Simple FactSheet: Hepatitis C

Hepatitis C
a Simple FactSheet from the AIDS Treatment Data Network

||||| What is Hepatitis C?

Hepatitis C is caused by a virus. The hepatitis C virus (HCV) can cause damage to the liver. HCV testing is recommended for anyone who is HIV-positive. About 33% of all people with HIV also have HCV. Keeping an HIV+ person's liver healthy increases their ability to tolerate HIV medication. Keeping a person's HIV under control may also help to slow HCV disease progression. HCV disease appears to progress more quickly in people with HIV disease. HCV can cause serious liver disease, including liver failure, in people with or without HIV.

||||| HCV Transmission:

HCV is transmitted mainly by blood-to-blood contact, although it may be transmitted through unsafe sex. Most people have no idea that they have been infected with HCV, although millions of people worldwide are HCV-positive. Many people do not know how they became infected with HCV when they find out. Some people became infected with HCV through blood products or blood transfusions. The blood supply in the United States has been screened for HCV since 1992.
A person can become infected with HCV by using needles and other contaminated injection equipment. HCV infection is an ongoing risk for health care providers, police and firefighters, and correctional officers. It is also possible, but rare, for a mother to transmit HCV to her unborn child during delivery. HCV is also sometimes transmitted during sex, especially those acts that involve contact with blood. HCV is more likely to be transmitted through sex if the other person's HCV viral load is high. Sharing razors, manicure equipment, toothbrushes, and any other personal care items with blood on them is another possible route of transmission. Body piercing or tattooing with unsterilized equipment or shared inkwells and needles can spread HCV.
About 1 out of 6 people infected with HCV will clear the infection. No virus can be found in their blood. For most people, however, HCV becomes a chronic disease. Some people will never have any symptoms, and won't develop serious liver damage from HCV. Other people will slowly develop liver damage 10 to 30 years after infection. About half the people infected with HCV won't develop serious liver damage during their lifetime. Some people will develop fibrosis (mild to moderate scarring of liver tissue). 1 in 5 people with chronic HCV will develop cirrhosis (serious scarring of the liver, which interferes with the liver's ability to do its job). A small group of people (about 1% to 4%) with HCV will develop liver cancer and/or liver failure as a result of HCV. A liver transplant is the only treatment for liver failure.
It is recommended that people who are HIV positive get tested for HCV. People who are co-infected with HIV and HCV are more likely to develop cirrhosis and/or fibrosis. People with HIV sometimes falsely test negative for HCV, so routine screening is suggested on a regular basis.

||||| Symptoms of HCV:

3 out of 4 people don't have any symptoms when first infected with HCV. Initial symptoms can include: fatigue, nausea, loss of appetite, low fever, stiff and aching joints, jaundice (yellowing of the eyes and skin), dark brown urine, pale feces and liver pain (on the right side of the body, under the ribcage). Later symptoms of liver damage caused by HCV can include jaundice, fatigue, itchiness, mood alterations, depression, forgetfulness and liver pain.

||||| Diagnostic testing:

HCV antibodies will appear by 12 weeks after infection. Follow-up testing such as a RIBA or qualitative viral load test is recommended to confirm HCV infection. HCV viral load results are usually much higher than HIV viral load test results. HCV viral load results range from undetectable to millions of copies. The HCV viral load is usually used to monitor the success of treatment. In people who are HIV infected, antibodies my take longer to develop, sometimes months.

||||| Monitoring Disease Progression:

Ultrasound/sonogram testing is a non-invasive test that uses sound waves to identify liver abnormalities. Usually, a total abdomen scan is done to see if liver damage is affecting other organs such as the pancreas, gall bladder or the spleen. Blood tests, including measurements of liver enzyme levels, as well as HCV viral load testing are also used to determine how well your liver is working. These tests, however, can't predict if, or when serious liver disease will develop. A liver biopsy, a procedure where a thin needle is inserted between the ribs into the liver to remove a small tissue sample, is the only way to determine the actual condition of the liver itself. When done properly, a liver biopsy takes a few minutes to perform, and leaves only a pencil point scar.
The liver is responsible for many things, including processing drugs, herbs and body chemicals, clearing toxic substances from the bloodstream, and turning food into energy. The liver has to stay in good working order for the body to function. Some HIV treatments are harder for the liver to tolerate than others. Certain HIV medications, as well as drugs used for other purposes, should be avoided by people with hepatitis.
There are at least 6 different types, or genotypes, of HCV. The most common genotypes in the US are 1a and 1b. Some people have type 2, 3 or 4. It appears that the hardest types of HCV to treat are types 1 and 4. Types 2 and 3 are easier to treat, although the same treatments are used for all genotypes. Regardless of your genotype, treatment must be used for at least 6 months before it can really said to be effective. Most people will take treatment for a year, especially people co-infected with HIV, as well as people with genotypes 1 and 4. Some researchers believe that 18 months of treatment is needed for people who are HIV/HCV co-infected.

||||| HCV Treatment Decisions:

The results of blood tests, and other procedures you may have had done ( liver biopsy or ultrasound, for example) can help you decide whether you need to start HCV treatment. Deciding when to start treatment is a difficult choice. HCV treatment may be easier to tolerate for people with higher CD4 counts, and people who are in better general health. There are things that people with HCV can do to stay healthy regardless of whether they decide to start treatment.
Many people experience fatigue, depression and, occasionally, more severe side effects when they start HCV treatment. The symptoms of untreated HCV disease can sometimes be severe as well. Symptoms of HCV disease may also improve with treatment.

||||| HCV Treatments:

A combination of ribavirin and a Pegylated interferon is now the standard treatment for HCV. There are two FDA approved pegylated interferons, Peg-Intron and Pegasys. Pegylated interferon is taken as an injection under the skin once a week. Ribavirin is a nucleoside analog like AZT or ddI. It is a pill. The pills are taken twice a day. Studies have shown that after 48 weeks of combination treatment, some people can get rid of HCV (undetectable HCV viral load). Successful treatment is called a Sustained Virologic Response (SVR), meaning that the HCV is no longer detectable in blood tests for at least 5 months after the 48-week treatment. SVR depends on many different factors, including HIV co-infection, HCV genotype, and the person's age, gender, race, and the condition of his/her liver. The treatment outcome ranges from 89% SVR for someone mono-infected (no HIV infection), relatively healthy with genotypes 2 or 3, to a disapointing 30% SVR for someone co-infected (with HIV), with advanced liver fibrosis, or with HCV genotype 1. However, even if the treatment doesn't wipe out the virus, it can sometimes help improve the condition of the liver.
Studies have shown that people who do not respond to treatment in the first 12-week period, by showing a reduction in liver enzymes or at least a 2_log drop in HCV viral load, are unlikely to benefit from continued treatment. It is very important to be fully aware of what side effects might occur and how they can be managed, before you begin treatment. This reduces the chance you will stop treatment before completing the very crucial 12-week starting period.

||||| The Side Effects:

The most common side effects of pegylated interferon include: a decrease in white blood cells and platelets, anemia, nausea, diarrhea, fever, chills, muscle and joint pain, difficulty in concentrating, thyroid dysfunction, hair loss, sleeplessness, irritability, mild to serious depression, and rarely, suicidal thoughts. Other serious adverse events include bone marrow toxicity, cardiovascular disorders, hypersensitivity, endocrine disorders, pulmonary disorders, colitis, pancreatitis, and ophthalmologic disorders (eye and vision problems).
Pegylated interferon may also cause or make worse fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. If you decide to go on treatment, your doctor should monitor you closely with periodic clinical and laboratory tests. Patients with persistently severe or worsening signs or symptoms of these conditions should stop therapy. In many, but not all cases, these disorders resolve after stopping therapy.
Side effects of ribavirin include nausea and anemia. Anemia caused by ribavirin is usually easily treatable. Ribavirin can also cause birth defects (See warning!). Ribavirin should not be taken with the HIV drug ddI (didanosine, Videx, Videx EC), as lactic acidosis with fatal hepatic steatosis (fatty liver) has occurred. This may be more prevalent in people who are co-infected. It is very important to inform your doctor and liver specialist of any symptoms you experience.

||||| Ribavirin/pregnancy warning:

Ribavirin can cause severe birth defects. Women and men who that take ribavirin should not plan a pregnancy for six months after stopping, because ribavirin stays in the body for a long time.

||||| Paying For Treatment:

The drugs used to treat HCV are expensive. Make sure to discuss how you will be able to pay for your HCV and HIV treatments and the associated care with your case manager before starting. A case manager can also help you throughout the treatment process. The Network can also provide you with information on what treatments and services are covered by your state ADAP or Medicaid Program. Contact The Network at 212-260-8868 or 800-734-7104.

Schering-Plough, The maker of Peg-Intron, Rebetol, and Rebetron, has a "COMMITMENT TO CARE" reimbursement assistance program. Call 1-800-521-7157 to enroll.
Hoffmann-La Roche, The maker of Pegasys, also has a patient assistance program, Call 1-877- PEGASYS to enroll.

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Last modified: 8/15/2006
copyright © 2006 The Network
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\|\|\|\|\| What is Hepatitis C?
Hepatitis C is caused by a virus. The hepatitis C virus (HCV) can cause damage to the liver. HCV testing is recommended for anyone who is HIV-positive. About 33% of all people with HIV also have HCV. Keeping an HIV+ person's liver healthy increases their ability to tolerate HIV medication. Keeping a person's HIV under control may also help to slow HCV disease progression. HCV disease appears to progress more quickly in people with HIV disease. HCV can cause serious liver disease, including liver failure, in people with or without HIV.
\|\|\|\|\| HCV Transmission:
HCV is transmitted mainly by blood-to-blood contact, although it may be transmitted through unsafe sex. Most people have no idea that they have been infected with HCV, although millions of people worldwide are HCV-positive. Many people do not know how they became infected with HCV when they find out. Some people became infected with HCV through blood products or blood transfusions. The blood supply in the United States has been screened for HCV since 1992. A person can become infected with HCV by using needles and other contaminated injection equipment. HCV infection is an ongoing risk for health care providers, police and firefighters, and correctional officers. It is also possible, but rare, for a mother to transmit HCV to her unborn child during delivery. HCV is also sometimes transmitted during sex, especially those acts that involve contact with blood. HCV is more likely to be transmitted through sex if the other person's HCV viral load is high. Sharing razors, manicure equipment, toothbrushes, and any other personal care items with blood on them is another possible route of transmission. Body piercing or tattooing with unsterilized equipment or shared inkwells and needles can spread HCV. About 1 out of 6 people infected with HCV will clear the infection. No virus can be found in their blood. For most people, however, HCV becomes a chronic disease. Some people will never have any symptoms, and won't develop serious liver damage from HCV. Other people will slowly develop liver damage 10 to 30 years after infection. About half the people infected with HCV won't develop serious liver damage during their lifetime. Some people will develop fibrosis (mild to moderate scarring of liver tissue). 1 in 5 people with chronic HCV will develop cirrhosis (serious scarring of the liver, which interferes with the liver's ability to do its job). A small group of people (about 1% to 4%) with HCV will develop liver cancer and/or liver failure as a result of HCV. A liver transplant is the only treatment for liver failure. It is recommended that people who are HIV positive get tested for HCV. People who are co-infected with HIV and HCV are more likely to develop cirrhosis and/or fibrosis. People with HIV sometimes falsely test negative for HCV, so routine screening is suggested on a regular basis.
\|\|\|\|\| Symptoms of HCV:
3 out of 4 people don't have any symptoms when first infected with HCV. Initial symptoms can include: fatigue, nausea, loss of appetite, low fever, stiff and aching joints, jaundice (yellowing of the eyes and skin), dark brown urine, pale feces and liver pain (on the right side of the body, under the ribcage). Later symptoms of liver damage caused by HCV can include jaundice, fatigue, itchiness, mood alterations, depression, forgetfulness and liver pain.
\|\|\|\|\| Diagnostic testing:
HCV antibodies will appear by 12 weeks after infection. Follow-up testing such as a RIBA or qualitative viral load test is recommended to confirm HCV infection. HCV viral load results are usually much higher than HIV viral load test results. HCV viral load results range from undetectable to millions of copies. The HCV viral load is usually used to monitor the success of treatment. In people who are HIV infected, antibodies my take longer to develop, sometimes months.
\|\|\|\|\| Monitoring Disease Progression:
Ultrasound/sonogram testing is a non-invasive test that uses sound waves to identify liver abnormalities. Usually, a total abdomen scan is done to see if liver damage is affecting other organs such as the pancreas, gall bladder or the spleen. Blood tests, including measurements of liver enzyme levels, as well as HCV viral load testing are also used to determine how well your liver is working. These tests, however, can't predict if, or when serious liver disease will develop. A liver biopsy, a procedure where a thin needle is inserted between the ribs into the liver to remove a small tissue sample, is the only way to determine the actual condition of the liver itself. When done properly, a liver biopsy takes a few minutes to perform, and leaves only a pencil point scar. The liver is responsible for many things, including processing drugs, herbs and body chemicals, clearing toxic substances from the bloodstream, and turning food into energy. The liver has to stay in good working order for the body to function. Some HIV treatments are harder for the liver to tolerate than others. Certain HIV medications, as well as drugs used for other purposes, should be avoided by people with hepatitis. There are at least 6 different types, or genotypes, of HCV. The most common genotypes in the US are 1a and 1b. Some people have type 2, 3 or 4. It appears that the hardest types of HCV to treat are types 1 and 4. Types 2 and 3 are easier to treat, although the same treatments are used for all genotypes. Regardless of your genotype, treatment must be used for at least 6 months before it can really said to be effective. Most people will take treatment for a year, especially people co-infected with HIV, as well as people with genotypes 1 and 4. Some researchers believe that 18 months of treatment is needed for people who are HIV/HCV co-infected.
\|\|\|\|\| HCV Treatment Decisions:
The results of blood tests, and other procedures you may have had done ( liver biopsy or ultrasound, for example) can help you decide whether you need to start HCV treatment. Deciding when to start treatment is a difficult choice. HCV treatment may be easier to tolerate for people with higher CD4 counts, and people who are in better general health. There are things that people with HCV can do to stay healthy regardless of whether they decide to start treatment. Many people experience fatigue, depression and, occasionally, more severe side effects when they start HCV treatment. The symptoms of untreated HCV disease can sometimes be severe as well. Symptoms of HCV disease may also improve with treatment.
\|\|\|\|\| HCV Treatments:
A combination of ribavirin and a Pegylated interferon is now the standard treatment for HCV. There are two FDA approved pegylated interferons, Peg-Intron and Pegasys. Pegylated interferon is taken as an injection under the skin once a week. Ribavirin is a nucleoside analog like AZT or ddI. It is a pill. The pills are taken twice a day. Studies have shown that after 48 weeks of combination treatment, some people can get rid of HCV (undetectable HCV viral load). Successful treatment is called a Sustained Virologic Response (SVR), meaning that the HCV is no longer detectable in blood tests for at least 5 months after the 48-week treatment. SVR depends on many different factors, including HIV co-infection, HCV genotype, and the person's age, gender, race, and the condition of his/her liver. The treatment outcome ranges from 89% SVR for someone mono-infected (no HIV infection), relatively healthy with genotypes 2 or 3, to a disapointing 30% SVR for someone co-infected (with HIV), with advanced liver fibrosis, or with HCV genotype 1. However, even if the treatment doesn't wipe out the virus, it can sometimes help improve the condition of the liver. Studies have shown that people who do not respond to treatment in the first 12-week period, by showing a reduction in liver enzymes or at least a 2_log drop in HCV viral load, are unlikely to benefit from continued treatment. It is very important to be fully aware of what side effects might occur and how they can be managed, before you begin treatment. This reduces the chance you will stop treatment before completing the very crucial 12-week starting period.
\|\|\|\|\| The Side Effects:
The most common side effects of pegylated interferon include: a decrease in white blood cells and platelets, anemia, nausea, diarrhea, fever, chills, muscle and joint pain, difficulty in concentrating, thyroid dysfunction, hair loss, sleeplessness, irritability, mild to serious depression, and rarely, suicidal thoughts. Other serious adverse events include bone marrow toxicity, cardiovascular disorders, hypersensitivity, endocrine disorders, pulmonary disorders, colitis, pancreatitis, and ophthalmologic disorders (eye and vision problems). Pegylated interferon may also cause or make worse fatal or life-threatening neuropsychiatric, autoimmune, ischemic, and infectious disorders. If you decide to go on treatment, your doctor should monitor you closely with periodic clinical and laboratory tests. Patients with persistently severe or worsening signs or symptoms of these conditions should stop therapy. In many, but not all cases, these disorders resolve after stopping therapy. Side effects of ribavirin include nausea and anemia. Anemia caused by ribavirin is usually easily treatable. Ribavirin can also cause birth defects (See warning!). Ribavirin should not be taken with the HIV drug ddI (didanosine, Videx, Videx EC), as lactic acidosis with fatal hepatic steatosis (fatty liver) has occurred. This may be more prevalent in people who are co-infected. It is very important to inform your doctor and liver specialist of any symptoms you experience.
\|\|\|\|\| Ribavirin/pregnancy warning:
Ribavirin can cause severe birth defects. Women and men who that take ribavirin should not plan a pregnancy for six months after stopping, because ribavirin stays in the body for a long time.
\|\|\|\|\| Paying For Treatment:
The drugs used to treat HCV are expensive. Make sure to discuss how you will be able to pay for your HCV and HIV treatments and the associated care with your case manager before starting. A case manager can also help you throughout the treatment process. The Network can also provide you with information on what treatments and services are covered by your state ADAP or Medicaid Program. Contact The Network at 212-260-8868 or 800-734-7104. Schering-Plough, The maker of Peg-Intron, Rebetol, and Rebetron, has a "COMMITMENT TO CARE" reimbursement assistance program. Call 1-800-521-7157 to enroll. Hoffmann-La Roche, The maker of Pegasys, also has a patient assistance program, Call 1-877- PEGASYS to enroll.