Currently, the CDC only requires physicians to report the names of people diagnosed with AIDS to local and state health departments. But such information is now unable to accurately capture new trends in the HIV epidemic. Virtually everyone agrees that to create a more complete picture of the epidemic, surveillance of HIV (as opposed to AIDS) is essential. But the question is, will HIV surveillance require the reporting of people's names or will a system of coded information that protects confidentiality be used?
The Gay and Lesbian Medical Association (GLMA), along with organizations such as the Lambda Legal Defense and Education Fund, the Latino Commission on AIDS in New York City, and the National Association of People With AIDS, believes that named HIV reporting would be detrimental to testing and treatment efforts. GLMA is an organization of gay and lesbian physicians, many of whom have been treating HIV and AIDS since the onset of the epidemic.
It is the direct experience of our member physicians that has led GLMA to agree with the CDC that an HIV surveillance system is necessary to confront a disease that continues to take a tremendous human, financial, and spiritual toll on our communities. First-hand knowledge by these physicians about homophobia and discrimination toward gay people, people of color, women, and those infected with HIV leads us to question whether names reporting is the proper surveillance tool and to support alternative surveillance methods, such as unique identifiers (codes that relate patient information) or computer encryption.
The CDC has made it clear that not only will HIV surveillance data be used to track the epidemic but that this information may also be used by other branches of the federal health department to determine how much money a state is given for the medical treatment of people with HIV. Linking numbers to funding will place immense pressure on public health officials and politicians, rightly intent on leveraging the maximum funding available to treat those with HIV, to ensure that all those infected are captured within the surveillance system. Such pressure could lead states to choose methods of tracking people with HIV that are more "full proof" -- such as names-based reporting -- yet are more vulnerable to security breaches. This pressure could also force states to outlaw anonymous testing and to link HIV surveillance to partner notification in an attempt to ensure that every HIV infected individual is identified and reported.
Currently, 28 states have implemented names reporting, but these states comprise only one-third of the people with AIDS in this country. How would a move to names-based reporting impact states such as California and New York where HIV has hit hardest? Surveys conducted of people of color in New York City indicate that names reporting would deter many people from getting the testing and treatment they need. This is a dangerous sign that should not be ignored.
Further, one-third of the states that require names reporting also have passed laws that eliminate anonymous HIV test sites, even though anonymous testing has repeatedly been shown to be the best method of counseling those at risk and helping those who are already infected to enter treatment. For people in these states the options are: be willing to give your name or live without knowing your HIV status. No one should have to make such a choice.
Both Texas and Maryland have experimented with non-names-based unique identifier surveillance systems. Both have seen an overall increase in the completeness and accuracy of data over the three years they have been used -- a positive sign that even the CDC can't discount.
Ultimately, any picture of the epidemic can only reflect those who choose to be tested. Certainly, we can extrapolate from any statistics that are collected. But the most compete picture will be obtained through the creation of a system that encourages people to be tested and get treatment, and that has the financial backing by the government to ensure that treatment is available to all who need it. To that end, surveillance is necessary. Names, however, are not. :