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Washington Days 2004 Position Paper

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March 2004

The National Hemophilia Foundation urges you to become a cosponsor of S. 1143/H.R. 3539, the Hepatitis C Epidemic Control and Prevention Act. This legislation is needed to promote a comprehensive, coordinated effort to prevent and reduce the burden of hepatitis C.

Background
Hemophilia and other bleeding disorders occur when specific proteins that cause the blood to clot are missing. Blood clotting factors, derived from human plasma or manufactured using recombinant technology, are infused into the blood to replace the missing protein. Prior to 1990, the risk of contracting the hepatitis C virus (HCV) from donated blood or plasma was between 8% and 10% for the general population. This risk was amplified for persons with bleeding disorders as, at the time, clotting factor was manufactured from pools containing plasma from as many as 60,000 to 400,000 donors.

Today HCV testing, deferral of blood and plasma donors and improved viral inactivation technologies used in the manufacture of clotting factor have improved the safety of the nation’s blood supply and blood products. The toll on the bleeding disorders community, however, remains quite high. The Centers for Disease Control estimates that 6,200 of the individuals in the bleeding disorders community are affected with HCV, or nearly 45% of all persons with hemophilia.

Need for Greater Coordination and Outreach
Overall, nearly four million people in the United States are infected with HCV, with transmission by blood or blood products accounting for 10% of these cases. Of those affected, an estimated 2.5 million are not receiving treatment. HCV is known as the “silent killer” because, without testing, its presence may not be known until the late stages of the disease.

The Hepatitis C Epidemic Control and Prevention Act would authorize and provide support for a comprehensive prevention, research and medical management referral program for HCV infection. The bill calls for:

• Development and implementation of a federal HCV prevention, control and management plan, including strategies for education and training, surveillance and early detection and research.

• Support for state, local and tribal testing/counseling programs, including vaccination against hepatitis A and B and other infectious diseases.

• Establishment of HCV surveillance databases for monitoring of the disease by CDC.

• Establishment of a Liver Disease Research Advisory Board to coordinate HCV research efforts within the National Institute of Health (NIH).

• Development of clinical research networks by the NIH to improve treatment and management of HCV, including new approaches to prevention such as vaccines.

Need for Improved Treatments

While diagnosis and treatment methods for HCV are improving, overall the success rate for controlling the disease remains low. Current HCV treatments also produce adverse side effects such as flu-like symptoms, weight loss, and depression. Key HCV research priorities for the bleeding disorders community include:

• Basic research to enhance the scientific understanding of HCV and define the natural history of chronic HCV infection.

• More effective, less toxic HCV treatments and management of side effects.

• Treatment recommendations for currently available drugs, and updated recommendations for new drugs as they become available.

• Optimal monitoring tests, specifically which tests and how often, as well as indications and mechanisms for liver biopsy.

• Noninvasive markers to predict disease severity among those at greatest risk for end stage liver disease and to identify which patients will benefit most from treatment.

These priorities are mirrored in the recommendations emerging from the 1999 and the 2002 NIH HCV consensus conferences.

Support for Legislation

Your support is needed to ensure passage of the Hepatitis C Epidemic Control and Prevention Act this year. The Senate bill (S. 1143) is sponsored by Senators Kay Bailey Hutchison (R-TX) and Edward Kennedy (D-MA). Congresswoman Heather Wilson (R-NM) is the lead sponsor for the House bill (H.R. 3539). A current cosponsor list for both bills is attached.

COSPONSOR S. 1143/H.R. 3539 TODAY!