HepC-Questions/Answers

Questions and Answers

1) What Does The Liver Do?
The liver:

Stores iron reserves, as well as vitamins and minerals
Makes bile to help digest food
Detoxifies poisonous chemicals, including alcohol, beer, wine, and drugs - prescribed and over-the-counter as well as illegal substances. Acts as a filter to convert them to substances that can be used or excreted from the body
Converts food we eat into stored energy, and chemicals necessary for life and growth
Makes your blood
Manufactures new proteins
Makes clotting factors to help blood clot
Removes poisons from the air, exhaust, smoke and chemicals we breathe.
Manufactures and exports important body chemicals used by the body. One of these is bile, a greenish-yellow substance essential for the digestion of fats in the small intestine.

2) What is Hepatitis?
Hepatitis is an inflammation of the liver. "Hepato" is Greek for "liver," and "itis" means "inflammation." The different types of hepatitis are caused by different things, but they all produce inflammation of the liver. Viral hepatitis refers to several common contagious diseases caused by viruses that attack the liver. The most important types of viral hepatitis are hepatitis A, hepatitis B, and hepatitis C. Newly discovered forms of viral hepatitis also include hepatitis D, E, and G. Non-viral forms of hepatitis can be caused by toxic agents (drugs or chemicals), alcohol, or autoimmune processes. Another form of hepatitis is toxic hepatitis. Toxic hepatitis can be caused by viruses or by liver damage due to toxic substances. Toxic hepatitis is a deterioration of the liver cells caused by chemicals, alcohol, drugs, and industrial compounds. Alcohol abuse is a common cause of toxic liver damage. Hepatitis C Virus (HCV) is a form of hepatitis caused by an RNA virus of the Flaviviridae family that targets the liver. HCV accounts for the majority of the hepatitis cases previously referred to as non-A, non-B hepatitis, and is responsible for 150,000 to 250,000 new cases of hepatitis each year. The virus, which typically has a six to nine-month incubation period, presents symptoms such as: fatigue, nausea, loss of appetite, dark urine, and jaundice; and if left untreated can lead to liver cancer and death. According to a recent report by a committee sponsored by the National Institutes of Health, nearly four million individuals in the U.S. are infected with HCV. The report also noted that treatment of the disease with current drugs is disappointing and estimated that the number of U.S. deaths caused by HCV will triple in the next 10-20 years.

3) How is HCV Diagnosed?
While the newer HCV antibody tests are better; false positive results still occur, and further testing should be used to confirm the antibody test. Abnormal liver function tests (LFTs) suggest chronic disease, but there is no correlation between the level of the liver function tests and how severe the disease is. A liver biopsy is the best way to identify liver inflammation or early cirrhosis. Before 1990 doctors could diagnose HCV only by ruling out other possibilities (thus the old name for HCV "non-A, non-B hepatitis). Hepatitis C antibodies may not develop for two to six months after infection, so only two-thirds of patients who go to the doctor with possible hepatitis C infection can be diagnosed with blood tests. Diagnosis may have to exclude other possible causes such as HAV, HBV, cytomegalovirus, Epstein-Barre virus infection, as well as nonviral liver problems such as fatty liver, or alcohol or drug-related diseases. Follow-up blood tests are very important in order to determine if the disease has become chronic. The blood tests for antibodies are usually repeated three and six months after the original illness. Diagnosis is most commonly made after detecting an antibody to a portion of HCV in the blood. This indicates that the person was exposed to the virus and that their immune system made an antibody. The test can show false positive reactions and therefore confirmation is necessary by finding evidence that the Hepatitis C virus is actually in the blood using the polymerase chain reaction (PCR), an extremely sensitive test for viral RNA.

4) What Does HepC Do to the Body?
When someone catches the hepatitis C virus, their body produces antibodies to try to destroy it. More often than not, the antibodies fail to identify the hepatitis C virus properly. The infection then remains long-term. Most infected people don't know they have the virus. This is because for some people there will be no symptoms and for others, symptoms may take an average 13 years to develop. Some people may have hepatitis C for 20 years or more before finding out. The way that hepatitis affects people is different for different people. Some are not affected by the condition, but others are affected very badly.
It currently seems that if 100 people catch hepatitis C:

15-20 people will get rid of it within 2-6 months (much like we get rid of a flu virus)
60 people will have a long-term infection that may cause no problems or may cause levels of liver damage ranging from mild to serious.
20-25 people will have a long-term infection that leads to serious liver damage after 20 years. Of these people, 10-15 will remain stable and the other 10 will progress to liver failure or liver cancer after another 5-10 years.

Hepatitis C infection doesn't always make people sick. When someone does get sick, symptoms take a long time to develop (approximately 13 years). Symptoms often stay at a certain level and don't always get worse. They can come and go with no real pattern. Some people with chronic infection don't have any noticeable liver damage or symptoms. These people remain well, but *they are infectious and should take care to reduce any risk of transmitting the virus to others.*
** Data on the clinical course of HCV is limited because the onset of infection often goes unrecognized, and the early course of the disease is indolent and protracted in many individuals. Prospective cohort studies are few, typically small, include relatively few subjects whose date of infection can be well documented, (e.g. blood transfusion recipients and victims of accidental needle sticks), and have relatively short followup. The natural history of disease appears to differ according to geography, alcohol use, virus characteristics, (e.g., genotype, viral load), coinfection with other viruses, and other unexplained factors. - National Institutes of Health Statement on Hepatitis C 1997

5) How Do I Find a Good Doctor?
It is very important to find a health practitioner who is familiar with this illness. The symptoms of hepatitis can be mimicked by other illnesses (autoimmune illnesses, cancer, chronic fatigue syndrome, lupus, arthritis, etc.), and if you in fact have another illness that is not properly diagnosed, you may be losing out on getting treatments that might be effective for you. It is still an uphill struggle to find a doctor who is experienced in diagnosing and treating hepatitis C. Hepatologists specialize in diseases of the liver, and would be your best choice in physicians, followed by a gastroenterologist (a digestive disease specialist) or an infectious disease specialist. If there is a hepatitis support group nearby, they would be an excellent source of advice in identifying local doctors who may be familiar with hepatitis, or you can contact the American Liver Foundation (ALF) for a list of doctors near you. The best way to identify local support groups is to contact one of the national organizations. If there are no hepatitis knowledgeable doctors in your area and you wish to find an out-of-town specialist, you may read about such specialists from time to time in the newsletter of one of the national organizations.
If your own doctor is sympathetic but not knowledgeable, you might gather together some medical articles on hepatitis and hepatitis treatments and encourage your doctor to study them.

6) What About Mother-to-Baby Transmission?
Physicians are not very concerned about hepatitis C transmission during birth, and many HCV positive women have given birth to children who were HCV negative. The likelihood of transmission from breast milk is also very small for both HCV and HBV. Physicians do not advise against breastfeeding. Neonatal transfer among women infected with the hepatitis C virus has been reported in 5% of pregnancies, but can be as high as 25% if the mother is also HIV positive. Japanese studies, (where a much more severe HCV genotype is prevalent) showed that only 6% of the babies born to HCV positive mothers contracted hepatitis C. Many showed antibodies at birth, but were clear of the virus by 18 months. This is not the case if the transmission is simultaneous with HIV or HBV infection, of if the mother is infected by multiple strains of hepatitis C virus. Mother-to-baby transmission of HCV may be increased if the mother is also infected with HIV or HBV or has a high titer of HCV in the blood. In the latter circumstance, Japanese researchers have estimated that the risk of transmission can be approximately 10%. If a baby is born to an HCV+ mother and its blood was tested at birth for hepatitis C antibodies, the test would come back positive. This is because the baby has some of its mother's antibodies. These antibodies clear naturally over time. A test at 12 months usually confirms a toddler has the virus.

7) What Does HCV do to Children?
Children with chronic hepatitis cannot be treated simply like miniature adults. Specific issues and questions need to be addressed when dealing with the pediatric age group. Pediatric patients are less likely than adults to have symptoms of infection with hepatitis C, leaving the viruses undetected and possibly unknowingly spread. According to information available on the natural history of HCV, the percentage of children who become chronic and the long-term outcomes are similar to the percentage of adults. Children who are chronic carriers of HCV have normal growth patterns. Liver biopsy appears to be less valuable in children than adults. Chronic hepatitis rarely progresses to cirrhosis in children. In 16 HCV children followed for up to 14 years, encephalopathy (mental confusion), ascites (swollen stomach), or bleeding did not develop. The lack of cirrhosis in children with HCV is consistent that a time period of 10 to 20 years or more is required for cirrhosis to occur. Hepatocellular carcinoma occurs very rarely in the pediatric group. Few studies exist examining interferon use in children with chronic HCV, however a recent study in Hepatology suggests that interferon therapy may be beneficial The rates of initial and long-lasting response were higher in the study than those observed in adults treated with standard schedules. Possible explanations include the shorter time of infection in children, and that most have a mild form of liver disease. The results of this study are encouraging, according to the researchers, but more investigation needs to be conducted. Many questions still remain about chronic hepatitis C in children. Further studies need to be done to determine the disease's course and progress as well as the role of interferon treatment.

8) What About Accidental Needle-Sticks? (Health Care Workers, EMTs)
Because there is no effective neutralizing antibody or vaccine for preventing hepatitis C virus (HCV) transmission, HCV can be transmitted to health care workers through accidental needlesticks. In a study reported in the journal Clinical Infectious Diseases, after the clinical onset of acute hepatitis, two health care workers who had sustained accidental needlesticks were treated with interferon (total dose, similar to 300 megaunits). Neither individual developed chronic hepatitis. This finding raises the possibility that treatment with low-dose interferon following an accidental needlestick may be beneficial, even when it is started after the clinical onset of hepatitis. - "Early Therapy with Interferon for Acute Hepatitis C Acquired Through a Needlestick." Clinical Infectious Diseases, May 1997;24(5):992-994.

9) Should I Tell Others I Have HCV?
If you have hepatitis C, you are under no legal obligation to tell others. It is up to you to decide whether to tell anyone of your hepatitis C status. Some people, (and unfortunately some health care providers also) may have judgmental attitudes or unnecessarily exaggerated fears of infection. People should carefully consider who they inform, in light of possible discrimination. How people might have caught the virus is not important. Those who have the hepatitis C virus are covered by anti-discrimination laws.

10) Do I Need Vaccines for other forms of Hepatitis?
Patients with chronic hepatitis C who are at risk for hepatitis B should be offered vaccination during their first contact with healthcare professionals, according to a report from Great Britain's University of Cambridge. ("Prospective Study of Hepatitis B Vaccination in Patients with Chronic Hepatitis C," British Medical Journal, May 25, 1996;312:1336-1337). Chronic hepatitis C (HCV) infection is estimated to occur in between 70- and 92 percent of intravenous drug users. These IV drug users are also at risk for parenterally or sexually transmitted hepatitis B. Coinfection with hepatitis B virus (HBV) may accelerate underlying liver damage due to hepatitis C.
To be on the safe side, anyone with HCV should be vaccinated against HepA as well as HepB.

11) Is HCV Different For Women?
Women can be affected by hepatitis C in a different way from men. This is possibly due to hormonal effects and liver damage.

MENSTRUATION: The hormonal effects of HCV can involve menstrual irregularities, particularly if you are experiencing significant hepatitis C symptoms. It is important that your general health is checked as well as your hepatitis C monitored. Tampons and sanitary napkins should be secured in plastic bags before going into the trash.
BIRTH CONTROL: If you are experiencing significant hepatitis symptoms, using the estrogen-based contraceptive pill may be inadvisable. In these cases, the progesterone-only pill or Depo-Provera may be preferable.
HORMONE REPLACEMENT THERAPY: If you have severe hepatitis symptoms you may need to discuss with your doctor whether hormones should be used for menopausal symptoms. If this is the case, external vaginal creams and skin patches are probably better than pills.

Dysfunctional uterine bleeding and premature menopause, and most any other sort of hormonal aberration is pretty common with chronic liver disease. The liver processes these hormones, and they tend to not get processed properly when the liver is damaged.
While on interferon therapy, many woman find that they come down with one yeast infection after another, due to the immunosuppression. Waste paper products (napkins and tampons) which have been exposed to blood should be securely wrapped and disposed of in a safe manner. A 10% bleach (soak for 30 minutes) should be used on all contaminated surfaces, and in the laundry for clothing and linens which have been exposed to blood. Sexual intercourse during your period is *NOT* safe.

12) What Are Indications of HCV?

Elevated Liver Enzymes
Elevated Alpha-Phetoprotein Levels
Jaundice
Spider Nevi (spidery veins)
Ascites
Portal Hypertension
Varices (Esophageal bleeding veins)
Hepatic Encephalopathy
Cirrhosis

There are two general categories of "liver enzymes." The first group includes the alanine aminotransferase (ALT) and the aspartate aminotransferase (AST), sometimes referred to as the SGPT and SGOT. These are enzymes that are indicators of liver cell damage. The other frequently used liver enzymes are the alkaline phosphatase and gamma-glutamyltranspeptidase (GGT and GGTP) that indicate obstruction to the biliary system, either within the liver or in the larger bile channels outside the liver. The ALT and AST are enzymes that are located in liver cells and leak out and make their way into the general circulation when liver cells are injured. The ALT is thought to be a more specific indicator of liver inflammation, since the AST may be elevated in diseases of other organs such as heart disease or muscle disease. ALT and AST are often used to monitor the course of chronic hepatitis and the response to treatments, such as prednisone and interferon. The alkaline phosphatase and the GGT 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, or alcoholic liver disease or drug-induced hepatitis, blocking the flow of bile in smaller bile channels within the liver. The alkaline phosphatase is also found in other organs, such as bone, placenta, and intestine. For this reason, the GGT is utilized as a supplementary test to be sure that the elevation of
alkaline phosphatase is indeed coming from the liver or the biliary tract. In contrast to the alkaline phosphatase, the GGT tends not to be elevated in diseases of bone, placenta, or intestine. Mild or moderate elevation of GGT in the presence of a normal alkaline phosphatase is difficult to interpret and often caused by changes in the liver cell enzymes induced by alcohol or medications, but without causing injury to the liver.

13) When is Interferon Treatment NOT Suitable?
Patients with chronic hepatitis B or C, with fluid in the abdomen ascites), bleeding from dilated veins in the esophagus (variceal bleeding), or mental confusion (encephalopathy) should be treated only in a clinical trial. Others not suitable for treatment are those with symptomatic heart, lung or kidney disease, with human immunodeficiency virus (HIV) infection or organ transplant recipients on prednisone, cyclosporine and FK-506 and patients on antidepressants or with a history of suicide attempts. Interferon should not be given to women considering pregnancy, nor to the intended father. Patients with active substance abuse (alcohol or illegal drugs) should not be offered this therapy. - "Interferon Treatment for Hepatitis B and C Fact Sheet", American Liver Foundation

14) Can I Work While On Interferon?
Many people are able to continue working while they are being treated with interferon. It may be possible to schedule your shots late in the day or right before the weekend, (or whenever you determine your worst side effects - if any - occur) so they interfere with work as little as possible. If your interferon treatment makes you very tired, you might want to think about adjusting your work schedule for a while. Speak frankly with your employer about your needs and wishes at this time. You may be able to agree on a part-time schedule, or perhaps you can do some of your work at home. Under Federal and state laws, some employers may actually be required to allow you to work a flexible schedule to meet your treatment needs.

15) What is "Breakthrough" and "Non-Response"?
Recombinant interferon alfa (r-IFN alpha 2) has been shown to normalize the aminotransferase levels in approximately 50% of patients with chronic hepatitis C virus (HCV). Few patients experience a relapse during the treatment, in spite of a complete initial response (breakthrough). Continued treatment with r-IFN alpha 2, even at higher doses, did not restore the previous response in any patient. All of them were then switched to natural lymphoblastoid IFN, and this rapidly restored a complete response in all of the patients. - "Breakthrough during recombinant interferon alfa therapy in patients with chronic hepatitis C virus infection: prevalence, etiology, and management." - Hepatology Vol. 21 no. 3 pp. 645-9 1995 Mar A report in the Archive of Virology 1997 ;142(3):535-544 suggests that an inapparent coinfection of the hepatitis B virus (HBV) along with the hepatitis C virus may be implicated in cases of resistance to interferon treatment. In addition, HBV replication may persist in patients in whom HCV replication was inhibited by interferon treatment.

16) What About Transplants?

WHEN DOES A LIVER TRANSPLANT NEED TO BE DONE? This is a very complex issue and must be answered on a case by case basis. Anyone with hepatitis C should be followed by a physician regularly. If signs of progressive disease appear, the person needs to be referred to a gastroenterologist (specialist in digestive diseases and liver diseases). Since hepatitis C is known to progress very slowly, it is not necessary to have a liver transplant until the disease has reached "end stage". Factors to be assessed include the rate of progression of the disease, whether or not complications of liver failure have occurred and laboratory value including albumin, bilirubin, and prothrombin time.
WHAT ARE MY CHANCES WITH A LIVER TRANSPLANT? The survival rate after liver transplant overall is approximately 80% at one year, and 70% at five years. The odds for hepatitis C are approximately the same as for the average liver transplant for another reason.
HOW LONG WILL A NEW LIVER LAST? No one knows how long a transplanted liver can last. The longest reported survivor is 25 years. Ten year survival is commonplace. Hopefully improvements in techniques and medications that are continually occurring will allow most patients receiving liver transplants today to have long productive lives.
WILL THE HCV BE CURED BY A TRANSPLANT? No. Hepatitis C can live in cells other than in the liver. Once the old liver is removed and the new one is connected the hepatitis spreads back into the liver within the first weeks to months after the transplant. This is the bad news: at present we have no way to make the hepatitis C go away completely. The good news is that overall results with hepatitis C after liver transplantation is good. Although the disease comes back it does not seem to greatly damage the liver in the majority of cases. It is possible for the hepatitis to return so severely that the new liver fails, but this is uncommon. Long term results (ten years) are difficult to interpret since we have only been able to diagnose hepatitis C since 1990. Many people that were transplanted in the 1980's may have gotten hepatitis C at the time of transplant, since the blood supply was contaminated then. These people may have different chances compared to those that had transplant because of hepatitis C. Realistically it is likely that hepatitis C will be a long term problem in liver transplant recipients that harbor the virus. We do not yet know how bad a problem this will be.
WHAT CAN BE DONE WHEN HCV COMES BACK IN A NEW LIVER? No treatment has been shown to change the course of the disease. Interferon alpha is being tried in experimental settings without much success.
CAN A TRANSPLANT BE DONE FOR SOMEONE WITH HCV AND HBV? Yes, some transplant centers are currently doing liver transplants for this indication.
WHERE DO DONATED LIVERS COME FROM? Livers are donated, with the consent of the next of kin, from individuals who have brain death, usually as the result of a head injury or brain hemorrhage.
HOW CAN I DONATE MY ORGANS? If you wish to be an organ donor, carry an organ donor card and place an organ donor sticker on your medical identification card, or driver's license. If you have HCV you will not be allowed to donate any organs.

SOURCES:    Centers for Disease Control
                        National Institutes of Health
                        Hepatitis Foundation International

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