So, I went to my first (maybe only in my lifetime!) focus group for small cell vasculitis patients. It was supposed to include WG and MPA patients.

There were only two of us, which is WAY smaller than any focus group in which I have ever participated before. There was supposed to be a third, but she couldn't make it because she got ill (surprise). The researcher told us that it is virtually impossible to recruit for these studies, and it's really not surprising when I see chapter leaders in the VF complain about having meetings with only two or three people -- anyway, the whole point is that it just shows you how rare this disease is when you could only get two people and you are recruiting from a tri-state area (New York, NJ, CT) that has 15 million people?!!).

Anyway, we were clearly there at the behest of a big pharma company. We weren't filmed (my new weggie friend works for the city in some capacity -- she was a first responder at 9/11) and it's not allowed in her job. They asked us to tell our stories of diagnosis and she had been through the wringer, as I had, before diagnosis (ironically, or maybe not so ironically, we are both patients of Dr. Lebovics). She is in the process of getting out to CC per his advice, and is working with a local pulmo here (as I mentioned in the other thread). I'll say no more about her because I've encouraged her to come here and she has the right to tell her own story in her own way.

They gave us advertising copy to respond to, and it was interesting. They were trying to gauge (I think) whether WG patients want to think of themselves as very sick people whose entire lives were put on hold by these disease and need a drug to 'rescue' them or whether or not they need a drug to help them be in more control of their disease (active vs. passive). So, if you are a follower of advertising at all (as I am), half sounded like depression ads (rescue me) and half sounded like RA drug ads (I've got things to do; I can't be sick) She and I had almost opposite reaction to each message, which may be because she was very ill at one time and isn't in remission yet, and I wasn't nearly as ill and am in remission now. Or, it may simply be our personalities.

Anyway, it will be interesting to see what drug this is -- I'd imagine that they are only repurposing an old drug for a new use. In fact, they weren't sure if I was qualified, since I'm on mtx, so I'm thinking that maybe they are looking to market another RA drug for WG. Should be interesting.