Provide Better Care: PBC Awareness Day 2024

“We’re often asked, what is the PBC journey? And the challenge is that, well, the PBC journey doesn’t exist. There are thousands and thousands of patients around the world, and each of them have an individual journey.”

This PBC Awareness Day, celebrated on the second Sunday on September each year, we had the opportunity to sit down with Robert Mitchell-Thain, patient advocate and CEO of the PBC Foundation, to delve into their theme this year: Provide Better Care.

Primary Biliary Cholangitis (PBC) is a rare cholestatic liver disease affecting about 1 in 1,000 women over the age of 40.^1,2 Although it’s more common in women, around 10% of those affected are men, and that number is increasing.¹ Caused by a buildup of bile in the liver that leads to organ damage, PBC can severely impact quality of life. Those affected often endure debilitating itching and extreme fatigue, symptoms that can be incredibly tough to live with.

It’s important to remember, however, that everyone’s experience with PBC is different. For some, the disease progresses quickly, while for others, it might take years or even decades.³ The symptoms they experience can vary significantly too, as can their experience with healthcare professionals.

The Provide Better Care campaign is a powerful reminder of this. It highlights how important it is to listen to people living with PBC, so they can get the care that really matters to them—whether that’s slowing down the disease to avoid a liver transplant – which is the priority of care for all patients or finding relief from symptoms to improve their day-to-day life, or both.

“When we focus on providing better care, the key principle is who’s in front of me and how best do I treat them? And for a clinician, that means listening to your patient. And for a patient, that means talking to your doctor.”

To hear more about the Provide Better Care campaign, visit the PBC Foundation’s website, here.

References

National Organization for Rare Diseases. Primary Biliary Cholangitis. Available at: https://rarediseases.org/rare-diseases/primary-biliary-cholangitis/. Accessed August 2024.
Hirschfield GM, et al. A consensus integrated care pathway for patients with primary biliary cholangitis: a guideline-based approach to clinical care of patients. Expert Rev Gastroenterol Hepatol. 2021. 15(8):929-939.
British Liver Trust. Primary Biliary Cholangitis. Available at : https://britishlivertrust.org.uk/information-and-support/liver-conditions/primary-biliary-cholangitis/. Accessed August 2024.