Overcoming Barriers to Liver Cancer Care: Breaking the Stigma and Taking Charge

Lisa Hatfield:

Dr. Villanueva, research shows that underrepresented communities often face delays in liver cancer diagnosis and treatment. What are the biggest barriers you see, and how can patients and families work to overcome them?

Dr. Augusto Villanueva:

So that’s a very good question, and let me give you some numbers. So, on average, out of 100 patients with cirrhosis that should be enrolled in a surveillance program for the early detection of liver cancer, only 25 of them are actually enrolled in a surveillance program. So, the majority of patients that should be in an early detection program, they’re not on an early detection program, and this is more pronounced, more evident in underrepresented populations.

So, there are a number of reasons for that. One of the reasons is that the patient has cirrhosis, and they don’t know they have cirrhosis. And this is not uncommon, because cirrhosis generally doesn’t cause any specific symptoms unless the disease is very advanced. The cirrhosis is very advanced, and there’s a lot of significant liver dysfunction. So when the eyes become yellow, when you have jaundice, when you start retaining fluids, that’s when the disease is very advanced. But at early stages, when you still have risk of developing liver cancer, you may not have symptoms. To this day, we’re still diagnosing patients at the same time with everything, with cirrhosis and with liver cancer, with them knowing nothing about any of these two things.

So, the first point that I would like to make is in terms of delaying cancer diagnosis, the best thing is to know your risk, and if you have cirrhosis, make sure that you’re enrolled in a surveillance program for the early detection of liver cancer.

What’s another reason for delaying diagnosis? As you know, there is a lot of stigma around liver disease and liver cancer. And there is little that we can do about it beyond talking about it. So, when we talk about liver cirrhosis, people will definitely think about alcohol use and drug abuse and addiction. People don’t like that, don’t like to talk about that, and that’s a major limitation in our field, because we need to talk about that. We need to make sure that people get tested for hepatitis B, for hepatitis C, so we know about their risk for developing liver disease and liver cancer. So I think that’s another barrier that we face, stigma around liver disease that prevents people from talking about it, from getting tested, and knowing which is the actual risk of developing liver cancer.

So, I would say that my [ACT]IVATION tip for making sure that you get the diagnosis for liver cancer as soon as possible, before the symptoms emerge, because when the symptoms are there, it’s very likely that the disease is quite advanced, so to prevent that, get tested. Everybody, get tested for hepatitis B, hepatitis C, and eventually, for advanced liver disease or cirrhosis. And it’s very easy, it’s just blood work. Your primary care physician will do that, very straightforward, at least once in your lifetime, get tested for this.

Lisa Hatfield:

Okay, thank you. One quick follow-up question to that comment. Do we need to request that from our primary care physician, or is that something that is automatically offered once in our lifetime to get tested for those?

Dr. Augusto Villanueva:

So, the CDC recommends hepatitis B and C testing for every adult, and I think most of the primary care physicians do that, or offer that on a regular basis. But I think it’s relatively easy next time you see your primary care physician: “I’ve heard about this hepatitis, do you mind just getting me tested for hepatitis B and hepatitis C?” And that’s very easy and relatively straightforward.

Lisa Hatfield:

Dr. Villanueva, how do cultural or socioeconomic factors influence how your liver cancer patients engage with treatment decisions?

Dr. Augusto Villanueva:

I think the main cultural barrier is the stigma around liver disease. So, for instance, last week, I had a patient that was diagnosed with liver cancer in the context of cirrhosis due to fatty liver. So when I told the patient about the diagnosis of the liver cancer and the cirrhosis, she got upset, because she said, “Cirrhosis? I’ve never drank alcohol in my entire life.” And you can feel all the baggage and the load, the psychological load that that diagnosis brought to her, even more than the cancer diagnosis.

So, I think that culturally, the association of liver disease to addiction is very damaging. It’s still very present, particularly in certain cultures. I think it’s more perceived as damaging. That will prevent patients from talking about it, recommending family members to get tested. It becomes a very private disease. So I think those are the main barriers that I see. Still a lot of stigma around liver disease.

And every time I get asked this question, I say I think the best way to improve that is to talk about it, so people get tested. And then hopefully address this issue that it’s a disease like any other disease. Addiction is a disease like any other. You need treatment, you need community, you need help, you need support, you don’t need to be stigmatized. Because if you have a disease, you need to be treated and taken care of.

To me, that’s very important for the patients to understand, for the family to understand. It’s teamwork. And culturally, that’s a major barrier.

So, my activation tip for this question is that: don’t allow stigma to get in the way of you getting the best care for your liver disease and your liver cancer. Talk about it, get tested, and make sure that it’s not something that is preventing you from getting the best care that you deserve.

Lisa Hatfield:

Thank you. I like that. I know that you’d mentioned the stigma surrounding that, and I know that’s a stigma with lung cancer also. So it’s really important, I think, for patients to hear that from you, an expert, to get tested anyway, and to talk about it openly with their doctors so they get the best treatment. So thanks for bringing that up.

Dr. Augusto Villanueva:

Now, if you think about it, there are big foundations for most tumor types. You have a large pancreatic cancer foundation, you have a huge breast cancer foundation. There is a very tiny liver cancer foundation. And I wonder if one of the reasons for that is we don’t have big champions of liver cancer, people that go out there and talk about liver cancer, because there may be some background cirrhosis and some past addiction, and nobody wants to go public about that, talk about it openly as with others. So I think it has been a limitation in the field.