November-December 2004 Briefing

POWER over PSORIASIS — Genentech’s Road Show

The makers of Raptiva, one of the new biologics approved for the treatment of P, are touring a two and one-half hour evening road show right now titled “Power over Psoriasis.”  I attended the program in Nashville, Tennessee on Tuesday, October 26.  There were about thirty psoriatics there and between twelve and twenty “presenters” — meaning people from Genentech, people who manned booths at the “health fair” portion of the evening and actual speakers on the program.  According to the program planners I talked to, this was a fewer-than-average crowd for this program.

I don’t attend many programs like this, but have been to enough of them to know what I like.  I like to hear something I haven’t heard before.  And I’ll really appreciate having attended if what I haven’t heard before excites me.  Genentech’s “Power over Psoriasis” scored for me on both points.  But first, the evening in brief....

Registration for the evening began at 5:30 and was free (I shouldn’t fail to mention that!).  The sit-down program didn’t start until 6:30 , so between registration and start-of-show there was a “health fair” to browse through.  This was an area with finger-foods, soft beverages and coffee, stand up tables, all surrounded by skirted tables where local health care outfits passed out literature and leave-behinds and talked about themselves (and listened while we flakers talked about ourselves).  All the exhibitors here were somehow connected with dermatology, research, or pharmaceuticals distribution.  The make up of the “health fair” will be different in every city hosting a “Power over Psoriasis” meeting, but I imagine the type of exhibitor will be the same. 

A few moments before 6:30 we were directed to the adjacent room where more than enough rounds sitting eight each awaited.  A professional audio system had been set up, computer-projected slides were ready to go, a platform stage with podium, and speaker table were lit to draw our attention.  Each place at a round was set with a snack plate, a silverware and napkin set, water, iced tea and an impressive info-kit including pen and stress ball. 

Genentech’s program was well thought out.  They used a doctor (Jeffrey Fisher, Pathologist) to moderate, an articulate psoriasis patient (Lyle Newcomb) to talk about living with P and finding relief on Raptiva, and a dermatologist (Michael Gold) to explain why and how Raptiva works and where it fits into the family of drugs and treatment regimens for P. 

The formal presentations lasted two hours ( 6:30-8:30 ) and on the Dewke scale of how boring did it get, it never drifted into the red zone (boring).  One thing that hadn’t anything to do with the presentations, but helped keep the program lively was use of an audience response system.  Dr. Fisher would ask questions and everyone keyed in their multiple choice answer on remote-control sized devices set at each place on every table.  The answers were instantly available as bar graphs or pie graphs on the big screen that was also used for presentation slides. 

Dr. Fisher “pre-tested” us on knowledge about P and biologics.  Then, after the formal presentations, we were tested again.  We were a pretty smart audience to begin with — scoring over 70% correct most of the time.  Then, after the presentations, we scored in the high 80s or 90s.  Just like acing the written exam prerequisite to getting a drivers license doesn’t mean you’re an expert on traffic law, Genentech’s use of the audience response system and pre-testing doesn’t mean we’re ready to become licensed dermatologists (Dr. Fisher joked about this).  But it was a strong graphic suggestion that we learned something.  It was a good “meeting technique.”

Lyle Newcomb, the patient presenter, came before Dr. Gold on the agenda for a reason that became clear with the first sentence he spoke at the podium:  “Isn’t it nice to be gathered with a group of people who know what it’s like to have psoriasis?”  He was talking to us, about us, as one of us.  In Lyle’s 15 minutes the stigma that we flakers wear like a hair style got exposed and, as a result, lost its power to diminish us.  “I call psoriasis an insidious and debilitating disease,” Lyle said.  Most of us, at some point in our individual histories with P, were led to believe we shouldn’t think of P this way.  It’s not cancer ... It’s not likely to kill you! ... You could have any number of diseases that are much worse....  Yet here was a man, a working stiff but nearing retirement, a grandfather, who talked about being diagnosed in his late twenties, who tried everything he could over the years, found nothing satisfactory — at least not for long — and who eventually “succumbed and withdrew” allowing P to govern how he dressed, where he went, what he did. 

The thirty of us at this meeting who flaked listened to Lyle and heard our own stories being told.  He was a version of us, but for the moment it was his courage that allowed P to be called “insidious and debilitating” and all of us clenched our teeth, furrowed our brows and agreed with him.  Damn it, Lyle’s right.  Before the evening concluded, I think every flaker there shook Lyle’s hand.  “Raptiva cleared me,” Lyle explained towards the end of his talk.  “I’ve been taking it since 2001 and I’ll continue to take it as long as it continues to work ... as long as I can....  I can’t tell you it will work for you, but I can encourage you to find out for yourself.”

Dr. Gold came next and Lyle had us ready to listen, eager to learn, itching to accept and exercise whatever power over psoriasis Dr. Gold could hand us.   Dr. Gold’s speech lasted about 30 minutes and was supported by slides I’m sorry we didn’t get copies of (they contained way too much information to absorb well in their few minutes of “life” on the big screen).  However, I think what I found most interesting about Dr. Gold’s presentation wasn’t made explicit in one or any combination of the slides. 

“Psoriasis is a chronic condition,” Dr. Gold said, “but most of the treatments aren’t suited to this fact.”  He went on to explain that most treatments for P are intended to get you clear of lesions, at which point you stop the treatment, or tone it way down until the lesions come back.  So it has always been a cyclical process, a depressing lifetime of having better days and worse days.  This has been necessary because most drugs that really worked had side effects too serious to allow taking them in perpetuity.  “At least some of the biologics are finally changing this,” he said.

“Diabetes is another chronic disease,” Dr. Gold explained.  “And people with type 1 diabetes take insulin.  They know they are going to take insulin for the rest of their lives.”  That’s what a chronic disease is: a disease that’s going to require countermeasures for the rest of your life. 

Of the three biologics currently approved for treating psoriasis — Amevive, Enbrel and Raptiva — only Amevive has a limited course of administration (12 weeks).  Both Enbrel and Raptiva are to be taken as long as they work.  That could mean in perpetuity.  Lyle Newcomb said his lesions had started to subside as early as his third weekly injection of Raptiva, shortly thereafter he got clear and has remained clear for over three years.  He says he has no intention of stopping his weekly Raptiva injections. 

After Dr. Gold’s presentation, Lyle Newcomb and Dr. Fisher returned to the stage to handle audience questions as a panel (Fisher moderating, Gold and Newcomb fielding questions).  We wrote our questions on cards that had been supplied in our info kits. 

The last session of the meeting was billed as a “Special Lifestyle Presentation.”  It featured a head chef from a well-known local restaurant.  In Nashville, this was Robert Price, Executive Chef at the Wild Boar restaurant.  We watched Chef Price prepare a pheasant dish and a bean dish.  He mentioned, as he worked, that he’d done some “on-line research” about psoriasis and “eating healthy” is important. (That was about it for relating his segment of the evening to everything else!)  The cooking demo ended with a drawing.  Another fellow at my table won a $100 gift certificate to the Wild Boar.  The Chef ended by saying he would “walk around” his dish of pheasant and beans for us to look at.  So weren’t we surprised when the back doors to the room opened and here came the waiters and waitresses with a dish for each of us!  (And it was, of course, delicious.)

From 8:30 to 9:00 we ate succulent pheasant, chatted with the speakers and each other and, once again, the health fare was “open” and more finger-foods were laid out for those with insatiable appetites. 

According to my contacts at Genentech, each of these meetings will be slightly different.  They will use local dermatologists and a local Chef and, of course, the “health fare” exhibitors will be local.  Most crowds, I was told, would be larger than the one in Nashville.  Click here for a schedule of Power Over Psoriasis meetings.  The last one this year is scheduled for November 18 in Indianapolis .  Genentech will be passing location information along to me as quickly as things are firm and I will continue to update the page with the schedule.  I’d also be interested in hearing from any readers who attend.  How did your experience compare with mine?

Speaking of Raptiva — It's Been Approved in Germany

Serono, a Geneva-based biopharmaceutical company, has introduced Raptiva for psoriasis in Germany.  This comes on the heals of permissions being granted by the European Union.

In the U.S., Raptiva is co-developed by Genentech and Xoma.  Serono owns the rights to sell the drug outside the U.S. and Japan.

Hopefully, Raptiva will soon be available in other member countries of the European Union. 

World Psoriasis Day & Patient Proclamation

If you happened to log on here the last week in October you saw a notice about October 29th being "World Psoriasis Day" and encouraging you to go to a web site and leave your email address as signature on a "Patient Proclamation."  

The "day" has come and gone, but the initiative is just building steam and I encourage all flakers to visit this web site and sign the proclamation:

http://www.worldpsoriasisday.com/global/11_proclamation/index.html

I believe strongly that flakers everywhere share a few global imperatives — one of which is seeing to it that the new biologic drugs are readily available everywhere (and I use the term "available" it its economic sense, meaning both available for the asking AND affordable).  The World Psoriasis Day initiative has the potential to move us forward on this and other global imperatives that I hope to write more about in upcoming months.

New Poetry from Sherry S.

Sherry S. has been delighting and enlightening us all with poetry that reflects the flaking life since the turn of the millennium, and with this update she continues to do so with two dry-witted gems.  Guaranteed to make you smile (and probably grimace, too), be sure and read "The Daily Deal" and "What Didn't Work For Me" by clicking here or visiting the Flaker Creativity Page.

-Ed