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Originally Posted by ewizabeth
The thing is that most patients are not monitored closely enough, according to my neuro. He comes in and speaks with me every month. They're very careful at his office. Many patients don't see a doctor each month and that troubles him. It troubles me too because they need to watch for signs of PML looming. It shouldn't just be a cash grab for the doctors and centers infusing it.
I had my 21st infusion today and he gave me the news of the most recent death.
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It is clearly still a better risk than they predicted, at least so far, so I don't see why this news would scare people into a different decision.
And I agree that people are probably being watched like hawks, especially as the number of cases increases. The ratio of 1:1000 was predicted for over 18 months of use, and we are getting to the point where there are a fair number who are reaching that timeline now . . . so no doubt the doctors will be more vigilant and/or hyper-sensitive to any news that comes out over the next 6 -12 months.
Originally it was thought that this Florida woman was sent home and doing ok, but then she dies!
To date no one has died post-marketing, so I think they hoped that that wasn't going to happen if it was caught quickly enough under TOUCH safety protocol.
There are only 9500 who've been on it long enough (and a large % of those were in the trials), and who've come down with PML . . . so I don't think they claim to have any clear patterns emerging. At this point it seems to be luck of the draw whether we will get PML, and/or whether we will live through it.
But, like I said, everyone on it already accepts that risk.
Cherie
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