Research Initiative Treatment Action (RITA!) Vol. 10, No. 2 - Fall 2004
Jules Levin

I have had HIV for 20 years and was infected with the hepatitis C virus (HCV) at least 20 years ago. So I was co-infected. The reason I say "was" is that I am no longer co-infected; that is, I don't have HCV anymore. I successfully finished my second course of treatment for HCV about 2 years ago. I eradicated HCV, or "cured" it. This essay is about me and my experience in addressing my HCV. RITA! asked me to write this article about my experience to help others in dealing with HCV. I agree that others can learn from my experience, so I hope this helps.

I strongly suspected that I had HIV 20 years ago because I had been injecting drugs for years. So I tested for HIV and was positive. But I did not realize that I might have HCV. In 1995, with the advent of protease inhibitors, which I believed would lead us to control of HIV, I started the National AIDS Treatment Advocacy Project (NATAP) whose sole mission was to educate people about HIV treatment and help people to improve treatment decision-making. I knew HIV could be beaten, and the answer was simply to make good treatment decisions. About 9 years ago, I figured out that I could also have HCV, not because my doctors told me but because I realized this on my own. I was tested and as suspected, I had HCV. Of course, I had a liver biopsy immediately, as the liver biopsy is the most reliable way to diagnose the stage of liver disease. Liver enzyme tests (ALT, AST) are not reliable barometers of the stage of liver disease. It is usually crucial to know your stage of liver disease in deciding when to begin HCV treatment. Unfortunately, I was told I had an advanced stage of liver disease—cirrhosis. There is no way to know how long I had HCV, but I believe I had it for at least 12 years and perhaps 15 years. Having HIV probably accelerated the progression of my HCV disease.

I went into action against HCV just like I did with HIV. I very quickly started therapy with standard interferon plus ribavirin. At the time, pegylated (peg-) interferon was not available yet, so I self-injected the interferon 3 times per week. I was genotype 2, so I expected a great response to therapy. Unfortunately, I had absolutely no response. I anticipated attempting re-treatment with peginterferon plus ribavirin, but I had to wait for its availability. I couldn't wait very long because my ALTs were increasing to over 200, and I had an uncomfortable feeling around my liver. I suspected I needed to be treated rather quickly. Once you have cirrhosis, the risk of progression to a serious stage called "decompensated cirrhosis" is up to 4% per year. To gain access to peginterferon, I traveled over 1000 miles from my hometown in New York City to enter a study. I was the second study participant and took once weekly injections of peginterferon plus 800 mg ribavirin daily. At first, I had to travel every week from New York to the study site for drug pick-up and bloodwork. After about 1 month, the visits were less often, every 2-3 weeks. And after several months, I could begin to increasingly space out my visits. My first viral load test was after 6 weeks on therapy and it was undetectable. When 2 weeks passed, I tested my liver enzymes and they had declined appreciably, so I knew I was responding well. Seeing such a good early response is an important signal that you have a good chance to achieve a "sustained virologic response" (SVR). Studies show that 99% of patients who achieve an SVR are "cured." Every piece of research data confirms that HCV is "curable," which means simply that HCV can be eradicated. Studies have followed several thousand patients with SVR for about 4 years and about 100 patients with SVR for as long as 10 years. No sign of virus has been found in the blood or the liver of either group.

It's been 2 years since I completed my second course of HCV therapy with peginterferon plus ribavirin, and I have not felt better in more than 20 years—I feel great. Just as studies have found in patients who achieve and sustain an SVR, I have much improved energy and mental skills. I didn't realize how much HCV was affecting me until after therapy when I saw the improvement. I started to feel more energy and noticed improved mental skills shortly after finishing therapy, but since then I have continued to experience incremental improvements over the past 2 years. I feel very lucky.

The best decision I made was to start therapy and to stick with it. Of course therapy is difficult to tolerate as you may be aware of, but for me it wasn't as bad as I thought it would be. It affects everyone differently. For some patients, the side effects are not so bad and for others they might be worse. But for me it was well worth it.

The only way for me to evaluate the condition of my liver now post-treatment is to do another liver biopsy, but I am not planning to perform a biopsy. An improvement in the condition of one's liver is to be expected along with an SVR. So I expect that my liver disease—my cirrhosis—is reversing and improving. The latest studies show that cirrhosis IS reversible. Of course, the best approach is not to delay therapy until you have cirrhosis. Response rates to therapy are best when therapy is started at earlier stages of disease. You have to be very careful if you have HIV and HCV because HIV can accelerate HCV disease progression by 2 times. So, if you have a liver biopsy performed and even if you only have stage 1 or 2 (stage 3 is bridging cirrhosis and stage 4 is cirrhosis, depending on the system and test used), I suggest starting therapy.

For a decision about treatment, there are a few things I recommend considering. There is no way to figure out if you will respond well to therapy unless you try it. You can always stop therapy. After 12 weeks of therapy, you can evaluate your chances for a "cure." The early viral response (EVR) formula tells us that if after 12 weeks there is a 2-log decline in viral load or an undetectable viral load, the chances of achieving an SVR or cure are good, 60% to 70%. If this status is not achieved by 12 weeks, the chance for success with therapy is very low and you can consider stopping therapy. Good adherence is crucial to achieving an SVR. Studies show that greater than 80% adherence significantly improves response rates. Because therapy is only for 12 months, there is no excuse (in my opinion) to miss any doses. One additional point regarding my therapy: although the standard duration of therapy for co-infected individuals is 12 months, I continued therapy for an extra 6 months for a total of 18 months. The reason I did this is because results from several studies suggest that if you see an EVR and if your viral load is undetectable by week 24, you are more likely to achieve an SVR if you prolong therapy an extra 6 months. So I did this. I suggest you consider this if your circumstances are similar.

An important point to also consider is that interferon has certain properties that allow it to slow down liver disease progression even if the viral load is not reduced. This is important because in about 4 years, new drugs being developed now will start to become available. It's crucial to prevent progression to cirrhosis while waiting for these new drugs, so be careful about delaying initiation of therapy. Undue delay in starting therapy may put you in a bad situation. HCV disease might progress. As well, if you think by waiting you can avoid taking interferon, think again. Even if we have a new drug or 2 in several years, peginterferon will most likely have to included as part of the regimen.

In conclusion, I am very fortunate to have had success with HCV therapy and eradicated HCV. This has given me a whole new life. Of course, I have used the improved energy I have by increasing the amount of work that I do. If you don't know what I do, NATAP provides up-to-date HIV and hepatitis treatment information and education through our website at natap.org, our HIV and HCV newsletters and HCV Handbook, and our community forums that we hold in cities throughout the US. Please access our website or call us toll free at 888.26.NATAP for information and newsletters.

Jules Levin is the Founder and Director of NATAP.

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Copyright © 2004 - Research Initiative Treatment Action (RITA!). Reproduced with permission. RITA! is published by The Center for AIDS. Contact Thomas Gegeny, MS, ELS, Editor, RITA! for permission to reproduce RITA!. tom@centerforaids.org. http://www.centerforaids.org

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