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Big Pharmaceutical Companies and Psoriasis (and FlakeHQ.com)
Ed - I am about your age and both a P and PA sufferer. I am in the moderate range for skin and joint involvement. I've been struggling with ointments and the P has gradually been worsening. So now I am facing more drastic treatments. However, I have great distrust of the profit motive collaboration between the medical and the pharmaceutical industries. I see no incentive for the Big Drug companies to find a cure for psoriasis. In fact, I see them only as legal drug pushers, who want the P sufferer hooked on their expensive maintenance drugs for life. I have visited the NPF website and have been struck by the conflict of interest of its heavy funding by nearly all of the "Biologic" drug pushers. Are the side effects of knocking back your immune system with these potent systemic drugs being properly reported or are they being suppressed? I would really like to know. The stakes have been raised by a statistical study released last week stating severe psoriasis will take years off your life. The study was funded by — you guessed it — Big Drug. I view this as an attempt to scare the undecided psoriatics into the arms of the drug pushers of the Biologics. I was dismayed to read your acknowledgement in which you cite being funded by Genentech. It seems Big Drug has its hands in everything. I thought you might be an independent voice. Someone has to speak on the obvious conflict of interest between seeking a one time "cure" (with no further profits) and the huge incentive to preserve treatments with lifelong outrageously expensive but also outrageously profitable injections. And that doesn't even address the side effects. I call it a deal with the Devil. How can you, in good conscience accept this funding? I would really like to hear your thoughts on this issue.
I am also curious if the media production company you work for has any contracts with any of the Pharmaceutical companies?
My own personal observation of Big Drug in action: It concerns a psoriasis ointment called Dovonex. The ointment worked fine for me especially when combined with a generic cortisone ointment also prescribed by my doctor. Warner Chilcott used to make Dovonex ointment. However, its patent on the ointment is running out at the end of the year, so the marketeers decided to create Talconex, which is their own brand of mixing Dovonex with a cheaper cortisone, presumably with a new patent. With a marketing flourish they declare the ointment is "micronized" to deliver the two ingredients more effectively. Dovonex was expensive enough at nearly $200 a 60 gram tube. Then the profit suckers decided to DOUBLE that price for Talconex and it is made of HALF of the expensive Dovonex and half of a cheaper generic cortisone. This is like tripling the price. Then Big Drug WC turned around and eliminated Dovonex ointment so there would be no competition from mixing it yourself. WC still offers Dovonex cream and National Psoriasis Foundation forum letters and I unanimously agree that it is not as effective as the ointment. I don't see a generic Dovonex ointment in sight yet. This is just a small example of Big Drug tactics. It is all about profit and legal expensive addiction, and NOT about cures.
-A P & PA sufferer in Maryland
Ed’s Response: Thanks for your thoughtfully composed email. To be honest, I've expected many more challenges since accepting my first grant from Genentech, the manufacturers of the expensive biologic Raptiva. Let me address that, first.
Genentech has never asked me for any editorial favors and I don't think they would. On rare occasions they've sent me meeting announcements or news releases and I have posted these. When I get similar items from others who do NOT give me grants, I post them, too. A perusal of my archives (search on the term "Raptiva" or any of the other biologics) should demonstrate that opinions are posted, both for and against, all of them.
The high cost of the biologics has been a consistent complaint of mine since the advent of Enbrel. If I thought refusing assistance from Genentech would have some positive impact on the cost to the consumer of their biologic Raptiva, I'd forgo the funding. I believe, though, that the maintenance of FlakeHQ, which Genentech's grants help accomplish, has a more positive effect. Genentech is not the only pharmaceutical company to support general, non-product-specific advocacy. In fact, most major manufacturers of psoriasis drugs do. How does Genentech benefit from helping to support FlakeHQ? Well, to the extent that this site contributes to the knowledge and awareness of people with psoriasis, it contributes to their specific awareness of biologics. Informed flakers influence their own therapies and treatments by asking questions. They ask each other (sometimes through sites like FlakeHQ) and they ask their doctors. If Genentech's particular drug for psoriasis is worth using, this fact will come out as those questions are addressed. And that isn't advertisement — it's correspondence. I don't view this as a scare tactic. Big Drug could be much more frightening through mass media, by producing spots they control completely — through editorial and distribution tactics.
Your Dovonex+Corticosteroid v. Talconex (vit.D derivative+corticosteroid) ordeal does sound maddening. As I was taking both Norvasc and Lipitor (BP/Cholesterol, respectively), my doctor recommended I switch to Caduet, which combines the two. His idea was I'd save money on my insurance co-pay. WRONG. My copay was higher for the combo than for a generic Norvasc and Lipitor prescripts separately. Go figure. Quite honestly, if my prescription insurance were to go away tomorrow, next month I'd be taking NONE of the psoriasis medications I'm currently enjoying. Do I have a problem with that? You bet. I've reached the age where I no longer need a high-powered telescope to see RETIREMENT in my future. Working with elder in-laws, I've become aware of the current and proposed sacrifices for prescript coverage by Medicare. What I sense, and have uttered in writing here a number of times, is many hundreds of thousands of people with psoriasis are UNDER-TREATED because they can't afford what would really help them. And of course the high cost of drugs is a part of the problem. (I expand on this in my postscript to Chapter Two of Flake: Confessions of a Psoriatic.)
For the record, the media company for which I have worked for twenty years has had pharmaceutical clients (none recently and none of the "big names" in psoriasis prescription meds). Our media work hasn't been for consumer advertising or public relations. It's always been for internal corporate communications and training.
The last point you made is worth a lot more discussion. You wrote, "It is all about profit and legal expensive addiction, and NOT about cures."
So far, none of our systemics for psoriasis are very “addicting.” They all seem to have life spans — periods beyond which they lose effectiveness. We simply can’t take methotrexate or cyclosporine indefinitely (because they are toxic), and reports are starting to stream in that the biologics “wear out.”
The prescription drug business isn't about cures. We should consider any drug that IS a cure some sort of modern miracle. Truth is real "cures" are hard to come by and nearly impossible to derive money-making enterprises out of. Why? Because you can only sell a person a cure once-per-ailment! There's hardly any sense at all in publicly owned — or even privately owned — pharmaceutical businesses conducting research towards cures. No, the pharmacy business is about controlling symptoms, thwarting discomfort, prolonging remissions and delaying relapses. They aren't villains, because they don't invent diseases, and trouble follows when they become careless with potentially addictive substances. They have accidents lots of times, though far fewer than you might expect when you consider their lack of control over when and how their products are prescribed, and by whom. Cures — true cures — tend to come by accident, or by research not motivated by the business of making drugs. When there IS a cure for psoriasis, is anyone likely to make money from it? If all 140,000,000 psoriatics in the world were able to pay $100 for the cure, that would amount to $14-billion. After the cost of research, testing, manufacturing and distribution, the remainder would probably not even fund research towards the next cure for something else. This is not to suggest we won't someday have a cure for psoriasis, just that it is unlikely to come from purposeful pharmaceutical company research. It will come from elsewhere and be funded other ways, which is why initiatives by the National Psoriasis Foundation and Psoriasis Cure Now are so important. Meanwhile, the medicines sold by the pharmaceuticals, and their ongoing research to offer better, more effective medicines, help us flakers lead better lives until a cure is discovered. No, the price isn't right and no, availability isn't ideal, which is why we should work to improve both.
Thanks again for writing. -Ed