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Dr. Kowdley:
Hi, this is CME on ReachMD, and I’m Dr. Kris Kowdley. Here with me today is Dr. Atoosa Rabiee.

Dr. Rabiee, what do providers need to know about the changing phenotype of PBC, or primary biliary cholangitis?

Dr. Rabiee:
Thank you, Kris. We know that PBC affects people of all sexes, races, and ethnicities. Although our earlier reports from case-finding studies showed a female to male ratio of 10:1, we know based on our modern literature that, although PBC remains a female-predominant disease, the ratio is more like 4-6:1. PBC in male patients is diagnosed usually at an older age. Once the diagnosis is done, the disease is usually more advanced. It has also been associated with lower biochemical response to DCA [deoxycholic acid] and greater progression to cirrhosis.

As far as ethnicity goes, while non-Hispanic White patients still are disproportionately diagnosed, the incidence and prevalence of PBC in racial minorities are not insignificant. The available US data shows a lower, but steady increase in incidence rate and prevalence among Black and Asian American patients. And we should also note that accurate racial epidemiological estimates are affected by healthcare disparities and lack of disease recognition by providers.

Now the incidence and prevalence of the disease on a global level is estimated to be 1.7 and 14.6 per 100,000 persons. They vary significantly according to the strategy used and geographical location. However, we know that a prevalence in all 3 regions – North America, Europe, and Asia – has been rising steadily, although at a faster pace in North America relative to Europe. The 12-year prevalence study from FOLD [Fibrotic Liver Disease] Consortium showed that the PBC prevalence in the United States increased by over 72% among women, and over 114% in men during their study period. Although this is probably multifactorial – earlier recognition of the disease, efficacy of UDCA [ursodeoxycholic acid] to prevent morbidity and mortality – however, we can’t really ignore the fact that clearly there is a trend towards increased prevalence of the disease.

Dr. Kowdley:
The key takeaway regarding epidemiology for our audience is that, although historically PBC has been considered a disease that affects Caucasian women in, quote/unquote, middle age, we now know that every ethnic and racial group can be affected, and men can also be affected, although at a lower proportion, maybe 10% of patients. And so this may lead to later diagnosis, so heightened awareness is critical especially because patients who present with younger age at diagnosis tend to have more aggressive disease and, certainly, some of the underrepresented minority populations may have later diagnosis that might lead to less effective therapies.

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