October 2002 Briefing

Year of Living Breathlessly

Flakers may look back on 2002 as the "year of living breathlessly." Breathless, that is, in anticipation of a handful of promised new drugs that have been startlingly successful in trials. Most of these drugs fall under the new category, "biologics," meaning they are derived from living cells, not synthesized from non-living chemicals as are most pharmaceuticals (Xanelim [now called Raptiva], Amevive, Remicade, Enbrel — search on any of these terms from the FlakeHQ homepage).

For awhile we were confident Enbrel would become available to us in 2002 but this is looking less likely (click here for story). Amevive has also been lingering on the "threshold of approval" for some weeks. Maybe/maybe not by the end of the year. The hype has been so great for both of these that both can anticipate floods of prescripts when they become available. (There are about 20,000 of us on the waiting list for Enbrel.) Immunex has already made a mess of Enbrel availability and we should not be surprised if availability is an initial problem with Amevive or any of the other new drugs as they achieve FDA approval for sale. We must remember that neither our disease nor our population size will "move mountains" in the drug disbursement industry. By comparison, flu vaccines get out there in a flash.

We also need to temper our anxious anticipation with remembering that none of these drugs are a cure, nor are they likely to be effective for 100% of us. While every severe flaker should probably try one or more of these biologics — because they're safer than the most powerful drugs currently used for P — some percent of us will find them ineffective or not worth the price.

We also need to remember the long term effects of taking these drugs is not known. There will be continuing studies about this, only now all of us taking the drugs are subjects of the extended trial and are paying for the privilege. We should be prepared down the road for additional reasons why some of us should NOT take these drugs. This isn't a conspiracy; it's the way the system works.

So Where IS the Cure?

Some of us remember when excitement focused on gene research towards a cure for P. Why has this moved off Page 1? Well, it's a long story and I'm not qualified to tell it, but here's my take on the current situation.

We all would have been very happy if a single gene had been discovered that activated the particular immune system misbehavior that makes P. Focusing on one gene would have been a treat. But that wasn't in the cards. Now a few genes are very surely suspected of playing a role and there is a likelihood that more genes, just not identified yet, are also involved. How must each of these genes behave — singly and in concert — to ignite P? That's harder to determine. And, potentially, development of a therapy to alter all the necessary behaviors in just the right way, is more complicated still.

One of the possible consequences of finding multiple genes associated with P is a total reconsideration of the nature of the disease (and a possible clue to why so many people find so many different things effective in palliating their flaking). What if there are multiple and distinctly different genetic actions that directly or indirectly command the immune system to ignite flaking? Does each of these different genetic actions constitute a separate disease/condition and a different approach to a cure? Unanswered questions, but the musings might point to reasons why one flaker's "cure" is without consequence to another.

Trying to associate all of these questions to the moment reveals only one certainty, and that is a gene therapy for psoriasis isn't going to happen soon. Hence it's off Page 1 for awhile.

And should we mourn this as a set-back? Not me; not with the spate of new drugs on the immediate horizon. In fact, here's what I choose to worry about: If the new biologics are as good as promised, if we don't find some awful long-term use problems with these new drugs, we all might be so happy with the results — lesion-free skin — that our interest in and support for the genetic research diminishes and its progress is crimped. The old out of sight, out of mind syndrome. Let's not let that happen! -Ed