Guest Post: “Creepy” invasion of pharma into patient-targeted social media space 3

Editor’s Note: Recently I wrote about why patients should be subject to the same critical scrutiny as anyone else when their views about medical and scientific topics are presented in news coverage of medical stories. One aspect of the subject that I didn’t consider is that those patient views may well have been influenced by industry, as suggested in this guest post by Gary Schwitzer, which originally appeared on his Health News Review blog. CardioBrief readers may also recall that I outlined similar heavy-handed efforts by industry to influence familial hypercholesterolemia guidelines (the same disease discussed below) in a series of articles on the National Lipid Association (here, here, and here).

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

by Gary Schwitzer

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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3 comments

  1. We need some additional realism here. We all know pharmaceutical companies are profit centered organizations. Without profit the funds would not be there to support the organization and invest in new medicines.

    Ms Mann says she is aware of a potential FH new comer “and it’s limitations”. What about the benefit patients “may receive” as if the toxic elixer has no apparent benefit. If that were the case, why are the millions being spent to try to improve the condition of people with FH through the development of a new drug?

    I do agree that this PR person has no business in that type of forum making comments or trying to promote a new medicine whether the drug has been granted FDA approval or not. Her choice of forum shows a lack of thought.

    Also, however, many seem to have forgotten, through the demonization of pharma, that these companies produce medications that give doctors the “tools” to help patients. Without them healthcare would not advance.

    • Matt

      I understand that the company plans to do an outcomes study. When that study is completed we will hopefully know whether mipomersen prevents cardiovascular events or not. Until then it’s hard to get too excited about the drug.

      Marilyn

  2. Reply to Matt Trasher specifically

    Pls read Marcia Angells book “the truth about drug companies……” for a starter thankfully there is an entire literature on the subject now.

    Ms. Mann question and Larry Kuston’s coverage on this page and the tone of alarm for the public against PhRMA is entirely appropriate.

    In general pharma is not out to do what you imply they do. Their guiding rule is profits at all costs.

    In reality most of the initial research on those live saving treatments (in itself a lot less common than the commercial media lead us to believe), happens in small labs paid for by you and me.
    Health care would advance nicely without a profit driven PhRMA and a National Formulary instead.

    Wilbur Larch MD, FACC

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