Data on newly reported hepatitis C (HCV) cases on the HCV Dashboard are obtained from the NYS Department of Health (NYS DOH) and the NYC Department of Health and Mental Hygiene (DOHMH). Case data reflect only newly reported cases and are not intended to represent disease incidence (all new infections) nor prevalence (all persons currently infected). These data are not intended to directly measure the three HCV elimination metrics.
Data used to measure the HCV elimination metrics will be obtained from the Hepatitis Elimination and Epidemiology Dataset (HEED). Learn more about HEED.
Data on deaths caused by hepatitis C and liver cancer are obtained from the National Center for Health Statistics, Multiple Causes of Death file; the NYC DOHMH Vital Statistics, Mortality Data (Death Data) file; and the New York State Cancer Registry.
SURVEILLANCE DATA
Case Definitions
NYS DOH and NYC DOHMH surveillance data follow the case definitions described by the CDC for chronic, acute, and perinatal hepatitis C infection. Standardized case definitions change over time, which results in counting cases differently and can impact the number of cases reported in each year. Case definitions for acute/chronic cases were most recently updated in 2020; case definition for perinatal cases was updated in 2018. Case definitions changed significantly in 2016. Comparing counts or rates of newly reported hepatitis C reported during 2016-2019 to those reported during 2015 and earlier years should be done with caution.
NYS (excluding NYC) case counts and rates at the regional and county level exclude persons incarcerated in the Department of Corrections and Community Supervision (DOCCS). NYC case counts and rates include persons incarcerated in DOCCS.
Chronic, acute, and perinatal hepatitis C cases are reported on the HCV Dashboard.
Data Stratifications
Newly Reported HCV
The HCV Dashboard displays newly reported HCV case counts and rates at the statewide and citywide levels, as well as by region, county, borough, and neighborhood tabulation area (NTA).
At the statewide level (excluding NYC), newly reported HCV case rates can be stratified by sex and age; newly reported HCV case counts can be stratified by sex, age, race, ethnicity, and risk.
At the citywide level, newly reported HCV case rates and case counts can be stratified by sex, age, and poverty level.
Sex at birth is defined as male; female; or unknown/missing, and is obtained from laboratory report. Gender information is not collected.
Age groups are defined as <3 years; 3-9 years; 10-19 years; 20-29 years; 30-39 years; 40-49 years; 50-59 years; 60-69 years; and 70+ years at the time of case reporting to the NYS DOH.
Race and ethnicity are recorded separately. Race categories are defined as American Indian/Alaskan Native; Asian/Pacific Islander; Black; White; Other; and Unknown. Race is not required for laboratory reporting. As such, a large percentage of cases are missing this information, and caution should be interpreted when evaluating patterns by race.
Race and ethnicity are recorded separately. Ethnicity categories are defined as Hispanic; Non-Hispanic; and Unknown. Ethnicity is not required for laboratory reporting. As such, a large percentage of cases are missing this information, and caution should be interpreted when evaluating patterns by ethnicity.
Risk factor information is collected using multiple methods, including review of records, patient interviews, or health care provider interviews. Surveillance data quality is affected by a provider’s incomplete knowledge of the patient’s risks, misinterpretation of the question, and other forms of inaccuracies. Because of this, risk factor data are often incomplete, and caution should be taken when interpreting risk information.
For acute cases, risk factors are determined for the 6-month period before illness onset or test conversion. Acute risk factors include Injection drug use; Non-injection drug use; Close contact with person with HCV; Ever incarcerated; Tattoo or body piercing; More than 1 sex partner; Gay or bisexual male; Underwent hemodialysis; Diabetic; Treated for STI; Worked in public safety or medical field.
For chronic cases, lifetime risk is assessed. Chronic risk factors include Injection drug use; Non-injection drug use; Close contact with person with HCV; Ever incarcerated; MSM (Men who have sex with men); Underwent hemodialysis; Diabetic; Treated for STI; Transfusion, transplant, or clotting factor recipient.
Sex at birth is defined as male or female. Sex at birth is obtained from laboratory report. Gender is not consistently reported by all laboratories and is not included. People reported as transgender are excluded. In 2019, two transgender people were newly reported with chronic HCV.
Age groups are defined as <3 years; 3-19 years; 20-29 years; 30-39 years; 40-49 years; 50-59 years; 60-69 years; and 70+ years at the time of case reporting to the NYC DOH.
Neighborhood poverty level is based on ZIP code and is reported as the percentage of residents with incomes below 100% of the Federal Poverty Level (FPL), per American Community Survey data from 2013 to 2017. Poverty level categories are defined as Low (less than 10% below FPL); Medium (10% to <20% below FPL); High (20% to <30% below FPL); Very high (≥30% below FPL); and Unknown.
Deaths
The HCV Dashboard allows users to explore the number or rate of deaths attributed to HCV at the statewide and citywide levels. At the statewide and citywide levels, the number of deaths and death rate per 100,000 pop. can be stratified by sex assigned at birth, age at death, or race/ethnicity.
Sex at birth is defined as male or female. Gender information is not collected.
Age at death categories are defined as < 25 years; 25-44 years; 45-64 years; 65-84 years; and 85+ years at time of death.
Race/ethnicity are recorded together. For most recent annual data, race/ethnicity categories are defined as American Indian/Alaskan Native; Asian/Pacific Islander; Black, Non-Hispanic; Hispanic; and White, Non-Hispanic. For trends data, race/ethnicity categories are defined as Black; Hispanic; and White.
HEPATITIS ELIMINATION AND EPIDEMIOLOGY DATASET (HEED)
Both the diagnoses and treatment metrics will utilize HEED, a newly developed statewide dataset designed to support HCV Elimination plan efforts by accounting for individuals with a history of, or current, hepatitis C infection.
Currently, clinical laboratories in NYS are required by state and local regulations to report positive HCV antibody test results and positive and negative HCV RNA test results to the New York State Department of Health (NYS DOH) through the Electronic Clinical Laboratory Reporting System (ECLRS). For NYS, newly identified HCV acute cases are investigated and data on chronic HCV cases is collected by local health departments. For NYC, in recent years the New York City Department of Health and Mental Hygiene (NYC DOHMH) has conducted enhanced surveillance on a sample of reported cases aged 18-34. In both jurisdictions, demographic information about HCV cases, including race/ethnicity information or selected risk factors, is collected during case investigations. Local health departments across NYS use the NYS Communicable Disease Electronic Surveillance System (CDESS) and NYC DOHMH uses MAVEN, a different electronic surveillance system, to collect and report case surveillance data.
HEED is developed using laboratory data from ECLRS and case surveillance data from CDESS and MAVEN. HEED is updated annually using data from both the NYS DOH and NYC DOHMH to establish the total number of persons living with hepatitis C infection statewide.
