A coalition of hepatitis C advocates is asking organizations to sign on to their request to Congress to increase funding to the Centers for Disease Control (CDC) for hepatitis C. Funding would be used towards implementing the CDC National Hepatitis C Prevention Strategy and recommendations from the National Institutes of Health's 2002 Consensus Statement on the Management of Hepatitis C.
From the CDC's Executive Summary of the national prevention strategy:
"The goals of the National Hepatitis C Prevention Strategy are to lower the incidence of acute hepatitis C in the United States and reduce the disease burden from chronic HCV infection. Achievement of these goals requires: 1) harm reduction programs directed at persons at increased risk for infection to reduce the incidence of new HCV infections; 2) counseling, testing, and medical evaluation and management of infected persons to control HCV-related chronic liver disease; 3) surveillance to evaluate the effectiveness of prevention activities; and 4) research to provide answers to questions pertinent to the prevention and control of hepatitis C."
The full strategy, released in 2001, is available as a PDF file here.
Here's the message from hepatitis C advocates:
The National Hepatitis C Advocacy Council (NHCAC) needs your organizations support!
Below is a sign-on letter to show your support for the increased hepatitis C
appropriations requested by members of National Hepatitis C Advocacy
Council. NHCAC has delivered this letter to Senators and Congressmen
supporting the “Hepatitis C Epidemic Control and Prevention Act.”
WHO SHOULD RESPOND: Organizations serving people with, or at risk for,
hepatitis C (Please do not sign as individuals, if you are not a member of
an organization but are in support of the appropriation request and your
local group is not listed, call your local organization, make sure they are
in support of this and are signing on. Also, please register yourself and/or
your organization for our “Legislative Update” email action alert list at
the NHCAC website.)
WHEN SHOULD YOU RESPOND: Organizations wishing to sign on should e-mail by 5 pm EST, Wednesday, April 14, 2004.
WHERE SHOULD YOU RESPOND: Send emails to Lorren Sandt.
The “Hepatitis C Epidemic Control and Prevention Act” can be viewed here.
Please help distribute this letter and encourage organizations to sign-on.
Full text of the letter appears below.
We are writing to express our strong support for increased funding for Hepatitis C activities at the Centers for Disease Control and Prevention to support the CDC National Hepatitis C Prevention Strategy, and the 2002 NIH Consensus Statement on the Management of Hepatitis C and accompanying recommendations.
We are pleased that the CDC National Center for Infectious Diseases has established a program to lower the incidence of hepatitis C through education, outreach, and surveillance. Since FY 2004, the CDC has funded two additional hepatitis C coordinators (now in 50 health departments) to initiate hepatitis prevention and control activities. This is progress, yet we believe that a stronger commitment to hepatitis C is needed to fully implement the goals and recommendations of the CDC National Hepatitis C Prevention Strategy and the 2002 NIH Consensus Statement on the Management of Hepatitis C.
Direct funding for hepatitis C activities has not increased significantly in recent years, though research has shown that 25,000 new cases are diagnosed each year and approximately 10,000 Americans die from related complications. According to the CDC, $22,781,000 was spent on hepatitis C activities in FY 2003, which was decreased to $22,596,000 in the FY 2004 appropriation. These funding levels are not adequate to fully implement the goals and recommendations supported by the Administration.
We highly recommend that the CDC allocate additional funding to the Division of Viral Hepatitis (DVH) for hepatitis C activities, which is within the National Center for Infectious Diseases Control (NCID). According to the CDC’s budget documents, NCID received $359,225,000 in FY 2003, with a small increase to $369,485,000 in FY 2004. For FY 2005, the Administration has proposed funding for NCID’s at $400,779,000, an increase of $31 million.
Therefore, we request that Congress increase its current spending for hepatitis C activities by $15 million in FY 2005 to show the federal government’s commitment to stopping the spread of hepatitis C. We believe that this is a reasonable request considering that hepatitis C funding levels have not kept pace commensurately with increased funding to NCID. Funding has also lagged behind despite recommendations being made to guide CDC efforts in addressing the hepatitis C epidemic and despite the growing need to stop the spread of hepatitis C, which has become the nation’s most common chronic blood-borne viral infection.
To fully implement the CDC National Hepatitis C Prevention Strategy, CDC’s DVH needs $100 million in FY 2005. We recommend that an additional $10 million be allocated specifically for implementation of the National Hepatitis C Prevention Strategy. We are concerned that 6 states still lack hepatitis C coordinators and that state health departments have no consistent source of funds to provide hepatitis C counseling and testing to individuals at high risk of acquiring this disease. Further, without adequate chronic hepatitis C surveillance and case registries, state health departments are unable to assess an accurate hepatitis C incidence and burden of disease. States also lack the resources to provide more aggressive HCV outreach and medical management referrals. Therefore, we respectfully request that Congress provide the CDC with an additional $10 million to address this need.
We have attached report language [see below, after list of NHCAC members] to accompany these funding increases that we believe provides appropriate guidance to establish, promote, and support a comprehensive prevention, research, and medical management referral program for hepatitis C virus infection. Your consideration of this request is very much appreciated. We look forward to working with you throughout the appropriations process to ensure that this silent epidemic does not go unnoticed. With your continued support we can ultimately save tens of thousands of lives.
National Hepatitis C Advocacy Council (NHCAC)
Together by need. United by choice.
American Liver Foundation
New York, NY 10038-4810
H.E.A.L.S of North Georgia
Woodstock, GA 30188-1939
Hepatitis C Association
Scotch Plains, NJ 07076
Hepatitis C Caring Ambassadors Program
Oregon City, OR 97045
Hepatitis C Education and Support Network
Locust Grove, VA 22508
Hepatitis C Support Project
San Francisco, CA 94142-7037
Hepatitis Education Project
Seattle, WA 98103-6513
Houston, TX 77060
Hepatitis Prevention, Education, Treatment and Support Network of Hawai`
Honolulu, HI 96816
Hepatitis Research Foundation
Poughkeepsie, NY 12601
Hepatitis Resource Network
Puyallup, WA 98372
Hep C Advocate Network (HepCAN)
Longview, TX 75606
North Miami, FL 33161
Hep C Connection
Denver, CO 80203
Long Beach, NY 11561
Minnetonka, MN 55345
Missouri Hepatitis C Alliance
Centralia, MO 65240
Veterans Aimed Toward Awareness
Middletown, DE 19709
Attached Report Language
Division of Viral Hepatitis:
Hepatitis C infection is the most common chronic blood-borne viral infection in the U.S. An estimated 25,000 new cases are diagnosed each year, with approximately 10,000 Americans dying from related complications, including cirrhosis and liver cancer. Over $600 million is spent annually on treating these complications. Because most persons with chronic HCV infection have yet to be diagnosed but are likely to come to medical attention in the next decade, a fourfold increase in the number of adults diagnosed with chronic HCV infection has been projected from 1990 to 2015. Many are not aware of their infection, making the disease a “silent epidemic.” Therefore, the Committee recommends that $15 million of the increased funding to the National Center for Infectious Diseases be allocated to supplement existing hepatitis C prevention activities, for a total of $37,596,000. The Committee is pleased that several states, in collaboration with community stakeholders, have developed a state plan to address hepatitis, but recognizes that there are virtually no funds to implement these plans. The Committee believes that the Division of Viral Hepatitis needs these supplemental funds for implementation of the recommendations and strategies of these plans.
The Committee recognizes that 100,000,000 dollars are required for implementation of the National Hepatitis C Prevention Strategy. The Committee is allocating $10 million specifically for the National Hepatitis C Prevention Strategy, and encourages CDC to allocate additional funds for implementation efforts. This prevention strategy includes enhancing state and local health department and community-based organizations’ efforts to provide counseling, testing, partner notification, heath education and medical referral to persons at risk of or infected with hepatitis C, and to enable state health departments to establish surveillance systems to monitor the burden of disease. While most States have designated a state Hepatitis C Coordinator, the Committee is concerned that coordinators are still lacking in 6 states. CDC is urged to work with these States to ensure the availability of hepatitis C coordinators. The Committee also notes that hepatitis C counseling and testing programs are not universally available, and hopes that these resources will address this gap. These resources should also ensure that more aggressive HCV outreach linkages to care are available in all states to those seeking hepatitis C prevention services.