In my opinion, the CCFA is a parasitic organization thats takes funds from communities to pay for the bloated salaries at the top, while doing nothing for patients. Time and time again, the CCFA sits by neither committing to nor denying the effectiveness of any new treatments. If you've ever been to a CCFA meeting or support group, you'd know exactly what Im talking about. The CEO of CCFA made $551,719 last year not including bonuses. MM is much less harmful than prednisone or any of the UC drugs out there and is listed as a treatment for UC by the federal government. Yes the CCFA has again dropped the ball. Perhaps all the money raised through endless 5K walks and bake sales would be better utilized studying MM and other alternatives to steroids & that fat CEO salary could go a long way in getting us there.
I have some issues with the CCFA as well, but this is completely unfair criticism.
"The CCFA sites by neither committing to nor denying the effectiveness of any new treatments?" It's not their job to run clinical trials on new treatments. They merely report the results of trials run by others and inform patients which medications have been approved as treatments based on said trials.
As for the CEO's pay, I agree it is high, but it's not out of line with other large charities. What's more, the CCFA actually rates quite high for charities, in terms of how little money they spend on overhead, salaries, admin costs, etc. Most of their money is spent on patient education and on research.
As for your claim that MM is "much less harmful than prednisone or any of the UC drugs out there...", that is unsubstantiated because there simply isn't enough research on MM to know what its side effect profile is like. It's quite possible that MM is less harmful than long-term prednisone, but it's less likely that MM is less harmful than aminosalicylates.
Where do you find that the federal government lists MM as a treatment for UC? What federal agency lists it? And what evidence do they site? It's certainly not the FDA.
As for the CCFA using its money to study MM, not likely to happen considering that it would be illegal to do so. The federal government of the U.S. would not allow such a thing to happen.
It's a joke that the federal govt classifies marijuana as a schedule 1 drug and won't allow much research on it, but that's the situation we find ourselves in. It seems unfair to blame the CCFA. Blame congress instead.
Post Edited (beave) : 10/4/2016 2:55:24 AM (GMT-6)