Guide to Hepatitis C for People Living With HIV
Testing, Coinfection, Treatment and Support
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:
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.
How Serious Is HCV?
Unlike HIV, hepatitis C can be cured. There are two ways this can happen:
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.
In a smaller percentage of people, chronic HCV can cause liver cancer and liver failure. 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.
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. 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 hepatitis C and HIV is common among current and former IDUs, especially in countries where access to syringes and/or substitution treatment (methadone or buprenorphine, or heroin maintenance) is uneven, severely restricted, or nonexistent.
What Should I Do First After Learning That I Have HCV?
Many people are living with HIV and HCV, and have done so for many years. If you have been HIV-positive for a while, the shock of being diagnosed with another chronic illness can be difficult to deal with.
Give yourself time to deal with your reactions. Some people need a few days or weeks to adjust to the news, and some people need significantly longer. Coming to terms with your diagnosis is important before you can make rational decisions about what to do next. As you think through the situation, you may feel angry, scared, or withdrawn. These feelings are normal, and many people with HCV have had them.
Coming to terms with an HCV diagnosis also involves learning more about hepatitis C, and seeking support.
You may be able to find information and support from many sources, including friends and family; support groups; your doctors, nurses, and other health care providers; and the Internet.
As with HIV, learning you have HCV may cause you to re-evaluate how you think about your health and well being, your personal relationships, and the role of the medical system in your life. Some people who find out they have hepatitis C have not been to a doctor for years. They may have had negative experiences with -- or have negative feelings about -- hospitals, emergency rooms, and clinics.
One of the best things you can do for yourself is find a doctor who is familiar with HIV and hepatitis C. Also, it's important to remember that both HIV and HCV are treatable for most people, including the majority of HIV-positive people. Even if you do not want to receive treatment for HCV, it's still important to see a doctor for at least one round of medical tests to monitor your overall health.
Many people find that being monitored or treated for HCV leads them to reflect on health-related behaviors and on the activities, patterns, and relationships in their day-to-day lives.
Many newly diagnosed people fear that they have given HCV to friends, partners, or family members. You may be worried about your sexual and drug-using partners. You can learn about HCV transmission, and how to lower the risk of passing on HIV or HCV to other people.
Who Should I Tell?
When you first receive an HCV diagnosis, talking to a friend, partner, or relative can be helpful. But it's up to you to decide who should know. Take time to think about this issue, and about how you would like to share this information.
Are People Around Me Now at Risk?
You can only pass HCV on to someone if he or she comes into direct contact with your blood. Unlike HIV, HCV can live outside of the body for days to weeks and is infectious even after blood has dried.
In practice, protecting the people around you means that you should avoid sharing anything that may contain traces of blood -- even dried blood -- such as syringes and other injection equipment; toothbrushes; razors; and manicuring tools.
Can I Pass on HCV Through Sex?
The risk of sexual transmission is generally much lower than through direct blood contact, but may be more common than we previously believed. Unlike HIV, which is present in blood, semen, vaginal fluids, and breast milk, the hepatitis C virus is primarily found in blood. However, any type of sex that may involve blood is an opportunity for HCV transmission. This includes fisting; anal or rough vaginal sex without condoms; and sex during menstruation. Being infected with a sexually transmitted disease (STD) such as herpes, gonorrhea, or syphilis increases the risk for sexually transmitted HCV.
Recently, there have been reports of new HCV diagnoses in cohorts of HIV-positive gay men. The overall number of infections has been low. However, the fact that HCV is spreading among HIV-positive gay men via sexual transmission emphasizes the need to pay attention to which types of sexual activity may be more risky than others.
Can I Be Re-Infected With Another Strain of HCV?
Having one type of HCV doesn't protect you from being infected with a different type of HCV (see the information on HCV genotype in pages "HCV Genotype," "How Long Is a Course of HCV Treatment?," and "Predicting the Response to Treatment").
Also, people who have cleared HCV can become infected again in the future, in any of the ways discussed in this guide.
Are There Other Types of Hepatitis?
As noted earlier, hepatitis is the medical name for liver inflammation. Some causes of hepatitis include heavy alcohol consumption; exposure to chemical fumes; and certain medications.
Several different viruses also cause hepatitis. The viruses are named alphabetically (A, B, C, D, E, and G) in the order they were discovered. Before hepatitis C was discovered in 1989, the virus was referred to as "non-A non-B hepatitis."
Hepatitis A and B
After an HCV diagnosis, it's important to find out whether you are protected against hepatitis A and B -- you really don't want another hepatitis virus to complicate your health. People who have been infected with and cleared these viruses in the past have antibodies in their blood that should protect them from being infected by the same viruses in the future. If you do not have antibodies, you can be vaccinated against hepatitis A (HAV) and hepatitis B (HBV).
This article was provided by Treatment Action Group. It is a part of the publication Guide to Hepatitis C for People Living With HIV.