The opportunities to change the future are palpable. But contrary to Mr. Munos's suggestion at the FDA meeting, patients are too stigmatized, impoverished and terribly ill to come up with the funding to solve these challenges on their own. They already pay with their lives and with $18-23B a year in lost productivity and direct medical costs. If there ever was a time for the NIH to step up to the plate, it is now. Use the approaches used in other disease areas to foster the needed investments and collaborations.
The disconnect between my sense of urgency for treatments and a cure to get my life back after 23 years with this disease and their totally lackadaisical manner and approach to everything discussed makes me totally feel like giving up. This meeting is a stark reminder that I am alone. I'm stuck with this illness for the rest of my life, just staring at my ceiling from my bed.