Diego,

My, you are a breath of fresh air! I believe this is how many of us feel but as patients who think that we are a huge untapped resource and seen by doctors and scientists, and all related organizations as cases or statistics, we rarely speak our mind. Not only are we rarely ever asked for our input; to be fair MJFF is an exception, but we know how we are perceived. We are afraid to step out of bounds because we are not taken seriously in the first place.

I get that as PWP we have a fairly self-centered sense of time, but wouldn't anyone whose near every movement depends on medication not be demanding a better process? We should not disregard safety, but the efficacy requirement of the FDA is ludricrous in our case given the unique situation with placebo. I really do not understand how some people sleep at night. It should not take the average 7-14 years of testing to see a drug come to market.

That being said, I have to stick up for MJFF a bit here. I have mixed feelings. I feel confident they are doing what they can but it is within the confines of the FDA, academia, pharma, etc. Is still don't ghet why MJFF cannot just break protocol and go for it. We have lots of well known people with this disease; why couldn't they fund a new approach to research that challenges the status quo. This is not that we ignore safety regulations, but there must be a faster way.

As for Dr. Schneider, We do not know how involved he is with pharma,so no fair to call out.

I do agree with you in principle though. Diego. The gist is that there are other meds that are still derived from animals. I think maybe researchers get hung up over delivery because having a med device or any "part" takes that much longer to jump through the ridiculous hoops of the FDA. Their restrictions are our problem. It costs pharma huge money to see a drug through to market.