The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act was enacted by Congress in 1990 and reauthorized with amendments in 1996 and 2000. The CARE Act of 2000 expired in September 2005, and reauthorization is under discussion by Congress. The CARE Act of 2000 specified the use of AIDS case counts for the distribution of funds under the CARE Act. However, concerns have been raised that such allocations are not equitable because the epidemic is not adequately reflected by data on AIDS cases alone and that areas with emerging HIV epidemics are underfunded because not all cases of HIV disease are included in calculating the funding formula. A related concern about basing allocations on AIDS cases alone is that jurisdictions are not compensated for providing early access to care and treatment. Therefore, interest is growing in using HIV as well as AIDS data to guide these funding decisions.

The current legislation, enacted in 2000, states that cases of HIV disease rather than cases of AIDS will be used in formula calculations for fiscal year 2007. If the act is reauthorized, Congress may consider changes to the current formula or may add language specifying how and when HIV data may be incorporated into the funding formula. Surveillance data on HIV infection provide a more complete picture of the epidemic and the need for prevention and care services than that provided by AIDS data alone. Most states and territories have adopted confidential name-based reporting of HIV infection, using the same method of reporting for both HIV and AIDS; however, some use code-based or name-to-code methods for reporting HIV cases. To achieve the goal of acquiring nationwide, high-quality HIV data, CDC recommends that all states and territories adopt confidential name-based public health disease surveillance systems to report HIV infections. As of June 2006, 44 states, Puerto Rico, the U.S. Virgin Islands, and the Pacific Islands of American Samoa, Guam, and the Northern Mariana Islands conduct name-based HIV infection surveillance.

The data in this report have not been used for purposes of funding allocations. These data are presented for illustrative purposes only and may be useful for comparing the potential effect of various methods of calculating the numbers of cases on the basis of AIDS and HIV/AIDS data in all jurisdictions. This report provides data on persons living with HIV infection or AIDS at the end of 2004, by geographic area and Ryan White CARE Act eligible metropolitan area (EMA). The AIDS data tables present comparisons of 3 methods for calculating the number of persons living with AIDS. In Tables 1 and 2, columns 1 and 2 provide the estimated number and percentage distribution of AIDS cases in living persons according to the Ryan White CARE Act formula specified in the 2000 reauthorized legislation. It is important to note that the data presented for the Ryan White CARE Act formula calculations in Tables 1 and 2 were not used for the distribution of funds under the CARE Act and were calculated by using data reported during 10 consecutive 12-month periods from January through December 2004 (rather than 10 consecutive 12-month periods from July through June, as typical for CARE Act allocation purposes). Columns 3 and 4 are the numbers of persons with AIDS reported to CDC and assumed to be living (as of the most recent update, vital status reported as “alive”). Columns 5 and 6 are data adjusted for delays in the reporting of cases and deaths to produce point estimates of the number of people living with AIDS. (See the Technical Notes for computational details of each method.)

The HIV/AIDS data (Tables 3 and 4) present comparisons of 2 methods for calculating the number of persons living with HIV/AIDS. HIV/AIDS data include persons with a diagnosis of HIV infection, regardless of their AIDS status at diagnosis. For Tables 3 and 4, columns 1 and 2 are the number and the percentage distribution of persons with HIV/AIDS who were reported to CDC, who were assumed to be living (as of the most recent update, vital status reported as “alive”), and who resided in the 38 areas (36 states, Puerto Rico, and the U.S. Virgin Islands) with confidential name-based HIV infection reporting as of December 2004. Columns 3 and 4 are data adjusted for delays in the reporting of cases and deaths to produce point estimates of the number of people living with HIV/AIDS who resided in the 34 areas (33 states and the U.S. Virgin Islands) with mature HIV reporting systems (i.e., name-based HIV infection reporting since at least December 2000) to allow for stabilization of data collection and for adjustment of the data for reporting delays.

The data in this report demonstrate that the number of persons living with HIV/AIDS or AIDS varies by the method used to calculate the number of cases in living persons. In general, numbers that have been adjusted for delays in reporting of cases and deaths (method 3) are somewhat higher than numbers based on reported case information without adjustments (method 2) or numbers based on 120 months of reported cases with a standard set of national survival weights (method 1). Each method has limitations that should be considered. The numbers of AIDS cases in living persons calculated according to the Ryan White CARE Act formula do not include cases reported before the 120-month period and therefore may be undercounts of the number of persons living with HIV in a jurisdiction. National survival weights adjust for potential differences in the reporting of death information across jurisdictions but do not reflect area-specific differences in length of survival.

The number of persons reported as living with HIV/AIDS or AIDS (method 2) is based on data and the vital status reported as of the most recent update of cases reported from state and local health departments to CDC. Because there are no adjustments for reporting delays, method 2 may overcount the number of cases in living persons because of delays in the reporting of vital status information to health departments and may undercount the cases diagnosed during this period that have not yet been reported to health departments.

In method 3, the numbers of cases in living persons are adjusted for delays in reporting and deaths by using a maximum likelihood statistical procedure (see Technical Notes). The point estimates from this method are derived from data reported 6 months after the calculated point prevalence (cases in living persons as of December 2004; based on case data reported through June 2005). To calculate reliable estimates requires the use of additional months of reported data. Additionally, for HIV/AIDS cases, these adjustments should be done only for areas that have had HIV infection reporting for a sufficient length of time (i.e., at least 4 or 5 years) to allow for stabilization of data collection and reliable adjustment for delays in the reporting of cases and deaths. Therefore, data for areas that implemented confidential name-based HIV infection reporting after 2000 could not be presented by using this method.

Compared with AIDS data alone, HIV/AIDS data provide a more complete picture of the persons in need of HIV care services and the total burden of HIV. As more states implement confidential name-based HIV case reporting, national data will become more representative of persons reported as living with HIV/AIDS in the United States.