Glenna McCarthy was cured of hepatitis C the hard way, but now, she’s made it her mission to help others take advantage of the new easier-to-take treatments.
McCarthy, 50, found out in 1990 that she had contracted HIV from a boyfriend. Feeling as though she were “damaged goods,” she went on a “self-destruct mission” that led to injection drug use, a stint in prison and hepatitis C virus (HCV) infection.
While she was in jail in 1999, she was informed that she had AIDS and HCV.
“I had never heard of hepatitis C, and I was not ready to even think about it,” she recalls. “I was trying to be smug and say, ‘Who cares?’ I really had nothing to lose at that point. But when you realize you’re going to prison and you might die in prison, it snaps you out of it.”
McCarthy started HIV treatment for the first time in jail and today maintains an undetectable HIV viral load.
McCarthy says she didn’t know how to adapt to life out of prison when she got out in 2004. “I tried everything. I tried going to school, taking martial arts, you name it. I was trying to find relationships with people who were as damaged as me so I wouldn’t be judged.”
Several years later, McCarthy got arrested again and got sent back to prison for a shorter period. But this time when she came home, she found the Crime Victims Treatment Center in Harlem, which helps people affected by violence.
“I went in there thinking I wouldn’t be worthy of them caring about me, but when they did, it made a big difference,” McCarthy says. “I started learning about posttraumatic stress disorder, and it made sense—it just helped me get some clarity.”
McCarthy also started volunteering at an animal shelter in Spanish Harlem, working with abused and neglected animals, especially pit bulls. “I related to them because nobody likes them and they’ve been discarded,” she says. “I thought they needed love.”
Around 2012, McCarthy started seeing a gastrointestinal specialist for stomach problems and learned that she had moderate liver disease and abnormal liver enzyme tests, so she decided to start hepatitis C treatment.
“I had been clean for a few years, and so they took a chance,” she says. “I felt so damaged by what I had done with my life. I just felt if I could do a treatment to beat something, I was going to do it.”
At first, McCarthy couldn’t get her treatment covered by insurance, but in the end, after some roadblocks, Medicaid paid for it.
Because she was coinfected with HIV, McCarthy underwent treatment with pegylated interferon (Pegasys) injections and ribavirin for a year. That old combination cured about half of people with HCV genotype 1 on the first try. McCarthy was one of the lucky ones—but it wasn’t easy.
“It made me hallucinate and get paranoid. Every time there was a garbage bag on the street between cars, I thought there was a dead cat or a dead dog in it,” McCarthy recalls. “I hate to say it, but one thing that helped was that it made me lose weight. That was the only ‘perk.’ In some respects, I looked like crap because my hair thinned out, and I was not a happy camper.
“Being an addict, I was used to instant gratification, and I was not used to investing in myself,” she continued. “Why shoot up something that makes me feel like shit instead of shooting up something for a false euphoria? But I knew I had to change everything.”
Her work with animals also helped her get through the treatment, she says.
“That was my passion while I was on the hepatitis C treatment,” she recalls. “I wanted to go because it gave me a purpose and helped me get through my aches and pains.”
McCarthy was part of the last group of patients to use interferon-based therapy. The first direct-acting antivirals that could be used in interferon-free combos were approved in late 2013, about the time she finished treatment.
“They told me there were new medications coming out,” she says. “But if I want to fight something, I want to fight it now.”
“If I’d waited a year, I would have had it much easier. I would have been able to take the pills,” she adds. “I guess in a way I didn’t trust the system. I didn’t feel like trying anything new. Let someone else be the guinea pig and figure out what’s wrong with it.”
McCarthy went back to school for an associate’s degree in human services and a bachelor’s in sociology at Hunter College. She is planning to start grad school in the fall for a master’s in social work.
During that time, she did harm reduction outreach, including needle exchange, and worked as a peer educator for Harlem United. But personally, she says, “I like abstinence better than harm reduction. I think harm reduction is good, but I’d rather see people get clean.”
McCarthy currently works as a hepatitis C navigator at Promesa in the Bronx, which provides inpatient and community-based drug treatment and rehabilitation services.
“I do outreach and facilitate support groups. Since the linkage-to-care person quit, I do her job as well. I do interactions with pharmacies, deal with doctors, make sure people get their medications and escort them to groups,” she says.
Asked what advice she has for others, McCarthy offers: “Learn to invest in yourself, and don’t be fooled by instant gratification.”