Overview of Digestive Disease Week ’14

Hi everyone! I wanted to talk in depth about all that happened during digestive disease week but figured it would be better to break it up into a few parts. 20140506-122329.jpg Basically, Janssen Biotech which is the pharmaceutical part of Johnson and Johnson (the makers of Remicade) reached out to a number of health advocates and doctors who they felt had influence in the community. They wanted to have an open dialogue about how patients with Crohns or ulcerative colitis felt about certain things, how best to improve some of the things that were lacking, and things of that nature.

When I participated on a patient panel a number of months ago for this company, it was an amazingly eye opening experience. I don’t think I wrote a post on it but really quickly- it was me, a HIV health activist and a lung cancer activist. We were in front of about 30 people and had Bob Brooks from WEGO Health facilitate a discussion among the three of us. Following that, the people from Janssen or whoever else was in the audience asked us specific questions.


After being part of that and seeing how there are more to pharmaceutical companies than we think, I was even more thrilled to be part of the event that took place last weekend.

We arrived Saturday afternoon in Chicago and after getting changed and hanging out for a little bit, we all went down to where the meeting was being held. We met all the people who were working for Janssen on this project, the gastrointerologists who were in attendance, and of course it gave all of us a chance to introduce ourselves as well. We all then sat and had dinner while we discussed issues related to misconceptions about IBD, how social media plays a role in the lives of Crohns and ulcerative colitis patients, what were some of the most important parts of advocacy to us, the feelings of the community about pharma, etc.

It was so nice to feel like we were all on the same side. I know deep down that all anyone wants (whether it be patients, caregivers, doctors, or pharmacutical companies) is for people to be well. People who work for a pharma company get sick too. They have family and friends who fall ill and rely on medications. We are all human beings. It is hard to realize that when it seems like we are kind of fighting against each other. I know I have my issues with doctors because of how many times I have been mistreated by them. I know many people feel pharmacutical companies would rather keep pumping us all with terrible medications rather than put the money towards finding a cure. And I am sure doctors are caught somewhere in the middle, dealing with insurance companies and all of the laws they must follow in order to practice medicine.

After the meeting ended around 10:30 central, some of us got changed and then met in the lobby to play Cards Against Humanity. It was a lot of laughter and just a generally good time.20140506-122827.jpg

Sunday was the expo so after meeting for breakfast and each of us doing a quick video, we ventured into the biggest GI convention in the world. It was very cool to see some of the things that were there and meet people who I only know through the blogosphere or twitterland.


More tomorrow :)