Recently Intercept, the pharmaceutical company that makes Ocaliva (obeticholic acid), announced that they would be removing Ocaliva from the market in the United States. Ocaliva had been used as a second-line therapy treatment for patients living with primary biliary cholangitis (PBC). For patients, it has been a scary time.
Many of us had relied on Ocaliva
Not every patient responds to Ursodiol, the first-line treatment for PBC, so some patients require a second-line therapy to attempt to treat PBC. This update from Intercept leaves thousands of U.S. patients with PBC without the medication they had been using to treat their rare liver disease.
Until 2024, Ocaliva had been the only second-line medication available to patients living with PBC. We know the medication wasn’t great for all patients with PBC; however, real-world data showed that it was effective for some patients, depending on their medical status. Now those patients are losing access to the medication that had been credited with saving their lives.
We have more options now
In the last week, I’ve seen countless posts expressing fear from the patients who had been utilizing Ocaliva. It’s a scary time, I know — but now is the time we need to all band together.
Patients who had been taking Ocaliva need to talk to their providers. There are now two new options that can be utilized, elafibranor (sold under the brand name Iqirvo) and seladelpar (sold as Livdelzi).
Read more about PBC therapies
I know the idea of starting over on a new medication is scary, but it’s important to not give in to that fear. Know that you are not the only person that is having to start over with a new therapy. Reach out to support groups: You’ll find other patients who are in the same shoes and experiencing the same fear and concerns.
It’s very important to be honest with your provider while starting a new line of therapy. When starting a new medication, I recommend keeping a journal of your experience. Be sure to keep track of any new symptoms or side effects that develop, and share the information with your care team. It’s also incredibly important to make sure your provider is ordering routine liver function tests and other lab work to track how your body is responding to the new therapy.
The road of starting and following a new therapy may be long, but documenting these things and sharing the details with your team will help to ensure all the necessary steps are being taken into consideration with your care.
If one of the new medications is proving to be problematic to your health, don’t be scared to share that with your doctor. It’s possible an adjustment may need to be made, or they may need to switch you to a different medication.
The PBC community has your back
Above all, remember that we have more options available now to treat and delay the destruction caused by our disease. There is a much higher chance now of finding the right combination of therapies that work with your body. Try to remain calm and not stress yourself out more; adding additional stress is not good for the body. And please reach out to patient advocacy groups — we are all in this journey together!
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