Patient Perspective: First-Ever Crohn's and Colitis Congress

vegas

January. A time for resolutions, a fresh start, and let’s face it, the bitter cold.

But this January, I got the chance to escape the cold and attend the first ever Crohn’s & Colitis Congress co-hosted by the Crohn’s & Colitis Foundation and the American Gastroenterological Association, and let me tell you...there’s some promising stuff for IBD patients on the horizon!

The Congress was jam packed with case studies, abstracts, panels, and research. There were a few highlights that caught my eye that I’m excited to share with all of you.

Cutting-Edge Therapies

IBD therapies have come a long way over the past ten years, but we still have a long way to go. There are many patients who do not respond to current treatments and another cohort that have exhausted all biologics on the market. 

So what’s in the pipeline? Well...a lot!

First of all, many of the folks I had the chance to chat with talked about the fierce competition to enroll patients in their clinical trials. Why? Because the IBD market is hot right now. There are currently almost 500 recruiting clinical trials for IBD, and 280,000 patients needed to participate.

Here are some of the therapies I learned about that got me pumped for the future:

  • JAK Inhibitors:

    There was quite a bit of talk around JAK inhibitors at the conference as up and coming treatments for IBD. JAK inhibitors function by inhibiting the activity of one or more of the Janus kinase family of enzymes. What’s exciting is that these therapies have a completely different mechanism of action than some of the current therapies on the market (i.e. Humira is an anti-TNF inhibitor and Stelara targets IL-12 and IL 23). For those who haven’t responded well or have built up antibodies, a new mechanism of action could be just what they need! And they have already shown efficacy for rheumatoid arthritis patients. There’s even one JAK inhibitor in the pipeline that’s an oral medication. That’s right, folks, no more needles! How awesome would that be?

    The drug, tofacitinib is currently recruiting for a UC clinical trial.

lillyvegas

There are currently almost 500 recruiting clinical trials for IBD, and 280,000 patients needed to participate.

Let's get personal

Across the board, a fan favorite at the Congress was definitely Dr. Edward Loftus’ keynote presentation that broke down which therapies should be the “go-to” based on a patient’s profile. Finally, we have enough data that we can start getting more personalized. Certainly a key factor in the way that we will effectively treat and control IBD.


These slides break it down in easy lingo that both patients and physicians can appreciate:

medposcrohnsmedposuc

A discussion about diet and IBD - finally!

I’ve been waiting for this moment. 

Historically, there has been some push back surrounding diet and IBD management. I personally believe it is an important factor in managing chronic illness and was excited to see a panel of physicians and nutritionists talking openly about it and in general agreement that diet can play a role in IBD management.

 Some of the diets discussed included the specific carbohydrate diet (SCD), mediterranean diet, and a whole foods diet (low sugar and additives). There seemed to be general agreement that we should hold diet to the same standards we hold medications and I couldn’t agree more.

Here’s my take: diet matters and basic research on the microbiome is beginning to support this. 

However, I don’t think it will ever be a “one size fits all approach”. Just like medicine is personalized, diet should be too. Paleo isn’t a panacea for every IBD patient but neither is the SCD or mediterranean diet. We’ve started to see innovators exploring this topic. MyMee is an example of a company working to help chronic illness patients make diet and lifestyle changes based on personalized, data-driven decisions.

Um..."insurance-driven" healthcare?

It was the first time I heard this term “insurance-driven healthcare” and needless to say, I wasn’t pleased. Insurers are playing doctor. And it must be stopped.

I was excited to see that many physicians are actively working to combat dangerous practices by insurance companies such as step therapy (Requires patients to try and fail on drugs before their insurance plans will cover the costs of doctor-prescribed medicines) and non-medical switching (When patients are switched from their current medication to a less expensive therapy for non-medical reasons not approved by a patient’s doctor)

An important takeaway from this presentation is what we can collectively do as a community to stop insurance companies in their tracks. Currently the “Restoring the Patients Voice Act” (HR 2077) is sitting in congress. Contact your representatives to ensure this gets passed and puts guard rails around insurance companies. It would require health plans to implement exceptions to medication step-therapy protocol and put a clear process into place for an individual to request an exception wherein they are required to give a response within 72 hours or 24 hours in urgent cases.

If you do fall victim to step therapy, a patient advocate sitting on the panel had some great tips. She recommends trying to go at the insurance company from "all angles" when struggling to get approval by getting your physician involved as well as advocacy groups and the pharma company who produces the drug you need.

Tip: The Crohn’s & Colitis Foundation has a handy tool to help you easily get in touch with your representatives and provides language around the importance of improving access to patient care and funding medical research.

Insurers are playing doctor. And it must be stopped.

Speaking of advocates...

There were lots of incredible advocates in attendance tweeting away, podcasting, and soaking up all the learnings to bring back to fellow patients. I had the distinct pleasure of sitting down with Brooke Abbott and Aaron Blocker to record Patients Have Power! podcasts. Brooke’s is live now and might I just say...she’s a rockstar mom owning her chronic illness journey and serving as an incredible example for chronic moms and dads.

Stay tuned for Aaron’s where we talk IBD, rare diseases, and careers connected to advocacy.  


The autoimmune connection

Y’all know how I feel on this topic. Autoimmune diseases are all connected. Let’s start acting that way. One of my favorite moments from the conference was when Dr. Dermot McGovern said: “Learning from other immune diseases is an important way forward.” While reviewing lupus research and tying it back to IBD. 

This is what it’s all about. Autoimmune disease patients, physicians, and advocacy groups need to work together!

Autoimmune diseases are all connected. Let’s start acting that way.

The Patient Voice Matters

The Crohn’s & Colitis Foundation will be releasing a 2018 Challenges in Research Manuscript...and hats off to them for opening up public comment to learn what the IBD community cares about when it comes to the top priorities in research.

Head over to their site to learn more and check back soon to read the manuscript and submit your feedback.

That’s All For Now!

Hats off to the Crohn’s & Colitis Foundation and the American Gastroenterological Association for putting together an incredible, cutting-edge conference. I look forward to next year!


Disclosure: 
The Crohn’s & Colitis Foundation paid for my travel and expenses to attend the conference.

lilly.jpg
Lilly Stairs is an autoimmune patient and the Head of Patient Advocacy at Clara.