Representing the Canadian PBC Society, I was thrilled to attend my first International Liver Congress meeting, April 11-15th in Paris. The congress brought together over 10,000 attendees including top international liver clinicians and researchers, as well as industry and representatives of patient groups from around the world. The spotlight on PBC covered several areas including:
- diagnosis and treatment case studies
- poster presentations on new scientific findings
- symptom management symposium – largely driven by patient experience
- quality of life programs – a meeting of Intercept’s Practice to Policy award winners
- patient group collaboration meeting of the PBC European Network (which also includes Canada)
I was particularly excited to attend the presentation by Dr. Abdel Aziz Shaheen, from the University of Calgary, who presented findings linking the anti-depressant Mirtazapine to better outcomes for PBC patients. What an unexpected discovery! And it led us to ask, “could Mirtazapine become a treatment for PBC?” I was so proud that the Canadian PBC Society had funded this important research. Dr. Aziz’s presentation was so well attended that there weren’t enough headsets to go around. Next Dr. Aliya Gulamhusein, who frequently speaks at our Canadian PBC Society meetings, gave an informative presentation on predictors of transplant-free survival in PBC patients. Another great friend of the Canadian PBC Society, Edmonton’s Dr. Andrew Mason presented OCA POISE trial results with regards to gene expression in patients. Frankly, these last two were a bit over my head but they were well appreciated by the large audiences attending. Promising results were also highlighted from Cymabay’s Phase 2 trial for their PBC drug Seladelpar.
Diagnosis and Treatment
Dr. Gideon Hirschfield, Dr. Frederik Nevens, Dr. Michael Trauner, and Dr. Vincent Leroy each presented several cases of PBC patients who did not respond to URSO and how each was assessed and treated with OCA differently, depending on their specific circumstances. This was a good example of the practice of medicine as both art and science.
The European Liver Patients Association chaired a panel that spoke to the common symptoms of all liver disease including fatigue, pruritus, mental health, quality of life after transplant, sexual problems of liver disease, and the impact of self-management. One of the main messages was “currently we treat the disease but we don’t treat the symptoms of the disease” and, therefore, it’s critical to work together to understand self-reported symptoms and the importance of self-management for PBC patients.
Quality of Life
Intercept Pharma hosted an evening of Practice to Policy award winners who were invited to discuss projects, while identifying gaps to better understand the PBC patient experience. A PBC international survey was discussed and application for funding is currently underway.
Patient Group Collaboration
Patient groups from many European countries and Canada met to discuss areas for ongoing and future collaboration including: a patient survey, international PBC day 2018, PBC patient guidelines project and a network newsletter.
This network has been brought together with the assistance of Intercept Pharma, and Intercept President/CEO Mark Pruzanski stopped by to thank all the patient organizations and spoke of Intercept’s continued support for the “strengthening of patient groups away from kitchen table advocacy”. Mark reiterated Intercept’s commitment to the long-term support of rare liver disease, especially important to us as the anticipated focus on NASH grows in the next few years.
It was an honour to represent the Canadian PBC Society at the congress and it was wonderful to get to meet and talk with PBC key opinion leaders and patient group representatives who work tirelessly on behalf of all PBC patients. I look forward to collaborating on several exciting upcoming projects as part of the PBC Network.