Rilutek issues
I have to agree about Rilutek being a money-making item, but from here it looks like much more of what passes for ALS care is the same. I am in Central Penn. and when I started taking Rilutek 2 1/2 years ago my local Capital Blue Cros covered it. Last year they dropped it from the formulary and I had to search all 70 or so of the Part D Medicare providers to find the ONE who still coveed it - and incidentlly didn't have a :donut hole"
Now this year they also dropped Rilutek, and the "donut hole" is back. So what to do ? NORD does not supply anything for ALS - just an application for Aventis' support program. Aventis wants COMPLETE details of your finances - everything - with photocopies. Even if I could physically make and send all those copies, I refuse to give them my complete financial profile. That is just unacceptably intrusive.
As for State agencies, limited help is available IF you are solidly into the poverty line - if you have any resources at all to try to keep from going under you don't quallify, The indirect advice I have gotten is to sell our house and belongings and move into a cherity apartment, Cash in my life insurance policy and any savings or investmenta (no matter how limited) and then help will be available - because we qualify?
Of course, when I die my wife is left totally destitute and penniless.
I will NOT do that - so when I can no longer qalk or eat, or bath or use a toilet - then what? My wife has to take on a 24-7 support job? When does she sleep, eat, shop or even sit down and relax?
There is something very wrong with this picture.
JistMe