Rosie Boyce sits on the couch at The Sanctuary in Lewiston on Sept. 26. Andree Kehn/Sun Journal file

LEWISTON — Looking back, Rosie Boyce does not recall experiencing many symptoms from her hepatitis C infections. With her body clearing it once on its own in 2009, she was surprised to learn she had become infected again years later when she was tested in 2015.

She remembers feeling overall fatigue and losing chunks of hair on her head, but not many other symptoms, she said.

The advocate and peer mentor for people with substance use issues became sober in 2008 after four years of active intravenous drug use, she said. She became infected with the virus during that time — like many others who have contracted it.

Her first infection resulted in no signs of damage to her liver, but doctors started seeing signs of damage with the second infection — though nothing major, she said. She was fortunate to take the treatment that essentially cures humans of hepatitis C before the virus could wreak significant havoc on her body.

“The doctor at the virology clinic was pretty adamant that it was a really easy course of treatment,” Boyce said. “Twelve weeks, one pill a day, zero side effects, which is pretty amazing, considering how intense the treatments were just a few years before that. And I have been hep C free in all forms, all genotypes, since then.”

Hepatitis C predominantly impacts the liver, causing liver damage, liver failure, liver cancer and premature death, with about 80% of people infected developing chronic or lifelong illnesses, according to information in a 2016 U.S. Centers for Disease Control and Prevention fact sheet.

It can be difficult for people to know that they have contracted the virus because many people do not experience any symptoms early on, according to infectious disease specialist Dr. Michael Madaio. The lack of obvious symptoms has led to hepatitis C being called a silent killer, with some people going years without symptoms.

“People don’t usually have any symptoms,” Madaio said. “It enters the bloodstream and it goes to the liver, and it kind of sets up shop in the liver.”

There was much concern and attention given to HIV and AIDS in the 1980s, but there was little attention given to another virus that went largely unnamed until 1989, according to a report published on the National Library of Medicine website. Hepatitis C now has a higher death rate than HIV.

The national death rate in 2022 for hepatitis C was 2.89 people per 100,000 population, and the national death rate for HIV in that same year was 1.3 people per 100,000 population, according to information released by the CDC.

However, many people can be co-infected with both HIV and hepatitis C. Among intravenous drug users with HIV, more than half of them also have hepatitis C, according to information on the U.S. Department of Health and Human Services website.

Before the virus was identified, hepatitis C was sometimes passed through blood transfusions, until the 1980s, when blood donations started to be routinely tested for hepatitis. Now the most common mode of infection comes from intravenous drug use, according to Madaio.

Before a cure, there were few treatment options and people tended to cycle in and out of the hospital with severe illnesses, even dying, he said.

“For a long time there was no way to treat or cure hepatitis C and when someone was diagnosed with it we just kind of told them, ‘Well, we’ll keep an eye on your liver and hope it doesn’t get to the point where it causes you cirrhosis,’” he said.

Complicated factors in humans and the virus prevent an effective vaccine from being developed, and early treatments, primarily Interferon, were not always effective and debilitated people’s health while in treatment, according to information on the International Federation of Pharmaceutical Manufacturers and Associates website.

Boyce knew some people who took Interferon about two decades ago, and remembers them having to take significant amounts of time off because it was such a painful, monthslong treatment, she said. It put her off the idea of taking the treatment herself.

But in 2011, direct-acting antiviral medications became available and changed hepatitis C treatment entirely, according to IFPMA’s website. These medications cure more than 90% of people in eight to 12 weeks and do not have the debilitating side effects of previous treatments.

Patients will get an initial “workup” to see how much damage, if any, the virus has caused in a person’s body, but the treatment is available to anyone — even those engaging in high-risk behaviors, Madaio said. The treatment does not reverse the damage the virus already caused, so doctors still need to monitor patients after they have been treated.

However, hepatitis C remains a major health issue among intravenous drug users, with many factors going into the lack of testing and treatment for the virus among people in this community, he said. Some of those complications include a lack of transportation and life circumstances.

The treatment can be expensive, but Madaio’s office usually finds ways to help people get coverage for it, he said. MaineCare, Medicare and most commercial insurances usually cover the treatment.

Boyce thinks the primary reason why people who inject drugs do not seek testing and treatment is because of stigma, she said. Though the cure has been available for more than a decade, she has not noticed many of the people she works with locally prioritizing testing for hepatitis C.

Maine had the highest rate of new acute hepatitis C infections in the nation from 2020-22, the most recent years in which data is available, according to the CDC.

When people are in active drug use, many are not prioritizing their health and cannot always identify side effects as being caused by something other than their drug use, Boyce said. Having more mobile testing methods would help with getting people to do it. Madaio also agrees that more testing needs to be available in the field.

“If I can test you where we are, where we’re meeting right now if I can meet you where you’re at, literally, and test you with a finger prick, let you know that you’re … reactive then … I’m breaking down those barriers that are in place, you know, one step at a time, or helping to,” Boyce said.

Madaio cautions that people can become infected with hepatitis C again even after they have taken the treatment. It is important that people engaging in high-risk behaviors continue to test for the virus, as another round of treatment can clear the infection again, he said.

“Someone can always get hepatitis C again,” he said. “That would mainly be if they continue to have the risk factor, such as if they’re continuing to inject drugs and particularly share needles when they inject drugs, or, you know, potentially have sexual activity with someone who is also positive that is, not on treatment, and so on and so forth.”

Madaio said hepatitis C demonstrates the benefits of harm reduction programs, because giving people who use intravenous drugs clean needles can reduce infection and reinfection, he said.

Reinfection is not common, in part because of safe needle programs, better education and eliminating or reducing at-risk behavior, he said.

“Even when we treat people with active injection drug use it’s very uncommon to be treating people like three or four or five or six, or you know, whatever times — that just doesn’t really happen,” he said. “And so the fear is that oh, well, if we treat people that aren’t ‘sober’ they’re just going to end up repeatedly being treated and cost a lot of money, and that just hasn’t really played out.”

It always surprises Boyce how hateful people can be toward those who use intravenous drugs, she said, but through her work, she knows how resilient they are. Instead, they should be treated with respect.

Drug use set aside, they are people who sometimes have suffered trauma but they are still someone’s family member and have incredible stories about how they got to where they are in life, she said.

“They are people with value,” she said. “If you take five minutes to just talk to them, they are people that are seeded with incredible hope.”

The CDC recommends that everyone should be tested at least once in their lifetime for hepatitis C, regardless of their risk factors. To learn more about hepatitis C testing and treatment, fill out a care form through the state website.