One in three patients with PBC doesn’t get treatment, study finds

Among patients who did start first-line treatment, almost 60% stopped taking it and never started a second-line therapy.

Patients with primary biliary cholangitis (PBC) may not be receiving timely or effective treatment with medications for PBC, according to a recent study published in the Journal of Comparative Effectiveness Research.

The study looked at 1,748 people who had just been diagnosed with PBC, 1,659 people who were receiving their first PBC treatment (usually ursodeoxycholic acid, or UDCA) and 181 people who were receiving their second type of treatment after the first one was unsucessful. The patients in the study were from the U.S., had an average age of 52.7–54.5 and were mostly women.

The researchers found that many people never started treatment: About one-third of newly diagnosed patients did not start treatment for PBC in the first year and a half after they were diagnosed (34.8%).

Patients who did start first-line treatment began their first treatment about one month after diagnosis. On average, they stayed on that first treatment for almost five years. But almost 60% of patients who stopped taking their first-line treatment never started a second-line therapy. The authors noted that this put them at risk of PBC progressing.

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Among patients who started a second-line treatment, there was an average gap of three months between stopping the first-line treatment and starting the second-line one. Once patients started their second treatment, they stayed on it for about four years on average before stopping it.

About one in five patients (19%) who didn’t receive treatment had a negative health complication; a similar number of patients on a second-line treatment developed complications. Most often, this meant their disease got worse and led to severe liver scarring, known as cirrhosis. These complications were somewhat less common in people on first-line treatment (14%).

“Results of this US population-based study demonstrate a potential unmet need for early intervention and effective treatment options for patients with PBC, as one in three patients with PBC remain untreated years after diagnosis,” the researchers said.

Read more about PBC treatment: “How your pharmacist can help you manage a new medication for PBC”