New treatment is changing hepatitis C outcomes for Alaskans

Angela* didn't know she was sick.

Sure, she didn't feel great, but she chalked it up to her lifestyle.

A blood test later confirmed that there was a medical reason for her discomfort; she had hepatitis C.

"I was just angry," Angela said. "Angry at myself. And confused, too. I didn't really have much knowledge of the disease itself. It was a long road from there."

Angela was just one of the 726 people diagnosed with hepatitis C in 2000 in Alaska.

That same year, Laurie* was diagnosed with the disease after going to a doctor in Washington because she felt lethargic.

"I didn't know anything about it," Laurie said. "I was like, 'What do I do? Take some pills?' The nurse looked at me funny, like no, you can't get rid of this, this is lifetime. They basically just gave me a pamphlet and sent me home."

Figuring she didn't have many years left, Laurie said all she did was party. Hard. Seven years later she moved to Alaska, went to the Alaska Native Medical Center and learned she now had severe cirrhosis of the liver. Doctors there told her about a new pill that was coming out to treat hepatitis C.

Angela was skeptical of the new pills -- she'd tried other treatments years before and had only been made sicker.

"My kids were like, 'Mom, you can't give up, you have to try,'" Angela said. "I did it. I waited and miracles happened."

Now, following treatment, both Laurie and Angela are hepatitis free.

Hepatitis C is a bloodborne virus; the most common bloodborne disease, according to Ginger Provo, a nurse epidemiologist and the viral hepatitis prevention coordinator for the State of Alaska. The Centers for Disease Control and Prevention report that an estimated 3.5 million people in the United States have chronic hepatitis C.

In Alaska, the number of reported hepatitis C cases has risen every year since 2000, when new cases started being reported to the state. That first year there were 726 new cases reported. In 2015, there were 1,638 new cases reported.

The cost of treatment, as well as what insurance will and won't cover, can be a barrier for some patients diagnosed with hepatitis C. Without insurance, a three-month course of the new hepatitis drugs can cost upwards of $80,000 in the U.S.

How is hepatitis C transmitted?

Provo said the disease is spread when blood from a person infected with the hepatitis C virus enters the body of someone who is not infected.

Transmission routes include mother-to-baby during childbirth, tattoos or piercings in unsterile settings and sharing personal items contaminated with infectious blood like razors or nail clippers. The disease doesn't discriminate -- health care workers and first responders like EMTs and paramedics who regularly come into contact with blood have been known to contract hepatitis C, as well as intravenous drug users who share needles. Before 1992, when widespread screening of the blood supply began in the United States, hepatitis C was also commonly spread through blood transfusion and organ transplants.

"Today, most people become infected with the hepatitis C virus by sharing needles or other equipment to inject drugs," Provo said.

Grey*, who was recently cured of the disease, said he wished more people knew what caused hepatitis C.

"I feel like a lot of people think it's more contagious than it is," Grey said. "I've had girlfriends that were worried about my saliva. It's broadcast like an STD, but it's not." Overcoming the stigma can be as daunting as overcoming the disease once was, before new treatment options were available.

A fresh start

Grey was born with the disease -- his mom contracted it before he was born. During his 1-year-old well baby exam, he tested positive for hepatitis C. During his teenage years, he tried interferon and ribavirin, which included weekly injections.

Provo said for many years that was the only treatment option available. The two medications were difficult to tolerate with low cure rates -- hovering around 50 percent.

"In 2013 the treatment landscape changed radically with all oral pills," Provo said. The cure rate, she said, is now over 95 percent.

"Hepatitis C is called the silent epidemic as most people who are infected do not have symptoms until they have advanced disease," Provo said.

Left untreated, hepatitis C will attack your liver, which can lead to long term disease, liver scarring, cancer and liver failure.

"Testing is inexpensive and widely available," Provo said. "Hepatitis [C] is curable." If you think you may have been exposed to hepatitis C, read more about testing and treatment resources here.

At age 19, Grey was declared cured after taking the oral pills.

"That was only about six months ago, so it's still pretty fresh," Grey said. "It was really surreal to be told I was cured, you know? I always thought because I had this disease, I was going to die young. It's a weird thing to think about, but now I have more time."

*To protect their privacy, patient sources in this story are identified only by their first names.

This story was sponsored by Alaska Native Tribal Health Consortium, a nonprofit Tribal health organization designed to meet the unique health needs of more than 150,000 Alaska Native and American Indian people living in Alaska.?

This article was produced by the special content department of Alaska Dispatch News in collaboration with ANTHC. Contact the editor, Jamie Gonzales, at jgonzales@alaskadispatch.com. The ADN newsroom was not involved in its production.