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July-August 2005 Briefing
Themes in This Month’s Mail
The biologic drugs now available for treating P are also the most expensive self-administered drugs for our disease. They are so expensive ($12,000-$15,000 per year) that each of the manufacturers know their financial success rests on the acceptance of their product by insurance providers. Based on email to FlakeHQ, it's evident those manufacturers are doing their job — but there is lots of work remaining.
An interesting but not surprising increase in email about alternative therapies is occurring parallel to all the buzz about biologics. This is because lots of flakers don’t have access to the new biologics — many are un- or under-insured — and when they find an alternative that works they are eager to share it.
In his FlakeHQ interview two months ago, Dr. Feldman stated — I’m paraphrasing only slightly — that if an alternative was clinically proven to be effective it wouldn’t be an alternative anymore. An example of this is the glucosamine phenomenon for osteoarthritis. For years it was an alternative herbalist dietary supplement with claims to help the most common form of arthritis. It took all those years for the anecdotal evidence of its value to motivate the concoction of a clinical trial. Now my rheumy “prescribes” it and no doubt many others do, too. But the glucosamine story is the exception, not the rule, for alternative therapies breaking through to conventional acceptance.
Many if not most of the widely known alternative regimens for P defy clinical testing for a number of reasons. The famed “Pagano” therapy is one of these. While J. O. Pagano is best known for his “diet,” that is only the major step in his Healing Psoriasis: A Natural Alternative. In my May-June Briefing I discussed an article about a clinical test of this diet that used 5 test subjects. When you consider the thousands of test subjects involved in biologic clinical trials, you can understand the statistical insignificance of the 5-test-subjects trial. If the clinicians involved in the diet study had decided to test the entire Pagano regimen, they probably would have had difficulty obtaining even 5 test subjects. Yet, over time, thousands of highly motivated people have found the entire Pagano regimen is their solution to flaking.
“Over time” is the key hurdle for many of the alternative therapies. Clinical trials are hugely expensive, and the longer they last the more expensive they get. If the promise of a successful long-term clinical trial is anything other than a sensational new drug that can be sold under monopolistic guarantees from the FDA for at least awhile, the drug manufacturers are less likely to undertake the initial expense of the trials. It would seem to me nearly impossible for the entire Pagano regimen to ever be put in a pill.
In this month’s Mail four exchanges are about biologics and six are about alternative therapies. With all due respect to convention, there seems to be several ways to skin this cat.
Good News from Psoriasis Cure Now!
Those of us on Michael Paranzino’s email list learned about an extraordinary win for Our Cause last month. The U.S. House adopted Paranzino’s language verbatim (from his testimony reported in last month’s Briefing) in its Report to NIH (National Institutes for Health) to do more on psoriasis and psoriatic arthritis. Here’s a link to key excerpts: http://www.psorcurenow.org/house.php.
Sheila Rittenberg: This Month’s FlakeHQ Interview
An insider had informed me that Rittenberg was a shaker and mover inside the National Psoriasis Foundation. I thought the title, “Director of Advocacy,” begged an explanation. Well, I got my explanation and can say with confidence that Sheila Rittenberg is a shaker and mover. After conducting this interview, I’ve never felt better about paying my dues to the National Psoriasis Foundation.
Ed’s Raptiva Adventure — Finally
On Raptiva, posted here this month, talks about biologics and my past six months using one of them — Raptiva. It has been a truly extraordinary experience, in the sense that it has been dissimilar to any other P therapy I’ve undertaken. I’m still taking Raptiva because my skin is nearly lesion-free and I’m not worried about my liver or kidneys failing as a result. You can read my report by clicking on the link above or from the Articles page.
The dog-days of Summer