A liver disease you've never heard of is putting 25 million Americans' lives at risk

Adults in their 40s and 50s are getting diagnosed with Stage 3 or Stage 4 liver cirrhosis, even though they have never consumed alcohol to excess and have never felt any symptoms of the disease. What’s going on?

Liver specialists say there’s a form of hepatitis that is sneaking up on about 12 percent of the U.S. population, an estimated 25 million Americans, and they want to urge primary-care providers to send patients for testing earlier in the game.

Called nonalcoholic steatohepatitis, or NASH for short, it does not result from drug use, alcoholism, sexual contact, water contaminants or viruses. Rather this particular liver condition occurs when too much fat is stored in liver cells.

"What we’re trying to do is bring that awareness to bear," said Dr. Stephen Harrison, a liver specialist who has been working nationally to get out the word on the disease. "We’re saying, ‘Listen, this is a chronic disease. Thirty percent of the population has nonalcoholic fatty liver, and 25 percent of that population is at risk for the form of fatty liver called NASH that can progress to cirrhosis, end-stage liver disease and liver cancer.

"That’s the group we need to be getting after, but we can’t even begin to work them up if they don’t come in for an evaluation."

NASH tends to occur more often among people at high risk of heart disease because of Type 2 diabetes and obesity, and in the United States, a disproportionately high number of Latinos are being diagnosed with the disease.

“When we talk about any chronic liver disease, it’s important that people are able to recognize if it exists in themselves or if they’re at risk for it,” Harrison said. “The problem with … NASH is that it’s an asymptomatic, silent disease.”

If you get a headache, you feel the pain and you can do something about it, but patients with NASH typically don’t get that kind of warning, said Dr. Souvik Sarkar, a liver specialist at UC Davis Health in Sacramento. In addition, he said, there is no test in the primary-care provider’s arsenal that can diagnose NASH.

Esparto resident Kimberly Pearson, 54, said her liver disease had progressed to the third of four stages by the time she was diagnosed with NASH. She said Sarkar was trying to explain how serious the illness was, Pearson said, but her brain wasn’t processing it. She had never heard of nonalcoholic steatohepatitis.

“He was trying to get me to realize that this was very serious, but it didn’t really hit home until I … went on Dr. Google to figure out what it could lead to: cancer or liver failure,” Pearson said.

Sarkar and Harrison said that primary-care providers must be on the lookout for a combination of risk factors that warrant sending patients to a specialist for a noninvasive liver ultrasound known as a FibroScan. Those risk factors are: high blood pressure, high cholesterol, a diagnosis of diabetes or a family history of diabetes, a body-mass index of 30 or higher, a fatty liver or a family history of liver disease.

Pearson said that, years before she was sent to Sarkar's office to screen for liver damage, her lab work had shown she had a fatty liver. But it was not until after a diagnosis for diabetes and several years working to get that under control, she said, that she had a FibroScan and liver biopsy. It’s important, Sarkar said, for primary-care physicians to screen early for NASH.

“By educating doctors and patients, we hope to get patients diagnosed in earlier stages of the disease and not in later stages when they need liver transplantation,” said Harrison, who practices in San Antonio, Texas. “If we can do that, then the patient can somewhat manage the disease by changing their lifestyle, adopting a healthier diet and exercising.”

Harrison has been a leading voice in the NASH education program being rolled out globally. In fact, Tuesday will be the first-ever International NASH Day with events and information-sharing planned worldwide in street events and online at www.the-nash-education-program. Harrison said the initiative is aimed at educating both patients and the health-care community.

Sarkar said a patient doesn’t have to show all the risk factors to receive a NASH diagnosis. He said he’s seen one NASH patient with a BMI of 24, but the patient had high cholesterol and a fatty liver. Genetics can play a strong factor in whether someone develops NASH, Sarkar said, rather than the degree of obesity.

With many NASH patients, Sarkar said, the secret to beating the disease is weight loss, but for a patient with a BMI of 24, he said, doctors have to treat NASH by getting the cholesterol under control with medication.

So, what is fibrosis and cirrhosis of the liver?

Harrison explained: “Say tonight you have a big party. You go out in Sacramento, and you blow it out. You drink way more than you should. Your liver is not going to be happy tomorrow morning, but if you don’t drink any more, very quickly, your liver will lay down a scab. It will lay down collagen and fibrose that will allow new hepatocytes to grow. When they grow and regenerate, the liver then comes in and reabsorbs that scar tissue. And, you heal, and the liver looks brand-new.

“But here’s the problem with NASH: The fat in the liver is toxic to the liver. It’s called lipotoxicity, and that is always there. It’s there for decades. The liver never has a chance to heal, so it is constantly laying down more scab. Over 10 to 20 years, that scab develops so much that we call it cirrhosis, and it’s at that point that we can’t do much for you.”

It’s then that patients require a liver transplant in order to survive, he and Sarkar said, and a liver transplant can take years of waiting behind thousands of people in line ahead of you.

Although some patients can control or beat NASH by losing weight, Sarkar and Harrison say they have seen patients struggle to do so. Sarkar said he’s treated about 100 patients for NASH, and only two have been able to lose weight and keep it off. The doctors said it takes tremendous behavioral change.

Harrison said he tries to keep his weight loss advice simple for patients: Do not eat bread, tortillas, rice or potatoes. When he tells patients that, however, they immediately start bargaining: Does that include sweet potatoes? Is brown bread OK? What about injera, the Ethiopian bread?

Don’t bargain, Harrison said. Give up anything under the letters b-r-e-a-d, he said, and any food that fits in the other categories. He said he suggests his patients sequester themselves for seven to 10 days until they get in the habit. Once they do that, he said, they’ll feel better and the weight starts coming off and they’re better able to handle temptations.

At the same time, he said, start working out at the gym. Start with 10 minutes if that’s all you can manage, Harrison said, and try to move that up to 20 minutes the next week.

“You’ll find you can go a long time without being that hungry,” he said. “Your portion size drops. Your total caloric count drops and it augments the weight loss you’re having, and then you’re at the gym, and that augments it even more. Very quickly, fat fluxes in and out of the liver in a heartbeat. … The liver wants to regenerate. It wants to heal itself just like the skin does.”

Sarkar acknowledged that it can be as difficult for some people to give up certain foods as it is for an addict to quit drugs. That’s why he’s pleased that UC Davis Health offers its patients two different programs to help encourage behavioral changes around food.

There’s the Living Light Living Well Adult Weight Management and Lifestyle program, a yearlong plan with regular weight check-ins, education around food and exercise, and tools to help participants reach their goals. The other program, LifeSteps Weight Management, teaches participants over 12 weeks to take gradual steps toward changing their eating and physical activity. Other health providers may have similar programs.

Pearson said that weight management has not come easy for her, but she’s kept at it. She’s up by 4 o’clock five days a week to go on morning walks before work with two of her friends. Once she gets to work, she said, she and two co-workers head to workout classes several days a week. The support of friends, she said, has played a critical role in her effort to get a healthier liver.

One of the biggest challenges, she said, is getting people to understand just how vital it is to adhere to a strict diet and exercise. You look fine, and you aren’t exhibiting symptoms, and people think: It’s just one piece of cake. What’s the harm?

Harrison said that one slice of cake or bread, that one tortilla, those potatoes and rice produce a reaction in the bodies of those with NASH that is just as serious as a food allergy.

“Those four carbs, the liver is allergic to them,” he said. "It’s like, if you’re allergic to peanuts, they will kill you. Your liver’s allergic to those carbs. When you eat those carbs, you’re killing your liver.”

With diabetes, people traditionally worry about the eyes, the peripheral nerves, the kidneys, but the liver doesn’t receive the same sort of attention, Harrison said. Yet 75 percent of diabetics have fatty liver, and half of diabetics have NASH, and half of that number have advanced liver disease.

“For every 100 diabetics, 13 of them have advanced NASH and don’t know it,” he said.