This is the last of four PBC Profiles that will appear in the National Post Patient Diaries Series. One of the best ways to raise awareness about PBC is to get our stories told, leading to early diagnosis and treatment.Read full article
The Canadian PBC Society is excited to share that a new treatment option for PBC is on it’s way, thanks to the recent Canadian conditional approval of obeticholic acid, otherwise known as Ocaliva, or OCA. According to a recent release by Intercept Pharmaceuticals, Health Canada has issued a conditional Notice of Compliance for Ocaliva, which is indicated for the treatment of PBC, in combination with URSO, or as monotherapy for those who cannot tolerate URSO.
This is the first new treatment for PBC in 20 years. “I’m thrilled that another treatment has finally been approved. I have spoken to so many patients that have been waiting for other treatments to become available because URSO isn’t working for them,” said Gail Wright, Canadian PBC Society President. “Our community is so energized by this news, and we look forward to our members being able to manage their disease more effectively.”
We anticipate that patients will be able to receive access to OCA in a number of different ways, including private insurance, provincial pharmacare plans and compassionate support programs. We’ll be happy to provide more details as they come available. Read full press release
Starting in Halifax in May, 2017, the Canadian PBC Society met with government health policy experts, decision-makers, medical professionals, and PBC patients and their families to talk about the ongoing work to find a cure for PBC, the critical need for early diagnosis of PBC patients, treatment options and the implications of disease progression for patients and their families.
In 2016, we designated the proceeds of the Canadian PBC Society’s signature fundraising event, A Day at the Races, to support PBC education, awareness and research at the Toronto Centre for Liver Disease.
More than $11,000 was raised through the event and these funds have now been committed to a special project that will help enhance and leverage the national PBC patient registry that is being established through CaNAL (Canadian Network for Autoimmune Liver Disease).
The CaNAL registry will make it possible to track and follow-up patient medical history and all relevant clinical events over the long term – and on a national scale. The registry will include both existing and newly-diagnosed patients.
We’re encouraged to see that this national research initiative is intended to achieve the following results for patients who are living with PBC:
Through our support, we are helping to build awareness of the registry among patients at CaNAL sites. This will include opportunities for patients like you to participate in current and future studies, and will help to bring new CaNAL sites into the network.
See the first Canadian PBC Prevalence study published March, 2017. The objectives of this study were to estimate and characterize the PBC population and associated PBC liver transplant recipients across Canada.
Read full study
It is with great sadness that we announce the passing of Maureen Hill. Many of you will remember Maureen as an active member of our Edmonton group. We will miss Maureen’s warm and caring nature.