HIV/AIDS
Federal and State Efforts to Identify Infected Individuals and Connect Them to Care Gao ID: GAO-09-985 September 23, 2009Of the estimated 1.1 million Americans living with HIV, not all are aware of their HIV-positive status. Timely testing of HIV-positive individuals is important to improve health outcomes and to slow the disease's transmission. It is also important that individuals have access to HIV care after being diagnosed, but not all diagnosed individuals are receiving such care. The Centers for Disease Control and Prevention (CDC) provides grants to state and local health departments for HIV prevention and collects data on HIV. In 2006, CDC recommended routine HIV testing for all individuals ages 13-64. The Health Resources and Services Administration (HRSA) provides grants to states and localities for HIV care and services. GAO was asked to examine issues related to identifying individuals with HIV and connecting them to care. This report examines: 1) CDC and HRSA's coordination on HIV activities and steps they have taken to encourage routine HIV testing; 2) implementation of routine HIV testing by select state and local health departments; 3) available information on CDC funding for HIV testing; and 4) available data on the number of HIV-positive individuals not receiving care for HIV. GAO reviewed reports and agency documents and analyzed CDC, HRSA, and national survey data. GAO interviewed federal officials, officials from nine state and five local health departments chosen by geographic location and number of HIV cases, and others knowledgeable about HIV.
The Secretary of Health and Human Services (HHS) is required to ensure that HHS agencies, including CDC and HRSA, coordinate HIV programs to enhance the continuity of prevention and care services. CDC and HRSA have coordinated to assist health care professionals who provide HIV-related services. For example, in 2007 and 2008, CDC provided funding to HRSA to expand consultation services at the National HIV/AIDS Clinicians' Consultation Center. Both CDC and HRSA have taken steps to encourage routine HIV testing--that is, testing all individuals in a health care setting without regard to risk. For example, CDC has funded initiatives on routine HIV testing and HRSA has provided for training as part of these initiatives. Officials from over half of the 14 selected state and local health departments in GAO's review reported implementing routine HIV testing in their jurisdictions. However, according to officials we interviewed, those that implemented it generally did so at a limited number of sites. Officials from most of the selected health departments and other sources knowledgeable about HIV have identified barriers that exist to implementing routine HIV testing, including lack of funding and legal barriers. CDC officials estimated that approximately 30 percent of the agency's annual HIV prevention funding is spent on HIV testing. For example, according to CDC officials, in fiscal 2008, this would make the total amount spent on HIV testing about $200 million out of the $652.8 million CDC allocated for domestic HIV prevention to its Division of HIV/AIDS Prevention. However, CDC officials said that they could not provide the exact amount the Division spends on HIV testing, because they do not routinely aggregate how much all grantees spend on a given activity, including HIV testing. CDC estimated that 232,700 individuals with HIV were undiagnosed--that is, unaware that they were HIV positive--in 2006, and were therefore not receiving care for HIV. CDC has not estimated the total number of diagnosed HIV-positive individuals not receiving care, but has estimated that 32.4 percent, or approximately 12,000, of HIV-positive individuals diagnosed in 2003 did not receive care for HIV within a year of diagnosis. State-level estimates of the number of undiagnosed and diagnosed HIV-positive individuals not receiving care for HIV are not available from CDC. HRSA collects states' estimates of the number of diagnosed individuals not receiving care, but data are not consistently collected or reported by states, and therefore estimates are not available for comparison across all states. HHS provided technical comments on a draft of this report, which GAO incorporated as appropriate.
GAO-09-985, HIV/AIDS: Federal and State Efforts to Identify Infected Individuals and Connect Them to Care
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Report to Congressional Requesters:
United States Government Accountability Office:
GAO:
September 2009:
HIV/AIDS:
Federal and State Efforts to Identify Infected Individuals and Connect
Them to Care:
GAO-09-985:
GAO Highlights:
Highlights of GAO-09-985, a report to congressional requesters.
Why GAO Did This Study:
Of the estimated 1.1 million Americans living with HIV, not all are
aware of their HIV-positive status. Timely testing of HIV-positive
individuals is important to improve health outcomes and to slow the
disease‘s transmission. It is also important that individuals have
access to HIV care after being diagnosed, but not all diagnosed
individuals are receiving such care.
The Centers for Disease Control and Prevention (CDC) provides grants to
state and local health departments for HIV prevention and collects data
on HIV. In 2006, CDC recommended routine HIV testing for all
individuals ages 13-64. The Health Resources and Services
Administration (HRSA) provides grants to states and localities for HIV
care and services.
GAO was asked to examine issues related to identifying individuals with
HIV and connecting them to care. This report examines: 1) CDC and HRSA‘
s coordination on HIV activities and steps they have taken to encourage
routine HIV testing; 2) implementation of routine HIV testing by select
state and local health departments; 3) available information on CDC
funding for HIV testing; and 4) available data on the number of HIV-
positive individuals not receiving care for HIV. GAO reviewed reports
and agency documents and analyzed CDC, HRSA, and national survey data.
GAO interviewed federal officials, officials from nine state and five
local health departments chosen by geographic location and number of
HIV cases, and others knowledgeable about HIV.
What GAO Found:
The Secretary of Health and Human Services (HHS) is required to ensure
that HHS agencies, including CDC and HRSA, coordinate HIV programs to
enhance the continuity of prevention and care services. CDC and HRSA
have coordinated to assist health care professionals who provide HIV-
related services. For example, in 2007 and 2008, CDC provided funding
to HRSA to expand consultation services at the National HIV/AIDS
Clinicians‘ Consultation Center. Both CDC and HRSA have taken steps to
encourage routine HIV testing”that is, testing all individuals in a
health care setting without regard to risk. For example, CDC has funded
initiatives on routine HIV testing and HRSA has provided for training
as part of these initiatives.
Officials from over half of the 14 selected state and local health
departments in GAO‘s review reported implementing routine HIV testing
in their jurisdictions. However, according to officials we interviewed,
those that implemented it generally did so at a limited number of
sites. Officials from most of the selected health departments and other
sources knowledgeable about HIV have identified barriers that exist to
implementing routine HIV testing, including lack of funding and legal
barriers.
CDC officials estimated that approximately 30 percent of the agency‘s
annual HIV prevention funding is spent on HIV testing. For example,
according to CDC officials, in fiscal 2008, this would make the total
amount spent on HIV testing about $200 million out of the $652.8
million CDC allocated for domestic HIV prevention to its Division of
HIV/AIDS Prevention. However, CDC officials said that they could not
provide the exact amount the Division spends on HIV testing, because
they do not routinely aggregate how much all grantees spend on a given
activity, including HIV testing.
CDC estimated that 232,700 individuals with HIV were undiagnosed”that
is, unaware that they were HIV positive”in 2006, and were therefore not
receiving care for HIV. CDC has not estimated the total number of
diagnosed HIV-positive individuals not receiving care, but has
estimated that 32.4 percent, or approximately 12,000, of HIV-positive
individuals diagnosed in 2003 did not receive care for HIV within a
year of diagnosis. State-level estimates of the number of undiagnosed
and diagnosed HIV-positive individuals not receiving care for HIV are
not available from CDC. HRSA collects states‘ estimates of the number
of diagnosed individuals not receiving care, but data are not
consistently collected or reported by states, and therefore estimates
are not available for comparison across all states.
HHS provided technical comments on a draft of this report, which GAO
incorporated as appropriate.
View [hyperlink, http://www.gao.gov/products/GAO-09-985] or key
components. For more information, contact Marcia Crosse at (202) 512-
7114 or crossem@gao.gov.
[End of section]
Contents:
Letter:
Background:
CDC and HRSA Have Coordinated on HIV Activities to Assist Health Care
Professionals, and Both Agencies Have Taken Steps to Encourage Routine
HIV Testing:
Most Selected State and Local Health Departments Reported Not Widely
Implementing Routine HIV Testing in Their Jurisdictions and Barriers
Exist to Its Implementation:
CDC Officials Estimated That About 30 Percent of the Agency's Annual
HIV Prevention Funding Is Spent on HIV Testing:
National Data Suggest That Most HIV Tests and Nearly Half of HIV-
Positive Results Occur in a Private Doctor's Office, HMO, or Hospital
Setting, but the Data on Settings Where People Test Positive Have
Limitations:
A National Estimate of the Number of Undiagnosed HIV-Positive
Individuals Is Available, but an Estimate Is Not Available for the
Total Number of Diagnosed Individuals Not Receiving Care Nationally and
Neither Estimate Is Available at the State Level:
Officials We Interviewed Identified Barriers to Care That Exist for
HIV, but Agencies Have Implemented Initiatives to Connect HIV-Positive
Individuals to Care:
Agency Comments:
Appendix I: Information on Transitioning Prisoners with HIV to Care
Upon Their Release:
Appendix II: Part A Grantees' Living HIV/AIDS Cases Used by HRSA to
Determine Fiscal Year 2009 CARE Act Base Grants:
Appendix III: Part B Grantees' Living HIV/AIDS Cases Used by HRSA to
Determine Fiscal Year 2009 CARE Act Base Grants:
Appendix IV: GAO Contact and Staff Acknowledgments:
Abbreviations:
AETC: AIDS Education and Training Centers:
AIDS: acquired immunodeficiency syndrome:
CARE Act: Ryan White Comprehensive AIDS Resources Emergency Act of
1990:
CDC: Centers for Disease Control and Prevention:
HAART: highly active antiretroviral therapy:
HHS: Department of Health and Human Services:
HIV: human immunodeficiency virus:
HMO: health maintenance organization:
HRSA: Health Resources and Services Administration:
NASTAD: National Alliance of State and Territorial AIDS Directors:
NHIS: National Health Interview Survey:
STD: sexually transmitted disease:
[End of section]
United States Government Accountability Office:
Washington, DC 20548:
September 23, 2009:
The Honorable Michael B. Enzi:
Ranking Member:
Committee on Health, Education, Labor, and Pensions:
United States Senate:
The Honorable Richard Burr:
United States Senate:
The Honorable Tom A. Coburn:
United States Senate:
The Honorable Lisa Murkowski:
United States Senate:
It has been more than 28 years since the first cases of acquired
immunodeficiency syndrome (AIDS) in the United States were reported in
June 1981. Since that time, approximately 1.7 million Americans have
been infected with human immunodeficiency virus (HIV), including more
than 580,000 who have died.[Footnote 1] The most recent data available
from the Department of Health and Human Services' (HHS) Centers for
Disease Control and Prevention (CDC) estimates that there were 1.1
million people living with HIV in the United States at the end of 2006,
and that 56,300 new HIV infections occurred that year.[Footnote 2]
Not all of those living with HIV are aware of their HIV-positive
status. Timely testing of individuals who are HIV positive but have not
yet been diagnosed is important both in improving health outcomes for
those individuals and in slowing transmission of the disease. Research
has shown that the earlier individuals are treated for HIV the better
their prognosis becomes. In addition, many individuals who know that
they are HIV positive adopt behaviors that reduce their risk of
spreading the disease, while those who are unaware of their status are
more likely to pass HIV on to others. According to CDC, it has been
estimated that the majority of new HIV infections are transmitted from
individuals who are unaware of their status.
Testing for HIV can occur in health care settings,[Footnote 3] such as
public health clinics, private doctors' offices, health maintenance
organizations (HMO), and emergency rooms, or in non-health care
settings, such as community-based organizations.[Footnote 4] According
to data from the 2007 National Health Interview Survey (NHIS), less
than 40 percent of adults in the United States reported having ever
been tested for HIV.[Footnote 5] Further, CDC estimates that in 2006,
36 percent of those who were diagnosed with HIV were not tested until
late in the course of their disease, meaning that they were diagnosed
with AIDS within 1 year of receiving an HIV-positive result. A number
of studies have shown that late testing can occur after HIV-positive
individuals have made numerous visits to health care settings,
indicating missed opportunities to test for HIV.
HIV testing is the first step to connecting HIV-positive individuals to
the care that they need. Connecting HIV-positive individuals to care
can occur through, for example, assistance in scheduling appointments
and by providing transportation to and from appointments. It is also
important to ensure that individuals have access to and remain in care
after they have been diagnosed. New advances in HIV treatments have
reduced mortality rates and have the potential to extend the lives of
individuals diagnosed with HIV. However, not all diagnosed HIV-positive
individuals are accessing care options.
CDC provides funding to state and local health departments for HIV
prevention, including counseling, testing, and referral services,
through cooperative agreements, grants, and contracts.[Footnote 6] CDC
also provides funding to community-based organizations and a smaller
amount to national professional organizations such as the National
Medical Association. In addition to providing funding, CDC conducts
research, surveillance, and epidemiologic studies on HIV.[Footnote 7]
CDC has also issued a series of recommendations related to HIV testing
in health care settings, the most recent of which were released in
2006.[Footnote 8] A major component of the 2006 recommendations is for
all health care settings to test all individuals for HIV without regard
to risk--a practice called routine HIV testing.[Footnote 9] This
represents a significant change from prior CDC guidance, which
generally recommended that health care settings target testing to
groups at high risk of contracting HIV or to high-prevalence areas.
[Footnote 10] Additionally, CDC has identified the requirement for
separate written informed consent or pretest counseling as barriers to
routine HIV testing.[Footnote 11] While the 2006 recommendations
suggest these practices not be required for HIV testing, there is some
disagreement over whether this would take away important protections.
States and localities are not required to adopt CDC's recommendations,
and state HIV testing laws vary. For example, according to a study on
state HIV testing laws, some states' laws require separate written
informed consent for HIV testing and others do not.[Footnote 12]
While CDC is the federal agency primarily responsible for HIV
prevention, HHS' Health Resources and Services Administration (HRSA) is
the agency responsible for administering grant programs authorized by
the Ryan White Comprehensive AIDS Resources Emergency Act of 1990 (CARE
Act) and subsequent legislation that provide funding to states,
localities, and others for HIV-related services. The CARE Act was
enacted to address the needs of jurisdictions, health care providers,
and people with HIV and their family members.[Footnote 13] Each year,
assistance to over 530,000 mostly low-income, underinsured, or
uninsured individuals living with HIV is provided through CARE Act
programs. The 2006 reauthorization of CARE Act programs, like the 2000
reauthorization, required states to submit an estimate of the size and
demographics of the population with HIV within the state and a
determination of those who have HIV but are not receiving HIV-related
services. HRSA characterizes this as an unmet need estimate, that is,
the number of individuals in a state who know their HIV-positive status
but who are not receiving care for HIV.[Footnote 14] In addition to
administering CARE Act programs, HRSA provides training to health care
providers and community service workers who work with people with HIV
and evaluates best-practice models of health care delivery.
Given their respective roles in funding HIV prevention and care, CDC
and HRSA have coordinated on HIV activities in the past. Additionally,
the CARE Act requires the Secretary of HHS to ensure that HHS agencies,
including CDC and HRSA, coordinate HIV programs to enhance the
continuity of prevention and care services for individuals with HIV or
those at risk of the disease.[Footnote 15]
As Congress prepares to reauthorize CARE Act programs, you asked us to
examine various issues related to identifying and caring for
individuals with HIV. In this report, we examine: (1) the actions taken
by CDC and HRSA since 2006 to coordinate on HIV-related activities, and
steps the agencies have taken to encourage implementation of routine
HIV testing; (2) the extent to which select state and local health
departments have implemented routine HIV testing in their jurisdictions
and what barriers exist to its implementation; (3) available
information on how much of CDC's HIV prevention funding is spent on HIV
testing;[Footnote 16] (4) national data on the types of settings where
HIV tests are conducted and the types of settings where HIV-positive
results occur; (5) available data on national and state estimates of
the number of undiagnosed and diagnosed HIV-positive individuals who
are not receiving care for HIV; and (6) what barriers exist to care for
HIV and what initiatives are being implemented to connect diagnosed HIV-
positive individuals to such care. In this report, we also provide
information on transitioning prisoners with HIV to care upon their
release. This information is provided in appendix I.[Footnote 17]
To examine the actions taken by CDC and HRSA to coordinate on HIV-
related activities, and steps the agencies have taken to encourage
implementation of routine HIV testing, we reviewed reports that
describe programs administered by the two agencies. We also reviewed
meeting minutes from the CDC/HRSA Advisory Committee on HIV and
Sexually Transmitted Diseases (STD) Prevention to identify HIV
activities coordinated by CDC and HRSA. In addition, we interviewed
officials at CDC and HRSA as well as a judgmental sample of officials
from 14 state and local health departments knowledgeable about these
topics.[Footnote 18] We selected health departments based on their
geographic location and the number of HIV cases in their jurisdiction.
Our sample is not generalizable to all state and local health
departments.
To examine the extent to which select state and local health
departments have implemented routine HIV testing in their jurisdictions
and what barriers exist to its implementation, we interviewed our
sample of officials from state and local health departments as well as
officials from the Henry J. Kaiser Family Foundation, the National
Alliance of State and Territorial AIDS Directors (NASTAD), and other
organizations that work on HIV-related issues, including an
organization that contracts with state and local health departments to
coordinate HIV-related issues and an association for HIV providers. We
also reviewed medical journal articles and reports by the Henry J.
Kaiser Family Foundation and NASTAD on the implementation of routine
testing. We did not conduct a state-by-state review of all laws related
to HIV testing or independently verify information related to state
laws.
To examine available information on how much of CDC's HIV prevention
funding is spent on HIV testing, we reviewed CDC budget information and
interviewed officials at CDC.
To examine national data on the types of settings where HIV tests are
conducted, we examined NHIS data from 2007 on the number of HIV tests
conducted by setting type. We performed data reliability checks by
testing for missing data and outliers and compared our results to
published data on this topic and determined that these data were
sufficiently reliable for our purposes. To examine available data on
the types of settings where HIV-positive results occur, we obtained and
reviewed 2007 CDC surveillance data on the number of HIV-positive
results by facility of diagnosis. We reviewed related documentation and
interviewed agency officials and determined these data were
sufficiently reliable for our purposes.
To examine available data on national and state estimates of the number
of undiagnosed and diagnosed HIV-positive individuals who are not
receiving care for HIV, we reviewed CDC surveillance data and the unmet
need estimates reported by CARE Act grantees to HRSA. We also obtained
and reviewed information from CDC and HRSA on how these estimates are
calculated. We reviewed related documentation and interviewed agency
officials to determine if national-and state-level data were reliable
for our purposes. We determined that national data on undiagnosed HIV-
positive individuals not receiving care were sufficiently reliable for
our purposes. We also determined that national data on the number of
diagnosed HIV-positive individuals not receiving care were reliable,
but not comprehensive. Finally, we determined that state-level data on
the number of diagnosed HIV-positive individuals not receiving care are
not consistently collected or reported across states, and therefore
were not reliable for our purposes.
To examine what barriers exist to care for HIV and what initiatives are
being implemented to connect diagnosed HIV-positive individuals to such
care, we interviewed officials at CDC and HRSA and our sample of
officials from state and local health departments.
We conducted this performance audit from April 2009 through September
2009 in accordance with generally accepted government auditing
standards. Those standards require that we plan and perform the audit
to obtain sufficient, appropriate evidence to provide a reasonable
basis for our findings and conclusions based on our audit objectives.
We believe that the evidence obtained provides a reasonable basis for
our findings and conclusions based on our audit objectives.
Background:
According to 2007 NHIS data, fewer than 40 percent of adults in the
United States reported ever having been tested for HIV. In a recent
survey by the Henry J. Kaiser Family Foundation, the primary reason
people gave for not being tested is that they do not think they are at
risk.[Footnote 19] The second most common reason was that their doctor
never recommended HIV testing. While 38 percent of adults said that
they had talked to their doctor about HIV, only 17 percent said that
their doctor had suggested an HIV test. According to this survey,
African Americans and Latinos were more likely than adults overall to
have had such a conversation with their doctor and for the doctor to
have suggested testing. Sixty-seven percent of African Americans and 45
percent of Latinos said that they had talked to their doctor about HIV
and 29 percent of African Americans and 28 percent of Latinos said that
their doctor had suggested an HIV test.
Technological advances have increased the benefits associated with HIV
testing as well as with regular care and treatment for HIV. First,
advances in testing methods, such as rapid HIV tests, have made testing
more feasible in a variety of different settings and increased the
likelihood that individuals will receive their results. Rapid tests
differ from conventional HIV tests in that results are ready sometime
from immediately after the test is performed to 20 minutes after the
test is performed, which means that individuals can get tested and
receive their results in the same visit.[Footnote 20] Second, the
advent of highly active antiretroviral therapy (HAART) has transformed
HIV from a fatal disease to a treatable condition.[Footnote 21] For
example, a 25-year-old individual who is in care for HIV can expect to
live only 12 years less than a 25-year-old individual who does not have
HIV.
In addition, studies have found that people generally reduce risky
behaviors once they learn of their HIV-positive status. According to
one study, people who are unaware that they are HIV positive are 3.5
times more likely to transmit the disease to their partners than people
who know their status.[Footnote 22] At the same time, research has
shown that individuals are often unaware of their status until late in
the course of the disease despite visits to health care settings. For
example, one study looked at HIV case reporting in a state over a 4-
year period. The study found that of people who were diagnosed with HIV
late in the course of the disease, 73 percent made at least one visit
to a health care setting prior to their first reported positive HIV
test, and the median number of prior visits was four.[Footnote 23]
Funding for HIV Testing:
Funding for HIV testing can come from insurance reimbursement by
private insurers as well as Medicaid and Medicare, although these
payers do not cover HIV testing under all circumstances.[Footnote 24]
Funding for HIV testing can also come from other government sources,
such as CDC, CARE Act programs, or state and local funding. A study by
CDC and the Henry J. Kaiser Family Foundation that looked at the
insurance coverage of individuals at the time of their HIV diagnosis
from 1994-2000 found that 22 percent were covered by Medicaid, 19
percent were covered by other public-sector programs, and 27 percent
were uninsured.
The cost of an HIV test varies based on a number of factors, including
the type of test performed, the test result, and the amount of
counseling that is associated with the test. For example, from a
payer's perspective, the costs of a rapid HIV test are higher for
someone who is HIV positive than for someone who is not, primarily
because rapid testing requires an initial rapid test and a confirmatory
test when the result is positive with counseling conducted after both
tests. Additionally, eliminating pretest counseling can lower the cost
of HIV testing by about $10, regardless of the type of test. According
to the most recent data available from CDC, in 2006, the cost of an HIV
test could range from $10.16 to $86.84 depending on these and other
factors.
CDC HIV Testing Recommendations:
CDC issued its first recommendations for HIV testing in health care
settings in 1987. These recommendations focused on individuals engaged
in high-risk behaviors and specifically recommended that people who
were seeking treatment for STDs be tested for HIV on a routine basis.
Throughout the 1990s and 2000s CDC updated these recommendations
periodically to reflect new information about HIV. For example, in
2001, CDC modified its recommendations for pregnant women to emphasize
that HIV testing should be a routine part of prenatal care and that the
testing process should be simplified to eliminate barriers to testing,
such as requiring pretest counseling.[Footnote 25] CDC's 2001
recommendations also recommended that HIV testing be conducted
routinely in all health care settings with a high prevalence of HIV; in
low-prevalence settings it was recommended that HIV testing be
conducted based on an assessment of risk. In 2003, CDC introduced a new
initiative called "Advancing HIV Prevention: New Strategies for a
Changing Epidemic." The initiative had a number of strategies,
including two that specifically applied to health care settings: (1)
making HIV testing a routine part of medical care; and (2) further
reducing perinatal transmission of HIV by universally testing all
pregnant women and by using HIV rapid tests during labor and delivery
or postpartum if the mother had not been tested previously.
Elements of the Advancing HIV Prevention initiative were incorporated
into CDC's revised HIV testing recommendations for heath care settings
in 2006.[Footnote 26] The 2006 recommendations represent a major shift
from prior recommendations for health care settings in that they no
longer base HIV testing guidelines on risk factors. Rather, they
recommend that routine HIV testing be conducted for all patients ages
13 through 64 in all health care settings on an opt-out basis.[Footnote
27] CDC also recommends that persons at high risk of HIV be tested
annually; that general consent for medical care encompass consent for
HIV testing (i.e., separate written consent is not necessary); and that
pretest information, but not pretest counseling be required.[Footnote
28]
CDC HIV and AIDS Surveillance:
According to CDC, tracking the prevalence of HIV is necessary to help
prevent the spread of the disease. CDC's surveillance system consists
of case counts submitted by states on the number of HIV and AIDS
diagnoses, the number of deaths among persons with HIV, the number of
persons living with HIV or AIDS, and the estimated number of new HIV
infections. HIV laboratory tests, specifically CD4 or viral load tests,
can be used to determine the stage of the disease, measure unmet health
care needs among HIV-infected persons, and evaluate HIV testing and
screening activities.[Footnote 29]
Current CDC estimates related to HIV are not based on data from all
states because not all states have been reporting such data by name
long enough to be included in CDC's estimates. While all states collect
AIDS case counts through name-based systems, prior to 2008 states
collected HIV data in one of two different formats, either by name or
by code.[Footnote 30] CDC does not accept code-based case counts for
counting HIV cases because CDC does not consider them to be accurate
and reliable, primarily because they include duplicate case counts. In
order for CDC to use HIV case counts from a state for CDC's estimated
diagnoses of HIV infection, the name-based system must be mature,
meaning that the state has been reporting HIV name-based data to CDC
for 4 full calendar years. CDC requires this time period to allow for
the stabilization of data collection and for adjustment of the data in
order to monitor trends. In its most recent surveillance report, CDC
used the name-based HIV case counts from 34 states and 5 territories
and associated jurisdictions in its national estimates.[Footnote 31]
Name-based HIV reporting had been in place in these jurisdictions since
the end of 2003 or earlier.
The CARE Act:
Under the CARE Act, approximately $2.2 billion in grants were made to
states, localities, and others in fiscal year 2009. Part A of the CARE
Act provides for grants to selected metropolitan areas that have been
disproportionately affected by the HIV epidemic to provide care for HIV-
positive individuals. Part B provides for grants to states and
territories and associated jurisdictions to improve quality,
availability, and organization of HIV services. Part A and Part B base
grants are determined by formula based on the number of individuals
living with HIV and AIDS in the grantee's jurisdiction.[Footnote 32]
For the living HIV/AIDS case counts HRSA used to determine fiscal year
2009 Part A and Part B base grants, see appendices II and III. Part C
provides for grants to public and private nonprofit entities to provide
early intervention services, such as HIV testing and ambulatory care.
[Footnote 33] Part F provides for grants for demonstration and
evaluation of innovative models of HIV care delivery for hard-to-reach
populations, training of health care providers, and for Minority AIDS
Initiative grants.[Footnote 34]
Since the 2006 reauthorization of CARE Act programs, HRSA has placed an
emphasis on states' unmet need, which is the number of individuals in a
state's jurisdiction who know they are HIV positive but who are not
receiving care for HIV. According to the framework used by HRSA,
addressing unmet need is a three-step process. First, states are
required to produce an unmet need estimate, which is submitted to HRSA
on the state's annual Part B grant application.[Footnote 35] To
calculate the unmet need, the state must determine the total number of
individuals who are aware of their HIV positive status in their
jurisdiction, and then subtract the number of individuals who are
receiving care for HIV.[Footnote 36] Second, the state must assess the
service needs and barriers to care for individuals who are not
receiving care for HIV, including finding out who they are and where
they live. Third, the state must address unmet need by connecting these
individuals to care.
CDC and HRSA Have Coordinated on HIV Activities to Assist Health Care
Professionals, and Both Agencies Have Taken Steps to Encourage Routine
HIV Testing:
CDC and HRSA have coordinated on activities to assist health care
professionals who provide HIV-related services. HRSA has encouraged
routine HIV testing by providing for training for health care
providers, as part of CDC-funded initiatives. CDC has taken other steps
to encourage routine HIV testing by funding special initiatives that
focus on certain populations.
CDC and HRSA Have Coordinated Activities to Assist Health Care
Professionals Who Provide HIV-Related Services:
Since 2006, CDC and HRSA have coordinated activities to assist health
care professionals who provide HIV-related services. In 2007, CDC and
HRSA initiated a clinic-based research study to develop, implement, and
test the efficiency and effectiveness of an intervention designed to
increase client appointment attendance among patients at risk of
missing scheduled appointments in HIV clinics, "Increasing Retention in
Care among Patients Being Treated for HIV Infection." An interagency
agreement outlined the responsibilities of CDC and HRSA with respect to
the study.[Footnote 37] For example, under the agreement, CDC is
responsible for maintaining data gathered from the study and HRSA is
responsible for presenting their findings at national and international
conferences. Each agency provided $1.3 million for the study in fiscal
year 2009 and will continue to provide funds for the study until its
final year of operation in 2011.
In coordination with a federal interagency work group, CDC and HRSA
have also participated in the development and publication of a document
for case managers who work with individuals with HIV.[Footnote 38] The
document, "Recommendations for Case Management Collaboration and
Coordination in Federally Funded HIV/AIDS Programs," outlines best
practices for, and six recommended components of, HIV case management
for federally funded HIV case management agencies.[Footnote 39] The
document also describes how case management is practiced in different
settings and methods for strengthening linkages among case management
programs.[Footnote 40] CDC and HRSA were the lead authors of the
document and shared staff time and production expenses. The agencies
published the document in February 2009.
CDC also provided HRSA with funding to expand HIV consultation services
offered to health care professionals at the National HIV/AIDS
Clinicians' Consultation Center. The National HIV/AIDS Clinicians'
Consultation Center is a component of the HRSA-administered AIDS
Education and Training Centers (AETC) program.[Footnote 41] The
Consultation Center operates hotline systems to provide consultation to
health care professionals, including the PEPline and Perinatal Hotline.
Health care professionals access the PEPline to receive information on
post-exposure management for health care professionals exposed to blood-
borne pathogens and the Perinatal Hotline for information on treatment
and care for HIV-diagnosed pregnant women and their infants. CDC
provided HRSA with $169,000 to support the PEPline and Perinatal
Hotline in fiscal year 2007 and $90,000 to support the PEPline in
fiscal year 2008. In addition, CDC provided HRSA with $180,000 during
fiscal years 2007 and 2008 for the enhancement of existing consultation
services at the Consultation Center for health care professionals who
expand HIV testing and need assistance in managing a resulting increase
in patients who are HIV positive.
In addition, CDC and HRSA have coordinated to prevent duplication of
HIV training provided to health care professionals. The CDC-funded
National Network of STD/HIV Prevention Training Centers, HRSA-funded
AETCs, and other federal training centers, participate in the Federal
Training Centers Collaboration to ensure that HIV training
opportunities are not duplicated among the centers.[Footnote 42] The
agencies hold biennial national meetings to increase training
coordination of STD/HIV prevention and treatment, family planning/
reproductive health, and substance abuse prevention to maximize the use
of training resources.[Footnote 43]
In addition to coordinating on HIV activities that assist health care
professionals, CDC and HRSA have participated in the CDC/HRSA Advisory
Committee on HIV and STD Prevention and Treatment. The Advisory
Committee was established by the Secretary of HHS in November 2002 to
assess HRSA and CDC objectives, strategies, policies, and priorities
for HIV and STD prevention and care and serves as a forum to discuss
coordination of HIV activities. The committee meets twice a year and is
comprised of 18 individuals who are nominated by the HHS Secretary to
serve 2-to 4-year terms and are knowledgeable in such public health
fields as epidemiology, infectious diseases, drug abuse, behavioral
science, health care delivery and financing, state health programs,
clinical care, preventive health, and clinical research. The members
assess the activities administered by HRSA and CDC, including HIV
testing initiatives and training programs, and make recommendations for
improving coordination between the two agencies to senior department
officials, including the HHS Secretary. Officials from CDC and HRSA
regularly attend the meetings to present current HIV initiatives
administered by their agencies.
Officials from 6 of the 14 state and local health departments we
interviewed said that CDC and HRSA coordination on HIV activities could
be improved. For example, officials from 3 of these health departments
attributed the lack of coordination to differing guidelines CDC and
HRSA use for their grantees. Officials from 1 health department stated
that although they have the same desired outcome, CDC and HRSA do not
always coordinate on activities that they fund. They noted that the two
agencies have inconsistent policies for HIV-related activities, such as
confidentiality guidelines and policies for data sharing. Officials
from another health department stated that the two agencies could
improve coordination on HIV testing and guidelines for funding HIV
testing initiatives.
HRSA Has Encouraged Routine HIV Testing by Providing for Training for
Health Care Providers as Part of CDC-Funded Initiatives:
Since the release of CDC's 2006 routine HIV testing recommendations,
HRSA has encouraged routine HIV testing by providing for training for
health care providers, as part of CDC-funded initiatives. CDC and HRSA
developed interagency agreements through which CDC provided $1.75
million in 2007 and $1.72 million in 2008 to HRSA-funded AETCs to
develop curricula, training, and technical assistance for health care
providers interested in implementing CDC's 2006 routine HIV testing
recommendations.[Footnote 44] As of June 2008, AETCs had conducted over
2,500 training sessions to more than 40,000 health care providers on
the recommendations.
HRSA provided for training during CDC-funded strategic planning
workshops on routine HIV testing for hospital staff. CDC officials said
that in 2007, the agency allocated over $900,000 for workshops in eight
regions across the country on implementing routine HIV testing in
emergency departments. CDC reported that 748 attendees from 165
hospitals participated in these workshops. HRSA-funded AETCs from each
of the eight regions provided information on services they offer
hospitals as they prepare to implement routine HIV testing, and also
served as facilitators during the development of hospital-specific
strategic plans.
In addition, HRSA provided for training as part of a CDC-funded pilot
project to integrate routine HIV testing into primary care at community
health centers. HRSA officials said that their primary role in this
project, called "Routine HIV Screening within Primary Care in Six
Southeastern Community Health Centers," was to provide for training on
routine HIV testing and to ensure that HIV-positive individuals were
connected to care, and that CDC provided all funding for the project.
CDC officials told us that the first phase of the project funded
routine HIV testing in two sites in Mississippi, two sites in South
Carolina, and two sites in North Carolina. The CDC officials said that
in 2008 four sites in Ohio were added and that these sites are
receiving funding through CDC's Expanded HIV Testing initiative. CDC
officials said that they plan to start a second phase of the project
with additional testing sites.
CDC Has Taken Other Steps to Encourage Routine HIV Testing:
CDC has taken other steps to encourage routine HIV testing by funding
special initiatives that focus on certain populations. In 2007, CDC
initiated a 3-year project for state and local health departments
called the "Expanded and Integrated Human Immunodeficiency Virus (HIV)
Testing for Populations Disproportionately Affected by HIV, Primarily
African Americans" initiative or the Expanded HIV Testing initiative.
In the first year of the initiative, CDC awarded just under $35 million
to 23 state and local health departments that had an estimated 140 or
more AIDS cases diagnosed among African Americans in 2005. Individual
awards were proportionately based on the number of cases, with amounts
to each jurisdiction ranging from about $700,000 to over $5 million.
Funding after the first year of the initiative was to be awarded to
these same health departments on a noncompetitive basis assuming
availability of funds and satisfactory performance.[Footnote 45]
Funding for the second year of the initiative was just over $36 million
and included funding for 2 additional health departments, bringing the
total number of funded departments to 25.
CDC asked health departments participating in the Expanded HIV Testing
initiative to develop innovative pilot programs to expand testing
opportunities for populations disproportionately affected by HIV--
primarily African Americans--who are unaware of their status. CDC
required health departments to spend all funding on HIV testing and
related activities, including the purchase of HIV rapid tests and
connecting HIV-positive individuals to care. CDC strongly encouraged
applicants to focus at least 80 percent of their pilot program
activities on health care settings, including settings to which CDC had
not previously awarded funding for HIV testing, such as emergency
rooms, inpatient medical units, and urgent care clinics. Additionally,
CDC required that programs in health care settings follow the agency's
2006 routine HIV testing recommendations to the extent permitted by
law. Programs in non-health care settings were to have a demonstrated
history of at least a 2 percent rate of HIV-positive test results.
The 2006 reauthorization of CARE Act programs included a provision for
the Early Diagnosis Grant program under which CDC would make HIV
prevention funding for each of fiscal years 2007 through 2009 available
to states that had implemented policies related to routine HIV testing
for certain populations.[Footnote 46] These policies were (1) voluntary
opt-out testing of all pregnant women and universal testing of newborns
or (2) voluntary opt-out testing of patients at STD clinics and
substance abuse treatment centers.[Footnote 47] CDC's fiscal year 2007
appropriation prohibited it from using funding for Early Diagnosis
grants. In fiscal year 2008, CDC's appropriation provided up to $30
million for the grants. CDC officials told us that in 2008, the agency
awarded $4.5 million to the six states that had implemented at least
one of the two specified policies as of December 31, 2007. In fiscal
year 2009, CDC's appropriation provided up to $15 million for grants to
states newly eligible for the program.[Footnote 48] CDC officials said
that in 2009, one state received funding for implementing voluntary opt-
out testing at STD clinics and substance abuse treatment
centers.[Footnote 49] CDC officials also told us that they provided
HRSA with information on how the Early Diagnosis Grant program would be
implemented, but have not coordinated with the agency on administration
of the program.
Most Selected State and Local Health Departments Reported Not Widely
Implementing Routine HIV Testing in Their Jurisdictions and Barriers
Exist to Its Implementation:
Officials from just over half of the state and local health departments
we interviewed said that their departments had implemented routine HIV
testing in their jurisdictions, but that they generally did so in a
limited number of sites. Officials from most of the health departments
we interviewed and other sources knowledgeable about HIV have
identified barriers to routine HIV testing, including lack of funding.
Over Half of the Selected State and Local Health Departments Reported
Implementing Routine HIV Testing in Their Jurisdictions, but Generally
Did So in a Limited Number of Sites:
Officials from 9 of the 14 state and local health departments we
interviewed said that their departments had implemented routine HIV
testing, but 7 said that they did so in a limited number of sites.
Specifically, officials from 5 of the state health departments we
interviewed said that their departments had implemented routine HIV
testing in anywhere from one to nine sites and officials from 2 of the
local health departments said that their departments had implemented it
in two and four sites, respectively. Officials from all but 1 of these
7 departments said that their departments used funding from CDC's
Expanded HIV Testing initiative to implement routine HIV
testing.[Footnote 50] CDC's goal for its Expanded HIV Testing
initiative is to test 1.5 million individuals for HIV in areas
disproportionately affected by the disease and identify 20,000 HIV-
infected persons who are unaware of their status per year. During the
first year of the initiative,[Footnote 51] health departments that
received funding under the CDC initiative reported conducting just
under 450,000 HIV tests and identifying approximately 4,000 new HIV-
positive results.[Footnote 52]
The two other health departments that had implemented routine HIV
testing--one state health department and one local health department
located in a large city--had been able to implement routine HIV testing
more broadly. These departments had implemented routine HIV testing
prior to receiving funding through the Expanded HIV testing initiative,
and used the additional funding to expand the number of sites where it
was implemented. For example, the local health department had started
an initiative to achieve universal knowledge of HIV status among
residents in an area of the city highly affected by HIV. The department
used funding from the Expanded HIV Testing initiative and other funding
sources to implement routine HIV testing in this area and other sites
throughout the city, including 20 emergency rooms. An official from the
state health department said that while the department had already
funded routine HIV testing in some settings, for example STD clinics
and community health centers, funding from the Expanded HIV Testing
initiative allowed them to fund routine HIV testing in other types of
settings, for example emergency rooms.
Officials from five health departments we interviewed said that their
departments had not implemented routine HIV testing in their
jurisdictions, including three state health departments and two local
health departments. None of these health departments received funding
through CDC's Expanded HIV Testing initiative, and officials from two
of the state health departments specifically cited this as a reason why
they had not implemented routine HIV testing. Officials from all of the
departments that had not implemented routine HIV testing said that
their departments do routinely test certain populations for HIV,
including pregnant women, injection drug users, and partners of
individuals diagnosed with HIV.
Officials from Selected State and Local Health Departments and Other
Sources Have Identified Barriers That Exist to Implementing Routine HIV
Testing:
Officials from 11 of the 14 state and local health departments we
interviewed and other sources knowledgeable about HIV have identified
barriers that exist to implementing routine HIV testing. Officials from
5 of the 11 health departments cited lack of funding as a barrier to
routine HIV testing. For example, an official from 1 state health
department told us that health care providers have said that they would
do routine HIV testing if they could identify who would pay for the
cost of the tests. The need for funding was corroborated by officials
from an organization that contracts with state and local health
departments to coordinate HIV-related care and services. These
officials told us that they had often seen routine HIV testing end when
funding streams dried up and noted that there has been little
implementation of CDC's 2006 routine HIV testing recommendations in
their area outside of STD clinics and programs funded through the
Expanded HIV Testing initiative.
Officials from state and local health departments we interviewed and
other sources also cited lack of insurance reimbursement as a barrier
to routine HIV testing. When identifying lack of funding as a barrier
to routine HIV testing, officials from two state health departments we
interviewed explained that there is a general lack of insurance
reimbursement for this purpose. Other organizations we interviewed and
CDC also raised the lack of insurance reimbursement for routine HIV
testing as a barrier. For example, one provider group that we spoke
with said that many providers are hesitant to offer HIV tests without
knowing whether they will be reimbursed for it. In a recent
presentation, CDC reported that out of 11 insurance companies, as of
May 2009, all covered targeted HIV testing,[Footnote 53] but only 6
reimbursed for routine HIV testing.[Footnote 54] CDC also reported that
as of this same date only one state required that insurers reimburse
for HIV tests regardless of whether testing is related to the primary
diagnosis.[Footnote 55] CDC noted that legislation similar to this
state's has been introduced, but not passed, in two other states as
well as at the federal level.
Medicare does not currently reimburse for routine HIV testing, though
the Centers for Medicare & Medicaid Services initiated a national
coverage analysis as the first step in determining whether Medicare
should reimburse for this service.[Footnote 56] While federal law
allows routine HIV testing as a covered service under Medicaid,
individual states decide whether or not they will reimburse for routine
HIV testing. According to one study, reimbursement for routine HIV
testing has not been widely adopted by state Medicaid
programs.[Footnote 57] Many insurers, including Medicare and Medicaid,
base their reimbursement policies on the recommendations of the U.S.
Preventive Services Task Force, which is the leading independent panel
of private-sector experts in prevention and primary care.[Footnote 58]
While the Task Force has recommended that clinicians conduct routine
HIV testing when individuals are at increased risk of HIV infection and
for all pregnant women, it has not made a recommendation for routine
HIV testing when individuals are not at increased risk, saying that the
benefit in this case is too small relative to the potential harms.
[Footnote 59]
In addition, officials from three state health departments we
interviewed discussed legal barriers to implementing routine testing.
For example, officials from one department said that implementation of
routine HIV testing would require a change in state law to eliminate
the requirement for pretest counseling and written informed consent.
Similarly, officials from another department said that while their
department had been able to conduct routine testing through the
Expanded HIV Testing initiative, expanding it further might require
changing state law to no longer require written informed consent for
HIV testing. The officials explained that while the initiative did have
a written informed consent form, the department had been able to
greatly reduce the information included on the form in this instance.
The department is currently in the process of looking for ways to
further expand HIV testing without having to obtain changes to state
law. According to a study published in the Annals of Internal Medicine,
as of September 2008, 35 states' laws did not present a barrier to
implementing routine HIV testing, though the 3 states discussed above
were identified as having legal barriers.[Footnote 60]
Officials from 3 of the state and local health departments we
interviewed discussed operational barriers to integrating routine HIV
testing with the policies and practices already in place in health care
settings. For example, an official from a state health department said
that the department tries to work past operational barriers to routine
HIV testing, but if after 6 months the barriers prove too great in one
site the department moves implementation of routine HIV testing to
another site. An official from another state health department noted
that in hospital settings it can take a long time to obtain approval
for new protocols associated with routine HIV testing. NASTAD conducted
a survey of the 25 state and local health departments that received
funding through the Expanded HIV Testing initiative and found that
health departments reported some barriers in implementing routine HIV
testing, including obtaining buy-in from staff in health care settings
and providing adequate training, education, and technical assistance to
this staff. Other barriers mentioned by officials from health
departments we interviewed included health care providers not being
comfortable testing everyone for HIV and the ability of providers to
provide care for the increased number of people who might be diagnosed
through expanded HIV testing.
CDC Officials Estimated That About 30 Percent of the Agency's Annual
HIV Prevention Funding Is Spent on HIV Testing:
CDC officials estimated that approximately 30 percent of the agency's
annual HIV prevention funding is spent on HIV testing. For example,
according to CDC officials, in fiscal year 2008 this would make the
total amount spent on HIV testing about $200 million out of the $652.8
million CDC allocated for domestic HIV prevention to its Division of
HIV/AIDS Prevention.[Footnote 61] Of the $200 million CDC officials
estimated was spent on testing, CDC did report that, in fiscal year
2008, $51.1 million was spent on special HIV testing initiatives, such
as the Expanded HIV testing initiative and the Early Diagnosis Grant
program.[Footnote 62]
CDC officials said that, outside of special testing initiatives, they
could not provide the exact amount CDC spent on HIV testing. CDC's
Division of HIV/AIDS Prevention spends the majority of its domestic HIV
prevention budget in connection with cooperative agreements, grants,
and contracts to state and local health departments and other funded
entities. CDC officials explained that grantees submit reports to CDC
on the activities they fund at the middle and end of the year. The
officials said that while project officers check to see that these
reports are consistent with how grantees planned to spend their
funding, CDC does not routinely aggregate how much all grantees spent
on a given activity, including HIV testing. In addition, outside of the
Expanded HIV Testing initiative, CDC does not maintain data on how
funds for HIV testing are distributed to different settings within
jurisdictions. For example, this would mean that CDC does not have data
on how much money a state health department spends on testing in
emergency rooms, versus how much money it spends on testing in
community-based organizations.
National Data Suggest That Most HIV Tests and Nearly Half of HIV-
Positive Results Occur in a Private Doctor's Office, HMO, or Hospital
Setting, but the Data on Settings Where People Test Positive Have
Limitations:
According to data from NHIS, nearly 70 percent of all HIV tests in the
United States were conducted in a private doctor's office, HMO, or
hospital setting in 2007. Specifically, 50 percent of all HIV tests
were conducted in a private doctor's office or HMO and nearly 20
percent of all HIV tests were conducted in a hospital setting,
including emergency departments. The remaining tests were conducted in
a variety of settings, including public clinics and HIV counseling and
testing sites. Less than 1 percent of all HIV tests were conducted in a
correctional facility, STD clinic, or a drug treatment facility. These
data are similar to earlier data from NHIS. In 2002, NHIS found that 44
percent of all HIV tests were conducted in a private doctor's office or
HMO and 22 percent of all HIV tests were conducted in a hospital
setting.
Analysis of CDC surveillance data on the settings in which HIV-positive
individuals are diagnosed suggests that approximately 40 percent of all
HIV-positive results in the United States occurred in a private
doctor's office, HMO, or hospital setting in 2007,[Footnote 63] the
most recent year for which data were available.[Footnote 64] These data
also suggest that hospital inpatient settings account for a
disproportionate number of HIV-positive results discovered late in the
course of the disease. In 2007, hospital inpatient settings accounted
for 16 percent of all HIV-positive results. Among HIV cases diagnosed
in 2006, these same settings accounted for 31 percent of HIV-positive
results that occurred within 1 year of an AIDS diagnosis.
While CDC surveillance data can provide some indication of the types of
settings where the greatest percentage of HIV-positive results occur,
data limitations did not permit a more detailed analysis of HIV-
positive results by setting type. Specifically, information on facility
of diagnosis was missing or unknown for nearly one out of every four
HIV cases reported through the surveillance system in 2007.[Footnote
65] CDC officials told us that in the past the agency used data from
the Supplement to HIV/AIDS Surveillance project to examine the types of
settings where individuals test positive for HIV, but this project
ended in 2004.[Footnote 66] CDC reported that in place of the
Supplement to HIV/AIDS Surveillance project, the agency has implemented
the Medical Monitoring Project.[Footnote 67] However, data from the
Medical Monitoring Project were not available at the time of our
analysis.[Footnote 68]
A National Estimate of the Number of Undiagnosed HIV-Positive
Individuals Is Available, but an Estimate Is Not Available for the
Total Number of Diagnosed Individuals Not Receiving Care Nationally and
Neither Estimate Is Available at the State Level:
CDC has calculated a national estimate of more than 200,000 undiagnosed
HIV-positive individuals--that is, individuals who were unaware they
are HIV positive and were therefore not receiving care for HIV. CDC
estimated that 232,700 individuals, or 21 percent of the 1.1 million
people living with HIV at the end of 2006, were unaware that they were
HIV positive.[Footnote 69]
CDC does not have a national estimate of the total number of diagnosed
individuals not receiving care, but CDC has calculated a national
estimate of more than 12,000 diagnosed HIV-positive individuals who did
not receive care within a year after they were diagnosed with HIV in
2003. CDC reported that the estimated proportion of individuals with
HIV who did not receive care within a year of diagnosis--which CDC
measures by the number of HIV-positive individuals who did not have a
reported CD4 or viral load test within this time--was 32.4 percent, or
12,285 of the 37,880 individuals who were diagnosed with HIV in
2003.[Footnote 70] Since this estimate is based on the number of HIV-
positive individuals who did not receive care within a year of
diagnosis, this estimate does not include all individuals diagnosed
with HIV who are not receiving care. For example, an individual may
receive care within a year of diagnosis, but subsequently drop out of
care 2 years later. Or an individual may receive care 2 years after
diagnosis. In these examples, the individuals' change in status as
receiving care or not receiving care is not included in CDC's estimate
of the proportion of diagnosed individuals not receiving care.
Although CDC has published these estimates, the agency has noted
limitations to the data used to calculate the number of diagnosed HIV-
positive individuals not receiving care for HIV. First, not all states
require laboratories to report all CD4 and viral load test results;
without this information being reported, CDC's estimates may overstate
the number of individuals who did not enter into care within 1 year of
HIV diagnosis.[Footnote 71] Additionally, in the past, CDC only
required jurisdictions to report an individual's first CD4 or viral
load test, which did not allow CDC to provide an estimate of all HIV-
positive individuals who are not receiving care for HIV after the first
year. CDC is currently disseminating updated data collection software
which will permit the collection and reporting of all results collected
by states. However, CDC officials told us that this software is still
going through quality control checks.
While CDC calculates national estimates of the number of undiagnosed
HIV-positive individuals not receiving care for HIV and the number of
diagnosed HIV-positive individuals who did not receive care within a
year of diagnosis, the agency does not calculate these estimates at the
state level. CDC officials said that these estimates are not available
at the state level because not all states have mature name-based HIV
reporting systems.[Footnote 72] CDC officials said that the agency is
determining what it will need to estimate the number of undiagnosed
individuals at the state level once all states have mature HIV
reporting systems. CDC officials also said that once the new data
collection software to collect CD4 and viral load test results from
states is ready, data on all diagnosed HIV-positive individuals not
receiving care may be available at the state level for those states
with mature name-based HIV reporting systems with laboratory reporting
requirements.[Footnote 73]
HRSA also collects states' estimates of the number of diagnosed HIV-
positive individuals not receiving care for HIV, but data are not
consistently collected or reported by states, and therefore estimates
are not available for comparison across all states. States report their
estimates of the number of diagnosed HIV-positive individuals who are
not receiving care as unmet need estimates to HRSA as a part of the
states' CARE Act Part B grant applications. However, these estimates
have limitations and are not comparable across states. One limitation
is that not all states require laboratory reporting of CD4 and viral
load results for all individuals who receive the tests. States use
reported CD4 and viral load test results to calculate their unmet need,
and, according to HRSA, without data for all individuals who receive
CD4 or viral load tests, a state may overestimate its unmet need.
Another limitation is that the estimates submitted in the states'
fiscal year 2009 grant applications were calculated using differing
time periods. For example, New Hampshire calculated its unmet need
estimate using HIV cases collected as of December 31, 2004, while
Colorado calculated its estimate using data collected as of June 30,
2008. Additionally, not all states have access to information on the
number of individuals receiving care through private insurance;
therefore, these individuals are counted as part of the state's unmet
need.
Officials We Interviewed Identified Barriers to Care That Exist for
HIV, but Agencies Have Implemented Initiatives to Connect HIV-Positive
Individuals to Care:
According to officials we interviewed, several barriers exist that
could prevent HIV-positive individuals from receiving care. HRSA
officials told us that structural barriers within the health care
system, such as no or limited availability of services, inconvenient
service locations and clinic hours, and long wait times for
appointments can influence whether an individual is receiving care for
HIV. Other barriers identified by HRSA officials are the quality of
communication between the patient and provider, lack of or inadequate
insurance, financial barriers, mental illness, and substance abuse.
HRSA officials also noted that personal beliefs, attitudes, and
cultural barriers such as racism, sexism, homophobia, and stigma can
also have an impact on an individual's decision to seek care. Officials
from two states and one local health department we spoke with stated
that transportation was a barrier, while officials from two state
health departments stated that lack of housing was a barrier for access
to care. Unstable housing can prevent individuals with HIV from
accessing health care and adhering to complex HIV treatments because
they must attend to the more immediate need of obtaining shelter.
[Footnote 74]
Agencies have implemented initiatives to connect diagnosed individuals
to care for HIV. For example, part of CDC's Expanded HIV Testing
initiative focused on connecting individuals diagnosed with HIV to
care. In the first year of the initiative, 84 percent of newly
diagnosed patients received their HIV test results and 80 percent of
those newly diagnosed were connected to care. CDC has also funded two
studies that evaluated a case management intervention to connect HIV-
positive individuals to care for HIV. In these studies, case management
was conducted in state and local health departments and community-based
organizations and included up to five visits with a case manager over a
3-month period. In one of these studies, 78 percent of individuals who
participated in case management were still in care 6 months later.
HRSA has developed two initiatives as Special Projects of National
Significance.[Footnote 75] The first initiative, "Enhancing Access to
and Retention in Quality HIV Care for Women of Color," was developed to
implement and evaluate the effectiveness of focused interventions
designed to improve timely entry and retention into quality HIV care
for women of color. The second initiative, the "Targeted HIV Outreach
and Intervention Model Development" initiative, was a 5-year, 10-site
project implemented to bring underserved HIV-positive individuals into
care for HIV. According to HRSA, results of the initiative indicated
that individuals are less likely to have a gap of 4 months or more of
care when they have had nine or more contacts with an outreach program
within the first 3 months of these programs.
In collaboration with AIDS Action, an advocacy organization formed to
develop policies for individuals with HIV, HRSA has also funded the
"Connecting to Care" initiative. AIDS Action and HRSA developed the
initiative to highlight successful methodologies to help connect or
reconnect individuals living with HIV to appropriate and ongoing
medical care. The methodologies were identified from cities across the
country and are being utilized in different settings. The initiative
includes two publications with 42 interventions that have been reported
to be successful in connecting HIV-positive individuals to care. The
publications provide a description, logistics, strengths and
difficulties, and outcomes of each intervention and focus specifically
on homeless individuals, Native Americans, immigrant women, low-income
individuals in urban and rural areas, and currently or formerly
incarcerated individuals. AIDS Action has held training workshops that
provided technical assistance to explain the interventions, including
how to apply the best practices from successful programs.
HRSA provides grants under Part C of the CARE Act to public and private
nonprofit entities to provide early intervention services to HIV-
positive individuals on an outpatient basis that can help connect
people to care. Part C grantees are required to provide HIV medical
care services that can include outpatient care, HIV counseling,
testing, and referral, medical evaluation and clinical care, and
referrals to other health services. These programs also provide
services to improve the likelihood that undiagnosed individuals will be
identified and connected to care, such as outreach services to
individuals who are at risk of contracting HIV, patient education
materials, translation services, patient transportation to medical
services, and outreach to educate individuals on the benefits of early
intervention.
HRSA and CDC are currently collaborating on a clinic-based research
study, "Increasing Retention in Care among Patients Being Treated for
HIV Infection." The study is designed to develop, implement, and test
the efficacy of an intervention intended to increase appointment
attendance among individuals at risk of missing scheduled appointments
in HIV clinics.
In addition to CDC and HRSA initiatives, officials we interviewed told
us that state and local health departments have implemented their own
initiatives to connect HIV-positive individuals to care. Officials from
six states and five local health departments we spoke with stated that
their departments use case management to assist HIV-positive
individuals through the process of making appointments and to help
address other needs of the individuals. For example, officials from one
of these health departments explained that some case managers sign up
qualified individuals for an AIDS Drug Assistance Program and others
assist with locating housing or with substance abuse issues, which can
also be barriers to staying in care. Case managers make sure
individuals are staying in care by finding patients who have missed
appointments or who providers have been unable to contact. In addition,
officials from one state and four local health departments we spoke
with told us that their departments use mental health professionals and
officials from one state and three local health departments told us
that their departments use substance abuse professionals to connect
individuals to care, since individuals who need these services are at a
high risk of dropping out of care. Officials from two health
departments said that their departments use counseling and officials
from one health department said that partner counseling is conducted
when an individual is diagnosed with HIV.
Agency Comments:
HHS provided technical comments on a draft of the report, which we
incorporated as appropriate.
We are sending copies of this report to the Secretary of Health and
Human Services. The report will be available at no charge on GAO's Web
site at [hyperlink, http://www.gao.gov].
If you or your staffs have any questions, please contact me at (202)
512-7114 or crossem@gao.gov. Contact points for our Offices of
Congressional Relations and Public Affairs may found on the last page
of this report. Other staff who made major contributions to this report
are listed in appendix IV.
Signed by:
Marcia Crosse:
Director, Health Care:
[End of section]
Appendix I: Information on Transitioning Prisoners with HIV to Care
Upon Their Release:
U.S. federal prisons have become a principal screening and treatment
venue for thousands of individuals who are at high risk for human
immunodeficiency virus (HIV) or who have HIV.[Footnote 76] According to
a 2008 report by the Bureau of Justice Statistics, the overall rate of
estimated confirmed acquired immune deficiency syndrome (AIDS) cases
among the prison population (.46 percent) was more than 2.5 times the
rate of the general U.S. population at the end of calendar year
2006.[Footnote 77] The Bureau of Justice Statistics also reported that
1.6 percent of male inmates and 2.4 percent of female inmates in state
and federal prisons were known to be HIV positive. To ensure that
infected individuals are aware of their HIV-positive status and to
ensure that they receive care while in prison, 21 states tested all
inmates for HIV at admission or at some point during their
incarceration. Forty-seven states and all federal prisons tested
inmates if they had HIV-related symptoms or if they requested an HIV
test.
The Ryan White Comprehensive AIDS Resources Emergency Act of 1990 (CARE
Act) was enacted to address the needs of jurisdictions, health care
providers, and people with HIV and their family members.[Footnote 78]
CARE Act programs have been reauthorized three times (1996, 2000, and
2006) and are scheduled to be reauthorized again in 2009.[Footnote 79]
The CARE Act Amendments of 2000 required the Health Resources and
Services Administration (HRSA) to consult with the Department of
Justice and others to develop a plan for the medical case management
and provision of support services to individuals with HIV when they are
released from the custody of federal and state prisons. The plan was to
be submitted to Congress no later than 2 years after the date of
enactment of the CARE Act Amendments of 2000.
You asked us to review the implementation status of the plan and to
determine the extent of any continued coordination between HRSA and the
Department of Justice to transition prisoners with HIV to CARE Act
programs. However, HRSA officials told us that they did not create this
plan or coordinate with the Department of Justice to create this plan.
Additionally, the requirement for this plan was eliminated by the 2006
Ryan White Treatment Modernization Act. We are therefore providing
information related to other steps that HRSA has taken to address the
provision of HIV prevention and care for incarcerated persons with HIV
transitioning back to the community and into CARE Act funded programs.
Additionally, we provide information on steps taken by the Centers for
Disease Control and Prevention (CDC) and states to address this issue.
[Footnote 80]
To provide information related to the steps that CDC and HRSA have
taken to address the provision of HIV prevention and care for
incarcerated persons, we interviewed CDC and HRSA officials. We also
interviewed officials from nine state health departments about their
programs for incarcerated persons with HIV transitioning back to the
community and into CARE Act-funded programs, and the limitations of
these programs.[Footnote 81] From these nine state health departments,
officials from eight states provided responses about their programs.
The remaining state did not have a transition program in place. Our
sample is not generalizable to all state and local health departments.
Background:
The U.S. prison system has been the focus of many studies on HIV
testing for prisoners and care for those with HIV while in prison and
upon their release. Studies have been conducted to determine the number
of individuals who are accessing HIV testing and treatment for the
first time upon their incarceration. Studies have also been conducted
to evaluate how infected prisoners fare in their HIV treatment upon
release from prison, as inmates often encounter social and economic
changes including the need to secure employment and housing, establish
connections with family, and manage mental health and substance abuse
disorders. For example, one recent study of the Texas state prison
system published in the Journal of the American Medical Association
discussed an evaluation of the proportion of infected individuals who
filled a highly active antiretroviral therapy (HAART) prescription
within 10, 30, and 60 days after their release from prison,
respectively.[Footnote 82] The study found that 90 percent of recently
released inmates did not fill a prescription for HAART therapy soon
enough to avoid a treatment interruption (10 days) and more than 80
percent did not fill a prescription within 30 days of release. Only 30
percent of those released filled a prescription within 60 days.
Individuals on parole and those who received assistance in completing a
Texas AIDS Drug Assistance Program application were more likely to fill
a prescription within 30 and 60 days.[Footnote 83] Because those who
discontinue HAART are at increased risk of developing a higher viral
burden (resulting in greater infectiousness and higher levels of drug
resistance), it is important for public health that HIV-positive
prisoners continue their HAART treatment upon release from prison. CDC,
HRSA, and several states we interviewed have implemented programs to
aid in the transition of HIV-positive persons from prison to the
community with emphasis on their continued care and treatment.
CDC, HRSA, and States Have Taken Steps to Address the Provision of HIV
Prevention and Care for Prisoners with HIV Upon Their Release:
CDC and HRSA have funded demonstration projects to address HIV
prevention and care for prisoners with HIV upon their release from
incarceration. Selected state health departments and their respective
state departments of corrections have coordinated to help HIV-positive
prisoners in their transition back to the community.
CDC and HRSA Have Funded Demonstration Projects to Address HIV
Prevention and Care for Prisoners with HIV and Provided Guidance to
States Regarding HIV-Related Programs:
CDC and HRSA have funded various projects to address the provision of
HIV prevention and care for prisoners with HIV upon their release from
incarceration. CDC and HRSA have also provided guidance to states
regarding HIV-related programs. The list below describes the projects
and guidance.
* CDC and HRSA jointly funded a national corrections demonstration
project in seven states (California, Florida, Georgia, Illinois,
Massachusetts, New Jersey, and New York). This demonstration project
was funded from 1999 to 2004. The goal of the demonstration project was
to increase access to health care and improve the health status of
incarcerated and at-risk populations disproportionately affected by the
HIV epidemic. The "HIV/AIDS Intervention, Prevention, and Community of
Care Demonstration Project for Incarcerated Individuals within
Correctional Settings and the Community" involved jail, prison, and
juvenile detention settings. The project targeted inmates with HIV, but
also those with hepatitis B and hepatitis C, tuberculosis, substance
abuse, and sexually transmitted diseases (STD). According to a HRSA
report, the project was able to enhance existing programs in
facilities, and develop new programs both within facilities and outside
of them.[Footnote 84] Many states integrated lessons learned through
the project at varying levels throughout their state.
* CDC funded Project START to develop an HIV, STD, and hepatitis
prevention program for young men aged 18-29 who were leaving prison in
2001. The goal of this project was to test the effectiveness of the
Project START interventions in reducing sexually risky behaviors for
prisoners transitioning back to the community. State prisons in
California, Mississippi, Rhode Island, and Wisconsin were selected. A
study describing the Project START interventions indicated a multi-
session community re-entry intervention can lead to a reduction in
sexually risky behavior in recently released prisoners.[Footnote 85]
* CDC funded a demonstration project at multiple sites in four states
(Florida, Louisiana, New York, and Wisconsin) where prisoners in short-
term jail facilities were offered routine rapid initial testing and
appropriate referral to care, treatment, and prevention services within
the facility or outside of it. From December 2003 through June 2004,
more than 5,000 persons had been tested for HIV, and according to a CDC
report, 108 (2.1 percent) had received confirmed positive results.
[Footnote 86]
* CDC officials told us that CDC is currently completing three pilot
studies which began in September 2006. These studies were conducted to
develop interventions for HIV-positive persons being released from
several prisons or halfway houses in three states: California
(prisons), Connecticut (prisons), and Pennsylvania (halfway houses).
* CDC officials explained that CDC has established a Corrections
Workgroup within the National Center for HIV/AIDS, Viral Hepatitis,
STD, and Tuberculosis Prevention. In March of 2009, the workgroup
hosted a Corrections and Public Health Consultation: ìExpanding the
Reach of Prevention.
* According to a Special Projects of National Significance program
update, HRSA's "Enhancing Linkages to HIV Primary Care and Services in
Jail Settings" initiative seeks to develop innovative methods for
providing care and treatment to HIV-positive inmates who are reentering
the community.[Footnote 87] This 4-year project, which began in
September 2007, is different from the "HIV/AIDS Intervention,
Prevention, and Community of Care Demonstration Project for
Incarcerated Individuals within Correctional Settings and in the
Community" in that it focuses entirely on jails. HRSA defines jails as
locally operated facilities whose inmates are typically sentenced for 1
year or less or are awaiting trial or sentencing following trial. Under
the initiative, HRSA has awarded grants to 10 demonstration projects in
the following areas: Atlanta, Georgia; Chester, Pennsylvania; Chicago,
Illinois; Cleveland, Ohio; Columbia, South Carolina; New Haven,
Connecticut; New York, New York; Philadelphia, Pennsylvania;
Providence, Rhode Island; and Springfield, Massachusetts.
Besides funding demonstration projects and creating workgroups, HRSA
and CDC have issued guidance to states. HRSA issued guidance in
September 2007 explaining allowable expenditures under CARE Act
programs for incarcerated persons.[Footnote 88] The guidance states
that expenditures under the CARE Act are only allowable to help
prisoners achieve immediate connections to community-based care and
treatment services upon release from custody, where no other services
exist for these prisoners, or where these services are not the
responsibility of the correctional system. The guidance provides for
the use of funds for transitional social services including medical
case management and social support services. CARE Act grantees can
provide these transitional primary services by delivering the services
directly or through the use of contracts. Grantees must also develop a
mechanism to report to HRSA on the use of funds to provide transitional
social services in correctional settings. In 2009, CDC issued HIV
Testing Implementation Guidance for Correctional Settings.[Footnote 89]
This guidance recommended routine opt-out HIV testing for correctional
settings and made suggestions for how HIV services should be provided
and how prisoners should be linked to services.[Footnote 90] The
guidance also addressed challenges that may arise for prison
administrators and health care providers who wish to implement the
guidelines in their correctional facilities.
Selected State Health Departments Have Coordinated with Their
Respective State Departments of Corrections on HIV-Positive Prisoner
Transition Programs:
Of the eight state health departments in our review that had HIV
transition programs in place, several have implemented programs that
coordinate with the state's department of corrections to provide
prisoners with support services to help them in their transition back
to the community. We provide examples of three of these programs below.
* Officials from one state health department said that their department
uses CARE Act and state funding to provide a prerelease program that
uses the state's department of corrections prerelease planners to make
sure that prisoners with HIV are linked to care. Prisoners meet with
their prerelease planner 60-90 days prior to release, and the planner
links them to care services, has them sign up for the AIDS Drug
Assistance Program and Medicaid, and follows up with them after their
release to ensure that they remain in care. Additionally, the
department of corrections provides 30 days of medications to prisoners
upon release. The state department of health has been working with the
department of corrections to help them transition HIV-positive
prisoners for the past 10 years.
* According to officials from another state health department, their
department uses state funds to provide transitional case management for
HIV prisoners who are transitioning back into the community.
Specialized medical case managers meet and counsel prisoners with HIV
who are within 6 months of being released. Within 90 days of release,
the prisoner and the medical case manager may meet several times to
arrange housing, complete a Medicaid application, obtain referrals to
HIV specialists and to the AIDS Drug Assistance Program, and provide
the prisoner with assistance in obtaining a state identification card.
Case managers will also work with the prisoner for 3 months after
release so that the prisoner is stable in the community. After 90 days,
the person can be transferred into another case management program or
they can drop out. The client is kept on the AIDS Drug Assistance
Program if they are not disabled.
* According to officials from a third state health department, their
department uses "Project Bridge," a nationally recognized program to
transition prisoners back into the community and into CARE Act
programs. The Project Bridge program provides transition services to
prisoners. Ninety-seven percent of the Project Bridge participants
receive medical care during the first month of their release from
prison. The state attributes the success of this program to the
productive relationship between the state health department and the
department of corrections. Project Bridge participants are involved in
discharge planning with case managers starting 6 months before their
discharge. Participants then receive intense case management for
approximately 18-24 months after their release. During this period they
are connected with medical and social services. According to state
officials, the program has also been effective in decreasing recidivism
rates.
Officials we interviewed from state health departments described
several limitations to their departments' programs. One state health
department official explained that their department does not have the
staff to coordinate services for all of the state's 110 jails.
Officials from two other state health departments explained that state
budget cuts are threatening the continuation of their departments'
prisoner transition programs. One state health department official
explained that finding the transitioning HIV-positive prisoner housing
in the community is often very difficult. The lack of available housing
has impacted their HIV care because they are so focused on finding
housing that they are unable to focus on taking their medication or
going to medical appointments. One state health department official
explained that their department's prisoners with HIV are sometimes not
interested in being connected to care in the community. Another state
health department official explained that the lack of funding for
prisoner transition programs is a limitation of their program.
[End of section]
Appendix II: Part A Grantees' Living HIV/AIDS Cases Used by HRSA to
Determine Fiscal Year 2009 CARE Act Base Grants:
Part A Grantee: Atlanta, Ga.;
HIV: 6,260;
AIDS: 11,571;
Total: 17,831.
Part A Grantee: Austin, Tex.;
HIV: 1,630;
AIDS: 2,458;
Total: 4,088.
Part A Grantee: Baltimore, Md.;
HIV: 11,901;
AIDS: 9,488;
Total: 21,389.
Part A Grantee: Baton Rouge, La.;
HIV: 1,867;
AIDS: 1,888;
Total: 3,755.
Part A Grantee: Bergen-Passaic, N.J.;
HIV: 1,858;
AIDS: 2,190;
Total: 4,048.
Part A Grantee: Boston, Mass.;
HIV: 6,270;
AIDS: 7,748;
Total: 14,018.
Part A Grantee: Caguas, P.R.;
HIV: 483;
AIDS: 761;
Total: 1,244.
Part A Grantee: Charlotte-Gastonia, N.C.-S.C.;
HIV: 3,216;
AIDS: 1,809;
Total: 5,025.
Part A Grantee: Chicago, Ill.;
HIV: 13,166;
AIDS: 13,945;
Total: 27,111.
Part A Grantee: Cleveland, Ohio;
HIV: 2,020;
AIDS: 2,158;
Total: 4,178.
Part A Grantee: Dallas, Tex.;
HIV: 6,589;
AIDS: 8,346;
Total: 14,935.
Part A Grantee: Denver, Colo.;
HIV: 4,721;
AIDS: 3,232;
Total: 7,953.
Part A Grantee: Detroit, Mich.;
HIV: 3,944;
AIDS: 4,635;
Total: 8,579.
Part A Grantee: Dutchess County, N.Y.;
HIV: 452;
AIDS: 803;
Total: 1,255.
Part A Grantee: Fort Lauderdale, Fla.;
HIV: 6,730;
AIDS: 7,724;
Total: 14,454.
Part A Grantee: Fort Worth, Tex.;
HIV: 1,681;
AIDS: 2,238;
Total: 3,919.
Part A Grantee: Hartford, Conn.;
HIV: 1,085;
AIDS: 2,565;
Total: 3,650.
Part A Grantee: Houston, Tex.;
HIV: 8,047;
AIDS: 10,809;
Total: 18,856.
Part A Grantee: Indianapolis, Ind.;
HIV: 1,825;
AIDS: 1,990;
Total: 3,815.
Part A Grantee: Jacksonville, Fla.;
HIV: 2,169;
AIDS: 2,970;
Total: 5,139.
Part A Grantee: Jersey City, N.J.;
HIV: 2,166;
AIDS: 2,528;
Total: 4,694.
Part A Grantee: Kansas City, Mo.;
HIV: 1,953;
AIDS: 2,390;
Total: 4,343.
Part A Grantee: Las Vegas, Nev.;
HIV: 2,968;
AIDS: 2,763;
Total: 5,731.
Part A Grantee: Los Angeles, Calif.;
HIV: 15,106;
AIDS: 22,431;
Total: 37,537.
Part A Grantee: Memphis, Tenn.;
HIV: 3,421;
AIDS: 2,688;
Total: 6,109.
Part A Grantee: Miami, Fla.;
HIV: 10,877;
AIDS: 12,988;
Total: 23,865.
Part A Grantee: Middlesex-Somerset-Hunterdon, N.J.;
HIV: 1,212;
AIDS: 1,442;
Total: 2,654.
Part A Grantee: Minneapolis-St. Paul, Minn.;
HIV: 2,964;
AIDS: 2,173;
Total: 5,137.
Part A Grantee: Nashville, Tenn.;
HIV: 2,036;
AIDS: 2,215;
Total: 4,251.
Part A Grantee: Nassau-Suffolk, N.Y.;
HIV: 1,877;
AIDS: 3,621;
Total: 5,498.
Part A Grantee: New Haven, Conn.;
HIV: 1,813;
AIDS: 4,200;
Total: 6,013.
Part A Grantee: New Orleans, La.;
HIV: 3,397;
AIDS: 4,006;
Total: 7,403.
Part A Grantee: New York, N.Y.;
HIV: 35,856;
AIDS: 59,700;
Total: 95,556.
Part A Grantee: Newark, N.J.;
HIV: 6,237;
AIDS: 6,669;
Total: 12,906.
Part A Grantee: Norfolk, Va.;
HIV: 3,329;
AIDS: 2,353;
Total: 5,682.
Part A Grantee: Oakland, Calif.;
HIV: 2,431;
AIDS: 4,173;
Total: 6,604.
Part A Grantee: Orange County, Calif.;
HIV: 2,370;
AIDS: 3,662;
Total: 6,032.
Part A Grantee: Orlando, Fla.;
HIV: 3,953;
AIDS: 4,550;
Total: 8,503.
Part A Grantee: Philadelphia, Pa.;
HIV: 9,070;
AIDS: 13,596;
Total: 22,666.
Part A Grantee: Phoenix, Ariz.;
HIV: 4,528;
AIDS: 3,775;
Total: 8,303.
Part A Grantee: Ponce, P.R.;
HIV: 627;
AIDS: 1,371;
Total: 1,998.
Part A Grantee: Portland, Ore.;
HIV: 1,508;
AIDS: 2,339;
Total: 3,847.
Part A Grantee: Riverside-San Bernardino, Calif.;
HIV: 3,167;
AIDS: 4,686;
Total: 7,853.
Part A Grantee: Sacramento, Calif.;
HIV: 970;
AIDS: 1,699;
Total: 2,669.
Part A Grantee: San Antonio, Tex.;
HIV: 1,711;
AIDS: 2,568;
Total: 4,279.
Part A Grantee: San Diego, Calif.;
HIV: 5,161;
AIDS: 6,403;
Total: 11,564.
Part A Grantee: San Francisco, Calif.;
HIV: 6,641;
AIDS: 10,532;
Total: 17,173.
Part A Grantee: San Jose, Calif.;
HIV: 1,102;
AIDS: 1,816;
Total: 2,918.
Part A Grantee: San Juan, P.R.;
HIV: 4,029;
AIDS: 7,023;
Total: 11,052.
Part A Grantee: Santa Rosa, Calif.;
HIV: 415;
AIDS: 844;
Total: 1,259.
Part A Grantee: Seattle, Wash.;
HIV: 3,099;
AIDS: 3,914;
Total: 7,013.
Part A Grantee: St. Louis, Mo.;
HIV: 2,897;
AIDS: 3,099;
Total: 5,996.
Part A Grantee: Tampa-St. Petersburg, Fla.;
HIV: 3,975;
AIDS: 5,264;
Total: 9,239.
Part A Grantee: Vineland-Millville-Bridgeton, N.J.;
HIV: 375;
AIDS: 461;
Total: 836.
Part A Grantee: Washington, D.C.;
HIV: 12,678;
AIDS: 16,350;
Total: 29,028.
Part A Grantee: West Palm Beach, Fla.;
HIV: 2,881;
AIDS: 4,513;
Total: 7,394.
Part A Grantee: Total;
HIV: 254,714;
AIDS: 334,133;
Total: 588,847.
Source: HRSA.
Note: Fourteen Part A grantees--Baltimore, Md.; Boston, Mass.; Chicago,
Ill.; Los Angeles, Calif.; Oakland, Calif.; Orange County, Calif.;
Portland, Ore.; Riverside-San Bernardino, Calif.; Sacramento, Calif.;
San Diego, Calif.; San Francisco, Calif.; San Jose, Calif.; Santa Rosa,
Calif.; and Washington, D.C.--submitted code-based HIV case counts to
HRSA for the fiscal year 2009 funding formula and were assessed a 5
percent reduction in their HIV case counts in accordance with the CARE
Act. For more information, see GAO-09-894, 8-10.
[End of table]
[End of section]
Appendix III: Part B Grantees' Living HIV/AIDS Cases Used by HRSA to
Determine Fiscal Year 2009 CARE Act Base Grants:
Part B Grantee: Alabama;
HIV: 5,702;
AIDS: 4,164;
Total: 9,866.
Part B Grantee: Alaska;
HIV: 278;
AIDS: 340;
Total: 618.
Part B Grantee: Arizona;
HIV: 5,949;
AIDS: 5,180;
Total: 11,129.
Part B Grantee: Arkansas;
HIV: 2,388;
AIDS: 2,296;
Total: 4,684.
Part B Grantee: California;
HIV: 41,730;
AIDS: 63,187;
Total: 104,917.
Part B Grantee: Colorado;
HIV: 5,974;
AIDS: 4,313;
Total: 10,287.
Part B Grantee: Connecticut;
HIV: 3,215;
AIDS: 7,403;
Total: 10,618.
Part B Grantee: Delaware;
HIV: 1,259;
AIDS: 1,813;
Total: 3,072.
Part B Grantee: District of Columbia;
HIV: 6,575;
AIDS: 8,559;
Total: 15,134.
Part B Grantee: Florida;
HIV: 38,303;
AIDS: 49,055;
Total: 87,358.
Part B Grantee: Georgia;
HIV: 10,883;
AIDS: 17,447;
Total: 28,330.
Part B Grantee: Hawaii;
HIV: 845;
AIDS: 1,251;
Total: 2,096.
Part B Grantee: Idaho;
HIV: 356;
AIDS: 311;
Total: 667.
Part B Grantee: Illinois;
HIV: 15,447;
AIDS: 16,513;
Total: 31,960.
Part B Grantee: Indiana;
HIV: 3,953;
AIDS: 4,218;
Total: 8,171.
Part B Grantee: Iowa;
HIV: 637;
AIDS: 912;
Total: 1,549.
Part B Grantee: Kansas;
HIV: 1,260;
AIDS: 1,369;
Total: 2,629.
Part B Grantee: Kentucky;
HIV: 1,635;
AIDS: 2,788;
Total: 4,423.
Part B Grantee: Louisiana;
HIV: 7,663;
AIDS: 8,522;
Total: 16,185.
Part B Grantee: Maine;
HIV: 421;
AIDS: 534;
Total: 955.
Part B Grantee: Maryland;
HIV: 15,793;
AIDS: 15,029;
Total: 30,822.
Part B Grantee: Massachusetts;
HIV: 7,258;
AIDS: 8,651;
Total: 15,909.
Part B Grantee: Michigan; HIV: 6,177; AIDS: 6,900; Total: 13,077.
Part B Grantee: Minnesota;
HIV: 3,370;
AIDS: 2,457;
Total: 5,827.
Part B Grantee: Mississippi;
HIV: 4,575;
AIDS: 3,570;
Total: 8,145.
Part B Grantee: Missouri;
HIV: 5,061;
AIDS: 5,751;
Total: 10,812.
Part B Grantee: Montana;
HIV: 120;
AIDS: 205;
Total: 325.
Part B Grantee: Nebraska;
HIV: 680;
AIDS: 784;
Total: 1,464.
Part B Grantee: Nevada;
HIV: 3,447;
AIDS: 3,214;
Total: 6,661.
Part B Grantee: New Hampshire;
HIV: 480;
AIDS: 587;
Total: 1,067.
Part B Grantee: New Jersey;
HIV: 15,851;
AIDS: 17,564;
Total: 33,415.
Part B Grantee: New Mexico;
HIV: 934;
AIDS: 1,330;
Total: 2,264.
Part B Grantee: New York;
HIV: 44,973;
AIDS: 73,879;
Total: 118,852.
Part B Grantee: North Carolina;
HIV: 12,812;
AIDS: 8,718;
Total: 21,530.
Part B Grantee: North Dakota;
HIV: 83;
AIDS: 78;
Total: 161.
Part B Grantee: Ohio;
HIV: 8,274;
AIDS: 7,380;
Total: 15,654.
Part B Grantee: Oklahoma;
HIV: 2,259;
AIDS: 2,333;
Total: 4,592.
Part B Grantee: Oregon;
HIV: 1,746;
AIDS: 2,938;
Total: 4,684.
Part B Grantee: Pennsylvania;
HIV: 12,401;
AIDS: 18,647;
Total: 31,048.
Part B Grantee: Puerto Rico;
HIV: 6,519;
AIDS: 11,335;
Total: 17,854.
Part B Grantee: Rhode Island;
HIV: 985;
AIDS: 1,346;
Total: 2,331.
Part B Grantee: South Carolina;
HIV: 6,591;
AIDS: 7,604;
Total: 14,195.
Part B Grantee: South Dakota;
HIV: 209;
AIDS: 144;
Total: 353.
Part B Grantee: Tennessee;
HIV: 7,032;
AIDS: 6,822;
Total: 13,854.
Part B Grantee: Texas;
HIV: 25,894;
AIDS: 34,734;
Total: 60,628.
Part B Grantee: Utah;
HIV: 932;
AIDS: 1,206;
Total: 2,138.
Part B Grantee: Vermont;
HIV: 206;
AIDS: 236;
Total: 442.
Part B Grantee: Virginia;
HIV: 10,092;
AIDS: 8,573;
Total: 18,665.
Part B Grantee: Washington;
HIV: 4,420;
AIDS: 5,734;
Total: 10,154.
Part B Grantee: West Virginia;
HIV: 662;
AIDS: 786;
Total: 1,448.
Part B Grantee: Wisconsin;
HIV: 2,418;
AIDS: 2,283;
Total: 4,701.
Part B Grantee: Wyoming;
HIV: 98;
AIDS: 109;
Total: 207.
Part B Grantee: American Samoa;
HIV: 2;
AIDS: 1;
Total: 3.
Part B Grantee: Commonwealth of the Northern Mariana Islands;
HIV: 3;
AIDS: 3;
Total: 6.
Part B Grantee: Federated States of Micronesia;
HIV: 8;
AIDS: 0;
Total: 8.
Part B Grantee: Guam;
HIV: 55;
AIDS: 35;
Total: 90.
Part B Grantee: Palau;
HIV: 0;
AIDS: 0;
Total: 0.
Part B Grantee: Republic of the Marshall Islands;
HIV: 0;
AIDS: 1;
Total: 1.
Part B Grantee: U.S. Virgin Islands;
HIV: 235;
AIDS: 335;
Total: 570.
Part B Grantee: Total;
HIV: 367,128;
AIDS: 461,477;
Total: 828,605.
Source: HRSA.
Note: Ten Part B grantees--California, the District of Columbia,
Hawaii, Illinois, Maryland, Massachusetts, Oregon, Rhode Island,
Vermont, and the Federated States of Micronesia--submitted code-based
HIV case counts to HRSA for the fiscal year 2009 funding formula and
were assessed a 5 percent reduction in their HIV case counts in
accordance with the CARE Act. For more information, see GAO-09-894, 8-
10.
[End of table]
[End of section]
Appendix IV: GAO Contact and Staff Acknowledgments:
GAO Contact:
Marcia Crosse, (202) 512-7114 or crossem@gao.gov:
Acknowledgments:
In addition to the contact above, Thomas Conahan, Assistant Director;
Robert Copeland, Assistant Director; Leonard Brown; Romonda McKinney
Bumpus; Cathleen Hamann; Sarah Resavy; Rachel Svoboda; and Jennifer
Whitworth made key contributions to this report.
[End of section]
Footnotes:
[1] HIV is the virus that causes AIDS. In this report, except where
noted, we use the term HIV to refer to HIV disease, inclusive of cases
that have and have not progressed to AIDS. When we use the term AIDS
alone it refers exclusively to HIV disease that has progressed to AIDS.
[2] CDC estimates HIV case counts based on information it receives from
states, the District of Columbia, and the U.S. territories and
associated jurisdictions.
[3] For the purposes of this report, we use the term setting to refer
to a type of facility, for example, emergency rooms. Settings can
include multiple sites. We use the term site to refer to an individual
facility, for example, a specific hospital's emergency room.
[4] Community-based organizations are organizations that provide social
services at the local level.
[5] NHIS, which has been conducted since 1957, collects information on
a broad range of health topics through personal household interviews.
Information on HIV testing has been included in the NHIS since 1997.
The survey is one of the major data collection programs of the National
Center for Health Statistics, which is part of CDC.
[6] A cooperative agreement is a mechanism used to provide financial
support when substantial interaction is expected between a federal
agency and a state, local government, or other funded entity. In this
report, except where noted, we use the term state to include all 50
states, the District of Columbia, and the U.S. territories and
associated jurisdictions.
[7] Surveillance is an ongoing, systematic collection, analysis,
interpretation, and dissemination of data regarding a health-related
event. CDC's HIV surveillance system observes, records, and
disseminates reports about cases of HIV and AIDS.
[8] CDC has also issued HIV testing recommendations for non-heath care
settings, such as community-based organizations. CDC is currently
working on revising these recommendations, which were last updated in
2001. For more information on the 2001 recommendations, see CDC,
"Revised guidelines for HIV counseling, testing, and referral,"
Morbidity and Mortality Weekly Report, Vol. 50, No. RR-19 (2001).
[9] These CDC recommendations apply to adults and adolescents ages 13-
64 and specify that routine HIV testing should be done on an opt-out
basis. Opt-out testing is a type of routine testing where a patient is
notified that testing will be performed unless the patient elects to
decline testing and consent is inferred unless the patient declines.
[10] CDC defines high prevalence of HIV as greater than 1 percent.
However, CDC now recommends conducting routine HIV testing unless the
prevalence of undiagnosed HIV infection has been shown to be less than
0.1 percent.
[11] According to CDC, informed consent is a process of communication
between a patient and a health care provider through which an informed
patient can choose whether to undergo HIV testing or decline to do so.
CDC defines counseling as a process of assessing risk, recognizing
specific behaviors that increase the risk of acquiring or transmitting
HIV, and developing a plan to reduce risks.
[12] For more information on this study see, A. Mahajan, et al.,
"Consistency of State Statutes with the Centers for Disease Control and
Prevention HIV Testing Recommendations for Health Care Settings,"
Annals of Internal Medicine, Vol. 150, No. 4 (2009). In addition, the
National HIV/AIDS Clinicians' Consultation Center continuously revises
and releases an online Compendium of State HIV Testing Laws. See
[hyperlink, http://www.nccc.ucsf.edu/StateLaws/Index.html].
[13] Pub. L. No. 101-381, 104 Stat. 576 (codified as amended at 42
U.S.C. §§ 300ff through 300ff-121). The 1990 CARE Act added title XXVI
to the Public Health Service Act. Unless otherwise indicated,
references to the CARE Act are to the current title XXVI.
[14] Pub. L. No. 106-345, § 205(a)(2), 114 Stat. 1319, 1332 (codified
at 42 U.S.C. § 300ff-27(b)(2)-(3)(A)).
[15] See 42 U.S.C. § 300ff-81.
[16] Federal funding for HIV testing can come from sources other than
HIV prevention funding, such as Medicaid reimbursement. Medicaid is a
joint federal-state health care financing program for certain
categories of low-income individuals. However, for this report, we
focus exclusively on how much of CDC's HIV prevention funding is spent
on testing. We focus on CDC because the agency spent more than 85
percent of the nearly $900 million that the federal government spent on
domestic HIV prevention in fiscal year 2008.
[17] For additional information on the implementation of the CARE Act
see GAO, Ryan White CARE Act: Effects of Certain Funding Provisions on
Grant Awards, GAO-09-894 (Washington, D.C.: Sept. 18, 2009).
[18] We interviewed officials from nine state health departments and
five local health departments. We interviewed officials from the
following state health departments: California, Florida, Hawaii,
Indiana, Missouri, North Carolina, Pennsylvania, Rhode Island, and
Washington. We interviewed officials from the following local health
departments: Harris County, Tex.; Maricopa County, Ariz.; Memphis,
Tenn.; New York, N.Y.; and Sacramento County, Calif.
[19] The Henry J. Kaiser Family Foundation, Survey Brief: Views and
Experiences with HIV Testing in the U.S. (Menlo Park, CA: June 2009).
[20] Rapid tests also do not require any special equipment and thus can
be performed outside of health care settings. Rapid test results
require further testing to confirm a positive test result.
[21] HAART means any combination of three or more antiretroviral drugs.
While HAART has greatly improved survival rates of individuals living
with HIV, there is currently no cure for the disease.
[22] G. Marks, N. Crepaz, and R.S. Janssen, "Estimating Sexual
Transmission of HIV from Persons Aware and Unaware that they are
Infected with the Virus in the USA," AIDS, Vol. 20, No. 10 (2006).
[23] CDC, "Missed Opportunities for Earlier Diagnosis of HIV Infection--
South Carolina, 1997-2005," Morbidity and Mortality Weekly Report, Vol.
55, No. 47 (2006).
[24] Medicare is the federal health care financing program for elderly
and certain disabled individuals. Medicaid is a joint federal-state
health care financing program for certain categories of low-income
individuals.
[25] According to CDC, many health care providers have since adopted
these recommendations leading to increased prenatal screening and a 95
percent decline in perinatally acquired AIDS cases.
[26] CDC, "Revised Recommendations for HIV Testing of Adults,
Adolescents, and Pregnant Women in Health-Care Settings," Morbidity and
Mortality Weekly Report, Vol. 55, No. RR-14 (September 2006). In this
report we refer to these recommendations as CDC's 2006 routine HIV
testing recommendations.
[27] CDC specified that if routine testing yields a prevalence of
undiagnosed HIV infection of less than 0.1 percent in a health care
setting, routine testing is no longer necessary.
[28] The 2006 recommendations also included updated recommendations
regarding HIV testing for pregnant women. However, for the purposes of
this report we focus on HIV testing for the general population.
[29] CD4 cells help the body fight infection and are susceptible to
attack by the HIV virus. A CD4 test is used to determine the number of
CD4 cells in the blood to assess the functioning of the immune system.
An HIV-positive individual will have a lower CD4 cell count than an
individual without HIV. A viral load test measures the amount of HIV in
the blood.
[30] In name-based systems, cases are collected by name, while in a
code-based system cases are collected using a code identifier. Even
though all states collect AIDS cases by name, some states had to
transition their reporting systems for cases of HIV that have not
progressed to AIDS from code to name. Due to the differences in
reporting and CDC's use of these data, when we refer to name-based HIV
reporting systems or the data collected through those systems, we are
referring to cases of HIV that have not progressed to AIDS.
[31] The 34 states and 5 territories and associated jurisdictions that
had mature name-based HIV reporting systems were: Alabama, Alaska,
Arizona, Arkansas, Colorado, Florida, Georgia, Idaho, Indiana, Iowa,
Kansas, Louisiana, Michigan, Minnesota, Mississippi, Missouri,
Nebraska, Nevada, New Jersey, New Mexico, New York, North Carolina,
North Dakota, Ohio, Oklahoma, South Carolina, South Dakota, Tennessee,
Texas, Utah, Virginia, West Virginia, Wisconsin, Wyoming, American
Samoa, the Commonwealth of the Northern Mariana Islands, the
Commonwealth of Puerto Rico, Guam, and the U.S. Virgin Islands. See
CDC, HIV/AIDS Surveillance Report, 2007, Vol. 19 (2009).
[32] Most other Part A and Part B grants are distributed competitively.
For more information on Part A and Part B grants, see [hyperlink,
http://www.gao.gov/products/GAO-09-894], 2-4.
[33] The CARE Act also allows Part A and B grantees some flexibility to
use funding for HIV testing through early intervention services.
[34] There is also a Part D, which provides for grants to private
nonprofit and public entities for family-centered comprehensive care to
children, youth, and women and their families, and a Part E, which does
not provide for funding for HIV services, but rather includes
provisions to address various administrative functions.
[35] For purposes of this report, we look only at the unmet need
estimates of states that are reported in their CARE Act Part B grant
applications.
[36] According to HRSA's unmet need framework, an individual diagnosed
with HIV is considered to be in care if there is evidence that the
individual has received a viral load test, CD4 count, or provision of
antiretroviral therapy within a 12-month time frame. Reported CD4 or
viral load tests can be used to determine if an individual has entered
into care because these tests are monitored routinely in the clinical
setting.
[37] Interagency Agreement Numbers: HAB0700301 (HRSA) and ST07-
012.01(CDC), Retaining HIV Positive Patients in Medical Care (August
2008).
[38] The interagency work group included HRSA's HIV/AIDS Bureau; CDC's
Division on HIV/AIDS Prevention; Centers for Medicare & Medicaid
Services; the Substance Abuse and Mental Health Services
Administration's Center for Mental Health Services; the National
Institutes of Health's National Institute on Drug Abuse; the Department
of Housing and Urban Development's Housing Opportunities for Persons
with AIDS; and the National Association of Social Workers.
[39] HHS, Recommendations for Case Management Collaboration and
Coordination in Federally Funded HIV Programs (Washington, D.C.: August
2008). [hyperlink,
http://www.cdcnpin.org/scripts/features/CaseManagement.pdf].
[40] In the context of HIV, case management is a process through which
programs facilitate access to care, stable housing, and support
services for individuals with HIV and their families.
[41] HRSA funds AETCs under Part F of the CARE Act. Specifically, HRSA
provides grants to a network of 11 regional AETCs that conduct training
programs for health care providers treating individuals with HIV. HRSA
oversees AETCs by conducting a number of activities, including
reviewing grantee progress reports, conducting site visits at AETC
locations, and scheduling meetings to discuss AETCs activities.
[42] In addition to the National Network of STD/HIV Prevention Training
Centers and AETCs, other organizations that participate in the Federal
Training Centers Collaboration include the Regional Training Centers
for Family Planning, Addiction Technology Transfer Centers, Viral
Hepatitis Education and Training Projects, and Tuberculosis Regional
Training and Medical Consultation Centers.
[43] The participating agencies held meetings in 2002, 2004, 2006, and
2008.
[44] Interagency Agreement Numbers: HAB0600521 (HRSA) and
07FED705251(CDC), Training and Technical Assistance to Support the
Adoption of CDC's Recommendation for HIV Testing in Health-Care
Settings (August 2007) and Interagency Agreement Numbers: HAB0700403
(HRSA) and 07FED705251-1(CDC), Training and Technical Assistance to
Support the Adoption of CDC's Recommendation for HIV Testing in Health-
Care Settings (August 2008).
[45] CDC plans to hold a new competition for the Expanded HIV Testing
initiative after the first 3-year funding cycle. CDC also plans to
expand the initiative to better meet the needs of the Latino population
and gay and bisexual men.
[46] Pub. L. No. 109-415, § 209, 120 Stat. 2767, 2802-03 (codified at
42 U.S.C. § 300ff-33).
[47] Opt-out testing is a type of routine testing where a patient is
notified that testing will be performed unless the patient elects to
decline testing and consent is inferred unless the patient declines.
[48] Appropriations in 2008 and 2009 limited the amount that could be
made available to any one state to $1 million.
[49] States that received funding for implementing a policy in 2008
could not receive funding for that same policy in 2009. For example, if
a state received funding for implementing voluntary opt-out testing of
patients at STD clinics and substance abuse treatment centers in 2008
it could not receive funding for having implemented this policy in
2009.
[50] Officials from one health department said that they funded routine
HIV testing through the Early Intervention Services portion of their
CARE Act Part A grant.
[51] Under the Expanded HIV Testing initiative, CDC provided funding to
23 health departments in the first year of the initiative and 2 of
these departments did not report data to CDC. Two additional health
departments received funding in the second year of the initiative.
[52] Though the initiative did not reach its goal in the first year,
this could be related to the time it takes states and local areas to
start up routine HIV testing. NASTAD officials we interviewed said that
it takes time for states and local areas to build the capacity to
conduct routine HIV testing, but that once the infrastructure is in
place testing can increase quickly. According to CDC, the number of
tests conducted during the second half of the first year of the
Expanded HIV Testing initiative was more than four times the number
conducted during the first half.
[53] HIV testing is targeted when it is based on an assessment of risk.
[54] CDC, Update on HIV Testing (presentation given at the CDC-HRSA
Advisory Committee meeting, Atlanta, GA: May 2009).
[55] Requiring insurers to reimburse for HIV testing regardless of
primary diagnosis means that plans have to cover HIV testing for
individuals who are asymptomatic and for whom exposure to infection is
uncertain. It also requires plans to cover testing done by an emergency
or urgent care service provider, even if the testing is unrelated to
the reason for the visit.
[56] As a result of this analysis, on September 9, 2009, the Centers
for Medicare & Medicaid Services issued a proposal to cover routine HIV
testing for certain populations.
[57] L. Cheever, et al., "Ensuring Access to Treatment for HIV
Infection," Clinical Infectious Diseases, Vol. 45, No. 4 (2007).
[58] The U.S. Preventive Services Task Force was first convened by the
U.S. Public Health Service in 1984. Since 1998, the Task Force has been
sponsored by HHS' Agency for Healthcare Research and Quality. According
to the Agency for Health Care Research and Quality, the Task Force
conducts rigorous, impartial assessments of the scientific evidence for
the effectiveness of a broad range of clinical preventive services,
including screening, counseling, and preventive medications. Its
recommendations are considered the "gold standard" for clinical
preventive services.
[59] The U.S. Preventive Services Task Force defines increased risk for
HIV infection as reporting one or more individual risk factors or
receiving health care in a high-prevalence or high-risk clinical
setting.
[60] For more information on this study, see A. Mahajan, et al.,
"Consistency of State Statutes with the Centers for Disease Control and
Prevention HIV Testing Recommendations for Health Care Settings,"
Annals of Internal Medicine, Vol. 150, No. 4 (2009).
[61] According to CDC officials, in fiscal year 2008 CDC allocated
approximately $79 million in domestic HIV prevention funding to other
divisions in the agency, including the Division of Adolescent and
School Health, the Division of STD Prevention, the Division of
Reproductive Health, and the Division of TB Elimination. For the
purposes of this report, we focus on the Division of HIV/AIDS
Prevention because it received nearly 90 percent of CDC's HIV
prevention funding.
[62] Other federal agencies have also provided funding for special HIV
testing initiatives. For example, HHS' Office of Population Affairs
provided $10 million to 77 projects in 34 states to expand HIV testing
in family planning projects over 2 years. The Substance Abuse and
Mental Health Services Administration has committed $60 million from
2007-2012 to expand routine HIV testing in 22 states.
[63] CDC officials noted that the settings where HIV diagnoses are
reported can sometimes differ from the settings where individuals test
positive for HIV. Specifically, they said that in the 2007 surveillance
data, individuals who tested positive for HIV in the emergency room
were included in the HIV diagnoses reported for hospital inpatient
settings.
[64] CDC surveillance data on the settings in which HIV-positive
individuals were diagnosed in 2007 are from the 34 states that had
mature name-based HIV reporting systems that year.
[65] CDC surveillance data also exclude states that do not have mature
name-based HIV reporting systems. In 2007, 16 states and the District
of Columbia did not have a mature name-based HIV reporting system,
including some large states such as California and Massachusetts. In
addition, name-based data do not include individuals taking an
anonymous HIV test. As of April 2008, 41 states and 4 territories and
associated jurisdictions offered anonymous testing.
[66] The Supplement to HIV/AIDS Surveillance project was a
collaborative effort between CDC and 19 state and local areas that
conducted cross-sectional interviews with individuals with HIV from
1990 to 2004.
[67] The Medical Monitoring Project is conducted in 23 participating
project areas that are estimated to include over 80 percent of the
total HIV cases in the United States.
[68] Data from the first year of CDC's Expanded HIV Testing initiative
can also provide information on the types of settings where HIV-
positive results occur. For example, these data suggest that HIV
testing in emergency rooms may yield a disproportionate number of
positive results per HIV test conducted. However, data from this
initiative are not generalizable, because the types of settings funded
through the initiative are not representative of the types of settings
where HIV testing is conducted in the United States.
[69] CDC uses a statistical method to calculate these estimates. For
more information on this method, see CDC, "HIV Prevalence Estimates--
United States," 2006, Morbidity and Mortality Weekly Report, Vol. 57,
No. 39 (2008).
[70] These estimates are based on the 33 states with mature
confidential name-based HIV reporting used in CDC's 2005 surveillance
report. These states have had name-based HIV reporting systems in place
since at least 2000. See CDC, "Reported CD4+ T-lymphocyte results for
adults and adolescents with HIV/AIDS--33 states, 2005," HIV/AIDS
Surveillance Supplemental Report, Vol. 11, No. 2 (2005).
[71] According to CDC, not all states require laboratories to report
CD4 and viral load results at all levels. Individuals whose tests are
not reported are included in the number of HIV-positive individuals not
receiving care for HIV because CDC has no indication that theses
individuals are in care. As of December 2008, 26 states, the District
of Columbia, and Puerto Rico required laboratory reporting of all CD4
and viral load test results.
[72] Even though all states are collecting AIDS cases by name, some
states are transitioning their reporting systems for cases of HIV that
have not progressed to AIDS from code-to name-based. Due to the
differences in reporting and CDC's use of these data, when we refer to
name-based HIV reporting systems or the data collected through those
systems, we are referring to cases of HIV that have not progressed to
AIDS. Although all states and territories and associates jurisdictions,
with the exception of the Federated States of Micronesia, Palau, and
the Republic of the Marshall Islands, have switched to a name-based HIV
reporting system, not all systems are mature. Systems are required to
be mature in order to be used in CDC's surveillance estimates. All
systems in which name-based HIV counts are being collected will be
mature by 2012 and case counts will be available in 2014.
[73] CDC officials noted that underreporting of CD4 and viral load test
results may continue to occur under the new data collection software,
and additional study may be required to provide estimates of the number
of diagnosed HIV-positive individuals not receiving care at the state
level.
[74] See GAO, Ryan White CARE Act: Implementation of the New Minority
AIDS Initiative Provisions, [hyperlink,
http://www.gao.gov/products/GAO-09-315] (Washington, D.C.: March 2009),
43-47.
[75] Special Projects of National Significance grants are authorized by
Part F of the CARE Act. These grants fund programs to quickly respond
to emerging needs and programs to develop a standard electronic data
system.
[76] HIV is the virus that causes acquired immune deficiency syndrome
(AIDS). In this report, except where noted, we use the term HIV to
refer to HIV disease, inclusive of cases that have and have not
progressed to AIDS. When we use the term AIDS alone it refers
exclusively to HIV disease that has progressed to AIDS.
[77] Calendar year 2006 data were the most recent data available at the
time of this report. U.S. Department of Justice, Bureau of Justice
Statistics, HIV in Prisons, 2006 (Washington, D.C.: 2008). [hyperlink,
http://www.ojp.usdoj.gov/bjs/pub/htm1/hivp/2006/hivp06.htm].
[78] Pub. L. No. 101-381, 104 Stat. 576 (codified as amended at 42
U.S.C. §§ 300ff through 300ff-121). The 1990 CARE Act added title XXVI
to the Public Health Service Act. Unless otherwise indicated,
references to the CARE Act are to the current title XXVI.
[79] CARE Act programs were previously reauthorized by the Ryan White
CARE Act Amendments of 1996 (Pub. L. No. 104-146, 110 Stat. 1346), the
Ryan White CARE Act Amendments of 2000 (Pub. L. No. 106-345, 114 Stat.
1319), and the Ryan White HIV/AIDS Treatment and Modernization Act of
2006 (Pub. L. No. 109-415, 120 Stat. 2767).
[80] CDC provides funding to state and local health departments for HIV
prevention, including counseling, testing, and referral services,
primarily through cooperative agreements and grants.
[81] We interviewed officials from the following state health
departments: California, Florida, Hawaii, Indiana, Missouri, North
Carolina, Pennsylvania, Rhode Island, and Washington.
[82] Highly active antiretroviral therapy (HAART) means any combination
of three or more antiretroviral drugs. While HAART has greatly improved
survival rates of individuals living with HIV/AIDS, there is currently
no cure for the disease.
[83] J. Bailargeon, et al., "Accessing Antiretroviral Therapy Following
Release from Prison," Journal of the American Medical Association, Vol.
301, No. 8 (2009).
[84] Department of Health and Human Services, Health Services and
Resources Administration, Opening Doors: The HRSA-CDC Corrections
Demonstration Project for People Living with HIV/AIDS (Washington,
D.C.: 2007). [hyperlink,
http://hab.hrsa.gov/tools/openingdoors/index.htm].
[85] R. J. Wolitski, et al., "Relative Efficacy of a Multisession
Sexual Risk-Reduction Intervention for Young Men Released from Prisons
in 4 States," American Journal of Public Health, Vol. 96, No. 10
(2006).
[86] CDC, Demonstration Projects for State and Local Health
Departments: Routine Rapid HIV Testing of Inmates in Short-Stay
Correctional Facilities (Atlanta, GA: 2004). [hyperlink,
http://www.cdc.gov/hiv/topics/prev_prog/ahp/resources/factsheets/Correct
ional_Facilities.htm].
[87] Department of Health and Human Services, Health Resources and
Services Administration HIV/AIDS Bureau, What's Going on @ SPNS.
Enhancing Linkages: Opening Doors for Jail Inmates (Washington, D.C.:
2008). [hyperlink, http://hab.hrsa.gov/special/products2g.htm].
[88] Department of Health and Human Services, Health Resources and
Services Administration HIV/AIDS Bureau, Policy Notice 07-04: The Use
of Ryan White HIV/AIDS Program Funds for Transitional Social Support
and Primary Care Services for Incarcerated Persons (Washington, D.C.:
2007). [hyperlink, http://hab.hrsa.gov/law/0704.htm].
[89] CDC, HIV Testing Implementation Guidance for Correctional Settings
(Atlanta, GA: 2009). [hyperlink,
http://www.cdc.gov/hiv/topics/testing/resources/guidelines/correctional-
settings/index.htm].
[90] Opt-out testing is when a patient is notified that testing is a
routine part of medical care and will be performed unless the patient
declines.
[End of section]
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