Thelma King Thiel Chairwoman, and Chief Executive Officer

Chairwoman's Message

June 2003

Chairwoman’s Report on Highlights of Consensus
Conference on Hepatitis C:

Experts from around the world presented data for a nonadvocate, non-federal panel of experts to help them prepare a statement reflecting their assessment of medical knowledge available at the present time. The audience of medical professionals, patient advocates and patients had an opportunity to make comments and suggestions for the panel’s consideration.

Some of the data presented included the following:

• 2.7 million Americans are chronically HCV infected. (Possible underestimate)
• An estimated 240,000 children have been exposed or are infected in the U.S.
• 68% of new cases are due to injecting drug use.
• Genotype 1a is the most common one in the United States; 1b is the most common worldwide.
• Factors that may influence progression of disease include: age, gender, alcohol use, steatosis, immune deficiency (HIV), metabolic disorders. and obesity.
• The HCV RNA test can identify virus in the blood within 7 — 14 days of exposure
• 15% - 45% of healthy individuals who become infected will recover spontaneously. Others will clear the virus in 6 — 12 months.
• Rates of sexual transmission vary from 4 — 6% in those at high risk to 2 — 4% in monogamous couples.
• 55% - 85% will become chronically infected.
• 37% of liver transplants being done are due to hepatitis C.
• 9,783 HCV infected individuals were on the waiting list for a liver transplant in 2001.
• The highest incidence of HCV is between 30 and 49 years of age.
• The risk of progressive disease after 20 years is approximately 2 — 4% identified in prospective studies.
• There is little evidence that the risk of progression of liver disease is affected by virologic factors, including viral load, viral genotype and quasispecies diversity.
• HCV accounts for an estimated 1/3 of cancer of the liver in the U.S.
• Approximately 4,000 deaths are attributed to hepatitis C each year.
• Patients may experience rheumatoid symptoms, keratoconjuncitivitis sicca, lichen planus, glomerulonephritis, porphyria cutanea tarda, and essential mixed cryoglobulinemia.
• Liver biopsy yields information on fibrosis and histology assessment that is not obtainable by other means.
• Radiologic imaging (ultrasound, MRI, etc.) is not reliable in diagnosing cirrhosis. Non-invasive diagnostics are needed.
• Treatment response rates between 33% and 41% have been achieved with PEG-interferon with Ribavirin.
• The HALT-C trials are addressing the effectiveness of long-term therapy.
• Treatment is recommended for patients who are at increased risk for progression to cirrhosis.
• In certain circumstances, therapy may be stopped if a patient has an inadequate viral response at week 12.
• Interferon treatment is not recommended during pregnancy.
• Response rates depend on genotype and viral load.
• A cure is possible.
• In patients with persistent ALT elevations, but with no fibrosis and minimal inflammation, progression to cirrhosis is likely to be slow; these patients should be monitored periodically.
• All HIV infected person should be screened for HCV.
• Few data are available on HCV treatment of injection drug users and decisions should be made on an individual basis.
• Coinfection may accelerate the course of HCV disease.
• HCV infected individuals should be vaccinated against hepatitis A and B.
• Preventive education K-12 is essential to protect children and bring viral hepatitis under control.
• Awareness campaigns to alert the public about risk behaviors and to promote prevention and organ donation are needed.

Research to find better treatments and a cure are compromised by the fact that there is no cell culture for the hepatitis C virus, there is no small animal model available and the virus provides no protective immunity (individuals can become reinfected after recovery).

Additional funds are needed to increase research regarding treatment and prevention of hepatitis C.

— Thelma King Thiel

A final report is now available on the NIH website.