Trial Info

We had a two-hour appointment with my doctor yesterday and learned a lot about drug trials in general and more specifically about the two trials I have to choose from.

In general most trials, including the two I have to choose from, contain a control group and a placebo group and are double blinded. The control group receives the meds but the placebo group receives fake drugs. Double blinded means neither us nor my doctor know if I am part of the control group or placebo group. I hinted at a bribe to secure a spot in the control group, but no luck =)

Each trial has criteria the patient has to meet to be eligible to participate and there is a screening process to ensure that the criteria is met and to benchmark current abilities. For example, to participate in the cocktail trial I have to be on Rilutek for one month, I can't have a feeding tube and have to have a FVC of 70% or greater (FVC measures how hard I can blow . . . since my co-workers read this blog I will omit the obvious jokes! =) I was worried about hitting the 70% because I know through laughing and coughing that I have lost some strength and at clinic in Sept. I was at 79%. It took four tries (first one came in at 61%) for me to hit the 70% to qualify and I thought my eyes would pop out of my head from blowing so hard, but I'm in.

The good news was we don't have to pay for any of the drugs except for the Rilutek since it's the FDA approved drug for ALS and available through prescription. The bad news is the Rilutek is $100 a month, but thank goodness for insurance bcz otherwise it would be a $1000 a month and we wouldn't be able to afford it. (We have averaged approx $380 a month in medical bills this year so $100 doesn't seem like much on it's own but all of it is starting to add up.)

I'll try to post more about the actual drugs in the next couple of days, but my hands need a break for now.