all 50 states have been mandated to report AIDS cases by individual name.
Although discussion over the same mandate for HIV positive cases dates back
just as far, it has historically been a decision made individually by state.
There are currently 31 states with systems of name-based HIV reporting. However,
because treatment advances have resulted in greater numbers of individuals
living with HIV infection before the onset of AIDS, the surveillance of AIDS
cases will no longer be the most sensitive measure to monitor changes in the
epidemic. After careful consideration and research resulting in a guidance
document to be released early this year, the CDC concluded that a national
HIV surveillance system is “a public health priority,” and name-reporting
is a method which is being explored extensively.
A new surveillance
system is needed so that public health officials can gather reliable information
about the prevalence of HIV, the number of new cases diagnosed, and trends
that influence transmission. Name-reporting is useful because it allows
for the identification and elimination of duplicate reports. It also provides
a useful link to other public health data for further epidemiologic analysis
and for the provision of prevention and other services.
However, considerable
public opposition has surfaced out of concern that mandatory name reporting
will discourage people from getting tested and signal the end of anonymous
HIV testing altogether. In her article for POZ Magazine, Anna Forbes reports
that a California study found that more than 60% of individuals who were
tested anonymously stated that they would not have been tested if their
names were reported. The article expresses a blatant mistrust of confidentiality
laws. Despite their intent to protect privacy, Forbes describes instances
in which these laws have been breached by law enforcement or judicial subpoena.
Over the past several
years, the CDC has been working to address these concerns and to evaluate
alternative surveillance methods. In January 1997, the CDC published the
evaluation of a nameless, “unique identifier (UI)” system which created
codes for individuals based on a specific combination of partial numbers
including date of birth, social security number, gender, ethnicity, etc.
The evaluation revealed several problems with the UI system, including a
large number of reports with incomplete codes, difficulty in completing
follow-ups on specific cases, and the absence of behavioral risk data.
In a separate evaluation
of the impact of HIV surveillance on test-taking behavior, the CDC’s preliminary
findings indicate that name-reporting does not serve as “a major deterrent”
for at-risk individuals. Furthermore, the CDC asserts that if a national
name-based reporting system is mandated, it will continue to support the
availability of anonymous testing. This is not anticipated to interfere
with accurate tracking of HIV cases since the majority of HIV diagnoses
are typically made in confidential health care settings.
Opponents, however,
remain skeptical. They fear that efficiency and more productive data might
come at the cost of early testing and treatment. The CDC is scheduled to
release a draft of its HIV/AIDS surveillance guidance document for public
comment in the early part of this year.
Source: Centers for
Disease Control and Prevention, National Center for HIV, STD and TB Prevention.
(1998). Update/ January 1998, The Role of HIV Surveillance as U.S. Enters
New Era in the Epidemic.
Forbes, A. (1998).
Names Will Never Hurt You? POZ Magazine, (February), 62-65, 71.