The debate over how HIV and AIDS should be reported is not a new one. For years proponents of named HIV reporting and their opponents have squared off in heated confrontations across the United States. The issue is such a complex one that at times, groups have changed positions on the subject, in response to changing laws and public opinion. While both sides agree that HIV and AIDS need to monitored and reported, the way in which it is accomplished. Is named HIV/AIDS reporting good or bad?
Current Status
Currently, in all US states, if someone has an AIDS diagnosis, they are reported to the health department of the state in which they live. That reporting is by name. While the state does have a list of people diagnosed with AIDS, there is no federal list of all people diagnosed with AIDS defining illness. In addition, the information gather by each state with regards to AIDS is reported to the federal goverment but only for statistical purposes. No names or demographic information is attached to those statistics.
In the case of HIV, some states currently report by name others do not. As of 2003, 35 states have named-based reporting; 8 states and Washington DC have code-based reporting; and 5 states have name-to-code based reporting (cases are initially reported by name, but are converted to code after public health follow-up and collection of epidemiologic data).
Footnotes:
1. Most states offer confidential and anonymous testing, however, these states only offer confidential testing and does not offer anonymous HIV testing.
2. Connecticut requires name-based reporting of HIV infection in children under 13 years of age. Reports of HIV infection for adults/adolescents 13 and older is by name or code.
3. Anonymous HIV reporting. Georgia does not conduct follow-up activities on HIV case information.
4. New Hampshire allows HIV cases to be reported with or without a name.
5. Name-based reporting was implemented in areas outside Philadelphia in October 2002. Reporting policies were not yet implemented in Philadelphia as of December 2002.
6. Washington requires name-based reporting of symptomatic HIV infection (as defined by CDC classification of Group IV non-AIDS--CDC 1986) and AIDS, and has a name-to-code system for reporting asymptomatic HIV cases.
What's all the Fuss About?
So why is named reporting such a big deal? Isn't it assumed that such information would be kept confidential? Doesn't the need to control the epidemic make named reporting a must? But what about confidentiality? What will be done with these names when they are assembled? And how will named reporting impact the rights of people living with HIV? These are all valid questions. Let's look at arguements for both sides.