Upcoming IBD Events in Southern California

I'm going to sound like the mean guy here, but here goes:

I supported the CCFA, but stopped after I learned some nasty things about the organization. They turn their backs on everything that doesn't have to do with biologics, immunosuppresants or other pharmaceutical agents. They advocate surgery when crap hits the fan and pretend that there aren't any other legitimate options.

Unfortunately, there's a major conflict of interest when you find out who their sponsors are. They receive a lot of their funding from the manufacturers of the standard pharmaceuticals that most people take here - Abbott, Shire, Jansen, etc. Their goal and incentive is to push out drugs - that's it. All the funding that they receive goes not to finding the "cure", but rather to the aforementioned companies so that they can push out more drugs.

Many of their keynote speakers are representatives of those companies. Their papers and presentations are NOT peer reviewed.

This is the same reason I won't ever support any cancer organizations, unless the money goes into preventative care. Most of the money we give them goes not towards the victims that are suffering, but towards the pharmaceutical companies. Only 5% of that money is spent on research, with the rest being on advertising.

Watch Pink Ribbon Inc for more information on how cancer patients are being exploited for financial gain.

Wow i was thinking about the pasadena one, but after i read that, idk!

Stealth, I understand where you are coming from, but going to these events doesn't have to do with any type of support for them or any donations to them. If all they do is push new biologics or other meds and offer nothing more, then I simply won't go to another one. I just don't see any harm in going to one or two.

Nomas, that is what I plan on doing. It's not like I'm going there to buy something from them. I would just like to hear what they have to say, especially about advances in surgery and alternative therapies. Also, possibly meet some people dealing with the same thing I am, like you did.

Yeah, i might try to go, info is power!

Awesome, glad to hear some of you might make it out there. I'll be registering today.

ambling said...
Thanks MikeSoCal.

The CCFA does far more than "push drugs" or "surgery". Their research includes; gene studies, fecal transplant, nutrition, and some amazingly complex studies to understand the role of the gut microbiome in I.B.D.

It is quite appalling to see people run down anything that doesn't fit their particular approach towards treatment. Research is to be welcomed on all levels. And I agree with DMC2011 that " info is power!".

This is simply just not true. These guys were founded in 1967 and very little progress has been made in the IBD field. The only difference now is that surgery is more sophisticated and yields better outcomes - this means that 3 year baby who failed all these treatments can safely get his colon removed, but we don't even want to look at why he developed UC in the first place. Not one cent has gone into preventative care or the epidemiological study of autoimmune diseases. Why aren't they studying the populations that have very little prevalence of IBD? Why are they continuing to treat the symptoms as the cause, and still using a top-down approach to all treatments. It sets a dangerous precedent when organizations like these get funding from pharmaceutical companies.

Just take a look at the statistics - the prevalence of IBD is increasing worldwide. Regardless of whatever "research" they come out with, you know the treatments will still branch out to biologics, steroids, immunosuppresants, mesalamines or surgery. No one is going to suggest FT for IBD simply because they have no interest in doing any trials on it. The FDA decided to ban mutaflor, a probiotic that had the same efficacy rates as mesalamines, just because it had the name "ecoli" in it, so what makes you think they'll start approving poop pills for IBD? They know that there's little profit in actually curing patients. There's a lot of politics going on in the background that prevents true progress from being made.

You think they are going to explore the nutrition arena for IBD? We know that foods are inflammatory; we know that foods modify and change our gut bacteria. Their are thousands of studies implicating poor nutrition in the development and progression of disease. The least these guys could do is look at the SCD diet and get some funding for that area. Instead, you have independent research groups with limited funding trying to figure it out. Rush University trying their darndest to get SCD study done but it's on hold due to funding issues.

Just so you know - Abbott, one their supporters, makes a drink called ensure, which has the controversial ingredient "carageenan" in it. Carrageenan has been implicated in bowel disease, bowel cancer and other gastrointestinal issues. There's solid research out there showing that it's inflammatory, and researchers petitioned the FDA at one point to ban it. It's just funny how simple things like these are being overlooked.

This is, of course, just my take on it. No one is going to stop out from going to these events.

Post Edited (StealthGuardian) : 10/20/2013 5:48:45 PM (GMT-6)

I agree with you on that. We'll have to agree to disagree about the CCFA. They can be a beacon of light for IBD sufferers, but they aren't to me.