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.
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.