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Old 01-01-2009, 10:43 PM
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Grand Magnate
 
Join Date: Aug 2006
Location: Vancouver, Canada
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15 yr Member
lady_express_44 lady_express_44 is offline
Grand Magnate
lady_express_44's Avatar
 
Join Date: Aug 2006
Location: Vancouver, Canada
Posts: 3,300
15 yr Member
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There are plenty of subjects that don’t interest me either. I normally just don’t follow those threads.

Nailing these numbers is not about “the debate” over who is right or wrong. Frankly, even I couldn’t care less about that. This discussion is about giving people the information they need to make fully informed decisions . . . no matter WHAT the number is.

When weighing up this drug, I'm betting almost everyone at least considered the 1:1000 odds (over a mean of 18 months) of getting PML. That might not be considered too big of a risk for some people (and/or their doctors), yet for others it definitely IS enough to deter them.

Those odds might increase to 1:500 or 1:20, and I would suggest that might make a difference to many people, even some that are currently on it. Personally, I would not choose Tysabri at 1:1000 (or slightly more), but if the odds dropped considerably, to say one in 6000, 35,000 or 50,000, that very well could matter to my (and likely some others’) decision.

There are people on the net that are suggesting that “there are only 4 cases of PML in 35-odd thousand people now (or "1:6000", so no need to worry)” and/or some of the PML cases “don’t count, because .... blah, blah, blah”. That is misleading, IMHO, and may give people a false sense of security.

Considering the interest in this information (by patients, shareholders, etc.), I would think Biogen would be updating us regularly with exactly how many people have taken this drug for longer than 18 months, and the number of confirmed (not to mention unconfirmed) cases of PML. But, I suppose as long as everyone “thinks” they know, and those assumptions look good for the company, they have no motivation or obligation to clarify any misunderstanding there may be.

I am interested in clarifying this once and for all, so we have a starting place to “build on” for future announcements on numbers . . . But for those who “don’t care”, please feel free not to follow the results of our discussions with Biogen.

Cherie
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Last edited by lady_express_44; 01-01-2009 at 10:59 PM.
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