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HIV Infection Reporting

March 19, 2007

Surveillance data on HIV infections provide a more complete picture of the HIV/AIDS epidemic and the need for prevention and care services than does the picture provided by AIDS data alone. Therefore, to better monitor the patterns of HIV infection diagnoses, many states and U.S.-dependant areas have implemented HIV surveillance in addition to AIDS surveillance.

Even though many states and dependant areas conduct HIV surveillance, not all of them collect HIV data the same way. Most states and dependant areas use confidential name-based reporting, but some use other methods. The different methods of collecting data pose a challenge when compiling national data. To address the problem, CDC advised in 1999 that all US states and dependent areas conduct confidential name-based HIV case surveillance as part of their AIDS case surveillance activities.1 This advice was strengthened to a recommendation in 2005.2 Compared with HIV reporting systems based on other types of identifiers (such as those based on a code or name-to-code), confidential name-based HIV reporting has proven to be more cost-effective, and it routinely achieves high levels of accuracy and reliability. Confidential name-based HIV infection reporting is consistent with reporting for other infectious diseases, including AIDS. As of February 2007, confidential name-based HIV infection reporting was being conducted by 47 states, the District of Columbia and 5 dependent areas. It is anticipated that all states and US dependent areas will soon use confidential name-based reporting for HIV surveillance.

To ensure the validity of the data, CDC includes HIV infection data from states and dependent areas that have conducted confidential name-based HIV infection reporting for at least 5 years (i.e., since at least 2001), which allows time for stabilization of data collection and for adjustment of the data in order to monitor trends. Therefore, CDC's HIV/AIDS surveillance report for 2005, published in 2006, includes data from 33 states and 5 dependent areas.3 (See below for a list of these 33 states and 5 dependent areas.)

It is important to keep in mind that the number of new HIV diagnoses does not necessarily reflect trends in HIV incidence (i.e., new infections) because some persons were infected recently and others were infected some time in the past. One method for estimating HIV incidence is to apply the serologic testing algorithm for recent HIV seroconversion (STARHS) to the serum specimens from which the diagnosis of HIV infection was made. A total of 34 states and dependant areas are using this method to estimate population-based HIV incidence. The monitoring of HIV incidence will be critical in evaluating progress in decreasing the number of HIV infections that occur each year and in allocating resources and evaluating the effectiveness of prevention programs.

To safeguard the confidentiality and security of the data, CDC published guidelines in 2006 to ensure that data in the HIV/AIDS surveillance system are held under the highest of security standards and with the most stringent protections.4 The guidelines were based on consultations with state HIV/AIDS surveillance coordinators, CDC's Divisions of STD Prevention and TB Elimination, and security and computer staff in other CDC centers and offices and were reviewed by staff in the state and local surveillance programs.

Because CDC recommends that all states and dependant areas conduct HIV infection reporting by using the same confidential name-based approach that is used for AIDS surveillance nationwide, the agency is committed to providing the technical assistance necessary to help states and dependant areas implement this method of reporting rapidly and with minimal disruption to ongoing surveillance.2 As more states and dependant areas integrate confidential name-based HIV infection reporting and AIDS reporting, CDC's ability to effectively and appropriately allocate prevention resources and design prevention interventions will continue to improve.

Name-BasedCode-BasedNot Implemented
Alabama
Alaska
American Samoa
Arizona
Arkansas
California1
Colorado
Connecticut
Delaware1
District of Columbia1
Florida
Georgia
Guam
Idaho
Illinois1
Indiana
Iowa
Kansas
Kentucky
Louisiana
Maine1
Massachusetts1
Michigan
Minnesota
Mississippi
Missouri
Montana1
Nebraska
Nevada
New Hampshire
New Jersey
New Mexico
New York
North Carolina
North Dakota
Northern Mariana Islands
Ohio
Oklahoma
Oregon1
Pennsylvania2
Puerto Rico
Rhode Island1
South Carolina
South Dakota
Tennessee
Texas
U.S. Virgin Islands
Utah
Virginia
Washington1
West Virginia
Wisconsin
Wyoming

Hawaii
Maryland
Vermont

Marshall Islands
Palau
Federated States of Micronesia

Note: States in italics offer only confidential and not anonymous HIV testing. All other U.S. states and territories offer both confidential and anonymous testing.

1

Illinois and Maine switched to name-based HIV reporting January 1, 2006.
Delaware switched to name-based reporting effective February 10, 2006.
Washington switched to name-based reporting effective March 9, 2006.
California switched to name-based reporting effective April 17, 2006.
Oregon switched to name-based reporting effective April 17, 2006.
Rhode Island switched to name-based reporting effective July 14, 2006.
Montana switched to name-based HIV reporting September 8, 2006.
District of Columbia switched to name-based reporting November 17, 2006.
Massachusetts switched to name-based reporting January 1, 2007.

2 Philadelphia, PA switched to name-based HIV reporting October 2005.
3 These states conduct HIV case surveillance using coded identifiers. Each state conducts follow-up activities to fill in gaps in the information received and longitudinally updates information on clinical status using the code.


References

  1. CDC. Guidelines for national human immunodeficiency virus case surveillance, including monitoring for human immunodeficiency virus infection and acquired immunodeficiency syndrome. MMWR 1999;48(RR-13);1-28.
  2. CDC. Dear Colleague letter re name-based HIV reporting, from Julie Gerberding. July 2005.
  3. CDC. HIV/AIDS Surveillance Report, 2005. Vol 17. Atlanta: U.S. Department of Health and Human Services, CDC; 2006:1-54.
  4. Centers for Disease Control and Prevention and Council of State and Territorial Epidemiologists. Technical Guidance for HIV/AIDS Surveillance Programs, Volume III: Security and Confidentiality Guidelines. Atlanta, Georgia: Centers for Disease Control and Prevention; 2006.




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