Testing Positive for Hepatitis C -- Now What?

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Testing positive for antibodies to the hepatitis C virus (anti-HCV) may be scary, but now you have information that can improve your health and well-being. This fact sheet will explore what testing positive means, and what you can do about it. Don't panic -- the knowledge you now have will help you make healthier decisions for you and your liver. Information is the key to living well with hepatitis C.

Testing Positive for Antibodies Doesn't Necessarily Mean You Have Hep C

When you test positive for anti-HCV, it means that you have been infected with the hepatitis C virus (HCV). What the test doesn't tell you is whether you currently have HCV. About 55-85% of people with anti-HCV still have the virus in their body six months after infection. This means that 15-45% people (about 1 in 4) have antibodies, but not the virus. In these people, their immune system was able to "clear," or get rid of, HCV. If you test positive for anti-HCV, you need to get a confirmatory viral load test to see if you still have HCV. This test measures HCV RNA, or genetic material in the blood. If you have "cleared" or "resolved" the virus, this test will come back "undetectable." If the test comes back "detectable," then you are living with chronic (long-term) hepatitis C.

If You Don't Know Whether or Not You Have HCV, Live Like You Do

If you know you have antibodies to HCV, but have been unable to get the additional confirmation test, you are not alone. The viral load tests are expensive and hard to get without insurance. Since most people who have anti-HCV do have HCV, the best thing to do while you wait for the test is to live like you have hepatitis C, taking good care of yourself and protecting the health of your liver.

If You Have Hep C, You Have Time

Once you are confirmed as having hepatitis C, there will probably be many things running through your mind. Hepatitis C is a slow-moving disease, so most likely you will have a lot of time to make decisions about your health. Take the time to learn about hepatitis C and make the right decisions for yourself. Don't make any snap decisions in the moment. In fact, you shouldn't make any important decisions right away -- you may still be in shock. There may be some days when you feel balanced and ready to take steps towards a healthier life, and other days when you don't want to deal with your hepatitis C -- this is normal. Take the time to think about what is important for you now, and remember you will have time to make all the decisions you need to make.

Your Body, Your Liver and Hepatitis C

Your liver is the largest internal organ and has over 500 important functions. Almost everything that we eat, drink, smoke, swallow, or absorb through the skin goes through the liver. Since hepatitis C affects the liver and can cause liver damage, you may want to think about what you put into your body so you can minimize the harm to your liver. The most harmful thing for your liver is alcohol, so it's important to reduce your alcohol intake as much as you can. Eating a healthy, low-fat, low salt diet, drinking lots of water, and getting enough rest and moderate exercise will help your liver do its job.

Disclosure: Telling Others You Have Hepatitis C

You may be wondering how to tell others that you have tested positive for HCV. First, you don't have to tell anyone until you are ready; however, it is important to tell your healthcare provider (who will keep it confidential) because having hepatitis C may influence the medications and tests you get. If you have only a positive antibody test result, you'll have to decide if you want to disclose now or after your confirmation test. There are two main reasons to tell others: support for yourself and because you think they should get tested for hepatitis C. Think about whom you want to tell, why you want to tell them, how you will tell them, and when and where you will tell them. Make sure you have support by first telling someone who will be there for you.

Preventing Transmission to Others

While it is important to take care of yourself, you may also have questions about how to make sure you don't transmit HCV to someone else. HCV is transmitted through direct blood contact -- someone else has to get your blood directly into their blood through sharing a needle, a razor, nail clippers, a toothbrush, or anything that may have your blood on it. HCV has been found to survive outside the body for up to four days. Even when blood is present, there also has to be an opening for the blood to get into the other person's body. It is also possible for HCV to be transmitted through sex or from a mother to her baby during pregnancy or birth, but this doesn't happen very often. You cannot transmit HCV through hugging, kissing, sharing eating or drinking utensils, or sharing a bathroom.

Next Steps: Medical Care for Hepatitis C

In addition to getting your positive antibody test result confirmed, it is important to get additional testing and vaccinations once you know you have HCV. You need to be tested for, and, if needed, vaccinated against hepatitis A and hepatitis B if you have hepatitis C to avoid getting more than one type of hepatitis, which will be hard on your liver. Your doctor will do more tests to see if your liver is damaged. You may also want to find out what kind of HCV you have (called genotype) and how much HCV you have in your blood (called viral load). Getting all of these tests will give you and your doctor information so that you can make the best treatment decisions.

Deciding About Treatment

There are treatments that can cure over 90% of the people who take them, HCV treatment is very expensive. Talk to your doctor and people who have tried the treatment to help make your decision. Many people find that complementary therapies such as acupuncture, massage and herbs are helpful in managing their hepatitis C. It is important that you talk with an expert and consult with your doctor since some herbs can be harmful to the liver.

Experimental Drugs to Treat Hepatitis C

There have been many advances in the treatment of HCV since the virus was first identified in 1989.

Researchers are studying a wide variety of medications to treat hepatitis C that includes HCV inhibitors. Talk to your doctor or nurse about whether it is safe for you to wait or if you need to be treated before the newer drugs become available.

The drugs that are approved to treat hepatitis C are very expensive and not everyone can afford to be treated. There are options such as patient assistance programs and clinical trials. There are resources listed at the end of the fact sheet and on our website.

Getting Support

If you have hepatitis C you are not alone -- there are more than four million others in the U.S. Many people find it helpful to join a support group or connect with people on the Internet who also have hepatitis C. Talk with people who care about you and ask for support. For more information on support groups in your area, visit http://hcvadvocate.org/resources/support-groups/.

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