In 2016, Maia Hughes decided to begin recovery after 13 years of substance abuse. But it wasn’t only substance use disorder she needed to address. She had also tested positive for hepatitis C, a virus that spreads through blood.
“I know some people that use drugs [intravenously] that are very careful — only use clean syringes, new supplies,” Hughes says. “I didn’t. I was so far into my addiction that I didn’t really care. If I was sick, it didn’t matter. I would use whatever syringe because I didn’t want to be sick.” She believes she knows the occasion when she contracted the virus.
Hughes waited until two years into her recovery to start treatment for the virus. “I already felt enough guilt and shame around using and still struggling with a lot of self-worth and embarrassment from 13 years of all that I had done,” she explains. “So having hep C just kind of tacked on to that [was hard].”
Hughes participated in the Buncombe County Sobriety/DWI Treatment Court and then started HCV treatment in 2018 because she “figured it was the responsible thing to do to make sure I was in the clear.”
After two months of taking a pill, Harvoni, daily, she had cleared the virus from her body. “It was a supersimple process,” she recalls.
Hughes is now cured.
HCV primarily infects the liver. Symptoms, such as jaundice, sometimes don’t show for years or even decades — after which point, the liver is already damaged. (Hughes didn’t experience any symptoms.) When HCV becomes a chronic infection, it can cause liver inflammation, cirrhosis (scar tissue developing on the liver), an increased risk of developing liver cancer and liver failure, leading to death. A vaccine for the virus doesn’t exist.
HCV can be transmitted through infected blood from a mother to her baby, or via tattoos or piercings with unsterilized equipment, blood transfusions or sharing syringes for injectable drugs.
As HCV is an infectious disease linked to the opioid crisis, a patient’s current drug use can lead to stigma in health care settings, says Raymond Velazquez, director of prevention services at Western North Carolina AIDS Project. “A lot of providers in this area will not treat people for hep C while they’re using drugs,” he says. “It’s very important to treat the virus in this case — versus the person’s drug use — because that’s not why they’re there.”
WNCAP sends patients with HCV to providers who are capable of “respecting the individual as they are,” he explains, such as Dale Fell Health Center, the Asheville location of Appalachian Mountain Community Health Centers. These are federally qualified health centers that serve patients regardless of their ability to pay.
It’s a misunderstanding that individuals experiencing addiction cannot begin treatment for HCV unless they’re in recovery. In 2020, North Carolina Medicaid lifted requirements that individuals getting treatment for HCV must engage in treatment programs if they have a history of alcohol abuse or abstain from high-risk behavior. CareReach HCV bridge counselor Christine Sipe says she’s had clients who “seem to believe that you can’t do the treatment if you’re still drinking or if you’re still using, and that’s not true.”
CareReach is a nonprofit helping individuals navigate medical care, including HCV care in Buncombe County; clients are referred through the Buncombe County Department of Health and Human Services.
Another misconception is that current treatment for HCV causes unbearable side effects. Velazquez acknowledges that previous treatments “made individuals feel very sick … [it] was very hard on the body.” According to Healthline, the first treatment for HCV, called IFNa, debuted in the 1980s and led to side effects including nausea, vomiting, hair loss, depression and suicidal thoughts. A more effective treatment, RBV, arrived in the 1990s, but side effects included thyroid issues, anemia and psychosis.
The current treatments are direct-acting antivirals, and according to Healthline, they have moderate side effects, like fatigue. Velazquez says he encounters people through WNCAP’s harm reduction program who believe harsh medications are the only way to cure HCV. And Hughes believed that herself. “I thought it was going to be this whole big ordeal,” she says. “And it wasn’t at all.”
According to the Centers for Disease Control and Prevention’s Division of Viral Hepatitis, HCV is curable in over 95% of cases.
Cost of treatment
According to a 2022 report on viral hepatitis in North Carolina from the N.C. Department of Health and Human Services, the state “observed a marked increase in acute hepatitis C cases” beginning in 2009. As of 2020, North Carolina had 72,552 individuals with chronic HCV. In 2016, Buncombe County was identified as one of the “vulnerable counties” for the virus and was permitted to send HCV screenings for uninsured individuals to the state Laboratory of Public Health. Currently, all local health departments are allowed to do so.
Data indicated “some real alarming upticks in the amount of hep C-positive individuals in the state, in particular in WNC,” says CareReach Executive Director Joseph Jones. Recognizing that treatment navigation could be a barrier, in 2018, the N.C. Viral Hepatitis Program created a bridge counselor program. Buncombe welcomed a bridge counselor through CareReach that same year.
Most individuals come to CareReach already aware of their HCV diagnosis, says Sipe. But people who haven’t been tested, and are being served by CareReach for another reason, are connected to local testing locations like Planned Parenthood South Atlantic Asheville Health Center, Mountain Area Health Education Center, Western North Carolina Community Health Services Minnie Jones Clinic and WNCAP. Often testing for HIV, another blood-borne virus, is also available.
Lab work gathers more information about the individual’s genotype (the genetic makeup of their blood) and their viral load. Individuals generally also receive eight-12 weeks’ worth of the daily medication, which is tailored to their genotype.
Paying for treatment is a concern for some clients. Jones wants prospective clients to know that “lack of insurance shouldn’t be a barrier” to treatment and notes that “the vast majority” of his nonprofit’s clients are uninsured. Many of their referrals come through Homeward Bound or Julian F. Keith Alcohol and Drug Treatment Center. Sipe can connect individuals to patient assistance programs at MAHEC and Blue Ridge Health, another federally qualified health center, which “will all treat for no or low cost,” Jones says. Hughes says the costliest part of the process was a liver scan she had to undergo at a gastroenterologist prior to beginning treatment. She was able to pay in installments.
Hughes says the relief she felt after learning she was cured of the virus was “huge.”
She continues, “I don’t have to worry about [HCV] anymore or worry about it progressively getting worse and causing more significant damage in the future.”
Now Hughes focuses on her career, maintaining her recovery and sharing her story at Narcotics Anonymous meetings. She is a certified peer support specialist with Sunrise Community for Recovery and Wellness, a community recovery organization, and she was previously the medication-assisted treatment coordinator at the Buncombe County Detention Center. Last year, alongside MAT services director Sarah Gayton, she received a 2022 Dogwood Award, which is awarded by the Buncombe County Board of Commissioners to individuals who help make their communities safer.
UPDATE, MAY 25: This article has been updated with the correct spelling of Christine Sipe’s name.
One thought on “Experts tackle misunderstandings about Hep C treatment”
I can relate to this article/story because I myself had Hepatitis “C” for “16 years starting in Florida in 1999 where I lived. and I was first diagnosed. along with living with “HIV” as well and back then the treatment I was on the injections and the pills made me very sick and went on and off treatment until I moved to North Carolina in 2008 and became a patient at Asheville Gastroenterology and began treatment again with some very fine doctors especially Dr. Harland who was with me and treated me for several years until “Harvoni” came out. and I was also cured in 2014. and I’ll never forget that Dr. Harland called me on a Saturday back in 2014 and told me “I WAS CURED! that the HEP C was GONE! I was just so “stunned and “Happy knowing that this scary part of my illness was over, it wasn’t the “HIV” I was too much worried about because I was on very good anti-virials and all my labs and counts always were stable and un-detectable, it was the HEP C was worried that would kill me and that was so scary living like that, but I still have scarring on my liver. and fibrosis but all my labs and tests have been stable and look good and I go regularly every 6 months for ultrasounds. and I do not drink alcohol and I have never used drugs at all. which I feel very fortunate about that, and now living with “HIV now for almost “40” years is just mind blowing to me that I am a long term survivor of “HIV” and cured of HEP C” I feel so grateful because having and living with both the HIV and the Hepatitis C I felt was a death sentence for me but I survived! thanks to the wonderful doctors I had and still have and the medications I am on and continue to take and be treated is a ” Miracle for me! thank you…. William Raynor.