By: Madhura Balasubramaniam, Sharan Khela & Tina Aswani-Omprakash
Our patient advocate team, SAIA’s IBDesis, were honoured to participate in the American College of Gastroenterology’s (ACG) Annual Scientific Meeting in Philadelphia, PA, USA, between October 25th to October 30th, 2024. As patient advocates, we are grateful for the opportunity to learn about the latest advancements in the IBD and GI space more broadly. Here are some of our key takeaways from the conference!
Understanding the Treatment Landscape (Madhura Balasubramaniam)
Dr. Miguel Regueiro provided a comprehensive overview of the various therapies available today to treat IBD and their safety profile, as illustrated by the safety pyramid:
It is very heartening for us patients to hear that many of the newer IBD therapies that are being approved have excellent safety profiles. Even though many therapies are still not available in India, we at SAIA are advocating for greater access to medications and to clinical trials of new and existing medications.
As Dr. Regueiro emphasized, sometimes “colorectalomab,” meaning surgery, may be the best option for patients. Surgery is NOT a last resort and needing surgery is NOT a failure on the patient’s part. Rather surgery is an important part of the IBD treatment toolkit and can significantly improve a patient’s quality of life.
Finally, Dr. Regueiro stressed that not treating the IBD effectively is also an adverse effect. If a specific treatment option is not controlling disease activity sufficiently, it is important for us to advocate for ourselves to optimise our treatments or switch to a different, more effective therapy.
Treat-to-Target Strategies (Sharan Khela)
In order to understand our response to IBD medication(s), it’s important to pay attention to treat to target strategies.
Attending Dr. Miguel D. Regueiro’s session on managing complex Crohn’s disease at ACG 2024 was an eye-opening experience, particularly because it highlighted a treat-to-target (T2T) approach that feels revolutionary compared to the current standard in the UK under the NHS. The T2T approach prioritizes specific, measurable outcomes such as clinical remission, endoscopic healing, and biomarker normalization. It is proactive and emphasizes regular monitoring and adjustments, including therapeutic drug monitoring (TDM) to ensure optimal use of advanced therapies. This method contrasts sharply with the step-up approach I’ve often experienced in the NHS, where patients typically begin with less potent therapies like amino-salicylates or corticosteroids before moving to biologics or advanced treatments, often only after other options have failed.
What stood out to me most to me in Dr. Regueiro’s session was how the step-up approach can delay access to effective treatments, potentially leading to disease progression and complications. Dr. Regueiro’s emphasis on early intervention and timely escalation aligns with the idea that achieving remission early in the disease course could improve long-term outcomes and quality of life for patients. For instance, he stressed the importance of using biologics early post-surgery to prevent recurrence, supported by frequent endoscopic evaluations to catch relapses before symptoms arise.
In the UK, delays in diagnosis, long wait times, and a preference for cost-effective treatments can limit timely access to advanced therapies. While the NHS provides excellent care and equity of access, adopting a T2T framework could revolutionize how IBD is managed, ensuring that patients receive the most appropriate therapy when they need it. Reflecting on this session, I feel that moving toward a T2T model could improve outcomes for IBD patients, including myself, in the UK, replacing the reactive nature of step-up therapy with a more proactive and patient-centered approach. This shift would not only reduce complications but also improve the overall efficiency and efficacy of care in the long term, allowing patients like us to live fuller lives.
Poster Sessions (Madhura Balasubramaniam)
The poster sessions provided a snapshot into the phenomenal research in the gastroenterology space – ranging from IBD, liver conditions, disorders of gut brain interaction (DGBIs), and so much more.
Prevalence of Persistent Gastrointestinal Symptoms in IBD Patients with Endoscopically Quiescent Disease by Samaha, Dueker, Schwartz et.al., studied the presence of GI symptoms in IBD patients whose disease was otherwise in endoscopic remission. Their poster stated that more than two thirds of patients with Crohn’s and half of patients with UC met the Rome IV criteria to be diagnosed with IBS-D. The authors note that IBD patients often may have overlapping DGBIs like IBS or other conditions like Bile Acid Diarrhea (BAD) that are driving symptoms and negatively impacting their quality of life, and it is important to identify and treat these conditions appropriately.
A Novel Remote Patient & Medication Monitoring Solution to Improve Adherence and Persistence with IBD Therapy. One of the award-winning posters of ACG 2024 by Axelrad, Sapir, Horst et. al., tackled the challenge of monitoring whether patients are taking their medication as prescribed. Since nonadherence to medication is associated with worsening disease and complications, their poster studied the role of a web-based remote monitoring system called Tappt that tracks and encourages patients to adhere to their treatment. Using smart labels and infusion cards, the Tappt system keeps tabs on whether patients are taking the medication as prescribed and sends an alert to their clinical team if patients are not able to adhere to the treatment plan. This poster points to the growing role of technology in supporting patients through their disease journey and ensuring improved outcomes by closely monitoring medication use.
Living with chronic illnesses is a full-time job and it is often easy to fall off track with medication regimen. Being a patient living in India, I am of the perspective that access to such technologies to support adherence can be very helpful in countries in the developing world as health literacy levels may be low and may lead to patients struggling to stay on top of their prescriptions.
U.S. FDA Session on the Use of Health Technologies in Gastroenterology (Tina Aswani-Omprakash)
Emerging from the growing role of technology in patient care, there was a novel session at ACG 2024 presented by gastroenterologist, Dr. James M. Scheiman, MD, FACG, of the FDA on the use of health technologies, particularly wearables, smartphones, and artificial intelligence in the GI field. The session summarized the FDA’s growing role in assessing risk and harm vs. benefit in the utilization of these technologies. It also reviewed when devices needed the oversight of the FDA. One of the key takeaways of the session was that it’s important to have the FDA assess the gravity of potential adverse events, the probability and duration of said adverse events in addition to evaluating the risk of false-positive or false-negative results for diagnostics.
It was interesting to note that the FDA is growing its role in overseeing and regulating these technologies and it would be good to have more FDA-approved technologies that are evidence-based and have clinical trials that can help us patients monitor and thereby improve our quality of life with GI conditions.
While I recognize the importance of technology and AI in the precision of reading colonoscopies or in monitoring compliance to medications, for instance, I worry about an eventual over-reliance on these tools to someday deliver care. I appreciate having real heart-to-heart conversations with my doctors about my symptoms and what I may be going through emotionally. And I personally don’t feel that AI can create trust in healthcare systems and medications and surgery the way a human doctor can. I am glad we are starting to have these conversations, and we need to have a lot more of these discussions as health technologies evolve.
Closing Thoughts
All in all, ACG 2024 was a delightfully educational experience from the patient perspective. Not only did SAIA host a phenomenal cultural event across the street from the conference, but we also got to take in a breadth of knowledge through multiple physician researchers and the FDA. We are thrilled and so grateful to have attended and supported the work of many brilliant leaders within the ACG family and look forward to a brighter future for patients with GI conditions.
Originally published on SAIA’s blog on December 3rd, 2024: https://southasianibd.org/patient-experience-acg-2024/
