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Naming Names

Winter 1998/1999

A line was drawn in the sand last year over the issue of names reporting. On one side the community (as defined by community groups such as Resist the List, NWAF and the hundreds of people who showed up at community meetings across the state) sent a resounding message to local health departments that they did not want names reporting. In fact, many say it will be dangerous as people will not get tested or will be afraid to seek health care services if they do test positive. Others say that this could be the beginning of the destruction of HIV-positive people's civil liberties. Laws that criminalize not only HIV transmission but HIV exposure are starting to appear in some states. Some believe that this is a result of HIV-positive people no longer "dying on time". It is implied that "AIDS carriers" are living longer and thus infecting more people.

On the other side, national and local health officials say that names reporting is the only way to track the spread of HIV/AIDS (which will help with prevention efforts), and to warn the partners of the people who test positive that they need to test. Health Department officials say that people with an AIDS diagnosis have had their names tracked for years. They also cite the fact that new drug therapies have helped keep people healthy so fewer people are being diagnosed with AIDS. The fact that more people with HIV infection are staying healthy means that AIDS reports no longer provide a good picture of the epidemic. State health officials want to start reporting HIV cases by name and use the information to allocate funding to programs like the AIDS Prescription Drug Program.

While many AIDS advocates agree that tracking HIV would be helpful, people with HIV, AIDS organizations and civil rights advocates have serious concerns about name-based HIV reporting. Community advocates have backed the development of an anonymous or unique identifier reporting system. Such an anonymous code would provide public health with important statistical information while protecting the privacy and confidentiality of people with HIV. But, the State Board of Health decided to ignore the unique identifier system and the concerns of the community and voted in October 1998 to pursue the development of name-based reporting.

However, community efforts finally convinced the King County Board of Health that names reporting might negatively impact local prevention efforts and cause HIV to spread even more rapidly. The County Board convened a task force to find areas of consensus between advocates of the two systems and to calm community fears. In January, the County Board voted to support named reporting, but only after adopting additional privacy protections recommended by the task force.

The task force's recommendations include the following provisions:

  • that names reported remain at the local or regional level and that health officials be allowed to report these cases to the state by unique identifier

  • that names will be destroyed within 90 days and only remain on file as a unique identifier

  • that named reporting only apply to new HIV cases reported after the system is adopted

  • that access to anonymous testing remain guaranteed throughout the state

  • that notification of partners by health officials remain voluntary and that doctors receive informed consent from patients before notifying public health officials

  • that the state initiate a campaign to educate people about the changes in HIV reporting and their choices for HIV testing and treatment that state law be revised to increase penalties for breaches of confidentiality.

On March 10th, the State Board of Health directed state health officials to create guidelines to include the above recommendations. Although the majority of AIDS advocates continue to oppose names reporting, it is hoped that the State Board will at least adopt the King County privacy recommendations on a statewide basis. Under a name-based system, these safety precautions will help instill trust in the system and encourage people to seek HIV testing and care. Although this plan is not as good as a unique identifier system, it is better than full-blown names reporting as originally proposed.

For more information on this issue, please contact the Public Policy and Communications Department at the Northwest AIDS Foundation at (206) 860-6340.

This article was provided by Seattle Treatment Education Project. It is a part of the publication STEP Perspective.
See Also
More About Policies on Reporting HIV Test Results in Western U.S. States


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