Wednesday, October 04, 2006

Poll: Results

Thanks a lot for your voting!

I have to admit that I am surprised by the outcome. More than half of you would take Pagoclone even for only moderate impact. Of course, you might not be representative for the general stuttering population.

I was guessing that about 10% would take Pagoclone (or another medication), but it seems to be more.


Anonymous said...

Why are you surprised?
If you ask people if they'd rather be
(1) sick and poor or
(2) rich and healthy,
what would you guess about the outcome. Right! Most of the respondents would vote for option (2).
So if you ask people who stutter whether they rather stutter severly or not so severely what would they answer? Right again! They would vote for "not so severely." And if it takes a drug with little or no costs involved (money, unwanted side effects), they'd take it.
There are people who think that stutterers stutter because they like it. That's not true, most of them hate it.
Behavioral therapy is effective for many of those who really try certainly is a hard way to fluency ("The hard way to find the easy way out", Anders Lundberg). A potent drug may be a way to fluency that is not so hard.
I would take it, anyway. Perhaps not on a day to day basis, because I'm too fluent for that now, but to facilitate fluency in particularily challenging situations might be an option.

For the time being we'll have to wait and see what miracles the drug will be able to produce.

Tom Weidig said...

I am surprised, because in my calculation on how much revenue Pagoclone could generate I estimated 10% of people who stutter would take it. Then Norbert who runs the BSA on a daily basis, wrote a comment saying that he believed only 1% of the BSA membership would take it. So I was wondering whether I was not aware that so many people who stutter dont want a pill. But this poll, even if not very scientific, seems to clearly point in the opposite direction. The vast majority would at the very least try it out and see what the effects are.

You are saying that you would only use it for particularly challenging situations. But I asked Jerry Maguire and he clearly said that this is not possible. You need to take it on a continuous basis to see results and re-balance your neuro-transmitter levels.

Anonymous said...

Okay, if the drug doesn't work on a temporary basis, I may or may not use it, depending on what the overall benefit is for me.

The real question is about the balance of benefit and cost. If the drug is cheap and free of unwanted side effects there has to be a small benefit only in order to make people take it. If the drug is expensive and / or has severe unwanted side effects the benefit has to be substantial. As of now many PWS probably think that there will be no reasonable balance, too little benefit with too big cost. So Norbert may be right for the moment. But that's going to change if the drug can be shown to be real powerful. Have Günter Jauch present it in Stern TV and PWS will run head over heels to the next drugstore. They even run when they see a "cured stutterer" by DF. It doesn't matter if something works or not, the important thing is whether the crowds believe that it will work.

I predict that the drug will be very successful and that almost every PWS will at least try it. The good thing is that taking a drug is not a one-time trial. If it doesn't work as expected use will be discontinued.

In order to get a substantiated sales prediction for the drug you would have to consider many more variables than contained in your survey.

Andreas Starke

Tom Weidig said...

(NOTE for non-German readers, Guenter Jauch is a talk show like Oprah Winfrey.)

I read 1-2 articles on side effects in Pagoclone, and the authors considered them mild on an absolute scale (and not addictive), and certainly less side effects then similar medication. The question mark is on long-term effects.

Regarding benefits, I just met one person who was on Pagoclone, and he was still visibly struggling: see previous post. Based on this experience and hear-say, I tend to think that Pagoclone somehow reduces the impact emotions have on the fluency of people's speech and the secondary symptoms dysfluency creates.

My calcuation was a rough first-order approximation to the total market.

I think that everyone will at least try it out.

Here is my view on whether I would take it:

Tom Weidig said...


Ross Hoffman, M.D. said...

There will soon be another alternative. My startup company NeuroQuest has been testing an approach with now proven safety. We soon begin pilot data for efficacy in PDS. Pls look for our website in 2 months and we'll keep you posted.
Best wishes to you all.