“Creepy” invasion of pharma into patient-targeted social media space

Marilyn Mann is a very smart woman. She’s a securities lawyer. But she’s also educated herself about health care out of necessity. She’s a breast cancer survivor and she has a daughter with heterozygous familial hypercholesterolemia, a genetic disease causing very high LDL-cholesterol. She is one of the administrators of a Facebook group called
Familial Hypercholesterolemia (FH) Discussion Group – intended primarily for people with FH or their family members.

Recently, Mann got a message from a PR woman who had joined the Facebook page.

“Hi Marilyn,

A few months ago, I had emailed you about some research I was doing about a new treatment for FH. I am now working with a pharmaceutical company, and the company currently has a drug in development to help treat people with severe FH that may not be responding to current therapies.

As part of my work, I am trying to do exactly what you are doing – to educate patients and physicians about this disease and to raise awareness so that undiagnosed patients can get the help they need from lipidologists. When I saw your story, I thought it might be good for us to connect so that I can explain to you a little about what the company is doing and to see how we can work together to reach a larger audience. Through my work in FH, I am regularly in touch with many of the world’s leading researchers and the people who work at the company to discuss ways we might be able to collaborate. Is this something you or any other would be interested in discussing further? I hope to hear from you soon.”

Mann arranged a phone call with the PR woman, who then revealed she was working for Genzyme, which has a drug in development for FH. The woman sought Mann’s help in getting journalists to cover patient stories about FH. Mann said she politely declined the request, saying:

“Genzyme’s purpose is to sell their products. My purpose is to help patients. Those two goals are not the same.”

Last night Mann wrote to me asking if this was a common tactic for a drug company to take before it even had an approved drug. We followed up with a phone conversation, in which she said the following:

“I think it was creepy for this PR woman to join the Facebook page, lurking there and observing on behalf of her drug company client. The idea of having a drug company planting human interest stories in the press is yucky….a big corporation pulling string behind the scenes. I’m not interested in being used in that way.”

She also says she told the PR woman that she knew about Genzyme’s drug and about what she felt were limitations about the evidence for the drug in trials so far.

She wonders how the FDA would view this drug company PR maneuver. I will pursue this question on another day.

For now, hats off to a very informed health care consumer, Marilyn Mann, and her clear commitment to helping FH families receive unbiased information about a very serious condition that has touched her family.

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Corinna West

July 7, 2011 at 5:55 pm

I’m sure this happens all the time, actually. At the Nebraska state mental health consumer conference there a drug rep trying to sell long acting injectable meds. The rep said, “That’s what I’d take if I had to take these meds.”
My advocate friend said, “Well, bend over, lady.”

John Clare

July 8, 2011 at 8:16 am

I’m a communications consultant to many big pharma firms and I’m not sure the PR person in this case did anything wrong. She was upfront and polite about her role, and asked if any patients would do what many have done, and be interviewed to raise the profile of FH.
The owner of the group politely declined as was her right.
It would have been a different case if there had been any subterfuge involved, but there wasn’t.
I think on this occasion you have aimed at the wrong target.
Good luck with future postings.

Gary Schwitzer

July 8, 2011 at 8:34 am

With all due respect, perhaps you need to do a better job of being plugged into peoples’ perceptions of your pharma clients and of some “communications” tactics that people find troublesome. It was not just the Facebook lurking that bothered Mann, but the attempt to influence news coverage.
Leading patient advocate Trisha Torrey picked up on this blog post in one of her own yesterday, entitled “Creepy, Manipulated, Used, Discounted – and Sinister, Too.” http://patients.about.com/b/2011/07/07/creepy-manipulated-used-discounted-and-sinister-too.htm
If, in your line of work, you are not sensitive to the perceptions of savvy health care consumers like Torrey and Mann, then perhaps it is you who is aiming at the wrong target.

Marilyn Mann

July 8, 2011 at 12:38 pm

Gary is correct. My main concern is that the news coverage could be slanted to serve the interest of the drug company. In this instance, Genzyme’s drug mipomersen would not be used as first line therapy for FH, but as add-on therapy for people whose cholesterol is not controlled with a statin. These would generally be people with the most severe forms of FH. Presumably, these are the kind of patients Genzyme would like to see tell their story. They would not be looking for people whose cholesterol is brought down to normal levels with a statin. Those people have no need of an additional drug.
And, just in general, I don’t like the idea of corporations working behind the scenes to generate news coverage to serve their interests. They have a right to do that but I personally have no interest in being part of that. In addition, such behind-the-scenes maneuvers are not always disclosed.

Susan Fitzgerald

July 11, 2011 at 11:11 am

Mr. Clare: I think the Pharma rep finessed her real role beautifully but that is not the same as being 100% up-front. This is classic technique to pull somebody into something before they know what’s what.
If you think NOT telling a lie is the same is telling the truth, that’s going to make it difficult to gauge your firm’s actions and the public’s reactions.
Good luck with that. And thank you Gary — keep up the great work.

Ken P.

July 12, 2011 at 4:58 pm

Interesting post.. I will say I am a bit curious about this worry regarding influencing news. Of course corporations (including pharma) try to influence news coverage, just as those on the other sides of issues work to get their views expressed, just as patient advocates with pure intentions work to get their story out, just as our government/regulatory bodies work angles to express their viewpoints. That is how news works… with the reporter acting as gatekeeper. I don’t mean to condescend.. but how do you think it works?
In this specific instance, the PR person was above board in presenting who they were… she clearly states that the drug is for severe FH and also states her intentions are to help raise the profile of FH. It sounds like a “disease awareness” campaign… often conducted by industry (often based on something akin to the rising tides theory). In the end, the company certainly hopes to connect the dots to their drug in development (or perhaps just wants to raise their profile in this disease area), but that doesn’t mean their goals can’t be mutually beneficial to yours.
I am also curious about the expectations you all have of someone that joins a public discussion group? It is certainly an evolving area… would you want them to somehow announce who they were/their affiliation upon joining? In full disclosure I also work with pharma and continually advise that transparency is key to any meaningful participation in social oriented channels, so wondering about your feelings related to that behavior.

Gary Schwitzer

July 12, 2011 at 7:57 pm

As one who has dedicated his career to the improvement of health care journalism, I DO worry about the many attempts by drug companies to influence news.
I don’t need someone who “works with pharma” to tell me how news works. That IS condescending.
But I agree with you that this sounds like a “disease awareness campaign” – and the problems with some of these campaigns are many. Moynihan and Henry wrote in PLoS Medicine:
“…disease mongering is the selling of sickness that widens the boundaries of illness and grows the markets for those who sell and deliver treatments. It is exemplified most explicitly by many pharmaceutical industry–funded disease-awareness campaigns—more often designed to sell drugs than to illuminate or to inform or educate about the prevention of illness or the maintenance of health.”
I also agree with you that the ethics of social media is “an evolving area.” And, yes, I believe that many media ethicists would say that announcing who you are and who you are affiliated with would be a sound ethical practice.
For Marilyn Mann’s own clarification of some of her concerns, see the comment she posted two spots above yours. She wrote: “I don’t like the idea of corporations working behind the scenes to generate news coverage to serve their interests. They have a right to do that but I personally have no interest in being part of that. In addition, such behind-the-scenes maneuvers are not always disclosed.”
And that’s an ethical issue all news consumers and health care consumers should be concerned about.

Ken P.

July 12, 2011 at 9:25 pm

Gary apologies.. I knew that was over the top, but what I meant to drive home is that every single day, across every industry, corporations, special interest groups, our government mouthpieces, and various other players are working “behind the scenes” to influence news. Its endemic to the process.. heck it is the process no? Its not simply a problem limited to pharma.. and yes it should be a concern(or at least on the radar) for all consumers of news.
Marilyn has every right to decline participation in such a campaign, but I think the assumption that a company can not both sell their drugs, and at the same time help patients is not always correct. Sometimes patient and pharma interest intersect.. you can “use” each other in some cases. Its a point I would make in response to the Trisha Torrey’s post re: the Avastin hearings (another example of something that has gone on for ages. See Tysabri and many before that, hence patients at many AdComs announcing any financial commitment sponsors made regarding their attendance)
I completely agree on the point regarding disease mongering (which happens all too often), but to me this does not appear to be an example of such a thing. With Genzyme’s orphan disease focused business model.. impacted patients might benefit a great deal from both the company’s commitment to the space and an overall elevation of the awareness of the disease. Genzyme has a very comprehensive approach to marketing for orphan diseases, and charges a pretty penny for their goods, but I am not certain disease mongering is part of their arsenal (its price/exclusivity)… They aren’t “pushing” drugs to mass markets.
I also agree that announcing your presence/affiliation in some manner is probably wise.. just a matter of when, how and figuring out “then what.”