Turning ambition into action: improving care for women with primary biliary cholangitis
Robert Mitchell-Thain, Chief Executive Officer, PBC Foundation
Primary biliary cholangitis (PBC) may be rare, but its impact on women can be profound, leaving too many undiagnosed for years. It’s time to raise awareness, improve care, and turn policy promises into action.
This article was initiated and funded by Ipsen UK Ltd and was produced in collaboration with the PBC Foundation. EXT-GB-000014 | November 2024.
I’d like to discuss the profound impact of fatigue – not just any fatigue, but the kind that renders you unable to lift your arms to dry your hair or hang up wet laundry. This fatigue, combined with the stark reality of being told you have only five years to live, underscores the severity of PBC. Then there’s the relentless itch, likened to thousands of ants crawling beneath your skin, causing an uncontrollable burning sensation deep within.1
For far too many patients, this is the harsh reality of living with PBC, an autoimmune condition that affects the liver over time, preventing it from performing its essential functions. If left untreated, PBC can lead to liver failure and premature death.2 Despite being easily diagnosed and treatable, PBC remains significantly underdiagnosed, leaving countless patients without the support and treatment they desperately need.
Approximately 25,000 people in the UK are living with PBC,3 and nine in every 10 patients are women.4 Most commonly occurring in women aged 40 to 60, many experience symptoms that are mistaken for the menopause, delaying crucial diagnosis and treatment.5 It’s imperative that these women are identified and treated promptly.
Despite the serious implications of PBC, the care pathway is often inconsistent and inadequate. Access to appropriate and timely care varies greatly depending on where people live, and at present no single treatment centre in the UK meets all quality standards for PBC care.6
So, what can be done? The previous government laid important groundwork by recognising the broader issues facing women’s health through initiatives like the Women’s Health Strategy for England and the England Rare Diseases Action Plan.
But recognition isn’t enough, and much more must be done to address the challenges that women with PBC face daily. The PBC Foundation plays a pivotal role in bringing this under-recognised condition into the spotlight and driving forward changes to ensure that PBC patients receive the care they need, wherever they are. This is why we have launched Project 90:90, a PBC Community initiative to Provide Better Care with the ambition for 90 per cent of PBC patients to receive 90 per cent of the care recommended by the care standards in PBC guidelines.
More is needed to improve earlier diagnosis, as misdiagnosis or delayed diagnosis risks worsening outcomes for women. Primary care practitioners must be better equipped to spot the symptoms of PBC and refer patients for timely investigation.
Clear PBC care pathways and updated treatment guidelines are essential. That means dedicated multi-disciplinary and holistic support for patients throughout their journey, from diagnosis to symptom management, including mental health support, physiotherapy, and specialised nursing. We must ensure that every patient has access to routine follow-up care, so symptoms are managed properly and treatments are adjusted as needed.
Without significant pathway reform, the burden on the NHS will only increase as more PBC patients require liver transplants – an option that is far from guaranteed to cure the disease and which brings its own set of challenges. From April 2023 to March 2024, PBC accounted for 7 per cent of all liver transplants in the UK. This figure alone underscores the urgent need for better, earlier intervention.7
PBC might be rare, but it’s not invisible. Now is the time to shine a light on this condition, ensure that the healthcare system is equipped to meet the needs of those who live with it, and turn ambition into action.
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To learn more about the PBC Patient Journey, you can speak to the PBC Foundation’s founder, Collette Thain MBE, by contacting the Foundation directly (www.pbcfoundation.org.uk).
Ipsen contact: Sam Howland, Head of Communications, Ipsen, U.K. & Ireland (sam.howland@ipsen.com).
About Ipsen: We are a global biopharmaceutical company with a focus on bringing transformative medicines to patients in three therapeutic areas: Oncology, Rare Disease and Neuroscience.
Our pipeline is fuelled by external innovation and supported by nearly 100 years of development experience and global hubs in the US, France and the UK. Our teams in more than 40 countries and our partnerships around the world enable us to bring medicines to patients in more than 80 countries.
Ipsen is listed in Paris (Euronext: IPN) and in the US through a Sponsored Level I American Depositary Receipt program (ADR: IPSEY). For more information, visit ipsen.com.
About the PBC Foundation: Set up in 1996 by Collette Thain MBE (a PBC patient who was given five years to live), the Foundation provides information and support, advocates for patients in need of live-preserving treatments, and helps with much-needed research into this debilitating, incurable condition.
You can speak to Collette today for support in your own journey – or to learn more about hers – by contacting the Foundation directly. For more information, visit www.pbcfoundation.org.uk.
1. PBC Foundation (2024). PBC Symptoms. Available at: https://www.pbcfoundation.org.uk/what-is-pbc/symptoms/ (Accessed October 2024)
2. Akamatsu N, Sugawara Y. Primary biliary cirrhosis and liver transplantation. Intractable Rare Dis Res. 2012;1(2):66-80.
3. Webb GJ, Ryan RP, Marshall TP, Hirschfield GM. The Epidemiology of UK Autoimmune Liver Disease Varies With Geographic Latitude. Clin Gastroenterol Hepatol. 2021 Dec;19(12):2587-2596. doi: 10.1016/j.cgh.2021.01.029. Epub 2021 Jan 22. PMID: 33493696; PMCID: PMC8661127.
4. Society for Women’s Health Research (2020). 9 in 10 People With This Rare Liver Disease Are Women. Available at: https://swhr.org/9-in-10-people-with-this-rare-liver-disease-are-women/ (Accessed October 2024)
5. Sun, Y. et al. (2015). Women and Primary Biliary Cirrhosis. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9719371/ (Accessed October 2024)
6. Abbas, N. et al. (2023). Critical shortfalls in the management of PBC: Results of a UK-wide, population-based evaluation of care delivery. Available at: https://pubmed.ncbi.nlm.nih.gov/38089546/ (Accessed October 2024)
7. NHS England (2024). Annual Report on Liver Transplantation. Available at: https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/34641/nhsbt-liver-transplantation-report-2324.pdf (Accessed October 2024)
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