It’s been nearly a decade since the first time I spoke as a patient advocate within ImproveCareNow. Joining ICN’s Patient Advisory Council (PAC) has given me a platform to share my story and vision for the future of IBD care. I have had the privilege of being in the PAC for over five years, serving as a PAC Co-Chair, and in my current role representing patients on ICN’s Board of Directors. This entire time, my patient advocacy has been for a medical audience, whether that be members of our ICN community or other learning health networks.
Recently, I had the opportunity to extend my patient advocacy to the policy world in hopes of making an even greater impact.
In early December 2025, I joined the Healthcare Nutrition Council and another patient advocate on Capitol Hill to discuss the importance of recognizing the full spectrum of nutrition in legislation. We met with Senate and House offices and held a Congressional briefing about the importance of protecting access and coverage for oral nutrition supplements, medical foods, and other non-traditional forms of nutrition.
Alternative forms of nutrition have completely altered my disease journey, as they have for many other IBD patients. Due to my severe case of Crohn’s disease, I was incredibly malnourished and constantly fatigued in childhood. I remember being 8 years old and sitting on the sidelines of a soccer field, watching my twin sister and all of our friends play together. Instead of playing with them, I huddled in a chair with my jacket and gloves even though it was springtime. At that time, I was too sick to play on a soccer team, let alone keep myself warm.
Enteral nutrition was the only thing that really helped me gain weight and energy. After failing countless steroids, immunomodulators, and biologics, enteral nutrition helped me finally get the nutrition I desperately needed—although anyone who’s met me in person knows I never caught up on the height curve! I used nasogastric (NG) tube feedings five nights a week for 2.5 years between the ages of 9 and 11. I gained weight, strength, and energy until I was finally strong enough to join the soccer team later in elementary school. I had struggled so much with Crohn’s as a kid and been unable to participate in normal childhood activities, so something as simple as joining a soccer team meant the world to me (as terrible as I was at the sport).
There have also been times when alternative forms of nutrition have been the only source of nutrition for me. In freshman year of high school, I was hospitalized when my doctors discovered that my colon was almost entirely obstructed. I was given two options: have my entire colon removed in an emergency surgery, forever changing my life at age 15, or stop all oral nutrition immediately while doctors frantically searched for solutions. I chose the latter.
For three months, I was allowed almost only liquids. My only source of nutrition was total parenteral nutrition (TPN), a line in my vein that fed me while I couldn’t eat. This bought me precious time to try other treatments, like a diverting ostomy surgery. I eventually had a subtotal colectomy years later, as the scarring in my colon was too extensive. But TPN bought me precious time to try other options, and it enabled me to leave the hospital and finish freshman year on time with my twin and my friends.
Sharing this story for members of Congress was one of the most meaningful moments in my near-decade of patient advocacy work. “You’re hearing from me,” I told the staffers, “because I am a story of access.” There are so many patients who need these forms of nutrition but cannot afford them. I was fortunate that my insurance covered enteral nutrition and TPN, but many patients cannot get adequate coverage to afford these treatments. We always have an obligation to advocate for patients who are not in the room where these decisions get made.
This marks a significant new direction for my patient advocacy work. My experience with ICN has enlightened me to the barriers to accessing care that many patients face, as well as the gaps in lived experience that our network has. This is what inspires my career in health policy, as I currently pursue a Master of Public Health at George Washington University focused on strengthening coverage and affordability for low-income patients.
I hope this can be a new direction for the network as well. Our work in ICN has absolutely transformed the quality of care for pediatric IBD patients. As I shared at the Fall 2025 ICN Community Conference, I have personally benefited from ICN’s many achievements. For example, ICN’s implementation of standard BMI collection at visits occurred around the time I was being diagnosed. Collecting this information helped my doctor track my growth and likely motivated the suggestion for treatments like enteral nutrition.
These many advancements in healthcare quality are only helpful for the patients who can access care at ICN centers. Policy advocacy presents an opportunity to use patient stories to transform access. It’s essential that we address both access and quality of healthcare so that the significant achievements ICN has made can be felt by as many patients as possible. I am proud of the network for its increasing attention to the social drivers of health that influence access to high-quality care. We still have so much more to do. Let’s unlock the full potential of patient storytelling for policy advocacy, and as I said on the Hill, make my story of being able to access the care the story of all patients.
Everything we do in ImproveCareNow is magnified by the efforts of thousands of improvers! No action is too small; here are some ways to get started:
💚 Join the Patient Advisory Council (pediatric patients with IBD who are 14+)
💙 Join the Parent/Family Advisory Council (parents/caregivers of young people with IBD)
💚 Participate in our Current Research Opportunities (subject to eligibility)
💙 RSVP to join us at one of our upcoming ICN events
💚 Subscribe to blog updates to stay #InTheLOOP with our IBD stories
💙 Download, use & share our free, co-produced IBD resources
💚 Connect with our welcoming & supportive pediatric IBD community and receive IBD resources, community stories, and ICN updates & opportunities
💙 Donate to ImproveCareNow – we are proud to use every dollar donated to advance our mission!
Our mission is to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.
