Hepatitis B and hepatitis C are major public health problems in the United States. Millions of people have these treatable infectious diseases, most do not know it, and about 15,000 people die each year from liver cancer or liver disease resulting from these contagious viral infections. Together, hepatitis B and C are more common, and claim more lives each year, than HIV/AIDS. Despite the high numbers of people affected by and the morbidity and mortality associated with hepatitis B and C, only limited funding has been available to support federal, state, and local efforts to respond to these epidemics and they continue to persist. In response, the U.S. Centers for Disease Control and Prevention (CDC), along with several other government and private organizations, sought guidance from the Institute of Medicine (IOM) in identifying missed opportunities for addressing hepatitis B and C. The IOM report, Hepatitis and Liver Cancer: A National Strategy for Prevention and Control of Hepatitis B and C, offers recommendations on what state and local health departments can do as part of a national effort to address these epidemics.
Public health surveillance is an essential tool in the prevention and control of all infectious diseases, including hepatitis B and C. The IOM report concludes, however, that the surveillance system for viral hepatitis in the United States is poorly funded and consequently incomplete and inconsistent among jurisdictions. As a result, surveillance efforts do not provide accurate estimates of the current burden of disease, are frequently inadequate for follow-up of recently diagnosed cases, and do not give policy makers the information they need to best allocate resources to viral hepatitis prevention and control programs.
Some of the difficulties that surveillance systems face derive from the complexity of the infections and their progression. Most people acutely infected with hepatitis B virus (HBV) or hepatitis C virus (HCV) show no symptoms and thus do not seek medical attention. Even when symptoms occur and a person seeks help, the symptoms may resemble those of other common illnesses, and health care providers often do not conduct serologic testing for HBV or HCV. As a result, for many people who develop chronic HBV or HCV infection, the disease goes undetected for years, often until they develop symptoms of advanced liver disease, including liver cirrhosis or a type of liver cancer called hepatocellular carcinoma.
The resources available to process test results, classify the cases, and provide follow-up (such as educational materials and referral for treatment) are very limited. Moreover, many of the people at highest risk of contracting HBV and HCV have not been tested due to limited access to health care. High-risk populations include people using illicit injected drugs; the homeless; and immigrants from regions where HBV is endemic, especially Asia, the Pacific Islands, and sub-Saharan Africa. In addition, the ability of state and local surveillance program staff to track cases across jurisdictions, and hence to identify chronically infected individuals and to avoid counting previously reported cases, is hampered by such factors as inadequate resources, nonstandardized surveillance software systems, and the lack of a national database that could be used to identify potential matches.
Given such problems, the IOM report calls for the CDC to work with state and local health departments to develop a new model for structuring surveillance for hepatitis B and C. As envisioned, the model would have two tiers: one for core surveillance and one for targeted surveillance. The initial focus should be on developing and implementing standardized systems among all states to maximize their capacity to perform core surveillance for all cases of acute and chronic HBV and HCV infection. Core surveillance will include collection, processing, analysis, and dissemination of data. Standardization will be accomplished through cooperative agreements, improved guidance, and adequate and consistent funding. Systems should be integrated into existing disease surveillance infrastructure where feasible.
With core activities established, the CDC should lead in building the second tier of supplemental surveillance systems to better describe trends in at-risk populations, especially those unlikely to be fully represented in core surveillance data. Innovative surveillance projects should be carried out in both urban and rural regions, and they should enable researchers to focus on emerging behavioral risks, for example, in adolescents and young adults and in HIV-positive men who have sex with men. Additionally, partner notification services, which have been found to be effective for following up cases of HIV and sexually transmitted disease infections, should be piloted to determine their usefulness in following up cases of HCV infection. In both tiers, the state would be the primary unit of surveillance. The CDC should develop cooperative agreements to ensure that all states have sufficient infrastructure to identify and appropriately investigate all suspected cases of acute and chronic HBV and HCV infection. Cooperative agreements should require reporting of standardized viral hepatitis surveillance data within three years of implementation. The agreements should include funding for states to hire staff to process laboratory results, enter data, and follow up with management of cases of acute and chronic hepatitis B and C.