Timothy Watkins, MD, MSc, Vice President, Clinical Development of Inflammation Therapeutics, Gilead Sciences

In approximately 1 in 1000 women worldwide over the age of 40 and in the US, as many as 65 out of every 100,000 women are diagnosed with a rare, autoimmune disease that can cause significant liver damage and potentially lead to liver failure if left untreated.

 This disease is known as primary biliary cholangitis (PBC).

 Although PBC is more common in women, we now know that more men than previously thought also have this disease.

Many people may not experience symptoms in the early stages of the disease.

 If this chronic liver disease is left untreated, it can progress to cirrhosis.

The journey to a PBC diagnosis can be long and challenging, especially when there may not be any signs of the disease that others can see.

 For many patients, the path to a PBC diagnosis can involve numerous testing and procedures.

First-line and second-line treatment options are available to patients. After 1 year on first-line therapy, one’s health care provider will assess treatment goals by looking at biochemical response.

 Some patients don’t meet treatment goals—this is known as an inadequate response to therapy. In such cases, several second-line treatments are available for appropriate patients who qualify.

Routine liver blood tests can reveal abnormalities.

 If PBC is suspected by one’s doctor, an antimitochondrial antibody (AMA) test is generally used to confirm a PBC diagnosis.

 For people living with PBC, some treatment goals include normalizing or improving a protein called alkaline phosphatase (ALP) and managing symptoms of the disease, such as pruritus.

 A treatment plan that helps sustain ALP levels and more effectively manages symptoms may help improve disease outcomes.

Symptoms can range from mild to severe and can develop slowly over 5 to 20 years.

 As the disease progresses, there is an increased risk of inflammation of the bile duct and scarring of the liver that may cause serious complications.

More than half of people diagnosed with PBC are asymptomatic and not all symptoms of PBC are visible.

 The symptoms that commonly appear—such as pruritus (chronic itch) and fatigue—are often invisible to others and may negatively affect daily life.

 The debilitating itchy skin that may be associated with PBC can have a profoundly negative impact on a person’s daily life and those around them and may also be associated with sleep disturbance, fatigue, and depression.

For patients living with PBC, it is important to connect with others who have similar experiences who can provide crucial support, in addition to support from loved ones.

 It is also important to have a supportive care team that listens attentively, thoroughly explains the treatment process, and presents all available options.

As research and awareness of PBC continue to grow, there is hope for those living with the disease.

 Advancements in medical science aim to improve both the understanding and management of PBC, offering patients new avenues for care and support.

After receiving a PBC diagnosis, it’s essential for patients to maintain close communication with their care team. Regular check-ins with healthcare providers ensure that any changes in symptoms are promptly addressed and that the treatment plan is continually optimized.

 Beyond medical management, discussing ways to improve the patient’s daily life is key. Consider lifestyle adjustments for the patient, such as adopting a healthy diet and engaging in regular physical activity, along with treatment, which can help mitigate the progression of PBC.

By having the patient be proactive and informed, they can work alongside their care team to manage PBC effectively.

This content is sponsored by Gilead Sciences.

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Timothy Watkins, MD, MSc, Vice President, Clinical Development of Inflammation Therapeutics, Gilead Sciences

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