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AIDS Action is here to help.  If you have questions or need support call the HIV Hotline at 800.235.2331 or the Hepatitis Hotline at 888.443.4372. 

HIV/AIDS Basics

Hepatitis C Frequently Asked Questions

What does “Hepatitis” mean?

Hepatitis means “inflammation of the liver.”  Many viruses, alcohol, drugs, and various chemicals can cause hepatitis.

 What is “Hepatitis C?"

Hepatitis C is a blood-born virus that causes damage to the liver.

How is Hepatitis C different from Hepatitis A and Hepatitis B?

Although Hepatitis A, B, and C are all viruses that damage the liver, they are all different and otherwise unrelated. 

Hepatitis A is spread through ingesting fecal matter (e.g. through changing diapers and not washing hands, performing oral to anal sex, eating contaminated food or drinking contaminated water, etc.).  It is an acute infection that can make people extremely sick shortly after contracting the disease.  Once people clear the virus, they cannot be reinfected.  There is a vaccine to prevent Hepatitis A infection.

Hepatitis B is spread through blood, semen, vaginal fluids, breast milk, and saliva.  It is extremely easy to spread through sharing needles and also quite infectious through anal and vaginal sex.   It can also be passed from mother to child during birth or breastfeeding.  While hepatitis B infection can be acute for some, it is more likely to be a chronic infection.  Hepatitis B can be either very mild or severe.  It is more likely to be severe in children or very young people.  There is a vaccine to prevent Hepatitis B infection.

Hepatitis C is spread only through blood.  It is spread mainly through sharing needles and before 1992 it was spread frequently through blood transfusions or other blood products.  Hepatitis C is not often spread through sex, unless blood is involved.  Although hepatitis C can lead to cirrhosis and liver cancer in some people, in most cases it does not.  There is no hepatitis C vaccine.

What are the symptoms of hepatitis C?

In most cases, people infected with hepatitis C experience no symptoms. Hepatitis C is a very slow moving virus, so symptoms my not even present themselves for 20 years or longer. The most common symptoms of hepatitis C are fatigue, nausea, abdominal pain, muscle or joint pain, and jaundice (a yellowing of the eyes, skin, and mucous membranes).

How is hepatitis C transmitted?

Hepatitis C is a blood borne virus, and is transmitted through direct blood-to-blood contact. The most common ways for hepatitis C to be transmitted is through sharing needles with an infected person, having had a blood transfusion prior to 1992, sharing personal care items such has razors that could have infected blood on them, and from mother to child during childbirth. in rare cases, hepatitis C can be transmitted through sex.

How easy is it to get hepatitis C from sex?

It is possible to transmit hepatitis C through sex, but it is not an efficient transmission method.  It is much more likely to get hepatitis C through sharing needles or "works", or having had a blood transfusion before 1992.  Having a sexually transmitted disease or having sex that involves blood can increase the risk of getting hepatitis C through sex.

What is the risk of transmission of hepatitis C from mother to child?

About 5% of babies born to hepatitis C infected mothers will become infected with hepatitis C themselves.  There is no known way to reduce the risk.  The risk increases to about 17% if the mother is also HIV infected.

 If people get hepatitis C, will they always have it?

Hepatitis C is interesting in that about 15% of people who get the infection can clear the virus completely out of their bodies naturally within the first 6 months of their infection.  This means that those people are no longer infected and can no longer spread the virus to other people.  However,  85% of people with hepatitis C will become chronic carriers.  These people will always be capable of transmitting the virus to others through blood.  Nobody knows why some people clear the virus and some people don't.  There is no way to know in advance who would naturally clear it and who would not.  However, a test can be done to determine whether or not a person still has hepatitis C.

Some people who have not naturally cleared the virus are able to clear it with the use of two medications called Interferon and Ribavirin.  These medications don't work for everyone, but about half of the people who take them for one year will clear the virus completely from their bodies. Once hepatitis C is cleared, someone can be reinfected if exposed to the virus again.

Can people become reinfected with hepatitis C?

Yes.  People who have cleared the virus either naturally or through medication can become infected again. Also, people who have active hepatitis C can become infected with additional genotypes (strains) of hepatitis C.

 If people have hepatitis C, will they get sick or die from it?

Most people who become infected with hepatitis C do not get seriously sick or die from it.  However, of those who have chronic infection, about 20% of people will develop serious liver diseases like cirrhosis, liver cancer, or liver failure.  When people become infected with hepatitis C, there is no  way to predict whether or not they will go on to develop serious problems.  Most people with hepatitis C will live for more than 20 years without having any serious symptoms.

 Are there things that can make hepatitis C worse or make symptoms appear faster?

Yes.  If someone has hepatitis C, there are several things that can increase the likelihood that the virus will cause liver damage. 

Drinking alcohol (any amount) is very dangerous to a person who has hepatitis C since alcohol also causes liver damage.

In HIV and hepatitis C coinfected people, the risk of developing liver damage is much higher than in those people who only have hepatitis C.  When people are coinfected with HIV and hepatitis C, they will most likely get sick from hepatitis C much sooner than if they only had hepatitis C.

Some medications are very harsh on the liver and generally should not be taken when people have Hepatitis C.  However, sometimes an urgent medical need for a particular medication overrides the possibility of liver damage.  This is something for people to talk about with their doctors.

 When was hepatitis C first discovered?

Doctors and scientists recognized a type of hepatitis in the early 1970's that they called Non-A, non-B hepatitis.  In 1987, they discovered that it was a unique virus and named it Hepatitis C.

 How can people find out if they have hepatitis C?

Since 1992, antibody tests have been available to determine if people have been infected.  Today, people can have these tests performed at their doctors' offices.  For people with no insurance, there are some clinics that can also perform the tests for free or reduced fees.

For people who would like to get tested, it is a good idea to wait between 3-6 months from the last time they had a risk of infection before they go in for the test.  This is because it takes up to 6 months for people to develop enough antibodies to be detected on a test.  However, if someone has had many risks over a long period of time (IV drug users, for example) they may want to go in for a test even if it has been less than 3-6 months.  If the test is negative, those people might want to get retested later. 

What is the window period for hepatitis C testing? 

It is recommended that an individual waits 3-6 months after their possible hepatitis C exposure before getting tested. This is referred to as the "window period".

What does a positive hepatitis C antibody test mean?

A positive antibody test could mean one of two things.  It could mean that a person is infected with hepatitis C and is a chronic carrier.  Or, it could mean that the person was infected with hepatits C but has cleared it from his or her body.  An antibody test cannot tell anyone which of those two categories applies. Once infected, you will always have hepatitis C antibodies, and therefore will always test positive on a hepatitis C screening test. If you test positive for hepatitis C on an antibody test, it is recommended that you get follow-up testing to determine if you have an active infection.

 Can you get a false positive hepatitis C test result?

It is possible to get a false positive test result.  This happens when a doctor or laboratory has not performed a confirmatory antibody test before giving people their results.  When a person has an antibody test, the lab usually runs two different kinds of tests.  One is called an EIA  test which is highly sensitive.  It can sometimes overreact, so a positive result with the EIA is usually followed up with a RIBA test which is a sophisticated, highly-specific, antibody test.  Sometimes, a viral test called the PCR is done instead of the RIBA to confirm a positive EIA.

If someone is at low risk of having hepatitis C (never ever shared a needle, never had a blood transfusion) and gets a positive antibody test, it is a good idea for that person to ask his or her doctor if a RIBA or a PCR test was performed.  If it was not, the person may want to request one of those two tests to truly know if he or she is or was infected with hepatitis C.

 Are there tests to determine whether or not a person has cleared hepatitis C?

Yes.  If a person has a positive antibody test, he or she should then have a viral test.  This is usually called a PCR test.  This type of test is looking for the actual virus, rather than the antibodies and can tell if there is any hepatitis C in that person's body.  If the PCR test is negative, that means that the person has cleared the virus and is no longer infected.  If the PCR test is positive, that means that the person still has active hepatitis C.

 Are there tests to determine how much liver damage people have?

Once it has been determined that someone has hepatitis C, many tests will likely be performed on a regular basis.  These tests which include liver enzyme (ALT, AST) and viral load tests, are often performed every few months to track changes or patterns in the way that person's liver is functioning and how quickly that person's hepatitis C is replicating.  Those tests give only some indication that hepatitis C may be causing liver damage.  Sometimes an ultrasound and/or a liver biopsy may also be performed.  Liver biopsies are the best way to determine the amount of liver damage a person has.

 What is a genotype test?

Genotypes are strains of a particular virus.  We know that there are 6 genotypes for hepatitis C.  Genotype 1 is the most common in the U.S.; genotypes 2 and 3 are the most responsive to treatment.  It is possible to have more than one genotype.  It is useful to have a genotype test before deciding whether or not to start hepatitis C treatment.

 What are some things that someone with hepatitis C should avoid?

Avoiding alcohol (even small amounts) is extremely important.  Tylenol and other over-the-counter and prescription drugs can also cause liver damage.  High iron diets can cause damage.  Good nutrition, exercise, and sleep are helpful in keeping the liver healthy.

 What are some current treatments for HCV?

Interferon and Ribavirin are the only FDA approved drugs used to treat hepatitis C.  They are usually used in combination with each other.  This involves interferon injections once per week along with daily pills.  Most people stay on the medication for one year.  However, people who have genotype 2 or 3 may only need to stay on the medication for 6 months.  Some people use herbs such as milk thistle to reduce symptoms that hepatitis C might cause. It is important to talk to your doctor before taking herbs and supplements, as some have toxic effects on the liver.

 What are some considerations when thinking about starting treatment for hepatitis C?

Making a decsion about starting hepatitis C drug therapy is difficult.  Here are some things to consider.

Prognosis:  Since most people don’t get seriously sick from hepatitis C, it doesn’t make sense for every infected person to go on treatment.  It is a good idea to take test results (patterned liver enzymes and PCR, ultrasound, and liver biopsy) into consideration.  If the liver is not at all damaged, treatment is generally not recommended.  If the liver is too damaged, the treatment may not work.

Efficacy:  The current medications don’t work for everyone.  Having a genotype test might help determine how likely the treatment is to work as well as how long the treatment might need to be taken for.  Although the medications only clear the virus for about 50% of people, the other 50% may still gain some benefit from treatment. It is believed by some that a second round of treatment will be effective. This is something to bring up with a doctor.

Side effects:  Most people on hepatitis C drug therapy experience severe side-effects such as serious depression, anxiousness, fatigue, anemia, itching skin, shortness of breath, and constant flu-like symptoms.  The side-effects can literally be debilitating for some people.  However, some people are able to manage the side-effects well.  Sometimes people add antidepressant medications to their treatment regimen to prevent depression.

Other medical conditions:  For many people, hepatitis C is just one of their medical concerns and it may be wise to treat other illnesses first.

Cost:  Hepatitis C medications are usually covered by insurances.  Without insurance, treatment can cost more than $1,500 per month.

Where can I get more information about Hepatitis?

People can call the Massachusetts Hepatitis Hotline at 1-888-443-4372.  Trained Hotline Counselors can answer many questions and can provide referrals to other places to get good information.

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