January 9, 2007

EFF, Linking, and Drugs With Side Effects

I saw the press release from EFF today regarding their defense of a person who linked from a web blog to an "internal" document by the producer of a prescription drug.

I don't know the case or its merits, although I generally believe that the EFF stands on the right side of most things.

My own feeling is that the drug producers simply do not publish adequate information for physicians or patients to evaluate the benefits and risks.

I had a recent very bad experience with a prescription drug - Cymbalta (duloxetine hydrochloride).

This drug is often prescribed as an antidepressant.  It is also prescribed for neuropathic pain.  It's "on label" use is for diabetic peripheral neuropathic pain, but physicians are able to-, and do-, prescribe it for other kinds of neuropathic pain, although that is "off label" (and insurance companies often use that as an excuse to avoid paying for it.)

For the last year I have had severe neuropathic pain that has significantly interfered with pretty much everything.  (I undergo surgery for it this week.)

In an effort to avoid surgery we went through the whole standard litany of things from physical therapy and osteopathy to spinal epidural injections (made me sick - and even gave me hiccups for three days!), oral anti-inflammatories, acupuncture (Adam White in Capitola is great!, but the relief was only temporary), etc, etc.

I've been poked, pinned, electro-shocked, and even put onto something that I swear is the modern day version of "the rack".

So the doctor suggested Cymbalta.

I read all the normal papers that come with the drug and that are on the web.

So, feeling that I had made an informed choice, I went ahead and one evening took a tablet.

My gawd!  The next 12 hours were a horror of anxiety and psychotic delusions.  I had enough contact with reality to realize that I was in trouble, but I was unable to articulate that realization and ask for help.  It was a very scary experience.  I did not take another dose.  But I did re-read the materials from the drug vendor and did not see anything that would have warned me.

Two weeks later the continued pain drove me to consider whether my bad experience with Cymbalta was perhaps a fluke caused by something else.

So I tried again.  Same horrible result.

I have since learned that others have had similar psychotic episodes from even a single dose of Cymbalta.

I have since mentioned my experience to several doctors and physicians.  Most were interested; I got the impression that some had already heard similar reports.

I consider Cymbalta to be dangerous - I can readily comprehend that someone under its effects might jump off a bridge or otherwise harm themselves.

Now, I realize that good is often leavened with bad and that drugs are not panaceas and that they come with risks.  I am glad we have access to modern drugs - the world is a better place because of them.  However, it is my belief that doctors and patients do not have adequate information about the side effects of Cymbalta.

Movies and books to the contrary, I don't believe that the pharmaceutical industry is necessarily evil, I'm willing to give them the benefit of the doubt.  And I fully understand that they must recoup their expenses and make a reasonable profit.

However, I feel that because it is so very important that doctors, patients, and researchers have access to full data, even if it is anecdotal and obtained through less that perfectly controlled experiments, that the scope of copyright protection afforded to documents related to prescription drugs should be measured using a broad scale of social value rather than any limited scale of commercial protection.

And thus I feel that in the case that the EFF is undertaking that there is great merit in giving the benefit of the copyright doubt to the web blogger who links to drug information.

Certainly had I known in advance that Cymbalta might cause me to become a raving, psychotic lunatic, capable of drug induced self-harm, I might have avoided my first encounter with it.  I would have most definitely have avoided my second.

Posted by karl at January 9, 2007 12:42 AM