Monitoring HIV Care in the United States: Indicators and Data Systems

The number of people living with HIV/AIDS (PLWHA) in the United States is growing each year largely due both to advances in treatment that allow HIV-infected individuals to live longer and healthier lives and due to a steady number of new HIV infections each year. The U.S. Centers for Disease Control and Prevention (CDC) estimates that there were 1.2 million people living with HIV infection in the United States at the end of 2008, the most recent year for which national prevalence data are available. Each year, approximately 16,000 individuals die from AIDS despite overall improvements in survival, and 50,000 individuals become newly infected with HIV. In 2011, the CDC estimated that about three in four people living with diagnosed HIV infection are linked to care within 3 to 4 months of diagnosis and that only half are retained in ongoing care.

In the context of the continuing challenges posed by HIV, the White House Office of National AIDS Policy (ONAP) released a National HIV/AIDS Strategy (NHAS) for the United States in July 2010. The primary goals of the NHAS are to: reduce HIV incidence; increase access to care and optimize health outcomes; and reduce HIV-related health disparities.

Monitoring HIV Care in the United States addresses existing gaps in the collection, analysis, and integration of data on the care and treatment experiences of PLWHA. This report identifies critical data and indicators related to continuous HIV care and access to supportive services, assesses the impact of the NHAS and the ACA on improvements in HIV care, and identifies public and private data systems that capture the data needed to estimate these indicators. In addition, this report addresses a series of specific questions related to the collection, analysis, and dissemination of such data.

Monitoring HIV Care in the United States is the first of two reports to be prepared by this study. In a forthcoming report, also requested by ONAP, the committee will address the broad question of how to obtain national estimates that characterize the health care of people living with HIV in the United States. The second report will include discussion of challenges and best practices from previous large scale and nationally representative studies of PLWHA as well as other populations.

• Front Matter
• Summary
• 1 Introduction
• 2 Indicators Related to Continuous HIV Care and Access to Supportive Services
• 3 Sources of Data on HIV Care to Assess Indicators of HIV Care and Access to Supportive Services
• 4 Barriers to the Collection of HIV Care Data
• 5 The Role of Health Information Technology and Data System Integration in the Collection of HIV Care Data
• 6 Efficient Analysis of HIV Care Indicators and Dissemination of Data by Federal Agencies
• Appendix: Biographical Sketches of Committee Members