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Trisha Torrey

Creepy, Manipulated, Used, Discounted - and Sinister, Too

By July 7, 2011

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It's no secret that I am not a fan of pharmaceutical companies' marketing, including their feigned innocence when it comes to manipulation of the marketplace.  But the events of this morning leave my hair standing on end, make me want to take a shower, and help me realize just how insidious big pharma's influence can be, even by those who have no clue they are being manipulated and used.

Item #1:  A post by my friend and colleague Gary Schwitzer from Health News Review.  His crusade is to keep the media on the straight and narrow when it comes to reporting on anything related to health and medical studies. His post focuses on a "creepy invasion of pharma" into Facebook - like this: Marilyn Mann (another person I admire) runs a Facebook page for a genetic problem her daughter was born with called FH.  Marilyn was contacted by someone who said she was a researcher for FH and was hoping to educate physicians and patients about her research.  It turned out the contact worked for a pharmaceutical company - and had infused herself into the FH Facebook information in an effort to steer the shared FH information favorably toward the drug.  Marilyn was creeped out, and felt as if the drug company representative was simply trying to manipulate her.

It sure sounds that way to me. Creepy is right. Glad Marilyn figured that out.

Item #2:  A post by Larry Husten from Forbes was brought to my attention. He suggests patient points of view be muzzled by the media, and cites a number of articles about the Avastin hearings at the FDA as being too reliant on patient input, input that is not scientific in nature. He slammed certain media outlets - and patient opinions, too.

I read the linked pieces, and except for one of them (which was titled "A Patient's Plea" and therefore should be reliant on that patient), I did not feel as if the pieces were at all unscientific.  I felt as if the patient perspective lent some balance to them.  What ensued was a Twitter argument among Larry, another Forbes reporter, Matthew Herper, and I.  It will come as no surprise that I stuck up for patient points of view!

.... until I gave them some further thought....

The reason the Avastin hearings at the FDA were so high profile is because patients, in droves, went to Washington to speak on behalf of their experiences with Avastin.  They were there as individuals, and many were representing "advocacy groups" - small, grassroots organizations they had founded to support Avastin's use for breast cancer.  In almost every case, they were pro-Avastin, so much so, that they shouted taunts and obscenities at not just the FDA panel that was ruling based on science, but at the few dissenting voices, too - those who spoke up to say that Avastin's science did not prove that it had worked for breast cancer patients.

The contention of those hearings leaves me with a number of questions. I don't want to discount these patients, but I do wonder how and why they got the information that Avastin was such a good drug for breast cancer.  The more I thought about it, the more I (as a representative for patients) began to feel... used.

Question #1: Every patient who took Avastin took other drugs and experienced other treatment approaches, too.  Many patients took Avastin and died or got sicker anyway. Some who took Avastin live (and even seem to be cancer free) - but who is to say it was the Avastin that kept them alive?  Maybe it's the other drugs, protocols approaches or combinations that worked?  Who convinced all these people that, among all those other treatments, it was specifically the Avastin that helped them?

Question #2: How is it all these people decided to go to Washington for the FDA hearings?  When I say "all these people" I mean, those who supported Avastin. There were very few patients there to speak against Avastin.  The audience of patients and families was extremely one sided in favor of Avastin. Who suggested they go to Washington? How did they even know hearings were taking place?  What incited them so much as to become so over-the-top vocal about it? Which then makes me wonder....

Question #3:  In today's economy, especially for those who have been so sick and have, therefore, paid a lot of money for healthcare (whether or not they have health insurance) - how could so many of them afford to go to Washington?  I know firsthand how expensive plane tickets are and how much hotels cost.  Those patients hailed from all over the country.  Who paid for their travel?  OK - I'll allow that some of them may have paid for their own, but I have to wonder (out loud and on a monitor) how many of them had their trips paid for - maybe by their non-profits (but who is donating to the non-profits?)  I doubt Roche / Genetech, Avastin's manufacturer, would have paid directly for patients' travel (they wouldn't want it to be so easy to figure this out), but.... ?

The fact that I even ask the question gives me the creeps.  It seems so manipulative and sinister.  But it's the only conclusion I can draw.  There's just no way all those patients weren't subsidized in some way for their travel. (Why don't you stay and enjoy some time in DC while you're at it!)

When added to the knowledge of Marilyn's Facebook story above...

And the fact that all this manipulation may have led to Larry Husten's muzzle-the-patients-post which makes me, as a patient, feel so discounted...

Does anyone else feel used?

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Agree? Disagree?
Share your experience or join the conversation!


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Photo © showleopard1 / iStockphoto.com

July 7, 2011 at 3:55 pm
(1) Jody Schoger says:

During the Avastin hearings last week a thought ran across my mind. It wasn’t a good thought, either. Even though I felt like a heel I had to ask whether or not the patients who testified had paid their own way. I tweeted this.

It was abundantly clear that we weren’t hearing much from those who had suffered the dangerous side effects, because many had died. Dead women can’t testify.

The entire process of the use of Avastin for breast cancer needs to be held up to the light: 1) the advanced approval to begin with (from a trial that wasn’t itself designed for FDA approval); 2) the overwhelming negative evidence followed by Genentech’s decision to appeal. It doesn’t take long to begin connecting the dots. The patients were asked to tell their cancer stories, and they did. Where they asked to explain how it was they decided to come forward? There’s a lot that did not meet the eye.

At the end of the day, this has been an expensive and draining process and we’re no farther along in helping the majority of women with metastatic breast cancer.

That’s the bottom line.

Thanks, Tricia.


July 7, 2011 at 4:32 pm
(2) David Miller says:

The advocates should have stated whether they paid for their own trip or not at the beginning of their comments. Didn’t the FDA require this?

At the Provenge CTGT AdComm hearing, maybe one of the advocates who spoke had their way paid by Dendreon. At the various Provenge protests around the country, everyone paid out of their own pockets to attend.

While company support of advocacy groups is a concern, we cannot let that diminish the very, very valid input patients can provide into the regulatory process. Frankly, there is not enough patient input into the process — especially with Pazdur’s crew at the FDA.

Finally, FWIW, there is no such thing as a pure, objective measure in oncology. Overall survival is tarnished both by subsequent therapy and underlying morbidity of patients. Response rates are biased against drugs who are able to stabilize, but not shrink tumors. Progression-free survival is biased against drugs that confer a survival benefit without preventing tumor growth. Name an endpoint, there is a bias to it.

In this respect, so-called “anecdotal” patient information is no different. The only difference is biostatisticians and clinicians haven’t figure out good ways to “number-ize” and standardize those anecdotes like they have with measures we consider “more traditional.”

Instead of resisting quality of life endpoints, Pazdur’s crew should be requiring them. After all, one can argue that improved quality of life is more important to the PATIENT than shrinking a tumor (ORR), preventing it from growing (PFS), or (in some disease stages) extending life (survival).

David Miller

July 7, 2011 at 5:09 pm
(3) Kate Murphy says:

The same thoughts occurred to me.

First of all, why were these incredibly passionate patients convinced that Avastin was responsible for their good outcomes? All had chemo in addition.

Where did so many “Avastin saved my life.” comments come from. At the very best no lives were saved, survival time wasn’t even improved.

And who paid for the trips? Chose the speakers?

And where was the media coverage of the advocates who spoke up on behalf of of evidence against Avastin for breast cancer?

Patient advocates were tarred with a very black brush last week. We should have received better.

July 7, 2011 at 6:21 pm
(4) David Miller says:

“At the very best no lives were saved, survival time wasn’t even improved. ”

The first assertion isn’t likely to be true and the second is true only for a non-selected patient population. Bench science indicates Avastin should have a positive effect on breast tumors. Just like Herceptin, it clearly does not have a positive effect on overall survival in a non-targeted population of breast cancer patients.

It is not well known that Herceptin’s first randomized trial was a failure. Some people said it didn’t work and should be abandoned. Instead, Genentech did work to find out how much HER2neu expression was “enough” and ran a second randomized trial enriching their patient population with that biomarker. The result was a critically important advance for cancer patients.

Erbitux, Avastin, Iressa, and a legion of other drugs still in development will have meaningful therapeutic indexes only in targeted populations. The FDA, particularly Pazdur’s branch, needs to deliver on their long-delayed biomarker development guidance.

With that in hand to make a clear pathway for biomarker/drug combination approvals, debacles like the Avastin ODAC panel (both of them) could be reduced. Better still, the higher therapeutic indexes inherent in targeted populations means patients are more likely to get better outcomes and less likely to endure side effects for no meaningful benefit.

David Miller

July 7, 2011 at 9:16 pm
(5) Marilyn Mann says:

Trisha, thanks for the support. I need to make one clarification. The PR person has only been lurking in the Facebook group — she hasn’t posted anything that I am aware of. What she is interested in is finding some FH patients who will tell their stories to journalists in order to raise “awareness” of the disease. I assume Genzyme hopes this will help them by getting more FH patients diagnosed (and potentially treated with mipomersen, Genzyme’s drug that is in development).
I have no problem with FH patients talking to journalists, of course. What I object to is a drug company pulling the strings from behind the scenes (and potentially slanting the press coverage toward their point of view).
Best, Marilyn

July 8, 2011 at 6:44 am
(6) Matthew Herper says:

It’s important to note that there were certainly patient advocates who argued that the risks of Avastin do not outweigh the benefits. See this press release from Share: http://www.sharecancersupport.org/advocacy/advocacy_news_views/a_win_for_breast_cancer_patients_1/

July 8, 2011 at 1:41 pm
(7) Marcia Purse says:

I know absolutely nothing about the Avastin controversy so won’t comment on that, but the Facebook story is, indeed, creepy and sinister. Just at the time when three big-name researchers at Harvard were severely disciplined for accepting – and not reporting – huge amounts of money they received from drug companies for doing research, now we have Big Pharma sneaking into Facebook in a way that suggests they may start *using* people with serious illnesses?

Having read recently about the FDA reviewing their approval of the antipsychotic drug Abilify because the study on which that approval is said to be seriously flawed, I feel there’s something seriously wrong with the system. In so many cases, a 6-week trial is simply not sufficient to prove a drug’s safety and effectiveness, for example.

July 11, 2011 at 12:47 pm
(8) Joyce Bichler says:

Conflicts or interest and biases should be of concern when evaluating any and all information concerning cancer drugs and treatment. This is why Breast Cancer Action never accepts any funding from any company that profits from cancer. Agree with us or not, you can at least know we’re not influenced, directly or indirectly, by the pharma industry. We were one of the patient advocacy organizations that did testify against the approval of Avastin for breast cancer – we did an extensive look at the evidence and Avastin does not hold up for benefit over risk for metastatic breast cancer.

July 28, 2012 at 12:04 am
(9) Suzy says:

I have a question, regarding Facebook, the internet in general, and pharmaceutical companies…

I have a physical disorder, and unfortunately, the only way (so far) to treat it
is with medication. I take about 4 different meds per day. I don’t know why
but after I started going on internet, saying things on message boards, etc, I
started to get bombarded by Pharmaceutical this, pharma that in Canada. Do you think that it’s possible there are people gathering info about you and your meds, so they can try and treat you “better?”

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