Coping with Coinfection

For hepatitis C virus patients coinfected with HIV, the everyday challenges of managing their condition are amplified.
Keziah Gibbons, 32, was hardly shocked when she learned she was infected with the hepatitis C virus (HCV) in 2005. However, when the intravenous (IV) drug user learned just a few short years later that she contracted HIV at some point in 2007, she was truly thrown for a loop.

“For my community, HCV was a norm—everybody had it, and I saw people living with it. So that wasn’t that big a deal. When I got HIV, it was a huge shock,” Gibbons said.

The Lincoln, United Kingdom–native’s journey through treatment saw additional concerns when she became pregnant in 2009, at which point she needed medication to prevent the in utero spread of the diseases to her daughter, Lili. Gibbons found herself overwhelmed by her condition and the side effects from her medication, all while trying to raise a newborn. She worried that without being able to breast-feed, would she bond with her daughter? Furthermore, with HCV treatment lasting for more than 24 weeks, how would she find the energy to care for herself and her daughter?

“The nursing team were only interested in removing the virus by any means possible, and were less interested in my experience. They didn’t warn me about the side effects. But the side effects were awful, severely debilitating,” Gibbons said. “I became very anemic and was permanently weak. So weak, in fact, that I had to get a mobility scooter to get out and about in and ask for help getting to the bathroom.”

Steven Copeland, 54, of the Beacon Hill area of Boston, said his struggle with coinfection came while he was overcoming substance addiction.

“I struggled with drug abuse at a very young age, and at 34 first attempted the recovery process,” he said.

It was his diagnosis with HIV/HCV coinfection in 1994, and the birth of his son, that motivated him to make major lifestyle changes.

“When this happened to me in 1994, it was devastating. I was trying to stay clean, and then you add the stressors of hepatitis C and HIV. It was a great struggle,” Copeland said.

He turned to a 12-step program to find encouragement and motivation to go on, as he coped with the mental impact and physical side effects of HCV treatment while trying to kick a drug habit.

“It was brutal,” Copeland said. “But I focused on working on myself, changing a cycle of negative thinking, accepted personal responsibilities, and it gave me hope.”

Copeland, who never finished high school, earned his high school equivalency diploma and went on to achieve a college degree in turf management while in treatment. He also linked up with advocacy organizations and began to volunteer. As his HCV-related liver disease progressed and the likelihood of needing a liver transplant loomed, he was eventually approved for treatment with Sovaldi. After just three weeks on the therapy, doctors told him his HCV was undetectable.

“I have so much more energy,” Copeland noted. “I felt immediately better—more upbeat, more energy.”

Copeland said this outcome didn’t always seem like a possibility. The struggle with coinfection, he said, comes in many forms: side effects, stigma, social impact and medication adherence.

Treating a Coinfection

According to the U.S. Centers for Disease Control and Prevention, in the United States about 25 percent of people living with HIV are coinfected with HCV. In the population of patients with HIV who use IV drugs, about 80 percent are coinfected with HCV. The first question doctors may face in how to proceed with treatment is which condition to treat and how drugs will interact with each other, according to Amy Hampton, a hepatitis program director for Curant Health. The firm partners with health care providers and advocacy organizations to improve the lives of patients living with HIV and HCV by providing education and access to care and medications.

“Most often, providers prefer to get HIV under control before starting a patient on therapy for hepatitis C, because HIV is a more immediate threat to a patient’s health, especially if it progresses to AIDS,” Hampton said. “As soon as HIV is under control, meaning undetectable viral loads at less than 50 copies, hepatitis C treatment should begin.”

The liver-related health problems that progress from HCV could come faster among people with HIV compared with those who do not have HIV, said Dr. Rajender Reddy, director of hepatology at the Hospital of the University of Pennsylvania, where he is also medical director of liver transplantation. But as Reddy and other professionals prescribe newer treatments, the cure rates and shortened length of treatment for HCV have changed patients’ lives.

“My thought on seeing the results was ‘wow.’ Nothing short of wow,” he said.

Tracy Swan is the hepatitis/HIV project director at Treatment Action Group, an independent AIDS research and policy think tank. In addition to her work with the group, Swan also works to monitor clinical trial design, as well as to establish regulatory guidance for HCV drug development. She said that over the years, treatments have become more effective, with fewer side effects than those experienced on the older standard HCV therapy.

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