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PR Company Facebook Lurker Offends Breast Cancer Survivor On Behalf Of Genzyme

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.

*This blog post was originally published at Gary Schwitzer's HealthNewsReview Blog*


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3 Responses to “PR Company Facebook Lurker Offends Breast Cancer Survivor On Behalf Of Genzyme”

  1. medicalcontrarian says:

    Whenever you have more than one party involved in any activity, you will inevitably see a divergence of goals. Marilyn Mann must realize that her quest requires the recruitment of partners, unless she has delusions of control and influence which woudl automatically preclude her from beigng effective in her activities. To boil donw her argument to such simplistic concepts as:

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

    It is an attention grabbing soundbite but it is nothing but unconstructive and desceptive simplicity. Can the same not be said for the entire medical community? Even though some of us may work for “non-profits”, a meaningless term in fact, physicians and the remainder of health care have different motivations from the patients who seek our care. Should that become a non-starter for use to cooperate in the delivery of care to patients? Few of anyone I know in health care have taken oaths of poverty but that does not mean that we and patients cannot interact in ways that generate win-win transactions.

    The way I see it is that perhaps the best partners that patients who have complex lipid disorders can have are pharmaceutical concerns. Their allies in the rest of the medical community are very limited and the interests of the pharmaceutical companies, while not perfectly aligned are more closed aligned than a physician workforce which likely views management of lipid disorders as a low margin activity which they would just as well delegate to someone else.

    Suggesting that this type of activity needs additional regulatory oversight opens a Pandora’s Box. I am not a particular fan or apologist for the drug industry. Like the remainder of the workd, the spectrum of motivations driving people in this industry includes mostly self interest (and little of it enlightened) but that is the world in general. To expand the power of the state in the hope that this will result in less vice and selfishness thinking the outcomes will be better than the last effort in a different realm is Utopian at best and more likely destructive via unintended consequences.

    What it boils down to is drug companies make products that can help people. They are motivated by the desire to make profits which is required create a lasting entity that can count on to continue to make drugs that help people. Entities that don’t prioritize their own survival are not around for long to do what they set out to do.

  2. Gary Schwitzer says:

    On my blog, where I originally published this piece, Marilyn Mann posted her own comment, as follows:

    “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.”

    http://www.healthnewsreview.org/blog/2011/07/creepy-invasion-of-pharma-into-patient-targeted-social-media-space.html#comment-20023

  3. Thanks for your thoughtful reply, Medicalcontrarian. When we really look under the hood in healthcare, we see a very complex network of motivations. For-profit motives are not intrinsically evil, though it’s important to be as aware as possible about “the source” of our information. Most sectors of our economy are like this, but when one’s health/life hangs in the balance, suddenly everything becomes very personal. That’s why medicine is so emotionally charged, in my view.

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