All right, so this is my garbage bin. I come home to it every day. Let's see what's inside! (Okay, we can't, because the evidence is in shreds, obviously the result of some mad berserker just passing through eel infested waters...)
Suffice to say, it was a letter from the CCFA. A membership reminder, you ask? I thought so at first, until I noticed hmm, zero percent financing for all of 2008? Wait a second. I see. In addition to Shire, Salix and Bristol Myers Squibb, CCFA is also in bed with Bank of America! So nice of them to sell my address! Of course, since it's in the interest of getting a hot little BoA credit card with the CCFA logo on it, I guess it's okay.
Oh no, I see, through some halfhearted googling, the Bank of America is CCFA's bank! That explains ... something?
I give up. Too much homework (a state which will change next Thursday midnight) has obviously addled my brain.
Neat fact of the day: you can warm dying rechargeable AA batteries in your hands and they will then work in your camera. Wow! I guess it's better then if they exploded. Or is it? Eh. Useless post. Back to homework.
To an extent CCFA is a good organization. Their local seminars help patients and their families understand the disease, and that alone makes the organization worth while. However, that is a really puny fraction of the CCFA.
ReplyDeleteThe CCFA has an incredibly large staff. They operate on a district-office model, where there are three or four staffers for every major city. Even so, that's a small part of the CCFA's operating budget.
They mostly fund research. THe co-fund research with pharmaceutical companies on new drugs. They promote their fund-raising activities by "looking for a cure for ulcerative colitis and Crohn's Disease." Using the word "cure"in terms of ulcerative colitis is disingenuous at best because there already is a cure--a permanent ileostomy--for ulcerative colitis. There isn't a cure for Crohn's, so pitching the search of a cure there makes more sense.
From time to time, they do interesting research. They funded a study on IBD's impact on quality of life, and relatives perception of the negative impact that was pretty interesting. That study had minimal use to the drug companies.
Still, the CCFA, like most mainstream patient support organizations, focuses on perpetuating itself. I link to it on my blog, was a member when my doctor's office paid for my membership, attend their local seminars from time to time, but do not give them any money. I/my insurance paid Remicade $32,000. They can share a little of the profit they made off of that with CCFA if they want to ...
LOL--Enter this contest sponsored by the drug companies, and they'll give you a free one year membership to the CCFA--just for writing 200 words.
ReplyDeletehttp://www.myucguide.com/uc-success/
Celebrating UC success? I'm not sure I agree, unless they're talking about the success the drug/insurance companies/bandits are having at my expense!
ReplyDeleteJust kidding. Apart from being able to go to work everyday without wearing a diaper, I'm not sure what success entails. This calls for serious soul searching! But I think I'll do it - there's a free book! Woohoo!