Late HIV Testing --- 34 States, 1996--2005

Without effective antiretroviral therapy, most persons infected with human immunodeficiency virus (HIV) will progress to acquired immunodeficiency syndrome (AIDS) in approximately 10 years (1). Testing, diagnosis, and medical care soon after HIV infection and before developing AIDS can prevent unnecessary morbidity and mortality and reduce further HIV transmission. Persons who receive an AIDS diagnosis concurrently or soon after receiving their initial HIV diagnosis (e.g., ≤3 years) represent missed opportunities for prevention and treatment (2). A Healthy People 2010 developmental objective is to increase the proportion of new HIV infections diagnosed before progression to AIDS.* To characterize late HIV testing, CDC examined data from 1996--2005 from 34 states† with confidential name-based HIV and AIDS reporting (the most recent data available) to determine the percentage of persons who received an AIDS diagnosis ≤3 years after receiving their initial HIV diagnosis. The results indicated that, within 1 year of their HIV diagnosis, 38.3% of patients had received an AIDS diagnosis; another 6.7% received an AIDS diagnosis from 1 to 3 years after their HIV diagnosis. Compared with whites, greater percentages of persons of all other racial/ethnic populations received an AIDS diagnosis ≤3 years after their initial HIV diagnosis. These findings underscore the need for comprehensive HIV testing programs that include both routine screening of persons aged 13--64 years and more frequent testing for persons at increased risk and, therefore, in greater need of periodic HIV testing.

HIV infection and AIDS are notifiable health conditions in all 50 states, the District of Columbia, and five U.S. territories. Although all states have had AIDS reporting since the early 1980s, states have implemented HIV infection reporting over time; national HIV surveillance§ with uniform reporting was not implemented fully until 2008. CDC regards data from states with confidential, name-based, HIV surveillance systems sufficient to monitor trends and estimate risk behaviors for HIV infection after 4 years of reporting (3). The HIV and AIDS diagnosis data in this report were obtained from the 34 states with such reporting since December 2003.

A standardized Kaplan-Meier method was used to examine time from initial HIV diagnosis to AIDS diagnosis for persons receiving HIV diagnoses in the 34 states during 1996--2005. Patients were included in the analysis if the diagnoses of HIV and AIDS they received met the 1999 case definitions (4). Patients were followed up through 2006, and cases were reported to CDC by June 2008. Completeness of AIDS reporting is estimated to be >85%, and duplicate reports are estimated to be <5% (3,5). Estimates of the percentage of persons with HIV who had an AIDS diagnosis at 1 year and 3 years after their initial HIV diagnosis were calculated overall and by age group at HIV diagnosis, race/ethnicity, sex, HIV transmission category, and year of HIV diagnosis. Certain patients did not have a full 3 years of follow-up, but all had the minimum 1 year of follow-up. In time-to-event analyses, persons are followed starting at different times, but the results are analyzed at a single point in time. This analysis results in persons with varying lengths of follow-up but enables use of all available data. In this report, persons identified as Hispanic or Latino might be of any race. Persons identified as American Indian or Alaska Native, Asian, black or African American, Native Hawaiian or other Pacific Islander, white, or of multiple or unknown race all were non-Hispanic. Persons aged ≥13 years were classified according to CDC's standard HIV transmission categories.¶

Of the 281,421 persons receiving diagnoses of HIV infection during 1996--2005, 45.0% had an AIDS diagnosis by 3 years after their initial HIV diagnosis (Table). At 3 years after HIV diagnosis, the percentage of persons with an AIDS diagnosis was greater among those who were older (63.2% for those aged ≥60 years and 57.5% for those aged 50--59 years) when they received their initial HIV diagnosis than among those who were younger (31.6% for those aged 20--29 years and 22.7% for those aged 13--19 years). Whites were least likely to have an AIDS diagnosis 3 years after their initial HIV diagnosis (42.6%), followed by persons identified as of multiple or unknown race (42.9%), persons identified as black or African American (46.1%), American Indian or Alaska Native (47.2%), Hispanic or Latino (48.4%), and Asian (50.4%). Percentages of those with AIDS 3 years after their HIV diagnosis could not be calculated for Native Hawaiians or other Pacific Islanders because of small case numbers (Table).

At 3 years after their initial HIV diagnosis, 46.9% of men had an AIDS diagnosis compared with 41.5% of women. A similar pattern was observed by HIV transmission category. A greater percentage of male injection-drug users (IDUs) (49.9%) had an AIDS diagnosis at 3 years than female IDUs (41.9%) and a greater percentage of men with high-risk heterosexual contact (50.2%) than women with high-risk heterosexual contact (40.9%). Among those who had male-to-male sexual contact, 47.8% had an AIDS diagnosis after 3 years and among those who had both male-to-male sexual contact and injection-drug use, 47.2% had an AIDS diagnosis.

Persons who received an HIV diagnosis in 2003 were less likely (44.5%) to have an AIDS diagnosis 3 years later than persons diagnosed with HIV in 1996 (49.1%). In addition, persons who received an HIV diagnosis in 2005 were less likely (36.4%) to have an AIDS diagnosis 1 year later than persons diagnosed with HIV in 1996 (43.2%).

Reported by: RL Shouse, MD, T Kajese, MSPH, HI Hall, PhD, LA Valleroy, PhD, Div of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, CDC.

Editorial Note:

Current estimates suggest that 21% of HIV infections in the United States are undiagnosed (6). To identify all HIV infections and to initiate early intervention effectively, CDC recommends routine screening for persons aged 13--64 years and pregnant women and retesting at least annually for all persons likely to be at high risk** for HIV (7). The prognosis for a patient diagnosed with AIDS has improved substantially since introduction of highly active antiretroviral medications (8); however, persons who receive a diagnosis late in their course of HIV infection often are more severely immunosuppressed and more likely to experience increased morbidity and short-term mortality than persons with earlier diagnoses in addition to being more likely to transmit HIV when unaware of their infection (7,9).

These findings suggest that from 1996 to 2005 a substantial percentage of persons were diagnosed late in their HIV infection; 38.3% of persons with HIV diagnoses had an AIDS diagnosis within 1 year, and 45.0% had an AIDS diagnosis within 3 years. Because the probability of progression to AIDS following HIV infection in the absence of therapy is approximately 2% in the first 2 years and increases to approximately 50% at 10 years, a diagnosis of AIDS within 1 year of the initial HIV diagnosis suggests late testing for HIV infection and not more rapid advancement to AIDS (1). A diagnosis of AIDS within 3 years from initial HIV diagnosis suggests late testing but also might reflect limited access to medical care, suboptimal treatment, failure to adhere to treatment, or treatment failure. To optimize clinical management and selection and timing of therapy, the U.S. Department of Health and Human Services issued guidelines for use of antiretroviral agents in April 1998, with the most recent update in November 2008.††

Understanding how factors such as late testing contribute to the high rates of HIV infection among minorities is important to reduce HIV transmission and morbidity and mortality in these populations. This analysis showed that, compared with whites, greater percentages of persons in other racial/ethnic populations had an AIDS diagnosis within 3 years of their initial HIV diagnosis. This finding follows recent reports that HIV incidence and prevalence are higher among minorities (especially blacks or African Americans and Hispanics or Latinos) and provides another facet of the disproportionate effects of HIV infection on these populations (3,6). Additional findings in this report showed that men (overall and within transmission categories including both sexes) were more likely than women and older persons were more likely than younger persons to receive a diagnosis of AIDS at 3 years after their HIV diagnosis. Women might receive testing for HIV infection more regularly than men because of more frequent health-care visits and being offered HIV testing as part of routine reproductive health care (e.g., family planning visits).

The findings in this report are subject to at least three limitations. First, the data used to examine time to AIDS diagnosis after initial HIV diagnosis only include data from the 34 states with confidential, name-based HIV surveillance since December 2003. The data from these 34 states account for approximately 66% of the nation's AIDS diagnoses but might not be nationally representative. Data from additional states are expected to be added in the future, including states (e.g., California) with high HIV prevalence and heavy concentrations of certain populations (e.g., Hispanics). Second, misclassification of the HIV diagnosis date might have occurred in certain cases. For example, some persons might have had positive results from anonymous, unreported HIV tests before they had a confidential HIV test which was reported to a health department, making the time from initial HIV diagnosis to AIDS diagnosis appear shorter than was actually the case. Finally, the reasons for late HIV testing cannot be discerned from the results of this study; therefore, in addition to promoting early testing, comprehensive strategies to improve medical care access, enhance compliance, and ensure appropriate timing and selection of effective therapy also should be considered.

To reduce late testing for HIV infection, health-care providers should fully implement both routine and risk-based HIV testing, and local public health officials should continue educational efforts regarding the importance of early HIV testing. In 2003, CDC launched an initiative, Advancing HIV Prevention: New Strategies for a Changing Epidemic. Priority strategies included making HIV testing part of routine medical care and implementing new models to diagnose HIV infection outside of clinical settings. From this initiative, CDC sponsored multiple projects that demonstrated the feasibility and yield of HIV screening programs in health-care, corrections, and community settings (10). Achieving earlier diagnosis and reducing HIV transmission will require providers, health departments, and community organizations to promote screening in health-care settings and periodically retest persons with ongoing risk behaviors. Additionally, expansion of efforts within the social networks of persons who receive an HIV diagnosis can result in testing of others who are likely infected.

References

1. Brookmeyer R. Reconstruction and future trends of the AIDS epidemic in the United States. Science 1991;253:37--42.
2. Hall HI, McDavid K, Ling Q, Sloggett A. Determinants of progression to AIDS or death after HIV diagnosis, United States, 1996 to 2001. Ann Epidemiol 2006;16:824--33.
3. CDC. HIV/AIDS surveillance report, 2007. Vol. 19. Atlanta, GA: US Department of Health and Human Services, CDC; 2009. Available at http://www.cdc.gov/hiv/topics/surveillance/resources/reports.
4. CDC. 1999 guidelines for national human immunodeficiency virus case surveillance, including monitoring for human immunodeficiency virus infection and acquired immunodeficiency syndrome. MMWR 1999;48(No. RR-13).
5. Glynn MK, Ling Q, Phelps R, Li J, Lee L. Accurate monitoring of the HIV epidemic in the United States: case duplication in the national HIV/AIDS surveillance system. J Acquir Immune Defic Syndr 2008;47:391--6.
6. CDC. HIV prevalence estimates---United States, 2006. MMWR 2008;57:1073--6.
7. CDC. Revised recommendations for HIV testing of adults, adolescents, and pregnant women in health-care settings. MMWR 2006;55(No. RR-14).
8. Palella FJ, Delaney KM, Moorman AC, et al; HIV Outpatient Study Investigators. Declining morbidity and mortality among patients with advanced human immunodeficiency virus infection. N Engl J Med 1998;338:853--60.
9. Sabin CA, Smith CJ, Gumley H, et al. Late presenters in the era of highly active antiretroviral therapy: uptake of and responses to antiretroviral therapy. AIDS 2004;18:2145--51.
10. Heffelfinger JD, Sullivan PS, Branson B, et al. Advancing HIV prevention demonstration projects: new strategies for a changing epidemic. Public Health Rep 2008;123(Suppl 3):5--15.

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Date last reviewed: 6/25/2009