The Ryan White CARE Act was enacted by Congress in 1990 and reauthorized with amendments in 1996 and 2000. The primary purpose of the act is to “provide emergency assistance to localities that are disproportionately affected by the Human Immunodeficiency Virus epidemic”. The amended act requires formula grants based on the “estimated number of living cases of acquired immune deficiency syndrome in the eligible area involved”. Estimates were derived by using methods specified in the act. The amount of funds received by each eligible metropolitan area (EMA), (under Title I), or state, (under Title II) is determined by the locality’s proportion of the total estimated number of living persons with AIDS. The Ryan White CARE act formula is used by the Health Resources and Services Administration (HRSA) for the legislative requirements of the CARE act. Additional information is available at www.hrsa.gov.

This report presents the AIDS case counts (based on AIDS surveillance data reported to CDC through June 30, 2001) that were provided to HRSA in July 2001 (Table 1, AIDS case counts by state; Table 2, AIDS case counts by EMA; Table 3, AIDS case counts for cross-state EMAs). HRSA applies the weights provided by CDC to these counts to determine the proportional distribution of persons living with AIDS.

Tables 4 and 5 are comparisons of three methods for estimating the number of persons living with AIDS by state and EMA. Columns 1 and 2 are the estimated number and percentage distribution according to the Ryan White CARE Act formula. Columns 3 and 4 are the numbers of persons with AIDS reported to CDC and assumed to be alive (cases minus deaths). 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.)

CDC routinely adjusts data for the presentation of trends in the epidemic. Data to estimate the number of people diagnosed with AIDS, living with AIDS (i.e., AIDS prevalence), and the number of deaths among persons with AIDS are statistically adjusted to correct for temporal delays in the reporting of cases and deaths. To assess trends in incidence, deaths, or prevalence, it is preferable to use adjusted data, presented by year of diagnosis instead of year of report, to eliminate artifacts of reporting to the surveillance system. The CDC method nearly always produces the highest counts because a statistical model is being used to “add in” the AIDS cases not yet reported but already diagnosed.

Since the use of antiretroviral therapies became widely available in 1996, trends in new AIDS diagnoses have become less reflective of patterns in HIV transmission and more representative of a delay in diagnosing persons with HIV, and ensuring their linkage to effective treatment and care. Surveillance of HIV infection would provide data more reflective of current trends in HIV incidence and prevalence; however, HIV infection surveillance is not conducted in all states. An Institute of Medicine (IOM) committee is assessing the adequacy and reliability of HIV surveillance data for use as the basis for distributing Ryan White CARE act funds. More information about the IOM project is available at www.iom.edu.