The High Price of Living With IBD

New England E-Newsletter July 2019 Edition

In this Issue

Executive Director Thoughts | Volunteer Highlight IBD Journey | IBD Community| Team Challenge | spin4  | Team Challenge | Save the Date

The High Price of Living with IBD

Executive Director Kimberly F. Snapper

As if living with the debilitating symptoms of Inflammatory Bowel Disease (IBD) isn’t hard enough for people, add to that the financial burden that the disease has on one’s life. The Crohn’s & Colitis Foundation recently published the results from our cost of care study. The study analyzed claims-data generated by more than 50,000 IBD patients over a 10-year period. The goals of the study was to describe the annual direct and indirect costs of care for IBD patients, describe the drivers of cost after diagnosis, and characterize the costs for newly diagnosed patients.

The study found that:

•       IBD patients incurred annual cost three times higher than non-IBD patients

•       IBD patients absorb more than twice the annual out-of-pocket costs than non-IBD patients

•       Annual costs of IBD were substantially higher in the year of the initial diagnosis

•       The biggest drivers of costs are therapeutics (biologics, opioids, and steroids), comorbidities (anemia and psychiatric illness), and emergency room visits

•       Children with IBD and IBD patients older than 65 have up to 46% higher cost burden than IBD patients age 35-44

•       IBD patients are estimated to have three times more work-related lost wages than non-IBD patients

“To truly understand the financial impact of IBD, we commissioned a study to look at the drivers of cost of care for Crohn’s disease and ulcerative colitis,” said Michael Osso, President & CEO of the Crohn’s & Colitis Foundation. “The results of this study confirm what we suspected – having IBD places an enormous financial burden on patients and their families. We must work together as a community to tackle the costs to ensure that patients have access to the treatments they need, when they need it.” 

The Crohn’s & Colitis Foundation will be using findings from the Cost of IBD Initiative to develop additional tools, educational programs, and policy recommendations to address key cost drivers for IBD.

Thank you, 

Kim's Signature




Kimberly Snapper  

Crohn’s & Colitis Foundation Regional Executive Director

Meet Volunteer Victor McCormack!

Victor McCormack

We are thrilled to introduce you to one of the Foundation’s newest volunteer leaders, Victor McCormack! Victor came to us through our Young Professionals’ Committee, and boy did he come in with a bang! Victor is a force to be reckoned with, determined to make a difference in the lives of others living with Crohn’s disease and ulcerative colitis. In less than a week Victor’s donation page for the young professionals’ annual summer event, A Night in White for a Cure, surpassed $1,500, support flooding in from all directions.

When asked about the power of connecting to others and with the Foundation, Victor told us this story, “When I initially got sick, I knew nothing of this illness and I truly felt alone as no one understood what I was going through. Come to find out, one of my longtime friends, Jordyn Burger, also has IBD. We shared war stories of diagnosis and biologics we were taking. My symptoms progressed and got worse and then I found out I needed to get an ostomy.Again, I felt alone and terrified with no idea how an ostomy works and I started to get body image issues, I even had the thought that my body was broken. Jordyn was kind enough to introduce me to Kenzie Mackin who listened to my fears and helped calm me down. Again, I had someone with similar stories and her positivity helped me through recovery. Once I was almost recovered from surgery, Jordyn introduced me to the Young Professionals’ Committee. I met people like Shaun Campos, the president of the Young Professionals’ Committee, who also had an ostomy and shared tips on working out and inspirational goals, like running marathons with an ostomy. I truly met a group of people that understood what I was going through and I did not feel so alone anymore.”

This road is not meant to be traveled alone. When we stand together in this fight for better treatments and cures, that is when a real difference can be made. We want to thank Victor for his bravery in speaking out. You are amazing, Victor!

Preparing your Child for Adult Care

Teens can take a short IBD Skills Quiz, about skills they may need for their journey with IBD as adults. At the end of the quiz, they will receive feedback and encouragement on what they can do to prepare to manage IBD on their own. Share the quiz with your child, or take it together as a family.

IBD Community

Learn from patients and caregivers about their clinical trial experiences. Visit our Clinical Trial Patient Stories page housed within the Clinical Trials Community. Each story offers a unique and personal perspective, along with providing knowledge you can use if you are interested in clinical trial enrollment.




Join us in Las Vegas! Run or walk the Las Vegas Strip with your Team Challenge Family at the Rock n Roll Las Vegas Marathon, Half Marathon, 10K & 5K on November 17th. Contact Brianne at [email protected] with questions! 

Can’t make it in November? Learn more about our other Team Challenge events at

Spin4 Logo

Registration is now open!

spin4 crohn’s & colitis cures – September 15, 2019

Learn more and Reserve your bike here! Location: Underground at Ink Block – 90 Traveler St, Boston, MA 02118

For questions please email Brianne at [email protected].


The Western Mass Take Steps is about to kick into high gear!

Saturday, October 5, 2019 (13 weeks away!)

Stanley Park, 10AM Festival, 11AM Walk

Register Today

Save the Dates 

Camp Oasis 
Tuesday, August 20, 2019 - Sunday, August 25, 2019 | Camp Scatico, Elizaville, NY

Rhode Island Patient Education Program 
September 2019 | TBD

spin4 crohn’s & colitis cures 
Sunday, September 15, 2019 | Boston, MA

Take Steps Walk Western MA
Saturday, October 5, 2019 | Westfield, MA

Fete for Crohn's & Colitis
Saturday, November 2, 2019 | Museum of Fine Arts, Boston, MA

Western MA Patient Education Program 
November 6, 2019 | Holyoke, MA 

Maine Patient Education Program 
November 2019 | TBD

Pediatric Patient Education Program 
December 2019 | TBD

Boston Take Steps Awards Party 
TBD | Boston, MA

Royal Flush Casino Night
Saturday, Feburary 2, 2019 |Commonwealth Hotel, Boston, MA