Briefing (December, '00)

Mark Your Calendars: Live Web-Chat at PsorHeads on Saturday, December 9th!

Chat transcript now available:  Go to PsorHeads.com and click on "transcript" in the right-hand column.

I have an itch, and it’s psoriasis-related, but it hasn’t anything to do with a flaking lesion. It’s the kind of itch I get when something’s afoot ... when something is about to happen that I think I’m really going to like. Part of my itch is the imminent arrival of the new National Psoriasis Foundation web site — about which we are going to chat on Saturday, December 9th. But that’s not my whole itch.

Another big part of my itch has to do with all the drug trials and psoriasis research going on right now. I truly believe there is light at the end of this tunnel. Something effective is bound to emerge out of the new pharmacological focus on the immune system’s role in P. A drug is (or drugs are) going to emerge that will be as effective as methotrexate or cyclosporine in stopping lesions, but with far fewer potentially nasty side-effects. And that means, even though our P may not be cured, more of us won’t have to wear it on the outside all the time.... The research into the genetic aspect of our disease may take longer to yield anything concrete, but when something concrete does emerge it will probably be seminal. By "seminal" I mean the first therapy we’ve invented that can be considered a true remedy — something that fixes the cause rather than palliating the symptoms.

These two sources for my current itch aren’t mutually exclusive. I’m so excited about the NPF’s new web site because I think we are going to need it — desperately — if we are going to realize the rosy future I see coming out of the research and drug trials. Let me turn gloomy for just a minute and share some of my fears:

• The most effective drugs may be priced sky-high
• Insurance companies will insist less-expensive therapies are exhausted before authorizing costly newer drugs or regimens
• Attempts may be made by insurance companies to "quantify" degrees of suffering from P and make claimants "qualify" according to severity for more expensive treatments
• As usual, whether or not you get affordable access to these new treatments will depend on where in the world you hang your hat
• Docs and derms will be slow to wield the new treatments

The way we are going to combat any of these hurdles — if any of them become reality — is through informed and organized response. NPF is giving all of us (members and non-members alike) the greatest group communications vehicle yet created by mankind. And the beauty of it is, while it stands ready to spread alerts at the speed of light and turn grass roots response into nearly-instant action, it’s going to be a downright fun place to hang-out!

NPF is handing us the potential to be a persuasive body in what happens to psoriasis research and treatment. But we’re the ones who are going to make it work. They’ve built it, now we must go make it a community.

To this end, I am excited about the opportunity to host a web-chat with Sheri (Sherith) Decker and Bill Taggart of NPF on Saturday, December 9th, at PsorHeads. Sheri is the editor of the NPF Bulletin and Psoriasis Resource and also the Assistant Director under whose management the Foundation’s web presence has come to be. Bill is the managing editor for the publications and the producer of the new www.psoriasis.org. (He may not call himself a "producer," but wrangling the cast of thousands, and the Olympian efforts that contribute to the site we’re about to enjoy, is, in the jargon of media, a producer function. Put another way: Bill has a very responsible position with respect to the web site — if anything goes wrong, he’s responsible.)

I hope you will be able to join us for this Web-chat with Sheri and Bill. As moderator, I’m going to try to coax them into sharing their innermost hopes and dreams for the web site in addition to giving us tips on how to make the most of its resources. For background before the Web-chat, read:

NPF Launching New & Improved Web Site

Click here to learn about how this Web-chat will work, what to expect, and how to participate.

*****

I’d hoped to have a-little-something-special to offer y’all as my seasonal gift this month. Last year at this time I gave you "Alex and the Mouse" and the shocked responses from you anti-rodent-eaters were really fun to receive. Alex (my grand daughter) is a year older now (7 yrs), and considers last year’s "Mouse" a sophomoric production. Which is, in part, why I don’t have a new one to give you right now. Alex concocted something on the order of Gone With the Wind, but financing hasn’t fallen into place, yet. So, in case you missed "Alex and the Mouse" last year, here it is again without a new-and-improved sound track.

Happy Holidays to All, and let’s chat on the 9th! -Ed

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