Saturday, September 15, 2007

Welcome members

If you are reading this and you have come from it's no doubt due to all the back and forth posts made today that stemmed from an original post on your website that linked to my blog. I found the link by tracing the number of hits to my blog back to the post on your site.

I went there today and signed up so that I could provide information about Fingolimod as one poster had asked about it. I didn't realize I was wrapping a hornets nest around my head. I was called a liar by one of the first people to respond and called out on the carpet by someone about my casual remark about the recent "study" of only 21 people that showed cessation of Tysabri may have something to do with an increase in the number of subsequent relapses in patients with RRMS. I agree, I should have left that info out all together as it had nothing to do with the info I came there to provide and I don't take it, or know anyone who does. Sorry for that! Sincerely.

That said, I didn't appreciate being called a liar. Someone on that board insisted that all Phase III studies of Fingolimod are 24 month studies. They are wrong and I should know that better than anyone merely investing -- I'm the one who's got the schedule of testing and the protocol for the next 12 months. I know at the end of the 12 months, if they are going to continue the study, I will have the option of staying in, but it's for 12 months. NO LIE.

I'm not an investor, I'm not a pharmaceutical company, nor am I a neurologist. I'm not pretending to be. What I AM is a person who has had relapsing/remitting Multiple Sclerosis for nearly nine years and I am currently in a clinical trial for a new medication. I know better than anyone else what it's doing for me. On that I am an expert. I was just trying to share. I didn't know it would explode the way that it did... I should never have posted.

If you're here because you are interested in the topic, please stick around and read the whole blog. There's lots of interesting tid bits in here.

If your here because you came to see if you could leave a comment and bash me, well, you're going to be disappointed. I changed my settings earlier and you can't do it any more. It seems some really childish people have way too much money in this world if they are investors who waste their time bashing some poor girl on her measly blog.

Now, back to my regularly scheduled witty self. For my regular readers, I promise I won't stray into that arena again. :-)

Pinch me, I'm dreaming

On my Google homepage I have customized it to display current MS news feeds so I can stay on top of what's happening around the world that might have an impact on my health. Today one of the links was to this article:

Novartis completes agreement with Bayer Schering related to Betaseron rights and manufacturing

The way I'm reading it is that Novartis, the old sly dog, bought the parent company of the people who were making Betaseron back when it was the MS drug du jour. That way they made the profit.

Well, now Novartis is dumping Betaseron on Bayer for a cool $200,000,000. They will no longer reap the profits from the sales of this drug. "Why would a company as big as Novartis make a move such as this?" you might ask. It's simple! They are expecting Fingolimod to be the new Gold Egg laying Goose! Why bother with the manufacturing of an injectable when it's going to be obsolete in another year or two and it's so much cheaper to manufacture pills?!

That single move by the pharmaceutical giant Novartis has left me more confident about the outlook for Fingolimod than and results of earlier trials have. Not to say I wasn't impressed before this, but why else could they be dumping Betaseron? It was one of the first MS drugs used in an attempt at disease modification. Many people with MS are still on this drug. It can only make money for whoever owns the patent and manufacturing rights. UNLESS it's become a dinosaur. Why dump one disease modifier that's already FDA approved unless you are sure about the new drugs coming out?

Maybe I'm reading too much into this, but if I am, I'm happily wandering in my own dream world, so please.... Shhhhhhh! Don't wake me up!

Tuesday, September 11, 2007

National Multiple Sclerosis Society's commercial for raising awareness

Thanks to Annie, who commented on my last entry, here's a commercial I thought I would share with you:

Monday, September 10, 2007

Hey Novartis! Some name suggestions for you!

I just can't see an MS commercial on TV with beautiful people engaging in idyllic scenes of active living with the words "Fingolimod : Take your life back!" on the screen.

You guys at Novartis are great when it comes to making the medicine do what it does -- I'm not questioning you there! It's just that, let's face it, you don't have the best marketing sense, in my opinion. I mean, look at your pharmaceutical company's name. Novartis?? That sounds like the inflammation of some little known internal organ, sorry.

So, I've decided that I will lend you my many years of marketing expertise that comes from owning a printing and sign business and helping my customers think up catchy tag lines. Don't worry, I won't charge you (unless you actually use it and then this blog entry becomes Exhibit A in the lawsuit). Anyhoo...I've got a few names you could try.

Remember, you're competing with trendy names like "Tysabri" whose nickname has become "Ty" and everyone loves to say it. It's got to be something trendy, refreshing, and gives a hopeful feeling to those taking it without in any way implying a shred of hope. hmmmmm

MS-be-gone is out. Too much of an absolute statement however much we with MS would like to buy into it. I see lawsuits over that one.

Brighter Tomorrow has potential although it's currently being used as a name for an MS grant program I think. But what if we shortened it? Brittom? or Britrow? No... it loses it's positive impact and sounds like something you might find when cleaning a fish.

I know, how about we go back to the Chinese roots of the fungus? Maybe there's a name there to be had. Then again, considering the Chinese angle (in the minds of Americans, Chinese = recall) and the fungus angle (what's catchy about a fungus... unless it's the fungus you are catching?)

How about "Nerve-On, applied directly to the spine!" No, those commercials are so annoying.

I'm going back to what sounds good. Something that smacks of "vitality". Vitameatavegamin is out, I guess.

Seriously, tho... I like these:

Gold Finger (because that's what Fingolimod sounds like to me and it reminds me of James Bond).

Vitalease (combining "vitality" with "ease" as in "ease of movement".)

Proreverse (as in "I'm all for a reversal of my MS damage!")

Jerimod (just to throw my name in there for posterity.)

Anyhow, all I'm trying to do is show you big guys at Novartis that if you are thinking ahead in a positive fashion to the days after FTY720/fingolimod is approved, then you have to get on top of this now. Give us a name we'll be able to pronounce and be proud to say when someone asks us what disease modifying drug we are taking for our Multiple Sclerosis. Please don't keep the Fingolimod label, alright?