Newbie questions....

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby itsjustme » Fri Jan 04, 2008 11:51 am

coomoob wrote:
NHE...I work in medicine and have to the Micomedex here at work...which has all of the information that you mentioned as being in the "secret compartments." That information has been a god send to me...as I've just been diving into the internet and library here at work trying to learn as much as I can about MS....especially the treatments. The corporate materials that I mentioned getting are...just as you said...sales tools. They kind of piss me off because they provide no real information other than what drug uses what number of shots and where. However, they will make great DVD/CD cases once I clean all of the sales crap out of them. :wink:



re: Avonex

I asked Biogen (in 2001) over and over again for more information. They kept sending me glossy sales-prepared materials. I finally said "Just don't send me any more brochures with people on the front cover".
I was told to go back and ask my neurologist. Which I did.

The good part:
What I got from the MS nurse was the peer-reviewed paper that Biogen needed to submit to the FDA to get their new drug approved.
I called the MS nurse back to say "thank you, that's just what I wanted".

The bad part:
At the time I was working in R&D and delt with statistics every day/hour/waking moment and was agast at how ineffective this drug was.

But you wouldn't get that idea from reading their colorful pamphlets.
No sir-re-bob!
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Postby Loobie » Fri Jan 04, 2008 3:09 pm

Gotta love the propaganda. I love the picture of the people mountain biking and stuff and they say "diagnosed with MS since 2006". And I think, BFD! I was doing that kind of stuff for the first 5 years too! It's as if they want you to think the reason that person is functioning so well is due to the drug. No, it's probably because most people don't get knocked off their mountain bikes for the first few years. Oh well, I've never seen a Jenny Craig commercial that wasn't loaded with best case scenarios either, and this stuff supposedly does have SOME efficacy, it just didn't work so well for me and many others.
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Postby Lyon » Fri Jan 04, 2008 3:26 pm

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Postby gwa » Fri Jan 04, 2008 3:31 pm

Lyon,

We are starting to think alike! Help, help!

I just posted on dignan's placebo thread something very similar to yours regarding the placebo effect and the CRABS.

One thing about the CRAB's though, is that people don't get better like they do on a placebo.

gwa
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Postby Lyon » Fri Jan 04, 2008 3:49 pm

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Postby CureOrBust » Fri Jan 04, 2008 4:52 pm

Lyon wrote:The crabs supposedly have around a 30% efficacy which could mean anything from 100% of MS patients experience a 30% benefit to 30% of MS patients experience 100% benefit and the other 70% experience no benefit.
On all the maths with studies that I have bothered to check, it is neither of the extremes you mention, but the average of both; so some people get the 100% reduction while others get 0-5%, that then averages to say 30% all depending on the numbers. You will see how studies say the "group" average relapse rate (ie total group relapses / total number in the group) was X per year before the treatment, then Y per year on average after.

NB: I haven't really looked at it too hard, but from memory, this appears to be the norm.
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Postby Lyon » Fri Jan 04, 2008 11:14 pm

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Postby CureOrBust » Sat Jan 05, 2008 1:04 am

the information is made clearly available, often in the results of the specific study itself if you want to draw your own conclusions.
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Re: Making the medication decision

Postby NHE » Sat Jan 05, 2008 1:42 am

coomoob wrote:NHE...I work in medicine and have to the Micomedex here at work...which has all of the information that you mentioned as being in the "secret compartments." That information has been a god send to me...as I've just been diving into the internet and library here at work trying to learn as much as I can about MS....especially the treatments. The corporate materials that I mentioned getting are...just as you said...sales tools. They kind of piss me off because they provide no real information other than what drug uses what number of shots and where. However, they will make great DVD/CD cases once I clean all of the sales crap out of them. :wink:

That's great news! It sounds like you're already positioned to make an informed decision. I wish you the best with this difficult process. With regards to the sales crap that these companies push on people, I take my sister along with my niece and nephew to a local event held every year by the NMSS area chapter. It's held at one of the local zoos. Essentially, it's a free day at the zoo for the kids (old kids like myself as well as the younger ones). Anyways, at last year's event Biogen sponsored a talk and nearly everyone there had their free carry bag of promo materials. They're really quite useless (especially the adds with the woman sitting on top of the train, that one just goes a little too far). We did however receive some nice pens from the NMSS. While they do write well, I would really prefer to have them spend their money on more research as well as helping people rather than handing out free pens! If you really want to know about how much the pharmas are spending on marketing vs. research, then you might want to read a couple of the books I've recommended in the Reading Nook forum. One is The Truth About the Drug Companies, How They Deceive Us And What To Do About It by Marcia Angell and the other is Selling Sickness by Ray Moynihan and Alan Cassels.

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Re: Newbie questions....

Postby NHE » Sat Jan 05, 2008 2:00 am

itsjustme wrote:At the time I was working in R&D and delt with statistics every day/hour/waking moment and was agast at how ineffective this drug was.

Agreed. The data is not very impressive. Data plots for Avonex vs. data plots for Tysabri. They look awfully similar to me. Anyways, it would be great to see some data for people that showed similar efficacy as to what's typically published in mouse studies, i.e., the treatment group is nearly a flat line while the controls on placebo progress!

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Postby TwistedHelix » Sat Jan 05, 2008 7:26 am

I have always been quite surprised that in the States you appear to have commercials and marketing for prescription drugs which are aimed at the public, and all these glossy leaflets and information packs from the companies. That doesn't happen here, and I've always thought that was a good thing, but now I'm not so sure: over here the medical reps are hard at work selling their products to our doctors and using all the sales techniques, freebies etc. to persuade them. This means that if a doctor recommends a particular therapy, it carries all the gravitas of a professional judgement, but may in fact be the result for a slap-up banquet the night before.

With regards to placebo, it has always been my understanding that the placebo effect is well documented to show up in about 30% of people. Therefore any drugs trial has to treat 30% as the baseline and only percentages above that figure are deemed to show success. The phrase, "no greater than placebo", is the death sentence for a drug. Either I've got that wrong or the situation has changed, and if there really are drugs on the market with only a 30% effect that is not 30% on top of that 30% placebo effect, it's truly worrying.

Bob,
The explanation you gave in your last post is spot on, (now it's time for me to butter you up). It demonstrates what people think when they see the word, " average", as opposed to what they ought to think. Also what COB said. I think the problem lies more in public understanding of statistics than with deliberate misrepresentation. On the other hand, maybe the companies are aware of and rely on that very misunderstanding……

NHE,
Woman sitting on a train, eh? It's amazing what these drugs can do – apparently sanitary towels can make you skydive with a skateboard while taking a dog for a walk, listening to MP3s, and grinning like an idiot. I was going to have a career in advertising. It's all true, you know…
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Postby jimmylegs » Sat Jan 05, 2008 7:29 am

interesting. do you think the mice really believe the placebos are doing them some good? or is it a case of the placebo actually being helpful? (case in point, a study where the "placebo" pill actually contained... i believe it was quercetin? for colouring, but yea. something really, really, not a placebo)
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Postby coomoob » Sat Jan 05, 2008 7:55 am

TwistedHelix wrote:I have always been quite surprised that in the States you appear to have commercials and marketing for prescription drugs which are aimed at the public, and all these glossy leaflets and information packs from the companies. That doesn't happen here, and I've always thought that was a good thing, but now I'm not so sure: over here the medical reps are hard at work selling their products to our doctors and using all the sales techniques, freebies etc. to persuade them. This means that if a doctor recommends a particular therapy, it carries all the gravitas of a professional judgement, but may in fact be the result for a slap-up banquet the night before.


Working in healthcare....it makes me nauseated to see all of those drug ads. The only one who should be telling you about drug therapy is your healthcare professional...NOT THE TELEVISION. If the doctor is swayed by freebies, well then so be it. At least they care about patients (hopefully) and have the knowledge to make the right decision, using the right drug as per patient. The drug companies do have to make money (preferrably by not raping their users, like in the USA), but going directly to the user (by TV) is (in my opinion) dangerous, shady and an unjust service to people. As someone said above, why not spend that money on research to help people and futher your company's drug portfolio. They are to concerned about making one more cent than helping people. I'm all for capitalism and am proud to be an America. But some things (like people's healthcare and quality of life) should not be bought and sold. ......and unfortunately I say this as I'm about to start using some of their drugs....ugh.... :roll:

Sorry for getting to Michael Moore today. :P
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Postby Loobie » Sat Jan 05, 2008 8:53 am

Dom,

It's kind of a double edged sword; the commercialization of Rx drugs. On the one hand, you can gig your doctor about a medication that he may not be aware of (I've done that). But on the other hand, making a decision about which Rx to "try" shouldn't be made due to influence of glossy commercial information. How much scientific data is in these commercials besides all the side effects which are blurted out at the end of the commercial in speed talk at light speed? In an informed patients case, they may see the commercial and then go research the drug to see if they want to try it, but most decisions are probably just made becasuse you are now aware of the drug due to the commercial. As in all things, follow the money.
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Postby Lyon » Sat Jan 05, 2008 9:59 am

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