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Topic: Advocates concerned about Big Pharma's use of Social Media

Forum: Advocacy — Join here to discuss issues where we can have a voice!

Posted on: Apr 23, 2012 01:33PM

candygurl wrote:

Advocates Concerned About Drug Companies' Use of Social Media

Consumer advocates are expressing concern that pharmaceutical companies are using misleading marketing techniques to promote their products on social media websites, the Globe and Mail reports.

Advocates' Concerns

In November 2010, four consumer organizations submitted a formal complaint to the Federal Trade Commission citing examples of how drug firms jeopardize patient privacy by employing "unfair and deceptive" promotional tactics on social networking platforms.

Jeff Chester -- co-author of the complaint and executive director of the Center for Digital Democracy -- said many pharmaceutical companies monitor patient discussions on social media sites and track consumers' browsing habits to target them for advertising.

Chester noted that some drug firms create health-related websites and pay bloggers to praise their products without revealing any affiliation with the pharmaceutical company.

According to a 2010 Pharma Marketing News report, drug companies could be providing thousands of dollars to hundreds of patients for promoting their products on social networking sites. If the companies do not comply with FTC regulations, it is nearly impossible to identify which social networking site users are receiving compensation for their endorsements, according to the Globe and Mail.

Drug Industry's Stance

Pharmaceutical company Novartis has argued....

Read more: http://www.ihealthbeat.org/articles/2011/7/25/advocates-concerned-about-drug-companies-use-of-social-media.aspx#ixzz1smH3hd4Q

  

  

  

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Apr 23, 2012 04:43PM KittyKitty wrote:

I don't think it is ethical when a corporation or government agency tries to influence public sentiment  by paying regular people to speak on their behalf and to hide their paid employment. I have the same concern when an individual posts in social media as a "breast cancer advocate", not being crystal clear about her employment with the FDA.

  Posting about 'working with the FDA' is not the same thing as saying "I am employed by the FDA." We all see how this goes on, and it is how the FDA defends itself in the social media, in the wake of revoking Avastin, for instance.

 Paid spokespeople should have their employment affiliation in their tagline, right under their name.

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Apr 23, 2012 07:40PM - edited Apr 23, 2012 07:43PM by Ruby-

"some drug firms create health-related websites and pay bloggers to praise their products without revealing any affiliation with the pharmaceutical company - drug companies could be providing thousands of dollars to hundreds of patients for promoting their products on social networking sites"

I find the whole idea repulsive and very upsetting.  To manipulate and influence in such a way vulnerable women afflicted with a dreadful disease is immoral and should be illegal on the same level as drug pushers hanging around school yards preying on children 8-9 years old, disguising drugs in candies, despicable

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D Dx 2010, IDC, 2cm, Stage IIB, Grade 1, 3/5 nodes, ER+/PR+, HER2-
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Apr 25, 2012 07:05AM - edited Apr 25, 2012 07:06AM by Lowrider54

Personally, I find the ads that have invaded our television viewing and magazine reading particularly upsetting - the mere cost of the advertising is what annoys - it is money that could be better spent in the research arena.  While I understand the need of Big Pharma to get the news out on new medications, I think it should be best used by the physicians when treating a patient.  Surely, there are enough medical journals and other venues such as Huffington Post, Wall Street Journal and Science Digest (my personal fav) where the news of new drugs can reach the people.  I think more use of television news for promoting their recent discoveries more prudent.

To take advantage of vulerable individuals who are already desperate for new treatment when others have failed is, as Maud wrote, is immoral and while the need for money (a common theme amidst terminal ill patients) is a major concern - to pay for a testimonial that the individual has no experience with is just plain wrong.  And don't get me started about the FDA...that would be a full blown rant!  I am fortunate to have an extremely successful relationship with Avastin and thankfully, can still receive it since I was on it before the revocation - how long it will last, I don't know and I am fearful that this life-saving drug can be taken away from me at any time - a stresser that we who are trying to live with stage iv breast cancer most certainly do NOT need!

On the flip-side - I have found that Genetech takes a very different tact - it requests honest opinions concerning their products - Xeloda for instance - they offer a co-pay program for those of us with difficulty paying for the drug and they have a super support site where you can chat with a real person. The solicitation for experiences with the drug stresses to be honest - positive or negative -  there seems a genuine concern to improve their product.  And most importantly, I have never seen a TV ad for Xeloda nor a magazine ad with the exception of in medical-specific magazines.  Others should follow their example!

I have noticed lately that in some of the TV ads, there is a statement about the people being paid actors - and not in the tiny bottom print but right on screen next to the spokesperson(s).  This should be REQUIRED of all Big Pharma's - what has happened to the 'Honesty in Advertising'???

JMO...LowRider

Smile...it will make people wonder what you are up to...Initial dx 04/99 - CMF; 9/2009 bone mets Arimidex; 6/2010 Faslodex/Xgeva; 8/2011; abdominal wall invaded, ER/PR flipped to TN, Abraxane/Avastin//Xgeva 09/02/2011; 11/2011Xeloda/Avastin/Xgeva. Dx 9/16/2009, Stage IV, 5/25 nodes, mets, ER-/PR-, HER2-
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Apr 25, 2012 08:28AM KittyKitty wrote:

Your Avastin success is wonderful,

I am distressed that there are other people who may need Avastin who may never find out if it works for them, thanks to the FDA which acted so despicably in this matter.

 It is time that the FDA become aware, if they are not already, of the damaging effects of their pulling back drugs which can save lives. They have cleverly quelled the furor with allowing those who started on Avastin to stay on the drug, but the question remains, that some people seem to be really helped by Avastin, and now that the FDA has undercut the availability of that drug, how will the new people who could benefit from Avastin have access to it?

I am disgusted by the FDA yanking a drug which has clearly helped some people, and I think they need to hear about it and to continue being reminded of their callous disregard for human life, and their miserable failure in doing  their only job,  bringing the best in drug development to US citizens.

It seems to me that the FDA used Avastin as a warning to drug companies over price, and that there are lots of innocent people who could be helped by Avastin, as some people have clearly been helped, but now those people will just go without.

Furthermore, seeing how the FDA can withold life saving drugs like Avastin from people who need them harms even the people still allowed access to Avastin with continued emotional distress from having watched that nasty spectacle  play out and then living in fear that the high handed FDA will try something like that again. All over money.

The FDA needs to be concerned about improving healthcare options, not destroying healthcare options, as it currently is. Obviously the current FDA administration needs to go.

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Apr 25, 2012 09:36AM Ruby- wrote:

Hello Lowrider, glad to see you posting !  I totally agree with you about TV advertising - they really make me snarky especially when they roll down the list of side effects.

I followed your thread about the near death experience you had with some of the meds you were prescribed - very very scary. Thank you so very much for the warning.  I discontinued Effexor and Ritalin ('speed') and feel 100% better Wink 

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D Dx 2010, IDC, 2cm, Stage IIB, Grade 1, 3/5 nodes, ER+/PR+, HER2-
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Apr 26, 2012 11:34AM Ruby- wrote:

Here's one behing the scene, ex-pharma worker, trying to make a mint on our backs 

http://www.doseofdigital.com/about-dose-of-digital/

“The cell’s intracellular cytoplasmic sea is an ocean of symphonic motion awash with incomprehensible complexity.” Howes, M.D., Ph.D Dx 2010, IDC, 2cm, Stage IIB, Grade 1, 3/5 nodes, ER+/PR+, HER2-

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