|
Policies for the confidential reporting by name of persons with
acquired immunodeficiency syndrome (AIDS) to health departments
exist in all states.
The ability to monitor trends in the epidemic due to the human
immunodeficiency virus (HIV) has been based on these AIDS case
reports. In contrast, confidential reporting by name of HIV-infected
adults and adolescents (aged >13 years) who do not meet the
criteria for AIDS (HIV reporting)[1] has been implemented less
completely; by January 1998, only 28 states required physicians and
other health care providers, including clinicians, laboratories, and
institutions (eg, hospitals, clinics), to report these cases.Until
recently, AIDS case reporting met most of the information needs of
monitoring and characterizing the HIV epidemic. Because of changes
in the epidemic, most notably those related to new therapies, AIDS
case reports no longer provide adequate information, and HIV
reporting will become increasingly important. One barrier to the
adoption of HIV reporting has been the concern that such policies
might cause some individuals to avoid testing or medical care. These
concerns have been based on surveys
of at-risk populations. Although the populations surveyed were at
high risk for HIV (eg, men who have sex with men [MSM]), they were
limited by small numbers and narrow geographic coverage. Most
surveys asked people about their intent to test without verifying
testing behaviors after the implementation of HIV reporting.
Large-scale, publicly funded HIV counseling and testing (CT)
programs have been in place in all states since 1985. These programs
were initially implemented to provide sites for HIV testing other
than blood banks and to offer anonymous or confidential HIV CT
services to anyone seeking a test. Approximately 2.5 million HIV
tests are furnished by the CT programs each year.
In areas where HIV reporting legislation was introduced after
implementation of CT programs, the data collected by these programs
provide a unique opportunity to observe the effect of HIV reporting
policies on testing. In this study, we used CT data to compare the
changes in use of HIV testing services before and after HIV
reporting was implemented.
METHODS
The Centers for Disease Control and Prevention (CDC) has funded
65 project areas in state, city, or territorial health departments
for HIV CT services since 1985.[13-15] Since 1990, most project
areas have sent to CDC data on individual tests performed. For each
test performed, information was collected on month and year of test;
sex, race or ethnicity, and HIV risk exposure group (MSM, injection
drug use, sex with a person infected with HIV or at risk for HIV) of
the person tested; type of testing site (stand-alone counseling and
testing site, sexually transmitted disease clinic, drug treatment
center, family planning clinic, community health center, prison or
jail, other); test result; and type of test (anonymous vs
confidential), added after 1992.
In 5 states, HIV reporting was implemented after CT data
collection was in place. In Louisiana, HIV reporting was implemented
in February 1993; in Nebraska, September 1995; in Nevada, February
1992; in New Jersey, October 1991; and in Tennessee, January 1992.
In Michigan, HIV reporting was required by regulation beginning in
1988. However, the health department did not actively solicit HIV
case reports from physicians and other providers, including
clinicians, laboratories, and institutions (eg, hospitals, clinics),
until April 1992. Therefore, for Michigan this date was taken as the
date on which HIV name reporting was implemented. In these 6 states,
the number of HIV tests, the number of positive HIV test results,
and the distribution of these tests by sex, race or ethnicity, type
of testing site, and risk exposure group were compared for the 12
months before and the 12 months after HIV reporting was introduced;
data for the month when HIV name reporting was introduced were
excluded. We excluded CT sites reporting fewer than 50 tests to the
client record system during the 25-month period of evaluation.
Because of policy changes, changes in funding, or other program
issues, sites may be added or eliminated from a state's CT program.
To minimize the effect of changes in sites, we excluded sites that
reported no tests for any month during the 25-month study period.
Data on type of test were available for Louisiana and Nebraska
and the percentages of anonymous and confidential tests before and
after HIV name reporting were assessed by sex, race or ethnicity,
and risk exposure group for these states.
To account for the variations in autocorrelated data (ie, the
underlying statistical distribution of repeated measures over time
in the same sites), we used a Poisson log-linear model. For this
model, the number of tests was the response variable used to compare
the months before and the months after implementation of HIV
reporting. Within the model, the generalized estimating equations
method was incorporated to fit a correlated response model.
The trends in the number of tests before and after HIV reporting
were also compared by using the model. The 3 variables in the model
comparing trends were time (before vs after HIV reporting), trend
(linear trend over 12 months), and time by trend interaction (trend
same or different before vs after HIV reporting).
The data used in the analysis were collected to monitor service
provision, not for use in a research study; for example, no
population sampling was performed. In addition, because of the large
numbers of tests performed in most areas, small percentage changes
may result in statistically significant differences that are not
practically meaningful. Therefore, we present stratified tables as
comparisons of numbers of tests and percentage changes without
further statistical description.
HIV/AIDS surveillance coordinators and HIV CT program
coordinators in each of the 6 study areas were telephoned to obtain
qualitative information about the methods used to inform the general
public and health care providers such as physicians and other
clinicians, laboratories, and institutions about HIV reporting,
local HIV CT program characteristics, and occurrences (eg, media
events, changes in program funding) that may have influenced
counseling and testing trends at the time HIV name reporting was
implemented.
RESULTS
During the 25-month period before and after the implementation of
HIV reporting, the total numbers of HIV tests provided through the
states in the study were as follows: Louisiana, 86 734 tests at 50
sites; Michigan, 138 802 tests at 53 sites; Nebraska, 9749 tests at
8 sites; Nevada, 25 002 tests at 3 sites; New Jersey, 141 946 tests
at 84 sites; and Tennessee, 56 721 tests at 29 sites. These tests
represented 63% of HIV tests performed in publicly funded CT sites
in Louisiana during this period, 95% in Michigan, 77% in Nebraska,
88% in Nevada, 84% in New Jersey, and 79% in Tennessee. |
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).
COMMENT
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.[3] 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,[10] 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 reporting policy. 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[8,11] or persons seeking anonymous testing[12]) 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[25] 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[19] 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,[4] 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.[3] 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
prevention efforts.
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 American
Public Health Association, Indianapolis, Ind, November 9-13, 1997.
Reprints: Allyn K. Nakashima, MD, Centers for Disease Control and
Prevention, 1600 Clifton Rd, MS E-47, Atlanta, GA 30333
References
Centers for Disease Control and Prevention. 1993 Revised
classification system for HIV infection and expanded surveillance
case definition for AIDS among adolescents and adults. MMWR
Morb Mortal Wkly Rep. 1992;41(No. RR-17):1-19.
Centers for Disease Control and Prevention. HIV/AIDS
Surveillance Report. Atlanta, Ga: Centers for Disease Control
and Prevention; 1997:32. Report 9.
Gostin LO, Ward JW, Baker AC. National HIV case reporting for
the United States—a defining moment in the history of the epidemic.
N Engl J Med. 1997;337:1162-1167.
Centers for Disease Control and Prevention. Update: trends in
AIDS incidence—United States, 1996. MMWR Morb Mortal Wkly Rep.
1997;46:861-867.
Forbes A. Naming names—mandatory name-based HIV reporting:
impact and alternatives. AIDS Policy Law. May 1996:1-4.
Should HIV Test Results Be Reportable? A Discussion of the
Key Policy Questions. Washington, DC: AIDS Action Foundation;
1993.
Fehrs LJ, Fleming D, Foster LR, et al. Trial of anonymous
versus confidential human immunodeficiency virus testing. Lancet.
1988;2:379-382.
Kegeles SM, Coates TJ, Lo B, Catania JA. Mandatory reporting
of HIV testing would deter men from being tested. JAMA.
1989;261:1275-1276.
Fordyce JE, Sambula S, Stoneburner R. Mandatory reporting of
human immunodeficiency virus testing would deter blacks and
Hispanics from being tested. JAMA. 1989;262:349.
Kegeles SM, Catania JA, Coates TJ, Pollack LM, Lo B. Many
people who seek anonymous HIV-antibody testing would avoid it under
other circumstances. AIDS. 1990;4:585-587.
Myers T, Orr KW, Locker D, Jackson EA. Factors affecting gay
and bisexual men's decisions and intentions to seek HIV testing.
Am J Public Health. 1993;83:701-704.
Peterson DR, Senak MS, Etzel M, Reed GM. An assessment of
the impact of mandatory name reporting on HIV testing and treatment.
Abstract presented at: XI International Conference on AIDS; July 11,
1996; Vancouver, British Columbia.
Centers for Disease Control and Prevention. HIV
Counseling, Testing, and Referral Standards and Guidelines.
Atlanta, Ga: Centers for Disease Control and Prevention; 1994.
Centers for Disease Control and Prevention. HIV
Counseling and Testing in Publicly Funded Sites: 1996 Annual Report.
Atlanta, Ga: Centers for Disease Control and Prevention; 1998.
Weber JT, Frey RL, Horsley R, Gwinn ML. Publicly funded HIV
counseling and testing in the United States, 1992-1995. AIDS Educ
Prev. 1997;9(suppl B):79-91.
SAS Institute Inc. SAS/STAT Software: Changes and
Enhancements for Release 6.12. Cary, NC: SAS Institute Inc;
1996:36-41.
Diggle PJ, Liang KY, Zeger SL. Analysis of Longitudinal
Data. Oxford, England: Clarendon Press; 1994.
Thall PF, Vail SC. Some covariance models for longitudinal
count data with overdispersion. Biometrics. 1990;46:657-671.
Centers for Disease Control and Prevention. Sexual risk
behaviors of STD clinic patients before and after Earvin "Magic"
Johnson's HIV-infection announcement—Maryland, 1991-1992. MMWR
Morb Mortal Wkly Rep. 1993;42:45-48.
American Civil Liberties Union. HIV Surveillance and Name
Reporting: A Public Health Case for Protecting Civil Liberties.
Washington, DC: American Civil Liberties Union; 1997.
Burris S. Driving the epidemic underground? a new look at
law and the social risk of HIV testing. AIDS Public Policy J.
1997;12:66-78.
Johnson WD, Francisco SS, Jackson KL. The impact of
mandatory reporting of HIV seropositive persons in South Carolina.
Abstract presented at: IV International Conference on AIDS; June 14,
1988; Stockholm, Sweden.
Lehman JS, Hecht FM, Fleming PL, et al. HIV testing behavior
among at-risk populations: why do persons seek, defer, or avoid
getting tested in the United States? Abstract presented at: XII
International Conference on AIDS; July 2, 1998; Geneva, Switzerland.
Hecht FM, Colman S, Lehman JS, et al. Named reporting of
HIV: attitudes and knowledge of those at risk [abstract]. J Gen
Intern Med. 1997;12(suppl 1):108.
Philips KA. The relationship of 1988 state HIV testing
policies to previous and planned voluntary use of HIV testing. J
Acquir Immune Defic Syndr. 1994;7:403-409.
Francis DP, Singleton JA. Reporting of HIV-1 infection
through provision of essential services. J Acquir Immune Defic
Syndr. 1993;6:285-286.
Hirano D, Gellert GA, Fleming K, Boyd D, Englender SJ, Hawks
H. Anonymous HIV testing: the impact of availability on demand in
Arizona. Am J Public Health. 1994;84:2008-2010.
Hoxworth T, Hoffman R, Cohn D, Davidson A. Anonymous HIV
testing: does it attract clients who would not seek confidential
testing? AIDS Public Policy J. 1994;9:182-189.
Hertz-Picciotto I, Lee LW, Hoyo C. HIV test-seeking before
and after the restriction of anonymous testing in North Carolina.
Am J Public Health. 1996;86:1446-1450.
Irwin KL, Valdiserri RO, Holmberg SD. The acceptability of
voluntary HIV antibody testing in the United States: a decade of
lessons learned. AIDS. 1996;10:1707-1717.
Kassler WJ, Meriwether RA, Klimko TB, Peterman TA, Zaidi A.
Eliminating access to anonymous HIV antibody testing in North
Carolina: effects on HIV testing and partner notification. J
Acquir Immune Defic Syndr Hum Retrovirol. 1997;14:281-289.
Council of State and Territorial Epidemiologists. Position
statement: national HIV surveillance: addition to the National
Public Health Surveillance System. Presented at: Annual Meeting of
Council of State and Territorial Epidemiologists; June 16, 1997;
Saratoga Springs, NY.
|
