Thursday, April 8, 2010

A gentle nudge, hint, suggestion for Novartis

What the heck. I've already posted twice this morning, why not make it a hat trick, right? That should settle the natives who have restlessly been awaiting some new smoke signals from my blog.

Anyhoo, I was hanging out on Facebook yesterday trying to wrap my 49 year old brain around the site that was obviously created for the under 30 crowd (and being unsuccessful at figuring anything out, I might add) when I got a message from a friend. She's also an MSer and in the Fingolimod, FTY720, a.k.a. Gilenia trial and she knows how concerned I am about my medicinal future and whether or not I will be begging for someone to help me pay for the stuff month by month after the party (clinical trials are FUN!) is over.

I asked if I could quote her and she said I could. Here's what she had to say:

"I just had my 18 month check up yesterday, and was told by one of the trial coordinators that the head of the study from our location was/is working on our behalf.

At a conference recently, the neuro was advocating to Novartis that they should do something to take care of us guinea pigs when the drug is approved to the FDA and released to the market. He didn't think it is right if we have put in the time, just to possibly be cut off of our wonder drug."

So, to Novartis, if you are listening, PLEASE PLEASE (picture me on my knees here) have mercy on those of us who have laid our bodies on your examining tables and offered ourselves up for your poking and prodding, needle sticking and eye exams and PFTs and MRIs and CTs and all the other abc tests...

We have come to you as a last resort, some of us. We have no health insurance and the only way we could get treatment for our disease and ease some of the suffering and slow the progression was to gamble with our very lives and let you use us as guinea pigs in order to advance treatment for all who suffer from MS. We have had to deal with the news that at least 2 fellow lab rats gave their very lives to this clinical trial. For a hypochondriac to continue and forge ahead despite this news was the hardest thing I have ever had to do.

Novartis, your company has a reputation for compassion, and I plead with you to show that compassion when this trial is over. Give those of us who cannot afford to buy this miracle drug (of which I am the #1 cheerleader) a chance to stay on the medicine and continue leading lives that are once again worth living.

I am terrified that you will snatch it away and I will be left to once again have my MS run rampant and destroy my body. Please, please don't take it away.

From all of us who have helped you make Gilenia a success, we're just asking for a little compassion. Not too much to ask, is it?

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