Core Data Sources
AIDS Surveillance
Overview: AIDS is a reportable condition in all states and territories.
AIDS cases, reportable since the early 1980s, have been defined according to the
prevailing CDC surveillance case definition (last revised in 1993). The AIDS surveillance
system was established to monitor incidence and the demographic profile of AIDS,
describe the modes of HIV transmission among persons with a diagnosis of AIDS, guide the
development and implementation of public health intervention and prevention programs, and
assist in the assessment of the efficacy of public health interventions. AIDS surveillance
data are also used to allocate resources for Titles I and II of the Ryan White CARE Act.
State and local health departments actively solicit disease reports from
health care providers and laboratories. Standardized case report forms are used to
collect sociodemographic information, mode of exposure, laboratory and clinical
information, vital status, and referrals for treatment or services.
Population: All persons whose conditions meet the 1993 CDC AIDS
surveillance case definition
Strengths: Only source of AIDS information that is available in all areas
(states), these data reflect the effect of AIDS on a community and the trends of the epidemic
in a community. AIDS surveillance has been determined to be >85% complete. The
data include all demographic groups (age, race/ethnicity, gender).
Limitations: Because of the prolonged and variable period from infection
to the development of AIDS, trends in AIDS surveillance do not represent recent HIV
infections.
Asymptomatic HIV-infected persons are also not represented by AIDS case data.
In addition, incomplete HIV or CD4+ T-cell testing may interfere with the
representativeness of reporting. Further, the widespread use of highly active antiretroviral
therapy complicates the interpretation of AIDS case surveillance data and estimation
of the HIV/AIDS epidemic in an area. Newly reported AIDS cases may reflect treatment
failures or the failure of the health care system to halt the progression of HIV
infection to AIDS. AIDS cases represent late-stage HIV infections.
Where available: All 50 states; US territories; Chicago, District of
Columbia, Houston, Los Angeles, New York City, Philadelphia, San Francisco
Contact person(s): State or local health department, HIV/AIDS
surveillance coordinator
Reference: CDC.
Guidelines for national human immunodeficiency virus case surveillance, including monitoring for human immunodeficiency virus infection
and acquired immunodeficiency syndrome. MMWR 1999;48(RR No. 13):1–31.
HIV Surveillance
Overview: Reporting of HIV infections to local health authorities as an
integral part of AIDS surveillance activities has been recommended by CDC and other
professional organizations since HIV was identified and a test for HIV was licensed. As
part of ongoing active HIV surveillance, state and local health departments educate
providers on their reporting responsibilities, establish active surveillance sites,
establish liaisons with laboratories conducting CD4+ T-lymphocyte cell analysis and enzyme
immunoassay and Western blot testing and follow-up of HIV cases of epidemiologic importance.
Population: All persons who test positive for HIV
Strengths: HIV surveillance data, compared with AIDS surveillance data,
represent more recent infection. According to state evaluations, HIV infection reporting is
estimated to be >85% complete for persons who have tested positive for HIV. HIV surveillance
provides a minimum estimate of the number of persons known to be HIV infected and
reported to the health department, may identify emerging patterns of transmission, and can be
used to detect trends in HIV infections among populations of particular interest
(e.g., children, adolescents, women). These trends may not be evident from AIDS surveillance.
HIV surveillance provides a basis for establishing and evaluating linkages to the
provision of prevention and early intervention services and can be used to anticipate
unmet needs for HIV care.
Limitations: HIV surveillance data may underestimate the number of
recently infected persons because some infected persons either do not know they are infected or
have not sought testing. Persons who have tested positive at an anonymous test site
and have not sought medical care, during which they would be confidentially tested, are
not eligible to be reported to the surveillance system. HIV surveillance data represent
infections in jurisdictions that have reporting laws for HIV. HIV reporting laws differ by
jurisdiction; therefore, consultation with local surveillance staff on how to interpret
local HIV surveillance data is advised. Furthermore, reporting of behavioral risk
information may not be complete.
Where available: As of April 2003, 34 states (Alabama, Alaska, Arizona,
Arkansas, Colorado, Florida, Idaho, Indiana, Iowa, Kansas, Louisiana, Michigan,
Minnesota, Mississippi, Missouri, Nebraska, Nevada, New Jersey, New Mexico, New York,
North Carolina, North Dakota, Ohio, Oklahoma, Pennsylvania, South Carolina, South
Dakota, Tennessee, Texas, Utah, Virginia, West Virginia, Wisconsin, Wyoming);
American Samoa, Guam, Northern Mariana Islands, Puerto Rico, and the US Virgin Islands
have implemented HIV case surveillance, using the same confidential system for
name-based case reporting for both HIV infection and AIDS.
Connecticut implemented mandatory HIV reporting in January 2002. For adults
and adolescents ≥ 13 years of age, reporting is by name or code (if patients or
physicians prefer this method). For children <13 years of age and for persons who are
coinfected with tuberculosis (TB), reporting is by name. In New Hampshire, a case may be
reported by name or code.
Four states use names to initiate case reports and then convert to codes
(Delaware, Maine, Montana, Oregon), and 9 areas are using a coded identifier rather than
patient name to report HIV cases (California, Hawaii, Illinois, Kentucky, Maryland,
Massachusetts, Rhode Island, Vermont, and District of Columbia). In Washington, reporting of
persons with symptomatic HIV infection and of persons with AIDS is by name; a name-to-code
system is used to report asymptomatic HIV cases. Georgia plans to initiate HIV case
surveillance.
Contact person(s): State or local health department, HIV/AIDS
surveillance coordinator
Reference: CDC.
Guidelines for national human immunodeficiency virus case surveillance, including monitoring for human immunodeficiency virus infection
and acquired immunodeficiency syndrome. MMWR 1999;48(RR No. 13):1–31.
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