US: What should FDA do in terms of social media and pharma companies?

There’s a campaign under way to gather comments from patients to submit to FDA following the hearing that FDA organized about the topic of social media and how pharmaceutical companies participate in this space.

Here are some thoughts by other patients, posted on the Pharma Marketing Blog, by John Mack (a very big and vocal patient advocate):

Would you mind sharing your thoughts with him? He will be keeping an eye on this discussion for comments that FDA should take into account.

Phamaceutical Companies all lie! They make drugs that cause diabetes then make drug to treat the conditions they caused.
If you let them have their say here they will mislead and add to the confusion of a difficult world to live with diabetes.
Their are so many drugs that diabetic should be aware of that can harm … Example 1 on certian types of antibiotics diabeteics should never take because it increases the chance of tendon rupture. Example # 2 Did you know that a cholesterol medication in some cases cause diabetes. Example #3 HCTZ can increase the risk of insulin resistance! Example #4 some antidepressants can increase blood sugars to the point of death! Example #4 They will never tell you that some of the drugs for type 2 diabetes are excreated through your kidneys there by increasing your risk for kidney disease. Did you know that Medtronic wanted George W. BUSH to pass a law saying that if a drug company makes a drug or a medical device…and if it is was approved by the FDA …and you were injured by their product… they could not be held liable! THANK GOD THAT DID NOT PASS!
THE FDA stood by and watched while a fast tracted antibiotic cause diabetes. After numurous calls were never answered! That company was made to only black box the drug and say “that it should not be given to anyone who maybe prediabetic” ( there are only 5 million people out there who do not know if they are prediabetic).
The FDA forgot that they were invented to protect the people not be bought by BIG Phama! It is all a game about profit they should not be allowed here! The FDA should hear what BIG PHARMA does to patients and take action to help.stop the explotation of those in need of reliable medications.

Thanks for posting. Great topic for discussion. I’ll post on John’s blog. Ads constantly urging consumers “Ask Your Doctor About ______” aren’t for our welfare. It’s bad enough that most doctors get their info from pharm reps.

I found this post Perspective on the FDA Social Media Hearing to be very good

Information pharmaceutical companies put anywhere should be held to the same rules for labeling their product. I also believe the warning that says, “this product has not been evaluated by the FDA” should be in bold lettering and the first thing you read!!!

This is a subtle issue and will actually be very difficult to resolve. The emergence of social media had established a core center of influence which previously being voluntary had always been assumed to be independent and objective. Now this is certainly not true. We all get upset knowing that pharma companies use their corporate clout to “bribe” doctors or other parts of the system to influence decisions that should be made in the patients and societies best interest. But what about influencing social media? Can or should the government regulate it? Should social media self regulate? It is complicated.

Heck, given the huge amount of pharma funding given to organizations like the ADA, how do you know they aren’t being corrupted.

Very good points! I think regulation should come from outside social media. If you regulate your own behavior, there’s room for adapting the rules to benefit you, don’t you think?

Great topic, Manny. I’ll be sure to post at Pharma Marketing, too.

Anyone who saw Michael Moore’s “Sicko” might remember that Michael asked a group of activists in Europe why Americans’ health care was so poor in comparison; the response was that we do not protest. That may be due, in part, to our lack of collective thinking or absence of community sense – the tendency to gather has been reduced to Hallmark holidays in favor of independent single-mindedness painted as freedom and patriotism. But if we knew how much litigation is in process against pharmaceutical companies, and paid attention to the cost in lives lost or destroyed in pursuit of shareholder profit, we should be stirred to massive protest to demand independent oversight of pharmaceutical regulation.

Sadly, though, it is not only the pharmaceutical companies that are to blame for the state of health care. The giants of the food and chemical industries – the Archer Daniels Midlands and Monsantos – should be held as much or more accountable for their part (see “Food Inc”). Here’s a link to a progressive website article highlighting some of the shenanigans that are permitted right under our noses:….

Personally, it escapes me how pharmaceuticals are permitted to advertise universal efficacy even though research and testing is limited to a relatively narrow range of subjects (generally, white males).

Looking forward to reading more responses on this topic.