November 15, 1999

In one of the largest studies to date, a team of AIDS researchers concludes
that name-based reporting programs for HIV infection are not producing specific
public health benefits in the effort to control the AIDS epidemic.
The study is the first multi-state, random survey to examine how HIV
name-reporting affects public health interventions.  It was conducted by a team
from UC San Francisco, UC Berkeley, eight state health departments, and the
Centers for Disease Control and Prevention.

The research results, published in the November 16 issue of Annals of Internal
Medicine, present more data in the ongoing policy debate over the advantages
and disadvantages of name-reporting of HIV infection.  This reporting system is
required by law in 31 states, but it remains controversial.  All states
require name-reporting of an AIDS diagnosis.

Name-reporting of HIV infection—which also is known as name-based HIV
surveillance—requires that all adults who test positive for HIV be reported by
name to a public health department unless the HIV test is done at a site that
specifically offers anonymous HIV testing.  Most states, including the majority
with laws requiring HIV name- reporting, provide some sites where an anonymous
HIV test can be obtained.  In anonymous HIV testing, the result is linked to an
identification number and not a person’s name.

HIV name-reporting, according to some advocates, is beneficial because it sets
up the potential for the health department to assist HIV-positive individuals
in receiving timely medical treatment and in notifying their sex and
needle-sharing partners about possible exposure to the AIDS virus.  Opponents
of HIV name-reporting have feared that the policy could be a deterrent to
persons seeking care for HIV.

“We found both the positive and the negative ways that name-based surveillance
programs supposedly affect public health interventions-specifically partner
notification and access to health care-to be exaggerated.  Our data showed no
effect one way or the other.  The findings do open up discussion as to whether
public health funds spent on these interventions are being used in the most
effective way,” said Dennis Osmond, PhD, lead author of the Annals article and
associate professor in the UCSF Department of Epidemiology and Biostatistics
and UCSF Center for AIDS Prevention Studies (CAPS).

In understanding this subject, Osmond also noted that name-based HIV reporting
should not be confused with name-based AIDS reporting.  HIV reporting applies
to persons who are undergoing testing to find out if they have HIV infection. 
AIDS reporting applies to HIV-positive persons who are newly diagnosed with the
disease AIDS or its complications.  This diagnosis, which is made by a health
care provider, is always attached to an individual’s name and is reported to a
public health department in all 50 states.

The study involved close to 2,000 HIV-positive persons who were newly diagnosed
with AIDS during 1995-96.  At the time, participants came from five states that
had name-based reporting policies (Arizona, Colorado, Mississippi, Missouri,
North Carolina) and three that did not (Texas, Oregon, and New Mexico).  New
Mexico has since passed a name-based surveillance law.

Personal interviews took place with all study participants, and they
self-reported their experience with HIV testing, getting into care for HIV,
contact with the health department, and notification to at-risk sex and
needle-sharing partners. The sample included men who had sex with men, persons
who used injection drugs, and heterosexual persons randomly selected from newly
reported AIDS cases in each state.

## The main study findings include:

* Health department follow-up of a reported HIV infection was not associated
with more timely medical care after a positive HIV test result. 
* Among persons who delayed medical care after their first positive HIV test
results, only about 9 percent gave concern about being reported by name as a
reason.  No one gave name-reporting as the main reason.
* Name-reporting did not seem to increase the number of sex and
needle-sharing partners notified by an HIV-positive person.  Both those who
underwent anonymous testing (and therefore were not reported to the health
department) and those who were tested by name and reported to the state health
department in the states with HIV name-reporting notified an average of four
partners about their infection status.  Those who underwent anonymous testing
reported the number that they notified personally, while those tested by name
in states with name-reporting reported the number they notified personally plus
the number they notified through the public health department.

“I expect that HIV name-reporting will remain controversial because it raises
several sets of controversial issues, such as the potential effect of delaying
or avoiding an HIV test, the value for monitoring the HIV/AIDS epidemic,  and
the value of public health interventions.  However, separating the issues about
surveillance itself from the issues about the use of surveillance to deliver
the public health interventions that we evaluated would help focus the debate,”
Osmond said.

Arthur Reingold, MD, professor of epidemiology in the School of Public Health
at UC Berkeley, was principal investigator of the study.  Co-investigators
were Andrew Bindman, MD; Karen Vranizan, MA; Frederick Hecht, MD, and Dennis
Keane, MPH, of UCSF and San Francisco General Hospital Medical Center; and J.
Stan Lehman, MPH,  of CDC.

The study was funded by CDC as part of the Multistate Evaluation of
Surveillance for HIV (MESH) project.

UCSF CAPS is part of the UCSF AIDS Research Institute, a campuswide enterprise
without walls that encompasses all UCSF AIDS programs under a single umbrella
and includes close to 1,000 investigators.  Thomas J. Coates, PhD, is director
of UCSF CAPS and executive director of UCSF ARI.