“Knowing about HCV helps you make decisions on how to take care of yourself.”—Beri Hull
Beri Hull was diagnosed with hepatitis C in 1992 and HIV in 1993. After seeing her co-infected friends die of liver disease, even though they had high CD4 cell counts and low HIV viral loads, Hull started learning about hepatitis C virus (HCV).
“Being in denial, and not knowing much about hepatitis C makes it more frightening,” said Hull, who is the Global Advocacy Officer at The International Community of Women Living with HIV and AIDS (ICW). Her advice: “Don’t panic; a lot of people don’t need HCV treatment, but co-infected people need to be more on top of the situation. Learn as much as possible about HCV and get a biopsy.”
Hull went on HCV treatment in 1999. Although her hepatitis C virus became undetectable after five months of treatment, the side effects—depression, fatigue, anemia, and weight loss—were severe, and she stopped treatment at the end of six months. Unfortunately, her hepatitis C viral load re-surfaced within weeks.
Hull is planning to have a second liver biopsy to see if she can delay re-treating her hepatitis C. She is hoping to wait until better HCV treatment is available. “Since I’m African American, and have HCV genotype 1, it is unlikely that I will respond to pegylated interferon and ribavirin. If my liver can hold up, I’ll hold on.”
Hull offered some practical suggestions for people dealing with HIV and hepatitis C:
- Find a doctor who is willing to deal with both your hepatitis C and your HIV.
- Try to line up insurance coverage for your HCV treatment.
- If you are considering treatment, be very aware of the side effects and talk to people who have been on HCV treatment.
- Consider taking an antidepressant before starting treatment.
- Know your energy level will be compromised while you’re on treatment, and be ready to adjust your life to lower stress and demands on your energy.
HIV doctors are beginning to focus on hepatitis C co-infection, but many remain reluctant to deal with the problem. Hepatitis C may go undiagnosed or untreated until after serious liver disease has developed. Even when people are promptly diagnosed, there are significant barriers to HCV treatment: access is limited, HCV treatment is less effective for HIV-positive people, and side effects tend to be particularly severe. Many clinicians are reluctant to treat drug users and people with a history of depression, even when they are stable, willing to go on treatment, and it is medically necessary.
Co-infected people with concomitant diagnoses have been successfully treated for hepatitis C through a multidisciplinary model incorporating medical and mental health care, peer support, education, and services for drug users.
Hepatitis C Diagnostics
Hepatitis C testing is recommended for all HIV-positive people, since as many as 30% of people with HIV may be co-infected with HCV. Often, people don’t have any symptoms until they have had HCV for many years and serious liver damage has already developed.
Hepatitis C does not always develop into a chronic infection. Some people clear the virus without treatment, although they remain antibody-positive for hepatitis C. HIV-negative people are more likely to clear HCV without treatment than HIV-positive people. A negative hepatitis C antibody test doesn’t always rule out chronic HCV infection. An HCV viral load test is needed to diagnose chronic hepatitis C infection (see Figure 1, Hepatitis C Diagnostics).
With hepatitis C, the viral load does not indicate or predict disease progression. A low hepatitis C viral load is less than two million copies or 800,000 international units, unlike HIV. People with low hepatitis C viral loads are more likely to respond to hepatitis C treatment.
Finding out which hepatitis C genotype you have is important, because genotype helps to predict response to HCV treatment. There are at least six different genotypes of hepatitis C and many subtypes. In the United States, genotype 1 is most common. Unfortunately, hepatitis C treatment is not as effective for genotype 1 as it is for genotypes 2 and 3.
Having liver enzymes checked regularly is especially important for co-infected people taking ARVs (antivirals). Some HIV medications are metabolized by the liver; elevated liver enzyme levels may signal difficulty with a particular drug or combination of drugs. Unfortunately, liver enzyme levels cannot be used to predict hepatitis C disease progression, or to reveal liver damage.
Hepatitis C does not always need to be treated, depending on the extent of liver damage—and other key factors, such as willingness/readiness to treat, access to treatment, and eligibility. A liver biopsy is sometimes referred to as the CD4 cell count of hepatitis C. Biopsy is the best way to assess liver scarring (stage) and inflammation (grade). Research on less invasive alternatives is underway, but biopsy remains the gold standard, although it is painful, and there is a very small risk of serious complications.
Last Words
“My experience with HIV helped me to deal with hepatitis C,” says Hull. “Activism and advocacy—working with people—have been a very powerful and spiritual incentive, and have improved my life.”
Tracy Swan is Coinfection Project Director at Treatment Action Group, New York City.
Having Liver enzymes checked regularly is especially important for co-infected people taking ARVs (antivirals). |
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