So I telephoned Biogen to try to find out if the experimental compound BIIC33 ( <shortened url> ) is thought to have the potential to repair only white matter (myelin) as suggested by recent reports or grey matter also (the nerve cells themselves) as reported in older reports.
I couldn't email because I could find no email address on their site. I telephoned their press officer who immediately cut me off mid sentence and gave me the number of a Biogen patient advice line. A polite gentlemen listened to my enquiry from beginning to end but admitted that he had no idea whatsoever as to the answer. He gave me another number. I spoke to a lady who gave me another number but when I telephoned it I got through to the press office (again). So I telephoned the second lady (again) and explained my question (again) and she asked me to write this down in an email.
So I write an email the following day. Two days later I receive an email asking me if I am a journalist, doctor or patient. I next receive this reply,
Thank you for your patience. Neither Biogen Idec or anyone in our MS Service line team will be able to honor your inquirty. You must ask your treating physcian regarding questions such as this.
I get the feeling she didn't to read about BIIC33 at all, and I explain in my next email
How on earth could my Doctor answer this question?? Biogen Idec are conducting the research?!
Perhaps you could tell me who in your corporation I could contact?
To which I'm told,
Our MS service team is not able to answer to a therapeutic hypothesis of a non-approved MS drug. Thank you for your understanding.
And then I reply saying that it means a lot to me and ask if there's anyone else I can contact and offer to provide the names of the researchers.
I receive no reply. And that was eleven days ago.
They were completely unhelpful, I should imagine that the researchers would be delighted to spread news on what it is that they're doing and I can't see this being a trade secret since I was only asking, essentially if they could confirm the facts in older reports. What would stop them from sending an email to the researchers? I'm on Rituximab so I am a customer after all.
It would be very vindictive of me to wish CCSVI fulfils its promise and puts them out of profit and forces one or two staff cuts. So I won't. They'd be more than happy to talk about drugs which promote axonal repair in that eventuality, I'm sure.
Am I being unfair in thinking that they don't really care?