Some DDW thoughts

So last weekend was DDW 2015. I hope those of you who didn’t have twitter accounts were able to sign up and followed some of the physicians and IBD patient advocates who were there tweeting their thumbs off that whole weekend. It was the first time I had been to DDW for IBD purposes and I came home encouraged by what I saw. Here were some of the things I found intriguing (in no particular order):

  • Several new classes of biologics beyond the anti-TNFs for both Ulcerative Colitis and Crohn’s disease are looking promising in phase 2/3 clinical trials. A few of these are being commandeered from the RA community so safety profiles at least in those drugs look pretty good so far. I’m betting that IBD treatment options will increase rapidly as the CDAI is phased out  and interest in HCV therapies cools off which hopefully will shift researchers, pharma and $ to IBD.
  • For those who are on anti-TNF’s (Remicade, Humira or Cimzia)…take heart. A lot of focus is being placed into how to better manage these patients, monitor/predict response, treat side effects, induce remission etc. The rooms during talks about anti-TNFs were overflowing which is a good sign for patients.
    • As an aside or question for other people who were there or know: We seem to be looking mostly at trough drug levels to predict response but I wonder (or didn’t see) who is looking more immunologically at responders vs. non responders to anti-TNF drugs. The fact that we seem ‘stuck’ at ~50% response rate across several drugs suggests to me we haven’t quite nailed down the most fundamental predictors of response. Will there be an analogous IL-28B genotype predictor of anti-TNF response as there was in the now obsolete (slightly controversial statement) interferon based HCV therapies?
  • Quite a bit of work was presented discussing lymphoma risks for patients on combination therapy of immunomodulators (6MP, azathioprine, methotrexate) plus an anti-TNF. The risks seem highest among older patients. We need to continue to learn about the mechanisms underlying this problem.
  • Some of the most interesting natural history data (I thought) was surrounding racial disparities among various outcomes. Whether this is an access to care problem or truly biological differences is a very important question moving forward. Most of this data concerned African Americans (faster time to perianal disease, markedly higher rates of extraintestinal manifestations of Crohn’s, etc). There was notably sparse data examining IBD outcomes in Hispanic patients although I met and spoke with a GI doctor from South America who hopes to right the ship in this department.
  • Perhaps some of the most encouraging data were the safety profiles of biologics in pregnancy. This is good news for everyone. It seems mothers can continue biologics beyond week 30 without serious consequence to baby past 32 weeks , although they say live vaccines should be avoided in the first year of life.  THIS WILL CONTINUE TO BE STUDIED FURTHER SO THIS IS NOT LAW YET.
  • Far more serious work is going on in quality of life concerns among IBD patients than I expected. New patient reported outcomes are being developed and validated and areas where patients struggle are being defined. There was some excellent discussion about patient reported outcomes that I heard.
  • I didn’t see very much data for ostomy stuff unfortunately although I think there are several studies that can and should be done in this department. I guess it’s not as sexy but I may have missed this data there was so much there.

Actually my favorite part of DDW wasn’t the interesting studies or anything like that it was meeting Dr. Higgins and Dr. Adler (both from University of Michigan), Empowering patients (not sure if she wants me using her name), Dan Sharp, Sara Ringer, Bryan from Intense Intestines Foundation and all the other awesome people at the “GutOverHere” event for patients with IBD. I had never been or talked to that many people with Crohn’s or UC in my life and it was such a cool experience. Meeting people of all ages with IBD and their loved ones who have gone through it all with them was really a surreal experience. I’m having trouble putting words to it but if anyone is on the fence about going to one of these meet ups or an IBD support group I’d say go. You have nothing to lose and being with people who truly get it can be profoundly comforting. So that’s it for DDW updates. There was so much data I have some more things to comment on/continue to read about (i.e. FGID-GP) that I will likely be posting about. Enjoy Memorial Day everyone

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