Surveillance of HIV Infection (not AIDS)

This report includes case reports from 39 areas that had laws or regulations requiring confidential reporting by name for adults and adolescents and/or children with confirmed HIV infection (not AIDS), in addition to the reporting of persons with AIDS. Connecticut required reporting by name for children <13 years of age. After removal of personal identifying information, these reports were submitted to CDC (see Table 15 for list of areas). The implementation of HIV reporting has differed from state to state. Before 1991, surveillance of HIV infection (not AIDS) was not standardized, and the reporting of HIV infections (not AIDS) was based primarily on passive surveillance. The information on many of the cases reported before 1991 is not complete. Since then, CDC has assisted states in conducting active surveillance of HIV infections (not AIDS) by the use of standardized report forms and software.

Data on HIV infection (not AIDS) should be interpreted with caution. HIV surveillance reports may not be representative of all persons infected with HIV because not all infected persons have been tested. Many HIV-reporting states offer anonymous HIV testing, and home-collection HIV test kits are widely available in the United States. The results of anonymous tests are not reported to the confidential name-based HIV registries of state and local health departments. Therefore, reports of confidential test results may not represent all persons who tested positive for HIV infection. Furthermore, many factors, including the extent to which testing is routinely offered to specific groups, may influence testing patterns and the availability of, and access to, medical care and testing services. These data provide a minimum estimate of the number of persons known to be HIV infected in states with confidential HIV reporting.

As of December 31, 2002, 10 areas (California, Hawaii, Illinois, Kentucky, Maryland, Massachusetts, Rhode Island, Vermont, the District of Columbia, and Puerto Rico) had implemented a code-based system to conduct case surveillance for HIV infection (not AIDS). Other areas (Delaware, Maine, Montana, Oregon, and Washington) had implemented a name-to-code system for conducting HIV infection surveillance: initially, names are collected and, after any necessary public health follow-up, names are converted to codes. Connecticut allows cases of HIV infection (not AIDS) in adults and adolescents to be reported by name or code; New Hampshire allows HIV cases to be reported with or without a name. Data on cases of HIV infection (not AIDS) from these areas are not included in the HIV data tables pending evaluations demonstrating acceptable performance under CDC guidelines and the development of methods for reporting such data to CDC.

For this report, cases in adults, adolescents, and children >18 months of age were classified by using the 2000 revised HIV surveillance case definition, which incorporates positive test results or reports of a detectable quantity of HIV nucleic acid or plasma HIV RNA [1]. For children <18 months of age, the pediatric HIV reporting criteria reflect diagnostic advances that permit the diagnosis of HIV infection during the first months of life. By the use of HIV nucleic acid detection tests, HIV infection can be detected in nearly all infants aged 1 month and older. The timing of the HIV serologic and HIV nucleic acid detection tests specified in the definitive and presumptive criteria for HIV infection is based on the recommended practices for diagnosing infection in children aged <18 months and on evaluations of the performance of these tests for children in this age group. Children aged <18 months born to an HIV-infected mother are categorized as having had perinatal exposure to HIV infection if the child does not meet the criteria for HIV infection or the criteria for “not infected with HIV” [1, 2]. Children born before 1994 were considered HIV infected if they met the HIV case definition stated in the 1987 pediatric classification system for HIV infection [3].

Because states initiated reporting on different dates, the length of time reporting has been in place influences the number of HIV infection cases reported. For example, data presented for a given annual period may include cases reported during only a part of the year. Before statewide HIV reporting, some states collected reports of HIV infection (not AIDS) in selected populations. Therefore, these states have reports that precede the initiation of statewide confidential reporting. A state with confidential HIV infection reporting also may report persons who tested positive in that state but who were residents of other states. Therefore, when HIV data are presented by state of residence, cases reported before the date a state initiated reporting may have been reported from other states with confidential HIV infection reporting.

Over time, HIV infection may progress to AIDS and be reported to surveillance. Persons with HIV infection (not AIDS) who are later reported as having AIDS are deleted from the HIV infection (not AIDS) tables and added to the AIDS tables. Persons with HIV infection may be tested at any point on the clinical spectrum of disease; therefore, the time between diagnosis of HIV infection and diagnosis of AIDS differs. In addition, because surveillance practices differ, the reporting and updating of persons’ clinical and vital status differs among states. Completeness of reporting for HIV infection (not AIDS) is estimated at more than 85% [4]. By matching data in the national surveillance database, CDC estimates that approximately 2% of cases of HIV infection (not AIDS) are duplicates

Surveillance of AIDS
All 50 states, the District of Columbia, and U.S. dependencies, possessions, and associated nations report AIDS cases to CDC by using a uniform surveillance case definition and case report form. The original definition was modified in 1985 and 1987 [5, 6]. The case definition for adults and adolescents was modified again in 1993 [7; see also 8]. The revisions incorporated a broader range of AIDS-indicator diseases and conditions and used HIV diagnostic tests to improve the sensitivity and specificity of the definition. The laboratory and diagnostic criteria for the 1987 pediatric case definition [3] were updated in 1994 [9]. Effective January 1, 2000, the surveillance case definition for HIV infection was revised to reflect advances in laboratory HIV virologic tests. The definition incorporates the reporting criteria for HIV infection and AIDS into a single case definition for adults and children [1].

For persons with laboratory-confirmed HIV infection, the 1987 revision incorporated encephalopathy, wasting syndrome, and other indicator diseases that are diagnosed presumptively (i.e., without confirmatory laboratory evidence of opportunistic infection). In addition to the 23 clinical conditions in the 1987 definition, the 1993 case definition for adults and adolescents includes HIV infection among persons with CD4+ T-lymphocyte counts of less than 200 cells/µL or a CD4+ percentage of less than 14 and a diagnosis of pulmonary tuberculosis, recurrent pneumonia, or invasive cervical cancer. For adults, adolescents, and children 18 months of age and older, the 2000 revised HIV surveillance case definition incorporates positive test results or reports of a detectable quantity of HIV nucleic acid or plasma HIV RNA.

The pediatric case definition incorporates the revised 1994 pediatric classification system for evidence of HIV infection. Cases among children with their first positive results by Western blot or HIV detection tests before October 1994 were categorized according to the 1987 classification system. For children of any age with an AIDS-defining condition that requires evidence of HIV infection, a single positive HIV virologic test result (i.e., HIV nucleic acid [DNA or RNA], HIV viral culture, HIV p24 antigen) is sufficient for a reportable AIDS diagnosis if the diagnosis is documented by a physician.

Although completeness of reporting of AIDS cases to state and local health departments differs by geographic region and patient population, studies conducted by state and local health departments indicate that the reporting of AIDS cases in most areas of the United States is more than 85% complete [10, 11, 12, 13]. In addition, multiple routes of exposure, opportunistic infections diagnosed after the initial AIDS case report was submitted to CDC, and vital status may not be determined or reported for all cases. However, for persons reported as having AIDS, the reporting of deaths is estimated to be more than 90% complete [14]. CDC estimates that less than 5% of HIV and AIDS cases in the national surveillance database are duplicates.

Since January 1, 1994, CDC has not accepted AIDS case reports that meet only the laboratory-based immunologic criteria of the 1993 expanded surveillance case definition [7] if information on sex or race/ethnicity was missing. A small number of cases previously reported to CDC without those variables have been returned to the health departments for follow-up and have been deleted from the totals. Included in this report are persons known to be infected with HIV type 2 (HIV-2) [see also 15].

Tabulation and Presentation of Data
Data in this report are provisional. This report includes information received by CDC through June 30, 2003. For analyses of cases of HIV infection, we used data from 30 areas (i.e., 29 states, Guam and the U.S. Virgin Islands) that have had HIV infection reporting for a sufficient time (i.e., at least since 1998) to allow for stabilization of data collection and for adjustment of the data in order to monitor trends.

This report is organized in five sections. In sections 1 through 3 (i.e., Tables 1 through 12, Figure 1, and Maps 1 and 2), data have been statistically adjusted to correct for delays in the reporting of cases and deaths; unreported risk or exposure has been statistically redistributed to better present the trends in the epidemic and the distribution of risk characteristics among affected populations. To assess trends in diagnoses, deaths, or prevalence, it is preferable to use adjusted data, presented by year of diagnosis instead of year of report. In section 5 (Tables 14 through 18), HIV and AIDS data are tabulated by date of report to CDC. Data for the U.S. dependencies, possessions, and associated nations are included in the totals. The U.S. dependencies, possessions, and associated independent nations comprise Puerto Rico, the U.S. Virgin Islands, Guam, American Samoa, the Republic of Palau, the Republic of the Marshall Islands, the Commonwealth of the Northern Mariana Islands, and the Federated States of Micronesia. The last 5 areas constitute the category Pacific Islands, U.S., as listed in this report.

Selection of areas with mature HIV reporting systems for analysis of diagnoses of HIV/AIDS and HIV infection (not AIDS)
The inclusion of areas with mature confidential name-based HIV reporting for tabulation and presentation of HIV/AIDS and HIV infection (not AIDS) data was based on the date of the implementation of HIV reporting in the area and the ability to calculate 4 years of reporting delays in order to display trends reliably. For this report, 30 areas with laws or regulations requiring confidential name-based HIV infection reporting since 1998 were eligible for inclusion. The 30 areas are Alabama, Arizona, Arkansas, Colorado, Florida, Idaho, Indiana, Iowa, Louisiana, Michigan, Minnesota, Mississippi, Missouri, Nebraska, New Jersey, New Mexico, Nevada, North Carolina, North Dakota, Ohio, Oklahoma, South Carolina, South Dakota, Tennessee, Utah, Virginia, West Virginia, Wisconsin, Wyoming, and the U.S. Virgin Islands.

Selection of areas for analyses of reports of HIV infection (not AIDS)
Areas included in tabulations for reports of HIV infection (not AIDS) are based on the date of implementation of name-based HIV infection reporting before the end of 2002. For this report, data from 39 areas were used in Tables 15 and 17 to describe reports of cases of HIV infection (not AIDS).

Age groups
Age groups of persons living with HIV/AIDS, HIV infection (not AIDS), or with AIDS are based on the person’s age as of December 31, 2002. All other age groups are based on the person’s age at the first documented positive HIV-antibody test result for persons with a diagnosis of HIV infection (not AIDS), and age at diagnosis of AIDS for persons with a diagnosis of AIDS. The age category for adults and adolescents includes persons =13 years; the age category for children includes children <13 years of age.

Race and ethnicity
In the Federal Register for October 30, 1997 [16], the Office of Management and Budget announced the Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, also known as Statistical Policy Directive 15. These standards, which superseded the 1977 standards, reflected a change in federal policy regarding the collection of race and ethnicity data; implementation by January 1, 2003 was mandated. At a minimum, the following race categories should be collected: American Indian or Alaska Native; Asian; black or African American; Native Hawaiian or Other Pacific Islander; and white. Additionally, systems must be able to retain information when multiple racial categories are reported. Two ethnicity categories should be collected regardless of race: Hispanic and not Hispanic.

Because data for this report were compiled from reports to CDC through June 2003, race and ethnicity information may have been collected under two systems. The race and ethnicity categories in the system used through December 2002 are maintained in this report because most were under that system. Persons who reported multiple racial categories or whose race was unknown are included in the total numbers in Tables 1-5, 7-11, and 18. Also, persons reported as non-Hispanic may include persons whose ethnicity was unreported.

Tabulation of persons living with HIV/AIDS, AIDS, and HIV infection (not AIDS)
Tabulation of persons living with HIV/AIDS, HIV infection (not AIDS), or with AIDS (Tables 8 through 12 and Maps 1 and 2) include persons whose vital status was reported as “alive” as of the last update to the data; persons whose vital status is missing or unknown are not included. Tabulations of deaths of persons with AIDS (Table 7) include persons whose vital status was reported as “dead” as of the last update; persons whose vital status is missing or unknown are not included. Caution should be used in interpreting these data because states differ in how often they review the vital status of persons reported with HIV/AIDS, HIV infection (not AIDS), or with AIDS. In addition, some cases may be lost to follow-up.

Geographic designations
Regions of residence included in the report are defined as follows. Northeast: Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Vermont; Midwest: Illinois, Indiana, Iowa, Kansas, Michigan, Minnesota, Missouri, Nebraska, North Dakota, Ohio, South Dakota, and Wisconsin; South: Alabama, Arkansas, Delaware, District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, and West Virginia; West: Alaska, Arizona, California, Colorado, Hawaii, Idaho, Montana, Nevada, New Mexico, Oregon, Utah, Washington, and Wyoming; Guam, Puerto Rico, the U.S. Pacific Islands, and the U.S. Virgin Islands.

Survival analyses
For the survival analyses presented in Table 13 and Figures 2 through 4, we used survival or failure time analysis methods for AIDS case data reported through June 30, 2003. Table 13 was limited to AIDS cases diagnosed in 1998, and Figures 2 through 4 were limited to cases diagnosed during 1994–2001. Table 13 and the figures were limited to deaths through December 2002; this was done to allow at least 6 months for a death to be reported by June 30, 2003 and at least 1 month after AIDS diagnosis. Statistical significance of differences in survival among demographic groups was assessed in pairwise comparisons by the log rank test at p < 0.005.

Exposure Categories
For surveillance purposes, cases of HIV/AIDS, HIV infection (not AIDS), and AIDS are counted only once in a hierarchy of exposure categories. Persons with more than one reported mode of exposure to HIV are classified in the exposure category listed first in the hierarchy. The exception is men who report sexual contact with other men and injection drug use; this group makes up a separate exposure category.

Persons whose exposure category is classified as male-to-male sexual contact include men who report sexual contact with other men (i.e., homosexual contact) and men who report sexual contact with both men and women (i.e., bisexual contact). Persons whose exposure category is classified as heterosexual contact are persons who report specific heterosexual contact with a person with, or at increased risk for, HIV infection (e.g., an injection drug user).

Adults and adolescents born in, or who had sex with someone born in, a country where heterosexual transmission was believed to be the predominant mode of HIV transmission (formerly classified as Pattern II countries by the World Health Organization) are no longer classified as having heterosexually acquired AIDS unless they meet the criteria stated in the preceding paragraph. Similar to other cases among persons who were reported without behavioral or transfusion risks for HIV infection, these cases are now classified (in the absence of other risk information that would classify them in another exposure category) as “no risk reported or identified” [17]. Cases in children whose mother was born in, or whose mother had sex with someone born in, Pattern II countries are now classified (in the absence of other risk information that would classify them in another exposure category) as “Mother with, or at risk for, HIV infection: has HIV infection, risk not specified.”

Cases in persons with no reported exposure to HIV through any of the routes listed in the hierarchy of exposure categories are classified as “no risk reported or identified.” No identified risk (NIR) cases include cases that are being followed up by local health department officials; cases in persons whose exposure history is incomplete because they died, declined to be interviewed, or were lost to follow-up; and cases in persons who were interviewed or for whom other follow-up information was available and no mode of exposure was identified.

As of September 2000, the procedures for investigating cases reported without risk changed from ascertaining risk for all reported cases to estimating risk distributions from statistical models and population-based samples. States continue to investigate any report of an unusual exposure to HIV and report these cases to CDC. CDC will continue to tabulate the number of documented unusual exposures to HIV reported by the states.

Because recently reported HIV or AIDS cases are more likely to be reported as NIR, recent AIDS incidence in some exposure categories will be underestimated unless an adjustment is made. For tables and figures showing the estimated diagnoses of HIV infection (not AIDS) and AIDS, the adjustment of NIR cases among adults and adolescents is based on the redistributions of exposure category, by specific sex, race, and region, of cases that were diagnosed during 1992–1999 and initially assigned to the NIR category but that were later reclassified. Similar adjustment of NIR cases among children are based on exposure-category redistribution of all cases diagnosed during that period and later reclassified [18, 19].

Trends in AIDS Incidence
Because of the temporary distortion caused by the 1993 expansion of the case definition, trends in AIDS incidence had previously been estimated by statistically adjusting cases reported according to the criteria added to the case definition in 1993. This adjustment estimated when an AIDS-related opportunistic infection (AIDS-OI) would develop in persons reported on the basis of immunologic criteria (CD4+ T-lymphocytes counts of less than 200 cells/µL or percentage of less than 14) and thus approximated trends in AIDS-OI incidence as if the case definition had not changed [20]. However, by the end of 1996, the temporary distortion caused by reporting prevalent as well as incident cases that met the criteria added in 1993 had almost entirely waned. In addition, after the end of 1996, the incidence of AIDS-OIs could no longer be reliably estimated because data are not available to model the increasing effects of therapy on rate of disease progression. Therefore, from 1996 forward, trends in AIDS incidence are adjusted for reporting delay, but not for the 1993 expansion of the case definition. These trends represent the incidence of AIDS (1993 criteria) in the population and increasingly represent persons with newly diagnosed HIV infection at the time of AIDS diagnosis, those with HIV infection who did not seek or receive treatment, and those for whom treatment has failed. Thus, despite the effects of treatment on AIDS incidence, AIDS incidence remains an important measure of the effect of the epidemic and of the need for resources for the severely ill.

Reporting Delays
Reporting delays (time between diagnosis of HIV infection or AIDS and report to CDC) may differ among exposure, geographic, racial/ethnic, age, sex, and vital status categories; for some AIDS cases, delays have been as long as several years. About 52% of AIDS cases were reported to CDC within 3 months of diagnosis and about 88% were reported within 1 year. Approximately 88% of deaths of persons with AIDS are reported within 1 year. For cases of HIV infection (not AIDS) diagnosed since the implementation of uniform reporting through the HIV/AIDS Reporting System on January 1, 1994, about 66% of all cases were reported to CDC within 3 months of diagnosis, and about 93% were reported within 1 year.

Adjustments of the estimated data on HIV infection (not AIDS) and on AIDS to account for reporting delays are calculated by a maximum likelihood statistical procedure, taking into account differences in reporting delays among exposure, geographic, racial/ethnic, age, sex, and vital status categories, and assuming that reporting delays in these groups have not changed over time [21, 22]

Rates
Rates per 100,000 population were calculated for the numbers of diagnoses of AIDS in 2002, as well as for persons living with HIV infection (not AIDS) at the end of 2002. Population denominators used to compute these rates for the 50 states and the District of Columbia were based on official postcensus estimates for 2002 from the U.S. Census Bureau [23] and bridged-race estimates for 2000 obtained from the National Center for Health Statistics [24]. The bridged estimates are based on the Census 2000 counts and produced under a collaborative agreement with the U.S Census Bureau. These estimates result from bridging the 31 race categories used in Census 2000, as specified in the 1997 Office of Management and Budget standards [16] for the classification of data on race and ethnicity, to the four race categories specified in the 1977 standards. Population denominators for U.S. dependencies, possessions, and associated nations were based on official postcensus estimates and Census 2000 counts from the U.S. Census Bureau’s International Database. Each rate is calculated by dividing the number of cases diagnosed during the 12 months in 2002 (or the number of persons living with HIV infection or with AIDS at the end of 2002) by the 2002 population, multiplied by 100,000. The denominators used for computing age-, sex-, and race-specific rates are computed by applying the age, sex, and race proportions from the bridged-race population estimates for 2000 to the 2002 postcensus estimates of the total population for each state. When bridged-race population denominators for the U.S. dependencies, possessions, and associated nations were not available, proportions from the U.S. Census Bureau’s International Database for 2000 were used to estimate the age-, and sex-specific subpopulations [25].

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