The 2021 4-nation NHS audit of PBC care highlighted concerns about patient care and the need for improvement across all four nations.

It was difficult to imagine a world where 90% of PBC patients accessed 90% of the care standards in PBC guidelines. However, the PBC Care Bundle was published in 2024, and the situation has improved dramatically.

Smith et al published their findings from 12 hospitals, of varying sizes and expertise, that using the care bundle enabled more PBC patients to access the care standards in current guidelines, with almost every measurable attaining the threshold of 90% of patients.

The fundamentals of care are covered, e.g.

• Optimal dose of Ursodeoxycholic acid (UDCA).
• Ursodeoxycholic acid (UDCA) response assessed
• Second-line therapy discussed
• Symptom burden discussed
• Appropriate DEXA scan
• HCC screening in patients with Cirrhosis

At the 2024 International PBC Summit, it was agreed to drive an international campaign: Project 90/90, and to advocate for these care levels in every country. There was a formal launch in Oct 2024 and there have been patient materials supporting this campaign published in 15 languages to empower patients to have these conversations with their clinicians.

Project 90:90 brings together healthcare professionals, pharmaceutical companies, patients and patient organisations with our common goal to make a higher level of care the norm and not the exception for every PBC patient.

The benefits are tangible, with more patients accessing better care, which can only be positive for patients and their families, hospital units, budgets and clinicians.