“The CDC Supplement to HIV/AIDS Surveillance (SHAS) project uses the infrastructure of HIV infection and AIDS case reporting to collect additional information on risk behaviors among HIV-infected persons, who by definition represent those at highest risk. The SHAS project provides a method for health departments to collect information on HIV risk behaviors that is useful both locally and nationally for guiding HIV prevention and care programs.” (1) This description of SHAS appeared in a 1996 article by Buehler et al that summarized the methods and early findings of this supplemental HIV/AIDS surveillance project and outlined the potential utility of SHAS data for HIV program planning and evaluation. Initiated in 1990, SHAS is an ongoing project that interviews persons age 18 and older who are newly reported with HIV or AIDS to participating state and local health departments. This is the first HIV/AIDS Special Surveillance Report of data from the SHAS project.

Understanding the risk behaviors of the HIV-infected population has been a primary goal of the SHAS project. This goal takes on new importance in light of the increases in the total number of persons living with HIV infection. Longer survival of persons with AIDS and reduction in the progression of HIV to AIDS, both of which are associated with the introduction of highly-active antiretroviral therapy (HAART), have been documented in previous Surveillance Summaries. (2,3) Prevention efforts are now presented with new challenges that involve not only identifying high-risk behavior but also developing behavioral interventions that can effect changes that can be sustained over long periods of time, potentially for decades.

The data in this report are derived from interviews conducted from mid-1997 through 2000 using version 5 of the SHAS questionnaire, the first version to contain a module of questions on the use of HIV antiretroviral medications and access to care. During this period of analysis, SHAS interviews were conducted in 12 states (Figure 1) representing a mixture of high and moderate HIV prevalence sites. Recruitment methods are either population-based or facility-based and vary by site (see Technical Notes). The demographic distribution of persons interviewed parallels the distribution of cases of HIV/AIDS in adults in the areas in which SHAS was conducted (Tables 1a and 1b), with the exception of a lower percentage of white men (29% vs. 36%) among SHAS participants. This reflects an intentional scheme to under-sample men who have sex with men at selected sites (see Technical Notes). The total number of American Indian/Alaska Natives (AI/AN) and Asian/Pacific Islanders (A/PI) in SHAS, relative to the other racial/ethnic groups, are small; however, this reflects the representation of these groups in the local populations from which SHAS participants are recruited.

The demographic characteristics of the SHAS participants are presented in Table 2. Overall, more than 75% of the SHAS participants had a diagnosis of AIDS at the time of interview (5 of the SHAS sites—Los Angeles County, Atlanta, Connecticut, Delaware, and Washington— did not report persons with HIV infection that had not progressed to AIDS in their surveillance systems during mid-1997 through 2000; these persons were thus not eligible for participation in SHAS).

The data in this report provide information on high-risk behaviors of persons with HIV infection at various points in the disease spectrum. Data are available on risk behaviors that may have been associated with acquisition of HIV infection (Figure 3, Tables 7 and 8). The report also contains information on high-risk sexual behavior (Figure 2, Tables 3, 4, 5) and injection drug use behavior (Tables 7 and 8) in the 12 months prior to the SHAS interview. Data are also included on the use of crack cocaine and alcohol (Tables 7 and 8), substances that may impair judgment concerning other risk behaviors associated with HIV infection and transmission.

In addition, this report also contains information that is potentially useful for appropriately focusing and evaluating HIV prevention interventions. Data from SHAS have contributed to the understanding that men classified as having been exposed to HIV through male-to-male sexual contact (either singularly, termed “MSM” [men having sex with men] or in conjunction with injection drug use risk, termed “MSM/IDU”) may consider themselves to be “straight” because they also report having female sex partners. (4) SHAS participants were asked their sexual orientation; this was then compared to the assigned HIV risk exposure categories (Table 6). (The HIV exposure categories reported in this report are based on an algorithm that uses the risk behaviors reported by the participant during the SHAS interview as well as the hierarchy of exposure categories in the national HIV/AIDS surveillance system (HARS) to assign an HIV exposure category [see Technical Notes]).

Demographic differences in HIV testing are displayed in Tables 9 and 10. At the time of first positive HIV test, “illness” was the main reason given by men and women of all races/ethnicities for having been tested. Overall, twice the proportion of men reported having their HIV test due to “being in a known HIV risk group” (15%) compared to women (7%). Among men, lower proportions of non-His-panic blacks and Hispanics compared to non-Hispanic whites sought testing due to recognized risk, (10%, 13% and 23%, respectively). Overall, two thirds of SHAS participants reported they had not been tested for HIV prior to their initial positive test; there were no differences by sex or race/ethnicity. The proportion with no prior HIV test increased as age at interview increased. Persons classified with MSM risk had the lowest proportion with no previous test and male IDU had the highest proportion with no previous test.

Longer survival after infection with HIV is contingent upon knowing one is infected, receiving health care from providers knowledgeable about HIV care management, having access to appropriate medications, and adhering to therapy. SHAS data can be used to assess many of these key points in the spectrum of care and to monitor trends. For example, a majority of persons reported receiving medical care for HIV within 3 months of their initial HIV-positive diagnosis (Tables 11 and 12). Table 13 shows the history of taking antiretroviral medications among persons diagnosed with AIDS; Table 14 displays the same data for persons with HIV infection (not AIDS). Among race/ethnicity groups, non-Hispanic blacks reported the lowest percentage currently taking any antiretroviral medication.

There are limitations to the data presented in this report. All persons age 18 and older reported in HARS from participating areas that use population-based recruitment, and all persons age 18 and older attending participating facilities in areas with facility-based recruitment, are eligible for the SHAS interview. However, HIV infection reporting requirements differ between states (see Technical Notes) and 5 of the 12 sites did not report persons with HIV infection (not AIDS) to the disease surveillance system. Most of the HIV treatment sites that use facility-based recruitment are publicly funded clinics; thus the characteristics of patients from these clinics may reflect the lower socio-economic status of the population receiving care at these sites. Also, facility-based recruitment is biased toward persons who are receiving care for HIV disease. Regardless of the type of recruitment, some persons eligible for SHAS die or are lost to follow-up before they are approached for recruitment. The interview is voluntary, and the characteristics of those persons who died, who could not be located, or who refused to be interviewed may not be the same as the characteristics of those who participate (although Table 1 shows that the race/ethnicity distribution of SHAS participants is similar to that of persons eligible for the study). Finally, the analyses are not weighted to the size of site-specific populations. Because these factors may affect the interpretation of data in this report, extrapolations of the SHAS data to broader populations must be made with caution. Still, the SHAS study does provide valuable information on the demographics and risk behaviors of adults with HIV or AIDS from diverse populations. Such information is intended for use in planning, implementing and evaluating HIV prevention activities, as well as in resource allocation.

Highlighted findings:

• History of substance use was common among SHAS participants. Overall, 31% met the CAGE criteria [see Technical notes] for possible alcohol abuse; 34% reported ever using crack cocaine; and 24% reported ever using injection drugs.
• Among non-Hispanic black males classified as having been exposed to HIV through MSM behavior or combined MSM/IDU behavior, 25% and 35%, respectively, self-identified as heterosexual. The corresponding proportions among similarly classified non-Hispanic white males were 6% and 14%; and among Hispanic males the proportions were 14% and 16%, respectively.
• The overall proportion of SHAS participants who were receiving medical care for HIV infection was large: Among persons who had known they were HIV-positive for at least 12 months, 96% of persons with AIDS and 89% of persons with HIV (not AIDS) had received care for their HIV disease at some time during the previous 12 months.
• At the time of interview, 79% of those with AIDS reported currently taking antiretroviral medication.
• Current health insurance status differed by race/ ethnicity: non-Hispanic whites were at least twice as likely to report having private health insurance coverage (24%) compared to non-Hispanic blacks (12%) and Hispanics (9%).

References

1. Buehler JW, Diaz T, Hersh BS, et al. The supplement to HIV/AIDS surveillance project: an approach for monitoring HIV risk behaviors. Public Health Reports 1996;111(Suppl 1):134-137.
2. Centers for Disease Control and Prevention. Deaths among Persons with AIDS through December 2000. HIV/AIDS Surveillance Supplemental Report, 2002;8(No. 1):1-22.
3. Centers for Disease Control and Prevention. HIV/AIDS Surveillance Supplemental Report, 1999;5(No. 1):1-14.
4. Montgomery JP, Mokotoff ED, Gentry AC, Blair JM.The extent of bisexual behavior in HIV-infected men and implications for transmission to their female sex partners. AIDS Care 2003;15(No. 6):829-837.