Skip to main content
Public Health Reports logoLink to Public Health Reports
. 2014 Jul-Aug;129(4):335–341. doi: 10.1177/003335491412900408

The Status of the National HIV Surveillance System, United States, 2013

Stacy M Cohen a,, Kristen Mahle Gray a, M Cheryl Bañez Ocfemia a, Anna Satcher Johnson a, H Irene Hall a
PMCID: PMC4037459  PMID: 24982536

Abstract

The burden of HIV disease in the United States is monitored by using a comprehensive surveillance system. Data from this system are used at the federal, state, and local levels to plan, implement, and evaluate public health policies and programs. Implementation of HIV reporting has differed by area, and for the first time in early 2013, estimated data on diagnosed HIV infection were available from all 50 states, the District of Columbia, and six U.S. dependent areas. The newly available data for the entire U.S. as well as several other key changes to the surveillance system support the need to provide an updated summary of the status of the National HIV Surveillance System.


Surveillance data for human immunodeficiency virus (HIV) infection have been used for many years at the federal, state, and local levels to monitor the spread of HIV, plan prevention programs and health-care services, and allocate funding for prevention and care.16 The continued and increasing need for high-quality, usable surveillance data was underscored by the release of the 2010 National HIV/AIDS Strategy (NHAS), which calls for a coordinated national response to HIV in the United States.7 To maximize the ability to monitor trends in HIV in the U.S. and progress toward meeting prevention goals, the Centers for Disease Control and Prevention (CDC) has developed a comprehensive National HIV Surveillance System (NHSS) that guides data collection and reporting.

In 2007, Glynn et al. reported on the status of HIV case surveillance in the U.S. as of 2006.1 At that time, national data on HIV infection were available only for cases diagnosed through 2004 in 33 states with long-term confidential name-based HIV reporting. Implementation of reporting differed by area; however, by April 2008, all 50 states, the District of Columbia (DC), and six U.S. dependent areas (American Samoa, Guam, Northern Mariana Islands, Puerto Rico, Republic of Palau, and the U.S. Virgin Islands) had implemented confidential name-based HIV infection reporting.810 The 2011 HIV Surveillance Report included, for the first time, estimated data on diagnosed HIV infections for all areas.2 Changes have occurred in HIV surveillance that support the need to describe the current status of the NHSS.

METHODS

HIV case surveillance

Conducting HIV case surveillance.

HIV infection is one of many nationally notifiable diseases defined by the Council of State and Territorial Epidemiologists in collaboration with CDC. State, local, and territorial governments hold the legal authority for public health surveillance. Although reporting of HIV cases to CDC is voluntary, it is essential to the nationwide aggregation and monitoring of the burden of disease.

Surveillance jurisdictions are responsible for identifying and gathering data on people diagnosed with HIV infection in accordance with state and territorial laws and for reporting the data to CDC without personal identifying information. New cases of HIV infection are typically identified passively through laboratory reports of HIV antibody, antigen, or viral detection tests. Case information is collected on standardized case report forms, which are completed by providers or through active follow-up with reporting entities (e.g., clinics and hospitals) by health department staff.

To ensure uniform reporting practices and provide standardized guidelines for HIV surveillance, CDC developed and maintains the Technical Guidance for HIV Surveillance Programs (Unpublished document, CDC, 2013). For all cases, health departments use document-based surveillance methods, which include collection, storage, and management of all case reports, laboratory test results, and other documents in their original formats, and allow programs to monitor cases longitudinally. Jurisdictions collect demographic, clinical, vital status, and risk data for use at the local level and submission to CDC. Laboratory test results used to diagnose and monitor HIV infection (e.g., CD4 T-lymphocyte [CD4] and viral load [VL] results) are also reported.

Uniform reporting also requires a standardized method for storing and managing reports of individual cases of HIV. The Enhanced HIV/AIDS Reporting System (eHARS) is a browser-based, CDC-developed application that assists health departments with reporting, data management, analysis, and transfer of data to CDC. Each surveillance program maintains a separate eHARS installation and submits de-identified data monthly to CDC through a secure data network.11

HIV surveillance case definition.

As the capacity and need to monitor the burden of HIV disease has evolved, so too has the HIV surveillance case definition. Early case definitions defined HIV and acquired immunodeficiency syndrome (AIDS) as separate entities. The 2008 revised case definition for HIV infection among adults and adolescents incorporated a staging system that categorizes AIDS as HIV infection, stage 3, and underscores that AIDS is late-stage HIV infection, rather than a separate disease.12 The case definition will continue to be updated, as needed, to ensure the most accurate monitoring of HIV disease (e.g., to incorporate new diagnostic testing algorithms or monitor acute HIV infection [stage 0]).13

Monitoring the spectrum of disease.

HIV may be detected at various points along the spectrum of disease, and reportable events range from reporting HIV exposure among infants, to HIV infection in asymptomatic people, to late-stage disease (HIV infection, stage 3 [AIDS]), to death (Figure 1). In addition to monitoring these key events, the increased demand to use HIV surveillance data for public health action (e.g., linkage to and engagement in HIV medical care) has resulted in most states expanding data collection to include all values of CD4 and VL test results.36

Figure 1.

The spectrum of reportable events in HIV surveillance, definitions, and key uses of data to monitor HIV infection longitudinally in the U.S.

Figure 1

aThe exposure of an infant to HIV infection through his/her HIV-infected mother. Only applicable for mother-to-child transmission.

bThe time when a person is first infected with HIV. HIV transmission occurs through sexual contact with infected partners, sharing of contaminated needles between injection drug users, and exposure to contaminated blood or blood products. Because incident infections cannot be directly measured, diagnosed cases are categorized as recent or longstanding infections using an immunoassay for recency.

cHIV is detected through testing; some diagnosed cases are new (incident) infections, while others are longstanding infections. Some people may be tested for HIV during the acute stage of infection; that is, during the time immediately after being infected and before antibodies have developed. Acute HIV infection can result in an indeterminate or negative result when using conventional HIV antibody tests, such as enzyme immunoassays or Western blots. In this scenario, nucleic acid testing, which detects the presence of the virus itself, may be necessary to determine acute infection.

dAfter HIV diagnosis, laboratory testing for initial CD4 count (or percent) and VL serve as markers of the degree of immunosuppression. These laboratory reports are also indicative of entry into HIV medical care. Drug resistance testing is a part of the standard of care for people infected with HIV and is recommended at entry into care, prior to initiation of antiretroviral therapy, upon treatment failure, and when clinically indicated.

eHIV surveillance data are used to monitor linkage to and retention in HIV care and viral suppression among people with HIV. Therefore, most states have expanded their data collection to include the continuous collection of all values of CD4 and VL test results.

fUsing information included in surveillance case reports and laboratory results, cases of HIV infection can be monitored longitudinally on a population basis for progression to stage 3 (AIDS) determined by a CD4 count <200 cells/μL or <14%, or the occurrence of an AIDS-defining condition.

gDeath information is routinely collected as a part of HIV surveillance from state Vital Statistics registries, the National Death Index, and the Social Security Death Master File.

HIV = human immunodeficiency virus

CD4 = CD4 T-lymphocyte

VL = viral load

μL = microliter

AIDS = acquired immunodeficiency syndrome

Laboratory reporting.

CDC provides technical support to HIV surveillance jurisdictions to enhance laboratory reporting. Areas of focus include revising state/local regulations to require reporting of all HIV-related laboratory test results, entering all laboratory records into eHARS, and other laboratory reporting capacity-building activities (e.g., implementing quality-control standards). Electronic laboratory reporting (ELR) has been shown to help standardize and improve the completeness, timeliness, and accuracy of data reported to surveillance. To this end, CDC also supports jurisdictions' efforts to implement and maintain ELR.

All jurisdictions require reporting of HIV-related laboratory results. However, not all jurisdictions have regulations that require reporting of all values of CD4 (counts and percentages) and VL (detectable and -non-detectable) test results (e.g., only CD4 counts <200 cells/microliter [μL] or only detectable VL test results are reportable). Because CD4 and VL test results are key components for monitoring and managing HIV disease,14 measuring outcomes, and using data for public health action, surveillance programs continue to work toward changing regulations to require laboratory reporting of all values. As of January 2013, 39 (68%) of 57 jurisdictions (50 states, DC, Puerto Rico, the U.S. Virgin Islands, and four Pacific Islands) required all CD4 and VL results to be reported to surveillance.

System evaluation and data quality.

Surveillance programs routinely evaluate their systems to monitor data quality and identify possible sources of underreporting and delays in reporting. Twice annually, they also review cases identified as potential duplicates to ensure a negligible proportion of duplicates in the system. At the national level, CDC conducts a duplicate review across states to ensure that each case is counted only once in the NHSS.

CDC developed program standards (i.e., process and outcome measures) for evaluating completeness, timeliness, risk factor ascertainment, death ascertainment, and de-duplication.15,16 To ensure consistency in evaluating these program standards, CDC develops and disseminates evaluation tools to surveillance programs. Additional evaluation activities conducted by programs include reviewing surveillance methods and redirecting resources to case-finding methods that are the most effective and productive.

Data analysis and dissemination.

HIV surveillance programs are responsible for analyzing and disseminating data in the form of an annual surveillance report and an epidemiologic profile.17 The annual surveillance report describes the epidemiology of HIV (e.g., case counts, rates, and trends) in a local area in terms of demographic and risk characteristics. The epidemiologic profile describes the burden of HIV disease in an area in terms of sociodemographic, geographic, behavioral, and clinical characteristics. These reports complement one another and are used at the state and local levels to allocate HIV prevention and care resources, plan and evaluate programs and policies, and monitor the goals of NHAS.

At the national level, HIV surveillance data are analyzed and disseminated through national surveillance reports and slide series; the National Center for HIV/AIDS, Viral Hepatitis, Sexually Transmitted Disease (STD), and Tuberculosis (TB) Prevention (NCHHSTP) Atlas; and other sources for a wide range of uses. For example, data are disseminated to the Health Resources and Services Administration to allocate funding for the Ryan White CARE Act and to the U.S. Department of Housing and Urban Development for the Housing Opportunities for Persons with AIDS Program. National surveillance data are also used to monitor the goals of NHAS, plan HIV prevention programs, and allocate funding for HIV prevention and care.2,3,18

HIV incidence surveillance

HIV diagnosis depends on testing practices and can occur at any point after infection. As a result, HIV diagnoses do not necessarily represent new infections. To provide reliable and scientifically valid local, state, and national estimates of the number of newly acquired infections (diagnosed and undiagnosed), selected surveillance programs conduct HIV incidence surveillance (HIS). HIS data are used to (1) describe the characteristics of newly infected populations and subgroups; (2) monitor trends in transmission; (3) assist with local, state, and national planning and evaluation activities; and (4) monitor the outcomes of HIV prevention programs and strategies.

As an integrated component of the NHSS, HIS jurisdictions incorporate into routine case surveillance the collection of additional data elements. HIS jurisdictions obtain data on history of HIV testing and antiretroviral use from patient interviews, medical record reviews, provider reports, records of partner services, and HIV laboratory test results sent to health departments. HIS jurisdictions also collect remnant diagnostic HIV-positive blood specimens for testing using an immunoassay for recency to distinguish between recent and longstanding infections on a population level. Using a stratified extrapolation approach, data on the history of testing and antiretroviral use, recency test results, and other case surveillance data are extrapolated to the general population to generate estimates of HIV incidence.1922

Other activities

Select jurisdictions opt to conduct additional activities under HIV case surveillance, including molecular HIV surveillance, perinatal HIV exposure reporting, and geocoding of HIV surveillance data (Figure 2).23,24

Figure 2.

Participating jurisdictions, purpose, methods, and practical application of data collected for each optional activity conducted under HIV case surveillance in the U.S., 2013

Figure 2

HIV = human immunodeficiency virus

ART = antiretroviral therapy

Security and confidentiality standards

One goal of NCHHSTP is to strengthen collaborative work across disease areas and integrate services that are provided by state and local programs for the prevention of HIV, viral hepatitis, other STDs, and TB. A past barrier to achieving this goal was the lack of standardized data security and confidentiality procedures. In 2011, NCHHSTP released the “Data Security and Confidentiality Guidelines for HIV, Viral Hepatitis, Sexually Transmitted Disease, and Tuberculosis Programs: Standards to Facilitate Sharing and Use of Surveillance Data for Public Health Action,” which recommends standards for all NCHHSTP programs to facilitate the secure collection, storage, and use of data while maintaining confidentiality.25 State, local, and territorial HIV surveillance programs have been encouraged to implement these standards to enhance the use of HIV surveillance data across programs.

Program collaboration and service integration

HIV surveillance programs have been encouraged to support NCHHSTP's strategic priority of program collaboration and service integration (PCSI). PCSI promotes improved integration of HIV, viral hepatitis, STD, and TB prevention and treatment services at the client level through enhanced collaboration at the health department jurisdictional level, as well as organizational program level. PCSI allows opportunities to (1) increase efficiency, reduce redundancy, and eliminate missed opportunities; (2) increase flexibility and better adapt to overlapping diseases and risk behaviors; and (3) improve operations through the use of shared data.26

OUTCOMES

HIV surveillance data provide accurate and timely information to (1) monitor and characterize the trends and burden of HIV infection; (2) ensure a reliable measure of the number of people in need of HIV prevention and care services; (3) plan, prioritize, and allocate resources for HIV prevention, intervention, and care programs; and (4) monitor and evaluate the impact of HIV prevention, intervention, and care programs on the key outcome indicators of the NHAS. The NHSS will continue to evolve and expand as the need for high-quality HIV surveillance data increases.

LESSONS LEARNED

The major lessons learned regarding the development and maintenance of a highly functional and useful NHSS are as follows:

  1. Surveillance programs must establish and maintain relationships with providers and laboratories to ensure complete and timely reporting. Although all jurisdictions have reporting regulations, not all providers and laboratories consistently adhere to them.

  2. Standardization and complete entry of laboratory data is needed to provide an accurate picture of HIV in the U.S. Efforts have been made to improve and standardize the entry of laboratory data into eHARS.

  3. HIV surveillance data can be used for public health action by monitoring access to care in jurisdictions with complete laboratory reporting. NCHHSTP has developed a standard set of security and confidentiality guidelines encouraging increased data sharing among surveillance programs, HIV prevention, and other disease programs to help facilitate this action.

Footnotes

The findings and conclusions in this article are those of the authors and do not necessarily represent the views of the Centers for Disease Control and Prevention.

REFERENCES

  • 1.Glynn MK, Lee LM, McKenna MT. The status of national HIV case surveillance, United States 2006. Public Health Rep. 2007;122(Suppl 1):63–71. doi: 10.1177/00333549071220S110. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 2.Centers for Disease Control and Prevention (US) HIV surveillance report: diagnoses of HIV infection in the United States and dependent areas, 2011. 2013. [cited 2013 Jun 11]. Available from: URL: http://www.cdc.gov/hiv/topics/surveillance/resources/reports.
  • 3.Centers for Disease Control and Prevention (US) HIV surveillance supplemental report: monitoring selected national HIV prevention and care objectives by using HIV surveillance data—United States and 6 U.S. dependent areas—2011. 2013. [cited 2013 Dec 31]. Available from: URL: http://www.cdc.gov/hiv/pdf/2011_-Monitoring_HIV_Indicators_HSSR_final.pdf.
  • 4.Gray KM, Cohen SM, Hu X, Li J, Mermin J, Hall HI. Jurisdiction level differences in HIV diagnosis, retention in care, and viral suppression in the United States. J Acquir Immune Defic Syndr. 2014;65:129–32. doi: 10.1097/QAI.0000000000000028. [DOI] [PubMed] [Google Scholar]
  • 5.Hall HI, Gray KM, Tang T, Li J, Shouse L, Mermin J. Retention in care of adults and adolescents living with HIV in 13 U.S. areas. J Acquir Immune Defic Syndr. 2012;60:77–82. doi: 10.1097/QAI.0b013e318249fe90. [DOI] [PubMed] [Google Scholar]
  • 6.Mahle Gray K, Tang T, Shouse L, Li J, Mermin J, Hall HI. Using the HIV surveillance system to monitor the National HIV/AIDS Strategy. Am J Public Health. 2013;103:141–7. doi: 10.2105/AJPH.2012.300859. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 7.White House, Office of National AIDS Policy (US) National HIV/AIDS strategy. 2010. [cited 2013 Jun 11]. Available from: URL: http://www.whitehouse.gov/administration/eop/onap/nhas.
  • 8.Current trends update: acquired immunodeficiency syndrome—United States. MMWR Morb Mortal Wkly Rep. 1986;35(49):757–60. [PubMed] [Google Scholar]
  • 9.Fleming PL, Ward JW, Janssen RS, De Cock KM. Guidelines for national human imunodeficiency virus case surveillance, including monitoring for human immunodeficiency virus infection and acquired immunodeficiency syndrome. MMWR Recomm Rep. 1999;48(RR-13):1–28. [PubMed] [Google Scholar]
  • 10.Lansky A, Brooks JT, DiNenno E, Heffelfinger J, Hall HI, Mermin J. Epidemiology of HIV in the United States. J Acquir Immune Defic Syndr. 2010;55(Suppl 2):S64–8. doi: 10.1097/QAI.0b013e3181fbbe15. [DOI] [PubMed] [Google Scholar]
  • 11.Centers for Disease Control and Prevention (US) Atlanta: CDC; 2009. Enhanced HIV/AIDS Reporting System. [Google Scholar]
  • 12.Revised surveillance case definitions for HIV infection among adults, adolescents, and children aged <18 months and for HIV infection and AIDS among children aged 18 months to <13 years—United States, 2008. MMWR Recomm Rep. 2008;57(RR-10):1–12. [PubMed] [Google Scholar]
  • 13.Centers for Disease Control and Prevention (US) Summary of the 2012 consultation on revision of the HIV surveillance case definition. [cited 2013 Jun 11]. Available from: URL: http://www.cdc.gov/hiv/resources/reports/pdf/HIV_Case_Def_Consult_Summary.pdf.
  • 14.Department of Health and Human Services (US), Panel on Antiretroviral Guidelines for Adults and Adolescents. Guidelines for the use of antiretroviral agents in HIV-1 infected adults and adolescents. [cited 2013 Jun 11]. Updated 2013 Feb 12. Available from: URL: http://www.aidsinfo.nih.gov/contentfiles/lvguidelines/adultandadolescentgl.pdf.
  • 15.Karch DL, Chen M, Tang T. Evaluation of the National Human Immunodeficiency Virus Surveillance System for the 2011 diagnosis year. J Public Health Manag Pract. 2013 Dec 18; doi: 10.1097/PHH.0000000000000033. [Epub ahead of print] [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 16.Hall HI, Mokotoff ED. Setting standards and an evaluation framework for human immunodeficiency virus/acquired immunodeficiency syndrome surveillance. J Public Health Manag Pract. 2007;13:519–23. doi: 10.1097/01.PHH.0000285206.79082.cd. [DOI] [PubMed] [Google Scholar]
  • 17.Centers for Disease Control and Prevention and Health Resources and Services Administration (US) Atlanta: CDC; 2004. [cited 2014 Jan 31]. Integrated guidelines for developing epidemiologic profiles: HIV prevention and Ryan White CARE Act community planning. Also available from: URL: http://www.cdph.ca.gov/programs/aids/Documents/GLines-IntegratedEpiProfiles.pdf. [Google Scholar]
  • 18.Centers for Disease Control and Prevention (US) National HIV prevention progress report, 2013. [cited 2013 Dec 31]. Available from: URL: http://www.cdc.gov/hiv/pdf/policies_NationalProgressReport.pdf.
  • 19.Hall HI, Song R, Rhodes P, Prejean J, An Q, Lee LM, et al. Estimation of HIV incidence in the United States. JAMA. 2008;300:520–9. doi: 10.1001/jama.300.5.520. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 20.Prejean J, Song R, Hernandez A, Ziebell R, Green T, Walker F, et al. Estimated HIV incidence in the United States, 2006–2009. PLoS One. 2011;6:e17502. doi: 10.1371/journal.pone.0017502. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 21.Vital signs: HIV infection, testing, and risk behaviors among youths—United States. MMWR Morb Mortal Wkly Rep. 2012;61(47):971–6. [PubMed] [Google Scholar]
  • 22.Centers for Disease Control and Prevention (US) HIV surveillance supplemental report: estimated HIV incidence in the United States, 2007–2010. 2012. [cited 2014 Jan 31]. Available from: URL: http://www.cdc.gov/hiv/pdf/statistics_hssr_vol_17_no_4.pdf.
  • 23.Centers for Disease Control and Prevention (US) HIV surveillance supplemental report: enhanced perinatal surveillance—15 areas, 2005–2008. 2011. [cited 2014 Jan 31]. Available from: URL: http://www.cdc.gov/hiv/pdf/statistics_2005_2008_HIV_Surveillance_Report_vol_16_no2.pdf.
  • 24.Centers for Disease Control and Prevention (US) HIV surveillance supplemental report: social determinants of health among adults with diagnosed HIV infection in 18 areas, 2005–2009. [cited 2014 Jan 31]. Available from: URL: http://www.cdc.gov/hiv/pdf/statistics_2005_2009_HIV_Surveillance_Report_vol_18_n4.pdf.
  • 25.Centers for Disease Control and Prevention (US) Atlanta: CDC, Department of Health and Human Services (US); 2011. [cited 2013 Jun 11]. Data security and confidentiality guidelines for HIV, viral hepatitis, sexually transmitted disease, and tuberculosis programs: standards to facilitate sharing and use of surveillance data for public health action. Also available from: URL: http://www.cdc.gov/nchhstp/programintegration/docs/PCSIDataSecurityGuidelines.pdf. [Google Scholar]
  • 26.Centers for Disease Control and Prevention (US) Program collaboration and service integration: enhancing the prevention and control of HIV/AIDS, viral hepatitis, sexually transmitted diseases, and tuberculosis in the United States. 2009. [cited 2013 Jun 11]. Available from: URL: http://www.cdc.gov/nchhstp/ProgramIntegration/docs/207181-C_NCHHSTP_PCSI%20WhitePaper-508c.pd.

Articles from Public Health Reports are provided here courtesy of SAGE Publications

RESOURCES