HIV/AIDS: Federal and State Efforts to Identify Infected Individuals and Connect Them to Care
Published: 2009-09-23T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: 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.
section_title: What GAO Found
paragraphs: 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.

section_title: Letter
paragraphs: 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. 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.
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, 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. 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. 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. 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. 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. 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. 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. Additionally, CDC has  identified the requirement for separate written informed consent or  pretest counseling as barriers to routine HIV testing. 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.
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. 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. 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.
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; (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.
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. 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.
subsections: section_title: Background
paragraphs: 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. 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.  Second, the advent of highly active antiretroviral therapy (HAART) has  transformed HIV from a fatal disease to a treatable condition. 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. 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.
subsections: section_title: Funding for HIV Testing
paragraphs: 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. 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.
section_title: CDC HIV Testing Recommendations
paragraphs: 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. 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. 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. 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.
section_title: CDC HIV and AIDS Surveillance
paragraphs: 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.
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. 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. Name-based HIV reporting had been in place in these  jurisdictions since the end of 2003 or earlier.
section_title: The CARE Act
paragraphs: 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. 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. 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.
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. 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. 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.
section_title: CDC and HRSA Have Coordinated on HIV Activities to Assist Health Care Professionals, and Both Agencies Have Taken Steps to Encourage Routine HIV Testing
paragraphs: 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.
subsections: section_title: CDC and HRSA Have Coordinated Activities to Assist Health Care Professionals Who Provide HIV-Related Services
paragraphs: 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. 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. 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. The document also describes  how case management is practiced in different settings and methods for  strengthening linkages among case management programs. 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. 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. The agencies hold biennial  national meetings to increase training coordination of STD/HIV prevent and treatment, family planning/reproductive health, and substance abuse  prevention to maximize the use of training resources.
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.
section_title: HRSA Has Encouraged Routine HIV Testing by Providing for Training for Health Care Providers as Part of CDC-Funded Initiatives
paragraphs: 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. 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.
section_title: CDC Has Taken Other Steps to Encourage Routine HIV Testing
paragraphs: 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. 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. 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. 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. CDC officials said that  in 2009, one state received funding for implementing voluntary opt-out  testing at STD clinics and substance abuse treatment centers. 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.
section_title: Most Selected State and Local Health Departments Reported Not Widely Implementing Routine HIV Testing in Their Jurisdictions and Barriers Exist to Its Implementation
paragraphs: 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.
subsections: section_title: 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
paragraphs: 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. 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, 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.
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.
section_title: Officials from Selected State and Local Health Departments and Other Sources Have Identified Barriers That Exist to Implementing Routine HIV Testing
paragraphs: 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,  but only 6 reimbursed for routine HIV testing. 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.  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. 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. 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. 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.
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.
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.
section_title: CDC Officials Estimated That About 30 Percent of the Agency’s Annual HIV Prevention Funding Is Spent on HIV Testing
paragraphs: 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. 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.
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.
section_title: 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
paragraphs: 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, the most recent year for which  data were available. 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. 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. CDC reported that in place of the  Supplement to HIV/AIDS Surveillance project, the agency has  implemented the Medical Monitoring Project. However, data from the  Medical Monitoring Project were not available at the time of our analysis.
section_title: 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
paragraphs: 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.
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. 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.  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.  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.
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.
section_title: Officials We Interviewed Identified Barriers to Care That Exist for HIV, but Agencies Have Implemented Initiatives to Connect HIV-Positive Individuals to Care
paragraphs: 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.
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. 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.
section_title: Agency Comments
paragraphs: 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  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.
section_title: Appendix I: Information on Transitioning Prisoners with HIV to Care Upon Their Release
paragraphs: 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. 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. 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. CARE Act  programs have been reauthorized three times (1996, 2000, and 2006) and  are scheduled to be reauthorized again in 2009. 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.
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.  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.
subsections: section_title: Background
paragraphs: 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. 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. 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.
section_title: CDC, HRSA, and States Have Taken Steps to Address the Provision of HIV Prevention and Care for Prisoners with HIV Upon Their Release
paragraphs: 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.
subsections: section_title: 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
paragraphs: 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. 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.
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.
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: “Expanding the Reach of  Prevention.” This forum provided an opportunity for subject matter  experts in the fields of corrections and academia as well as  representatives from health departments and community-based  organizations to develop effective prevention strategies for their  correctional systems.
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. 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. 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. 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. 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.
section_title: Selected State Health Departments Have Coordinated with Their Respective State Departments of Corrections on HIV- Positive Prisoner Transition Programs
paragraphs: 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.
section_title: Appendix II: Part A Grantees’ Living HIV/AIDS Cases Used by HRSA to Determine Fiscal Year 2009 CARE Act Base Grants
paragraphs: Appendix II: Part A Grantees’ Living  HIV/AIDS Cases Used by HRSA to Determine  Fiscal Year 2009 CARE Act Base Grants Atlanta, Ga.
Austin, Tex.
Baltimore, Md.
Baton Rouge, La.
Bergen-Passaic, N.J.
Boston, Mass.
Caguas, P.R.
Charlotte-Gastonia, N.C.-S.C.
Chicago, Ill.
Dallas, Tex.
Denver, Colo.
Detroit, Mich.
Dutchess County, N.Y.
Fort Lauderdale, Fla.
Fort Worth, Tex.
Hartford, Conn.
Houston, Tex.
Indianapolis, Ind.
Jacksonville, Fla.
Jersey City, N.J.
Kansas City, Mo.
Las Vegas, Nev.
Los Angeles, Calif.
Memphis, Tenn.
Miami, Fla.
Middlesex-Somerset-Hunterdon, N.J.
Minneapolis-St. Paul, Minn.
Nashville, Tenn.
Nassau-Suffolk, N.Y.
New Haven, Conn.
New Orleans, La.
New York, N.Y.
Newark, N.J.
Norfolk, Va.
Oakland, Calif.
Orange County, Calif.
Orlando, Fla.
Philadelphia, Pa.
Phoenix, Ariz.
Ponce, P.R.
Portland, Ore.
Riverside-San Bernardino, Calif.
Sacramento, Calif.
San Antonio, Tex.
San Diego, Calif.
San Francisco, Calif.
San Jose, Calif.
San Juan, P.R.
Santa Rosa, Calif.
Seattle, Wash.
St. Louis, Mo.
Tampa-St. Petersburg, Fla.
Vineland-Millville-Bridgeton, N.J.
Washington, D.C.
West Palm Beach, Fla.
section_title: Appendix III: Part B Grantees’ Living HIV/AIDS Cases Used by HRSA to Determine Fiscal Year 2009 CARE Act Base Grants
section_title: Appendix IV: GAO Contact and Staff Acknowledgments
subsections: section_title: Acknowledgments
paragraphs: 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.