ccfa.org = shill for American pharmaceutical research?

Good morning, all,

My gastroenterologist, when she diagnosed me, said nothing about diet/exercise/herbs/etc., but did refer me to the ccfa.org website.

I visited it, noted the site's rather losided attempt at discrediting the Specific Carbohydrate Diet, and then, rhizomatically, I glanced at CCFA's board of directors. Alot of corporate lawyers, investment brokers, and the like.

Which leads me to ask: is CCFA all about more and more medicine (read: more and more $$$ to corporate America), or is it a resource worth tapping into (or both)?

Cheers--

I cancelled my membership with CCFA because I do think they have sold out to big money pharma. I think they do have a handful of independent researchers who are doing good work, but they are mostly putting their money (our money if you give it to them through membership) into the same kind of band-aid, high side effect type stuff as big pharma (namely biologics), while ignoring other avenues that get to the actual cause (FT, antibiotics, bacterial overgrowth, diet, etc.).

I went to a local one of their workshops. I did not like the fact that there were a bunch of pharm reps outside. However, despite what the website may say, there were speakers that talked a great deal about diets like the specific carb diet. So I think it is a mixed bag too.

And thanks songlady for the link. I had to sign up but I got to it.

they are in bed together...it is very disheartening.  i am not going to rely on them to promote anything other than toxic drugs that line the pockets of big pharma.  i do not believe ccfa is looking for a cure - they have their own agenda.

CCFA was founded by a gastroenterologist/med school professor & some of his Crohn's patients in the 1960s. It is not a shill nor is it profit-making, just because some IBDers prefer alternative, non-medically endorsed treatments. The majority of IBDers rely on traditional medical treatment. You personally may not like or approve of CCFA, but thousands of IBD patients & their families DO rely on information & support from the organization. When I was diagnosed in 1980, there really were no reliable sources of info on IBD geared to patients. CCFA then published two works by IBD gastro Dr. Daniel Present that changed my situation for the better, and I still admire them for initiating science-based informational support. At that time there were only steroids & sulfasalazine therapies available to patients; mesalamine was nearly a decade away. Before the advent of steroids in the 1950s, UC had a one-third fatality rate. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

 

Does anyone remember when CCFA.org had a forum that had at least 1 GI doc answering questions?  That was great. 

They apparently pulled the plug on that because of "liability".  I think that's crap. 

um, i believe there was a QUESTION directed to ALL people on this forum. i understand that is your OPINION, but WE have a right to ours as well. it IS capitalism, however, people are NOT getting the best treatments due to GREED - pure and simple. it is similar to the situation with the government if i do say so myself!

i happen to combine mainstream meds w/the "alternative" meds simply because that is the best i can do....it is not good enough though. and i think uc treatment could be lots better if the process was not monopolized by big pharma blocking cures/better treatments!

CGK, what antibiotics are you referring to? The one treatment that likely is being held up by U.S. big pharma: MESALAMINE RETENTION FOAM, which has been available in the U.K., Europe, Australia, & NZ for ca. 5 yrs-- but still has not come to market in North America. (Probably because the suppository profit is being "protected".) / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

UCinMI said...
Good morning, all,

My gastroenterologist, when she diagnosed me, said nothing about diet/exercise/herbs/etc., but did refer me to the ccfa.org website.

I visited it, noted the site's rather losided attempt at discrediting the Specific Carbohydrate Diet, and then, rhizomatically, I glanced at CCFA's board of directors. Alot of corporate lawyers, investment brokers, and the like.

Which leads me to ask: is CCFA all about more and more medicine (read: more and more $$$ to corporate America), or is it a resource worth tapping into (or both)?

Cheers--

Yes. Most definitely!!!

Someone posted a link about some hospital in Chicago possibly offering FT as a treatment for U.C. as early as this fall.

My cynical side envisions a hoard of drug company reps swooping in and making it worth their while to abandon such plans... who knows. Am a paranoid about how money has corrupted scientific research in the field of medicine in this country? Maybe.

As far as I can tell, the CCFA takes a lot of money from big pharmaceutical companies, and obviously that money comes with strings attached, and that worries me.

Eva Lou said...
The reason the alternative trtmnts. aren't funded or advertised is because they are just that- alternative! I swear sometimes it seems like ppl. will latch on to that term, alternative, & it's automatically good. If & when they become mainstream, will you still use them!

Alternative treatments are funded for studies or advertised because in most cases no one stands to gain anything monetarily for treatments that are often based on natural supplements or dietary changes.

I use a combination of limited meds, alternative therapies and dietary modifications that have worked well for me and have allowed me to maintain long-term remission. I'll use whatever works - whether it be mainstream or not - so long as it's side effects are minimal.

I certainly did notice when I was first diagnosed all the pamphlets, slick full color monthly magazine and interactive website my doc steered me to were sponsored by Procter & Gamble - makers of Asacol. The overriding message was "stay on your medication no matter what" and very little to no info was given on dietary or lifestyle modifications or general digestive health and ways to improve it. When I remarked on this to my doc, she laughed and accused me of being a "conspiracy theorist."

I think some of the issue w/ccfa is not just the drug companies, but the doctors who make the research decisions -- they also tend to be skeptical of alternative treatments.

However, a lot of alternative treatments are really hard to test scientifically. To study a diet rigorously, you have to give people all their food and they have to not cheat. I would stop eating something that didn't agree with me or maybe even that I didn't like..... to study stress is incredibly difficult, hard to even define it.

On the other hand, fecal transplants would be easy to study -- some of the issue there is the yuck factor and liability issues. My gi doc would love to study it, and no way can he get it past the hospital IRB.

I was totally skeptical of ccfa, but then I participated in their "power of two" program in Boston, where I met some people who really helped me when I was facing particular drugs or surgery. I also have been able to help others.

I went to a few patient family forums, and I didn't like those so much, as it was a whole day of getting talked at by doctors.... and I did take some of the drug company bling, and felt kind of guilty about it afterward.....

So, I agree, definitely a problematic group, but they do a lot of good things (and I think the free camps for kids are an excellent thing....). The problems are the same as throughout medicine, money taints priorities..... I do wonder if an organized group of patients could push the group to be a bit more open to other things..... seems possible..... I've never been quite up for it myself, so far.....