I have been doing hepatitis C advocacy for nearly 18 years. My hope and fury have never been greater. We can cure hepatitis C, but people are having a hard time getting the medications. The Centers for Disease Control and Prevention (CDC) recommends HCV testing for baby boomers, but we aren’t doing it. This is the sort of stuff that drives me wild.
HCV Advocate Editor-in-Chief Alan Franciscus asked me if I would attend “Hepatitis on the Hill,” held in Washington, DC on March 9 and 10. After years of complaining about the government’s anemic response to the hepatitis C epidemic, I automatically said “yes.”
Approximately 75 hepatitis advocates met in Washington, DC, for Hepatitis on the Hill. Hosted by the Hepatitis Appropriations Partnership, Hep B United and the National Viral Hepatitis Roundtable, and supported by the National Alliance of State and Territorial AIDS Directors, the event focused on increasing the federal response to the viral hepatitis epidemic in the United States.
Hepatitis C virus (HCV) is killing more Americans every year than HIV is, but dollar for dollar, hep C funding is pennies compared to HIV’s. State health departments’ Viral Hepatitis Prevention Coordinator programs receive less than $1 in federal funding for every person living with viral hepatitis. In the meantime, hep C infection and death rates continue to rise. Immunizing all children against hepatitis B virus (HBV) also continues to be a problem.
Advocates from hep B and C groups attended Hepatitis on the Hill. The first day focused on core issues, particularly why now is the time for this level of advocacy. President Obama’s budgetary request for viral hepatitis programs is double that of previous budgets, and the advocates learned how to ask for support from their senators and congressional representatives.
The next day, advocates visited the offices of their senators and representatives on Capitol Hill, educating their staff on the experiences of people living with hep B and C. At each office, the advocates requested the following:
- Signature of House/Senate letter in support of the president’s proposed FY2016 budget to increase funding of the CDC’s Division of Viral Hepatitis to $62.8 million, and include the request in the member appropriations submissions
- Support the repeal of the federal funding ban on syringe services programs
- That their elected official would join the Congressional Hepatitis Caucus
Senator Bill Cassidy (R-LA), MD, spoke during lunch on Capitol Hill. Cassidy is a hepatologist, committed to issues surrounding viral hepatitis. Ronald Valdiserri, MD (deputy assistant secretary for health, infectious diseases, at the Department of Health and Human Services), and John Ward, MD (director of the CDC’s division of viral hepatitis), also spoke at Hepatitis on the Hill. Ward emphasized the urgent nature of acting now, saying we can prevent approximately 300,000 deaths.
Presentations by Reps. Brett Guthrie (R-KY), Mike Honda (D-CA), Charlie Dent (R-PA) and Hank Johnson (D-GA) were televised at the event. These congressional representatives introduced the Viral Hepatitis Testing Act of 2015 (HR 1101). In addition to being an ally in Congress, Johnson has been public about his hepatitis C status, treatment and eventual cure.
For information about how to support efforts to improve viral hepatitis funding and services, visit Lucinda Porter’s blog (blogs.hepmag.com/lucindakporter). The National Viral Hepatitis Roundtable and Caring Ambassadors Hepatitis C provide ongoing coverage of the latest news and advocacy alerts related to viral hepatitis in the U.S.
Portions of this article by Lucinda K. Porter first appeared in Hep Magazine, March 16, 2015.
