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Drug Companies Lose Special Protection On Facebook
Hugh Pickens writes "Christian Torres writes that Facebook and the pharmaceutical industry have had an uneasy partnership in recent years and many drug companies didn't join the site until Facebook gave them a privilege that others do not have — blocking the public's ability to openly comment on a page Wall. But that's about to change when, starting Monday, most drug company pages will have to have open Walls. 'We think these policy changes support consistency for the Facebook Pages product and encourage an authentic dialogue between people and businesses on Facebook,' wrote Facebook in an email. AstraZeneca, which sells the antidepressant Seroquel, already shut down a page devoted to depression, Johnson & Johnson says it will close four of its pages, and other companies say they will monitor their pages more closely once the changes take effect. The industry is concerned that users might write about bad side effects, promote off-label use or make inappropriate statements about a product, and that the comments could raise concerns from government regulators."
Surely their commercial advertising budgets (which are freaking astronomical and reedonkulous) could afford an intern for this.
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Christian Torres writes that Facebook and the pharmaceutical industry have had an uneasy partnership in recent years and many drug companies didn't join the site until Facebook gave them a privilege that others do not have — blocking the public's ability to openly comment on a page Wall.
Uh, so whoever did the investigative journalism for this piece needs to go back to Webelos and get their fact checking merit badge. All walls can be restricted to only posts by the owner of the wall on Facebook. In fact, it is so uncommon for the wall to be open to fan postings that I had to turn to Mystery Science Theater 3000 for an example of open posting. Take the current DVD distributor for MST3K, Shout Factory as an example of a non-pharmaceutical company restricting me from complaining about the packaging on some of their DVD sets openly on their wall.
Every company does it, it's not "special protection." I'm happy that big pharma is losing this option but frankly I'm wondering why anyone is allowed to open up a wall and the suppress public comments on their products. They should be proud of their products and they should engage their customers openly. You can block individual trolls but I'm shocked that their concern isn't bad publicity for their products from a few outliers but instead concern from government regulators! What? If you're giving them all your information about your drug's potential side effects, there shouldn't be any concern!
So looking at the drug they listed, Seroquel I see the user comments being actually very helpful. People talking about it losing its potency, people talking about switching on or off XR for better results. I'm sure that these comments have been weeded by some corporate automaton but, come on, these are customers helping other customers!
You know what happens when you don't put up a main page for a product? Tons and tons of hate pages. Government regulators don't notice these?
My work here is dung.
It looks like someone took you seriously.
So the companies are refusing to listen to their customers complaints when it could be valuable insight on how they could better improve the drug? Bravo, way to be respectful to your income.
I wouldn't be surprised if the lawyers at these drug companies were concerned that they would somehow be violating the medical privacy laws by allowing visibility of (potential) users of their product by other FB users. If you were to post on their wall that you had adverse side effects, and your boss saw that comment and took action because of concern for a medical condition the company had previously not known about, I'm sure some plaintiff's lawyer would try to hold the drug company liable for exposing that fact (even while the boss/employer was also clearly in the wrong).
The last time I wrote code, it was Morse
anyone say anything negative about drug companies. Think about it, they're NOT in the business of producing CURES... they make all their money on TREATMENTS. And the longer you have to take their treatment, the more money you're throwing at them.
I wonder if the FDA will ever realize they can completely turn off those pesky complaints by the people they supposedly work for, instead of just making them more difficult to see. (http://facebook.com/FDA and click 'Top Posts')
I'm not sure how this is any different to you telling your friends in the local pub about a drug you're being prescriped and having it get back to your boss that way. If it's private, don't share it in public, full stop. People should have (certainly by now, with all the slips in the past) zero expectation of privacy with regards to anything they post on Facebook.
I don't really understand the point of pharmaceutical companies even having Facebook pages. I get enough of their advertising shoved down my throat on TV every day, I certainly don't want to be friends with them on Facebook. As far as government regulations go, it's sad enough that these companies have to disable wall postings to suppress people from talking about things like negative side effects, but I find it even sadder if people think the only place to have these discussions is on Facebook pages in the first place.
I mean, what's the train of thought supposed to be, here? "Oh good, now that I can openly write on a pharmaceutical company's wall, I can finally let everyone know about these horrible side effects their medication caused for me. There was definitely no outlet for this prior to now, and it comes just in time, because these unreported side effects are so bad it almost certainly warrants a governmental investigation!"
I had my wall postings restricted to only myself and my friends, and when that worm was going around that posted itself on friends' walls I restricted wall posting further to only me. I don't know what the big deal is. Is this something different about a "page" or "group" as opposed to a "person"?
I'm not a lawyer, but...
The key phrase there is 'If you were to post...'. It can't be a HIPPA violation if the person voluntarily divulges the information themselves as the privacy regulations involve the actions of the healthcare provider, not the individual receiving care. That is, HIPPA protects people from having their medical information shared by the medical provider to third parties that do not have a medical necessity to provide care to know. In other words, your doctor can share relevant information about your medical history with your pharmacy without your specific instruction (e.g., other drugs you're taking, allergies, etc), but can't provide the same information to your spouse without specific instructions from you
Additionally, I doubt they would have any luck to start as they would have to somehow show there was an expectation of privacy on a public posting on Facebook.
What??? How are they violating laws when the patient is the one posting about their own use? What if I post on my own Wall? Are the drug companies liable then? What if I open a blog and post about my drug use? Can I then sue the drug company for violating my medical privacy?
Oh yeah, I also take prescription strength Allegra. OK, so now can I sue Slashdot for violating my medical privacy?
Having provided marketing support to a pharmaceutical company, bad publicity is not the main fear. Most prescription drugs these days don't actually "cure" anything. Seroquel does not "cure"depression, it treats symptoms. The pharmaceutical companies and the FDA regulators are both acutely aware of this. All of their marketing materials go through legal review to avoid using words like "cure." Having a post from John Q Public stating that "Thanks Seroquel, this cured my depression" on Seroquel's "Official Facebook Page" would be a significant legal problem.
Facebook also shared in the concern that legal liability could fall on them. Excerpts of people's medical histories would be posted. In the United States, HIPAA governs "how" medical information may be stored by third parties. Facebook would risk having to modify their infrastructure to maintain compliance.
Whether you believe "Big corporations" are malevolent or not, them taking preemptive measures to stay within HIPAA is a "Good thing."
IANAL, but my wife works in regulatory affairs for a biotech. I'm sure part of the issue is negative content but the major issue is that ANY comments whatsoever regarding drugs, side effects, efficacy,etc. would certainly run afoul of FDA regulators. The FDA regulates everything from punctuation to the size of the company logo in marketing materials. Anything that is not specifically approved that appears on a company-sponsored site could bring heavy fines.
Big Pharma is concerned that people will tell the truth about the horrible side-effects of their crazy drugs that are being pushed on us legally through doctors.
If telephones are outlawed, then only outlaws will have telephones.
Seroquel is NOT an antidepressant, and doctors need to stop prescribing it as if it were. Seroquel is an atypical antipsychotic, used to treat psychosis.
All of the current atypical antipsychotics have the WORST side effects imaginable (more so than antidepressants), so they need to start using them as they are designed to be used. For instance, I was on Seroquel for 1 month, and the person that took me off of it was the ER doctor that I was taken to after collapsing for no real reason.
These doctors need to stop messing around with serious medication. In my case, it was necessary, in most other cases, FFS use something else.
Proof that corporations really ARE people.. They now have to worry about idiotic things that random dipshits post on their wall...Yay!!!!
The boring, but obvious reason seems more likely to be:
"Hi, My name is Hutz, I represent a group of people suing company X for producing drug Y which caused horrific side-effects. If you want to join this action...."
Reputation.Com and shutting down their pages.
What a lame business model they are promoting.
If people post bad things about you then you probably deserve even more.
They maybe a few OCD posters/facebook/myspace/etc but the vast majority of people have something better to do that go around disparaging your *perfect* business. /rant
There is currently no obvious way for users of a certain drug to get in contact with each other, other than taking out an ad somewhere, or starting a discussion group or whatever. A facebook page devoted to the drug seems like an obvious way to facilitate this, but I think the drug companies might not want to be the ones to make it easy for consumer groups to form around each of their products.
Korma: Good
most drug company pages will have to have open Walls
Most drug company pages? I suspect the conversation might have started with Facebook saying something like "Nice pharmaceutical page you have there... it would be a shame if something happened to it..." and some companies just couldn't afford the protection money.
Facebook lied to us too about how they would handle our accounts, privacy, etc. You are not alone. :)
Have a Virgin Mobile USA smartphone? Give VMRoms.com a try!
For "Fans of Whatever Drug (TM)". Make it clear you're not official and let people run wild.
My respect went up for Facebook by a large margin. When Mark Zuckerberg ranted about the "necessary" end to privacy, I thought he would conveniently exclude corporations. At least this end to privacy effects corporations and individuals alike! This is as it should be.
The problem with Big Pharma in America and worldwide is that the industry has no interest in a cure for a disease or condition, only symptom mitigation. Big Pharma is concerned that this true motive will get exposed via Facebook. When you take drugs to counter the side effects of other drugs, the regiment ceases to be a cure and designed to keep you buying their drugs until you die because your condition was NOT cured nor was their any interest in a cure because cures don't make money. I think Big Pharma is concerned that other "sleeping" Americans will wake up to this fact once they read about other people's experiences. Medicines were never meant to be advertised and mass marketed! They should remain solely in the realm of the physician and used at the physician's discretion. Big Pharma and doctors have gotten to cozy. I think social media is the answer to this problem.
I wouldn't be surprised if the lawyers at these drug companies were concerned that they would somehow be violating the medical privacy laws by allowing visibility of (potential) users of their product by other FB users. If you were to post on their wall that you had adverse side effects, and your boss saw that comment and took action because of concern for a medical condition the company had previously not known about, I'm sure some plaintiff's lawyer would try to hold the drug company liable for exposing that fact (even while the boss/employer was also clearly in the wrong).
Simply liking the page so that you can see their updates may be a problem.
"The industry is concerned that users might write about bad side effects, promote off-label use or make inappropriate statements about a product, and that the comments could raise concerns from government regulators." -- Well, Facebook is a Web 2.0 application, which means it's a two-way instrument of communication. If those companies only want to advertise their products then they should stick with Web 1.0.
It's probably a good thing that they're taking down their pages. Really AstraZeneca, Pfizer and Merck have no business marketing to the public anyway. They should be marketing to doctors. They shouldn't be talking to people and telling them to go ask their doctors for drugs. If Drug X will help me with my problem, I expect my doctor to tell me about it. That's his job. I don't want to watch commericials of happy people running through the fields followed by "Ask your doctor if Bongutia is right for you." without telling me what it's for.
but frankly I'm wondering why anyone is allowed to open up a wall and the suppress public comments on their products
This is what's meant by 'social media'. Anything not suppressed is just peer-to-peer conversation.
I'm not sure what this article really means, but if Facebook is enforcing peer-to-peer conversation, then that's a good thing.
My God, it's Full of Source!
OUTSIDE_IP=$(dig +short my.ip @outsideip.net)
The problem with Big Pharma in America and worldwide is that the industry has no interest in a cure for a disease or condition
If this is true, then please explain vaccines that prevent a disease from happening in the first place. And explain antibiotics that do cure bacterial diseases. It's just that viral and noninfectious diseases don't yet have such an obvious silver bullet.
That's funny. Stupid mods.
>The industry is concerned that users might write about bad side effects, promote off-label use or make inappropriate statements about a product, and that the >comments could raise concerns from government regulators
what they mean to say is....they are scared that real info about their products will get out, and that any involvement of a government regulator on said product will now be questioned if everyone else knows that the drug is useless or has too many side effects.....it would lead you to believe the regulators themselves were on the take by those big med cos.
Facebook clearly does not know much about the pharmaceutical industry or the current debates going on in the industry about the role social media plays. I do consulting work for the pharmaceutical industry and have done a lot of work specifically with manufacturer sponsored web portals, use of social media, and drug safety in general. I can't say one way or another whether any of these companies should take down their pages, but there is very real risks involved with keeping them open. This has nothing to do with conspiracies about silencing bad publicity or any of the other crackpot theories out there. This has everything to do with the FDA and not getting fined or sued into oblivion. Here are some of the issues facing the pharma industry and social media:
Adverse Events: This is the official title for "when bad shit happens while taking our drug." This could be anything from a runny nose to death. Mostly only the more serious stuff even gets reported, but regardless, if something negative happens while taking a drug, the manufacturer wants to know about it. Not only that, but the FDA requires regular reporting on this. However, there are certain qualifications for an Adverse Event to be official. You need a drug, a patient, an event, and an indication (what you were taking it for). Without all 4, you don't have a reportable adverse event. The issue here is that the pharma company is worried about AE's reported over the internet in chatrooms and forums and what their responsibility is around this. The FDA has not yet made this crystal clear, but everyone seems to agree that you need to follow-up on any events posted to your own sites. For independent sites, you should be doing monitoring, but you don't need to report to the FDA unless the event is reportable (meets the 4 criteria). Due to the anonymity of online posts, this is usually impossible.
Off Label Use of Drugs: Off label use means the drug is being used for an indication that the FDA has not approved the drug for. This is very common with cancer treatments or any other areas where treatments are often experimental in nature. The drug may be approved by the FDA for treatment of diabetes, but a doctor may find that it is effective against a certain cancer. The FDA may approve this use in the future, but until that time, the manufacturer is not allowed to promote this type of use (Pfizer has been fined billions for violating this in the past few years). If people promote off label on 3rd party sites, then that's fine, but it cannot appear on a manufacturer owned site. Even though it's Facebook, it still counts as the manufacturers site.
Fair Balance: You know when you watch a commercial for a drug and after telling you all about the wonderful things a really fast voice tells you about all of the side effects and what not that might not be so great? That's called fair balance and it is required by the FDA. You see it on all of their web sites too. Anytime a promotional claim is made about a drug, fair balance must be provided. This has made twitter use very tricky since fair balance statements usually go way beyond 140 characters. If someone posts on the manufacturer's facebook page that the drug did something wonderful for them, then there needs to be fair balance attached. That can be tricky if you you're the manufacturer, since not only do you have to provide fair balance for your statements, but also for everyone else's.
The FDA has yet to provide guidance on social media: This is the biggest thing of all and it is why each of the points I made above are an issue. The rules of the FDA were not created when social media existed and they still have not been interpreted into social media by the FDA themselves. I'm sure there are some reasonable exceptions or changes that could be made given the current use of the medium overall, but we just don't know for sure yet. Most companies are cautiously making their own best guesses on what they feel is reasonable and still keeps them covered, but these
"It's not whether you win or lose, it's how drunk you get." -- H. J. Simpson
They don't want people to see through their illusions.
The efficacy of their drugs is illusionary, produced by
clever psychological manipulation of their users and
clever marketing to the psychobabblers who sell them
on their behalf. Psychonuts are medically trained but
the do not practice medicine, just sell drugs. They
no longer work as doctors and should be considered
broken doctors. Any doctor who practices, Psy Chi-a Trysts
Sy-Ky-a-Tree . Any ex-doctor
who practices that dark art should be struck of and
preferably struck down with a serious malady to teach
the fucker a lesson. Drugs don't fucking work, and
if you see a drug appearing to work, it's a sign that
you are fucked up to. If you're on too much drugs
then your out of your fucking mind and almost dead.
The body of a psychodrugee is a machine, the mind
is long gone baby and until they stop cramming in the
pills, the mind and the person won't come back. They
are not that stupid. Fucking fix this drug problem and
treat anty sykotix like the class A drugs that they are.
Legalise weed while your at it, the appearance of
weed complications is a sign your under the influence
of psychonuts and in fact the person is ok. If you see
them die and your on meds, its because you died and
are now in lala land. Fuck!
Drug companies would claim that this applies to all substances, and then cite Paraclesius' dictum from about 500 years ago that "all things are a poison, the matter is in the dose" (I forget the exact quote, which was probably in Latin anyway). But some substances are worse than others, and DHMO is a case in point. This chemical imitation of a naturally occurring material has a terrible safety record. Every cancer victim - and I do mean every victim - whose case has been investigated, has been found to have been using DHMO either as a component of their medication package or in an off-label use. It's a terrible perversion of a natural compound which can be had just by taking it from the environment, but the chemical companies want us to spend huge amounts on after it's been filtered, distilled, stained with other chemicals then bleached or steamed clean. Some chemical companies even make it by "direct synthesis" from the elements (this is a technology NASA apparently use, at gigantic pork-barrel expenses)! It's all part of a conspiracy of silence. Everyone in the medical arena is trying to cover up this compound's terrible effects, except the homeopaths, who would never offer homeopathic DHMO, even if it were diluted to the extent that not one molecule of the original DHMO were present in the whole accursed bottle.
Try researching DHMO and you'll find that it's bad reputation has been successfully cleared from the internet. It's terrible stuff.
Birds are not dinosaur descendants;birds are dinosaurs, for all useful meanings of "birds", "are" and "dinosaurs"