HIV and HCV: 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.

“Interferon and ribavirin did not work very well for HIV-positive people and had lots of side effects. Now, that’s changed. People have a great chance of being cured,” Swan said. “Treatment is much better now than it was a few years ago. Coinfected people are much more likely to be cured with the new HCV drugs than interferon and ribavirin.”

Understanding Adherence

Doctors must continue to monitor coinfected patients, not just for interactions between their medications, but also to take stock of their alcohol and substance abuse and over-the-counter drug use, in order to manage their side effects and minimize drug interaction.

“It’s important for patients to understand exactly how to take their medications and which disease each medication is treating,” Hampton said.

A patient may see more than one doctor, such as a specialist in infectious disease and a hepatologist. While this could lead to more specialized care, in Gibbons’ case, she found herself having to connect the dots between what each health care provider said.

“There seemed to be some inability for the two teams to communicate, and so I had to learn a lot of my information and bear messages between the two teams,” Gibbons said.

Dr. Amesh A. Adalja is a board-certified infectious disease physician at the University of Pittsburgh Medical Center. Adalja noted that HCV treatments in years past often included 48 weeks of pill cocktails with side effects that led to severe anemia and lethargy in patients.

“There were severe side effects, and for 48 weeks, a patient would have to deal with the side effects—that’s almost a year,” he said.

Newer HCV treatments, in comparison, could require only a 12-week program, or even less, he added.

“It’s much less daunting to face, it’s a much easier sell, when side effects are [lessened] and the program is shorter,” Adalja said. “They can see a light at the end of the tunnel.”

The recently approved drugs are not just shorter programs, they cause fewer concerns when coupled with HIV treatment, Hampton added.

“The beauty of these new hepatitis C drugs, like Sovaldi and Harvoni, is that there are far fewer interactions between those products and HIV treatments, including commonly prescribed Atripla,” Hampton said. “Coinfected patients are now able to start hepatitis C treatment without discontinuing HIV treatment. Difficulties in adherence are fewer than ever, but perfect adherence has never been more important.”

Dutifully taking medications as prescribed is essential, whether treatment is 12 weeks or more than a year. Hampton said adherence becomes more important due to the cost of new medications, often $1,000 a pill. Swann believes that coinfected patients have better success with adherence, and thus have higher cure rates.

“HIV-positive people have experience with adherence, and in some HCV clinical trials, cure rates have been higher among coinfected people than people with HCV alone,” she said. “This is probably because of great adherence. HIV care has built in education about and support for adherence to antiretroviral therapy. People know why it is important to take medicines as prescribed, instead of simply being told to take it.”

Simon Farnworth, a nurse practitioner for HIV and HCV coinfection at Chelsea and Westminster Hospital in London, works at Kobler Clinic, one of the largest HIV treatment centers in Europe. His role involves diagnosing, treating, and supporting patients with HCV.

“The main issue with the new meds is drug—drug interactions, and we often have to change a patient’s HIV meds in order to minimize these,” Farnworth said. “This can be somewhat disruptive, and patients often worry that the HIV meds will stop working, particularly if they have been stable on them for many years.”

Keeping Hope Alive

Gibbons made dietary changes and practiced yoga, Reiki and other healthy habits to counter the weakened immune system she was told would be a result of coinfection. In 2012, she was able to clear HCV following a treatment regimen with interferon and ribavirin.

“Some of my friends’ deaths were contributed to by a weakened immune system. People kept reassuring me that it wasn’t a death sentence. So why were they using that phrase, I wondered,” Gibbons said.

Besides the physical impact, coinfection affects mental health and mood, which, in turn, affects relationships, Farnworth said.

“The main ways that I see patients’ lives impacted, particularly with interferon regimes, is the level of tiredness and lethargy they experience,” he noted. “This and other side effects, like mood changes, often result in strained relationships with family, friends and partners.”

Reddy said the stigma of the disease and its associations with IV drug use or unprotected sex can often create depressed feelings for the patient, who also see changes in how others treat them. Patients must use protective barriers, such as condoms, during sexual activity and be mindful of other ways the diseases spread, such as through shared needles or razors. Copeland said that disclosing to a potential partner will impact their relationship.

“Disclosure is huge,” he said. “Some can accept you, others can’t. I’ve been so fortunate to have found people who accept me.”

Surprisingly, Farnworth noted his patients found the stigma with HCV to be even greater than that of HIV.

“Patients that I see do experience a lot of stigma when they become diagnosed with HCV,” he said. “Many patients who have coped very well with their HIV diagnosis become very depressed and isolated as, particularly in the gay community, HCV has become the ‘new HIV.’ Many of my patients describe feeling dirty and want to be treated as soon as possible so that they can get rid of the HCV.”

Farnworth said the years during and after treatment can see patients making dramatic, rewarding changes in their lives, not just in their health but in their personal and professional lives, embarking on a new career or making other life changes.

“I think one of the best things about my job is seeing very positive changes that patients make in their lives whilst going through treatment. For example, stopping smoking, drinking or recreational drugs,” he said. “I am always struck by how patients turn something as dark as a hepatitis C diagnosis and treatment into something so positive and life-affirming.”

Copeland said he’s also hopeful that new research will find ways to treat HIV as effectively as HCV. Until that day arrives, he emphasized the importance of perseverance for patients facing the added challenge of living with two debilitating conditions.

“Don’t give up hope,” he said. “Don’t give up on yourself. That mental attitude is very important with coinfection.”