HepVu

An estimated 3.5 million people in the U.S. are living with chronic Hepatitis C infection.

2021 Viral Hepatitis
Surveillance Status Report

An assessment of the status of viral hepatitis surveillance practices across U.S. jurisdictions in 2021

To download the full report Click Here

Released October 2022

An estimated 2.4 million people in the U.S. are living with hepatitis C infection, while up to 1.59 million people could be living with hepatitis B in the U.S. The need for expanded, standardized, and reliable viral hepatitis surveillance continues to impact public health efforts, resources, and response across the U.S. to this epidemic. A lack of robust surveillance data limits the ability to:

Monitor the disease
burden and related
disparities

Mount effective public
health responses

Track changes
in the epidemic

Eliminate viral hepatitis
epidemic in the U.S.

Monitor the disease burden and related disparities

Mount effective public health responses

Track changes in the epidemic

Eliminate viral hepatitis epidemic in the U.S.

In 2021, the Centers for Disease Control and Prevention (CDC) released funding for viral hepatitis surveillance across 59 jurisdictions. Prior to 2021, only 14 states received federal funding specifically for viral hepatitis surveillance. This inaugural viral hepatitis surveillance status report benchmarks the state of viral hepatitis surveillance in the U.S. prior to funding dissemination, establishes a baseline to monitor changes over time as additional resources are allocated, assesses how jurisdictions across the U.S. are measuring the impact of viral hepatitis on their communities, and highlights areas in need of additional resources.

Viral Hepatitis Surveillance Vision

Viral hepatitis surveillance programs need to be expanded to help ensure effective prevention and treatment of hepatitis infections. Collecting information through surveillance can help us to answer questions like:

Question

Information needed to answer

Information needed to answer

  • Positive viral hepatitis laboratory test results
  • Negative viral hepatitis laboratory test results
  • Deaths among people with viral hepatitis

How many people have current,
diagnosed viral hepatitis infections?

  • Positive viral hepatitis laboratory test results
  • Negative viral hepatitis laboratory test results
  • Deaths among people with viral hepatitis

Information needed to answer

  • Laboratory test results and clinical information indicating whether
    a viral hepatitis infection is acute (new) or chronic
  • Information such as sex, race/ethnicity, age, pregnancy status,
    risk factor, etc. connected to test results

What are the characteristics of people living,
with, and who have increased chances of
getting, a viral hepatitis infection?

  • Laboratory test results and clinical information indicating whether
    a viral hepatitis infection is acute (new) or chronic
  • Information such as sex, race/ethnicity, age, pregnancy status,
    risk factor, etc. connected to test results

Information needed to answer

  • Positive hepatitis C laboratory test results
  • Negative hepatitis C laboratory test results
  • Laboratory test results and clinical information indicating whether a
    hepatitis C infection is acute (new) or chronic
  • Information such as sex, race/ethnicity, age, pregnancy status,
    risk factor, etc. connected to test results
  • Deaths among people with hepatitis C
  • Positive hepatitis C laboratory test results
  • Negative hepatitis C laboratory test results
  • Laboratory test results and clinical information indicating whether a
    hepatitis C infection is acute (new) or chronic
  • Information such as sex, race/ethnicity, age, pregnancy status,
    risk factor, etc. connected to test results
  • Deaths among people with hepatitis C

Information needed to answer

  • Positive hepatitis C laboratory test results
  • Negative hepatitis C laboratory test results
  • Laboratory test results and clinical information indicating whether a
    hepatitis C infection is acute (new) or chronic
  • Information such as sex, race/ethnicity, age, pregnancy status,
    risk factor, etc. connected to test results
  • Deaths among people with hepatitis C

Information needed to answer

  • Positive hepatitis C laboratory test results
  • Negative hepatitis C laboratory test results
  • Laboratory test results and clinical information indicating whether a
    hepatitis C infection is acute (new) or chronic
  • Information such as sex, race/ethnicity, age, pregnancy status,
    risk factor, etc. connected to test results
  • Deaths among people with hepatitis C

How many people have received treatment
for hepatitis C?

How many people need treatment
for hepatitis C?

Which groups of people are most in need
of treatment for hepatitis C?

How many people have achieved sustained
virologic response (SVR) or been cured of
their chronic hepatitis C infection?

  • Positive hepatitis C laboratory test results
  • Negative hepatitis C laboratory test results
  • Laboratory test results and clinical information indicating whether a
    hepatitis C infection is acute (new) or chronic
  • Information such as sex, race/ethnicity, age, pregnancy status,
    risk factor, etc. connected to test results
  • Deaths among people with hepatitis C

A robust viral hepatitis surveillance system can help us to understand:

The burden of viral hepatitis

Which groups of people have increased chances
of getting viral hepatitis infections

How many people need care and treatment for
viral hepatitis

Inequities in hepatitis prevention, care, and treatment

The survey conducted to inform this report reveals what kinds of viral
hepatitis surveillance practices are happening in jurisdictions across
the U.S., where gaps exist, and where resources are needed.

2021 Program
Funding

HIV Surveillance & Prevention Funding

$400M*

Viral Hepatitis Surveillance & Prevention Funding

About $23M**

https://www.cdc.gov/hiv/pdf/funding/announcements/ps18-1802/cdc-hiv-ps18-1802-factsheet.pdf
https://www.cdc.gov/hepatitis/policy/2103_CoAg-FundingAmounts.htm

HIV: An Example of Robust Surveillance

National HIV surveillance provides an illustrative example of
effective surveillance practices and how surveillance can be
used for prevention and treatment.

HIV surveillance consists of complementary systems to
capture information about people who have an HIV infection or
an increased chance of getting an HIV infection. These systems
provide information that allow us to understand characteristics
of people that are:

Diagnosed
with HIV

At increased risk
for acquiring HIV

Receiving care and
treatment for HIV

In need of prevention
care, and treatment
for HIV

This information is compiled from multiple CDC-funded
HIV data systems and other data sources. Summary data
are disseminated to other federal, state, and local partners
to inform policies, program planning, and resource allocation
for preventing and treating HIV infections.

About

HepVu and NASTAD collaborated to create this first-ever viral hepatitis surveillance
status report. HepVu is an interactive online mapping tool that visualizes the impact
of the viral hepatitis epidemics on communities across the United States to promote
data-driven public health decision-making. NASTAD is a leading non-partisan non-profit
association that represents public health officials who administer HIV and viral hepatitis programs in the U.S. to end HIV/AIDS, viral hepatitis, and intersecting epidemics.
We worked with a steering committee comprised of state and local health department
representatives, national policy/advocacy organizations, and researchers to develop
a set of indicators for survey measurement, determine process, develop a survey, and disseminate results.

In March 2022, a survey requesting information on hepatitis B and C surveillance practices in 2021 (January-June) was sent to 59 state, local, and
territorial jurisdictions across the U.S., and 95% of jurisdictions responded. Data were processed by Emory University and compared to additional
indicators like prior viral hepatitis funding, overdose mortality, and other factors. Moving forward, HepVu and NASTAD will collect data from
jurisdictions on these indicators each year, analyze the results, and prepare a status report describing findings nationally and by jurisdiction.

Findings

Capacity

Staff and dedicated time are needed to perform basic
surveillance activities, such as disseminating state and
local information about viral hepatitis cases and linking
viral hepatitis records with other databases to collect
additional information about cases.

Capacity level impacts the ability to answer questions about:

Burden of disease

Who is at increased risk

Who needs treatment

1/3 of jurisdictions did not have a full-time employee (FTE) dedicated to viral hepatitis surveillance.

Just over half (55%) of jurisdictions were able to produce annual surveillance summaries.

Only 2/3 of jurisdictions were able to conduct any data matching* with viral hepatitis surveillance records.

* E.g., matching viral hepatitis surveillance records to death records

Investigating newly diagnosed viral hepatitis cases through medical records or interviews can provide information about patient risk factors and
their needs for prevention, care, and treatment. Interviewing people with recent diagnoses can also help public health programs contact sexual,
household, or injection partners that may also be at risk for infection.

Only 30% of jurisdictions were able to review medical record
data for people with suspected acute (new) hepatitis B and
contact people who may have been exposed to hepatitis B

Only 20% of jurisdictions were able to review medical record data for people with suspected acute (new) hepatitis C and
contact people who may have been exposed to hepatitis C.

Only 30% of jurisdictions were able to review medical record
data for people with suspected acute (new) hepatitis B and
contact people who may have been exposed to hepatitis B

Percentage of Jurisdictions Who Were Able to Conduct
Investigations into Suspected Acute (new) Hepatitis B Cases

0 10% 20% 30% 40% 50% 60% 70% 80% 80% 36% 30%

Were able to review medical records or
contact patient’s healthcare provider

Were able to contact people
who may have been exposed

Were able to review clinical data and
contact people who may have been exposed

Only 20% of jurisdictions were able to review medical record data for people with suspected acute (new) hepatitis C and
contact people who may have been exposed to hepatitis C.

Percentage of Jurisdictions Who Were Able to Conduct
Investigations into Suspected Acute (new) Hepatitis C Cases

0 10% 20% 30% 40% 50% 60% 70% 80% 71% 23% 20%

Were able to review medical records or
contact patient’s healthcare provider

Were able to contact people
who may have been exposed

Were able to review clinical data and
contact people who may have been exposed

Chart Key

Were able to review medical records or
contact patient’s healthcare provider

Were able to contact people
who may have been exposed

Were able to review clinical data and
contact people who may have been exposed

Elimination Goals

Effective vaccines are available for hepatitis A and B, successful therapies for hepatitis B, and
curative treatment for hepatitis C. These tools make it possible to eliminate viral hepatitis.
According to the World Health Organization (WHO), viral hepatitis elimination is defined as
a 90% reduction in new infections and a 65% reduction in hepatitis-related deaths. The
Viral Hepatitis National Strategic Plan for the United States: A Roadmap to Elimination (2021–2025)
outlines a plan for strategic coordination towards achievement of our nation’s elimination goals
Jurisdictional elimination plans and goals are important benchmarks for establishing localized
approaches that support elimination.

In 2021, there were 24 (43%)
jurisdictions with viral hepatitis
elimination plans. Of jurisdictions
that established elimination goals,
64% were funded for surveillance
activities prior to 2021.

Hepatitis elimination goals may be particularly
important in jurisdictions hardest hit by the
opioid epidemic where viral hepatitis infections
are increasing. In 2021, 58% of jurisdictions
without established elimination goals were
also in the top 1/3 of states with the highest
drug overdose mortality in 2020.

Established elimination goals
can increase political will for
answering questions like:

How many people need
care or treatment?

Which groups of people
are most in need of care
care or treatment?

Dedicated Staffing

Jurisdictions with funding and resources for at least one full-time employee (FTE) dedicated to viral hepatitis surveillance were more likely to
produce and disseminate information on viral hepatitis prevalence.

2021 Viral Hepatitis Data Dissemination Activities by Staffing

Jurisdictions With at Least One FTE

0 10% 20% 30% 40% 50% 60% 70% 80% 71% 68% 76%

Produced annual surveillance summaries

Summarized annual number of hepatitis B cases

Summarized annual number of hepatitis C cases

Jurisdictions Without One FTE

0 10% 20% 30% 40% 50% 60% 70% 80% 22% 28% 22%

Produced annual surveillance summaries

Summarized annual number of hepatitis B cases

Summarized annual number of hepatitis C cases

Chart Key

Produced annual surveillance summaries

Summarized annual number of hepatitis B cases

Summarized annual number of hepatitis C cases

Jurisdictions with funding and resources for at least one FTE are more likely to receive and use negative viral hepatitis laboratory results, which
help public health programs know if subsequent positive laboratory tests are the result of new infections. These negative laboratory results also
provide information about people whose hepatitis C has been cured.

2021 Viral Hepatitis Labs Usage by Staffing

Jurisdictions With at Least One FTE80%60%40%20% 60%48%67%73%

Received hepatitis B negative
laboratory results

Used hepatitis B negative
laboratory results

Received hepatitis C negative
laboratory results

Used hepatitis C negative
laboratory results

80% 60% 40% 20% Jurisdictions Without One FTE 45% 9% 18% 55%

Received hepatitis B
negative laboratory results

Used hepatitis B
negative laboratory results

Received hepatitis C
negative laboratory results

Used hepatitis C
negative laboratory results

Chart Key

Received hepatitis B
negative laboratory results

Used hepatitis B
negative laboratory results

Received hepatitis C
negative laboratory results

Used hepatitis C
negative laboratory results

Staffing level impacts the ability
to answer questions about:

Current
diagnoses

Who is at
increased risk

Who is in or out
of treatment

Data Dissemination

Alongside establishing elimination goals, publishing annual surveillance summaries for viral hepatitis and estimates for hepatitis B and C infections are important for informing programmatic planning and resource allocation. Funding and staffing for surveillance allows jurisdictions to produce these important summaries and estimates.

Among jurisdictions that did not produce annual surveillance summaries or estimates for hepatitis B or C infections in 2021 nearly half were in the top 1/3 of states with the highest overdose mortality in 2020.

Ability to disseminate data impacts the ability to answer questions about Current burden of disease:

Produced Annual
Surveillance Summaries

Summarized Annual Number of
Hepatitis B Cases

Summarized Annual Number
of Hepatitis C Cases

Produced Annual
Surveillance Summaries

Previously Funded Jurisdictions*

0 20% 21% 79% 40% 60% 80%

Previously Unfunded Jurisdictions

0 20% 50% 48% 40% 60% 80%

Produced annual surveillance summaries

Did not produce annual surveillance summaries

Produced annual surveillance summaries

Did not produce annual surveillance summaries

Summarized Annual Number of
Hepatitis B Cases

Previously Funded Jurisdictions*

0 20% 36% 64% 40% 60% 80%

Previously Unfunded Jurisdictions

0 20% 45% 52% 40% 60% 80%

Summarized annual number of hepatitis B cases

Did not summarize annual number of hepatitis B cases

Summarized annual number of hepatitis B cases

Did not summarize annual number of hepatitis B cases

Summarized Annual Number
of Hepatitis C Cases

Previously Funded Jurisdictions*

0 20% 29% 71% 40% 60% 80%

Previously Unfunded Jurisdictions

0 20% 45% 55% 40% 60% 80%

Summarized annual number of hepatitis C cases

Did not summarize annual number of hepatitis C cases

Summarized annual number of hepatitis C cases

Did not summarize annual number of hepatitis C cases

Previously Unfunded Jurisdictions

0 20% 50% 48% 40% 60% 80%

Produced annual surveillance summaries

Did not produce annual surveillance summaries

Previously Unfunded Jurisdictions

0 20% 45% 52% 40% 60% 80%

Summarized annual number of hepatitis B cases

Did not summarize annual number of hepatitis B cases

Previously Unfunded Jurisdictions

0 20% 45% 55% 40% 60% 80%

Summarized annual number of hepatitis C cases

Did not summarize annual number of hepatitis C cases

*Previously funded jurisdictions include 14 states that received federal funding specifically for viral hepatitis surveillance before 2021

Pregnancy Status Data

Collecting information about pregnancy status and connecting it to viral hepatitis case records allows providers to screen for hepatitis C in pregnancy and implement post-partum treatment plans for the parent and child in accordance with current recommendations. Meanwhile, less than half (45%) of jurisdictions were required in 2021 to report pregnancy status with hepatitis C cases. Of jurisdictions that were in the top 1/3 of states with the highest overdose mortality in 2020, 68% did not require pregnancy status as a reportable conditionfor hepatitis C in 2021. Collecting information about pregnancy status may
be particularly important in jurisdictions hardest hit by the opioid epidemic where viral hepatitis infections are increasing.

Pregnancy Status Data

Collecting information about pregnancy status and connecting
it to viral hepatitis case records allows providers to screen
for hepatitis C in pregnancy and implement post-partum
treatment plans for the parent and child in accordance with
current recommendations. Meanwhile, less than half (45%)
of jurisdictions were required in 2021 to report pregnancy
status with hepatitis C cases.

Of jurisdictions that were in the top 1/3 of states with the
highest overdose mortality in 2020, 68% did not require
pregnancy status as a reportable condition for hepatitis C
in 2021. Collecting information about pregnancy status may
be particularly important in jurisdictions hardest hit by the
opioid epidemic where viral hepatitis infections are increasing.

2021 Pregnancy Status as Reportable Condition for
Hepatitis C by Overdose Mortality

32% 68%

Jurisdictions
in the top 1/3 of
states (highest
mortality rate)

53% 47%

Jurisdictions
in the bottom 2/3
of states (lowest
mortality rate)

Chart Key

Do not require pregnancy
status as a reportable condition

Require pregnancy status
as a reportable condition

Do not require pregnancy
status as a reportable condition

Require pregnancy status
as a reportable condition

Recommendations to Improve U.S. Viral Hepatitis Surveillance

Expanded, standardized, and reliable viral hepatitis surveillance is necessary to promote effective public health efforts, identify resource needs,
and support response across the US. to this epidemic. While public health professionals are doing commendable surveillance work with currently
available resources, this report showcases the need for additional funding and resources. Based on this benchmark of the state of viral hepatitis
surveillance in the U.S. prior to CDC funding nationwide viral hepatitis surveillance, it is recommended to:

Monitor disease burden
utilizing new CDC funding

Track changes
in the epidemic

Adjust where federal resources are
allocated as needed and increase funding
for viral hepatitis surveillance

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