HCV antibody positive or diagnosed with HCV?

What does it mean to be diagnosed with Hepatitis C? For some people it means that someone has just told them that they tested positive for antibodies to hepatitis C. So, if you are screened for hepatitis C, which seems to be what everyone is calling getting tested for HCV antibodies these days, having a positive result means that you tested positive for HCV antibodies. If you are lucky, you will be one of the people who go on to rid themselves of the virus entirely. So you haven't really been diagnosed with chronic hepatitis C then, right? More tests are needed before you are said to be diagnosed with hepatitis C. And even then you may not need to start treatment immediately. Planning everything out could take months or even a year or two. New drugs are also being studied in clinical trials. Unless your doctor is very clear that it is time to start treatment for HCV and you are able to pay for it and manage the effects it will have on your job or school or life - take a breather and figure out how you are going to approach treating chronic hepatitis C.

So, if you test positive for antibodies to HCV you need follow up tests to determine if you are going to be diagnosed with HCV. Some of those tests are pretty expensive, but if you are going to start treatment, you really need to have them done. You're going to need to work out a strategy to pay for them. Contact us, or work with your doctor's office or a case management agency or community based group in your area.

There are many new drug combinations being studied for HCV treatment. They typically include peginterferon and ribavirn, a drug combination that is approved for the treatment of Hepatitis C as well as Hepatitis C in people who also have HIV. Clinical trials of experimental HCV treatments are listed

For information about liver disease research, see NIDDK

For consumer-based information about the liver, visit NIDDK's National Digestive Diseases Information Clearinghouse (NDDIC) online at www.digestive.niddk.nih.gov

Request Assistance Guidelines

Using the form Request Assistance will always get you a 24 to 48 hour response, unless traffic is very heavy. If you have submitted a request for HIV or Hepatitis assistance (or other) and we missed you, please try again. We have a new system in place that can handle the larger numbers. Thanks!

Patient Assistance Programs

Sometimes you must look for programs to cover the costs of your treatments or care. You might need to try a Patient Assistance Program. The pharmaceutical industry has set up programs that offer medications for free, or sometimes at a very low price. E-mail us for a specific drug or company's program. There are also other options we can suggest, such as savings cards or retail promotions at large chain stores.

The Network is a national, non- profit group. We provide no-fee case management, advocacy and counseling, and treatment and access information and referrals (English or Spanish) to people with AIDS/HIV, chronic hepatitis, and other diseases.

HALT-C: Low dose Pegasys failed
as "maintenance therapy"

The drug company Roche, internationally recognized as a leader in the treatment of hepatitis C (HCV), issued the following statement:

" Roche would like to provide comment on the "Prolonged Therapy of Advanced Chronic Hepatitis C with Low-Dose Peginterferon" (HALT-C) study published in the New England Journal of Medicine (NEJM). This study explored an experimental treatment regimen in a difficult-to-treat hepatitis C patient population. Roche had no role in this study other than providing Pegasys (peginterferon alfa-2a) medication for clinical study purposes."

"Pegasys is not approved for the treatment protocol outlined in this study, which is known as "maintenance therapy." As the results of HALT-C study clearly show, maintenance treatment failed to halt disease progression in these hepatitis C patients, and is not recommended."

"Pegasys is the most-studied pegylated interferon and has demonstrated efficacy in a broad range of patient types, even those with poor prognostic factors, including African Americans and patients co-infected with HIV. This study in no way changes the known efficacy or safety profile of Pegasys for its approved indication, which is for the treatment of adults with chronic hepatitis C virus (HCV) infection who have compensated liver disease and have not previously been treated with interferon alpha. Pegasys plus Copegus is the current foundation of HCV treatment and the pegylated interferon therapy of choice for most HCV antiviral agents in development."

"The current standard of care for HCV is comprised of pegylated interferon plus ribavirin, for a duration that is dependent upon factors such as genotype of the virus. A sustained virological response (SVR) is achieved in 76 percent of patients with genotype 2 or 3 who are treated with Pegasys plus Copegus. For the most difficult to treat genotype 1 virus, a 48-week treatment course generally results in sustained viral response in about 50 percent of patients. The clinical benefits of achieving SVR in hepatitis C have been widely documented, dramatically reducing a patient's chances of disease progression and associated life-threatening complications."

HHS Information: HALT-C Study

Treating patients who have chronic hepatitis C and advanced liver disease with long-term pegylated interferon significantly decreased their liver enzymes, viral levels and liver inflammation, but the treatment did not slow or prevent the progression of serious liver disease, a study finds.

These findings come from the clinical trial, Hepatitis C Antiviral Long-Term Treatment Against Cirrhosis (HALT-C) and are reported in the Dec. 4 issue of the New England Journal of Medicine. HALT-C was funded by the National Institutes of Health (NIH) with additional support from Hoffmann-La Roche Inc.

"The results from HALT- C show without question that maintenance therapy with peginterferon does not prevent progression of liver disease among patients who have failed prior treatments," said James Everhart, M.D., project scientist for HALT-C in the Division of Digestive Diseases and Nutrition, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the principal sponsor of HALT-C at NIH. "These findings heighten the incentive to develop more effective drugs for patients with severe liver disease due to hepatitis C."

Peginterferon therapy for up to 48 weeks is standard for chronic hepatitis C. But patients who do not have a sustained response to initial therapy have been given the drug over a longer time based on studies showing that this approach suppresses viral and enzyme levels, even if the virus is not completely eliminated. However, it was not known if long-term therapy would improve important clinical outcomes such as liver damage and death.

HALT-C, a randomized multicenter trial of 1,050 patients with chronic hepatitis C who had failed prior treatment to eradicate the infection, tested whether long-term treatment with peginterferon alfa-2a would reduce the development of cirrhosis, liver cancer, or liver failure. The 517 patients randomized to the treatment arm received 90 micrograms of peginterferon in weekly injections for 3.5 years. The 533 patients in the control arm underwent the same follow-up and care as the treated patients including liver biopsies, quarterly clinic visits and blood tests. All patients had advanced liver fibrosis, a gradual scarring of the liver that puts patients at risk for progressive liver disease and liver failure.

The outcomes studied in HALT-C were death, liver cancer, or liver failure, and for those who did not have cirrhosis initially, the development of cirrhosis. At the end of the study, 34.1 percent of the treated group and 33.8 percent of the control group had experienced at least one outcome. Patients in the treated group had significantly lower blood levels of the hepatitis C virus and improvement in liver inflammation. However, there was no major difference in rates of any of the primary outcomes between the groups.

Among treated patients, 17 percent stopped peginterferon after 18 months and 30 percent stopped the drug after two years. Infections, musculoskeletal or digestive problems were the most common reasons for stopping the drug.

According to HALT-C study chair and principal investigator Adrian M. Di Bisceglie, M.D., professor of internal medicine at Saint Louis University School of Medicine in Missouri, looking into how maintenance therapy works in non-responders is an important step. "Patients should not receive interferon as maintenance therapy for chronic hepatitis C. However, we can build on what was learned in HALT-C to identify better treatments that may delay or prevent liver damage in patients with advanced disease," he said.

• Request Assistance
• HIV Treatments
• Hepatitis Treatments
• The Access Project
• Patient Assistance Programs
• Federal poverty Guidelines

Lei Chou provides an update on Hepatitis B Treatment, as well as information on Gilead's program for co-payment assistance for patients in need of Truvada.

The Hepatitis C Appropriations Partnership (HCAP) has provided a very comprehensive plan for what they (which includes over 100 organizations throughout the country) would like to see accomplished in the new administration. It's a national viral hepatitis strategy (PDF)

Hepatitis C Book

It's called Hepatitis C Choices . This is the 4th edition. The 3rd edition was great. The 4th is a learning and counseling experience you won't soon forget. In fact, before you even start the book you might want to orient yourself to the whole idea of being HCV positive. It's called Hep C Discussion Point. You get very helpful responses to the questions you need answered.