Hepatitis C Policy Project: Priority Issues

Improving Hepatitis C Data and Surveillance

Hepatitis C can be eliminated in the US, but ONLY if quality data is available to develop effective strategies.


Hepatitis C (HCV) is a contagious, blood-borne infection that causes inflammation and scarring of the liver. Hepatitis C is the most common blood-borne infection in the U.S. and is the leading cause of cirrhosis, liver cancer, and liver transplantation. In the United States, there are more deaths from Hepatitis C than all of the other 60 notifiable infectious diseases combined, including HIV. The Centers for Disease Control and Prevention (CDC) estimates that between 2.5 and 4.7 million Americans are infected with HCV. One of the primary reasons for this broad range of estimates is the lack of adequate surveillance capacity and data collection on new cases of HCV as well as lack of information about locations where high rates of transmission occur. In addition, there is a lack of detailed and reliable data on risk factors or other contributing factors that can explain the latest trends in HCV infection rates and provide clues into ways that programmatic and policy efforts can most effectively address the critical needs of those who are at greatest risk of the illness. The CDC cannot mandate that states report disease statistics, however the majority of states and territories do. In 2014, 40 states reported to the CDC new acute cases of HCV in their jurisdictions. However, the accuracy, comprehensiveness, and consistency of these reports vary, which makes analysis of the information difficult. In 2012, the CDC funded seven jurisdictions – Florida, Massachusetts, New York, Michigan, San Francisco, Philadelphia, and Washington (state)– to conduct enhanced, or active, Hepatitis B and C surveillance for a 4-year period. In these jurisdictions, laboratories were mandated to report positive Hepatitis B and C cases to state or local health departments. The health departments then confirmed the cases and ensured that the reported cases were of new infections. From these seven sites, the CDC was able to start to piece together an understanding of the disease burden of HCV in this country. In 2017, the CDC expanded this enhanced surveillance program to fund fourteen states – Florida, Georgia, Indiana, Kentucky, Louisiana, Massachusetts, New Jersey, North Carolina, Ohio, Oklahoma, Tennessee, Utah, Washington, and West Virginia. This supplemental data collection, however, is not without its flaws. Each jurisdiction varies in the extent of investigation it undertakes, with some not even providing basic demographic information such as race/ethnicity or age. Thus, even in these jurisdictions, there are missed opportunities to gain a complete picture of ongoing epidemiological trends.

"Surveillance for viral hepatitis could improve understanding of the true burden of disease across the care cascade."

National Academies of Sciences, Engineering, and Medicine. 2016.

Eliminating the public health problem of hepatitis B and C in the United States: Phase one report.

Monitoring: Collecting infection rates and other data. Surveillance: The use of case data to determine disease trends, risk factors, outbreak sources, etc. Strategy: Developing data-informed strategies to reduce incidence of transmission.

Recently, the CDC began purchasing and compiling HCV data from laboratories that conduct testing and health insurers. CDC uses the HCV cases and other information identified through these various sources along with surveillance data to analyze the HCV care cascade, and to estimate new HCV diagnoses in young adults, who are a group at high risk of new infections. While these data are a needed contribution, they are still only a fraction of the information needed to most effectively respond to HCV in the United States.

In 2016 and 2017, the National Academy of Sciences, Engineering, and Medicine released reports on the feasibility of eliminating Hepatitis C as a critical public health issue in the US. One of the most significant challenges to this goal is the lack of comprehensive statistical information on the impact of this disease within the population. Much like polio and tuberculosis are no longer severe health threats in the US, the availability of highly tolerable and effective cures make elimination of Hepatitis C from the population an attainable goal. However, accurate data is needed to identify those who need to be treated and to know where and how to prevent new infections in order for this to become reality.

A comprehensive data monitoring and surveillance system for Hepatitis C would better inform policy decisions on how to best address the HCV epidemic, such as identifying risk behaviors and determining types of resources that are needed in particular areas to most effectively address prevention and treatment needs.

Reliable data on HCV infections in the U.S. also would provide a factual basis for decision-making and enable the public to better grasp the urgency of responding to the epidemic in our midst. Improved data also could lessen the stigmatization of infected individuals that result from lack of information and lack of public education about the illness.

External Resources

National Academies of Sciences, Engineering, and Medicine.

2016. Eliminating the public health problem of hepatitis B and C in the United States: Phase one report

A National Strategy for the Elimination of Hepatitis B and C: Phase Two Report

CDC 2014 Viral Hepatitis Surveillance Report

HepVu – Maps to visualize the Hepatitis C epidemic in the U.S.

Report

Monitoring the Hepatitis C Epidemic in the United States: What Tools Are Needed to Achieve Elimination?

Cover of: Monitoring the Hepatitis C Epidemic in the United States

Key Points

HCV Surveillance and Monitoring

HCV is the most prevalent cause of viral hepatitis infections in the US and can cause severe health complications such as liver cancer or death. 3.5 million Americans have HCV infection and an estimated 33,900 acute cases (newly-acquired infections within 6 months of a previously negative test) were diagnosed in 2014 alone.

1) Chronically infected baby boomers and newly-infected individuals represent two distinct epidemics in the US: Most cases of HCV are in baby boomers, yet most new infections arise among people who inject drugs, which calls for tailored interventions to reach and serve these populations.

2) Recently approved direct-acting agents are remarkably successful at curing people with HCV infection: Between 94-99% of persons who successfully complete a course of treatment (typically 12 or 24 weeks of daily drug therapy) maintain HCV viral loads in their bloodstream at at "undetectable" levels.

3) National monitoring of HCV trends relies on a small number of states and must be strengthened: While 40 states provide acute HCV case report data to the Centers for Disease Control and Prevention (CDC), resource limitations mean that only 5 states and two local jurisdictions are funded to provide more detailed surveillance data.

4) Eliminating HCV in the US is possible: Strategic investments are needed to realize the potential to treat and cure all people living with HCV. This would yield enormous benefits by producing a healthier population and avoiding preventable health expenditures associated with treatment of liver disease and organ transplantation.

  1. Homie Razavi, et. al., Chronic Hepatitis C Virus (HCV) Disease Burden and Cost in the United States, Hepatology, June 2013, at 2164.
  2. U.S. Department of Health and Human Services, Viral Hepatitis Blog, http://www.hhs.gov/hepatitis/blog/2016/05/06/hepatitis-c-kills-more-americans-than-any-other-infectious-disease.html.
  3. U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, Viral hepatitis – Hepatitis C Information, http://www.cdc.gov/hepatitis/hcv/cfaq.htm.
  4. Per information received from CDC Office of Viral Hepatitis, March 2017.