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On Sheri Decker Interview and
Hi Ed, I just came from catching up on your latest update [Jan-Feb], thanks to your reminder note through PsorChat.
I was, as you suggested, fascinated with the interview with Sheri Decker. Two things in particular struck responses:
1. My personal guess about the problems getting WHO involved with P is that I suspect they, and for that matter most if not all broad-based wide-spectrum health organizations strongly tend to concentrate their attention on communicable diseases, particularly the ones with strong potential for epidemics. That's unfortunately one of the biggest barriers we've always faced: P tends to get a what-the-heck reaction from most of the medical field.
But there are, some times and places, some rather oddball exceptions. As you might remember, I'm permanently and totally disabled (from the viewpoint of employability) from brain injury about ten years back, and every two or three years my insurance company wants a re-evaluation to approve continuing my benefits. My family doctor keeps giving my P prominence in those, and I keep trying to get him to down-play the P so that it doesn't provoke a "and what are you doing about it?" reaction from them.
2. The comments about lack of services and supplies in places like, e.g., Africa, was interesting in one particular context. As an update to my last letter, we actually do have a new derm in town, still "opening" his practice in the sense of accepting new patients. He's from Ethiopia (or at least his surname is), and presumably won the immigration/licensing conflict I'd mentioned. Or maybe never went through it: I've learned since then that the licensing hang-up only applies to certain countries.
He put me on UVB, which I did faithfully 3 times a week until my "chauffeur" left for the holidays in mid December. But I'm gonna ask him to let me stay off, since this time around the lights badly aggravated dryness-itching, which has improved greatly since I stopped, and there was no noticeable improvement in my P. It's widespread but, in my opinion, stable, so I'd just as soon go back to my tried-and-true Vaseline plus occasional topical betamethasone for any severe itching.
I went back and re-read your article from last summer about Raptiva. Its Phase-3 testing was a little unusual because it was actually killing two birds with one stone, so to speak. The main purpose, of course, was to demonstrate the long-term effects of the drug itself, but it was also to demonstrate that it could be reliably self-administered. My fine-motor coordination is shot since my head injury, so I elected to skip that part and have them do the injections (so naturally got only about half the "normal" stipend).
That half- (or whatever-) strength starter dose was primarily to eliminate the most common side-effect problem they'd originally had: really wicked headaches. I'd been turned down for testing before they later discovered that if the starter dose was low-strength, subsequent doses could be nearly any strength with virtually no risk of headaches at all.
Think I've rambled more than enough (what else is new? <grin>).
Best, -Mike B.
Ed’s Response: Your thinking on why WHO isn’t paying much attention to P — because ours isn’t a communicable disease — is certainly logical. But I haven’t checked the list to see if any non-communicable diseases are listed. Hopefully the International Federation of Psoriasis Associations (IFPA) is suggesting in their argument to WHO that the loss of human productivity caused by P is an “economically communicable” problem.
One of the issues we face as an “intelligent species” is the high cost of short-circuiting the natural law of survival of the fittest. We care about who lives and who dies and the medical profession is devoted to usurping this natural law, but to do so comes at a high cost — perhaps even higher for people who suffer debilitating conditions but don’t typically die from them. According to Sheri Decker, in her Jan-Feb ’06 interview[0106intv.htm], there exists indigenous populations outside the influence of western civilization where people with psoriasis may still be ostracized from their villages. That’s one way to solve the problem — especially if those exiled flakers are burdens on their relatives and neighbors. In general, we find such situations appalling, but to change them is expensive and, until P is cured, will remain expensive.
Thanks for reminding us about why the “conditioning dose” of Raptiva is so important. A quick perusal of the archives here — search on “Anti-CD11a” — serves to remind what a significant problem headaches were for people participating in the original trials leading up to Raptiva. I religiously followed the instructions about my week-1 conditioning dose and experienced none of the onset adverse effects. As a result, I had no problem continuing on Raptiva for a full year (my worsening psoriatic arthritis not withstanding) during which my skin cleared and my finger and toenails returned to normal.
Good luck with your new derm, Mike! -Ed