2009 marked a significant year for Project Inform, as we greatly expanded our hepatitis C (HCV) policy agenda at the federal, state and local levels. We began HCV advocacy in 2007 in response to the number of people living with HIV who are co-infected with HCV. It became immediately apparent that in addition to the need to address co-infection, there was a great need for increased policy and grassroots advocacy on behalf of the millions who are infected only with HCV and often have less access to the treatment and health care they need to survive than those who are co-infected.
Between 3 and 4 million Americans are living with chronic hepatitis C and the overwhelming majority are not aware of their status. Chronic HCV can lead to cirrhosis, liver failure, and is the leading cause of liver cancer in the US. Nearly 15,000 people die per year from this preventable disease. In addition, an estimated 25-30% of people with HIV are co-infected with HCV. End-stage liver disease is now a leading cause of death among people with HIV.
Despite these staggering statistics, the response by all levels of government has been abysmal. The federal government provides less than $20 million per year for viral hepatitis prevention services and there is no effort to establish programs to provide access to care and treatment for uninsured people living with HCV.
Meanwhile, most states and localities lack resources and a plan to offer adequate screening, testing, care, and prevention services. Project Inform is working in coalition with national, state and local partners to advocate for a comprehensive strategy to address the HCV epidemic. At the national level, we advocate for increased federal funding through our participation in the Hepatitis C Appropriations Partnership, led by the National Alliance of State and Territorial AIDS Directors (NASTAD). Our advocacy led to a $1 million increase in 2009. While highly inadequate, this represented the largest increase in several years.
We also participate in the steering committee of the National Viral Hepatitis Roundtable (NVHR), a national coalition of hepatitis B and C advocates. NVHR is leading efforts to pass the Viral Hepatitis and Liver Cancer Control and Prevention Act, which would establish a national hepatitis surveillance, prevention, screening, and testing program. We are also taking the lead in organizing the first hepatitis B and C rally at the Capitol on World Hepatitis Day, May 19, 2010.
At the California state level, we participate on the steering committee of the California Hepatitis Alliance (CalHEP), a statewide coalition of hepatitis B and C advocates. CalHEP played a major role in the development of the recently released California Adult Hepatitis Prevention Strategic Plan, a proposed roadmap to addressing the hepatitis epidemic in the state, and will focus on its implementation in 2010. To that end, we will be organizing a hearing in the California State Legislature on World Hepatitis Day.
In San Francisco, we played a leadership role in establishing the San Francisco Mayor's Hepatitis C Task Force and chair its Public Policy Subcommittee. The task force was formed in September 2009, and is composed of 32 advocates, medical and social service providers, and people living with HCV. Its goal is to develop a list of recommendations to the Mayor to improve San Francisco's response to the hepatitis C epidemic. For more information about the task force structure and goals, visit Project Inform's website.