GUIDE TO HEPATITIS C FOR PEOPLE LIVING WITH HIV: testing, coinfection, treatment, and support First questions Treatment for HCV Dealing with a new diagnosis Living with coinfection GUIDE TO HEPATITIS C FOR PEOPLE LIVING WITH HIV: testing, coinfection, treatment, and support New York, New York Updated October 2009 Thanks to TAG’s board, staff, and generous donors. This work would not be possible without your support. Treatment Action Group is an independent AIDS research and policy think tank fighting for better treatment, a vaccine, and a cure for AIDS. TAG works to ensure that all people with HIV receive life- saving treatment, care, and information. We are science-based treatment activists working to expand and accelerate vital research and effective community engagement with research and policy institutions. TAG catalyzes open collective action by all affected communities, scientists, and policy makers to end AIDS. Funds for this project and its translations were provided by the New York City Council. Credits This publication was written and compiled by Simon Collins (HIV i-Base, UK) and Tracy Swan (Treatment Action Group, US). Additional editorial comments are included from: Sanjay Bhagani, M.D., Polly Clayden, Jen Curry, Marc Ennals, Ramon Espacio, Loon Gangte, Charles Gore, Camilla Graham, M.D., Mauro Guarinieri, Kelly Safreed Harmon, Bob Huff, Marianna Iwulska, Robert James, Maxime Journiac, Svilen Konov, Luis Mendão, Silvia Petretti, David Pieper, Jack Summerside, Joan Tallada, Carmen Tarrades, and Kate Thomson. Illustrator: Lei Chou Designer: Adam Fredericks Copy Editor: Andrea Benzacar Dailey Disclaimer: Information in this booklet is not intended to replace information from your doctor or other healthcare providers. Decisions related to your treatment should be made in consultation with your doctor. Guide to Hepatitis C for People Living with HIV: testing, coinfection, treatment, and support © 2007 Treatment Action Group May be copied for non-commercial use. ISBN 978-0-9791073-3-7 Table of contents Introduction 1 First questions 3 Hepatitis C transmission 11 What happens to people who have hepatitis C 17 Issues affecting people living with HCV/HIV coinfection 23 Acute HCV infection in HIV-positive gay men 23 Chronic HCV/HIV coinfection 25 Tests and monitoring 29 Managing and treating HCV 39 HCV treatment and people who use drugs 51 Side effects and management strategies 55 Research into new drugs to treat HCV 59 HIV drugs and HCV infection 61 Managing cirrhosis 65 Living with HCV/HIV coinfection 69 Other viral hepatitis infections 75 Resources and further information 79 Glossary 83 introduction Welcome to our treatment guide for HIV-positive people who also have the hepatitis C virus (called HCV, for short). The people who wrote this guide have direct experience with HIV and hepatitis C. We have written this guide to encourage you to explore the range of care and treatment choices available to you. We hope this information helps you feel more in control of some of your HCV treatment choices, so that you can focus on other things you want to do in life. This booklet focuses on coinfection with HIV and hepatitis C. Other hepatitis viruses (A, B, D, E, etc.) are very different from HCV and are only briefly discussed. Because HIV and hepatitis viruses are transmitted is similar ways, having both HIV and hepatitis C (called HCV/HIV coinfection) is not unusual. In some countries, coinfection is more common than having HIV alone. Some people have been living with HCV for over 20 years and have chosen to go without treatment. Others were infected more recently. Some of these recently infected people have had HIV for many years. Longstanding HIV infection may be a factor in deciding to treat HCV earlier rather than later. This range of experience underscores the fact that an individual approach to your own health care is essential. We have included short personal quotations throughout this guide. You can find more detailed stories from people living with coinfection in the online United Kingdom version, and you can add your own story to this resource (http://www.ibase.info/guides/hepc/ stories/index.html). The online United Kingdom version of this guide also includes hepatitis information not covered in the print version; see http://www.i-base.info/guides/hepc/extras/index.html. An online US version, also in Russian and Spanish, is available at http://www.treatmentactiongroup.org. At the end of this booklet, we have included a list of organizations, web links, and online sources of support. We have also included a glossary that defines some of the medical terms used in this guide. Glossary terms are highlighted in the text in bold. Our understanding of HCV/HIV coinfection is likely to change as new research findings emerge. Please check online for updates, especially if you are reading this edition after February 2010. 1 f irst questions We would like to briefly address the most basic questions about HCV and HIV up front. You can read more about many of these issues in later chapters. What is hepatitis C? The word hepatitis just means inflammation of the liver. Hepatitis C is a virus that lives mostly in the blood and in liver cells. Infection with the hepatitis C virus can cause liver inflammation and scarring. Mild scarring is known as fibrosis and more serious scarring is known as cirrhosis. Liver scarring resulting from long-term HCV infection reduces the liver’s ability to perform essential functions. Liver damage from hepatitis C usually develops slowly over many years. How did I get HCV? Hepatitis C is transmitted when blood from a person who has HCV—a person who is already infected with this virus—directly enters another person’s bloodstream. There are a number of ways this can happen. The most common are: • Injecting drugs using shared equipment (spoons, caps, and other cookers; cotton; water; and ties) and possibly snorting drugs using shared straws or bills; • Tattooing or piercing with unsterilized needles or ink wells contaminated with blood; • Needlestick injuries (to people who work in health care settings); • Receiving a blood transfusion before 1992, or blood products such as clotting factors before 1987; and • Having unprotected sex with someone who has HCV (see pages 7, 13, and 14). Some people will never know for sure how they got infected, especially people who have had HCV for many years. Knowing how hepatitis C is spread can help you avoid being infected a second time with a different strain of HCV, and also can help you protect other people. 3 How serious is HCV? Unlike HIV, hepatitis C can be cured. There are two ways this can happen: 1. Your immune system responds effectively to the virus during the first few months of infection and eliminates it from your body; or 2. A combination of medical treatments (see “How is HCV treated?” page 41) taken for a limited time rids your body of HCV. If HCV is cured either by your immune system or through treatment, then you may not experience any long-term health consequences. More than 45% of HIV-negative people and up to 20% of HIV- positive people clear HCV without medical treatment during the first six months after they are infected, a period known as acute infection. Clearing HCV during acute infection means that the hepatitis C virus is gone from your body, and that you are no longer infected; this outcome is sometimes referred to as spontaneous viral clearance or spontaneous clearance. Chronic infection refers to cases in which the hepatitis C virus remains in the body after the acute phase. Most people with HCV are chronically infected. Chronic HCV can have a very wide range of outcomes. Some people will never develop significant liver damage, some will have mild liver scarring, and others (between 20% and 30%) will eventually develop cirrhosis. People with cirrhosis from HCV are at risk for liver failure and liver cancer, although not all will develop these complications. Someone experiencing liver failure needs a liver transplant in order to survive. Liver failure resulting from hepatitis C occurs in only a handful of people, usually those who have been infected for many years. Because HCV generally progresses very slowly, there is usually plenty of time to consider your treatment options. HCV progresses more quickly in people who are also HIV-positive and HCV treatment is less successful in HIV-positive people than HIV- negative people. We’ve written this brochure to help answer questions about hepatitis C treatment for HIV-positive people. 4 Will HCV make my HIV worse or more difficult to treat? Generally, coinfection with HIV and HCV complicates both diseases. HIV causes HCV to progress more quickly, although we don’t know why this happens. It is not clear what effect HCV has on HIV. Some studies suggest that coinfected people do not respond as well to HIV medicines. Factors such as ongoing drug or alcohol use, lack of access to health care, homelessness, and poor nutrition may be involved. There are a few drug interactions between HCV and HIV treatments that you need to be careful to avoid. These are discussed in detail in the treatment section of this booklet (see pages 61 and 62). Luckily, although response rates to treatment vary, most people living with coinfection can be treated for both HIV and hepatitis C. People who are coinfected have a higher risk of liver damage from HIV drugs, but the benefits of HIV treatment generally outweigh the risk of additional liver-related side effects. A stronger immune system slows down liver damage from HCV. How common is HCV/HIV coinfection? An estimated four to five million people in the United States have been infected with hepatitis C. Some of these people cleared the hepatitis C virus and are no longer infected, so the number of people who are chronically infected is smaller, though precise figures for chronic HCV infection are difficult to obtain. More than one million people in the United States have HIV/AIDS, and 25% to 30% of them are coinfected with HCV. Worldwide, about four to five million people are coinfected with HIV and hepatitis C. Coinfection rates range from about 9% of HIV- positive people in the United Kingdom to almost 50% in Spain and Italy. Coinfection rates as high as 60% to 70% have been found in groups of injection drug users (IDUs) in various countries, including the United States, which has very high coinfection rates in some urban areas. Globally, sexual transmission accounts for the majority of new HIV infections each year. However, injection drug use is driving the HIV epidemics in Eastern Europe and Central Asia. Coinfection with 5