Monday, January 14, 2008

Which comes first, the drug or the disease?

Today's NYT reports that Pfizer has begun direct-to-consumer advertising for their drug, Lyrica. It's not a new medication, having been approved for some time for the treatment of nerve pain (as experienced by some people with diabetes or shingles).

What's news is that the advertisements are for a new indication: fibromyalgia. Fibromyalgia is a condition for which no definitive diagnosis exists, and its cause and mechanisms are not understood by medical science. People who have it, most of whom are middle-aged women, complain of chronic, widespread pain and tenderness, as well as extreme exhaustion.

But whether fibromyalgia really exists is a contentious issue. Those who suffer from fibromyalgia insist that it is a real, and debilitating, problem. Numerous advocacy and support groups exist online and offer individuals the chance to compare notes with fellow sufferers. Skeptics charge that it is essentially a psychosomatic complaint--i.e., "it's all in their heads."

A few features of this story are worth comment (in my view, anyway). One is that we should be aware of the long-standing tendency of the medical establishment to minimize symptoms it can't explain by saying they are psychological--i.e., not "really real," and outside the purview of "real medicine." Many of these conditions (like irritable bowel syndrome, multiple chemical sensitivity, and chronic fatigue syndrome) tend to affect middle-aged women more than other groups. Coincidence? Maybe. But maybe not. Either way, it's worth thinking about whether these issues are being too easily dismissed.

Another is the influence that pharmaceutical companies have in our society over what "counts as" illness or disease. On one view, if there's a drug for it, then it's a disease. Thus shy people may actually suffer from social anxiety disorder and require Paxil; short people might have idiopathic short stature and need human growth hormone; and the list goes on. Is this trend toward medicalization a good thing? What does it mean, in practical terms, when we move a condition from the "some people are like this" (normal human variation) column into the "people who are like this have a disease" (illness) column? Who benefits from those effects?

One more thing to consider: the challenge of pain. As a subjectively experienced phenomenon, it's tough for medicine to deal with. Most medical problems are objectively measurable in one way or another, but pain is particularly tough to pin down. People have different pain thresholds, experiencing more or less pain in response to the same stimulus. It's been the standard view for a while now that women experience pain differently from men, though whether these differences are biological or social (or both) is still unclear. And the data source for pain? We mainly have to rely on self-report--and as a general rule, science doesn't like self-reported data. But the flip side could mean denying needed relief to people who are suffering ... and who wants to do that?


Kelly Hills said...

As a chronic pain sufferer (CRPS/RSD and neuropathy, here), I've been watching the Lyrica progress with curiousity. A few years back, I was part of the gabapentin/neurontin group, where my doc ended up prescribing it to me off-label (it's an anti-seizure medication). A few years later, and after I had rotated to other medication, I learned that neurontin wasn't actually approved for use to treat my specific kind of nerve pain, and moreover, that studies indicated it didn't help. The only positive study? Paid for by the pharma company promoting it.

It was a lesson I needed to learn, but has left me rather bitter towards anything that's not strictly proven to deal with the sort of neuropathic pain I cope with. (And given that CRPS/RSD is probably the most misdiagnosed and misunderstood of the chronic pain syndromes, there really isn't much out there proven to help.)

Anyhow, on the one hand I'm hoping Lyrica might be shown to be useful in multiple chronic pain syndromes - but on the other hand, my experience with gabapentin has left me very wary of drug company propaganda on this sort of thing.

Helen said...

I have found that FM is often an indication of undiagnosed celiac disease. More rarely, it responds well to a diet with higher protein and reduced carbohydrates (about 80g per day).

One of the most difficult issues of working in nutrition, is getting money to do the research to prove ideas like this is very difficult - because it doesn't lead on to pills and potions that can be sold!

Sue Trinidad said...

Yes--great point about how research funding works. It's one of the reasons I choke every time I hear someone say that science is value-neutral. Deciding which questions are worth pursuing--in a universe of infinite possible questions and limited resources--is a morally freighted act.