Obeticholic acid (Ocaliva) has recently been licenced in Canada for the treatment of people with PBC who have not fully responded to, or who are unable to tolerate, Ursodeoxycholic acid. You may have seen a recent news report from the U.S. regarding some serious adverse outcomes for PBC patients whose prescribed dose of Ocaliva was significantly higher than that recommended and approved by the FDA. This appears to be an issue primarily among patients who have advanced cirrhosis, some of whom have experienced liver injury, liver failure, and even death. We feel it’s important to make sure you are aware of this issue. If you are being treated with Ocaliva and have any questions or concerns about the appropriate dosage level for your stage of PBC, you should talk to your doctor.
The American Association for the Study of Liver Diseases published findings that the ASK1 Inhibitor Selonsertib reduced liver fibrosis in stage 2-3 liver fibrosis. In late 2016 Gilead announced that Selonsertib was being tested with “GS-9674″ an FXR agonist for PBC. Read more click here.
We were excited to attend our first ever Global Genes Rare Disease Conference in Irvine, California September 14-15, 2017. Joining together with many rare disease patient groups, researchers, clinicians and scientists – all working on discovering cures – we were able to share stories and learn strategies to tackle the many challenges facing those with rare diseases.
On Tuesday, September 12, 2017 a delegation from the Canadian PBC Society met with elected MPPs and Ministry of Health staff at Queen’s Park Legislature in Toronto in our first PBC Awareness Day. Meeting in small groups, MPP’s asked lots of questions and PBC members related personal stories and concerns. With a full day of meetings and a lovely lunch in the legislative dining room we are hopeful that our voices have been heard and are needs will be addressed. We plan to be back next year! See more photos in our photo gallery.
On September 6, 2017 in honour of International PBC Day, a group from the USA and Canada met over lunch in Niagara Falls, NY. This was our 2nd annual cross-border lunch. Next year our lunch will be back on the Canadian side of the Falls. We hope you will plan to join us as we share stories and get to know each other. It is always good to talk to people about our rare disease to see what we have in common and understand our differences.