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Why was HepVu developed?
HepVu was developed to raise awareness about the Hepatitis C epidemic in the United States. The site provides data, interactive maps, and educational resources that illustrate the impact of Hepatitis C on states and inform efforts to improve access to prevention, screening, treatment, and care services.
As noted in the U.S. Department of Health and Human Services’ (HHS) National Viral Hepatitis Action Plan 2017-2020, limited epidemiological data for Hepatitis C remain a key barrier to effectively addressing the epidemic locally and nationally. The public health surveillance system for Hepatitis C is not as robust as it is for other infectious diseases, such as HIV, making it difficult to understand the full scope of the epidemic.
To help address this challenge, HepVu visualizes data related to Hepatitis C in the U.S., including standardized state-level estimates of people living with Hepatitis C infection from 2013 to 2016, stratified by age, sex, and race. Prevalence estimates were published by the Emory University Coalition for Applied Modeling for Prevention (CAMP) project, including researchers from the University at Albany, and developed with the Centers for Disease Control and Prevention (CDC). Stratified estimates were based on the methodology for the prevalence estimates and published in Hepatology Communications by researchers at Georgia State University, Emory University, CDC, and the University at Albany.
Valid estimates of the burden of Hepatitis C infection in each state are essential to inform policy, programmatic, and resource planning for elimination strategies across the U.S. HepVu is a Powered by AIDSVu project and shares the core mission of making data widely available, easily accessible, and locally relevant to inform public health decision-making.
Who created HepVu?
HepVu was developed by Emory University’s Rollins School of Public Health in partnership with Gilead Sciences, Inc. It is led by Dr. Patrick Sullivan, Professor of Epidemiology at Emory University and Co-Director of the CFAR Prevention Science Core.
Who advises the HepVu project?
HepVu and its sister site, AIDSVu, receive ongoing support and guidance from three groups consisting of key stakeholders and experts: the AIDSVu Advisory Committee, the AIDSVu Technical Advisory Group, and the AIDSVu Prevention and Treatment Advisory Committee. HepVu is also advised by working groups convened on specific topics, including viral hepatitis and opioids. The individuals who participate in these groups include representatives from federal government agencies, such as the U.S. Department of Health and Human Services, the U.S. Centers for Disease Control and Prevention, and the U.S. National Institutes of Health; state and local health departments; academic research institutions; and non-governmental organizations, such as the Kaiser Family Foundation, the National Association of State and Territorial AIDS Directors (NASTAD), and the Foundation for AIDS Research (amfAR).
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Hepatitis C Data
What data are available on HepVu?
HepVu maps state-level Hepatitis C prevalence estimates from 2013 to 2016, stratified by age, sex, and race. Prevalence estimates were obtained from the Emory University Coalition for Applied Modeling for Prevention (CAMP) project, including researchers from the University at Albany, and stratified prevalence estimates were developed by researchers at Georgia State University, Emory University, CDC, and the University at Albany. Both publications were collaborative efforts with researchers from the Centers for Disease Control and Prevention (CDC). Original prevalence estimates were published in the Journal of the American Medical Association (JAMA) Network Open and stratified estimates were published in Hepatology Communications.
HepVu also maps Hepatitis C-related mortality data (2017) and three opioid-related indicators that, together with HepVu’s Hepatitis C data, help illustrate the relationship between the opioid crisis and viral hepatitis in the U.S. The opioid-related data on HepVu include:
- Opioid prescription rate (2017)
- Narcotic overdose mortality rate (2013-2016)
- Pain reliever misuse prevalence (2015-2016)
HepVu’s Hepatitis C data can be visualized by rates and cases, by age, sex, and race, and alongside data comparison maps, including geographic comparisons, opioid-related indicators, and social determinants of health such as poverty, high school education, median household income, income inequality, and people without health insurance.
What do the data on HepVu reveal about Hepatitis C in the U.S.?
The data on HepVu show an estimated 2.3 million people living with Hepatitis C infection in the U.S. between 2013 and 2016, with a high burden in the West and in some Appalachian states. The data illustrate that the Hepatitis C epidemic continues to disproportionately impact males, the Baby Boomer population (those born between 1945 and 1969), Black Americans, and, increasingly, young persons in states highly affected by the opioid epidemic – a result of injection drug use.
Between 2013 and 2016:
- There were twice as many Hepatitis C infections among men than among women – a ratio that was consistent in nearly every state. Nationally, the rate of Hepatitis C prevalence was 1.3 percent for males and 0.6 percent for females.
- Hepatitis C prevalence was more than twice as high for Black Americans than for non-Black Americans, at 1.8 percent and 0.8 percent, respectively. Though Black Americans comprised 12 percent of the U.S. population, they represented 23 percent of Hepatitis C infections nationwide.
- 71 percent of infections were among Baby Boomers. Hepatitis C prevalence among Baby Boomers, at 1.6 percent, was three times higher than the prevalence among those born after 1969, at 0.5 percent.
- Younger Americans represent an increasing proportion of new Hepatitis C infections. In certain states, such as Kentucky, New Mexico, West Virginia, and Oklahoma, the Hepatitis C prevalence rate among people born after 1969 was twice as high as the national average for that age group – and the states have some of the highest opioid prescription rates in the country. This demonstrates the intersection of the growing burden of Hepatitis C among younger adults and the increasing misuse of opioids, as well as the sharing of needles and other equipment used to inject drugs.
- The Western U.S. had the highest rate of people with evidence of Hepatitis C infection, with 10 of the region’s 13 states having an estimated Hepatitis C prevalence rate above the national median.
- Nine states represented more than half, or 52 percent, of all people with Hepatitis C nationally (California, Florida, Michigan, New York, North Carolina, Ohio, Pennsylvania, Tennessee, and Texas) – and five of the nine states are in Appalachia.
Do you intend to update the data presented on HepVu?
HepVu will continue to add new data and features as they become available in the future, including additional opioid indicators and annually-updated mortality data. Other information, such as expert Q&A blogs and infographics, are frequently published on HepVu’s site and social media channels.
Why does HepVu primarily focus on Hepatitis C?
Visualizing the Hepatitis C epidemic is one of HepVu’s core areas of focus because it is one of the leading causes of liver-related death and illness in the U.S. According to CDC, the number of Hepatitis C-related deaths in 2013 was greater than the combined number of deaths from 60 other infectious diseases, including HIV and tuberculosis. More than half of those infected with Hepatitis C are not aware of their status. However, Hepatitis C is curable, making it especially important to use data to understand where additional screening, treatment, and prevention resources may be needed. Improving our understanding of the epidemic’s extent and geographic variations, as well as how it impacts different populations, can inform policy, programmatic, and resource planning for elimination strategies across the U.S.
Surveillance of all types of hepatitis is limited by a lack of comprehensive data due to limited resources and investment in standardized surveillance and variability in how states monitor hepatitis infections. At present, the best available hepatitis data pertains to Hepatitis C. HepVu currently provides infographics on Hepatitis A and B and is investigating opportunities to visualize Hepatitis A and B data in the future.
What is the difference between Hepatitis A, B, and C?
Please visit HepVu’s Hepatitis ABC’s page to learn more about the different forms of hepatitis.
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Where does the HepVu data come from?
The state-level Hepatitis C prevalence estimates displayed on HepVu were produced from the Emory University Coalition for Applied Modeling for Prevention (CAMP) project, including researchers from the University at Albany, and were developed in collaboration with the Centers for Disease Control and Prevention (CDC). Findings were published in the Journal of the American Medical Association (JAMA) Network Open in the paper, “Prevalence of Hepatitis C Virus Infection, US States and District of Columbia, 2013 – 2016.”
Building on this methodology, the state-level stratifications of Hepatitis C prevalence by age, sex, and race were developed by researchers at Georgia State University, Emory University, CDC, and the University at Albany and published in Hepatology Communications in the paper, “Hepatitis C virus prevalence in 50 U.S. states and D.C. by sex, birth cohort, and race: 2013–2016.”
State-level Hepatitis C mortality data (2017) were obtained from the WONDER online database system developed by CDC. State-level opioid indicators were sourced from CDC, the U.S. Census, and the Substance Abuse and Mental Health Services Administration (SAMHSA).
All data were compiled by researchers at the Rollins School of Public Health at Emory University. More information on the data sources can be found on the Data Methods page.
How is HepVu data different than other sources or what my state reports?
One of the most critical challenges in our national response to viral hepatitis is limited data that could help us understand and monitor the epidemic. HepVu attempts to close this gap by providing a standardized, state-by-state look at Hepatitis C in the U.S. The site also examines the critical role of the opioid epidemic and its impact on hepatitis and other blood-borne viruses.
All data available on HepVu are derived from systematic, high-quality, public data sources, and the Hepatitis C prevalence data and stratified estimates were developed in collaboration with CDC researchers. The data are peer-reviewed and publicly available, which differentiates HepVu from other sources of information on hepatitis – some of which may contain overlapping but not de-duplicated datasets and provide limited information on the origins of the data. Additionally, because the estimates on HepVu are largely based on blood test results from a household survey, they include both undiagnosed and diagnosed Hepatitis C infections.
Many states have their own unique methods for quantifying the number of Hepatitis C infections in their state. Methods based on locally available surveillance data may generate different results. As a result of the variability in approaches and data sources among individual states, it is difficult to compare results across jurisdictions. However, the systematic nature of the prevalence estimates and other data on HepVu provide an opportunity to quantify and compare the Hepatitis C epidemic across all 50 states and Washington, D.C.
How were the Hepatitis C prevalence estimates on HepVu generated?
The state-level Hepatitis C prevalence estimates displayed on HepVu are derived using an updated approach to the previously published methodology for 2010 state-specific Hepatitis C prevalence estimation that reflects current changes to the epidemic. To estimate state-level Hepatitis C prevalence, researchers analyzed blood test results from the nationally representative National Health and Nutrition Examination Survey (NHANES) and vital statistics data from 2013 through 2016, and incorporated data on Hepatitis C-related deaths and narcotic overdose deaths.
The researchers also estimated the number of Hepatitis C infections among populations not included in NHANES, including incarcerated, unsheltered homeless, and nursing home resident populations. These populations were calculated using a systematic literature review of articles published between 2013 and 2017, as well as other public data sources.
The state-level Hepatitis C prevalence stratifications by age, sex, and race were based on this methodology and additionally show how the previously mapped estimates of Hepatitis C infections by state are distributed by sex, age, and race.
Why are the Hepatitis C prevalence estimates from 2013-2016?
The most current NHANES Hepatitis C data are from 2016, but combining multiple years of data provides more information and increases the accuracy of estimates. The data on HepVu combined four years of data to develop the prevalence estimates and stratifications, and increase the robustness of the model.
Can I compare the 2013-2016 Hepatitis C prevalence estimates to the 2010 estimates?
No. The previously published methodology for 2010 state-specific Hepatitis C prevalence estimation was updated to derive the 2013-2016 estimates currently displayed on HepVu. While the basis of each model is NHANES, a number of other data sources were incorporated into the 2013-2016 modeling process to reflect current changes to the epidemic, including narcotic overdose mortality. Given the additional data sources used for 2013–2016 estimates, findings from the two data models are not comparable.
Why does HepVu show an estimated 2.3 million people living with Hepatitis C infection when CDC’s recent analysis shows 2.4 million?
This minor difference in national estimates is due to the different methods used to derive them. More complex methods that account for the different population characteristics of each state are required to distribute the national number of Hepatitis C infections to states, and adding these state-level estimates back up to a national estimate produces a slightly different national number.
Why do stratified estimates differ from the total number of Hepatitis C infections in individual states?
In some cases, the sum of the stratified estimates may be higher or lower than the overall estimated number of Hepatitis C infections for a state. For example, the estimated numbers of infections among males and females in a given state may, together, be higher than the estimated number of infections for that state. These apparent inconsistencies may happen because – to increase accuracy of the estimates by demographic characteristics – the model used for the stratified estimates includes more granular information on demographic groups by state and thus may yield slightly different results.
What is a model and how was it used to create the Hepatitis C prevalence estimates?
A model is a mathematical process that aims to predict or describe the dynamics in a system as accurately as possible using collected information (i.e., data). This particular approach uses a model to predict Hepatitis C prevalence in U.S. states using data from multiple sources: NHANES, the U.S. Census, and data on Hepatitis C-related deaths and narcotic overdose deaths.
Why does the map differ between rate and number of cases?
The scales in the legends for Hepatitis C-related mortality rates and cases differ because the rate (expressed as the number of cases per 100,000 people in the population) is an expression of the relative concentration of estimated deaths related to Hepatitis C in a state. The number of cases is the number of estimated deaths that occurred in people who had Hepatitis C. The rates can be useful for comparing the severity of the Hepatitis C epidemic in areas with different population sizes – such as comparing densely populated areas to a more sparsely populated one. The number of cases can identify areas where the greatest or fewest number of Hepatitis C-related deaths have occurred.
For example, in a state with fewer people but with a relatively large number of deaths related to Hepatitis C, the state may be shaded a dark purple when viewing the mortality rate. However, the same state may not appear dark purple when viewing the map by the total number of cases because the state has a smaller number of cases compared to other states.
Where can I get more information about the methods for the 2013-2016 Hepatitis C prevalence estimates and stratifications?
Findings were published in the Journal of the American Medical Association (JAMA) Network Open in the paper, “Prevalence of Hepatitis C Virus Infection, US States and District of Columbia, 2013 – 2016.” The paper and descriptions of the methodology can be viewed here. Additionally, stratified estimates were published in Hepatology Communications in the paper, “Hepatitis C virus prevalence in 50 U.S. states and D.C. by sex, birth cohort, and race: 2013–2016” and can be found here.
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Why does HepVu feature data and information about the opioid epidemic in the U.S.?
Hepatitis C and other infectious diseases are often-overlooked consequences of America’s opioid crisis. As the opioid epidemic continues to significantly impact communities in the U.S., new blood-borne virus infections related to drug use, including hepatitis and HIV, are concerning. Though Hepatitis C has primarily impacted Baby Boomers (those born between 1945 and 1965) in the past, the largest increases in Hepatitis C infections over the last decade have been among individuals less than 40 years old. This is due in part to the increasing misuse of opioids and, in turn, the sharing of needles and other equipment used to inject drugs.
HepVu believes it is critical to understand this syndemic to highlight the causal connection between the increases in opioid use and blood-borne viruses, particularly Hepatitis C, in order to inform public health decision-making and raise greater awareness about the infectious disease consequences of the opioid epidemic.
To learn more, please visit our Deeper Look: Opioids page.
Why use 2006-2010 ACS data for population estimates?
NHANES uses data from the American Community Survey (ACS) to calculate weights and population totals. NHANES is a national representative survey of the civilian noninstitutionalized U.S. population and ACS population totals can be used to estimate population totals (stratified by state and demographic group) for this population by excluding respondents in institutionalized group quarters. The 2006-2010 5-year ACS estimates include data collected continuously over the entire time period, which results in a sufficient sample size to calculate reliable estimates at small geographies.
What do each of the opioid indicators show?
HepVu currently visualizes three state-level opioid indicators. The first, opioid prescription rate, shows retail opioid prescriptions dispensed per 100 persons in each state in 2017. These data were sourced from CDC.
The second, narcotic overdose mortality rate, shows the number of drug overdose-related deaths per 100,000 persons in each state. These data were sourced from CDC WONDER and the U.S. Census (2013-2016).
The third is misuse of pain relievers prevalence, which shows the percentage of persons misusing prescription pain relievers in each state. These data represent the 2015-2016 year average and were sourced from the Substance Abuse and Mental Health Services Administration (SAMHSA), a branch of the U.S. Department of Health and Human Services.