PBC Patient Conference 2018 – Report

The Biennial PBCers Patient Conference was held May 17-19 this year in Houston, Texas.  The conference brought together over 100 PBC patients from across the USA to focus on:

 

  • diagnosis and treatment
  • symptom management
  • research
  • clinical trials and imaging tools
  • time for patients to meet and share experiences

 

I had the privilege of attending the conference on behalf of Canadian PBC patients, and these are some of the highlights that I took away from the many excellent presentations and discussions.

 

DIAGNOSIS AND TREATMENT

Dr. Robert Gish kicked off the conference with his presentation “Management of Liver Disease & Other Complications”, emphasizing the importance of looking at the whole patient, including managing symptoms and quality of life in addition to managing the disease. Dr. Gish provided valuable insights into itch, fatigue, oral and vision health.  He gave favorable mention to coffee, some statins, vitamins and regular exercise as beneficial to those with PBC.  He also recommended that PBC patients be screened for celiac sensitivity as 7% of PBC patients are affected.
Dr. Chris Bowlus, spoke via video, sharing his philosophy of care, “listen to the patient”.  He spoke about PBC diagnosis, treatment and referenced many studies regarding PBC outcomes.  He shared a link to the Global PBC Score, where patients can assess their risk factors for disease progression. http://www.globalpbc.com/globe

Dr. Kidist Yimam gave a talk on “Autoimmune Liver Disease & Associated Diseases”.  She focused on the importance of the recognizing the potential risk factors for 1st degree relatives of those with PBC and screening for AMA positivity.

 

SYMPTOM MANAGEMENT

Dr. Jennifer Pate focused her talk on fatigue and its relationship to depression and anxiety – including symptoms and sources, obstacles to diagnosis, associated medical conditions, drugs that may cause depression, treatment consisting of behavioral strategies and medication. She stressed the importance of having a sense of purpose.  Dr. Pate was diagnosed with PBC, giving her a unique perspective. 

Dr. Marlyn Mayo gave a comprehensive talk on how we measure, treat and lessen the impact of PBC itch.

 

RESEARCH

Dr. Eric Gershwin gave us a tour via video of his lab at UC Davis, where research involves working with mouse models to predict who will get PBC, with the hope of being able to use biomarkers for early detection and individualized treatment.  

Dr. John Vierling provided a comprehensive description of “Overlap Syndrome” where patients have both PBC and AIH.   Between 1 and 10% of those with PBC have overlap syndrome.

PBCers Patient Survey was recently completed online.  You can find the results using this link:   https://www.surveymonkey.com/results/SM-F8TF8WS9L/

 

CLINICAL TRIALS AND IMAGING TOOLS

John Campbell, PhD gave an overview of the drug development process, highlighting the importance of patient participation in clinical trials.

Dr. Paul Boudes of Cymabay Pharma presented the Phase 2 results of Seladelpar a drug for PBC. Canadian sites for the trial include Toronto and Calgary

Dr. Preston Klassen of Arena Pharma presented early results of Etrasimod for PBC.  There are no Canadian sites for this trial.

Dr. Sudhakar Venkatesh from the Mayo Clinic presented evidence on the efficacy of Magnetic Resonance Enterography (MRE) imaging for liver disease.  I believe we have one MRE machine in Canada at the Toronto General Hospital.

Dr. Phillipe Wiesel of Genkyotek Pharma presented GKT831 a new clinical trial currently recruiting patients.  Interim results are expected in the Fall of 2018.  Canadian sites for this trial include Calgary, Winnipeg and Montreal.

Richard Kim and Dr. Cynthia Feng from Intercept Pharma presented “Our Partnership with the PBC Community – Past, Present & Future”.

 

CONCLUSION

It was wonderful to see so many PBC patients coming together to meet, talk, learn and share.  And it was a real privilege for me to have an opportunity to join them.  I learned a great deal about how other PBC patients are currently managing their disease.  I was also heartened to learn more about the many focused efforts that are being devoted to better diagnosis, treatment and management of PBC by so many dedicated physicians, clinicians and researchers.  My personal thanks to Carol Roberts, Cathy Mumford and Linie Moore from the PBCers Organization for welcoming me to the conference and for providing such a rich and informative agenda in a relaxed and inclusive environment.

 

 

 

London Dinner/Speaker Meeting

On May 10, 2018 Dr. Paul Marotta spoke to a sold out group of PBC patients, friends and family. Dr. Marotta presented “A New Understanding of an Old Disease” followed by a lively question period. If you would like a copy of the presentation contact us info@pbc-society.ca

International Liver Congress 2018 – Report

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)
New Scientific Findings

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.

Symptom Management

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.

Conclusion

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.