3 in 4 people infected with this devastating virus don’t know they have it

Clyde Beard thought he was doing something nice for a family member who was struggling with cancer when he donated blood in 1992. He had no clue that a deadly disease had been attacking his own body for more than a decade.

Beard’s donation was useless to his relative, but it led to his diagnosis of hepatitis C. And it gave him the chance to fight for his life.

“I was in shock at first,” Beard recalled. “I thought it was related to AIDS, and that was the big AIDS scare, so I called the doctor, and he said, ‘No, you don’t have AIDS.’”

But hepatitis C can also be deadly. It has infected as many as 180 million people worldwide, according to the National Institutes of Health, and leads to approximately 15,000 deaths in the United States every year. Spread through infected blood or needles, the virus results in an illness that for most people becomes a chronic liver disease. It is the leading cause of cirrhosis and liver cancer, and there is no vaccine. 

“I watched him lose muscle mass. I watched him lose weight. I watched his skin change color. I watched him become very ill, weak,” said Joan Nayeri, Beard’s mother.

For Nayeri and Clyde Beard’s brother Dan Beard, this deterioration was particularly tough to watch. They were also diagnosed with hepatitis C and aren’t sure how they contracted it.

“He was having moments when he didn’t know us anymore, and that’s scary,” said Dan Beard. “Thinking back at that time, once you find out, you think you’re going to die. It’s like … ‘We’re all gonna die.’”

“There has been treatment for hepatitis C, but the treatment has not been overwhelmingly effective, No. 1,” said Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases. “And No. 2, it has had considerable toxicity."

Traditional treatment involves months or injections of interferon, which interferes with the replication of the virus and triggers immune response but has a range of common and difficult side effects — flulike symptoms, depression, anemia and psychiatric issues. The cure rate among the most severe patients, according to Fauci, is only about 40 percent.

“The side effects … are an intense chilling sensation inside your body that you can’t get rid of,” said Dan Beard. “You can’t warm up … You feel like you freeze from the inside out, so you put blankets on to try and get warm, and it doesn’t help because you’re still cold inside.”

It took several trials, but Dan Beard was able to clear the virus from this system. After his liver transplant and several painful treatments, Clyde Beard was eventually able to wipe the virus from his system too. Nayeri hasn’t been so lucky. She’s still fighting the disease. In one experimental treatment, she says, she threw up for eight straight hours. In another, her skin peeled. 

But Nayeri has reason to hope. In early December, the Food and Drug Administration approved a pill developed by the pharmaceutical company Gilead Sciences for the treatment of hepatitis C patients. Studies show that the cure rate with the new oral treatment, sofosbuvir, when used in conjunction with other medication, can be as high as 90 percent.

The drug is part of a new wave of medication called direct-acting agents. Unlike other drugs, which stimulate the immune system to fight the disease, sofosbuvir directly targets the virus to prevent it from replicating.

“I’m generally considered a conservative in my predictions for disease. I don’t talk in terms of breakthroughs or what have you, but I think that with the use of combination, direct-acting agents, that we can see the light at the end of the tunnel — that we might be able to essentially cure most of the people who have this disease,” said Fauci.

“It’s very dangerous for a scientist and a health official to give a specific time, but I would say not very much more than five years away,” he said.

But there’s one serious hurdle in realizing this timeline: As many as 3 in 4 people who are infected don’t even know it, according to the Centers for Disease Control and Prevention. Many people don’t show symptoms for years, until their livers are already damaged. The CDC recommends that baby boomers get tested before it’s too late. The test is simple, and the results arrive quickly.

“I think that we now are very close to being able to cure hepatitis C without really very toxic drugs in a considerable proportion of people,” Fauci said. “So the challenge then is, OK, now that we can do it, let’s go out and find those people that are infected and treat them.”

There is only one other thing that could temper the optimism around this new treatment. The wholesale cost of a single 28-tablet bottle of this miracle pill, according to a press release from its developer, is $28,000.