Medical Marijuana for UC & the CCFA

www.thedailybeast.com/articles/2016/10/02/can-smoking-pot-treat-incurable-disease.html

“CCFA does not endorse the use of marijuana in any form by IBD patients, any current state-based medical marijuana programs, or the legalization of marijuana.”

It would seem that the CCFA is again behind the curve.

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 find the ccfa to have a lot of good resources and I believe they do some good.

Ceos of conservation non-profits earn that much or more (Sierra club, and others). Sick, yes but it's universal everywhere regardless of organization.

beatUC said...
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)

In NY State, UC is listed as one of the conditions OKed for treatment with MM. These lists of conditions come from the federal government. Anyone who argues that MM is not as safe as prednisone is just plain wrong.

MM is a Schedule 1 drug in the U.S. so it may not be fair to ask for long term studies proving its safety. But Israel is the world leader in science on the medical uses of marijuana and they are conducting research proving MM efficacy in UC and Crohn's as well as a host of other diseases included epilepsy and ALS, etc.

So far very few or no side effects found. You cannot say that about Pred.

blog.sfgate.com/smellthetruth/2016/03/12/worth-repeating-medical-marijuana-defeats-crohns-disease/
A small human trial in Israel in 2011 found that “Of the 30 patients 21 improved significantly after treatment with cannabis.

Authors concluded that “this is the first report of cannabis use in CROHN’s disease in humans.

In 2013, researchers reported “complete remission” of Crohn’s Disease Activity in 5 of 11 cannabis test subjects in a prospective 21-person placebo-controlled study. Eight weeks of THC-rich cannabis “produced significant clinical, steroid-free benefits to 10 of 11 patients with active Crohn’s disease, compared with placebo, without side effects.

Yeah, alleged studies from "smell the truth" , sponsored by sublingual CBD spray.....written by a journalist who authored an mm guide book - perhaps there are better sources of information.

An almost magical cure all.... the stuff of newspaper headlines I am afraid.

So if the choice is between getting relief with a drug with certain known side effects, prednisone, and a drug with so far no side effects at least in the short term, MM, then I think I will choose MM.

MJ helps me! I was using it a few months before going on Humira, it definitely brought some relief while I was waiting to get on Humira.

Some people react different to it, that doesn't mean it doesn't help others though.....it gives me instant pain relief and a few hours break from the toilet (for my IBS as well)

The medical doesn't work any better than "street" stuff, it's just 3 or 4 times the price for the medical where I live.

Can anyone explain what the CCFA actually does? Is it just patient education, or do the fund medical research? I like their recent project, CCFA partners, where they send out questionnaires every few months and gather patient reported outcomes of various lifestyle choices, medical treatments, etc. I'd suggest everyone participate.

They are planning to put all the crohn's and colitis foundations under one, rather than from country to country....this way they can more easily get and keep information all from one global source for IBD I think it's a good thing, then the researchers from around the world of IBD will all be sharing what they discover about IBD and it's support for patients globally as well, basically so the IBD world is on the same page about discoveries with IBD.

^I see you missed my point entirely. Congrats?

So, now, tell me, what dose of MM is necessary for it to be "medical," and at that dose, what are the potential side effects? Percentages, if you have them.