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Sep-Oct 2008 Briefing
Last update I “Briefed” at length about the National Psoriasis Foundation 2008 Annual Conference and the workshop session I was chairing titled “The Future of Psoriasis Advocacy on the Internet.” From my standpoint, it went very well and, as is so often uttered when concepts become plans, We have our work cut out for us.
In the weeks and months ahead we are going to be organizing an informal “consortium” of people who communicate about psoriasis, and advocate on behalf of psoriatics, on the Web. We are working up a mission statement, and it’s not ready to share with the world, yet, but I think I can say what has motivated our plan to create this “consortium.” Simply put, we think we can be more effective at accomplishing three broad goals in our Web endeavors if we work together. Those three broad goals are:
For the time being, we are still calling ourselves PAWSC (Psoriasis Advocacy Web Sites Collaborative) but almost everybody on the roundtable and at surrounding sessions said that name/acronym “made their eyes glaze over.” So we’re working on something better name-wise, too. Meanwhile, if you would like to read more, see a couple of photos from Orlando, and sign up for our mailing list, click here. Or, address inquiries to me: [email protected].
Patient compliance is a big complaint among doctors. Some of you will recall my interview with dermatologist Dr. Steven Feldman; he said he didn’t mind when patients didn’t use what he prescribed, he just wished they would tell him. Other doctors are not so diplomatic. Chiroproactor John Pagano, author of the famous and difficult diet for psoriasis, states emphatically that if you don’t eat exactly as prescribed (at least in the beginning of treatment) you won’t get well.
Over the past month I received two emails associated with compliance. Keith H. wrote in to say using curcumin topically “won’t work” the way Sherry S. described it in Trying Tumeric and her poem, Artful Home Brew. He went on to talk about some “clinical research” conducted by a doctor (whose name he did not share) for whom he did web work a couple of years ago. According to this doctor’s research (no quotes or link to it), the herb (or some portion of it) must be based in some kind of “gel.” He went on to lambast all of us for not knowing all about this but listening to charlatans instead. Hmmm.
Then I received mail from Tasos in Cyprus about Kalawalla (search on "Kalawalla" from the home page if you want to review the flurry of correspondence from 2004, 5 and 6). He wrote, “Kalawalla [an Organic Hope product] seems to be effective if instructions are followed properly. The recommended dose is 4 capsules per day and not one, as one reader pointed out, and it takes at least three months to see the actual results.” I’m assuming Tasos is quoting the use instructions provided by Organic Hope.At least we’re uniformly non-compliant across the dividing line between prescription and over-the-counter palliatives.
I’m touching on this story late in the game. Word’s been out since early February that Centocor (makers of Remicade) are nearing the end of the drug approval process for this hot new biologic, and as I write this we are awaiting approval. Unlike TNF blockers (including Remicade), presumably Ustekinumab will perform as well or better by targeting different proteins with immune system functions. And it’s supposed to require only 1 shot every 12 weeks. That’s great. Can’t wait to learn what it will cost.
Abbot and the National Psoriasis Foundation are behind a new campaign — Stop Hiding — that features singer/actress LeAnn Rimes. The web aspect of the campaign is pretty impressive check here and here.
If I had to define the objective of the campaign, I’d say it is to mobilize the suspected-large-population of folks with psoriasis who don’t see a dermatologist, don’t belong to the National Psoriasis Foundation, and don’t do much to palliate their condition. In my opinion, this is a great idea. We need that kind of “goosing” to grow the ranks that will compel more support for research toward a cure, more equitable access to treatments, and better public awareness about psoriasis.
Go Abbot ... Go Foundation ... Thank YOU, LeAnn Rimes.
I invite you to enjoy this update’s contribution from poet Sherry Sheehan, NO WAY TO LOSE. I won’t ruin the delight but offer this little teaser: perhaps psoriasis would not be so bad if shedding all that skin actually made us weigh less.