Counselors informed CT clients about HIV reporting
requirements through verbal counseling, informed consent
forms, or information pamphlets . The methods used to inform health care providers
and the public about HIV reporting requirements and the
availability of anonymous testing services differed
among areas (Table 4).
Confidential reporting of HIV-infected persons by
name to health departments has been controversial and
many states have been unable to implement HIV reporting
policies because of opposition in the community. One
of the key concerns about HIV reporting is that it might
deter people at risk from being tested or seeking care.
In a recent position statement, the American Civil
Liberties Union stated that "name reporting is a
counterproductive public health measure that will cause
individuals to avoid testing."
The evidence on which such statements are based consists
mostly of surveys such as the one reported by Kegeles et
al, in which 60% of 180 persons surveyed in 1987 and
1988 would not be tested if positive results had to be
reported to health officials or if partner notification
("contact tracing") were conducted. These surveys on the
perceived and hypothetical barriers to testing have been
reviewed by Burris, who detected a number of flaws (some
of which we discuss later). He concluded that they do
not provide an "account of determinants of the
underlying social risk [to testing] . . . and so fail to
provide a basis for properly identifying what people are
afraid of through research." The evidence showing an
effect of HIV reporting on actual testing behavior is
scantier. In 1988, Johnson et al
showed that the rate of monthly attendance by MSM at an
alternative HIV test site decreased 51% in the first 24
months after the reporting of HIV-positive persons by
name became mandatory in South Carolina. In contrast
with these reports, a multistate survey of high-risk
populations conducted in 1996 found that only 2% of
people who had not been tested said that concern about
HIV reporting was the main reason they were not tested;
most could not correctly identify their state's
An analysis of data from the 1988 AIDS Knowledge and
Attitudes Survey of more than 20 000 people also found
no relationship between HIV reporting requirements and
previous or planned use of testing. Our results showing no large declines in the number of
persons (overall or among high-risk groups) seeking
testing at publicly funded CT sites after the
implementation of HIV reporting policies complement and
confirm these last 2 studies.
One reason for the differences in findings from these
studies is the populations studied. The studies that
focused on groups (eg, MSM) or persons seeking
anonymous testing) that have a greater interest in
confidentiality and discrimination issues were more apt
to find significant concerns about HIV reporting. Most
of the persons in the 1988 general population survey
were low-risk persons who would be less concerned about
HIV reporting. Among highly concerned groups, either
there must be heterogeneity of opinion or the perceived
risks stated in hypothetical surveys do not actually
result in avoidance of testing, as suggested by the lack
of declines in testing among MSM in our study. We found
declines in testing among blacks and injection drug
users in Louisiana, Michigan, and New Jersey after HIV
reporting began. In New Jersey, the declines were less
than 2% and were within the range expected for routine
year-to-year variation. In Louisiana, the declines were
consistent with overall declines in testing that were
present before HIV reporting was implemented, as
evidenced by the lack of significant differences in
trends before and after HIV reporting. The declines in
Louisiana may have been related to changes in CT program
policy that were occurring during the study period. For
example, many CT sites in this state had to be excluded
from the analysis because they had stopped offering
testing due to the low number of HIV-positive persons
identified. In addition, many CT sites repeatedly test
low-risk clients; over time, these sites may counsel
persons at lower risk to return for testing less often.
The declining trends for blacks and injection drug
users in Michigan were difficult to interpret because we
were not able to define a date of HIV reporting
implementation. Legislation on HIV reporting was enacted
in Michigan in 1988. However, because the health
department had no infrastructure to support additional
data collection, HIV case reports were not actively
solicited from physicians, clinicians, laboratories, and
institutions until April 1992. The active solicitation
of case reports was focused mostly on public providers
and was not accompanied by publicity. Most clients at CT
sites were probably unaware of this change in policy. In
addition, Magic Johnson's announcement was
especially felt in Michigan because he had once lived
there. His announcement was made in November 1991; in
our analysis, the data for the year before HIV reporting
included the months immediately after the announcement.
The decline in the number of tests after HIV reporting
could have been an artifact caused by a return to
baseline levels of testing after a transient increase
following the announcement. To further substantiate
this, we examined additional data from Michigan 1 year
after the study period; the number of tests for blacks
had increased 9% (from 21 792 to 23 726), and the number
of tests for injection drug users had increased 15%
(from 2347 to 2693). These levels were similar to the
levels in the year before the study period: 23 391 tests
for blacks and 3158 tests for injection drug users.
Another reason for differences in results may be the
timing of the studies. Many of the early studies were
conducted before the highly effective antiretroviral
therapies became available. As therapies have improved,
the advantages to the patient of early diagnosis and
treatment can provide a powerful incentive to testing,
and those advantages may outweigh concerns about HIV
reporting. Since the early years of the epidemic, there
has also been considerable experience with the security
and confidentiality of AIDS case-reporting data and with
issues of discrimination, which may have allayed the
concerns of persons considering HIV testing.
Case-reporting data for AIDS have been heavily relied on
to allocate resources and services for infected
patients. Populations who benefit from these services
may understand the need for this information and be
willing to provide it.
Anonymous testing was available in 4 of the states in
our study. Reports have suggested that the introduction
of anonymous testing increases testing in high-risk
populations and the elimination of it decreases testing
in these groups.
In Nevada and Tennessee, where anonymous testing was not
available, overall testing increased after HIV
reporting; however, a small decline in testing occurred
among MSM in Tennessee. If there had been no access to
anonymous testing in the other states, more declines in
testing after HIV reporting policies might have been
seen. In the states where we could evaluate anonymous vs
confidential testing, the percentage of tests that were
anonymous decreased from 15% to 13% in Louisiana and
increased from 43% to 50% in Nebraska before and after
HIV reporting. From these results we conclude that there
may be some persons who wish to test anonymously and
concur with the recent recommendation of the Council of
State and Territorial Epidemiologists
that states considering HIV reporting policies should
make anonymous testing available.
The HIV CT data system has a number of limitations
because it is designed to measure delivery and use of
testing services, not to support a rigorous analysis of
testing patterns. The system measures the number of
tests rather than the number of persons tested; thus,
people may be tested multiple times and the results
cannot be identified as coming from repeat tests. Each
state CT program is unique and policy changes (eg, in
funding, personnel, testing resources, advice given by
counselors on when to return for retesting, site
selection), media events, availability of other testing
services in the community, and many other factors
unrelated to HIV reporting may have affected the secular
trends in testing. We tried, through our survey of CT
coordinators and our site exclusion criteria, to account
for some of the main factors that coincided with the
implementation of HIV reporting. Finally, these data are
not representative of testing trends in the offices of
private physicians or other settings where persons may
be tested. Despite these limitations, the number and
variety of publicly funded CT sites and the large
numbers of persons who use those testing services make
it unlikely that a large adverse effect of HIV reporting
on testing would have been missed.
With the changing trends in clinical AIDS incidence
(-6% between 1995 and 1996) and AIDS deaths (-23%
between 1995 and 1996) brought about by improved
therapies, information on HIV-infected non-AIDS cases
obtained through HIV case reporting will be needed for
monitoring, planning, and allocation of resources for
prevention and clinical services. As states implement
confidential HIV reporting policies, these data indicate
that the impact of surveillance on those seeking HIV
testing will be small and should not hinder HIV
From the Division of HIV/AIDS Prevention, National
Center for HIV, STD, and TB Prevention, Centers for
Disease Control and Prevention, Atlanta, Ga.
The authors thank the following people for providing
information about their HIV counseling and testing and
HIV surveillance programs: Jeffrey Hanson, MPH, Maria
Ludwick, and Sue Troxler, Louisiana Department of Health
and Hospitals, New Orleans; Garry Goza, MS (Lansing),
Kris Judd (Lansing), Eve Mokotoff, MPH (Detroit), and
Liisa Randall (Lansing), Michigan Department of
Community Health; Tina Brubaker, MPH, and Steve Jackson,
Nebraska Department of Health and Human Services,
Lincoln; Bill Hill and Rick Reich, Nevada Department of
Human Resources, Carson City; Samuel Costa, MA, and
Helene Cross, MA, New Jersey Department of Health and
Senior Services, Trenton; Chris Freeman and Herb Stone,
MSSW, Tennessee Department of Health, Nashville.
Presented in part at the 125th Annual Meeting of the
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