April 2008, all 50 states and the District of Columbia, as well as American Samoa, Guam, Puerto Rico, the U.S. Virgin Islands, the Northern Mariana Islands, and the Republic of Palau—one of three freely associated states that report HIV surveillance data to CDC11—had implemented confidential, name-based HIV reporting (CDC, 2011c). Although the data for all reporting areas are included in CDC’s annual HIV Surveillance Report, 2012 marks the first year that all states have sufficiently mature reporting systems to permit CDC to statistically adjust the data for reporting delays and missing information (CDC, 2012e).12
In terms of data elements of interest for tracking the impact of the ACA, the NHSS includes date of HIV/AIDS diagnosis, information on CD4+ T-cell count and plasma HIV RNA (viral load) closest to diagnosis, and optional fields for HIV and substance abuse treatment referral, pregnancy status, and ART status at the time of reporting. Demographic data captured in the NHSS can be used to monitor health disparities among people with HIV with regard to race, ethnicity, sex, gender, age, geographic area, and country of birth.13 Most jurisdictions also report all CD4 count and viral load results,14 which permits the tracking of individuals’ health status over time.
AIDS Cost and Services Utilization Survey
Although not designed to be nationally representative of people with HIV, ACSUS (1991-1992) was the first large-scale and broadly representative effort, beyond surveillance, to collect data on HIV-infected individuals. Sponsored by the Agency for Health Care Policy and Research, now the Agency for Healthcare Research and Quality (AHRQ), ACSUS focused on people receiving HIV care and provided longitudinal data on health care services use, expenditures, and sources of payment for care of adults and children at various stages of HIV infection, and the ways in which those
11The Federated States of Micronesia and the Republic of the Marshall Islands are the other two freely associated states.
12The HIV Surveillance Report for 2012, to be issued in 2014, will be the first to include aggregate data from all 50 states (CDC, 2010).
13The full set of data elements captured in the NHSS can be obtained from the Adult and Pediatric Confidential HIV Case Report forms (available at http://www.odh.ohio.gov/pdf/IDCM/frm5042a.pdf; http://www.odh.ohio.gov/pdf/IDCM/frm5042b.pdf [accessed June 13, 2012]).
14As of June 15, 2010, 33 of 59 reporting areas (50 states, District of Columbia, 5 U.S. dependent areas, and 3 freely associated states) were reporting all CD4 and viral load test result, including 30 states, District of Columbia, Guam, and Puerto Rico (Personal communication, Amy Lansky, Centers for Disease Control and Prevention, October 6, 2011). More states are moving toward reporting all CD4 and viral load test results. Massachusetts, for example, mandated that all CD4 and all HIV viral load results be electronically reported by clinical and commercial laboratories as of January 2012 (Massachusetts Department of Public Health, 2012).