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."

Comments

Can't they moderate their own wall?

[Assmasher]

Surely their commercial advertising budgets (which are freaking astronomical and reedonkulous) could afford an intern for this.

Re:Can't they moderate their own wall?

[jellomizer]

There is a problem with Public Communication on Healthcare in general.
HIPAA
So if you bust on a drug company unfairly (which often happens on the internet as many makes their opinion of what a friend of a friend said about something) The healthcare company cannot make a rebuttal, because say for example someone says Drug X killed their friend the Drug company who looked into the matter found that they were just prescribed the drug, but an unrelated condition killed them, eg. They took a anti-depressant drug when they were already in the advanced sets of cancer. They cannot rebuttal the claim thus are forced to look bad.

The patient and public is free to discus anything about a medial condition, however the healthcare organization cannot. And moderation of comments will look bad like they are trying to hide things.

Re:Can't they moderate their own wall?

[jedidiah]

You mean a health care company can't comment on their own data that they should have needed to gather in order to be able to sell a medical product in the first place?

Preposterious.

Drug companies own ad are ammunition enough. You just have to bother to pay attention.

Re:Can't they moderate their own wall?

[jedidiah]

You did that just fine without violating any individuals personal privacy laws.

Not that a drug company would be in a position to disclose that sort of information anyways. They simply don't have the persons information. That's as it should be.

It's time for you to give up being a corporate shill.

Re:Can't they moderate their own wall?

[Oxford_Comma_Lover]

> Not that a drug company would be in a position to disclose that sort of information anyways. They simply don't have the persons information. That's as it should be.

Drug companies pay pharmacies to get the history of drugs they sell and who prescribes them. That information includes ID #s unique to particular patients, without formally identifying any of the patients. In the opinion of the pharmacies, etc..., this is enough to comply with medical privacy laws. But don't you think if you got a little bit of information on a patient--where they lived, when they died, a little bit of info on their history (enough to know what other drugs they might have tried), and a doctor or two of theirs, that you could guess a fair number of patient identities from the numbers?

Re:Can't they moderate their own wall?

[Savantissimo]

Correct. But the whole question is a red herring. These drugs are all dangerous and have side effects which the companies would prefer not to mention. They are routinely promoted by the drug companies to doctors for off label uses. For instance, Seroquel is not an anti depressant as the summary states - it is an antipsychotic which is only proven against schizophrenia - even the use in bipolar disorder is the wrong drug except for fully psychotic episodes. Seroquel causes many nasty neurological effects including tardive dyskinesia (permanent), neuroleptic malignant syndrome (sometimes fatal), seizures, as well as the usual mental dulling, lack of energy, weight gain often leading to diabetes, and other very serious side effects. All the antipsychotics are obscenely over-prescribed and highly dangerous. In fact, the same is true of all the psychiatric drugs that aren't completely ineffective, and some that are.

What 'Special Protection'?

[eldavojohn]

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?

Re:What 'Special Protection'?

[erroneus]

Idealism... what ever happened to that?

These days, business simply tries to get away with whatever it can rather than take the high road you describe. "Everyone does it" doesn't make it right or good. I really dislike big pharma and it is part of the reason I do all I can to avoid using their products or services.

Eat right, stay active, seek the causes of problems instead of hiding the symptoms. Sounds simple right? (pretty challenging in practice)

Re:What 'Special Protection'?

[Anonymous Coward]

your doctor will then report this to the company and the government

Hahahahahaha. Oh wow, that was funny. You mean the same doctor who gets kickbacks from the same companies he's supposed to report?

"Hello, Dr. John Doe, we heard you wanted to report unfortunate side-effects caused by one of our drugs. We'd like to talk about it in our new seminar, which will be held in the Bahamas, for two weeks, at a time of your choosing."

Hilarious :D

Re:What 'Special Protection'?

[nahdude812]

I'm happy that big pharma is losing this option

That's silly. DVD manufacturers do not have the same regulatory requirements as a pharmaceutical company. Having worked at big pharma until recently, and having been involved in this very aspect of their operations, I can say that the concern is not as much over "omg your product sux" as it is over things like adverse event reporting. That's not to say they want an open forum for people to bitch about their products - there's a lot of medical misinformation out there and they like to not provide a mouthpiece for that.

But adverse event reporting ("bad side effects") is something which a company has a specific regulated requirement to respond to in a particular way. This is what happens: a doctor gives product X to a patient. Maybe it was on-label application of the product and maybe it wasn't. Maybe the patient is in a risk group which is recommended against receiving the product. Doesn't matter. That patient has either a related or an unrelated event occur as a result. The doctor comes seeking advice on how to proceed.

In an "open forum" several things can happen as a result. First, someone who doesn't represent the company can respond and give advice which is incorrect and not based in medical fact, but the doctor could act on that advice, worsening the patient's condition. Second, the event could be very time critical, and the report could potentially not be seen right away, or could get missed in a deluge of other noise (sometimes the writings of these doctors is not any better than average Internet noise, and even if you're looking for it, you might miss that this is an adverse event report). In the mean time the patient needs medical care, and their doctor is waiting on a response.

Re:What 'Special Protection'?

[Omnifarious]

What's going on here is that the medical industry absolutely detests the idea that people might have a better idea about things than doctors. I'm not saying that a doctor's training and knowledge are useless. What I am saying is that people's individual experiences are also very important.

It's high time, in my opinion, that doctors and the medical industry in general got off its high horse and started dealing with people as equals.

Re:What 'Special Protection'?

[Nithin Philips]

There is a recent case that shows the opposite. The FDA wanted to revoke the approval for Avastin for use in metastatic breast cancer threapy due to the severe side effects and almost no measurable benefits, not to mention the expense. But some people went hysterical claiming that the FDA is taking away a valuable drug (lot of name calling and mud slinging there) despite that fact that the drug only made you more miserable while the prognosis did not change. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000352/ http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm193900.htm

Re:What 'Special Protection'?

[Oxford_Comma_Lover]

Most doctors only report negative side effects if (1) they are reported by a large number of people, and (2) they accord with the doctor's preconceived notions. Most docs make up their own mind whether to believe a patient's report of side-effects. (Crazy, but true.) To be fair, this is mostly a problem during the studies that get the drug approved in the first place, but that's mostly because that's when the side-effects tend to get reported at all.

Re:What 'Special Protection'?

[hedwards]

When I saw the headline, I thought that the companies were being ridiculous. Then I thought about all the trouble with unsubstantiated accusations that immunizations can cause autism.

Re:What 'Special Protection'?

[comp.sci]

As a matter of fact, medicine has been trying very hard to stop basing its beliefs in "individual experiences" but rather in statistical proof that meds work or don't work. I think people upvoted you because medicine is increasingly impersonal and that's unfortunate, but equating this to listening to personal experiences when discussing medications is ludicrous. Have we learnt nothing from the big vaccine scare? Some people deducted that it was vaccines that cause autism and were treated as equals by the media. This is actively leading to quite a few children needlessly dying. To make this more applicable to Slashdot readers: replace "doctors" with "IT specialists" or "programmers". Should we really treat everybody as equals when it comes to implementing new policies, what technologies to use or which devices to use? Of course not, expertise is needed, otherwise the new policy will be to install at least 4 toolbars for IE 6 on every Compaq computer.

Re:What 'Special Protection'?

[hedwards]

There's already a way of doing that, you report it to the FDA or whatever the equivalent is in your area.

Individuals reporting these sorts of things to the public is the last thing you want to have. People have a tendency to draw correlations which aren't realistic and as soon as people find out about a possible side effect you have to worry about the placebo effect. Which on a side note is getting stronger at this point making a lot of medications passed by the FDA unable to beat a placebo if they had to go through trials now.

Re:What 'Special Protection'?

[Tsingi]

People are still reluctant to give their children vaccine shots

When you can't trust the government or media, how do you know? These are your kids.

The people that sit on drug review boards are almost all taking money in some form from drug companies. Similarly, the people who work in government agencies. It's now up to you to decide what is dangerous and what is not. The government no longer serves the people, it serves corporations. You, buddy, are on your own.

Cheers!

Re:What 'Special Protection'?

[gsslay]

otherwise the new policy will be to install at least 4 toolbars for IE 6 on every Compaq computer.

This is typical of the kind of elitist attitude we're up against. I installed 18 toolbars on my internet and found that it made my printer's ink cartridges last longer. Obviously more internet toolbars means better printer mileage. But when I suggest this to our computer people at work they treated me like an idiot, as if I didn't know what I was talking about.

I also recently turned off my computer's anti-virus program, because I've found that stops those annoying little windows when you open pdfs off the internet. You'd think they'd be interested in my discovery, but all I got was shouting and them complaining to my boss.

It's high time the computer industry listened to the experience of people and stop pretending they know everything!

Re:What 'Special Protection'?

[Toonol]

It happened to silicon breast implants. Pure hysteria.

Or, slightly unrelated, DDT.

Re:What 'Special Protection'?

[donscarletti]

Half of the patients who walk into the doctors office are of below average intelligence, more than half because being smart promotes a healthy lifestyle. I'm assuming you are a programmer by your signature, don't you just hate it when you're talking to a coworker who has an interest in what you're doing and keeps pushing obviously incorrect assumptions and theories and not understanding your answer because they simply do not have enough grounding in the subject to really start forming ideas. Well, a doctor has to see many, many people who are far dumber than your collegue. People in this world believe that raping a virgin cures AIDS and others believe that vaccination causes autism. How do you reason with that?

I've never had a real problem with doctors treating me like an idiot, mainly because I've never walked into doctors surgery trying to push my own diagnosis. The main thing that reasonably inteligent people who dislike doctors don't understand is why they walk into the doctors surgery presenting all the symptoms of bowel cancer, the doctor is going to diagnose a bacterial infection and going to give you antibiotics. Why? Because 9/10 times it IS a bowel infection and if you're still bleeding out your arse after a week of pills, you're going to come back. Now you've read in a book that cancer presents that way, and that is 100% correct, but chances are: it's not; if it is, they'll find out when they get the endescope up you later (after they've tried everything else).

Maybe your doctor is a dick, many people are. But if he/she is just a regular person, just make sure you ask intelligent questions that show you are listening and don't put forward too many stupid ideas and you can generally be treated as an intelligent and rational human being. Don't come across as a douchebag though, because everyone hates dealing with douchebags at work.

Re:What 'Special Protection'?

[Toonol]

Exactly. I'm dealing with doctors wanting to put my wife on all sorts of medications due to some test results which are, frankly, just barely abnormal. The side-effects of the drugs look to be worse than the condition they are treating.

It's important to treat all medical advice from doctors as professional recommendations. Something you should pay serious attention to, when YOU make the decision. They are there to help you decide what your course of treatment should be. They aren't unbiased.

I would wonder if this wouldn't run afoul of HIPPA

[studpuppy]

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).

Heaven forbid

[Anonymous Coward]

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.

Re:I would wonder if this wouldn't run afoul of HI

[delinear]

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.

Be the first to Like this big pharmaceutical!

[TraumaFox]

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!"

Re:Be the first to Like this big pharmaceutical!

[Zebraheaded]

The problem isnt suppressing people from talking about negative side effects, it's that they need to be suppressed from doing it "like this". Legally, as an employee of a pharmaceutically company, I am required to report when I hear by any means of a side-effect, defect, or off-label use of one of the products manufactured by my company. The company would prefer these complaints to be filtered by doctors, not come directly from consumers. We need to spend our time investigating "My patient used drug X while taking acetominophen, and experienced heart murmurs." not "I took drug drug X and now my leg hurts real bad. (but I didnt tell you about when I fucked my leg up playing softball last weekend)." I can easily imagine many people going "My doctor told me it was all the hamburgers I eat causing my heart pain...but I think it's the anti-excema meds I take...Im going to complain on Facebook because people need to know!" Then the company ends up having to investigate a baseless claim, and improper information gets disseminated via the internet because people wil believe anyone that says "Big Pharma doesnt want you to know!"

Re:Wut?

[schwit1]

The drug companies don't want to be held liable for what customers write. Some kid talks about using his mom's prescription or sharing it with friends, and next thing you know some law firm is suing you.

Re:Wut?

[penix1]

You've seen the ads...

Have you used brand X and had side effect Z? Call 1-800-BAD-DRUG now! You could be eligible for compensation!"

The companies don't want there to be any evidence that they were aware of an issue with a drug prior to the jury trial. It is that issue alone which allows for plausible deniability.

Re:I would wonder if this wouldn't run afoul of HI

[todrules]

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?

Not about "bad publicity"

[Anonymous Coward]

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."

Re:Wut?

[myurr]

The problem isn't with the public sharing information, it's the public sharing mis-information. I know a couple of hypochondriacs and they come up with all kinds of crazy theories as to what is causing their latest ailment, and yet the doctors never find anything wrong with them and the changes they make to their diet / lifestyle / medicine / etc. never seems to make a blind bit of difference to their view as to whether or not they're ill in some way.

These types of people are far far more likely to kick up a fuss on a public web page if given the opportunity to than those of us who generally have a positive outlook on the few medical treatments we have received are likely to post something positive. Look at the fuss over MMR for example.

Seroquel not Antidepressant

[Aeiri]

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.

Social networking

[biodata]

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.

most?

[jamesh]

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.

Problem

[DaMattster]

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.

Vaccines and antibiotics

[tepples]

You need a Tetris shot.

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.