HEAR THEIR JOURNEY.

A conversation with Dr. Ilan Weisberg, PBC hepatologist, and Sheldon Ludwig, patient expert

00:00:00:10 – 00:00:36:00

Disclaimer

The Primary Biliary Chronicles Podcast is an educational program provided in collaboration with and with funding support from Gilead Sciences, Inc., including honoraria for all guest speakers. The views and opinions expressed are those of the individual speakers and do not necessarily represent Gilead's official policies, views, or opinions. This content does not constitute medical advice and does not promote or discuss any Gilead product. This podcast is hosted by me, Jeff Eggert, an employee of Gilead Sciences, Inc.

00:00:36:00 – 00:00:59:05

Dr. Weisberg

Hello, my name is Ilan Weisberg. I am a hepatologist, a liver specialist, practicing in New York City. I've been taking care of patients with chronic liver disease for over 20 years now, and I have dedicated the last several years to focusing on the management and care of the whole patient with primary biliary cholangitis.

00:00:59:05 – 00:01:09:82

Sheldon

Hi, my name is Sheldon. I’m in the clothing industry. Been in it all my life, for 35 years, and I discovered I had PBC about three years ago.

00:01:09:82 – 00:01:22:79

Jeff

Sheldon, tell us a little bit about your experience finding out about your PBC diagnosis and how did that experience go, how did it make you feel upon learning about your initial diagnosis with PBC.

00:01:22:79 – 00:02:18:53

Sheldon

I started scratching and itching and I just thought, it was summertime, maybe it was something I got. And then I was scratching a lot. So I went to my primary GP and he referred me to a hepatologist. It was about three hepatologists till I got to my primary care hepatologist. When I heard the words PBC, first of all, I had no clue what they were saying. Had no idea. I had never heard of it before. The first thing that came to my mind is, oh, is this fatal? I since learned a little different. I was bleeding all over my bed every morning, changing the sheets and doing stuff like that. I even went to a kind of doctor where sticks the little pins in it and tried that and continued on my journey to get other hepatologists until they got to what I consider an expert doctor for me.

00:02:18:53 – 00:02:33:16

Jeff

Thanks for telling us that story Sheldon, really appreciate it. And Dr. Weisberg, can you, you know, give us a little bit, after hearing Sheldon’s experience, give us a little bit about typical presentation you see of PBC patients that come into your practice? What are their experiences and what does that diagnosis work-up look like for you on the broader side?

00:02:33:16 – 00:04:05:12

Dr. Weisberg

Everything Sheldon just shared, I resonate quite extensively with. You know, patients with PBC, there's an entire spectrum of how they can present. Many patients with PBC living with feeling chronically unwell, a lot of times they look well.¹ And I think what Sheldon's shared was that he went to a series of doctors before he was ultimately diagnosed, including like, sounds like an acupuncturist, who hit the nail on the head, no pun intended. It is very typical as well, because the symptoms that patients have with PBC are not specific, you know, things like itch and fatigue,¹ which I think we're going to talk more about. They're not unique to PBC, and many other conditions can cause those symptoms. So PBC is not always the first thing that's on people's minds. And also because some of the ways we diagnose it through lab tests are often very subtle as well. But I think ultimately what I really heard from Sheldon just now is something that I hear all the time, which is that when the diagnosis is finally made, there is a whole complex emotional reaction to that. You know, there's relief because patients knew something was wrong. And finally they have an answer and a diagnosis. So they feel heard. There's fear, you know, what does this mean? Am I going to need a transplant or am I going to have this end stage liver problem? And confusion, because a lot of times they've never heard of this disease before. And if they go online and Google it, what they read might not sound like it's applying to them. So I think this experience that Sheldon shared is a very informative and typical of patients with PBC.

00:04:05:12 – 00:04:18:47

Jeff

Fantastic, thanks for that. Sheldon, can you give us a little bit more, beyond your symptoms, so what has been the biggest struggle for you living with PBC before diagnosis and after diagnosis and how have you faced those challenges?

00:04:18:47 – 00:05:55:66

Sheldon

I didn't know what was going on with me. I thought it had to do with - I've experienced some vitiligo and I had suffered from brain seizures. So they said that was the reason that I was getting the vitiligo was because of my brain and medication. I since learned that it wasn't from my brain medication, that it happened to come from the liver. And that is what I was explained, that that could be part of it, from the drugs, from the liver not functioning properly. I got very concerned when I learned that that there were so few male patients with PBC and I go, why me? How come me? What's wrong with me? I really got more worried at that point. And initially they said, we're talking medication, medication, medication. And which seems to work, from what I've learned for a lot of people, and that a transplant was rare in the total process. But I didn't know if I had to do this for the rest of my life. And if I had to do it, I had to do it. That was actually I learned to be okay with that, I didn’t like it, but I learned to be okay with that because I was in wonderful hands and I got to go home every day. So I started feeling that the symptoms, the fatigue, that really bothered me. I thought, hey, this is more than I bargained for. What's going on? And I followed my hepatologist. Finally, I had a transplant just about a one year ago today.

00:05:55:66 – 00:06:18:76

Jeff

Thanks Sheldon. Dr. Weisberg, Sheldon just gave a really emotional story about his journey and how he adhered to the treatment plan from his providers. Can you give us a little bit around what you see in your practice on some of the differences between the prescribed approach to care and what patients actually do, maybe some of the barriers that interrupt care for patients, and what does that look like on the clinical side?

00:06:18:76 – 00:08:11:52

Dr. Weisberg

I think there are a number of reasons why there are discrepancies between, you know, prescribed treatment for PBC and the real world adherence to those recommendations. What we're really speaking about is the difference between, you know, treatment success and the gaps in our optimized treatment for patients with PBC. Yeah, I mean, we do have effective therapies that are great for many patients to stabilize the liver, improve the blood work, you know, what we call biochemical response.² However, you know, we still have a gap. Well, you can improve someone's labs, but the symptoms and the burden of living with the disease persists.³ You know, there are a lot of different reasons for this. But I also think the bigger reason is that for many, many years, the focus was really just on the blood work and improving the liver biochemistries.³ And for me, this really is, I think, the biggest opportunity currently in PBC care, one that we spend quite a lot of time in our practice in Brooklyn, New York on, which is really to, I guess, to overcome this quality of care gap. Because for me, you know, I think about patients who come to see us in the practice. Excellent PBC care is not just about prescribing medications and improving blood work, but it's really about focusing on the symptoms of PBC every single time we see the patient. Asking about itching, asking about fatigue, thinking about issues of brain fog and how to support patients through that, thinking about all of the outside-the-liver effects of PBC, like making sure that we are equally focused on the bone health of our patients, because patients with PBC can develop osteoporosis and metabolic bone disease.⁴ And, you know, I think that's why we really try to focus on like a whole person approach to PBC, not just blood tests.

00:08:11:52 – 00:08:35:45

Jeff

Thank you, Dr Weisberg. Sheldon, we’re going to transition a little bit more to your personal experience again. You clearly may not fit into the typical mold of the typical PBC patient that’s been described for many years now. You’re male, you’re middle-aged. How has that presentation, for you, impacted your experience with PBC and your journey to diagnosis?

00:08:35:45 – 00:10:05:77

Sheldon

I think for me, part of my journey was again, that I didn't fit into the typical mold really made me nervous that there were so few male patients that I knew about. And, you know, and I found out from my PBC family and my doctors that, you know, no no no. Don't worry, it's not you. And everybody that I talked to that I had a liver problem, the first thing they said, well, stop drinking alcohol. I said, well, I don't drink, I truly didn't drink. And a lot of people didn't really believe me. They thought it was because it's always associated, I think, with liver disease, there's a lot of alcohol problems with it. So to get that point across and for me to understand that I didn't have a certain kind of cirrhosis of the liver and just trying not to sweat the small stuff, which is not easy. I did sweat it pretty good. I was dripping, I was dripping, when I had to fall asleep in the afternoon, and I had to, I just had to lie down. And just listen to your doctor. Well, Sheldon doesn't listen very well sometimes. And so. But I had a true listen to my body and my doctors. And I learned that since, because I still get tired post-liver transplant, I still, and I'm told that's okay.

00:10:05:77 – 00:10:25:81

Jeff

Thanks Sheldon. And Dr. Weisberg, we know that you practice in a very diverse community in New York. Can you give us a little bit on your experience working with diverse populations within your practice and the strategies you take to ensure that diversity in the PBC patient is found and discovered and diagnosed appropriately?

00:10:25:81 – 00:12:20:69

Dr. Weisberg

Really, the main thing is that earlier diagnosis is critical because the earlier we can diagnose patients with PBC, the sooner we can put them on appropriate medical therapy. A key point to convey when speaking about PBC is that it is a condition that affects a diverse number of people, and it's something that is not taught traditionally in medical school. So when I was in training, we were told that PBC was really a condition that exclusively affected middle aged Caucasian women – and that is not the case. And so that's something that our group works very hard to try to work on and dispel. To this day, most clinical trials for PBC continue to exclusively enroll only middle-aged Caucasian white women. Obviously with Sheldon on, you can hear that this is a condition that can affect men. It does. We have many patients with men. The reasons why it affects men are really unclear. We don't really understand why there's a gender bias towards women, but it's certainly more prevalent amongst women.⁵ But men absolutely can be affected.⁵ It's very important that people consider PBC in men and think about it as a potential diagnosis, because again, if you don't consider the condition, you can't diagnosis and you can't link people to effective treatment. But similarly, PBC affects all walks of life. You know, in Brooklyn, we have a very diverse patient community. And in fact, the patients with PBC don't fit the mold that we’re taught in medical school. And so we very frequently hear the story that their diagnosis was delayed because of preconceived ideas about who is at risk for this condition. But I will tell you, our patient population of PBC in Brooklyn, it is Black, Asian, Caribbean, Hispanic – Caucasian women as well, of course – but it really is a broad spectrum.

00:12:20:69 – 00:12:40:54

Jeff

Thanks Dr Weisberg. Sheldon, in thinking kind of about the future of PBC care and experiences, what are some of the things that you would hope to see in the future, for patients living with PBC in terms of support and things that help a typical patient walk through the daily challenges of living with PBC?

00:12:40:54 – 00:14:32:00

Sheldon

Positive things that I'd like to see going forward is getting the message out. Really, let's get it out there. Been fortunate to attend a couple of small conferences and trying to get the message out there, volunteer and doing, I talk for myself, creating a men's group, trying to find the men. It's okay to talk about it, that it is okay. Let's talk. And attending these conferences, finding out, learning more about PBC from the doctors, my liver surgeon and just be able to talk properly. Hey, here I am, here I am, I had PBC, I had a transplant, it's only 11 months ago. I'm having a little liver-versary party and the people that impacted my life and stuff like that are all invited. And it's just to say thank you, to get the word out there. Maybe they know somebody that's going through some kind of symptoms. And the word PBC, get it out there, look it up, talk to your doctor about it, get the message out. Have these little conferences, have a zoom meeting once every month, anything like that. I joined the PBC volunteer group trying to do things like we're doing right now on the podcast. Let's get the message out there so they understand. Because I never heard of PBC whenever. I heard of the NFL, but I never heard of PBC. And, you know, that's kind of what I'm trying to do to help the people that have it or even people that might have symptoms and don't even know. As Doctor Weisberg said, they don't even know they have it. And that's what I'm doing to try and help. And I don't care where it is in the world, where I have to go to do it, I will do it.

00:14:32:00 – 00:14:44:43

Jeff

Awesome, thanks Sheldon. Dr. Weisberg, can you give us a little bit, from your perspective, what guidelines or updates do you think would be most beneficial in the near future for PBC patients in terms of clinical practice?

00:14:44:43 – 00:15:57:84

Dr. Weisberg

The care of patients with PBC has really changed quite substantially in the last years and decades, but I still think there's a lot of work to be done. And when I think about my hopes for the future trajectory of PBC care, I obviously want wonderful, effective therapies to stabilize the disease. I want to improve our focus on early detection and linking patients to effective therapy earlier. But I think for me, you know, I think really we need to try to think about PBC – and I know I've said this a few times, but it's true – really as a whole person-focused condition, really multidisciplinary care that focuses not just on the liver specifically, but the whole individual who's living with this. You know, patients who are living along with this disease, and it affects so many different things. I think it's about the mental health aspects.⁶ And so, you know, when I see patients with PBC, again, we focus on a lot of these patient reported symptoms of itch and fatigue. But that's not universal. In fact, the data shows us that most patients with PBC don't get asked about these symptoms, let alone have them managed.^7,8 I want patients to have a real clear-cut understanding of their prognosis. I want patients also to feel like we're caring for the whole patient, and not just the liver specific health.

00:15:57:84 – 00:17:19:00

Dr. Weisberg

I think this podcast is really unique that we get to both share our perspectives and learn from each other. You mentioned that it's about learning and understanding the disease and the condition, but I also think a big part of it is about feeling heard. I think taking time, sitting down, listening to your patients, understanding what it feels like to live and experience PBC, it's something that, you know, doctors don't know. Only the patients who live with PBC truly know. So I think making sure patients are able to share those symptoms and talk about what the difficulties and struggles are with PBC and letting your patients know that they're being heard has such a therapeutic benefit, not just in the relationship building, but also in the actual care. I guess, if there's one final takeaway from this podcast that I would like to get across and I try to get across all the time, is that patients with PBC, our goal is not just to help people live longer, it's to help them live well. And that's why it's so critical that we have early diagnosis. The symptoms of PBC absolutely matter. We need to give as much attention to symptoms and managing symptoms. Quality of life matters; we have to give as much importance to that as well. And again, patients with PBC need to be heard. And that's something that needs to happen more and more.

References

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2. Jallouli et al. Annals of Gastroenterology. 2025;38(2):1–12.
3. Levy C, Bowlus CL. Hepatology. 2025;82:895–910.
4. Trivedi HD et al. Clinical and Experimental Gastroenterology. 2020;13:17–24.
5. Trivella J et al. Hepatology Communications. 2023;7:e0179.
6. Sivakumar T and Kowdley KV. Hepatic Medicine: Evidence and Research. 2021;13:83–92.
7. Abbas N et al. JHEP Reports. 2024;6:100931.
8. Mayo MJ et al. Digestive Diseases and Sciences. 2022;68:995–1005.