The Hep C Revolution
New hepatitis C treatments are changing the equation for people coinfected with HIV and hep C: shorter treatment times, reduced side effects and sky-high cure rates.
By Sony Salzman
Zak Knowles was diagnosed with HIV in 1990. He did well on treatment and had been living with HIV for almost a decade when he tested positive for hepatitis C. This second diagnosis was far more distressing, Zak recalls, because he didn’t know what to expect of hepatitis C treatments that were available at the time.
In the late 1990s, the only treatment for hep C was a grueling six- or 12-month regimen of injections and pills with severe side effects. To make matters worse, treatment usually only worked about a third of the time for people coinfected with HIV and hep C, forcing many to endure multiple rounds.
Unlike HIV, which attacks the immune system, hep C goes after the liver. Because of Zak’s relatively advanced liver damage, his doctors recommended he start treatment immediately. This meant weekly injections of pegylated interferon and daily ribavirin pills. He tried this treatment twice. Unfortunately, both times he started treatment, Zak experienced dangerous drug interactions that landed him in the hospital. His doctors at the time didn’t realize that ribavirin could interact with his HIV med AZT.
Zak started seeing a coinfection specialist, who switched his HIV medication. After a few months Zak tried hep C treatment a third time. During six months of treatment, he lost his appetite and more than 20 percent of his body weight. “I lived on Ensure,” he says. “That was the only thing I could keep down. That and ginger ale. I kind of became addicted to ginger ale.” He also felt extremely fatigued, sometimes needing hours just to get up in the morning. And the nausea he experienced was so intense that today he says he still has a “Pavlovian response” when he smells rubbing alcohol, which he used to sanitize the site prior to his weekly interferon injections.
Thankfully, his third attempt to clear the hep C virus was successful: In 2005 Zak was finally cured. That period of being on hep C treatment was undeniably “the most miserable time of my life,” Zak recalls. Although he went through hell, he advocates treatment for all people with hepatitis C—especially since drugs today are nothing like they used to be.
New game-changing drugs
Since 2011, a groundbreaking new class of drugs called direct acting antivirals (DAAs) has transformed what it means to have hep C. These drugs don’t cause horrific side effects and the newer ones cure almost every person on the first try. In some cases, treatment is as simple as one pill per day, taken for two to three months.
These new medications are truly game-changing, and they couldn’t have come soon enough.
Hepatitis C is a big problem among people living with HIV. In Canada, almost one third of people living with HIV are coinfected with hep C. Yet for decades treatment was so onerous that many doctors hesitated to put their patients through the ordeal. “The treatments were so miserable,” says Dr. Jordan Feld, hepatologist and researcher at the Francis Family Liver Clinic, in Toronto, but with the new drugs “things have changed dramatically.”
In clinical trials of the latest DAAs, HIV-positive individuals were just as likely to be cured of hepatitis C as HIV-negative people. With so many effective treatments available, Feld predicts that people living with HIV might be the first large demographic to be free of hep C. “That might be a bold statement, but I think it is realistic,” he says. “It’s relatively easy to screen people with HIV for hepatitis C, and we can now cure almost everybody of their hep C.”
He points out that liver disease is now a leading cause of death for people with HIV, and “a lot of that liver disease is related to hepatitis C.” Coinfection can accelerate liver damage, so eliminating hepatitis C from the HIV community would be a major public health achievement.
Getting more people on treatment
The first and most important step in curing hepatitis C is getting diagnosed. The Canadian Liver Foundation recommends hep C testing for all HIV-positive people, as well as all baby boomers (born between 1945 and 1975, including people who have undergone medical procedures or been immunized in countries where hepatitis C is common) and people who have injected street drugs. Despite the high prevalence rate in this country, nearly half of all Canadians with hep C are unaware of their infection.
“Treatments are fantastic, but they are only great if you get them,” Feld says. Most HIV care providers are aware of screening recommendations, but still too few HIV-positive people are being tested for hepatitis C.
The second hurdle is overcoming the fear and misinformation surrounding hep C treatment. As Zak Knowles described, “scare stories” about the debilitating side effects of the old regimens seem to have created a lasting negative impression that deters some people from seeking treatment. According to Feld, despite headlines trumpeting a revolution in hep C treatment, a surprising number of his hep C patients have no idea that newer, far superior treatment options are now available.
Special considerations for people with HIV
There are now several interferon-free medications that can cure hepatitis C. The main difference between them is that some work better against certain strains, or genotypes. Different regimens also vary in pill number and schedule, but their effectiveness is generally comparable. A medication is chosen based on a person’s prior treatment history, degree of liver injury and hep C genotype.
For people living with HIV, it’s safest to start hep C treatment after a few months of consistent HIV antiretroviral therapy. This gives your immune system the best chance at fighting hepatitis C. According to Feld, new hep C medications are far less likely to cause dangerous interactions with HIV meds, like those Zak experienced more than 10 years ago. People with HIV are also less likely to need to switch HIV medications before starting hep C treatment, although doctors still need to check for drug interactions with any combination.
Soon new drugs will be able to cure any hepatitis C, regardless of a person’s genotype. These “one-size-fitsmost” drugs will make it even easier to treat coinfected patients, says Feld. However, one expected advancement in hepatitis C treatment—even shorter treatment times down the road—is less likely to benefit people with HIV. “When we push the limits of therapy [experimenting with even shorter treatment times in clinical trials], people with HIV don’t do as well,” Feld cautions. To be on the safe side, he says, people with HIV will likely need to be treated for eight to 12 weeks, while others may eventually need only six, or even four, weeks.
While the new generation of hep C meds represents a major medical achievement, these drugs don’t come cheap, ranging in price from $55,000 to $80,000 for a regimen. These high costs prevent many people who don’t have insurance from starting treatment right away.
People with HIV see enormous health benefits after being cured of hepatitis C. For Zak Knowles, treatment changed his life. Cured of hepatitis C, Zak had far more energy; he could go hiking and enjoy other activities he had given up during treatment. And for the first time in years, he found he enjoyed eating again.
Zak would do it all again if he had to. Fortunately, most people with hep C today have much better options. Some are still understandably wary of treatment, but Feld likes to remind his patients of the early days of HIV drugs: “Remember how difficult HIV care used to be? Bags of pills, tons of side effects—it was miserable,” he says. “Hepatitis C care has gone through the same revolution, just faster.”