Addressing the Challenges of the HIV Continuum of Care in High-Prevalence Cities in the United States

INTRODUCTION The overarching theme of this supplemental issue of JAIDS is addressing the challenges of the HIV continuum of care in high-prevalence cities in the United States. The supplement features 10 articles describing research projects conducted by National Institutes of Health (NIH)–supported Centers for AIDS Research (CFAR) and AIDS Prevention Center (APC) academic investigators, with their complementary biomedical and behavioral expertise, working largely in collaboration with their local public health departments. This supplemental issue describes the second series of studies to emerge from an NIH-funded initiative designed to increase collaborations among the CFARs, APCs, and local public health departments to inform and enhance outcomes in the HIV care continuum in settings where evidence-based practices are urgently needed. This introductory article begins with a brief overview of the National HIV/AIDS Strategy (NHAS)1 and the federal HIV Care Continuum Initiative (CCI),2 and a summary of current Centers for Disease Control and Prevention (CDC) programs established to address the NHAS and the HIV continuum of care. A summary of the current status of HIV care continuum research in the United States is presented, followed by an overview of the NIH-supported CFAR/APC Working Group on the HIV Continuum of Care3 that was created to address research gaps in this scientific arena. Finally, a synthesis of the 10 articles written by members of the Working Group that comprise this supplement is provided. NHAS AND THE HIV CCI The NHAS, released by the President Obama in July 2010, ushered in a new era with important changes in how HIV research, prevention, and care are implemented in the United States.1 It focuses on decreasing new HIV infections, improving access to and outcomes from HIV care, reducing disparities, and increasing coordination across the various levels of government responsible for funding research, prevention, and care. The goals of NHAS were reinforced by the HIV CCI, launched by Executive Order in July 2013.2 The CCI directs federal agencies to enhance their efforts to improve outcomes across the continuum of care, namely by reducing the number of people with HIV who are undiagnosed, linking diagnosed persons into care, retaining HIV-positive persons in care so that they can obtain the benefits of HIV medications, and helping them to achieve viral suppression. Of note, both the NHAS and the CCI were introduced in the context of dramatic scientific advances related to HIV prevention, rapid changes in healthcare with the implementation of the Affordable Care Act, and shrinking public health budgets for HIV prevention. After the CCI was announced, an Interagency HIV CCI Federal Working Group was formed that released a report in 2013 that included 5 recommended action steps that federal agencies were to consider and address if within their missions.4 These 5 recommendations were to (1) support, implement, and assess innovative models to more effectively deliver care along the care continuum, (2) tackle misconceptions, stigma, and discrimination to breakdown barriers to care, (3) strengthen data collection, coordination, and use of data to improve health outcomes and monitor use of federal resources, (4) prioritize and promote research to fill gaps in knowledge along the care continuum, and (5) provide information, resources, and technical assistance to strengthen the delivery of services along the care continuum, particularly at state and local levels.4 The Office of National AIDS Policy (ONAP) released a report in December 2014 that provides a comprehensive overview of what federal agencies have been doing to achieve NHAS goals and improve outcomes along the HIV continuum of care.5 The report provides an illuminating snapshot of how a broad range of federal agencies have acted to achieve the goals and vision of NHAS, and it shows progress along the continuum of care but indicates that much work remains to be performed.5 SUMMARY OF CURRENT CDC PROGRAMS ON THE HIV CONTINUUM OF CARE For illustrative purposes, we provide an overview of some of the recent activities implemented by the CDC in response to the NHAS and particularly the CCI. For HIV prevention, CDC directly funds all state health departments in the United States, 8 large city health departments, and a handful of territorial or other special health departments. The CDC also directly funds over 100 community-based organizations and provides indirect support to even more community-based organizations through health department funding. This funding covers basic public health activities such as HIV surveillance (health departments only) and HIV programs such as HIV testing, linkage to care, and behavioral interventions to reduce risk, enhance linkage to and engagement in care, and improve adherence to HIV treatment. One important shift in HIV prevention since 2010 is that surveillance and programmatic activities, once very separate domains, are increasingly becoming linked and interdependent, as surveillance data are being used for programmatic purposes at both the individual level (for patient tracking through the care continuum) and the jurisdictional level (for monitoring of outcomes along the care continuum).6 Recent funding announcements have supported this linkage and have also directed grantees to focus on highest impact activities, learn how to bill for services now covered by the Affordable Care Act such as HIV testing, implement systems that allow complete reporting of surveillance data including HIV care indicators, and explore how to share those data safely for program use. Immediately after NHAS was announced, CDC began, with support from numerous federal partners, the first of 3 demonstration projects with health departments to design and implement programs to best meet NHAS goals and accelerate progress along the continuum of care. The first project, Enhanced Comprehensive HIV Prevention Planning (ECHPP), involved the implementation of a wide range of high-impact HIV prevention activities in the 12 cities with the most cases of AIDS.7 As described below, NIH also provided funding to researchers in most of the ECHPP cities to conduct research in conjunction with health departments to support the goals of ECHPP and NHAS.8 In 2012, the second project, Care and Prevention in the United States (CAPUS) was implemented in 8 states including 6 southern states. This project focuses on improving outcomes across the continuum of care and addressing the social determinants of health that most directly affect continuum outcomes in each jurisdiction.9 In 2014, the third project, Partnerships for Care (P4C) was implemented with funding going to 4 health departments from CDC and to up to 6 community health centers in each jurisdiction [funded by Health Resources and Services Administration's (HRSA) Bureau of Primary Health Care]. There are over 100 service sites involved in P4C, and the goal is to increase provision of routine HIV screening and HIV prevention and care services in health centers in areas adversely affected by HIV.10 In addition to the high-visibility demonstration projects, CDC has research, programmatic, and surveillance efforts to improve outcomes along the continuum of care. CDC launched a Web site on the “data to care” or D2C strategy of using surveillance data for programmatic purposes to follow-up on individuals shown to be out of care. This tool is one of many identified by federal agencies that support NHAS and the CCI.5 In 2014, CDC funded the Cooperative Re-Engagement Controlled Trial (CoRECT) to test the data to care strategy of using surveillance and clinic data to identify and reengage people out of HIV care. CDC HIV surveillance staff and grantees have worked on improving completeness of laboratory data reporting (key for monitoring continuum of care outcomes) and provided technical assistance on how to calculate the continuum of care using CDC guidance for local analyses. CDC has also required that funding for some activities is contingent on state collection and submission of data necessary to calculate the care continuum. In September 2014, CDC released the first “State HIV Prevention Progress Report,” which provides data, where available, across all states and the District of Columbia for 6 indicators that measure outcomes across the continuum of care.11 This report showed that no state was in the bottom or top quartile on all indicators, and it highlights the fact that national goals cannot be met without closing the gaps between states. CDC launched 2 communication campaigns in 2014. “HIV Treatment Works” targets HIV-positive persons to try to improve outcomes along the continuum of care, whereas “Start Talking, Stop HIV” is a campaign targeted to all gay and bisexual men urging communication with partners and understanding of the many new prevention options available today. Finally, CDC expanded its Compendium of Evidence-Based Interventions and Best Practices for HIV Prevention to include interventions to improve adherence to care (2012) and interventions to improve linkage to and retention in care (2014).12 The activities covered here highlight the focus on continuum of care activities at just 1 agency, but they mirror what has occurred at many federal agencies to respond to the groundbreaking NHAS and the CCI. CURRENT STATUS OF HIV CONTINUUM OF CARE RESEARCH IN THE UNITED STATES Providing optimal care for HIV-infected individuals and improving outcomes by decreasing morbidity and mortality from HIV has always been a major goal of care since the early years of the HIV epidemic. In August of 1990, the US Congress passed the groundbreaking Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.13 At the time the legislation was passed, more than 150,000 AIDS cases had been reported in the United States, more than 100,000 had died, and ARV therapy as we know it today was not available. The CARE Act is a unique program that, as payer of last resort, has helped level the playing field by making access to care available to those who are uninsured or underinsured. The CARE Act has undergone major changes since then and has grown to a program that provides care to more than 536,000 HIV-infected individuals with a budget of more than $2.3 billion dollars per year in FY14. More recently, improving virologic outcomes of those in care has become a major goal of the program. In 2007, Cheever14 published an article that highlighted the fact that engagement in HIV care falls in a continuum that begins with the HIV-infected individual unaware of their status and extends to the individual who is fully engaged in care and virologically suppressed. With the results of HPTN 05215 and the realization that achievement of virologic suppression of those infected with HIV leads to a dramatic reduction of transmission, the era of “treatment as prevention” began and a major focus of both care and prevention programs has become improving access to care and virologic suppression. However, it was soon realized that population-wide virologic suppression is not as simple as it seems. In both developed and developing countries, there is substantial patient loss at each step of the care continuum from HIV diagnosis to linkage to care, retention in care, initiation of ARV therapy, and virologic suppression and despite the large amount of resources that are dedicated to HIV prevention and care in the United States, less than 30% of HIV-infected persons are believed to be virologically suppressed.16 Clearly understanding the HIV care continuum and improving it through the implementation of evidence-based interventions is a major priority if we are to achieve the NHAS goal of an “AIDS-free generation.” In the past year, many efforts have also been made at the global level to achieve better outcomes. UNAIDS has recently set ambitious targets in their “90-90-90” initiative stating that by 2020, 90% of all people living with HIV will know their HIV status, 90% of those diagnosed will be on ARV therapy, and 90% of those on therapy will have viral suppression.17 This is clearly an aspirational goal, but even when 90% of HIV infections are diagnosed, 90% are engaged in care, and 90% of treated individuals are virologically suppressed, there are still about 34% of HIV-infected individuals who remain viremic and potentially infectious to others.18 Understanding that improvement in any single component of the care continuum in isolation will have minimal impact on the proportion of HIV-infected individuals with an undetectable viral load is critical for program implementation to be successful at a population level. Research focusing on the HIV care continuum has exploded in recent years. Through January 2015, a total of 655 articles are available in PubMed searching the “HIV care continuum” (362 since 2011). At major HIV conferences such as the Conference on Retroviruses and Opportunistic Infections (CROI), IDWeek, and the International Conference on AIDS, HIV care continuum presentations have become common enough that sessions are now devoted to this topic. Available published research on the HIV care continuum can be classified into 3 major areas: (1) descriptive/epidemiological studies, (2) assessing and modeling the impact of interventions, and (3) Monitoring quality of care. Descriptive/epidemiological studies have focused on describing the care continuum in different countries and populations/subpopulations. At the national level in the United States, the CDC has documented significant age disparities across the continuum, with younger age individuals being less likely to achieve viral suppression.19 This disparity is more pronounced among young black men.20 Clinical outcomes including virologic suppression appear to be significantly better in integrated care settings and structured programs that minimize barriers to care such as co-pays. For example, among members of the US Air Force, median CD4 count at diagnosis between 2006 and 2011 was 479 cells per microliter, and there was a shorter time from diagnosis to initiation of ARV therapy, with more than 88% of patients achieving virologic suppression at 1 year.21 Similarly, the Veterans Affairs has reported high rates of virologic suppression with the reduction of institutional barriers to care and treatment.22 An analysis of the Ryan White Program in 2011 also suggested high rates of virologic suppression among patients retained in care,23 but this study also reminds us that retention in care is challenging, particularly for individuals aged 13–34 years. Studies assessing and modeling the impact of interventions have helped define which integrated packages of interventions will be more effective at a population level. For example, among HIV-infected persons who use drugs, screening for and treatment of underlying substance use disorders is critical.24 Modeling data from Newark suggests that implementation in 2013 of a combination of interventions will lower incidence by only 16% by 2023.25 A major use of the HIV care continuum has been to monitor quality of care and provide evidence that equity in HIV care outcomes is attainable when high-quality care is provided.26 Except for studies to increase HIV testing uptake and adherence to ARV therapy, interventions that specifically address the care continuum through randomized controlled trials are sparse in the literature. A linkage to care intervention called ARTAS is an example,27 as is a recent intervention to improve retention in care.28 As research studies of interventions to improve the care continuum are implemented, it is important that we recognize that issues such as stigma, discrimination, poverty, unstable housing, co-pays, etc. will all affect outcomes, and thus social determinants of disease should be front and center of such interventions. Therefore, studies evaluating the use of peer health navigators and contingency management to improve outcomes such as NIDA CTN study 049 (NCT01612169) are quite timely. Finally, the Affordable Care Act offers an opportunity to study the impact of a major change in health policy in HIV care outcomes. CFAR/APC ON THE HIV CONTINUUM OF CARE The CFAR/APC HIV Continuum of Care Working as the ECHPP Working was in 2011 to promote and conduct HIV implementation research by academic in collaboration with their local departments of health An of funding was in September 2011 to support in the highest AIDS cities in the United States and to conduct research on HIV prevention and care interventions in support of the CDC ECHPP In a supplemental issue of JAIDS published in results from studies were on HIV linkage to care, retention and in care, viral HIV health service and In August 2012, a second of funding was to at and to at 3 National of Health in and This funding was to support implementation focused on the HIV care on HIV testing, linkage to care, retention and in care, and adherence to A third of funding was in 2013 to at 10 6 that were new to this to interventions with their local to address the HIV continuum of care. In the of AIDS Research and the National of and of AIDS recently a Program to address in current understanding of the HIV care continuum in the HIV Care Continuum this of is not to be among research are (1) better understanding of engagement in care in a as patients reengage in HIV care in a range of (2) better understanding and intervention for within the care continuum outcomes are particularly young men who have with men of (3) addressing the of intervention and testing for linkage to care with in treatment (4) studies of including and barriers and that affect HIV testing, and retention in care, and (5) and progress to of care continuum monitoring with innovative of available surveillance The articles in this supplement also areas and to public health department to enhance patient progress through the care continuum to viral load suppression. OF CONTINUUM OF CARE A synthesis of the 10 articles that are included in this supplemental issue of JAIDS is in this by the steps in the HIV continuum of care. The first and and for each project are shown in and study was conducted in to assess a routine HIV testing program with linkage to HIV care services in departments along the HIV continuum of care for persons with HIV more than significant were when and rates were for linkage to care, retention in care, and viral In were conducted with HIV-infected persons in identified as engaged in HIV and young men who have with and to care were identified in 3 health care and such as the and social service social including and social support, stigma, substance and and individual level such as substance and In a for assessing retention in care on the number of patient for about patients at HIV clinic in 2011 was with on HIV laboratory to the of The that and can be and for large of patients and that a surveillance of 2 or more HIV viral CD4 from the laboratory more than had the best of and when with a and a local community were in to into community and on the use of surveillance data by departments of public health to improve and rates for HIV-infected persons in care. The results supported the use of if were involved early in the of such programs and their each with their benefits and were including data and by patient In there were individual and with rates of retention in care and viral suppression in areas that had been to have rates of The significant between in and such as to care and and access to public In HIV were their and to both and the surveillance of patients were classified as in care, as care, and as out of care. However, of the patients as out of care, believed they were fully engaged in care, had a in the past year, and 90% reported they were on ARV patient of their HIV care status from and In and with the local of Health HIV surveillance were used to assess how be used in a complementary to assess HIV patients who were for HIV care at a large public clinic were to care. Of a of patients who were believed to be out of care, were to be in care by more whereas of those classified by the local HIV surveillance as out of care, were by tracking to be in care. tracking and surveillance an of the incidence of those to care over 3 years on patient were conducted with HIV-infected in to explore individual and barriers were with clinic were to have significantly viral and lower CD4 than and significantly individual barriers to care quality of with and significantly barriers including communication with their and barriers than and an total number of barriers was to be significantly with rates of viral In 5 focus were conducted among gay and bisexual men to assess a to HIV care affect outcomes along the HIV care continuum. that the provide and support that to engagement in HIV care and ARV Finally, a randomized study was conducted in among HIV-infected patients to assess the impact of of ARV substance and using with The that of various is and potentially and that research of this is SUMMARY In addressing the challenges of the HIV care continuum is critical so that the goals of the NHAS can be CDC is working with federal partners, public health departments, and the United States on programmatic, and research to inform and improve outcomes along the HIV care continuum. a large number of research projects are being conducted to the care continuum in various assess and the impact of interventions, and monitor the quality of care. to this knowledge NIH is working with its academic partners to support research that will inform the of HIV treatment and prevention As of this the CFAR/APC HIV Continuum of Care Working Group was formed to communication between academic and their local and to support research that are both and to their cities and Finally, the results in this supplement have for those in which the studies were