AASLD Meeting 2018

This year we attended the American Association for the Study of Liver Disease in San Francisco.  It was a great opportunity to meet with PBC specialists from across Canada.  At the meeting we had the opportunity to see updates on clinical trials taking place around the world as new drugs are developed to treat PBC. 

New Treatments:
From Cymabay Therapeutics  we heard the results of the Phase 2 trial for a new drug called Seladelpar.  Based upon the positive results already seen in PBC patients enrolled in Phase 2, a phase 3 study will begin in November.  This 52 week study will involve 240 patients with the following sites already established in Canada and more to come on board in the near future.  Currently locations in Canada include:  Calgary, Toronto, Montreal and Winnipeg

Last year, Glaxo Smith Kline, began a Phase 2b clinical trial for their product GSK2330672; enrollment completion is expected by September, 2019, with Canadian sites in: Montreal, Winnipeg, Calgary, Edmonton, and London.   The study involves 7 site visits and recording of itch daily using a specially designed personal hand held device. 

Recent Studies:
Several interesting studies were highlighted during the conference including the following presentations:

Brain changes found in people with PBC – Conclusions “Our findings suggest that oxygen delivery may play an important role in brain changes associated with chronic cholestatic liver disease.  NIRS markers of oxygenation and cerebrovascular activity were altered in patients with PBC, and normalized with effective UDCA treatment. These findings support the use of partable and non-invasive near-infrared spectroscopy (NIRS) as a useful neuroimaging tool to study brain changes in patients with liver disease.”

Benefits of Telehealth in Liver Transplantation in serving remote communities – Conclusions:  “No statistically significant difference was noted between the two group in terms of distance from transplant center.   Patients seen by telehealth experienced no delay in the time from referral to initial evaluation or listing decision.  Therefore, telehealth can reliably be used to triage patients for liver transplantation without impacting the time to evaluation or listing.  Telehealth may reduce travel burden, overcome geographic disparities and increase access to specialized services by connecting patients needing transplantation earlier in their disease course (lower MELD-Na) comparable to those evaluated by standard of care.  Further study on the impact of telehealth on transplantation access, outcomes and cost for the Veterans Health Administration are warranted.”

Increasing Prevalence of PBC in Canada: looking at years 2005- 2015  this University of Calgary study finds increased prevalence of PBC in Canada.  Presentation also highlighted better transplant free survival for those taking UDCA (Urso).
Upcoming studies:
Mindfulness to improve PBC – Based upon the success of a study using mindfulness to improve quality of life and blood work for patients with Autoimmune Hepatitis, this 8 week study will begin for PBC in January 2019.  We look forward to the results.
Care Pathways:
Dr. Gideon Hirschfield introduced PBC Patient Care Pathways, for PBC diagnosis, treatment and management.  See full presentation here.

Winnipeg, MB Living Well with PBC Workshop

We arrived in Winnipeg for our Living Well with PBC Workshop on October 20, 2018.  We got off to a good start with a mild sunny day.  Our amazing group of participants came ready to share their PBC stories and support each other.  The morning focused on learning more about PBC and the most effective ways for us to monitor our PBC along with our specialists.  In the afternoon we took time to reflect on satisfaction in different aspects of our lives.  Then after a series of steps, we identified areas small changes that we could make that would improve our quality of life.  Of course all of this was done by individuals and was specific to their life and situation.  We wish each of our participants trying out some small changes all the best!!!

Calgary, AB Living Well with PBC Workshop

On October 14, 2018 a fine group of PBC patients and family members came together in Calgary, AB to participate in our Living Well with PBC Workshop.  We spent the first half of the day getting to know each other and learning more about PBC – focusing on aspects of PBC that we should monitor and discuss with our PBC specialists.  In the afternoon the focus was on identifying areas where individuals want to make small changes to improve quality of life.  We focused on manageable changes that we could begin on “Tuesday”.  Many participants have already started created new habits to help them live well!

Duncan, BC Dinner Meeting

On October 11, 2018 we gathered with the Cowichan community in Duncan BC to hear Dr. JP Wallach talk about PBC.  Dr. Wallach explained that PBC is an autoimmune disease where there is a genetic predisposition that is triggered likely by some environmental factor.  For many years liver disease carried a stigma and Dr. Wallach is working hard to dispel the inaccurate stereotypes that sometimes go along with liver disease.  We want to make sure people understand that they have done nothing to cause their PBC;  it is not brought on by alcohol use or lifestyle choices.  These important messages are supported by our medical community and it is important that our entire community know this.

Vancouver Dinner/Speaker Meeting

On October 10, 2018 a large group gathered to hear renowned PBC expert Dr. Eric Yoshida speak about PBC and answer questions from PBC patients and their family members in attendance.  BC Regional Coordinator thanked Dr. Yoshida on behalf of all of the attendees.  It was a very informative and enjoyable evening.  See all the photos in our photo gallery.

Victoria, BC Living Well with PBC Workshop

Our Living Well with PBC Workshop was held in a residential party room in Victoria on October 13, 2018.  The patients and family members attending were able to create a warm and supportive environment where we discussed living with PBC and made individual plans for small changes that we could implement “Tuesday”.

PBC Awareness – Atlantic Canada

In July, the Canadian PBC Society headed east to Newfoundland, Nova Scotia and New Brunswick meeting with patients, physicians and government to spread PBC awareness.  In Dartmouth we held a PBC Self Management Workshop;  in Fredericton and  St. John’s  PBC patients and family members came together to support one another. Newly diagnosed and PBC veterans shared stories and agreed to keep in touch!

PBC Patient Guidelines

This year the PBC Network created a 36 page booklet “PBC – Living With Your Diagnosis” . The Canadian PBC Society participated in the final review of this comprehensive patient guideline and is now a proud member of the PBC Network.  Read the guidelines here.

Winnipeg Dinner Meeting

On  June 7, 2018 the Manitoba/Saskatchewan Region came together for a PBC Dinner Meeting led by Carol Seburn, Canadian PBC Society, Regional Coordinator.  At the Old Spaghetti Factory in Winnipeg both newly diagnosed and PBC veterans met to share stories and support each other.

Montreal Dinner/Speaker Meeting

On May 30, 2018 Dr Catherine Vincent spoke to a large group of PBC patients, friends and family.  Dr. Vincent discussed details of PBC diagnosis, treatment, symptoms, prognosis and answered many questions related to the current thinking on the cause and treatment of PBC. It was wonderful to hold our first event in Montreal and we were very happy to be able to introduce our french website www.societe-cbp.ca