Critical Issues From TAG’s Forthcoming HCV/HIV Co-Infection Report and Analysis
Research Still Lags
Tracy Swan’s teaser sneak preview of her upcoming Hepatitis C/HIV Co-infection Report (Version 2.0), slated for release this spring, is now available as both a printed booklet and on the Web. Her introduction to hepatitis C treatment advocacy began at Cambridge Health Alliance, a metro Boston-based service organization for active and recovering drug users. Years later, she conducted HIV and hepatitis C treatment education for the Massachusetts Department of Public Health. Currently she is a member of the Adult AIDS Clinical Trials Group (ACTG)’s Community Constituency Group as a representative to the Liver Disease Subcommittee and the Immunology Research Agenda Committee (IRAC). A summary introduction of her much anticipated report and analysis appears below.
The unfolding epidemic of hepatitis C virus (HCV) infection is a serious and growing problem. An estimated 170 million people around the world are infected. In the United States, at least four million people have been exposed to the hepatitis C virus, and 2.7 million of them have developed chronic hepatitis C. Chronically infected persons can either remain asymptomatic, progress very slowly, maintain mild to moderate liver scarring or develop serious liver damage, such as cirrhosis or hepatocellular carcinoma.
Hepatitis C-related liver damage has become the chief cause for liver transplantation in this country, and ten to twelve thousand people die each year from HCV-associated end-stage liver disease. Hepatitis C infection is a particularly severe problem for HIV-positive people. Up to a quarter of all people with HIV in the U.S. may be co-infected with hepatitis C. The progression of hepatitis C is accelerated in HIV-positive individuals, and HCV-related end-stage liver disease has become a leading cause of death in those with HIV.
The current state of research on hepatitis C infection lags far behind that on HIV. For example, it is not yet possible to grow infectious hepatitis C virions in tissue culture, and there is still no adequate animal model for hepatitis C infection or disease. These limits have seriously hampered the understanding of HCV’s replication cycle and have impeded development of new treatments. The best current combination therapy for hepatitis C (pegylated interferon and ribavirin) fails at least half those who undergo treatment, and the range and severity of its side effects can seriously affect patients’ quality of life, adherence, and chances for a successful outcome. Clearly more and better treatments are needed.
Although millions of Americans are infected and at risk for progression to serious disease, there is no federally funded infrastructure to coordinate education, prevention, testing, care, and treatment for hepatitis C infection. The lack of a comprehensive plan to reduce hepatitis C incidence — particularly through increasing access to sterile syringes — means that existing prevention programs have scattered and limited impact. Many individuals lack access to costly hepatitis C treatment, including the underinsured and uninsured, while cash-strapped AIDS Drug Assistance Programs (ADAPs) are in most cases unable to add expensive hepatitis C care to their already overburdened portfolios. Prisoners, among whom hepatitis C is endemic, have had to resort to litigation to obtain treatment. Projections of hepatitis C-related morbidity and mortality in mono- and HIV co-infected individuals forecast a significant upsurge in health care costs, illness, and loss of life over the next twenty years. The time to step up action to address gaps in research and policy is now.
TAG’s first hepatitis report, by Michael Marco and Jeffrey Schouten, released in July of 2000, was written to provide affected individuals, clinicians, researchers, educators and policy makers a detailed overview of hepatitis C and HIV/hepatitis C co-infection. The report concluded with a set of research and policy recommendations. In the spring of 2003, TAG will publish a new version of “The Hepatitis C/HIV Co-infection Report” that will include a revised and expanded set of research and policy recommendations for hepatitis C and HIV/hepatitis C co-infection research, prevention and care programs. These draft recommendations have been developed following a comprehensive literature review of more than 500 journal articles, abstracts from conferences on hepatitis C and HIV/hepatitis C, updated treatment guidelines, and interviews with hepatitis C and HIV/hepatitis C co-infected individuals, researchers, physicians, harm reduction experts, health educators, public health officials, and activists and advocates from both the hepatitis C and HIV communities.
The growing voice of hepatitis C advocacy and the increasing attention given to hepatitis C co-infection by HIV activists suggest that the timing is right for a broad-based coalition to press for a comprehensive research agenda and increased access to treatment. With these recommendations, TAG is hoping to broaden dialogue and collaboration among activists, policy makers, researchers, funders, educators and, especially, people with hepatitis C and HIV/hepatitis C co-infection.