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CDC Guidelines for Improved Data on U.S. HIV Epidemic
New Systems Urgently Needed to Guide Prevention Efforts

December 1999

The Centers for Disease Control and Prevention (CDC) has released guidelines to assist states in the design and implementation of effective systems to track the course of the HIV epidemic. In the wake of recent treatment advances, which have slowed the progression from HIV to AIDS for many individuals, data on AIDS cases alone can no longer be reliably used to direct prevention efforts to communities currently at greatest risk. To address the need for information to ensure effective targeting of prevention services, in September 1997, CDC called for all states and territories to conduct HIV case surveillance as an extension of their AIDS surveillance programs.

As of November 1999, thirty-four states and the Virgin Islands(1) had implemented HIV surveillance using the same reporting system for both HIV and AIDS cases; two of these states conduct pediatric surveillance only. Four additional states(2) and Puerto Rico use coded unique identifiers for HIV case reporting. Washington State is using a combination approach. The Guidelines for National HIV Surveillance, Including Monitoring for HIV Infection and Acquired Immunodeficiency Syndrome are designed to advise states on the best practices to ensure both quality and confidentiality of HIV data.

The Guidelines represent the culmination of a lengthy effort by CDC, in conjunction with communities and public health partners nationwide, to address emerging information needs and issues surrounding the effective implementation of HIV reporting. The recommendations were designed to ensure that systems address several goals including:

  1. the provision of accurate and reliable data to effectively direct HIV prevention and treatment programs to affected communities;

  2. the strict confidentiality of HIV data, including controlled access and strong penalties for abuse; and

  3. continued support for anonymous testing options so that systems do not deter individuals at risk from accessing HIV testing, treatment, and prevention services.

Criteria for Quality and Confidentiality

The guidance document outlines performance criteria to ensure the quality and confidentiality of HIV data. These criteria are described in detail in the recommendations, but include strict confidentiality procedures and protections (e.g., computer encryption, physical security, limited access, and penalties for abuse) and quality standards for data to ensure completeness (over 85% of diagnoses must be reported), timeliness (over 66% of diagnoses are reported within 6 months of diagnosis), unduplicated reports (less than 5% of cases should be duplicate reports of a single case), and the ability to follow-up with providers on cases of public health importance (e.g., unusual modes of transmission or strains). These standards should ensure that funding agencies and affected communities alike can continue to rely on surveillance data to accurately represent the impact of the epidemic and the need for prevention and treatment services.

CDC Recommendations

Based on published evaluations to date, CDC has concluded that name-based HIV surveillance systems are currently the most likely system to meet the necessary performance standards and provide the quality data necessary to direct community prevention and treatment programs. CDC therefore advises that state and local surveillance programs use the same name-based approach for HIV surveillance as is currently used for AIDS surveillance nationwide.

CDC's policy does allow for flexibility if states wish to implement alternative systems. CDC has and will continue to provide financial and technical assistance to states working to design systems that rely on codes or "unique identifiers" (UIs) rather than names. Given the importance of these data for directing services and care to individuals with HIV infection, all states will be required to meet the specified performance criteria to ensure both the quality and confidentiality of the data.

During the next few years, CDC will assist states in implementing HIV surveillance systems, evaluating current performance levels, revising systems as necessary, and reassessing performance. After this transition period, CDC will evaluate and award proposals for federal funding of state and local surveillance programs based on their capacity to meet the performance standards. At that time, CDC will work with states to adopt surveillance methods that will enable them to achieve these standards.

Efforts to Evaluate and Address Concerns About Name-Based HIV Reporting

While there is widespread support for expanded HIV reporting, many people still have concerns regarding name-based reporting of HIV infection. Concerns about name-based HIV reporting have focused largely on confidentiality, potential non-public health uses of data, the impact of reporting on test-seeking behavior, and access to anonymous testing.

CDC recognizes these concerns and the greater sensitivity of HIV case data. CDC has worked for several years to evaluate and address these issues. The agency has conducted several scientific assessments and has consulted with a diverse group of individuals and organizations from the scientific, public health, and AIDS advocacy communities. The Guidelines present the results of these assessments in more detail, but several key steps have been taken, including the following:


  1. Alabama, Alaska, Arizona, Arkansas, Connecticut (pediatric only), Colorado, Florida, Idaho, Indiana, Iowa, Kansas, Louisiana, Michigan, Minnesota, Mississippi, Missouri, Nebraska, Nevada, New Jersey, New Mexico, North Carolina, North Dakota, Ohio, Oklahoma, Oregon (pediatric only), South Carolina, South Dakota, Tennessee, Texas, Utah, Virginia, West Virginia, Wisconsin, and Wyoming.

  2. Illinois, Maine, Maryland, and Massachusetts.

  3. Alabama, Idaho, Iowa, Mississippi, Nevada, North Carolina, North Dakota, South Carolina, South Dakota, Tennessee, and Wyoming.

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