HIV & AIDS Surveillance
Most health organizations, HIV/AIDS groups and federal, state and local public health officials agree that it is essential to generate better data on the scope of the HIV epidemic. As AIDS deaths have declined and people live longer with HIV, a national picture of the epidemic based on the early stages of disease progression is necessary.
Currently, all people diagnosed with AIDS are reported by name to state and local health departments. State health departments delete patient-identifying information from the report and send the information to the Centers for Disease Control and Prevention for compilation.
The federal government does not require that any particular disease be reported to local, state or federal public health authorities. Each state individually makes that decision. If the federal government did mandate that HIV cases be reported, it would treat HIV-related diseases differently from other diseases.
Public health officials now work with communities across the country to develop effective HIV-surveillance systems — recognizing that local communities affected by HIV/AIDS must support any new system of data collection. This process should continue without mandates from the federal government.
While some organizations recommend the reporting of HIV by name, the National Alliance of State and Territorial AIDS Directors and the Association of State and Territorial Health Officials oppose federal mandates.
Twenty-eight states have implemented reporting of HIV by name. This, however, does not provide a legitimate rationale for mandating all states to do so. Approximately 75 percent of people living with HIV reside in states that do not implement a named-based system.
Mandatory reporting of the names of people with HIV to state and local health departments may discourage people from undergoing testing and seeking treatment. Despite confidentiality laws, potential for discrimination exists.
Because people with HIV live longer without symptoms, public health officials would have records of people with HIV for an extended period of time. Fears of breaches in confidentiality are real and legitimate. No comprehensive law protects the privacy and confidentiality of identifiable health information.
Unique-identifier reporting is an alternative to name-based reporting. In a unique-identifier system, a person with HIV would not be reported by name to public health officials, but rather by some form of a unique, non-identifying code.
Surveillance systems that are not based on names — such as unique-identifier reporting and population-based sampling — allow the collection of better data on HIV while protecting confidentiality. Such systems also do not discourage people from HIV testing. Several states are developing such systems and should receive support for their efforts.
To ensure that no person is deterred from seeking testing, anonymous testing options should be available in all states. A federal mandate would lead to the elimination of such testing and HIV home sample collection kits.
