Mandatory HIV Case Reporting

In the debate about "names reporting" -- whether the government should collect the names of all who test positive for HIV -- public officials should take care to understand some realities about testing and about many communities' experiences with government agencies.

The failure to appreciate the impact of class and social group differences on people's views of names-based reporting is a fatal flaw. Those who have had no experience with the criminal justice system, with reliance on government-sponsored benefits programs for subsistence or health care, or with having their family relationships monitored and judged by a government case worker, may not fully comprehend why the government and the legal system so often can be experienced as hostile forces to be avoided. For those who mistrust government or its enthusiasm for protecting them -- and gay men of all races and people of color historically have good reason to do so -- reassurances about the safety of surveillance data are unpersuasive.

Already, significant numbers of people avoid getting tested, and numerous studies show that names reporting would worsen this pattern.

Statistics from New Jersey, which mandated names reporting in 1992, point to evidence that people are unwilling to test under such circumstance. As of September 1997, New Jersey has reported only 12,955 cases of non-AIDS HIV -- but that is less than one-third of the federal Centers for Disease Control and Prevention's conservative estimate of how many people likely are infected. More data through names reporting will not improve understanding about the size of the epidemic, nor will it address needs to better fund HIV prevention and testing programs. The information we already have has generated little or no programmatic response to the increase in infection rates among young adults or among injection drug users. (Witness, for example, the federal government's refusal to fund syringe exchange programs, despite the documented efficacy of these programs in slowing transmission among injection drug users.) Since broad, anonymous seroprevalence surveys clearly provide the best, most representative data, why should we insist on names as well?

There also is ample reason to fear that the collection of names could be used, with the wave of a legislative pen, for purposes beyond monitoring the epidemic. There already are disturbing instances of the easy legislative shift to misuse of AIDS-related surveillance data. In Texas, for example, the State Health Department provides HIV test results of persons charged with sex offenses to prosecutors for the purpose of enhanced criminal penalties. Illinois has adopted a measure, not yet implemented, which allows use of AIDS case reports to track down HIV infected health care workers. The prospect of laws which involve public health officials in criminal prosecutions or make a positive HIV test the basis for losing a job will only compound the fear that many still have of finding out that they have HIV. Why get tested if doing so exposes one to this raft of potential problems?

Adoption of any system of HIV surveillance which ignores the views of the communities the system targets, or which further discourages people at risk of infection from getting tested, is doomed to failure. It is critical that a proposal to radically change current HIV surveillance respect that reality.

Catherine Hanssens is AIDS Project Director, Lambda Legal Defense and Education Fund.

This article was reprinted from the Spring/Summer 1998 edition of The Lambda Update, the tri-annual newsletter of Lambda Legal Defense and Education Fund.