Hepatatis C Virus (HCV)
Questions & Answers
Information and advice is not intended to be used in place of professional
medical advice. Ask your doctor before acting on any advice to
be sure it's right for your particular health situation.
How Do You Find Out If You Have It
If I Test Positive, What Happens Next
Q: What is Hepatitic C?A: Hepatitic C is a virus that causes liver disease. HCV is spread by contact with the blood of an infected person. HCV is this country's most common blood-borne disease, infecting at least 2 out of every 100 people.
Q: Who should get tested for Hepatitic C?
A:
- People who received a blood transfusion or solid organ transplant before July 1992
- People who were notified that they received blood from a donor who later tested positive for Hepatitic C
- People who were treated for clotting problems with a blood product made before 1987
- People who were on long-term kidney dialysis
- People who ever shared drug injection equipment, including those who injected just once or a few times many years ago
- People who have signs or symptoms of liver disease (e.g., fatigue, abnormal liver enzyme tests - or previous "unclear" history of hepatitis infection)
- Health-care workers who had frequent contact with blood or had a needle-stick, puncture, or eye splash involving blood or body fluid
- Children born to HCV-positive women after they're one year old
- People who served in the armed forces, particularly Vietnam veterans
- People who served time in local, state, or federal prison
- Long-term sex partners of HCV+ persons
- People who have a lifestyle history that includes tattooing; body piercing; intranasal drug use; unprotected sex with multiple partners, sexually transmitted diseases, or infection with HBV or HIV
Q: What happens to people infected with Hepatitic C?A: Of every 100 persons infected with HCV about:
- 85 persons may develop long-term infection.
- Of those 85 ... 70 persons may develop chronic liver disease, and
- 15 persons may develop cirrhosis over a period of 20 to 30 years.
- Of the 15 ... 5 persons may die from the consequences of long term infection (liver cancer or cirrhosis).
Q: What can persons with HCV infection do to protect their liver?
A:
- Stop drinking alcohol and don't use street drugs.
- See your doctor regularly.
- Don't begin taking any new medicines or using over-the-counter, herbal, and other preparations without a physician's knowledge.
- Get vaccinated against Hepatitis A and B
Q: Are there other medical conditions associated with Hepatitic C?A: A small percentage of persons with chronic Hepatitic C develop medical conditions outside the liver (this is called extra hepatic). These conditions are thought to occur because of to the body's natural immune system fighting against itself
Q: How is HCV spread from one person to another?A: HCV is spread primarily by direct contact with human blood. For example, you may have gotten infected with HCV if:
- you received blood, blood products, or solid organs from a donor whose blood contained HCV
- you were ever on long-term kidney dialysis as you may have unknowingly shared supplies/equipment that had someone else's blood on them
- you ever injected street drugs, as the needles and/or other drug "works" used to prepare or inject the drug(s) may have had someone else's blood that contained HCV on them
- you ever shared straws to snort drugs
- you ever had unprotected penetrative sex with a person infected with HCV
- you were ever a health-care worker and had frequent contact with blood on the job, especially accidental needle-sticks
- your mother had Hepatitic C at the time she gave birth to you - during the birth, her blood may have gotten into your body
- you were a low-birth weight or premature baby and received blood transfusions as an infant
- you lived with someone who was infected with HCV and shared items such as razors or toothbrushes that might have had his/her blood on them
- you had a tattoo or body piercing with improperly sterilized tools or tattooing with inks that were used on someone else
Q: Can HCV be spread by sexual activity?A: Yes, but this does not occur very often. The risk of HCV transmission in long-term sexually monogamous partners is low but present - about 4%. HCV transmission in high-risk sex practices (unprotected sex with multiple partners, men who have sex with men, history of sexually transmitted diseases) -can elevate the risk as high as 20%.
In long-term sexually monogamous partners, the CDC does not recommend the use of barrier precautions.
Women should avoid intercourse during their menstrual cycle.
Q: Can HCV be spread by oral sex?A: There is no evidence that HCV has been spread by oral sex.
Q: Can HCV be spread within a household?A: Yes, but this does not occur very often. If HCV is spread within a household, it is most likely due to direct exposure to the blood of an infected household member. People with HCV should not share their personal care items, such as toothbrushes, razors, or manicure tools with others.
Q: Is there any evidence that HCV has been spread during medical or dental procedures done in the United States?A: Medical and dental procedures done in most settings in the United States do not pose a risk for the spread of HCV. There have, however, been studies that demonstrate HCV transmission between patients in kidney dialysis units where supplies or equipment may have been shared between patients, and through contaminated endoscopy equipment. The risk of transmission of HCV during a medical or dental procedure relies directly on the infection control practices of individuals within the medical or dental facility.
Q: What is the risk that HCV-infected women will spread HCV to their newborn infants?
A: About 5 of every 100 infants born to HCV-infected women become infected. (The infection rate is higher, about 17 of 100, for infants born to HCV-infected women who are also infected with HIV.)
This occurs at the time of birth, and there is no treatment that can prevent it from happening. Most infants infected with HCV at the time of birth have no symptoms and do well during childhood.
More studies are needed to find out if these children will have problems from the infection as they grow older. There are no licensed treatments or guidelines for the treatment of infants or children infected with HCV. Children with elevated ALT (liver enzyme) levels should be referred for evaluation to a specialist familiar with the management of HCV-related disease in children.
Q: Should a woman with Hepatitic C be advised against breast-feeding?A: No. There is no evidence that breast-feeding spreads HCV. HCV-positive mothers should consider abstaining from breast-feeding if their nipples are cracked or bleeding.
Q: Can persons become infected with different strains of HCV?A: Yes. Because of the ineffective immune response described above, prior infection does not protect against reinfection with the same or different genotypes of the virus. For the same reason, there is no effective pre- or postexposure prophylaxis (i.e., immune globulin) available.
Q: How can persons infected with HCV prevent spreading it to others?A: Do not donate blood, body organs, other tissue, or semen. Do not share personal items that might have your blood on them, such as toothbrushes, dental appliances, nail-grooming equipment or razors. Cover your cuts and skin sores to keep from spreading HCV. Properly dispose of bloody items (such as sanitary products) and make sure bedding, towels, or clothing with blood on them are not handled by others in the household.
How Do You Find Out If You Have It?
Q: What blood tests are available to check for Hepatitic C?A: There are several blood tests that can be done to determine if you have been infected with HCV. Your doctor may order just one or a combination of these tests. The following are the types of tests your doctor may order and the purpose for each.
Anti-HCV (antibody to HCV)
EIA (enzyme immunoassay)
This test is usually done first. If positive, it should be confirmed.RIBA (recombinant immunoblot assay)
A supplemental test used to confirm a positive EIA test. Neither EIA nor RIBA can tell whether the infection is new (acute), chronic (long-term) or is no longer present (past infection).Qualitative test to detect presence or absence of virus (HCV RNA)
Called "PCR". This is a very sensitive test that can measure small amounts of virus in the blood sample. The results are reported as either "positive" or "negative". A single positive qualitative PCR test indicates infection with HCV. However, a single negative test does not prove that a person is not infected. Virus may be under the detectable limit.Quantitative test to detect amount (titer) of virus (HCV RNA)
Quantitative PCR measures the amount of virus in the bloodstream (viral load) and is used both before and during drug therapy to determine if the treatment is effective.
Q: How long after exposure to HCV does it take to test positive for anti-HCV?
A: Antibodies to the Hepatitic C virus can take from 12 weeks - to 6 months to develop after the initial exposure. HCV RNA can be found in the bloodstream as early as 1 - 2 weeks after initial exposure. The HCV RNA can be measured by qualitative PCR. This testing method would be recommended if the person was directly exposed (through a blood-to-blood contact) to a known HCV+ source.
Q: Can you have a "false-negative" anti-HCV test result?
A: Yes. People with early infection may not have developed antibody levels high enough for the test to measure.
In addition, some persons may lack the (immune) response necessary for the test to work well. This includes people with HIV and people who have had organ transplants (due to immune suppression drugs).
In these persons, PCR testing may be considered.
Q: Can you have a "false-positive" anti-HCV test result?A: Yes. A false-positive test means the test looks as if it is positive, but it is really negative. This happens more often among people who have a low risk for the disease for which they are being tested.
For example, false-positive anti-HCV tests happen more often among persons such as blood donors who are at low risk for Hepatitic C. Therefore, it is important to confirm a positive anti-HCV test with a supplemental test in persons at low risk for exposure to the Hepatitic C virus.
Q: Can you have a normal liver enzyme (e.g., ALT) level and still have chronic Hepatitic C?A: Yes. It is common for persons with chronic Hepatitic C to have a liver enzyme level that goes up and down, with periodic returns to normal or near normal. Some persons have a liver enzyme level that is normal for over a year but they still have chronic liver disease. If the liver enzyme level is normal, persons should have their enzyme level re-checked several times over a 6 to 12 month period. If the liver enzyme level remains normal, your doctor may check it less frequently, such as once a year.
Q: Should pregnant women be routinely tested for anti-HCV?A: No. Pregnant women have no greater risk of being infected with HCV then non-pregnant women. If pregnant women have risk factors for Hepatitic C, they should be tested for anti-HCV.
Q: When should babies born to mothers with Hepatitic C be tested to see if they were infected at birth?A: Children should not be tested for anti-HCV before 12 months of age because anti-HCV from the mother may last until this age. If testing is desired prior to 12 months of age, PCR could be performed at or after an infant's first well-child visit at age 1-2 months.
If I Test Positive, What Happens Next?
Q: What are the confirmatory blood tests?A: A positive Hepatitic C antibody test indicates that you've been EXPOSED to the Hepatitic C virus, but doesn't tell you whether or not you STILL HAVE the virus in your system. There are additional tests that need to be done to determine whether you have chronic Hepatitic C and to what extent your liver may be damaged.
HCV-EIA/ELISA/anti-HCV. This test is used to detect the presence of Hepatitic C antibodies in your blood. It doesn't tell whether you have a current / ongoing infection or not. Additional tests are indicated to CONFIRM your Hepatitic C diagnosis.
RIBA. This test is used to confirm the results of the HCV-EIA, especially in people with anti-HCV+ results who are considered low-risk.
HCV RNA. PCR Qualitative: This test detects the presence or absence of Hepatitic C virus in your blood. This test is most often used during initial diagnosis process to confirm a positive HCV-EIA test.
HCV RNA. PCR Quantitative: This test measures the amount of viral particles in a specific sample of your blood. The result is often called a VIRAL LOAD, and is used most often in monitoring the effects of anti-viral drug therapy. Your viral load can be read in the millions, so don't be alarmed.
Q: What are liver enzymes and liver function tests?A: ALT and AST. ALT and AST are enzymes that are located in liver cells, which leak out and make their way into the general circulation when liver cells are injured. An elevation of these enzymes means that liver inflammation and cell injury is present, but is not an indicator of how well your liver is working. The ALT is a more specific indicator of liver inflammation, since the AST can be elevated in disease of other organs such as heart or muscle disease. As many as 30% of people with chronic Hepatitic C have NORMAL or intermittently normal ALT's but can have slowly progressive liver damage.
GGT and ALKALINE PHOSPHATASE. GGT and Alkaline Phosphatase are elevated in a large number of disorders that affect the drainage of bile; such as a gallstone or tumor blocking the common bile duct, drug induced hepatitis, or alcoholic liver disease. Both the GGT and Alkaline Phosphatase can be elevated due to other diseases, but mild or moderate elevation of GGT with a normal Alkaline Phosphatase, is often caused by changes in the liver cell enzymes induced by alcohol or medications.
BILIRUBIN, ALBUMIN, PLATELETS, PROTHROMBIN TIME, COMPLETE BLOOD COUNT. These are your TRUE liver function tests. Changes to these tests indicate that your liver is not working properly. When these results become abnormal, it's likely that you have scarring of your liver tissue and possibly the early stages of cirrhosis.
Q: What does the term genotype mean?A: Genotype refers to the genetic make-up of an organism or a virus. There are at least six distinct HCV genotypes identified, and > 90 subtypes. Genotype 1 is the most common genotype seen in the United States, and is generally the least responsive to drug therapy.
Q: Is it necessary to do genotyping when managing a person with chronic Hepatitic C?A: Yes, if considering interferon therapy. Studies show that people with genotype 1 benefit from 12 months of combination interferon/ribavirin treatment (instead of the FDA approved 6 months of treatment), or higher doses of consensus interferon for 12 months.
Q: What's a liver biopsy for?A: A liver biopsy is the removal of a small piece of liver tissue for examination under a microscope. This test is the benchmark test for determining the amount of damage the Hepatitic C virus caused to your liver. A liver biopsy IS an invasive procedure and carries a small risk of complications that your physician will discuss with you. The procedure itself is performed most often in an outpatient setting, usually by a radiologist using ultrasound guidance to locate the liver.
After the biopsy site is located, a shot similar to Novocain (like your dentist uses) is administered to numb the needle insertion site. A small incision is made and a special needle is quickly inserted into your liver and a sample of liver tissue is withdrawn. This tissue is sent to a laboratory to be viewed by a pathologist under a microscope. The results are "graded" based on a scale that measures both inflammation and scarring.
A liver biopsy can (although infrequently) be uncomfortable or even painful. The positive side is that it's over very quickly. If you're concerned about pain: request that you be pre-medicated for the procedure. Some practitioners insist the procedure cannot be done under medication; but our area's leading hepatologists routinely pre-medicate their biopsy patients with a mild sedative or Demerol/Versed drug combination.
After the liver biopsy is done, you'll be asked to remain in the hospital or procedure room for at least 4 - 8 hours for monitoring. It's standard procedure to be asked to lay on your right side for a few hours to put pressure on the biopsy site and prevent internal bleeding. Most people are able to return to work the next day and can fully resume all physical activities within 4 to 7 days. Once you have your biopsy results in hand - you and your doctor can make informed decisions about your health.
Q: What's an ultrasound for?
A: An ultrasound examination of the abdomen is a common diagnostic procedure that most physicians order. An abdominal ultrasound is used to detect liver tumors and/or masses, and provides information about your liver, gallbladder, and biliary architecture, as well as the pressure of blood flow through your liver.
The ultrasound exam uses sound waves (like sonar) to view your liver and surrounding organs. A clear gel is applied to your upper right abdomen and a paddle that produces sound waves is passed over the area on the outside of your skin. The procedure itself is painless and is performed on an outpatient basis. An ultrasound DOES NOT show whether there's inflammation, fibrosis (scarring), or cirrhosis (scarring with the formation of nodules) present. That's where a liver biopsy comes in.
Q: What is the treatment for chronic Hepatitic C?
A: Anti-viral treatment is available for chronic Hepatitic C. The drug is called interferon, and is a self-administered injection. Interferon is often prescribed in combination with a oral medication called ribavirin.
The treatment may be effective in eliminating the Hepatitic C virus from the bloodstream in about 2 - 6 of every 10 people who complete a course of therapy. There are several predictive factors to achieving both an initial and a long-term response to anti-viral treatment:
- Low pre-treatment viral load (less than 2 million)
- Genotype - not 1
- Under 40 years of age
- Female
- Mild liver inflammation
Specific populations are not considered candidates for treatment with interferon or interferon/ribavirin:
- People with autoimmune disease
- Pregnant women
- People with heart problems (w/ribavirin)
- People with low platelets (w/ribavirin)
- People with decompensated cirrhosis
- People who have had organ transplants
- People under 18 years old (interferon not FDA approved for this age group)
- People who have (or had) mental illness/depression (not always full exclusion - may be able to treat w/collaboration between psychiatrist AND physician for appropriate medication and monitoring)
- People who are still using/abusing alcohol and street drugs
- People with persistently NORMAL ALT's (NIH, 1997- This recommendation is currently being reviewed)
Q: What are the side effects of interferon therapy?A: Most people have flu-like symptoms (fever, chills, headache, muscle and joint aches, fast heart rate) early in treatment, but these lessen with continued treatment. Later side effects may include tiredness, hair loss, low blood count, trouble with thinking, moodiness, and depression. Severe side effects are rare (seen in fewer than 2 of 100 persons). These effects include thyroid disease, depression with suicidal thoughts, seizures, acute heart or kidney failure, eye and lung problems, hearing loss, and blood infection. Interferon dosage must be reduced in as many as 40 of 100 people because of the severity of side effects, and treatment must be stopped in as many as 15 of 100 persons. Pregnant women should not be treated with interferon.
Q: What are the side effects of combination (ribavirin and interferon) treatment?A: In addition to the side effects due to interferon described above, ribavirin can cause serious anemia (low red blood cell count) and can be a serious problem for people with conditions that cause anemia, such as kidney failure. In these people, combination therapy should be avoided or attempts should be made to correct the anemia. Anemia caused by ribavirin can be life-threatening for persons with certain types of heart or blood vessel disease. Ribavirin causes birth defects, and pregnancy should be avoided during treatment. Patients and their health-care providers should carefully review the product manufacturer's information before treatment.
Q: Why treat now?A: What a rational question! If current drug therapy with interferon or interferon/ribavirin sounds less than inviting, take a moment to consider the alternative: cirrhosis and end stage liver disease.
Avoiding progression of liver disease (cirrhosis) is essential to maintaining your overall health and well being. People with mild liver inflammation (remember the biopsy section?) - may choose to put off treatment NOW, take very good care of their health, and wait for the development and FDA approval of new drug therapies. People with moderate liver inflammation and scarring (fibrosis or cirrhosis) may need to take a more aggressive approach and consider treatment now in order to slow the progression of damage to the liver until other (new) treatments are discovered, tested, and approved.
Q: What about herbs?A: Complementary therapy (herbs, immune system support, acupuncture, therapeutic touch, homeopathy, etc.) has potential to alleviate symptoms and sustain liver health. Use with other approaches to lifestyle management: nutrition, exercise, etc. Make sure you advise your physician of any prescription or over-the-counter preparations you're taking.
Q: Are there herbs that can hurt/harm the liver?A: Yes. These herbs are not liver friendly, or are known to be toxic:
- Lycopodium serratum, Jin Bu Huan (chinese name)
- Teucrium chamaedrys,Germander
- Scutelleria
- Skullcap
- Stephania
- Corydalis
- Senecio longilobus,Groundsel
- Symphytum,Comfrey
- Valerian
- Asfetida
- Hops
- Gentian
- Mistletoe
- Margosa oil
- Mate tea
- Gordolobo yerba tea
- Pennyroyal (squawmint) oil
- Chaparral (creoosote bush, greasewood)
Q: What about clinical trials?
A: Although there's a significant amount of research underway to find new treatments for Hepatitic C - all drugs must go through rigorous testing in a clinical trial setting before they become available to the public. Many people enroll as "test subjects" in clinical trials so they can have access to the newest and most advanced treatments available.
Consider your ethical standards before you enroll in a clinical drug trial. In some drug trials, patients are randomly assigned to groups which may receive a placebo (fake drug) or reduced dose, which may not be effective, and you won't know what group you're in until after the study is over. Regardless, you DO have a responsibility to follow the study protocol to the letter in order for the data gathered to be valid and useful for all people with hep-C.
To find out if there are any clinical drug trials being offered in your area, contact the hepatology or gastroenterology departments of nearby teaching hospitals, ask your physician, or contact one of your local hepatitis advocacy/support organizations.
Q: What other information should patients with Hepatitic C be aware of?A: HCV is not spread by sneezing, hugging, coughing, food or water, sharing eating utensils or drinking glasses, or casual contact. People with HCV should not be excluded from work, school, play, child-care, or other settings on the basis of their HCV infection status. Involvement with a support group may help people cope with Hepatitic C.
Q: Should persons with chronic Hepatitic C be vaccinated against hepatitis B?A: If persons are in risk groups for whom hepatitis B vaccine is recommended, they should be vaccinated. Your local health department or doctor can tell you if you should get hepatitis B vaccine.
Q: Should HCV-infected health-care workers be restricted in their work?A: No, there are no recommendations to restrict a health-care worker who is infected with HCV. The risk of transmission from an infected health-care worker to a patient appears to be very low. As recommended for all health-care workers, those who are HCV positive should follow strict aseptic technique and standard precautions, including appropriate use of hand washing, protective barriers, and care in the use and disposal of needles and other sharp instruments.
Q: What are some coping and helping tips for friends and family?A: Remember:
- Don't forget your sense of humour.
- No one is to blame.
- It can be as hard for you to accept the illness, as it is for the ill friend/family member.
- It's not OK for you to be neglected. You have needs and wants too.
- You may learn something about yourself as you learn about a friend/family member's journey through illness.
- You cannot cure your friend/family member. You cannot control what is going on.
- If you feel much resentment, you're giving (or asking) too much.
- The illness of a friend/family member is nothing to be ashamed of. Reality is; you may encounter discrimination from an apprehensive public.
- Relationships may be in disarray in the confusion around the disease. It may be necessary to renegotiate the way things have been done in your relationship, both emotionally and physically.
- It may be necessary to revise your expectations, but recognizing that a person has limited capabilities should not mean that you expect nothing of them.
- You may experience grief issues about what you had and lost, or about what you never had.
Q: What about my employer?A: In the U.S.A., The Americans with Disabilities Act (ADA) covers all but the smallest employers, and protects people with Hepatitic C from employment discrimination. The ADA's definition of disability includes specific wording which protects otherwise skilled and qualified individuals whose impairments do not in fact, substantially limit their functioning, but would nevertheless limit that person's ability to work as a result of the negative reactions of others to the impairment."
Legally, employment decisions may not be based on speculations that an employee may become incapable of performing their job in the future, or that a worker with Hepatitic C always poses a direct threat to the health and safety of others. Employers are required by the ADA to base their decisions on current medically accepted fact when assessing the worker's ability to perform the essential functions of the job.
According to the CDC's most recent report; there are no recommendations to exclude people with Hepatitic C from any employment, school, or social situation (this includes healthcare workers as well). The reality is that even with the protection of the ADA, you may experience subtle or covert forms of discrimination that influence hiring and promotion opportunities.
If you can demonstrate that your employer made an employment decision based on a perception of disability based on myth, fear, or stereotype; you're protected by the ADA and should seek legal counsel to advise you of your rights under the law.
Q: What if I don't have health insurance?A: You can still take control of certain behaviors that will improve your liver health. You can contact your local community health center for medical attention. You can contact a social service bureau in your city to find out about various assistance programs.
Q: Who do I tell?A: The word "hepatitis" often provokes a strong negative response from family, friends, bosses and co-workers who are uneducated about the various forms of hepatitis. Some people may react by "backing up" when they find out that you have chronic Hepatitic C - so don't be surprised or hurt if that happens. It's a very primal survival response that has nothing to do with you or who you are.
Simply explain that your form of hepatitis - Hepatitic C - is transmitted ONLY through direct contact with contaminated blood and that you've probably had this infection for a very long time. Let them know that you're not putting them at risk through normal social contact, and if necessary, provide them literature that supports what you're saying.
You'll find that most people will be able to absorb and "intellectualize" the information you give them and will overcome their initial reaction. Always remember that their reactions are not about YOU as a human being, it's about THEIR fear of the unknown.
Last updated Feb. 26, 2004
© 1999 - 2005 by Barbara Anello
