Norman Sussman, MD: Patients who don’t recognize their disease—that is, they have subclinical advanced fibrosis—really don’t see a problem until it’s too late. They may have other health problems, like diabetes or high blood pressure. They frequently don’t feel very well, so it’s difficult to put an exact number on that. Once they develop decompensated cirrhosis, their life is completely different.

It is a tremendous burden on the patient and the family. Frequently, those people can’t work. They are frequently hospitalized. The disease is very expensive. There may be repeated hospitalizations. Sometimes, they can’t be left alone. They have to be put into a home or someone has to stay at home with them all the time to monitor them. Once you reach that point, the condition is very difficult to manage. It is also a huge stress on the patient and the family.

The disease burden of cirrhosis is the same irrespective of how patients got there—whether it’s alcohol, nonalcoholic fatty liver disease, or viral hepatitis. All people with end-stage liver disease have the same problems. The disease burden is felt mostly by the family and the caregivers. Patients become incapacitated. Frequently, they can’t drive. They can’t work. They may need constant monitoring.

The family has to rally around the patient. They frequently can’t work. Many times, their health insurance is tied to their work. If someone else in the family is not carrying insurance, those people may end up uninsured. Finances become extremely difficult because they’re not working, they frequently require expensive medication, and they frequently require hospitalizations. In some cases, it completely unravels the family.

Sometimes the patient has some degree of confusion that can stretch anywhere from very mild to very severe. They don’t feel well. They feel terrible, and many times they feel very guilty about the pressure they’re putting on their families. They know that they can’t work. Some of them try but fail, so then they sort of sit. They get into this mind-set of constant attempting and failing. This can be very difficult for the patient, which is an important reason why we like to intervene early. Once they reach that point, they have more or less reached the point of no return and may not be able to recover without getting a liver transplant.

Viviana Figueroa Diaz, MD: Once you develop advanced fibrosis, you tend to follow up more often with your doctor. That can interfere with your work life, because that means more days off from work. That’s why prevention—and also work on the prevention of progression—is very important. It doesn’t tend to limit physically, too much, in terms of just talking about NASH [nonalcoholic steatohepatitis], but when you look at the patient overall, in regard to metabolic syndrome and all the risk factors for NASH with advanced fibrosis, it does tend to take a toll on your physical activity—what you could do—and it could also result in some fatigue.

Fatigue is 1 of the most common things I hear in the office. It’s very interesting, because once people are actually determined and commit to change their lifestyle, and they actually lose weight, 1 of the first things they tell me after a few months of changes is, “Doctor, I have all this energy.” I know they’re in this inflammatory state, as we say, and that can have a toll on your energy levels.

As the disease continues to progress, the economic burden increases, especially when advanced fibrosis advances to what we call cirrhosis. That means that you need to do more testing more frequently, including screening for liver cancer every 6 months. Also, if the patient eventually develops some signs of liver failure, there also tend to be more visits to the hospital and more testing. Once you have cirrhosis, you need to have other important invasive testing done, including endoscopy. All that has an impact on the cost of the disease.

Mazen Noureddin, MD: As mentioned earlier, nonalcoholic fatty liver disease, especially with advanced fibrosis, has been shown to be associated with a huge cost burden—more hospital admissions, more complications such as ascites, hepatic encephalopathy, as well as variceal bleeding—when you get to cirrhosis. And the burden is increasing. Liver transplantation is on the rise. The cost of hepatocellular carcinoma is very high. Patient admission rates as well as being discharged to nursing facilities all have been a huge burden. There are multiple publications from the last 3 years that have shown the high cost of nonalcoholic fatty liver disease and NASH cirrhosis, and it’s in the billions of dollars.