IBD: How a Bike Ride is Transforming the Crohn s and Colitis Community Webcast October 9, 2008 Tony Weiss, M.D. Jay Pacitti Please remember the opinions expressed on Patient Power are not necessarily the views of Get Your Guts in Gear, Inc., its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That s how you ll get care that s most appropriate for you. Introduction Hello and welcome to Patient Power. I m Andrew Schorr. A number of times along the way I have done programs on IBD, and I ve always been inspired when I ve had as a guest Jay Pacitti, and Jay is the ride director for Get Your Guts in Gear, and on his own has really taken this on, and then other people have piled on and said we want to help, we want to participate, and so now there is a ride coming up in Austin, Texas, that really illustrates what Get Your Guts in Gear is all about. So Jay is joining us in the final countdown for the Austin, Texas, ride. Jay, welcome. Tell us about how, this probably is an exciting time as everybody comes together to want to participate and help out. Yes it is Andrew, and thank you for having me here today. As you said, we re in the final week-and-a -half of preparation for our 3-day, 210-mile ride that s going to happen near central Texas starting in La Grange and winding all the way around to the west side of Austin, and it will be from October 17 th through the 19 th 2008. Now can people easily sign up, and what are the benefits when they do? What are the benefits of feeling supported and maybe doing something they never thought they could? Oh absolutely. The benefits are many. At this point it s a little bit late to sign up to ride unless somebody is already a cyclist who s ridden distance and is able to complete the fundraising, but we are still looking for volunteer crew members who come along for the entire experience to help support the riders. As you mentioned, whether somebody is part of that support crew or part of the group of people who are riding, the benefits are connecting with a group of people outside of your ordinary life where you come together to support one another in this what may seem to some people like a crazy or impossible challenge of riding 3 days and 210 miles. So the community that s created around the event really lasts throughout the year and helps support people whether there s somebody living with Crohn s or colitis or whether they re a parent or a spouse or other kind of caregiver of somebody with Crohn s or colitis. ihealth.nmh.org 2008 Northwestern Memorial Hospital
And you have rides in other regions. We do. We also have a ride from New York City to Saratoga Springs up the scenic Hudson River valley in New York and one just north of Seattle. I just want to read a couple of comments that I ve seen from people who have participated. This was from Gary who was a first time rider. He said, There must have been a dozen times I said I can t do this, but with the outstanding support of the crew and all the riders I did something I thought not possible. I went 208 miles on my bike. Here s another one from Vern who wrote, This was the single most inspirational event in which I have ever participated, and there are more and more comments. Jay, I want to bring in your doctor who joins us from New York City, and that is Dr. Tony Weiss who has devoted his life to helping people with IBD. So Dr. Weiss, here s Jay your patient doing this and maybe you ve had others who have participated for example in the New York City ride. It must inspire you as a healthcare provider. Oh absolutely, and I think it was with Jay six or seven years ago that you came to me saying you wanted to do a ride for Crohn s disease, Crohn s and colitis, and I was just so excited. I thought it was the best idea, and I was very enthusiastic. I rode with them, and we raised money, and it was terrific. It was inspiring. What we say these days is that Crohn s is a disease of a lifetime, which means unfortunately we can t cure it, but with the medications we have, and they re getting better and I ll talk about that later and there are more of them, our goal is to make sure that people have a normal life and a normal quality of life as much as possible, and this is just the perfect example to show that you can have a serious disease and still thrive. Just to see this ride Andrew is just so impressive. Probably half the riders who ride either have inflammatory bowel disease and the other half is either doing it for a friend who has IBD or a family member who has IBD, and it s not small feat for anyone to ride 210 miles over three days. So just showing that yes I have Crohn s, yes I ve got colitis, I ve had surgery, you know, I m missing part of my intestines but I can still do this is just really the right message to send. I come from Ashkenazic Jewish extraction, and so I know there s a little higher incidence there of some of these illnesses and so I know people, and I know years ago it was really where are the bathrooms, and can I go out, and really what kind 2
of quality of life I can have? Now I know a lot of progress has been made, so the idea that somebody goes on a ride is really illustrative I think of the progress we re making. Wouldn t you agree Jay? Definitely. So it s not only from better treatments available and people partnering with their doctors, but on these rides we strive to do everything we can to make it possible. So for example there are rest stops every 12-15 miles where there are snacks and Gatorade and water and bathroom facilities. In addition to that support, every 12-15 miles we have vans out on the route to look for people in between those stops to make sure that people feel completely supported as they re undertaking this event. Progress in IBD Treatment Dr. Weiss, let s talk for a minute about progress we ve made. It used to be that people would ultimately need surgery. I had relatives and friends like that. While that still may come into play, a lot of progress has been made with the medications, has it not? Absolutely. The two biggest advances we ve seen to my mind in the past decade has been number one, better targeted therapy where we re really targeting and understanding at the molecular level how Crohn s works and how ulcerative colitis works, and having therapies that can actually work at that cellular level rather than giving a drug that s kind of a blanket like steroids, which depresses the entire immune system and has as much bad as it does good. We now have drugs, and the three big ones are what we call the biologics, and they target a molecule called tumor necrosis factor, and these drugs can actually turn off the abnormal inflammatory process that s going on. What we see in these drugs is really something we haven t seen with any other treatment, and that given promptly and in the right situation can induce complete healing of the internal lining of the colon, the mucosa. So you can give these drugs and watch a lining of a colon or lining of the small bowel that s gone from ulcered and weeping and oozing red inflamed tissue to look just like a normal healthy colon or a normal healthy small bowel. Now you mentioned about a personalized approach, so I know Jay in your case you take many pills a day, and there are other people who take fewer, some who have infused therapy, some do not, but you get to meet a lot of patients Jay. Are you seeing really a more positive lifestyle for people and a lot of hope about the future? 3
It seems like it definitely, and again it s really so, as you mentioned, it s so individual to each person, and you do still see people needing to keep in touch with their doctors as they either try a new therapy or determine that maybe there s a different therapy that would work better for them, but I think there is a lot of hope out there as more treatments become available. Now let s talk about the support when someone goes on these rides. You talked about some of the logistical support, but what about the emotional support? The emotional support is huge. Just knowing that you re out on the road with all of these other people who are there with the single purpose of supporting you as you undertake what either, you know, there are certainly many people who are already experienced cyclists, but there are also lots and lots of people who are total novices who have never done anything like this before and didn t think they could do anything like this before, so the emotional support of knowing that this event exists solely for people with IBD to form this community is pretty powerful. We have a lot of people who come back year after year just because this is one of the things that not only is amazing to them for that weekend but throughout the year the connections that they make over that weekend support them months and months later. They know that they can get in touch with these folks that they met during the ride and made these connections as perhaps their disease flares up later on and that sort of thing. So it really is impressive. Jay, where does the money go? The money goes several different places; Get Your Guts in Gear Incorporated is a charity, so we support our own work, which is creating and producing these rides and creating this community and supporting it throughout the year, and then in addition we have a number of organizations that are beneficiaries, and those organizations include the Crohn s and Colitis Foundation of America through which we fund research. Also the United Ostomy Associations of America, an organization called The Colon Club, and another organization called the IBD Quilt Project. Those are the beneficiaries of the 2008 rides. Dr. Weiss, let me ask you. So money is raised to help people but particularly in the area of research, where are we headed with research for IBD? 4
One of the major projects we re looking at right now is an NIH funded project to actually look at and understand the genetic makeup of people with Crohn s and ulcerative colitis. We have now in the past several years actually isolated genes that are involved in turning on and turning off Crohn s disease, and there are actually, it s not so simple, not everyone has the same genetic abnormality, but there s been at least seven different genetic abnormalities identified in Crohn s disease. So what we re trying to do now is understand what type of genes affect what type of aspect of Crohn s disease, so we re gathering up two-and-a-half thousand patients and getting their genetic makeup on them in terms of getting blood tests, tissue samples, and then following them down the road so we can understand how these genes affect the disease. Building the IBD Community Jay, so here you have a group of people on a ride and you ve started this and you did it in New York and Seattle and you do it in Texas, so that s a group and they re all in it together. Do you think that s really symbolic of where we are as an IBD community now trying to move forward with better treatments and support the people who are dealing with these conditions now that we re all it in together and with the researchers and providers like Dr. Weiss as well? Definitely. IBD can be a really isolating disease. There s quite a culture of silence around it because frankly nobody wants to be made fun of or the butt of a joke because they have a disease that tends to keep them in the bathroom. It s really not something people like to talk about, so this feeling of all being in it together is really very important. It creates a safe space and it really empowers people to say hey, you know what, what I have is no more embarrassing than any other disease, and then to have doctors like Dr. Weiss, and there have been multiple other physicians and surgeons who have ridden with us and even folks from the pharmaceutical industry who have come out and ridden with us, to really come together as a community where the patients and the folks trying to help those patients are all together, it is quite amazing, and connections happen that make it more of a community, and I think it benefits everybody. There s one other thing that s always been very inspiring to me when I ve gone on these rides, I m sure you ll agree Jay, that we ll be on a ride and we re riding through towns in upstate New York and people will say well what s going on, and we tell them, and they re like oh yeah, my sister had that, my friend had that, and one guy, I remember we were at our campsite, came up and goes, This is amazing. I ve had colitis for 35 years. I had surgery. I didn t know you guys were out there. I m so just happy to see you out there and you can do this and we can do this sort 5
of thing. You realize there s a lot of people out there who have this disease, over a million people in the United States it s estimated and possibly more suffer from Crohn s disease and ulcerative colitis, and in addition to supporting others I think we re reaching out to them as well. The point I was going to make too is that you, Dr. Weiss, are going to be color commentator as we really take people right into the central Texas ride that s happening October 17 th to 19 th 2008, and along the way hear more of these inspiring stories that people who never thought they could do it who are the people who do it again and what it means for them, the people supporting them, and then with your help Dr. Weiss not only as a former rider but as a clinician help put this in perspective on where we are towards a ride towards better understanding or hopefully someday a cure for IBD. Are you ready to be a color commentator? I will do my best. Jay, any final comments from you as you re getting down to the wire with this ride, and of course you always have your planning for your others. Yes, my comments are a couple of things. Anybody who s in the Austin area who is interested in being a part of this upcoming ride, if you re a cyclist and know how to fundraise in a hurry, we d certainly welcome you, and you can go to our website at www.. You can check it out or give us a call. We certainly also welcome volunteers and crew members to come along and join us, and we re having a huge celebratory barbecue at the end of the ride just outside Austin, so you can come along and welcome everybody as they cross the finish line and then eat as much as you can. I like to say that I ride to eat and it s definitely true on this particular event. We ll see how far I get. I m actually riding in this one, so we ll see. Good luck to you Jay and thank you. I know everything we ve talked about with the Texas ride really is duplicated in its own way with these other rides, and I think the spirit that we re trying to carry forward on the internet on really working and building a community in IBD, and Jay congratulations to you in all you do because I know you ve been inspiring, and Dr. Weiss, this has to be a very inspiring patient for you. Absolutely. What he s done is very important. 6
Thank you, but I mean, Andrew it definitely doesn t happen without the many people who have believed in this. The folks that you quoted earlier, those are some of the things they wrote to me after the ride. Without all the people who have believed in it over the years including Dr. Weiss and everybody else who s ever ridden or crewed, this certainly wouldn t be possible, so the community definitely just keeps building itself. That s so great though when you get an idea and then everybody says great idea, I want to be a part of it, and then they make it their own too, and that s what s happened here. We ll be back soon with our program that documents the central Texas ride and really is a great example as hopefully we re showcasing today of what the spirit can be in the IBD community. So Jay Pacitti, thank you so much for joining us from Austin and Dr. Tony Weiss, thank you for joining us from New York City. You re welcome. Thank you Andrew. I m Andrew Schorr and as we like to say on Patient Power, remember, knowledge can be the best medicine of all. Thanks for joining us. Please remember the opinions expressed on Patient Power are not necessarily the views of Get Your Guts in Gear, Inc., its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That s how you ll get care that s most appropriate for you. 7