The recent Lancet Global Burden of Disease analysis found viral hepatitis to account for almost 1.5 million deaths (1.45 million, 95 percent confidence interval [CI]: 1.38 to 1.54 million) and 41.6 million years of life lost to society every year (95 percent CI: 39.1 to 44.7 years) (Stanaway et al., 2016). An editorial in the same issue of Lancet pointed out that despite causing more deaths than HIV, tuberculosis, and malaria, viral hepatitis gets relatively little funding or attention from policy makers (Wiktor and Hutin, 2016). “One reason for this,” the authors propose, “is the difficulty in accurately quantifying and explaining the morbidity and mortality related to viral hepatitis” (Wiktor and Hutin, 2016, p. 1). Hepatitis B virus (HBV) and hepatitis C virus (HCV) infections are clinically silent in most patients for decades, and when symptoms do emerge they are often non-specific or mild. Serious clinical consequences of infection may occur decades later, with the root infection often not recorded on death certificates (Mahajan et al., 2014; Wiktor and Hutin, 2016).
In forming a national hepatitis strategy, the World Health Organization (WHO) advises each country to “know your epidemic,” and respond accordingly (WHO, 2016). Reliable data on new infections, morbidity, and mortality from hepatitis B and C are a fundamental part of tailoring an effective response strategy. This is not to say that collecting such data is an end in itself. The WHO guidance emphasizes the importance of a system that “translates up-to-date data on viral hepatitis into usable information” to drive political commitment (WHO, 2016, p. 26). Such data also have immediate practical value. When, for example, surveillance identifies a spike
in HBV infections associated with a medical or dental practice, the health department can respond with suitable counter-measures.
In the United States, measuring the burden of disease is the primary responsibility of state and local health departments that collect data and send the de-identified information to the Centers for Disease Control and Prevention (CDC). The CDC defines public health surveillance as “the ongoing, systematic collection, analysis, interpretation, and dissemination of data regarding a health-related event for use in public health action to reduce morbidity and mortality and to improve health” (German et al., 2001; Rutherford, 2001; Thacker and Berkelman, 1988). A 2010 Institute of Medicine committee further discussed the role of surveillance for HBV and HCV (IOM, 2010). In its report, the committee cited a role for the health department in identifying and responding to outbreaks, developing well-targeted estimates of disease burden, and evaluating ongoing prevention programs (IOM, 2010).
State and local health departments are legally required to conduct surveillance on reportable conditions, including hepatitis B and C, though privacy laws prevent them from sharing identifiable information outside their jurisdictions. In order to keep the data consistent across states, the CDC has developed a standardized case reporting format, though states often collect additional data that are not shared with the CDC. Increased surveillance for viral hepatitis would surely bring more cases to light. Case finding with proper follow-up could ensure patients access to medical care. Using such data, state and local health authorities can describe the HBV- and HCV-infected populations, calculate what proportion of them receive care, and set targets for improved use of services. Understanding the incidence and prevalence of viral hepatitis is complementary to surveillance activities. Such research, combined with surveillance, will provide needed information about viral hepatitis in the United States. This chapter describes ways through which both could be improved.
As discussed in this committee’s phase one report, not all state or local health departments are in a position to measure morbidity and mortality attributable to viral hepatitis (NASEM, 2016). Meeting the goals set in the previous chapter will require this and more: well-placed preventive services, efficient screening and testing, and care that reaches all patients, especially the poor and people who inject drugs. The full range of services for viral hepatitis elimination is sometimes presented as a cascade, as shown in the next chapter, with the preventive measures intended for the whole population at one end and progressively more specific services reaching the patients who need them. Information about every step on this cascade will be essential in elimination. This chapter discusses improvements to the national viral hepatitis information system that would advance this goal.
Routine surveillance at the state and local levels will be essential to meet the goals discussed in the previous chapter. The same was true for smallpox eradication and for all disease elimination programs (Broekmans et al., 2002; Cattand et al., 2001; de Quadros et al., 1996; Nesheim et al., 2012; WHO, 1980; Zhou et al., 2013). In the United States, the same state and local health authorities that coordinate control efforts also conduct surveillance. Every week, health departments around the country send the CDC electronic data on nationally notifiable diseases, usually communicable diseases of public health significance (Smith et al., 2013). Both acute and chronic hepatitis B and C are notifiable conditions, but because of the chronic and frequently asymptomatic nature of the infections, surveillance for viral hepatitis is different from that for many other infectious diseases. Viral hepatitis surveillance requires tracking individual patients over time and processing a large amount of information for every case. In some ways, the best transferable examples for hepatitis surveillance systems come from HIV, also a communicable, chronic infection. HIV surveillance data are increasingly used to measure patients’ progress from diagnosis to care to suppression of viral load (Medland et al., 2015).
Data gleaned from routine surveillance can give insight into patterns of access to care; help estimate disease burden in a particular region; and tailor prevention and response activities (Barton et al., 2014; Cocoros et al., 2014; HHS, 2015; Kinnard et al., 2014; Klevens et al., 2009; Viner et al., 2015). But in 2014, the most recent year for which data are available, 11 states did not report any newly detected cases of chronic HBV infection; another 11 states did not report any cases of acute HCV infection; and 17 states did not report any past or present cases of HCV infection (CDC, 2016b). These limitations raise concerns about the fitness of the hepatitis surveillance system. Elimination will depend on a more accurate picture of disease burden, as described in Box 3-1.
Integrated, highly automated, electronic surveillance systems could go far toward improving our understanding of the national disease burden (Troppy et al., 2014). To be effective, informatics tools need to be paired with human expertise, ongoing maintenance and technological support. CDC investment in both would advance viral hepatitis elimination in the United States.
Recommendation 3-1: The Centers for Disease Control and Prevention (CDC), in partnership with state and local health departments, should support standard hepatitis case finding measures, and the follow-up, monitoring, and linkage to care of all viral hepatitis cases reported through public health surveillance. The CDC should work with the
National Cancer Institute to attach viral etiology to reports of liver cancer in its periodic national reports on cancer.
The widespread use of electronic medical records holds promise for better understanding of the viral hepatitis epidemic, but this promise has not yet been realized. Traditionally, health departments rely on providers
and laboratories to report cases of viral hepatitis and other notifiable conditions (CDC, 2015). Such reporting obligations compete for providers’ limited time and attention and are often late or incomplete (CDC, 2013, 2014; Dixon et al., 2013; Jajosky and Groseclose, 2004; Lazarus et al., 2009). Automated, electronic reporting from diagnostic laboratories has improved the speed and efficiency of reporting, but the reports typically lack important clinical details (Birkhead et al., 2015; Heisey-Grove et al., 2011; Klompas et al., 2012; Lazarus et al., 2009; Overhage et al., 2008). Electronic health records contain comprehensive information and may help improve viral hepatitis surveillance. Box 3-2 describes how such a system has been used in Massachusetts.
The informatics tools developed in Massachusetts and described in Box 3-2 can improve health departments’ ability to find viral hepatitis patients, but such improvement depends on the ability of staff epidemiologists to evaluate the electronic reports and integrate them into daily work. Massachusetts is one of seven jurisdictions that the CDC chose for enhanced viral hepatitis surveillance (CDC, 2016b). These seven sites provide insight into the changing nature of viral hepatitis in the United States, such as the increase in HCV infection among young people who inject drugs (Altarum Institute, 2013; CDC, 2011). Data from the enhanced sites also help illuminate the true burden of disease. Research in Europe suggests that health departments’ notification of viral hepatitis infection is more a function of local testing practices than full burden of disease (Duffell et al., 2015). As the enhanced surveillance sites tend to find more cases of viral hepatitis, their data can be used to model the difference between reported and unreported infections (Klevens et al., 2014).
The use of electronic medical records in surveillance would provide health departments with a wealth of information about viral hepatitis. A patient’s history of prior negative antibody tests before a positive test could allow for precise identification of a new infection, for example. Analysis of claims data could also supplement hepatitis surveillance, as it has with zoonotic diseases (Jones et al., 2013; Tseng et al., 2015). The Robert Wood Johnson Foundation’s Digital Bridge Project aims to develop systems to make such information available to public health authorities (Digital Bridge, n.d.). With input from the CDC, various state and local health departments, and industry, the goal is creating a computing platform capable of using clinical data for public health (Digital Bridge, n.d.). It is possible that such a system might eventually be able to run algorithms for viral hepatitis outcomes of public health interest.
Automated, electronic systems cannot replace traditional public health surveillance, however. The work of tracking cases through the care cascade, identifying pregnant women with HBV infection and counseling them on neonatal prophylaxis, and describing the demographic characteristics of
and risk factors for viral hepatitis in a community will continue to fall on health department staff working in partnership with providers.
The CDC’s Epidemiology and Laboratory Capacity for Infectious Disease funds, through cooperative agreements to support basic surveillance, epidemiology, laboratory, and information systems, health departments in all 50 states, as well as 8 territories and 6 cities (CDC, 2016a). This cooperative agreement might be a valuable way to continue funding enhanced viral hepatitis surveillance as part of an elimination program. As the cooperatives already fund capacity building for other infectious diseases, using this funding tool might allow for better integration of viral hepatitis surveillance with other infectious diseases on a national scale. Funding could be used to improve informatics, giving other jurisdictions access to tools like those used in Massachusetts to mine electronic records, to improve electronic laboratory reporting for all viral hepatitis laboratory results, and to support increased staff capacity. Each health department should have suf-
ficient staff to manage the electronic system, follow reported cases, confirm their enrollment in care, and conduct outbreak investigations.
Enhancement of viral hepatitis surveillance will require changes to regulations in some states. As it is now, states have different regulations for the reporting of hepatitis B and C cases (CDC, 2015). Understanding the hepatitis care continuum in a given jurisdiction means having data on care and treatment, as well as a series of test results over time. For example, a negative HCV RNA test on a hepatitis C case after treatment provides health departments with valuable evidence of sustained virologic response. In New York, reporting of negative HCV RNA has been required since 2014, allowing the New York City health department staff to determine that about 40 percent of HCV infections reported in 2015 were cleared, either spontaneously or through treatment (Flanigan, 2017; New York City Department of Health and Mental Hygiene, 2016). Similarly, improvement in how chronic hepatitis B cases are captured would not only inform a better estimate of local prevalence, it would also help ensure that all HBsAg+
pregnant women are provided case management to prevent mother-to-child transmission of HBV.
In its guidance to member states, the WHO advises that “the hepatitis information system should be fully integrated into the broader national health information system to ensure standardized and coordinated reporting and to maximize efficiencies” (WHO, 2016, p. 27). In the United States, one important area where the information system might be improved is cancer registries. These registries are usually run by state health departments and can be used to calculate cancer incidence and monitor disease burden over time (American Cancer Society, 2014; Parkin et al., 2001). The National Cancer Institute’s SEER1 program is another major cancer resource that draws data from some of the best cancer registries around the country to calculate national statistics on cancer incidence and mortality (American Cancer Society, 2014).
Cancer registries generally report information on primary liver cancer (cancer that begins in the liver) by combining data on the two main types: hepatocellular carcinoma and intrahepatic bile duct cancer. These two types of disease have different etiologies, however. Intrahepatic bile duct cancer is rarer in the United States and occurs more frequently in patients with ulcerative colitis and primary sclerosing cholangitis (NCI, 2016b). Hepatocellular carcinoma, on the other hand, accounts for 90 percent of primary liver cancers in the United States; hepatitis B and C are its most common causes (Altekruse et al., 2009; London and McGlynn, 2006; NCI, 2016a).
Hepatitis B and C cause hepatocellular carcinoma through different mechanisms (Barazani et al., 2007). HBV acts by disrupting the host’s genomic stability when inserting its genetic material into the host’s DNA and through the expression of certain proteins that may affect normal cell function and cause cancer in non-cirrhotic patients (Chisari et al., 2010; Xu et al., 2014). Chronic HBV infection can cause cirrhosis, leading to multiple cycles of cellular injury and regeneration, also a pathway to cancer (El-Serag, 2012; Fernandez-Rodriguez and Gutierrez-Garcia, 2014). The process of chronic inflammation and cirrhosis is also the mechanism through which HCV causes cancer (Hoshida et al., 2014). The different etiologies can affect clinical presentation and tumor burden, which influence patients’ treatment options, outcomes, and long-term survival (Barazani et al., 2007). It is therefore important to be able to estimate the burden of hepatocellular carcinoma by cause across different demographic groups in the United States (Altekruse et al., 2009; Barazani et al., 2007; Yu et al., 2006). But the classification system used in cancer registries does not allow for reporting of etiology. Collecting this information could help measure the cancer burden attributable to chronic HBV and HCV infection, as well
1 Officially, the Surveillance, Epidemiology, and End Results program.
as identify disparities and study trends in cancer burden over time. Cross-referencing cases of liver cancer with state viral hepatitis registries would be one way to determine a viral hepatitis etiology of liver cancer. It would also help to have the cancer registry request and include viral serology in patient charts and electronic records when they collect information about new cases.
In the same way, surveillance for viral hepatitis would be improved by linking health department data to other vital records. Linking to death registries would allow for better understanding of mortality among HBV- and HCV-infected people, and matching with birth registries could help women at risk of mother-to-child transmission of HBV (Kuncio et al., 2016; Moore et al., 2016; Pinchoff et al., 2014). The sharing of data among states could also be helpful, but it would require an automated system to identify duplicate cases in multiple state registries. Tracking cases across states is a complicated and time-consuming process, currently done only for HIV and AIDS cases, a smaller number than for HBV and HCV infections (Glynn et al., 2008).
A Better Understanding of Incidence and Prevalence
Public health surveillance can be an invaluable tool in disease elimination and one that is crucial if local estimates of disease burden are to be compared to national data. While surveillance can support improved local estimates of incidence and prevalence, data are typically derived from cases that are already in care. A more complete understanding of the epidemiology of viral hepatitis and associated complications comes from epidemiological research, especially in select populations with known risk factors. Such research is challenging, as much of the burden of disease is borne by people on society’s margins: the imprisoned, people who inject drugs, and people born in endemic countries.
The seven jurisdictions that are doing enhanced viral hepatitis surveillance are finding higher burden and more cases among young people than CDC estimates would suggest (CDC, 2016b; Flanigan, 2017; Hart-Malloy et al., 2013; Massachusetts Department of Public Health, 2016; Michigan DHHS, 2015). Their findings point to a higher true incidence and prevalence of HBV and HCV infections than previously thought, a hypothesis that could be best explored with a population sero-survey of people thought to be most at risk for viral hepatitis.
The National Health and Nutrition Examination Survey
In some ways, the most efficient strategy for conducting sero-surveys would be to work through an existing national study, such as NHANES2. For over 50 years, NHANES has provided invaluable data on the health and nutritional status of Americans. The surveys are population-based and combine interviews, clinical examination, and collection of biological specimens. NHANES is repeated every year in adults and children; its results form the evidence base for numerous health policy decisions (NCHS, n.d.-b).
The relevance of the NHANES model to understanding viral hepatitis is questionable, however (Edlin et al., 2015). Though the survey has been used to estimate the prevalence of chronic HBV and HCV infections in the United States, the study design excludes or undersamples some groups known to be at high risk of viral hepatitis (Denniston et al., 2014; Edlin et al., 2015; Roberts et al., 2016). NHANES participants are chosen from households; they cannot be institutionalized or homeless (Edlin et al., 2015; NCHS, n.d.-a). For these reasons, NHANES likely underestimates the prevalence of chronic hepatitis C infection by about 30 percent (Edlin et al., 2015).
Furthermore, participation in population-based studies like NHANES is declining, and even when the overall refusal rate is low, there is a risk of systematic differences between the participants and those who decline or ignore the invitation (Galea and Tracy, 2007). In the past, the National Center for Health Statistics has responded to concerns about NHANES participants by oversampling key populations (NCHS, 2015). The oversampling of Asian Americans in the 2011-2012 survey indicated a prevalence of hepatitis B 10 times higher than the rest of the population (Roberts et al., 2016).
The Chronic Hepatitis Cohort Study
Another ongoing epidemiological study of viral hepatitis in the United States, the Chronic Hepatitis Cohort Study (CHeCS), has improved our understanding of the characteristics of and prognosis of chronic hepatitis B and C patients (Moorman et al., 2013; Niederau et al., 1998). CHeCS works through health systems in Hawaii, Michigan, Oregon, and Pennsylvania (Moorman et al., 2013). Patients’ electronic and billing records are analyzed for evidence of chronic HBV and HCV infection (Moorman et al., 2013). Research in this cohort has helped determine that chronic hepatitis C infection is incorrectly omitted from tens of thousands of death certificates
2 Officially, the National Health and Nutrition Examination Survey.
CHeCS is not a sero-study, however, and, because data are drawn from patient records, about 97 percent of participants have some form of health insurance (Moorman et al., 2013). Key populations for viral hepatitis, including prisoners and people who inject drugs, are not captured in claims studies, limiting generalizability. CHeCS is, therefore, not the most promising framework in which to ask broader questions about viral hepatitis in the at-risk population. This is not to say that CHeCS and other claims databases could not be used to create a more accurate picture of the burden of viral hepatitis. The Agency for Healthcare Research and Quality’s Healthcare Cost and Utilization Project databases contain information on cost, medical practice, and quality of services that could also be used for hepatitis research (AHRQ, 2016).
There is no ongoing cross-sectional or cohort study of sufficient reach, especially in high-risk populations, from which to form reliable estimates of the prevalence and incidence of viral hepatitis and liver-related outcomes such as cirrhosis. A cohort study that tracked high-risk patients in multiple, representative settings would inform a better understanding of disease incidence. Periodic cross-sectional surveys that include similar populations would form the basis for an accurate estimate of disease prevalence. These studies would complement data about viral hepatitis coming from NHANES.
Recommendation 3-2: The Centers for Disease Control and Prevention should support cross-sectional and cohort studies to measure HBV and HCV infection incidence and prevalence in high-risk populations.
The Bureau of Justice Statistics’ Survey of Inmates in Federal Correctional Facilities, Survey of Inmates in State Correctional Facilities, and Survey of Inmates in Local Jails are promising vehicles for reaching a key population. The survey in federal facilities has been conducted three times since 1991, the survey in state facilities seven times since 1974, and the survey in jails six times since 1972 (BJS, 2002, 2004a,b). Participants are chosen in a two-stage process, with the facility selected first, then the inmate (BJS, 2002, 2004a,b). The questions have changed slightly in different survey iterations; questions about health, medical problems, and drug use are already part of the process (BJS, 2002, 2004a,b). At the same time, epidemiological research is not within the purview of the Department of Justice; such questions and expertise would have to come from partners at the CDC. It is also possible that imprisoned people would be reluctant to participate in a physical exam that includes a blood draw. Employing public health nurses for the medical portion of the exam may help overcome these
concerns and has been an effective strategy in other correctional settings (Ruiz et al., 1999).
The blood draw component of the proposed viral hepatitis cohort and cross-sectional studies is crucial. In its efforts to develop these studies, the CDC should promote a basic panel of hepatitis B serum biomarkers, including HBsAg (to check for chronic infection), total hepatitis B core antibody (anti-HBc) (to check for prior infection), and hepatitis B surface antibody (anti-HBs) (to check for immunity). This would not be a departure from standard practice. As for hepatitis C tests, HCV RNA should be reported in addition to HCV antibody. About 25 percent of people infected with HCV clear the infection spontaneously (Micallef et al., 2006). These patients will continue to test positive for HCV antibody, as will people who have been cured medically. As the CDC tracks progress toward the elimination targets proposed in Chapter 2, accurate information about current, viremic infections, as indicated by HCV RNA, will be essential (since chronic hepatitis B infection is not curable currently, there is no parallel requirement for hepatitis B reporting).
Traditionally, the relatively crude measure of hepatitis C disease burden afforded by HCV antibody was accepted because there was no good biomarker to estimate incidence. The recent development of an HCV immunoglobulin antibody avidity assay could change this (Patel et al., 2016). By measuring biomarkers that change with the duration of infection, the assay can identify recent infections in a cross-section of the population (Patel et al., 2016). The test is still being validated and has been shown to precisely estimate incidence of HCV infection if it is considered along with a measure of HCV RNA (Patel et al., 2016). The test is most accurate in populations with a high incidence of HCV infection, such as for use among people who inject drugs, but it can be used in any population, provided the sample size is large enough.
There is a need for better information about disease burden and the care cascade of viral hepatitis in the United States, including likelihood of linkage to care, sustained virologic response, and risk of reinfection. Research on key populations could provide such information, especially if conducted as a complement to comprehensive public health surveillance. Such studies should be repeated periodically to monitor the situation. Viral hepatitis elimination will depend on an accurate understanding of the epidemic, including who is most affected and where. Identifying these people will become more difficult over time, as there will be fewer cases left to find. It is therefore essential to set up a sensitive surveillance system and to invest in a better understanding of viral hepatitis incidence and prevalence now, allowing for better targeted public health programs and an accurate baseline measure. Investments in measuring disease burden will pay off
more over time, when the success of the elimination program depends on finding an ever smaller group of patients.
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