This Is MS Multiple Sclerosis Knowledge & Support Community

A couple of weeks ago I posted part of an e-mail I had received from Dr John Richert, Vice Presdient of Research at the NMSS.

Attached is his testimony to the FDA about Tysabri.

Apologies if it has already been posted.

Ian

http://www.nationalmssociety.org/tysabr ... timony.asp

"In this survey, questions about acceptable degrees of risk were phrased in a manner such as: Would you wish to take this drug if the risk of dying from PML within 3 years is one in a thousand, or 1%, or 10 %, and so on, right up to a 100% risk of dying from PML. The responses were spread relatively evenly throughout the range, without a cut-off at any particular degree of risk."

Does this imply that some bonehead responded to the survey by saying he/she would take tysabri if the risk of dying from PML was 100%?


"It is likely that our frame of reference for MS drugs will need to change to be more in line with the toxicity risks that are recognized in the treatment of other autoimmune diseases."

Translation - we kill people with other drugs, what's all the fuss?

Translation - we kill people with other drugs, what's all the fuss?

This has been my gripe all along. Many other drugs kill people. And yes there is a risk with Tysabri. But what does not have a risk out there. If you don't want to take the risk and you aren't going to take Tysabri, get out of the way of all the people who want to take it.
No risk taken; Nothing gained.

Determining the relative risks and benefits for Tysabri is a complicated matter. There are data that are being considered by the Advisory Panel that have not generally been in the public domain.

Yeah, well, don't overlook THAT above statement, either! How much does the public really know in order to be able to make a truly informed decision on whether to take a certain drug or not? How can you make an informed decision if you really don't know exactly what the real risk even IS?

At least the NMSS NOW is taking my advice and staying NEUTRAL! It's about time!

Ok...UPDATE!

Anyone seen this yet? Apologies if it has already been posted, but note the criteria that will come along with prescribing Tysabri.

amelia........Note in this, also, where it says it will be prescribed ONLY to RRMS patients.

http://www.nationalmssociety.org/tysabri_march8.asp