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89%of people living with PBC experience PBC itch,
which can occur at any stage of the disease.*
*Studies reflect PBC itch reported in 73.5% to 89% of included patients.
Partnering with the PBC community to raise awareness of the impact of PBC itch.
PBC=primary biliary cholangitis.
Image is for illustrative purposes only and not of an actual patient.
Alfasigma is committed to improving the quality of life for people living with PBC, including the relentless itch associated with PBC
We recognize that meaningful PBC care requires education, access, and a commitment to supporting everyone on this journey.
Whether you're a patient navigating PBC, a care partner offering support, or a healthcare professional dedicated to PBC care, access to education and comprehensive resources can empower you to advocate for your best quality of life.
The impact of itch on the PBC community
89%In a survey of 633 people with PBC,
42%
reported that itch was not discussed as a key PBC symptom
at their most recent doctor’s visit.
58%
of people with PBC and clinically significant itch reported that PBC itch impacted their social lives.†
†Clinically significant itch was defined as≥7 points from a maximum of 15 on the itch domain of the PBC-40.
Nearly
3out of4
people with PBC lose sleep due to PBC itch.‡
‡Itching is often worse at night in patients with PBC and leads to sleep interference in up to 74% of PBC patients with itch.
You are not alone
Meet Lydia and Jorge
Lydia is a teacher living with PBC and PBC-related itch. She and her partner, Jorge, have been navigating her PBC journey together.
Learn about their story of resilience, positivity, and the need to communicate clearly with their HCPs about the true impact PBC has on their lives.
See how Lydia and Jorge are making the most of life with PBC
Video: Lydia and Jorge, Living with PBC
LYDIA: When my symptoms started with the PBC itch, it was random. Sometimes it would be my torso, my body, my legs, my arms. I didn't think nothing of it. But once I started hurting my body through my sleep, it was awakening for my husband and I. Okay, this is not normal.
JORGE: When the PBC itch started, I don't know what was going on. She’s got that urge to scratch and I had to really stop her because she don't want to stop it because she's asleep during the PBC itch and so, I gotta step in and soothe her down till she falls asleep again.
LYDIA: My career has been in education. At that point, I was doing 14-hour days at work and my health was deteriorating. The itching was horrible, I scratch when I'm asleep, so if I got three, four hours sleep, that was a lot. And I didn't realize how I was hurting myself by doing that. It was in the middle of the last semester of the school year when I had to stop.
JORGE: The role of the care partner is to be there for her. Not just whenever. Every day, 24-7, not just when you feel like it. So, you gotta listen to her needs. Luckily, we found a good doctor that really understood us and helped guide us through the process.
LYDIA: A good health care team looks like a medical team that makes you feel like a human being, they care. Doctors need to really, really question their patients. If they even mention itch, okay, how severe is it? When are you feeling it? What time of day is at its worse? When can you manage it? You know, to understand the body of what it’s telling you.
LYDIA: With this PBC itch, there's no heads up. There's no certain time that it’s gonna happen. It's been a tough journey, but now, I’ve accepted what I'm going through. I’m finally stepping up to the plate and to realize, okay, what can I do to make things better? Every day for patients like me, we have to take time to listen, take time to understand what our bodies are going through, and, to have faith.
A COMMITMENT THAT MATTERS
Alfasigma is committed to working with advocacy groups, like United Liver, and the entire PBC community through grassroots efforts to make a difference.
We're proud to support United Liver and respected leaders like Kristin Hatcher, Executive Deputy Director of Operations, and Gina Bartes, Executive Director, who deeply care about advancing PBC care. Their work in research, education, and patient advocacy promotes long-term social impact and accelerates progress in liver disease.
Through this partnership, we will be developing many different resources to support the PBC itch community, including those impacted by PBC itch.
Sign up below to keep informed!
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Learn about an FDA-approved treatment option for people with PBC who experience PBC itch.
Learn about a treatment option
FDA=Food and Drug Administration.