EASL Meeting 2019

The International Liver Congress is a highlight of the year for liver physicians and patients. It is one of two international conferences where people meet and discuss new ways of looking after liver disease.  The conference is thematic as well as general in principal.  This year we have summarized the PBC-related research presented at the International Liver Congress 2019, EASL in Vienna, Austria for you.


New Treatments

Dr. Pietro Invenizzi presented preliminary results from a phase 2 (early stage of development) clinical trial on a possible future treatment for PBC, GKT831. At this time, 92 patients have completed 6 weeks of treatment and a reduction in biochemical markers of cholestasis was observed. The treatment appeared to be well tolerated with no signs of itch or fatigue. The novel thing about GKT831 is that it is focused on targeting liver scarring, which differs to some other drugs for PBC that are more focused on bile duct injury.

Summary slide from presentation by Dr. Pietro Invenizzi on GKT831.


Dr. Velimir Luketic presented results from a trial of two doses of elafibranor, another potential future treatment for PBC. This study reported that both doses of elafibranor reduced blood markers of cholestatis and improved lipid health. Elafibranor was well tolerated and was not associated with itch. This drug is moving towards a phase 3 trial (the stage just before it might be launched for sale).  The way this drug works is similar to drugs like Seladelpar (already a late stage trial in Canada recruiting now) and Bezafibrate (a drug sometimes given ‘off-label’ because it is not approved for patients with PBC).


Dr. Gideon Hirschfield presenting a summary of potential treatments for PBC in the future


Further insight into current treatments for PBC

Dr. Christophe Corpechot presented results showing that continued treatment with UDCA after liver transplantation lowers the chance of PBC recurrence and rejection of the new liver. This is interesting and mirrors what most Canadian patients get, which is now a continuation of UDCA after a liver transplant.

Lena Smets presented results showing that treatment with bezafibrate improved the effect of treatment with obeticholic acid in 16 patients. This combination of treatments showed positive effects on blood markers of cholestasis. In patients treated with obeticholic acid who reported itching, the introduction of bezafibrate decreased itch in more than 60% of patients. The combination of therapies was well tolerated. This highlights a possible treatment option for patients who do not respond to UDCA and obeticholic acid.  The future for PBC seems to be combination drugs and approaches that aim for patients to get as near normal tests as possible.

Dr. Marlyn Mayo presented results from an analysis of patients who received Seladelpar, a possible future treatment for PBC, as part of an ongoing phase 2 clinical trial. This analysis reported that Seladelpar improved blood markers of cholestasis in patients with cirrhosis and in patients without cirrhosis. Patients with and without cirrhosis both showed no increase in itch and Seladalpar was well-tolerated in both groups. These findings emphasize that Seladelpar is effective and safe in cirrhotic and non-cirrhotic patients. Seladelpar may be the next new approved drug for PBC; there is a big late stage trial ongoing now, which includes sites across the world and including in Canada.

Excerpt from Seladelpar presentation highlighting some of its important qualities


Dr Chris Bowlus and Dr. Andreas Kramer presented results of a 3-year study of patients treated with obeticholic acid. Their study showed that after 3 years, the majority of patients had improvement or no progression of liver fibrosis, had no progression in bile duct loss, and that markers of cholestasis and inflammation had gotten significantly better. They highlighted obeticholic acid as a promising treatment. Many Canadian patients are on obeticholic acid already (see below for the report of the Canadian experience of OCA).

 Symptom Management

A session for doctors on how to manage their patients’ itch highlighted the impact that itch can have on patients’ quality of life. Approximately 35% of patients report persistent itch, either frequently or all the time. The current treatments for itch were discussed, namely cholestyramine and rifampicin. The positive effects of bezafibrate on itch were highlighted, which may be a new way to manage itch in the future.

 Other Noteworthy Results

  • Marilyn J Mayo presented results demonstrating that obeticholic acid is safe and effective in patients with PBC and Autoimmune hepatitis overlap syndrome.
  • Cynthia Levy presented results demonstrating patients treated with obeticholic acid had reduced levels of HDL and total cholesterol but highlighted the need for more studies to confirm this.
  • Gideon Hirschfield presented results demonstrating that long-term treatment with obeticholic acid helps slow the progression of PBC and improved blood markers of inflammation and immune system health.
  • Jessica Dyson presented results from the United Kingdom showing that patients with PBC are disproportionately located in areas with coal mining activity. This was interesting because it reminded us that it is our genes and our environments that cause diseases like PBC.
  • Surain Roberts presented results from Toronto about the effectiveness of obeticholic acid prescribed outside of clinical trials. Results showed that obeticholic acid improved blood markers of cholestasis and inflammation consistent with results reported by clinical trials. These results further support obeticholic acid as an effective therapy for PBC.

Fiorella Murillo presented a decision-making framework that clinicians can use to decide when to refer their patients with PBC to a specialist. This may help better identify patients who need to be referred to a specialist.

Surain Roberts presented results about treatment goals for patients with Autoimmune Hepatitis from the Canadian Network for Autoimmune Liver disease (CaNAL). Stay tuned for PBC-related results from this national study in the future! 


Non-PBC Highlights

There were some noteworthy presentations not about PBC but which are of interest as they inform patients with PBC of things for the future.  First and foremost, the conference had a lot of new studies about a disease called non-alcoholic fatty liver disease (NAFLD).  This is going to be the most common liver disease worldwide because it is most often associated with being overweight. There were many talks about how to tackle this both through better awareness as well as lifestyle changes (diet and exercise). As this was a liver treatment conference, there were also results of trials of drug therapy.  For the PBC community, it is noteworthy that many of the drugs in development for PBC are also being developed for NAFLD, or at least the sub-group of patients with NAFLD who have inflammation and scarring in their liver. This is because the science behind inflammation in the liver seems to share similarities between different diseases.  Drugs such as Obeticholic acid, Seladelpar and the Genfit drug, all used in PBC either in clinic or in trials, are also being developed for fatty liver. In particular, we heard the interim results of trying Obeticholic acid in fatty liver and heard how there was evidence from a large study that the drug seemed to reduce liver scarring.  

Other highlights from ILC were about rare disease research and how rare disease communities can work together to make progress. An extremely rare disease called porphyria got a lot of attention, because a trial reported really quite amazing results of a special therapy that stops the wrong protein from being made in these patients.  The results were dramatic and attracted global news.  This report prepared for the Canadian PBC Society by Surain Roberts & Fiorella Murillo

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!

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.