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Mar-Apr 2009 Briefing

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In This Briefing:
The Raptiva Problem
FlakeHQ Interviews: Catie Coman, Director of Communications, National Psoriasis Foundation
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The Raptiva Problem

March 5, 2009 — There are now three reported cases of PML (progressive multifocal leukoencephalopathy[1]) being associated with the use of Raptiva (efalizumab). Last October the first associated case of PML became public knowledge at around the time Genentech, the manufacturer of Raptiva, released a “Dear Healthcare Provider” letter[2]. Virtually all biologics prescribed for the treatment of psoriasis come with warnings about the increased risk of infections, but PML is particularly unsettling because, once unleashed, its brain infection is usually irreversible and fatal.

PML is caused by a virus that most of us “catch” before we’re 10 years old. It’s called the JC Virus, or JCV. Virtually all of us have immune systems capable of suppressing serious infection from JCV. We catch it, we shut it down, we carry it around in that particular state of half-life viruses can occupy for years. We don’t give it another thought. We grow old. We die from other causes. Few things can undo our self-resistance to JCV’s nastiest consequences, but among these few things is suppressed T-cell action in the immune system.

All of us have suppressed immune systems every now and again. Battling other infections, assorted illnesses, autoimmune diseases and many drugs suppress our immune systems. Usually, JCV doesn’t wake up when this happens. Raptiva is the only currently popular biologic for psoriasis that has been associated with what is probably a reactivation of  JCV in these three patients.[3] Nobody knows, yet, precisely how that works. Raptiva has proven to be a miracle drug for some folks with severe plaque psoriasis because it inhibits a certain ‘communication’ between T-cells in the blood. The particular mechanism — the particular piece of the T-cell communication process that the mechanism modifies — is unique to Raptiva. Other biologic medicines focus on other parts of the immune response process. This fact, along with medical histories of three patients with active PML, makes a strong suggestion that Raptiva is involved in the problem.

Genentech has been ahead of this bad news since last Fall and the man in the path of most of the slings and arrows is Dr. Ivor Caro, Medical Director of Dermatology at Genentech (South San Francisco, California). I spoke to Dr. Caro on March 4. “We have considered the [PML] patients’ histories, especially with other immunosuppressant drugs and it does appear that Raptiva was the only agent that suppressed their immune systems at the time they became ill with PML."

In Europe, sales of Raptiva have been stopped. When I asked about the U.S., Caro said, “We are in constant, on-going communication with the FDA on how to continue to notify the health provider and patient community of this risk.” 

“Based on our study of the PML cases,” Caro said, “we know that all three had been using Raptiva for over two years, two were over seventy, and one was in his mid-forties.” These observations have made it into the warning language and Caro said, “I hope doctors will seriously consider these facts when prescribing Raptiva.” Does that mean no one should use Raptiva for more than two years, or beyond the age of forty-five? That’s a decision to be made between patient and doctor.

We psoriatics are taught to “take charge” of our disease and a part of doing that well means knowing what treatments are available and what are the associated risks. In late 2008 there were about 23,500 psoriatics in the U.S. using Raptiva and about 1,820 of them had been on the drug between 2 and 3 years. Statistics are a poor tool for making life-threatening decisions, but for what it’s worth, that means 1 in 7,834 psoriatic users developed PML and 1 in 607 users who had been on the medicine over 2 years developed the disease.

We would like to know a lot more about how Raptiva awakens latent JCV — or enables new JC Virus to invade and infect the brain. In the meantime, we gamble. The odds are best when we are younger and don’t use Raptiva for more than two years. As we age and use the drug longer, apparently the odds get worse.

For further reading:

1.       Penetrable articles about PML include

2.       News release about Genentech’s ‘Dear healthcare provider’ letter appeared in FlakeHQ in October:

3.       Raptiva is not, however, the only drug to have apparently re-activated JCV and caused PML. TYSABRI (natalizumab), a drug for multiple sclerosis (MS) offered by Elan and Bio Idec has also been associated with PML cases and fatalities. It was pulled off the market for awhile, but is being offered again again with FDA prescribed warning language.


FlakeHQ Interviews: Catie Coman, Director of Communications, National Psoriasis Foundation

Background. Here's the deal. Nobody talking about psoriasis today on the Web is unaware of the National Psoriasis Foundation. They launched their 'version 1' web site in 1995 or 1996 and almost overnight a few million lonely scratchers became a 'hood. Today, is the largest and most popular patient-directed psoriasis site on the Internet. The Foundation claims to be a membership organization for psoriatics in the U.S., but the minute they launched the web site the whole world became their audience. I'm not suggesting the Foundation was insignificant before its web days. The Foundation was launched in 1968 and grew steadily into a non-profit with a proportionately large constituency and a national voice that made a difference. But compared to the post-web thrill ride, the first quarter century was pretty placid.

At about the same time the Foundation was going through its infancy, a small but influential rush of new treatments and therapies for P was beginning. Drugs like cyclosporine and methotrexate were 'noticed to improve psoriasis' and were being looked at as marketable to that constituency. New ways to use light to improve psoriasis were invented and widely applied. Serious interest in alternative therapies were bringing about scholarly assessments in areas like climatotherapy, eastern medicine, and naturopathic approaches. Dietary P treatments — some of them quite persuasive — were gaining followers. The National Psoriasis Foundation kept abreast of all this and the rest of the world found 'tuning in' to was The Way to stay in the know.

The 1990s was the decade during which web addresses (universal resource locators, a.k.a. URLs) became 'must haves' throughout the full panoply of modern enterprises. Following in the wake of the National Psoriasis Foundation — and somewhat hidden by that great ship's shadow — came rafts full of home-grown web sites built by, and for, and about psoriatics and their diseases. Already the real currency of wealth on the web was "links," not money, and those of us serious about making our psoriasis web sites widely read beseeched the Foundation to put links to our sites on We had no real bargaining power, though, because reciprocity didn't apply: we all HAD TO link to; not to do so would have made us too disconnected to be worth discovering.

At some point in the early 2000s, an axe dropped within the Foundation and suddenly there were NO links to smaller non-organization-connected sites. The official explanation of this ran something like this: "We" (the Foundation) "are being inundated with requests for links. Far more than we could possibly accomplish. Rather than try to impose some arbitrary set of parameters around linking-to-X or NOT-linking-to-X, it seemed fairer for all involved for us just to limit our links to other non-profit organizations of strategic interest to the psoriasis community, and other sites that contain important regulatory, scientific and medical information of value to the community." (Though I used quotes, this is, of course, a paraphrase of an oft-repeated position, expressed in different ways.) At the beginning of 2008, this was pretty-much the way the relationship existed between the National Psoriasis Foundation and our high-churn population of independently owned and operated psoriasis web sites, blogs, and online communities (like We didn't have to love the National Psoriasis Foundation for its hands off us policy, but we still had to like them, depend on them, echo their knowledge and presence of mind on our own sites.

But in the Spring of 2008 something interesting happened. I talked to my sponsor about the possibility of holding a meeting in which a handful of better-known non-NPF psoriasis web site proprietors would discuss the advantages and disadvantages of "collaborating" in some fashion to add strength to patient advocacy. Very quickly in this initial couple of conversations it became apparent the real "key" to making such a collaboration work would be involvement, on some level, by the National Psoriasis Foundation. And that is how I came to meet Catie Coman.

Coman. Coman had been in her position as director of communications for the Foundation for only a few months when we first met by phone. I had called to propose a session at the 2008 Foundation Annual  Meeting. I proposed a roundtable of independent and affiliated web site providers gathered to discuss (debate, argue) the subject of collaboration toward more effective advocacy for research dollars, access to meds and public awareness. Coman said the Foundation's web site was being completely revamped in 2008 and she liked the panel idea. She agreed to represent on that panel. At the annual meeting in Orlando, our group met three times, the first was a private meeting to discuss how we would conduct our session on the Foundation's meeting agenda, the second was the roundtable session in front of an audience, and the third was a next steps strategy session. Coman — despite her insane schedule at the annual meeting — managed to participate in all of our group meetings and drop a very welcome revelation while she was among us: Coman actually wanted a way for the Foundation to direct its web readers to the variegated population of independent web voices out there. So, together we determined a way for alternative psoriasis web sites to introduce themselves to readers. It will happen through a new common gateway called 'PSites.'

Rather than describe why I and others on the roundtable team left Orlando elated, this update's interview with Catie Coman lets her bring the message — and more — to you in her own words. Click here to go directly to the interview, or click here for the FlakeHQ Interviews homepage.

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Diverse topics in this update's Mail ... New installment in Clara's Spouses' Corner ... New poetry from Sherry Sheehan.... Enjoy! -Ed