A Weggie Focus Group

[JanW]

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.

[Psyborg]

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?

[JanW]

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.

[Sangye]

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.

[Luce]

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.

[JanW]

"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.

[Elena]

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.

[Sangye]

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. :angry:

[JanW]

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.

[DEE]

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

[JanW]

Dee -- I meant no offense, only responded to what Sangye said, that the condition was invented by pharma companies to sell drugs.

[DEE]

no offense taken just wanted to let people know it is reality in my case
one i could do without

[Sangye]

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
Dee, the symptoms of urinary urgency and incontinence are real and sometimes they need to be addressed with drugs. However, overactive bladder isn't a syndrome, it's symptoms that can be caused by a number of different things. For example, eye pain and headache aren't a syndrome, but are symptoms that can be caused by eye strain, sinus infection, Wegs, brain tumor, etc....

A pharmaceutical company invented a drug that could help with urinary incontinence and urgency in some instances. They realized there weren't enough people who really needed it for them to make a profit, and they knew people didn't want to hear ads asking if they had incontinence, so they invented the term "overactive bladder syndrome. " They try to convince everyone that it's an actual syndrome, that it's very common, that it always requires drugs to treat it, and that the drug is highly effective. None of that is true.

Like anything else, if you have these symptoms it's important to find the cause and not just take a drug to mask the symptoms. I imagine it's very difficult to live with and I'm sad that you have those symptoms. Chiropractic can be very helpful with bladder issues, since nerves control the bladder function. Several months ago I had a bladder issue that looked like neurogenic bladder (a condition where the bladder loses its nerve control so you don't have any sensation of a full bladder; opposite to your symptoms). It was easily resolved with a handful of chiropractic treatments. Had I gone to a neurologist with those symptoms they would have rung a lot of alarm bells.

Here is an excellent article from the European Urology journal that describes the issue of overactive bladder "syndrome" and the pharma hype very well.
http://www.urosource.com/fileadmin/European_Urology/Editor_s_Voice/PIIS0302283804005226.pdf

[ScreaminMeanie]

Not advocating Big Pharma in any way, but I suffer from RLS. I was diagnosed when I was in my 20s (long before I had WG), but the only treatment for it then was quinine. I didn't like taking the quinine, so I didn't. I just stopped going to movies in theaters, as that was the circumstance where it was most likely to act up - never when my feet were elevated, only when I would sit for more than 45 minutes or so at a time without moving around. Sometimes on long drives, too. In any case, I just worked around it rather than taking drugs for it. It's really awful when it's happening (uncontrollable leg movements), but the rest of the time I don't even think about it. Since I've changed my habits to avoid having "episodes," I rarely have them anymore, and I pretty much forget about it most of the time.

[Jack]

I'm sometimes a bit of a sceptic when I read some of Sangye's crusades against the pharmaceutical companies while I also know full well that they are only driven by profit. That is just one of the facts of Capitalist life. However, I support her position 100% on this one. These companies are always trying to invent socially acceptable conditions that require treatment with their drugs and never point out that there are may be a dozen possible underlying reasons for the symptoms which should be investigated first.

[Sangye]

ScreaminMeanie, they are symptoms, not a syndrome or condition and only rarely do they require pharmaceutical treatment. Those symptoms can be caused by several things-- magnesium deficiency, vitamin B deficiency or imbalance of the various B vitamins, iron deficiency, vitamin E deficiency, circulatory stasis in the legs, imbalance of nutrients involved in calcium absorption and utilization, acid/base balance, liver stress, parasites, emotional stress, food or chemical sensitivities (MSG is a big one), spinal misalignments, nerve damage etc....

People with serious nerve damage are probably the only ones who might actually need the drug. Otherwise, this is something commonly treated and resolved by holistic docs.

Your description of having symptoms in the movie theatre and on long drives indicate that it's probably a simple circulatory issue brought on by prolonged sitting with legs low--circulatory stasis. When you're in situations like that, do periodic calf raises and rotate your ankles to keep the blood flowing before the symptoms appear. Get up and walk before symptoms hit, too. This is what's recommended for people on airplanes to avoid blood clots, which also happen due to circulatory stasis.

[Sangye]

I'm sometimes a bit of a sceptic when I read some of Sangye's crusades against the pharmaceutical companies while I also know full well that they are only driven by profit. That is just one of the facts of Capitalist life. However, I support her position 100% on this one. These companies are always trying to invent socially acceptable conditions that require treatment with their drugs and never point out that there are may be a dozen possible underlying reasons for the symptoms which should be investigated first.
LOL! I don't mind being a crusader.

Holistic docs often say "If they knew what we knew, they'd do what we do." So many of our ailments (everyone's, not just Weggies) are easy to correct naturally. Very few require drugs, yet we are brainwashed into thinking the opposite-- that we should try drugs for everything first, and only go to "alternative" docs if the drugs don't work. We ignore or lose sight of the fact that the very people doing the brainwashing have enormous financial incentive.

[pberggren1]

Yes, the drug companies are in it for the money for sure. It is one of their main motives. I agree with Sangye 100%. I have a friend that works as an executive for the worlds largest drug company and some of the stuff he tells me would make your blood boil. But modern mainstream medicine is about control of the population as well.

[drz]

Yes, the drug companies are in it for the money for sure. It is one of their main motives. I agree with Sangye 100%. I have a friend that works as an executive for the worlds largest drug company and some of the stuff he tells me would make your blood boil. But modern mainstream medicine is about control of the population as well.

Unfortunately this profit motive often interferes with what is best treatment. For example many so call senility and dementia cases in nursing homes are effectively "cured" by taking the patient off most of their meds. Many other cases can be effectively treated with vitamins and minerals supplements too but there is no money in pushing them so often the patient goes untreated or gets treated with some expensive new medicine that does little to help the patient.

[Sangye]

Ditto to that! In my practice I saw far more people who were on drugs they didn't need than people who needed to be on a drug but weren't. There were good uses for each of the drugs, but they were being doled out like lollipops by the MDs.

[Jack]

I think that some doctors almost feel obliged to send you out of the surgery with some sort of prescription. If you just did as you were told, I'm sure you could end up taking a huge cocktail after a while. The last time I went to the ER to get my torn ligament checked out they seemed almost apologetic that I would not need any treatment other than pain relief. They seemed surprised when I was pleased and said that I would sort it out for myself if nothing was broken.

[drz]

I think that some doctors almost feel obliged to send you out of the surgery with some sort of prescription. If you just did as you were told, I'm sure you could end up taking a huge cocktail after a while. The last time I went to the ER to get my torn ligament checked out they seemed almost apologetic that I would not need any treatment other than pain relief. They seemed surprised when I was pleased and said that I would sort it out for myself if nothing was broken.
Some patients feel cheated if they don't get some pill to take. Many of the better physicians dole out lots of placebo prescriptions just to make the patient feel better. Lots of research studies on drugs and treatment find the placebos are just effective as the treatment or drug being studying. That is why a new drug has to prove it is more effective than a placebo drug in order to get certified as being effective for what ever it is suppose to treat.