Treating the Numbers: HIV/AIDS Surveillance, Subjectivity, and Risk

Abstract

Using ethnographic data, I focus on how people living with HIV/AIDS in Miami, Florida come to know and govern themselves through quantification and categories of risk, race, and ethnicity. I explore the various levels of surveillance that structure HIV/AIDS prevention programs and highlight how “numerical subjectivities” circulate, how identity and subjectivity become entangled in numerical considerations, and how particular groups of people come to be identified with certain diseases such as HIV/AIDS. By examining the deployment and interpretation of AIDS statistical data among Haitians in Miami, I illustrate how identities, through categories such as “heterosexual” and “high risk groups,” circulate, gain traction, and become meaningful for public health institutions and the people they seek to manage.

Key words:

• governance
• HIV/AIDS
• identity
• risk
• statistics
• United States

Notes

Following Paula Treichler (1999), I utilize HIV/AIDS to refer to both (1) an epidemic representing a wider social and cultural crisis and (2) the broad clinical range of HIV-related conditions from asymptomatic infection to diseases used to define AIDS.

Although commonly referred to as Haitian Creole in English, Kreyòl or Kreyòl Ayisyen is how it is pronounced and spelled in Haiti; this version is increasingly being used among speakers and teachers of the language in the United States. I use Kreyòl instead of Creole because it indicates the official language of Haiti and a language in its own right rather than pidginized French.

I conducted research in July 2004, and from July 2005 until August 2006. My data collection comes from (1) observations of social and health service agencies, (2) 53 in-depth interviews with providers and patients, and (3) epidemiological and surveillance data.

PEMS data allow the CDC to monitor the adoption of evidence-based interventions and to identify details of the agencies implementing these interventions, characteristics of the populations targeted, and the locations and settings in which targeted populations are served.

Multiple imputation, a statistical approach in which each missing risk factor is replaced with a set of plausible values that represent the uncertainty about the true, but missing, value, is used to assign a risk factor for HIV/AIDS cases, which are reported as NIR. For further information, see Green (1998).

Haitians born in Haiti are classified as Haitian, and those born in the United States are categorized as Black/African American.

Multiple imputation, a statistical approach in which each missing risk factor is replaced with a set of plausible values that represent the uncertainty about the true, but missing, value, is used toassign a risk factor for HIV/AIDS cases, which are reported as NIR. For further information, see Green (1998). I did not have access to the data before redistribution was done.

Haitians who attend often participate in classes offered in English and sometimes in Spanish, rather than those offered specifically in Haitian Kreyòl. The small number of HIV/AIDS prevention classes in Kreyòl and low rates of engagement by Haitians in clinical prevention programs could mirror the number of Haitians living with HIV/AIDS. For instance, in February 2011, the latest monthly HIV/AIDS surveillance report available for Miami-Dade County, the total number of cases of adults living with HIV/AIDS comprised of 11,868 Blacks/African Americans (including Haitians and Caribbean Islanders), 9966 Hispanics, and 5257 Whites, while adults born in Haiti represented 2625 cases (Miami-Dade County Health Department 2011). Although HIV/AIDS cases in Miami-Dade county for adults born in Haiti are lower than those for Hispanics, African Americans, and Whites, Haitians comprise 9% of HIV incident cases and 16% of AIDS prevalent cases, while only comprising about 5% of the County population. This number could be higher given that only those born in Haiti (as opposed to Haitians born in the United States or elsewhere) are captured in these Haitian-specific estimates. In addition, the Miami-Dade Partnership, the entity responsible for planning the delivery of HIV/AIDS care, treatment, and services in Miami-Dade County, has designated Haitians as a high-risk group requiring special focus in terms of service delivery due to high rates of poverty, lack of insurance, and cultural barriers to engaging health care services (Miami-Dade Partnership 2009).