This Sunday I attended the CCFA 2012 Boston Patient & Family IBD Symposium at Babson College. It was a full house for a very professionally run education program about IBD. Although I was not able to go to every session, I did get a pretty good flavor. And while I did learn a few things, I couldn’t help but be struck by the huge missed opportunity. Here is a summary of what I heard:
- There is some real awareness that most autoimmune diseases are somehow connected by genetic and environmental factors.
- There is a recognition that microbiota/bacterial imbalance plays a significant role.
- Smoking makes Crohn’s worse.
- Those on Anti-TNF therapy have a 2.18 x increased risk of Non-Melanoma Skin Cancer, 6mp a 4.27 x and combined a 6.75 x increased risk.
- Vitamin D deficiency is recognized as an important issue – but there was little discussion of how, why or what to do about it. But don’t go out in the sun if you are on immune suppression therapy!
- Prednisone/Steroid therapy works to stop flares, but is to be avoided due to side effects.
- 5-ASAs/Mesalamine has little or no benefit for Crohn’s disease.
- Omega 3 fats can play a role in therapy.
- NSAIDs make IBD worse (but no understanding of why)
- One bright spot was the presentation by Dr. Matt Hand Director of Pediatric Integrative Medicine at NH’s Hospital for Children in Manchester. Dr. Hand gave a nice overview of Alternative therapies and he discussed the promising research in key anti inflammatory supplements like fish oil, boswellia and curcumin. And while he was certainly open to new ideas (quite refreshing), I don’t think he grasped the fundamental concepts that we’ve been discussing (particulary Fasanos work). A missed opportunity I hope to follow up with him on.
Unfortunately there was absolutely no mention or recognition of the role of intestinal barrier function and increased intestinal permeability in IBD. And there was a clear message sent that diet had nothing to do with the problem, or solution. Of course, there was no mention of LDN.
The basic approach was to tell folks to make sure they stayed on their medications. And there was alot of discussion about moving quickly to biologic drugs. There was quite a bit of discussion about risk/reward for these drugs, but the choices defined were “false-choices”. They positioned the choice as between going untreated and having a poor quality of life, risking emergency surgery and eventual disability due to the disease progressing, against the slightly elevated chances for getting some type of cancer years down the road. The increased cost of the drugs was meantioned.
On the whole I was very dissappointed and frustrated. I just don’t get why all the research that is being published now that explains what is really going on is being ignored. And what is worse, people going to these sessions are getting bad information. But it was important for me to go. There is no way I can make a difference in their educational programming if I don’t know what they are covering.
There is alot of work needed to be done.