FlakeHQ Interviews:

Phil Aaronson

San Francisco Bay Area Short Sleeve Day Organizer

Interviewed by Ed Dewke
in August 2007

This month something new is going on in the psoriasis community across the United States: Psoriasis Cure Now, the D.C.-based lobby organization working tenaciously for more funding from government for P-research, and better access to drugs for all flakers, has dubbed Saturday, September 15, 2007, the first annual Short Sleeve Day. Those of us supporting the idea are going to “go sleeveless” that weekend and, if we happen to be sporting some visible lesions, so be it. We’ll be happy to explain them to any and everybody who asks or looks like they might want to ask. Activities have been planned in several cities — you can peruse the list here: http://www.psoriasis-cure-now.org/ssd/ At this site you can also read more about the overall initiative and what it intends to accomplish.

One of those cities where a fund-raiser is occurring is San Francisco and Phil Aaronson is the volunteer organizer. He tells the story of how he came to be in this role in this interview. And he tells more, including a recap of his insurance battle when he started using a biologic drug, and about life as a part-time professional musician. You can read Phil’s musical bio here: http://www.slipperypeople.com/bio_phil.html

The good news is, unlike most FlakeHQ interviewees, those of you in the Bay Area have a very public opportunity to meet Phil Aaronson as part of the Short Sleeve Day benefit he’s put together. Consider this your “invitation”:

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Dewke: Tell us a little bit about your own psoriasis. How long have you had it? What kind? How do you manage it?

Aaronson: I was first diagnosed when I was 18 with plaque type psoriasis. Had some instances previous to my first full plaques, but when I started to develop several large plaques what we were dealing with became readily apparent. The medical community would classify it as "moderate,” but it really came down to this — several large, stable plaques that would not respond to treatment. Locations were typical — shins, elbows, torso, back and scalp. I had tried EVERYTHING before going on a biologic — steroids (topical and injected), coal tar, UVB light treatment, Donovex, etc. I never went the methotrexate route — the risks seemed huge — but I'm happy to report I'm about 99% clear on Raptiva. In fact, I've been on it for three years and have cut back on my frequency of dosage. I take an injection once every 14 days.

Dewke: How did you get involved with Psoriasis Cure Now and Short Sleeve Day?

Aaronson: Well, you'll have to thank my insurance company! I switched jobs, and the wonderful folks at Blue Cross California decided to put up every hurdle imaginable before approving my medication. When I did the research and realized that only about 60,000 people were receiving biologics, out of a possible 1-2 million moderate to severe psoriasis sufferers, I wanted to help get the word out!

Dewke: Can you provide a few more specifics on the hurdles Blue Cross Blue Shield presented when you switched jobs? Of course, what we all want to know is how you changed their minds.

Aaronson: Insurance companies are funny. They all seem to have different criteria for what constitutes a moderate to severe case of P. In California, Blue Cross and Blue Shield are two different entities. Blue Shield had approved me for Raptiva rather easily, but Blue Cross wanted proof of a failed response to UVB treatment and a systemic medication such as methotrexate. I understand the need for methotrexate to control very serious outbreaks, but it is essentially a wrecking ball on your immune system with many black box warnings. It would be ridiculous for someone who is classified as a moderate psoriatic to take methotrexate, but that is part of the evaluation criteria for Blue Cross. My Dermatologist, Dr. Norman Price, personally intervened on my behalf to get me approved, and I am grateful to have such a fine doctor in my corner.

Dewke: Tell us about your music career and what else you do for a living (until your music career takes over). Are you a Bay Area native? If not, from where do you derive?

Aaronson: This question gave me a bit of a chuckle. The Psoriasis Cure Now organization knows me as that “musician guy on the West Coast who is organizing a cool music night for the cause...” The truth of the matter is I'm an Instructional Designer and Facilitator for VMWare in Palo Alto. I work extensively with the sales organization on techniques for demonstrating ROI (Return On Investment) to both new and existing clients. The company is fantastic, and our virtualization software is the industry leader. Music is my muse — I've been playing several instruments since I was a teenager, but at 36, I can't imagine trying to make a living at it. One of the great things about San Francisco and the Bay Area is the freedom to maintain an artistic life even while pursuing what some might term a [more] serious career. But honestly, the thought of trying to pay my mortgage while playing for peanuts and touring in a converter van sends chills up my spine!

As for my background, I grew up in New York City (Flushing, Queens to be exact), went to Bronx Science, and attended my undergraduate studies in Education at SUNY Plattsburgh. After moving to California, I finished up my Masters in Educational Technology at San Diego State. I chalk up my success on the left coast to being “New Yawk Driven” with an appreciation of Californian consciousness.

Dewke: You call your gathering to occur on Friday, September 14, a “cool music night for the cause” — or, I guess that’s what the Psoriasis Cure Now folks are calling it. Tell us more.

Aaronson: Well, since Short Sleeve Day is officially Saturday, September 15, we're starting a bit early on Friday Night, September 14th at the El Rio nightclub in San Francisco's mission district. Part fundraiser, part awareness raiser, part night out on the town! We have two bands lined up: My band, DarkWave, will perform all of your favorite new wave classics from the 80's. We hit the stage at 9:30. The second band is Japanese Baby–a tribute to The Cure. Yep, we're going with that 80's theme, but shouldn't an event for Psoriasis Cure Now feature music by The Cure?

Dewke: What do you hope will happen as a result of Short Sleeve Day 2007 in San Francisco?

Aaronson: Well, out here in Benefit Town (it's San Francisco — you can't really travel more than ten yards without hearing the rallying cry of “Save The Fill-In-The-Blank!") Us P-sufferers have had a decidedly low profile. I, too, have been guilty of hiding my P — not so much out of embarrassment, but more from a place of being tired of explaining — “No, it's not The Plague. It's Psoriasis!” I'm hoping that greater understanding and a higher profile will lead to a more common knowledge of P by the general public. I'm also hoping my band gets booked again ;-)

Dewke: What’s the audience capacity at the El Rio? Should folks come early to be guaranteed a seat?

Aaronson: The El Rio is a fantastic neighborhood spot! There are two bars and an outdoor patio in addition to the performance space. While the performance area capacity is about 100 folks, you can always have overflow crowds on the adjacent patio. Overall, the place can accommodate around 300 people.

The owners are super friendly, extremely supportive of benefits and causes, and the crowd is a meeting of the tribes — men, women, straight, gay — it doesn't matter and it doesn't discriminate. I can't think of a better place to raise the flag for Psoriatics. We're preaching tolerance and understanding with Short Sleeve Day, no?

Dewke: Thanks for taking the time to be interviewed, Phil. I hope you’re getting lots of pics at the benefit and will share some with us.

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Also see:
www.elriosf.com
www.psoriasis-cure-now.org

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