It makes me wonder how the people in grey suits can decide on who should be allowed to try out any new hope drugs that might have a chance of improving some ones lives and then on the other hand let drugs like statins flood the market with disasterous results, having more debilitating side effects and ruining peoples lives. Yet pwp who have sufferred for years and would jump at the chance of a bit of restbite that a particular drug might bring have to wait years for any new drug to be tested by which time more pwp have passed away. I know that the intention is to speed up the process but more needs to be done and it should be reviewed more frequently with a lot more urgency. Why can't pwp have a bigger say in testing of drugs/treatments. I am sure that many live such a miserable existence now that they would try anything if given the chance.
I'm with you ....i was told just after diagnosis that a cure would be found within 5/6 years .....that was 3 years ago .....and the drugs being developed at the moment are not likely to be available to us for around 15, 16, 17 years ......... why is everything so slow!!!
i was told the same thing 10 yr ago , it's standard waffle from the neuros. If they found a cure it would be tweeked so that it wasn't one, just be another pill to compliment the others