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:
http://www.hiv1.com/Guidelines.htm
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. 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). 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. 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). 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) (Appendix).
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).
Anonymous HIV testing services are a required element of federally
supported prevention programs unless prohibited by state law or
regulation. Currently, 39 states, Puerto Rico, and the District of
Columbia provide anonymous HIV testing services.
CDC advises
that the decision to refer persons reported to the surveillance
system to prevention and care services (e.g., partner counseling and
referral services [PCRS]) be made at the local level. PCRS programs
provide HIV counseling and testing to persons who might be unaware
of HIV risk exposures, and these services are a required component
of federally sponsored HIV-prevention programs (116,117). The
provision of such services to persons in whom HIV infection or AIDS
has been diagnosed, especially those who receive services in
publicly funded testing and clinic settings, is conducted
successfully by states regardless of whether they have implemented
HIV reporting (118). Referrals from surveillance to other health
department services, when they occur, should be established in a
manner that ensures both the quality of the surveillance data and
the security of the surveillance system, as well as the quality,
confidentiality, and voluntary nature of HIV-prevention services
(119). At the federal level, the primary function of HIV/AIDS
surveillance remains the provision of accurate epidemiologic data
for public health information, planning, and evaluation.
Persons in
whom HIV infection has been diagnosed at either confidential or
anonymous test sites should be promptly referred to facilities that
provide confidential HIV care. Recent studies have documented
disparities in ensuring timely testing and access to care by
demographic, socioeconomic, and other factors (120,121). Although
not directly responsible for the delivery of medical care, CDC
provides federal direction for state and local programs that
facilitate referral of HIV-infected persons from counseling and
testing centers and health education/risk-reduction programs to HIV
care facilities. CDC has developed guidelines to strengthen the
system of referrals between HIV testing sites and care programs, in
part by increasing coordination with the Health Resources and
Services Administration and the Ryan White CARE Act grantees (122).
To provide further guidance, CDC has participated in developing
model contract language for Medicaid programs that serve persons
with HIV infection to ensure cooperation with public health
authorities in case reporting and follow-up. A well-developed and
well-implemented HIV and AIDS case surveillance system is integral
to public health efforts to identify disparities, target programs
and resources to vulnerable populations, and assess the impact of
these programs in reducing infection, disease, and premature death.
CDC is
undertaking a national effort to further reduce perinatal HIV
transmission in the United States. This effort will incorporate HIV
counseling and voluntary testing, treatment, and outreach to
pregnant women, especially those who are racial/ethnic minorities
and substance abusers, and will integrate prevention and treatment
services for women and children. Surveillance for perinatally
HIV-exposed and HIV- infected children will remain a critical
measure of the effectiveness of this campaign (32,40,41,123,124).
CONCLUSION
The
implementation of a national surveillance network to include both
HIV and AIDS case reporting is a necessary response to epidemiologic
trends and new standards for HIV care (125-127). Integrated HIV/AIDS
surveillance programs will provide data to characterize persons in
whom HIV infection has been newly diagnosed, including those with
evidence of recent infection, persons with severe HIV disease
(AIDS), and those dying of HIV disease or AIDS. The revised HIV
surveillance case definition and the establishment of minimum
performance standards will promote uniform case ascertainment and
will ensure that the surveillance data are of sufficient quality for
effective planning and allocation of resources for prevention and
care programs.
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