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Thread: A Weggie Focus Group

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    Default A Weggie Focus Group

    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.

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    That is very interesting. It's weird that they'd advertise though, with the rarity of our disease you'd think that advertising would almost be pointless. I guess maybe very directed advertising?
    ~ Bob

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    That's what I'd assume. Maybe something as basic as buying a list from the VF, and sponsoring the Symposium. Certainly not general magazine or tv stuff.

    The other thing to consider is that they are potentially creating a lifelong user, and that's worth something.

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    Wow, interesting stuff, JanW. I'm a "get me back on the horse" kind of person.

    I hope your friend joins our group. I'd love to hear her story and any connections she's discovered about 9/11 and Wegs.

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    Wow, this all sounds a little strange to me coming from England where prescription drugs are not advertised on telly - you go to a doctor and he tells you what you need, you don't go to a doc and say I saw an advert and want to try this new medication. I'm also fairly sure our doctors aren't visited by drug company reps trying to sell their products, we tend to be issued with generic brands where possible and I don't think our pharmacies make a conscious decision to stock one manufacturers drugs over another - its usually whats cheapest that counts.

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    "Ask your doctor about" advertising is also fairly new here -- maybe the last decade or so, or even less. It's highly effective---as most good advertising is. To the extent that it alerts people to medical conditions that they have for which they might not known there was a treatment (something like overactive bladder comes to mind) it's not a bad idea I think. Or, for depression meds where there are lots of choices with significant difference in side effects. I hasten to add, before anyone comes in to say it -- to the extent that you believe these conditions can and should be managed with prescription drugs.

    That having been said there was clearly one scary ad: "Vasculitis is ALWAYS lurking" one ad that (I thought) made us all sound like invalids "You have to miss your son's soccer games and family gatherings," one that just made me sad "you long for more good days" -- they could all have been effective as is evidenced by the fact that I either had really strong positive or negative reactions to them. The whole conversation was certainly emotional for both of us at certain points --- that's the goal of the researchers as well. This kind of advertising needs to hit you in the gut.
    Last edited by JanW; 12-09-2010 at 06:41 AM.

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    Wow, I agree with you Luce. Sounds so strange. There's no such thing as advertising prescription drugs in Norway either. Through law we're supposed to try the cheapest alternative first , unless we've got documentation that it's important to get a specific brand , therefore sometimes the pharmacies tries giving out some cheap version of a drug at first.

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    JanW, did you know the whole overactive bladder "disorder" was invented in order to sell a drug? It's well-documented. They had a drug and then had to convince people that they had a condition that required it. "Restless Leg Syndrome" is another. TV ads are not there to help anyone. It's profit through and through. There is already abundant material available via news, magazine articles and online sources for the public.

    Luce, it's absolutely sickening how the pharmaceutical reps are in the doctors' offices all day in the US. A family member who's a medical physician said they send him and his wife to conferences in 5-star hotels, on cruises, etc... whether or not he prescribes their drugs! Even for someone with strong ethics, it would be hard to resist such sheer bribery. People are spending so much money and swallowing pills they don't need and that rob them of their health.... Ugh. I have to stop thinking about it.

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    Sangye, I'm going to have to agree to disagree on this one. While overactive bladder and restless leg might be bogus conditions (who knows, I don't have either thank God) I do disagree that there a great deal of information available in as user friendly a format as advertising. I think advertising reaches people from all walks of life in a way that most other mediums don't come close to touching -- whether your see that as good, bad or morally neutral depends on where you are coming from.

    The pharma reps in doc's offices are a different issue, and I do think that's an area that is ripe for abuse.

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    belive me overactive bladder is real and not a bogus condition i have it they think it may of been caused by taking cxt for a long period or pressure from pred weight gain
    either way it can be painful and defiantely embarassing at times another thing i have to deal with on a dauly basis which i had no problem with before wg

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