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December 10, 1999 / 48(RR13);1-28
Guidelines for National Human Immunodeficiency Virus
Case Surveillance, Including Monitoring for Human
Immunodeficiency Virus Infection and Acquired
Immunodeficiency Syndrome
The
following CDC staff members prepared this report:
Patricia
L. Fleming, Ph.D., M.S.
John W. Ward, M.D.
Robert S. Janssen, M.D.
Kevin M. De Cock, M.D.
Division of HIV/AIDS Prevention-
Surveillance and Epidemiology
National Center for HIV, STD, and TB Prevention
Ronald
O. Valdiserri, M.D., M.P.H.
Helene D. Gayle, M.D., M.P.H.
Office of the Director
National Center for HIV, STD, and TB Prevention
in
collaboration with
Jeffrey
L. Jones, M.D., M.P.H.
J. Stan Lehman, M.P.H
Mary Lou Lindegren, M.D.
Allyn K. Nakashima, M.D.
Joseph M. Posid, M.P.H.
Patrick S. Sullivan, D.V.M., Ph.D.
Patricia A. Sweeney, M.P.H.
Pascale M. Wortley, M.D., M.P.H.
Division of HIV/AIDS Prevention
National Center for HIV, STD, and TB Prevention
Eva
M. Seiler, M.P.A
Office of the Director
National Center for HIV, STD, and TB Prevention
Harold
W. Jaffe, M.D.
Division of AIDS, STD, and TB Laboratory Research
National Center for Infectious Diseases
Summary
CDC
recommends that all states and territories conduct case
surveillance for human immunodeficiency virus (HIV)
infection as an extension of current acquired
immunodeficiency syndrome (AIDS) surveillance
activities. The expansion of national surveillance to
include both HIV infection and AIDS cases is a necessary
response to the impact of advances in antiretroviral
therapy, the implementation of new HIV treatment
guidelines, and the increased need for epidemiologic
data regarding persons at all stages of HIV disease.
Expanded surveillance will provide additional data about
HIV-infected populations to enhance local, state, and
federal efforts to prevent HIV transmission, improve
allocation of resources for treatment services, and
assist in evaluating the impact of public health
interventions. CDC will provide technical assistance to
all state and territorial health departments to continue
or establish HIV and AIDS case surveillance systems and
to evaluate the performance of their surveillance
programs. This report includes a revised case definition
for HIV infection in adults and children, recommended
program practices, and performance and security
standards for conducting HIV/AIDS surveillance by local,
state, and territorial health departments. The revised
surveillance case definition and associated
recommendations become effective January 1, 2000.
INTRODUCTION
AIDS
surveillance has been the cornerstone of national
efforts to monitor the spread of HIV infection in the
United States and to target HIV-prevention programs and
health-care services. Although AIDS is the end-stage of
the natural history of HIV infection, in the past,
monitoring AIDS-defining conditions provided
population-based data that reflected changes in the
incidence of HIV infection. However, recent advances in
HIV treatment have slowed the progression of HIV disease
for infected persons on treatment and contributed to a
decline in AIDS incidence. These advances in treatment
have diminished the ability of AIDS surveillance data to
represent trends in the incidence of HIV infection or
the impact of the epidemic on the health-care system. As
a consequence, the capacity of local, state, and federal
public health agencies to monitor the HIV epidemic has
been compromised (1-3).
In
response to these changes and following consultations
with multiple and diverse constituencies (including
representatives of public health, government, and
community organizations), CDC and the Council of State
and Territorial Epidemiologists (CSTE) have recommended
that all states and territories include surveillance for
HIV infection as an extension of their AIDS surveillance
activities (1,4). In this manner, the HIV/AIDS epidemic
can be tracked more accurately and appropriate
information about HIV infection and AIDS can be made
available to policymakers. CDC continues to support a
diverse set of epidemiologic methods to characterize
persons affected by the epidemic in the United States
(5-10). Although HIV/AIDS case surveillance represents
only one component among multiple necessary surveillance
strategies, this report focuses primarily on CDC's
recommendation to implement HIV case reporting
nationwide.
This
report provides a revised case definition for HIV
infection in adults and children, recommended program
practices, and performance and security standards for
conducting HIV/AIDS surveillance by local, state, and
territorial health departments. The case definition for
HIV infection was revised in consultation with CSTE and
includes the current AIDS surveillance criteria as a
component (11). The recommended program practices and
performance and security standards are based on a) the
established practices of AIDS and other public health
surveillance systems; b) reviews of state and local
surveillance programs, confidentiality statutes, and
security procedures; c) studies of the performance of
surveillance systems; d) ongoing evaluations of
determinants of test-seeking or test-avoidance in
relation to state policies and practices on HIV testing
and reporting; and e) discussions at a consultation held
by CDC and CSTE in May 1997. A draft of this report was
made available for public comment from December 10,
1998, to January 11, 1999, through a notice published in
the Federal Register (12).
BACKGROUND
History
of AIDS and HIV Case Surveillance
Since
the epidemic was first identified in the United States
in 1981, population-based AIDS surveillance (i.e.,
reporting of AIDS cases and their characteristics to
public health authorities for epidemiologic analysis)
has been used to track the progression of the HIV
epidemic from the initial case reports of opportunistic
illnesses caused by a then unknown agent in a few large
cities to the reporting of 711,344 AIDS cases nationwide
through June 30, 1999 (5,13-15). The AIDS reporting
criteria have been periodically revised to incorporate
new understanding of HIV disease and changes in medical
practice (16-19). In the absence of effective therapy
for HIV infection, AIDS surveillance data have reliably
detected changing patterns of HIV transmission and
reflected the effect of HIV-prevention programs on the
incidence of HIV infection and related illnesses in
specific populations (20-25). Because of these
attributes, AIDS surveillance data have been used as a
basis for allocating many federal resources for HIV
treatment and care services and as the epidemiologic
basis for planning local HIV-prevention services.
With
the advent of more effective therapy that slows the
progression of HIV disease, AIDS surveillance data no
longer reliably reflect trends in HIV transmission and
do not accurately represent the need for prevention and
care services (26,27). In 1996, national AIDS incidence
and AIDS deaths declined for the first time during the
HIV epidemic ( Figure 1-see below). These declines have been primarily attributed to
the early use of combination antiretroviral therapy,
which delays the progression to AIDS and death for
persons with HIV infection (1-3,9). Revised HIV
treatment guidelines recommend antiretroviral therapy
for many HIV-infected persons in whom AIDS-defining
conditions have not yet developed (28-30). In addition,
antiretroviral treatment of pregnant women and their
newborns has reduced perinatal HIV transmission and
resulted in dramatic declines in the incidence of
perinatally acquired AIDS (31,32) (Figure 2-see below). In response to these changes in HIV treatment
practices and the information needs of public health and
other policymakers, CDC and CSTE have recommended that
all states and territories extend their AIDS case
surveillance activities to include HIV case surveillance
and the reporting of HIV-exposed infants (1,4,33).
Since
1985, many states have implemented HIV case reporting as
part of their comprehensive HIV/AIDS surveillance
programs. As of November 1, 1999, a total of 34 states
and the Virgin Islands (VI) had implemented HIV case
surveillance using the same confidential system for
name-based case reporting for both HIV infection and
AIDS; two of these states conduct pediatric surveillance
only (5) (Figure 3-see below).
Areas that conduct integrated HIV/AIDS surveillance for
adults, adolescents, and children have reported 42% of
cumulative U.S. AIDS cases. In addition, four states
(Illinois, Maine, Maryland, and Massachusetts) and
Puerto Rico, representing 11% of cumulative AIDS cases,
are reporting cases of HIV infection using a coded
identifier rather than patient name. Washington has
implemented HIV reporting by patient name to enable
public health follow-up; after services and referrals
are offered, names are converted into codes. In most
other states, HIV case reporting is under consideration
or laws, rules, or regulations enabling HIV surveillance
are expected to be implemented during 2000.
In
contrast to AIDS case surveillance, HIV case
surveillance provides data to better characterize
populations in which HIV infection has been newly
diagnosed, including persons with evidence of recent HIV
infection such as adolescents and young adults
(13-24-year-olds) (34,35). Of the 52,690 HIV infections
diagnosed from January 1994 through June 1997 in 25
states that conducted name-based HIV surveillance
throughout this period, 14% of cases occurred in persons
aged 13-24 years. In comparison, of the 20,215 persons
in whom AIDS was diagnosed in these 25 states, only 3%
of cases occurred in persons aged 13-24 years. Thus,
AIDS case surveillance alone does not accurately reflect
the extent of the HIV epidemic among adolescents and
young adults. Compared with persons reported with AIDS,
those reported with HIV infection in these 25 states
were more likely to be women and from racial/ethnic
minorities (36) (table 1-see below). These patterns reflect the characteristics of
populations that were affected by the epidemic more
recently, but they might also reflect changes in testing
practices or behaviors (6,36,37). Compared with the
diagnosis of AIDS, which can be delayed among
HIV-infected persons receiving antiretroviral therapy,
the first diagnosis of HIV infection is not delayed by
treatment but is affected by testing behaviors and
targeted testing programs. In addition, in these 25
states as of June 30, 1999, the total number of persons
(159,083) who were reported as living with either a
diagnosis of HIV infection (90,699) or AIDS (68,384) was
133% greater than that represented by the number living
with AIDS alone (5). Therefore, these states have
documented that the combined prevalence of those living
with a diagnosis of HIV infection and those living with
AIDS provides a more realistic and useful estimate of
the resources needed for patient care and services than
does AIDS prevalence alone.
States
with confidential name-based HIV case surveillance
systems have used data on all perinatally exposed
children to document the sharp decline in perinatally
acquired HIV infection, the increase in the proportion
of infected pregnant women who have been tested for HIV
infection before delivery, and the high proportion of
HIV-infected pregnant women who accept zidovudine
therapy (31,38-44). These findings contribute to
HIV-prevention policy development. CSTE and the American
Academy of Pediatrics have recommended that all states
and territories conduct pediatric HIV surveillance that
includes all perinatally exposed infants to facilitate
follow-up to assess infection status and access to care
(11,31,33,40,45).
Persons
can choose to be tested for HIV in the following ways:
a) anonymously -- whereby identifying information,
including patient name and other locating information,
are not linked to the HIV test result (e.g., at
anonymous testing sites) and b) confidentially --
whereby the HIV test result is linked to identifying
information such as patient and provider names (e.g., at
medical clinics). In states that require HIV case
reporting, providers in confidential medical or testing
sites are required to report HIV-infected persons to
public health authorities. Not all persons infected with
HIV are tested, and of those who are, testing occurs at
different stages of their infection. Therefore, HIV
surveillance data provide a minimum estimate of the
number of infected persons and are most representative
of persons who have had HIV infection diagnosed in
medical clinics and other confidential diagnostic
settings. The data represent the characteristics of
persons who recognize their risk and seek confidential
testing, who are offered HIV testing (e.g., pregnant
women and clients at sexually transmitted disease [STD]
clinics), who are required to be tested (e.g., blood
donors and military recruits), and who are tested
because they present with symptoms of HIV-related
illnesses. CDC estimated that, in 1996, approximately
two thirds of all infected persons in the United States
had HIV infection diagnosed in such settings (46). HIV
surveillance data might not represent untested persons
or those who seek testing at anonymous test sites or
with home collection kits; such persons are not reported
to confidential HIV/AIDS surveillance systems. However,
the availability of anonymous testing is important in
promoting knowledge of HIV status among at-risk
populations and provides an opportunity for counseling
to reduce high-risk behaviors and voluntary referrals to
appropriate medical diagnosis and prevention services.
Despite
their current limitations, HIV and AIDS case
surveillance data together can provide a clearer picture
of the HIV epidemic than AIDS case surveillance data
alone. Therefore, CDC and CSTE continue to recommend
that all areas implement HIV case reporting as part of a
comprehensive strategy to monitor HIV infection and HIV
disease. The strategy should also include surveys of the
incidence and prevalence of HIV infection; AIDS case
surveillance; monitoring HIV-related mortality;
supplemental research and evaluation studies, including
behavioral surveillance; and statistical estimation of
the incidence and prevalence of infection and disease.
Considerations
in Implementing Nationwide HIV Case Surveillance
The
nationwide implementation of the 1993 expanded AIDS
surveillance case definition prompted renewed
discussions of the rationale and need for data
representing HIV-infected persons who did not meet the
AIDS-defining criteria. Because many states were
considering implementing HIV reporting, CDC held a
consultation in 1993 with public health and community
representatives to discuss relevant issues and concerns.
Community representatives' main concerns were that the
security and confidentiality standards of surveillance
programs might not be sufficient to prevent disclosures
of information and that many persons at risk for HIV
infection might therefore delay seeking HIV counseling
and testing because of these confidentiality concerns.
The consensus of the consultants was that few published
studies were of sufficient scientific quality to assess
these concerns. Therefore, the consultants identified
several areas that required additional research and
policy development before CDC and CSTE should consider
recommending further expansion of HIV surveillance
efforts. These areas included a) the impact of reporting
policies on testing behaviors and practices, including
the decreased availability of anonymous testing in some
states; b) the role of surveillance data in linking
reported persons to prevention and care programs; c) the
development of recommended standards for the security
and confidentiality of publicly held HIV/AIDS
surveillance data; and d) determining whether
alternatives to reporting of patient names would reduce
confidentiality risks while meeting the needs for
high-quality surveillance data.
In
response to the consultants' recommendations, CDC
initiated several research projects to a) assess the
effect of confidential name-based HIV surveillance on
persons' willingness to seek HIV testing and care; b)
review program practices and legal requirements for the
security and confidentiality of state and local HIV/AIDS
surveillance data; and c) evaluate the performance of
coded-identifier-based surveillance systems. Findings
from these projects and expert advice from participants
at numerous technical meetings and consultations held
during the intervening period have guided formulation of
the policies and practices recommended in this report.
The findings from these projects are summarized in the
following three subsections: HIV surveillance and
testing behavior, HIV surveillance using non-name-based
unique identifiers, and confidentiality of HIV
surveillance data.
HIV
Surveillance and Testing Behavior
Few
studies have characterized test- or care-seeking
behaviors in relation to state HIV reporting policies. A
1988 general population study of previous or planned use
of HIV testing services did not identify an association
of reporting policy with testing behavior (47). In
contrast, interviews of persons seeking anonymous
testing in 1989 documented that many would avoid testing
if a positive test resulted in name reporting or partner
notification (48). A review of the published literature
on HIV testing behaviors highlighted several limitations
and biases in previous studies (49), including small
numbers, lack of geographic and risk-group
representativeness, and analysis of intent to test
rather than of actual testing behavior. An additional
limitation of the available literature is that studies
published 5-10 years ago might not reflect actual
testing behaviors in the current treatment era.
Literature that highlights potential misuse of public
health surveillance data might have the unintended
effect of increasing test avoidance among some at-risk
persons (50). Examining knowledge of and perceptions
about testing and reporting, as well as actual testing
behavior, in the context of current treatment advances
and evolving HIV reporting policies, can address some of
the limitations of previous research.
To
determine the effect of changes in reporting policies on
actual testing behaviors among persons seeking testing
at publicly funded HIV counseling and testing sites, CDC
and six state health departments reviewed data routinely
collected from these sites to compare HIV testing
patterns during the 12 months before and the 12 months
after implementation of HIV case surveillance (51). In
these areas, the number of HIV tests increased in four
states and decreased in two states; the declines were
not statistically significant. All the analysis periods
(25-month periods during 1992-1996) antedated the
widespread beneficial effects of highly active
antiretroviral therapy. Slight variability in testing
trends was observed among racial/ethnic subgroups and
HIV-risk exposure categories; however, these data do not
suggest that, in these states, the policy of
implementing HIV case reporting adversely affected
test-seeking behaviors overall (52).
CDC
also supported studies by researchers at the University
of California at San Francisco and participating state
health departments to identify the most important
determinants of test seeking or test avoidance among
high-risk populations and to assess the impact of
changes in HIV testing and HIV reporting policies. Data
from these surveys of high-risk persons in nine selected
states about their perceptions and knowledge of HIV
testing and HIV reporting practices documented that few
respondents had knowledge of the HIV reporting policies
in their respective states (53,54). In surveys conducted
during 1995-1996, respondents reported high levels of
testing, with approximately three fourths reporting that
they had had an HIV test. The most commonly reported
factors (by nearly half of respondents) that might have
contributed to delays in seeking testing or not getting
tested were fear of having HIV infection diagnosed or
belief that they were not likely to be HIV infected.
"Reporting to the government" was a concern
that might have contributed to a delay in seeking HIV
testing for 11% of heterosexuals, 18% of injecting-drug
users, and 22% of men who have sex with men; less than
1%, 3%, and 2% of respondents in these risk groups,
respectively, indicated that this was their main
concern. Concern about name-based reporting of HIV
infections to the government was a factor for not
testing for HIV for 13% of heterosexuals, 18% of
injecting-drug users, and 28% of men who have sex with
men. As the main factor for not testing for HIV, concern
about name-based reporting to the government was
substantially lower in all risk groups (1% of
heterosexuals, 1% of injecting-drug users, and 4% of men
who have sex with men) (55). These findings suggest that
name-based reporting policies might deter a small
proportion of persons with high-risk sex or drug-using
behaviors from seeking testing and, therefore, support
the need for strict adherence to confidentiality
safeguards of public health testing and surveillance
data. In addition, the survey documented that the
availability of an anonymous testing option is
consistently associated with higher rates of intention
to test in the future. In this survey, high levels of
testing, together with high levels of test delay or
avoidance associated with reasons other than concern
about name reporting, suggest that addressing these
other concerns may have a greater effect on testing
behavior. For example, 59% of men who have sex with men
reported being "afraid to find out" as a
factor for not testing, and 27% reported it as the main
factor for not testing. In addition, 52% of men who have
sex with men reported "unlikely to have been
exposed" as a factor for not testing, and 17%
reported it as the main factor.
In
a companion survey of persons reported with AIDS in
eight of these same states, participants who had
recognized their HIV risk and sought testing at
anonymous testing sites reported entering care at an
earlier stage of HIV disease than persons who were first
tested in a confidential testing setting (e.g., STD
clinics, medical clinics, or hospitals), where persons
are frequently first tested when they become ill (56).
These data suggest that anonymous testing options are
important in promoting timely knowledge of HIV status
for some at-risk persons.
HIV
Surveillance Using Non-Name-Based Unique Identifiers
To
assess the feasibility of using alternatives to
confidential name-based methods for HIV surveillance,
several states implemented reporting of cases of HIV
infection or CD4 (a marker of immunosuppression in
HIV-infected persons) laboratory test results using
various numeric or alphanumeric codes. Other states
considered or tried to conduct case surveillance without
name identifiers by using codes designed for
nonsurveillance purposes (e.g., codes intended for use
in tracking patients in case-management systems) (57).
In May 1995, CDC convened a meeting at which these
states identified operational, technical, and scientific
challenges in conducting surveillance using coded
identifiers rather than patient names. The states
recommended that CDC evaluate additional coded
identifiers and assist them in documenting and
disseminating the results of their findings.
In
addition, CDC supported research to evaluate the
performance of a coded unique identifier (UI) in two
states that implemented a non-name-based HIV
case-reporting system while maintaining name-based
surveillance methods for AIDS (58). The study, conducted
by Maryland and Texas during 1994-1996 in collaboration
with CDC, documented nearly 50% incomplete reporting, in
part because the social security number necessary to
construct the identifier code was not uniformly
available in medical or laboratory records. In Maryland,
provider-maintained logs were needed to link the UI to
name-based medical records to obtain follow-up data
(e.g., on HIV risk/exposure). A more recent evaluation
conducted by the Maryland Department of Health and
Mental Hygiene (MDHMH) reported data from a publicly
funded counseling and testing site and documented a
higher level of completeness of HIV reporting (88%) than
the 50% documented in the previous study (58,59). MDHMH
reports that their code is unique to a given person and
that assignment of two different codes to the same
person is unlikely. That is, the probability that a
given code can distinguish one person from any other is
greater than 99% if all the elements of the code are
complete and accurate. No published evaluations have
assessed the probability of assigning the same code to
different persons, which could occur if elements of the
code were missing. In contrast to MDHMH's findings,
analogous evaluations in Texas, as well as studies that
used more diverse methods in Los Angeles and New Jersey,
failed to identify a code that performs as well as
name-based methods (58,60-67). On the basis of published
evaluations (58), Texas recently switched to name-based
HIV case surveillance.
In
addition to Maryland, three other states (Illinois,
Maine, and Massachusetts) and Puerto Rico recently
implemented HIV reporting using four different coded
identifiers. CDC will assist these states in
implementing their systems, establishing standardized
criteria for assessing the overall performance of their
systems, as well as assessing whether the required
standards are achieved. Additional evaluations will be
conducted by the respective state health departments, in
collaboration with CDC, to determine a) the ability of
coded identifiers to accurately track disease
progression from HIV infection to AIDS to death, b)
their utility for evaluating public health efforts to
eliminate perinatal HIV transmission, c) their
acceptability, and d) their usefulness in matching to
other databases (e.g., tuberculosis).
Confidentiality
of HIV Surveillance Data
A
1994 review of state confidentiality laws that protect
HIV surveillance data documented that all states and
many localities have legal safeguards for
confidentiality of government-held health data (68).
These laws provide greater protection than laws
protecting the confidentiality of information in health
records held by private health-care providers. Most
states have specific statutory protections for public
health data related to HIV infection and other STDs.
However, state legal protections vary, and CDC supports
additional efforts to strengthen privacy protections for
public health data. On the basis of input from expert
legal and public health consultants, the Model State
Public Health Privacy Act (69) was developed by an
independent contractor at the behest of CSTE. If enacted
by states, the provisions of the Model Act would ensure
the confidentiality of surveillance data, strengthen
statutory protections against disclosure, and preclude
the intended or unintended use of surveillance data for
non-public health purposes.
CDC
has reviewed state and local security policies and
procedures for HIV/AIDS surveillance data. Since 1981,
states have conducted AIDS surveillance, and few
breaches of security have resulted in the unauthorized
release of data (70,71). Because survival has improved
for HIV-infected persons, information about them might
be maintained in public health surveillance databases
for longer periods. This has resulted in increased
concerns about confidentiality of surveillance data
among public health and community groups (72).
Therefore, CDC has issued technical guidance for
security procedures that include enhanced
confidentiality and security safeguards as evaluation
criteria for federal funding of state HIV/AIDS
surveillance activities (73). The receipt of federal
surveillance funding depends on the recipient's ability
to ensure the physical security and confidentiality of
case reports. At the federal level, HIV/AIDS
surveillance data are protected by several federal
statutes, which ensure that CDC will not release
HIV/AIDS surveillance data for non-public health
purposes (e.g., for use in criminal, civil, or
administrative proceedings). Privacy is also ensured by
the removal of names and the encryption of data
transmitted to CDC. On the basis of the importance of
maintaining the confidentiality of persons in whom HIV
infection has been diagnosed by public or private
health-care providers, CDC has recommended additional
standards to enhance the security and confidentiality of
HIV and AIDS surveillance data (74,75).
GUIDELINES
FOR SURVEILLANCE OF HIV INFECTION AND AIDS
HIV
Surveillance Case Definition for Adults and Children
CDC,
in collaboration with CSTE, has established a new case
definition for HIV infection in adults and children that
includes revised surveillance criteria for HIV infection
and incorporates the surveillance criteria for AIDS
(17-19,76) (see appendix below).
HIV infection and AIDS case reports forwarded to CDC
should be based on this definition. For adults and
children aged greater than or equal to 18 months, the
HIV surveillance case definition includes laboratory and
clinical evidence specifically indicative of HIV
infection and severe HIV disease (AIDS). For children
aged less than 18 months (except for those who acquired
HIV infection other than by perinatal transmission), the
HIV surveillance case definition updates the definition
in the 1994 revised classification system. In addition,
the new case definition is based on recent data
regarding the sensitivity and specificity of HIV
diagnostic tests in infants and clinical guidelines for Pneumocystis
carinii pneumonia (PCP) prophylaxis for children
(19,77-88) and for use of antiretroviral agents for
pediatric HIV infection (30). The revised surveillance
case definitions for adults and children become
effective January 1, 2000.
HIV/AIDS
Case Surveillance Practices and Standards
CDC
and CSTE recommend that all states require reporting to
public health surveillance of all cases of perinatal HIV
exposure in infants, the earliest diagnosis of HIV
infection (exclusive of anonymous tests) and the
earliest diagnosis of AIDS in persons of all ages, and
deaths among these persons (4,33). Such reporting should
constitute the core minimum performance standard for
HIV/AIDS surveillance in all states and territories. CDC
provides federal funds and technical assistance to
states to establish and conduct active HIV/AIDS
surveillance programs. On the basis of feasibility,
needs, and resources, areas may be funded to implement
additional surveillance activities (e.g., supplemental
research and evaluation studies and serologic surveys),
but these approaches might not be necessary in all
areas. The following recommended practices update and
revise the CDC Guidelines for HIV/AIDS Surveillance released
in 1996 and updated in 1998 as a technical guide for
state and local HIV/AIDS surveillance programs
(34,73-75). Recommended practices represent CDC's
guidance for best public health practice based on
available scientific data. Programmatic standards set
minimum requirements for states to receive support from
CDC for HIV/AIDS surveillance activities.
Recommended
Surveillance Practices
- All
state and local programs should collect a standard
set of surveillance data for all cases that meet the
reporting criteria for HIV infection and AIDS. The
standard data set includes the a) patient
identifier, b) earliest date of diagnosis of HIV
infection, c) earliest date of diagnosis of an
AIDS-defining condition, d) demographic information
(e.g., date of birth, race/ethnicity, and sex) and
residence (i.e., city and state) at diagnosis of HIV
infection and of AIDS, e) HIV risk exposure, f)
facility of diagnosis, and g) date of death and
state of residence at death. In addition to this
information, the date of HIV diagnostic testing, the
results of these tests, and exposure to
antiretroviral treatment for reducing perinatal HIV
transmission should be collected for all infants
with perinatal exposures to HIV. Surveillance
information, without patient identifiers, should be
encrypted and forwarded to CDC through the HIV/AIDS
Reporting System (or equivalent) in accordance with
current practice. To address specific public health
information needs, local surveillance programs can
cross-match HIV and AIDS surveillance data with
other public health data (e.g., tuberculosis data)
and collect supplemental surveillance data on all or
a representative sample of cases. CDC will provide
technical assistance and recommend standardized
surveillance methods to assist in collecting
supplemental surveillance information.
- On
the basis of studies of coded identifier systems
conducted in at least eight states, published
evaluations of name-based and code-based
surveillance systems, and CDC's assessment of the
quality and reproducibility of the available data,
CDC has concluded that confidential name-based
HIV/AIDS surveillance systems are most likely to
meet the necessary performance standards
(36,58,60-67,89,90), as well as to serve the public
health purposes for which surveillance data are
required. Therefore, CDC advises that state and
local surveillance programs use the same
confidential name-based approach for HIV
surveillance as is currently used for AIDS
surveillance nationwide. However, CDC recognizes
that some states have adopted, and others may elect
to adopt, coded case identifiers for public health
reporting of HIV infection. CDC will provide
technical assistance to all state and local areas to
continue or establish HIV/AIDS surveillance systems
and to evaluate their surveillance programs using
standardized methods and criteria whether they use
name or coded identifiers.
- HIV
and AIDS surveillance should be used to identify
rare or previously unrecognized modes of HIV
transmission, unusual clinical or virologic
manifestations, and other cases of public health
importance. Providers are the most likely and timely
source of identifying unusual laboratory or clinical
cases. They are encouraged to promptly report
atypical cases to local, state, or territorial
public health officials for follow-up. CDC will
provide technical assistance to state and local
health departments conducting such investigations
and will revise public health recommendations based
on the findings, as appropriate.
- HIV
and AIDS case surveillance efforts should result in
collection of data from all private and public
sources of HIV-related testing and care services.
Laboratory-initiated surveillance methods should
identify all cases that meet the laboratory
reporting criteria for HIV infection and/or AIDS.
However, these methods will require follow-up with
the provider to verify the infection status or
clinical stage and obtain complete demographic and
exposure risk data. HIV-infected persons who are
initially tested anonymously are eligible to be
reported to CDC's HIV/AIDS surveillance database
only after they have had HIV infection diagnosed in
a confidential testing setting (e.g., by a
health-care provider) and have test results or
clinical conditions that meet the HIV and/or AIDS
reporting criteria.
- All
state and local surveillance programs should
regularly publish, in print or electronically,
aggregated HIV/AIDS surveillance data in a format
that facilitates use of these data by federal,
state, and local public health agencies,
HIV-prevention community planning groups and
care-planning councils, academic institutions,
providers and institutions that have reported cases,
community-based organizations, and the general
public. Presentation of surveillance data should be
consistent with established policies for data
release that preclude the direct or indirect
identification of a person with HIV infection or
AIDS. CDC will increase its efforts to coordinate
requests for HIV/AIDS surveillance data across
federal government agencies to use state/local
surveillance resources efficiently. CDC will also
develop specific guidelines for analyzing and
interpreting HIV/AIDS surveillance data.
- All
state and local surveillance programs should conduct
regular, ongoing assessments of the performance of
the surveillance system and redirect efforts and
resources to ensure timely reporting of complete,
representative, and accurate data. CDC will provide
technical assistance and recommend standardized
evaluation methods to assist states in achieving the
highest possible level of performance and to promote
comparability of data throughout the United States.
Minimum
Performance Standards
- To
provide accurate and timely data for monitoring
HIV/AIDS trends and ensuring a reliable measure of
the number of persons in need of HIV-related
prevention and care services, state and local
HIV/AIDS surveillance systems should use reporting
methods that provide case reporting that is complete
(greater than or equal to 85%) and timely (greater
than or equal to 66% of cases reported within 6
months of diagnosis). In addition, evaluation
studies should demonstrate that the approach used to
conduct surveillance (i.e., name or coded
identifier) must result in accurate case counts
(less than or equal to 5% duplicate case reports and
less than or equal to 5% incorrectly matched case
reports). Finally, at least 85% of reported cases or
a representative sample should have information
regarding risk for HIV infection after epidemiologic
follow-up is completed. All HIV/AIDS surveillance
systems should collect the recommended standard data
in a reliable and valid manner, allow matching to
other public health databases (e.g., death
registries) to benefit specific public health goals,
and allow identification and follow-up of individual
cases of public health importance.
- To
assess the quality of HIV and AIDS case surveillance
as specified in the performance standards, states
and local surveillance programs must conduct
periodic evaluation studies. CDC will recommend
several evaluation methods to enable states to
select methods best suited to their program needs
and resources. States should also evaluate the
representativeness of their HIV case reports by
monitoring the potential impact of HIV surveillance
on test-seeking patterns and behaviors and review
the extent to which surveillance data are being used
for planning, targeting, and evaluating
HIV-prevention programs and services. The goal of
these performance evaluations is to enhance the
quality and usefulness of surveillance data for
public health action. During the next several years
(i.e., 2000-2002), CDC will assist states in
transitioning to an integrated HIV/AIDS surveillance
system by evaluating current performance levels,
instituting revised program operations and policies
as necessary, and then reassessing performance.
Following this transition period, CDC will evaluate
and award proposals for federal funding of state and
local surveillance programs based on their capacity
to meet these performance standards. At that time,
CDC will require that recipients of federal funds
for HIV/AIDS case surveillance adopt surveillance
methods and practices that will enable them to
achieve the standards to ensure that federal funds
are awarded responsibly.
Recommended
Security and Confidentiality Practices
- State
and local programs should document their security
policies and procedures and ensure their
availability for periodic review.
- State
and local health departments should minimize storage
and retention of unnecessary or redundant paper or
electronic reports and should review their
data-retention policies consistent with CDC
technical guidelines (73-75). States should consider
and evaluate removing names from surveillance
records when they no longer serve the public health
purpose for which they were collected. Policies
should provide the flexibility to remove cases that
were reported in error or that are determined not to
be infected with HIV on follow-up. CDC will develop
guidance for confirming HIV-infection status as
testing and vaccine technologies evolve.
- State
and local health departments should also review
their confidentiality practices to determine whether
additional protections should be established (e.g.,
before implementation of HIV case surveillance).
States that plan to implement HIV case surveillance
should review their current confidentiality statutes
to determine whether they need to be strengthened.
The Model State Public Health Privacy Act (69)
should be considered by states in developing their
statutory protections of HIV/AIDS surveillance data.
Confidentiality laws should protect surveillance
data that are transmitted (in a secure and
confidential manner consistent with CDC's HIV/AIDS
surveillance program requirements) to other public
health programs as part of evaluation studies or for
follow-up of cases of special public health
importance. The penalties for violating privacy and
security should apply to all recipients of HIV/AIDS
case surveillance information.
- To
further enhance security and confidentiality of
data, states are encouraged to implement use of a
double-key encryption and decryption system, in
which identifying information encrypted by states
using the first key can only be decrypted for access
using the second key. CDC will develop this option
at the request of states that wish to reassure
HIV-infected persons that HIV and AIDS surveillance
data will be held confidentially and will be used
only for specified public health purposes. CDC will
hold the second key under an Assurance of
Confidentiality under Section 308(d) of the Public
Health Service Act, which governs how CDC uses or
releases surveillance data voluntarily shared with
CDC by the states. Under this assurance, CDC is
prohibited from providing that key to a state
planning to use HIV/AIDS surveillance data for
non-public health purposes.
Minimum
Security and Confidentiality Standards
The
security and confidentiality policies and procedures of
state and local surveillance programs should be
consistent with CDC standards for the security of
HIV/AIDS surveillance data (73,74). The minimum security
criteria were established following reviews of all state
and numerous local health department HIV/AIDS
surveillance programs. In general, the reviews
documented that health departments have achieved a high
level of security and that most state health departments
meet or exceed the minimum standards. Beginning in 2000,
CDC will require that recipients of federal funds for
HIV/AIDS surveillance establish the minimum security
standards and include their security policy in
applications for surveillance funds (73,74). Examples of
these standards include the following:
- Electronic
HIV/AIDS surveillance data should be protected by
computer encryption during data transfer. States
should continue the established practice of not
including personal identifying information in
HIV/AIDS surveillance data forwarded to CDC.
- HIV
and AIDS surveillance records should be located in a
physically secured area and should be protected by
coded passwords and computer encryption.
- Access
to the HIV/AIDS surveillance registry should be
restricted to a minimum number of authorized
surveillance staff, who are designated by a
responsible authorizing official, have been trained
in confidentiality procedures, and are aware of
penalties for unauthorized disclosure of
surveillance information.
- Public
health programs that receive HIV/AIDS information
from matching of public health databases should have
security and confidentiality protections and
penalties for unauthorized disclosure equivalent to
those for HIV/AIDS surveillance data and personnel.
- Use
of HIV/AIDS surveillance data for research purposes
should be approved by appropriate institutional
review boards, and persons conducting the research
must sign confidentiality statements.
- HIV
and AIDS surveillance data made available for
epidemiologic analyses must not include names or
other identifying information. State and local data
release policies should ensure that the release of
data for statistical purposes does not result in the
direct or indirect identification of persons
reported with HIV infection and AIDS.
- In
the rare instance of a possible security breach of
HIV/AIDS surveillance data, state and local health
departments should promptly investigate and report
confirmed breaches to CDC to enable CDC to provide
technical assistance to state and local health
departments, develop recommendations for
improvements in security measures, and provide
oversight in monitoring changes in program
practices.
Relation
to HIV-Prevention and HIV-Care Programs: Recommended
Practices
At
the federal level, the primary function of HIV/AIDS
surveillance is collecting accurate and timely
epidemiologic data for public health planning and
policy. Consequently, CDC is authorized to provide
federal funds to states through surveillance cooperative
agreements, both to achieve the goals of the national
surveillance program and to assist states in developing
their surveillance programs in accordance with state and
local laws and practices. Federal funds authorized for
HIV/AIDS surveillance are not provided to states for
developing or providing prevention or treatment
case-management services; funds for such services are
provided by CDC and other federal agencies under
separate authorizations.
Whether
and how states establish a link between individual
case-patients reported to their HIV/AIDS surveillance
programs and other health department programs and
services for HIV prevention and treatment is within the
purview of the states. However, in considering or
establishing such linkages, CDC recommends the
following:
- The
implementation of HIV case surveillance should not
interfere with HIV- prevention programs, including
those that offer anonymous HIV counseling and
testing services. Unless prohibited by state law or
regulation, as a condition of federal funding for
HIV prevention under a separate authorization, CDC
requires that states and local areas provide
anonymous HIV counseling and testing services. CDC
strongly recommends that states which prohibit
anonymous HIV testing change this practice, given
the overriding public health objective of
encouraging persons to become aware of their HIV
serologic status. CDC does not view the availability
of publicly funded anonymous counseling and HIV
testing as incompatible with the ability to conduct
HIV case surveillance in the population.
- HIV
testing services should be offered for participation
on a voluntary basis and preceded by informed
consent in accordance with local laws (91).
- Both
public and private providers should refer persons in
whom HIV infection has been diagnosed to programs
that provide HIV care, treatment, and comprehensive
prevention case-management services.
- Provider-based
referrals of patients to prevention and care
services should enable a timely, effective, and
efficient means of ensuring that persons in whom HIV
infection has been diagnosed receive needed
services.
- States
should consult with providers, prevention- and
care-planning bodies, and public health
professionals in developing the policies and
practices necessary to effect these linkages; should
require that recipients of HIV/AIDS surveillance
information be subject to the same penalties for
unauthorized disclosure as HIV/AIDS surveillance
personnel; and should evaluate the effectiveness of
this public health approach. Such an evaluation
should ensure that the public health objectives of
such linkages are achieved without unnecessarily
increasing security and confidentiality risks to
surveillance data or decreasing the acceptability of
surveillance programs to health-care providers and
affected communities. Providers and affected
communities, including HIV-prevention community
planning groups, should participate with health
departments in planning and implementing
surveillance strategies, as well as programs and
services.
COMMENTARY
Surveillance
Case Definition for HIV Infection and AIDS
The
revised case definition for HIV infection in adults and
children integrates reporting criteria for HIV infection
and AIDS in a single case definition and incorporates
new laboratory tests in the laboratory criteria for HIV
case reporting. The 2000 case definition for HIV
infection includes HIV nucleic acid (DNA or RNA)
detection tests that were not commercially available
when the AIDS case definition was revised in 1993. The
revised case definition for HIV infection also permits
states to report cases to CDC based on the result of any
test licensed for diagnosing HIV infection in the United
States. Although the reporting criteria generally
reflect the recommendations for diagnosing HIV
infection, the HIV reporting criteria are for public
health surveillance and are not designed for making a
diagnosis for an individual patient. The laboratory
criteria include the serologic HIV tests described in
the clinical standards for diagnosing HIV infection
(92-95).
The
pediatric HIV reporting criteria include criteria for
monitoring all children with perinatal exposures to HIV
and reflect recent advances in diagnostic approaches
that permit the diagnosis of HIV infection during the
first months of life. With HIV nucleic acid detection
tests, HIV infection can be detected in nearly all
infants aged greater than or equal to 1 month. The
timing of the HIV serologic and HIV nucleic acid
detection tests and the number of HIV nucleic acid
detection tests in the definitive and presumptive
criteria for HIV infection are based on the recommended
practices for diagnosing infection in children aged less
than 18 months and on evaluations of the performance of
these tests for children in this age group (30,77-88).
The
clinical criteria in the case definition for HIV
infection are included to ensure the complete reporting
of cases with documented evidence of HIV infection or
conditions meeting the AIDS case definition. The
AIDS-defining conditions are included as part of the
single case definition for HIV infection. In adults and
adolescents aged greater than or equal to 13 years,
criteria for presumptive and definitive AIDS-defining
conditions have not been revised since 1993 and continue
to include the laboratory markers of severe HIV-related
immunosuppression and the opportunistic illnesses
indicative of severe HIV disease, which greatly increase
mortality risks.
Effect
of National HIV Case Surveillance on Reporting Trends
Changes
in the HIV reporting criteria will have little effect on
reporting trends in states already conducting HIV case
surveillance. However, the number of cases of HIV
infection reported nationally will increase primarily
because of implementation of HIV surveillance by the
remaining states and local areas. Many of the states
that will implement HIV case surveillance in the future
have high AIDS incidence rates. Similar to the effect on
AIDS surveillance trends after the implementation of the
revised reporting criteria in 1993, the initiation of
HIV surveillance by additional states might result in a
sudden and large increase in HIV case reports (96). On
the basis of CDC's estimate that approximately 220,000
HIV-infected persons without AIDS-defining conditions
had had HIV infection diagnosed in confidential testing
settings and resided in states that were not conducting
HIV case surveillance at the end of 1996 (46), the
possibility exists that this number of persons could be
reported with HIV infection from these states in 2000.
However, reporting of prevalent HIV infections is more
likely to be spread over several years, and the annual
increases will most likely be more modest. Initially,
most case reports will represent persons whose HIV
infection was diagnosed before the implementation of HIV
surveillance. As the reporting of prevalent cases of HIV
infection reaches full implementation nationwide, the
number of HIV case reports will decrease, and case
reports will increasingly represent persons with recent
diagnoses of HIV infection.
To
facilitate interpretation of HIV surveillance data and
given that CDC strongly promotes continued availability
of anonymous testing options, evaluations of HIV/AIDS
surveillance systems will include assessments of the
representativeness of HIV case surveillance data. These
assessments will include special surveys to evaluate the
delays between HIV testing and entry to care. In
addition, these evaluations will be useful in
determining the effectiveness of program efforts to
refer persons into care services after the diagnosis of
HIV infection in anonymous testing settings.
AIDS
cases have declined nationwide; however, because AIDS
surveillance trends are affected by the incidence of HIV
infection, as well as the effect of treatment on the
progression of HIV disease, future AIDS trends cannot be
predicted. AIDS surveillance will continue to be
important in evaluating access to care for different
populations and in identifying changes in trends that
might signal a decrease in the effectiveness of
treatment. The long-term benefits of antiretroviral
therapy and antimicrobial prophylaxis for AIDS-related
illnesses continue to be defined. In addition, various
factors (e.g., access, adherence, treatment costs, and
viral resistance) will influence the use and
effectiveness of these therapies and their effects on
AIDS incidence and mortality trends (97-99).
Because
trends in new diagnoses of HIV infection are affected by
when in the course of disease a person seeks or is
offered HIV testing, such trends do not reflect the
incidence of HIV infection in the population. In
addition, because all HIV-infected persons in the
population might not have had the infection diagnosed,
these data do not represent total HIV prevalence in the
population. Currently, interpretation of these data is
complicated by several factors. First, persons might
have HIV infection diagnosed and later during the same
calendar year have AIDS diagnosed, which can complicate
presentation of the data. Second, delays in reporting
cases of HIV infection tend to be shorter than for AIDS
cases, necessitating development of stage-specific
statistical adjustments. Third, methods of imputation of
exposure risk data for AIDS cases have been developed
based on historical patterns of reclassification after
investigation, but comparable methods for cases of HIV
infection are only recently available at the national
level. Finally, whether a trend in the number of new HIV
diagnoses is stable, increasing, or decreasing might
reflect current or historical HIV transmission patterns,
changes in testing behaviors, and/or stage of the
epidemic in the local geographic area.
Overall,
in the United States, the incidence of HIV infection
peaked approximately 15 years ago, and the annual number
of HIV infections has been stable at approximately
40,000 since 1992, when CDC estimated the prevalence of
HIV infection in the range of 650,000-900,000 infected
persons (100,101). Based on HIV and AIDS case
surveillance data, CDC estimates that the prevalence of
HIV infection at the end of 1998 was in the range of
800,000-900,000 infected persons. Of these persons,
approximately 625,000 (range: 575,000-675,000) had had
HIV infection or AIDS diagnosed (CDC, unpublished data,
1999). Because the annual number of new infections in
recent years is relatively lower than during the peak
incidence years, over time the remaining untested or
anonymously tested infected persons will have HIV
infection diagnosed through test-seeking, targeted
testing, entry to care, or progression of disease to
AIDS. Ultimately, the number of new diagnoses of HIV
infection will decrease each year as they increasingly
represent the smaller pool of more recently infected
persons. Thus, in states that have been conducting HIV
case reporting for several years, the number of new
diagnoses of HIV infection is expected to decrease, then
stabilize at a lower rate if the number of new
infections remains stable.
For
states that newly implement HIV reporting, a large bolus
of reported prevalent infections is expected to occur,
followed by a decline in the annual number of new cases
until the number stabilizes at a lower level. Recently,
since the impact of highly active antiretroviral therapy
on survival, the estimated number of new infections each
year probably exceeds the number of deaths, and the
prevalence of HIV infection might be increasing by a
small proportion of total prevalence. Thus, during the
transition period to nationwide HIV-infection reporting,
measures of the combined prevalence of HIV infection
diagnoses and AIDS diagnoses will be most useful in
projecting the need for resources for care and
prevention. Trends in the numbers of new cases reported
will not provide immediate insights into the dynamics of
the epidemic because prevalent case reports represent a
mixture of new and old HIV infections. Within the next
several years, however, all states will be able to
characterize new diagnoses of HIV infection or a
representative sample by demographic and clinical
characteristics that will provide meaningful insights
into actual HIV transmission patterns and will have
well-characterized the health and service needs of the
population of prevalent HIV-infected persons. CDC will
develop analysis profiles, statistical adjustments for
reporting delays and imputation of risk data, and
recommendations for data presentation to assist states
in analyzing and interpreting their HIV/AIDS
surveillance data during this transition period.
HIV/AIDS
Surveillance Practices
Laboratories
will be an increasingly important source of information
from which to initiate reporting. HIV infection is
frequently diagnosed in the outpatient clinical setting,
and laboratory-initiated reporting will be particularly
useful in identifying outpatient sources of HIV testing
(89) although contact with individual providers is
necessary to complete the reporting process. The routine
collection of HIV and CD4 test data from laboratories
and managed-care organizations promotes completeness of
reporting and may increase the simplicity and efficiency
of initial case-finding activities by local surveillance
programs. Nonetheless, repeated testing of the same
persons results in multiple reports and necessitates
labor-intensive follow-up to eliminate duplicates. CDC
is increasing its efforts to promote standards in
laboratory reporting and to facilitate the transfer of
data from public health and commercial laboratories to
health departments.
Performance
criteria for HIV and AIDS surveillance are necessary to
ensure that surveillance data are of sufficient quality
to target prevention and care resources and to detect
emerging trends in the HIV epidemic. Evaluations of HIV
and AIDS surveillance programs have documented that
areas should be able to meet these performance criteria
(5,36,61-67,89,90). According to these evaluations of
name-based surveillance systems, the completeness of HIV
surveillance (from 79% to approximately 95%) and AIDS
surveillance (from 85% to approximately 95%) is high,
and reporting is timely with nearly one half of AIDS
cases and three quarters of cases of HIV infection
reported to the national HIV/AIDS reporting system
within 3 months of diagnosis (5). CDC estimates that the
duplication rate of cases of HIV infection reported from
different states to the national surveillance database
was approximately 2%; for AIDS cases, the rate was
approximately 3% (5,36). The performance criteria also
reflect the need for public health surveillance systems
to identify and follow-up on cases of public health
importance.
On
the basis of current evaluation studies of
non-name-based case identifiers and the current
infrastructure of state and local health departments,
name-based methods for collecting and reporting public
health data provide the most feasible, simple, and
reliable means for ensuring timely, accurate, and
complete reporting of persons in whom HIV infection or
AIDS has been diagnosed. Confidential name-based
reporting also facilitates follow-up of perinatally
exposed infants to determine their infection status and
of persons reported with HIV infection to determine
progression to AIDS and vital status (36,42). A
name-based patient identifier allows providers to report
cases directly from their name-based medical records,
facilitates elimination of duplicate case reports,
enables cross-matching of HIV and AIDS data with other
name-based public health data (e.g., tuberculosis
surveillance), permits follow-up with providers to
collect information regarding risk for HIV infection and
other data of public health importance. Through
follow-up with providers, the HIV/AIDS surveillance
system has provided an effective means to identify rare
or unusual modes of HIV transmission and infection with
rare strains of HIV and to improve prevention of
HIV-related opportunistic illnesses (102-106). CDC will
assist states in monitoring the impact of changing
medical interventions, epidemiology, and HIV case
surveillance policies on test- and care-seeking
behaviors.
Security
and Confidentiality of HIV and AIDS Surveillance
The
revision of the case definition for HIV infection
provides an opportunity to review and strengthen state
and local confidentiality laws and regulations. Although
state HIV/AIDS surveillance confidentiality laws and
regulations adequately protect privacy compared with the
statutory protections of other health-care data, state
statutes differ in the degree of privacy protections
afforded health information and the criteria for
permissible disclosures of personal information. Most
state statutes describe some permissible disclosures of
public health information. To help ensure uniform
confidentiality protections, the Georgetown University
Law Center developed the Model State Public Health
Privacy Act (69). Public health, legislative, legal,
and community advocacy representatives provided expert
consultation. The model legislative language protects
confidential, identifiable information held by state and
local public health departments against unauthorized and
inappropriate non-public health uses but still allows
public health officials to use surveillance information
to accomplish the public health objectives defined by
the law (69). CDC recommends that states planning to
implement HIV case surveillance should consider adopting
the model legislation, if necessary, to strengthen the
current level of protection of public health data.
Although
HIV/AIDS surveillance systems have exemplary records of
security and confidentiality, it is essential for all
programs to identify ways to strengthen data protection
because of a perceived greater sensitivity of HIV case
surveillance compared with that of AIDS case
surveillance alone (71). Providing accurate public
education and factual media messages to inform
vulnerable populations, as well as promoting testing
programs that facilitate referrals into treatment and
prevention services, will be important to ensure that
test seeking and acceptance are not adversely affected
as additional states implement HIV case reporting. The
revised security standards (74) promote enhancements to
further reduce any potential for disclosure of sensitive
surveillance data. CDC continues to conduct evaluations
of methods to further enhance data security, including
the use of coding and encryption of data collected in
the HIV/AIDS reporting system.
HIV
Prevention and Care
CDC
has published guidelines concerning the provision and
targeting of HIV counseling and testing services
(29,41,107-111) and provides support for most public
sources of HIV testing. The availability of anonymous
HIV testing services might be particularly important for
persons who delay seeking testing because of a concern
that others might learn of their serologic status (55).
Studies have documented that the availability of
anonymous HIV testing is associated with increased
numbers of persons seeking testing services (112-115).
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