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Where’s the Research News?
from Laken I.

Dear Ed: You have not had much to say about psoriasis research since you published your interview with Liz Horn in January, 2007. Have all eyes swung to the media hype surrounding biologic treatments? How much closer have we come to a cure for this icky disease? –Laken I.

*****

Ed’s Response: Glad you asked, Laken (but somewhat embarrassed that you had to). I hope to post an interview within the next few updates that will catch us ALL up on what’s going on research-wise.

It would seem that we are spending most of our communications energy following the successes and disappointments of this new type of P treatment called “biologics.” But that HAS BEEN very news-worthy. At the turn of the millennium the early entrant drugs in this category were being touted as permanent solutions to our chronic condition – sometimes even before they’d been approved by the FDA. That means the drugs could be “taken for a lifetime” and “keep us lesion free.” (The frequently made comparison was Type 1 diabetics using insulin to stay alive for more-or-less normal life spans.) 

Now that there are several of these drugs available for P, and as a class they have been with us for over half a decade, they’re still newsworthy but for a wider variety of reasons. As a class of drugs they are proving NOT TO BE a lifetime solution for many flakers. Like everything before them for these people, they work for awhile then “wear out.” And then there’s the on-going issue of their uniformly high cost. The vast majority of uninsured flakers simply can’t afford the four-figure monthly outlay these drugs require. Finally, headlines about adverse side effects have been showing up in the news. This is always alarming, no matter how statistically significant or insignificant the number of cases.

As one of those people who have enjoyed nearly lesion-free skin and pain-free joints thanks to biologics, I can attest to the fact that my passion to keep up with research toward a true cure has diminished. This is not to say I don’t care. I DO CARE, deeply, and am well aware that any day my honeymoon on biologics might end or I may become unable to pay for them. I would be dismayed to learn research toward a cure had languished while I and a few hundred thousand other flakers “felt better.”

I suspect, but won’t really know until after I nail that upcoming interview, that research is plodding along as well as can be expected when funding and other kinds of support are like watering places in the dry season (i.e., too small and sometimes barren). Of a sudden, you may have noticed, all horns tooting the promise of gene-directed research have gone silent. When I asked Horn, in December of 2006, about the “promise of gene therapy for psoriasis,” she said, “Gene therapy remains a possibility for psoriasis therapy. We just need to understand the genes that cause psoriasis. There are many talented scientists trying to answer this question.” If I’m not mistaken, gene therapy is a possibility for any disease that’s caused by something the body does to itself, because genes and the things that make them “express themselves” are the mechanisms of life. While Horn’s language made “understanding the genes that cause psoriasis” sound merely a matter of time, especially since many talented scientists are on the job, I think it obfuscates the mounting challenges that complicate the process. It was explained to me once like this:

When we learn about nature we are talking about things that are too small to be seen and too large to be seen as well as all the things that can be seen. We are also equipped to see precisely in only one direction at a time while, in fact, nature encloses us all around, like a bubble, and everything is connected. So, when we peer and probe in the one direction we can see we are blind to consequences elsewhere. We search for causality within our field of view and that might not be where it exists. So, we really are like an ant on an elephant, trying haplessly to define what thing it is upon which we are perched. -Ed

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