your claims of criminal behavior.
ReplyDeleteFeel free to post it on your website. We're all anxious to see the smoking gun...
You'll have to ask Shirley about the evidence. She's the one making the accusations, although maybe some investigative reporters should look into it.
ReplyDeleteDont you worry about it Pharm Aid, the evidence is in all the studies that have been carried out, all the hundreds of people that are in these studies, in all the pateints that havent had their hair return, the REAL % that puts it into the classification of 'common and frequent' but SA do not think they have to declare it this even though the stats says its common and frequent. Why do they omit it from their product info and why do they tell everyone that asks about it thats its VERY RARE when its its not less than 0.01%.
ReplyDeleteThey say they are 'unable' to reveal how many reported cases there has been? Why is that then? If its 'very rare' surely they would like to shut me up by telling me. Yes, i have it all in print.
I want the TRUE figures revealed, i want it on their product info and on their websites, i want them to admit that it doesn happen in 6% (or what the true % is), i want it labled as a common and frequent adverse side effect. I want every oncologist to know so they can tell their next pateint suffering with breast cancer that no their hair might never return and to be able to give them the %.
I want SA to stop telling individual patients that contact them that'its extremely rare' or 'you are only the 3rd or 4th person in the world this has happened to' which was what they said to my oncologist when he reported me- this is what he told me at the time.
Its all about patients rights, the right to say yes or no to a treatment, to make your own risk assesment. I can back up everything i have said pharm aid make no mistake. I have it all, even copies of everything in a friends house just to be on the safe side.
Why do you think they are silent? they have no idea what to say to me. Unless they decide to sue me for something, i dont have any money so they can if they want, i would then have my day in court.
Women that had a good prognosis, are being kept in the dark about a drug that is disfiguring them, permanently, its having a devasting effect on their lives when they could have had the CHOICE of another drug but unfornatly not one that was made by SA.
So Pharm aid, i have no idea why you think its a pity my life was saved (it could of been the FEC but you say you KNOW it was the taxotere) and i was deeply offended by your posting. Why you can think that about someone that you have never even met is beyond me.
http://money.ninemsn.com.au/article.aspx?id=1027933
ReplyDelete"Australia Leads the World in Funding Treatment for Early-stage Breast Cancer
- Australia will be the first country in the world to fund Taxotere in combination with cyclophosphamide for women with early-stage breast cancer,* as of 1 April[1] -
Australia - 16 March 2010 - Sanofi-aventis announced today that all Australian women* will be able to access government funded Taxotere (docetaxel) in combination with cyclophosphamide,[1] a chemotherapy combination shown to benefit women's chances of surviving early-stage breast cancer.[2],[3] This follows a government decision to include Taxotere in combination with cyclophosphamide for this group of women on the Pharmaceutical Benefits Scheme (PBS) as of 1 April 2010."
"Like all other chemotherapy medications that treat cancer, Taxotere may have side effects. Common side effects may include infections, fluid retention, muscle pain or tenderness, joint pain, hair loss and tiredness.[5]
"Not all chemotherapy treatments are suitable for everyone, and different treatments affect individual women in different ways. It is important that women who are commencing chemotherapy treatment discuss the potential side effects and how these can be managed with their doctor," said Dr Chan."
My reaction to all of this, is to focus on the patient informed consent via the doctor treatment team.
1. Was the patient well-informed via all treatment team members, told all risks and possible side effects?
2. If there is question of ethics and drug promotion by S-A, then someone needs to research fine print details of the company and it's marketing tactics.
Gaining a country government deal for the drug surely does reflect an aggressive drug promotion.
I am curious, with regard to Shirley...your blog using the name 'Ann Adams', should be changed to your real name, as a patient advocate you need to gain credibility and it makes it easier when the name matches up with the story.
As far as wanting S-A to fund wigs, there is no way to do something that simple in this legal world, unless brought into a legal arena, a large drug company doesn't do things like that, sorry to say, I'd be doubtful if they listened at all until served with a legal action.
One thing I do not have is any sympathy for large corportations having to tweak a social networking page because a patient left comments there they didn't like.
I have compassion for human beings, their plights, but come on, let's stop fueling this fire about poor S-A "suffering" a FB snafu. lol seriously sounds ridiculous.
Interesting comments here!
btw I'm having fun tracking this myself:
SANOFI TECHNIQUES
Domain SANOFI-SYNTHELABO.COM
City -
Region -
Country FRANCE
I've left out the IP address, but interesting how they are interested in my dog's blog now!
And still no mention of the common and frequent side effect of permanent alopecia !!!!
ReplyDeleteWhen i asked them for wigs they supposidly told my oncologist that i was the 3rd or 4th women in the world for thsi to happend too. If the side effect wasnt bad enough they were trying to make me believe i was some kind of freak too!
I agree totaly, they wouldnt have listened to what i was telling them in my ignored letters and emails.
I bet someone somewhere is listening now though.
ps - i only used Ann Adams when they blocked my real name and couldnt post. I seem to be able to use it today so they are letting me have a little say on their comments at the moment.
ReplyDeleteShirley's words and her actions do not match up. What is her goal by doing this? She says it's to make s-a stop being so silent...that they will come out with all of this info to show how they wronged her.
ReplyDeleteWell, if that's the case, Shirley should realize that her actions is creating the EXACT opposite of what she supposedly wants. Shirley has mentioned shutting down other S-A sites...she seems to treat it as a badge of honor. How will a pharma company ever OPEN UP when you try to SHUT THEM DOWN? It's an oxymoron...you want them to start being more open and honest...but you try to accomplish it by shutting these lines of communication down.
There is no doubt that Shirley has a right to be angry, but the method in which she has done so really is chipping away at her credibility. People who want to bring upon change bring forwards solutions...people who want attention, money or some self-serving agenda try to relish in the problem. Whenever someone brings up the fact the drug SAVED HER LIFE, it's quickly thrown to the side. I, for one, would rather be alive with limited hair than dead with a full head of locks.
It's like you vilified someone who saved you from falling off a cliff, then vehemently attack them because they accidentally tore your watch off in the process of saving you.
Shirley has yet to bring forwards a smoking gun, she has claimed in other areas her goal is to "terrorize" S-A. Why would you expect S-A to work with you? Is "terrorizing" a mature, productive way to bring about change? I don't think so.
A wonderful opportunity to create some good nullified by a self-serving hidden agenda. Personally, I think she's after lotsa $$$, but if she had a case, I think there'd be a lawsuit by now.
Having worked for S-A I am not surprised that they do not like negative exposure about drug side effects and that there response to an attack is to shut down their site... Ketek, Acomplia, Rimonabant, now taxotere. This is not a company that enjoys openness, even within the organization. I was hoping for them that the new CEO would change this culture but I guess it takes a while to percolate through the ranks. Now they have well and truly shot themselves in the foot. Why don't they simply address the question honestly and with appropriate data?
ReplyDeleteFrom what I can see on the FDA website (http://www.accessdata.fda.gov/drugsatfda_docs/label/2006/020449s036lbl.pdf) alopecia as a side effect ranges from 56% of patients when used as a monotherapy up to 97% in combined therapies though it does not say whether this is temporary or not. There is one table with "grade 3" alopecia at less than 1% but I have no idea what this grade means? Checking the Meddra terminology there is no term for permanent alopecia so there can be no post marketing reporting of this condition in the USA. Perhaps this should be added to the MedDra terminology?
In the end there are people who suffer serious side effects from drugs. It is unfortunately unavoidable due to the complexity of the human immune system and physiology. Adverse drug reactions can kill or permanently disfigure but usually it is pretty rare. Even common treatments like acetominophen kill a certain number of people each year. Shirley, I am sorry you suffered from this it is a personal tragedy but the drug has also helped many more people than it has permanently scarred. Until hard data is available it is very difficult to know how many people the drug affects this way. Ask yourself this question: At what % of patients suffering these side effects would you have decided not to take the drug? 0.5%? 5%? 10%? Even if you had the data would it have made a difference in your decision to take the drug at the time you were diagnosed with cancer?
ARRGG typos:
ReplyDeletethere = their
Acomplia, Rimonabant = Acomplia/Rimonabant
Asi como se hace la analogia de la lucha del quijote contra los molinos de viento, de Cervantes, podiamos decir que decidir subir un sitio es como Shakesperae diria ser o no ser la equivalesncia escuchar o no escuchar, asi es el internet.
ReplyDeleteDiscussion Tab on Voices still contains some negative posts from an hour ago (we are 3/31/10 @ 9 AM), even though Sanofi posted a message not to do this on 3/26/10
ReplyDeleteAnyone who thinks if Shirley had not confronted Sanofi they would willingly be more transparent about their drugs, has her/his head stuck in the sand. Let's face it, any pharmaceutical company joining FB either lives in a dream world or is just plain dull-witted if they thought this would not be a welcome mat for people's issues with their drugs.
ReplyDeleteI think Shirley did accomplish something here. More people heard her than had before and are talking about it. I would also say she gave Sanovi a wake-up call that a presence on FB was not going to be the same experience as the non-interactive commercials on TV and in magazines where they can go unchallenged.
I suggest that those who criticize Shirley first read the drug monograph before assuming that she is complaining about something she should have expected. It's inappropriate to assume that other people's experiences mirror your own.
It's hard to believe that a huge company decided to enter Social Media - which is about conversations - without the plan how to deal with different situations.
ReplyDeleteSanofi-Aventis had a chance to gain trust with their Facebook page if they reacted showing that they respect the negative opinion and they care for the patient.
It's very interesting to analyse the report cited by eMarketer http://www.emarketer.com/Articles/Print.aspx?1007863 which shows the most important aspects of gaining trust within SM - not surprisingly the most important one is the open communication i.e. allowing both positive & negative comments; of course the latter ones migh be moderated if inappropriate, but never censored
Hi John,
ReplyDeleteDO you (or any of your readers) know if this type of situation ever happened to another large pharma company? It seems odd that only s-a would need to deal with something like this...
I'm doing some research on the weight of a consumers voice in social media outlets, specifically in pharma social media, and if this has ever happened to another company, it would help to know it. Thanks!
As for being proud of shutting down Sanofi-Aventis, it is a sad day for the advances we were making in Pharmaceutical Social Media.
ReplyDeleteI was hoping for them that the new CEO would change this culture but I guess it takes a while to percolate through the ranks.
Well, I would also say she gave Sanovi a wake-up call that a presence on FB was not going to be the same experience as the non-interactive commercials on TV and in magazines where they can go unchallenged, thanx.
ReplyDeleteThere are and were equally effective drugs at the time of the treatment that do not have the side effect of permanent hair loss. Few oncologist were not aware of the side effect at the time either.
ReplyDeleteI think that : It's like you vilified someone who saved you from falling off a cliff, then vehemently attack them because they accidentally tore your watch off in the process of saving you. I have read this.
ReplyDeleteI agree with your Opinion, As Facebook is not a good place for pharmacology site's marketing, As you mentioned the hair loss case. So i appreciate your effort.
ReplyDeleteWell, I would also say she gave Sanovi a wake-up call that a presence on FB was not going to be the same experience as the non-interactive commercials on TV and in magazines where they can go unchallenged,Thank.
ReplyDeleteAustin Remodeling Company
Well, I would also say she gave Sanovi a wake-up call that a presence on FB was not going to be the same experience as the non-interactive commercials on TV and in magazines where they can go unchallenged.
ReplyDeleteReallly this experience for you might be very terrible on FB, facebook never allow pharmaceutical site after a limit. so that maihgt be the reason of deleting all the post.
ReplyDeletehttp://www.linkedin.com/company/play-games24x7-private-limited
I must be missing something here but what I do not understand is why attack Sanofi's page when the page allowed comments from a person who could post notice for others about problems she encountered with a Sanofi drug?
ReplyDeleteAlso, Sanofi have other drugs and I presume that other people would want to know about those issues (for better or worse).
It seems to me that this person is very angry and so self absorbed within her anger that she can justify her actions no matter what those actions may mean to others.
Very sad, indeed...