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Summary 1 In September 2010, the White House Office of National AIDS Policy commissioned an Institute of Medicine (IOM) committee to respond to a two-part statement of task concerning how to monitor care for people with HIV. The IOM convened a committee of 17 members with expertise in HIV clinical care and supportive services, epidemiology, biostatistics, health policy, and other areas to respond to this task. The committee's first report, Monitoring HIV Care in the United States: Indicators and Data Systems, was released in March 2012. The report identified 14 core indicators of c linical HIV care and mental health, substance abuse, and supportive services for use by the Department of Health and Human Services (HHS) to monitor the impact of the National HIV/AIDS Strat- egy (NHAS) and the Patient Protection and Affordable Care Act (ACA) (P.L. 111-148) on improvements in HIV care and identified sources of data to estimate the indicators. The report also addressed a series of questions related to the collection, analysis, and dissemination of data necessary to estimate the indicators. In this second report, the committee addresses how to obtain national estimates that characterize the health care of people with HIV within the context of the ACA, both before 2014 and after 2014 when key provisions of the ACA will be implemented (see Box S-1, Statement of Task). The ACA will provide care coverage to millions of previously uninsured Americans, including many people with HIV. Some provisions of the ACA 1Thissummary does not include references. Citations to support text, conclusions, and recommendations made herein are given in the body of the report. 1

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2 MONITORING HIV CARE IN THE UNITED STATES BOX S-1 Statement of Task How do we obtain national estimates that characterize the health care of people living with HIV in public and private settings? a.How can we obtain data from a nationally representative sample of HIV-positive individuals in the United States to establish a baseline for health insurance and health care access status prior to 2014? b.If it is not possible to obtain a nationally representative sample of people living with HIV, are there other alternatives (including using multiple existing data sources or requiring a complete accounting of all positive persons in care) to obtain data on care and utilization beyond those individuals enrolled in the Ryan White HIV/AIDS Program? c.How do we continue to regularly obtain data from a large sample (na- tionally representative or otherwise) of HIV-positive individuals after 2014 to monitor the impact of the Patient Protection and Affordable Care Act on health insurance and health care access? that will improve access to health coverage and care for people with HIV include expansion of the Medicaid program in some states2 to include non- Medicare-eligible individuals with incomes up to 133 percent of the federal poverty level3; closure of the Medicare Part D prescription drug coverage gap; increased access to private health insurance and consumer protections; and expansion of coverage for preventive services. This report addresses how to monitor the anticipated changes in health care coverage, service utilization, and quality of care for people with HIV within the context of the ACA. The committee's two reports, although distinct, do overlap in certain ways. For example, it will be important to monitor care quality us- ing indicators such as those recommended in the committee's first report in addition to tracking the movement of individuals into and among different sources of health coverage, which is the focus of the present report. 2On June 28, 2012, the U.S. Supreme Court ruled that the Medicaid expansion provision of the ACA, which would withhold federal funding for Medicaid from states that failed to comply, was unduly coercive, meaning that states cannot be penalized for choosing not to participate in the new program by taking away existing Medicaid funding. As a result, states are likely to exhibit greater variation than anticipated in the scope of eligibility in their Med- icaid programs. 3A standard 5 percent income disregard effectively increases the limit to 138 percent of the federal poverty level.

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SUMMARY 3 COMMITTEE'S APPROACH TO ITS CHARGE For its first report, the committee requested information from 29 data systems on the types of data collected (e.g., data on demographics, access to care, need for supportive services) to identify best sources of data to estimate the committee's recommended core indicators. The committee revisited these data sources for this second report to identify those that capture data relevant to monitoring the care experiences of people with HIV within the context of the ACA, such as health care coverage and utilization. The committee considered which data collection efforts could best produce nationally representative estimates of people with HIV in the United States and which best capture data on health coverage and utiliza- tion at the state level. The committee also considered the extent to which the various data sources capture information to estimate indicators of care quality for people with HIV. Care quality will be important to monitor as the ACA is implemented because continuity of care may be disrupted and the range of benefits available to individuals may shift as they move among sources of care coverage. The committee reviewed several existing national population-based health surveys as potential sources of data on health care coverage and utilization for a nationally representative sample of people with HIV, in- cluding the National Health Interview Survey, the Medical Expenditure Panel Survey; the National Health and Nutrition Examination Survey; the Behavioral Risk Factor Surveillance System; and the National Survey on Drug Use and Health. These surveys capture data relevant to monitor- ing care within the context of the ACA, for example, on sources of care coverage, care utilization, and demographic information. However, due to the relatively low prevalence of HIV in the general U.S. population, the number of people with HIV included in a given sample will be too small for meaningful analysis. In addition, population-based health surveys were not designed to generate representative estimates for people with specific diseases. Including questions about HIV serostatus and additional questions on HIV care experiences for HIV-infected individuals in national surveys, therefore, would not be adequate to generate nationally representative es- timates of their health care coverage and utilization. Although the statement of task refers generally to "people living with HIV," the committee chose to focus this report on people living with a diag- nosis of HIV in the United States. The committee did not interpret its charge to include people with HIV who are undiagnosed as there is no practical way to obtain a "large sample (nationally representative or otherwise)" of people living with HIV that includes such individuals. In addition, the com- mittee limited the population under consideration to adults and adolescents (ages 13 and older). The use of antiretroviral therapy to reduce or prevent

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4 MONITORING HIV CARE IN THE UNITED STATES perinatal transmission of HIV has resulted in a relatively small number of newly diagnosed pediatric HIV cases in the United States each year COMMITTEE'S CONCLUSIONS AND RECOMMENDATIONS How to Establish a Baseline of Health Care Coverage and Utilization Prior to 2014 There currently is no single source of data to generate a nationally representative baseline of care coverage and utilization for people with HIV prior to 2014. In considering the statement of task for this report, the committee felt that the first, overarching, question about how to obtain "national estimates that characterize the health care of people living with HIV in public and private settings" had been addressed in its first report. That report identified 12 data systems, including public and private and HIV-specific and non-HIV specific systems, that the committee concluded could serve as a collective platform for evaluating access to continuous and high-quality care in all populations of people with HIV. Although none of these systems are designed to be nationally representative, together they can provide a reasonably accurate baseline of care coverage and utilization before 2014. Recommendation 1. Given that there currently is no single data collec- tion system that can be used to establish a baseline for health care cov- erage and utilization for a nationally representative sample of people with HIV in the United States, the Office of National AIDS Policy should use multiple existing data sources to establish this baseline prior to 2014. These data sources might include · National HIV Surveillance System · Medical Monitoring Project · Ryan White HIV/AIDS Program · Medicaid and Medicare · Veterans Health Administration · Housing Opportunities for Persons with AIDS · North American AIDS Cohort Collaboration on Research and Design · CFAR Network of Integrated Clinical Systems · HIV Research Network · Private insurers As the committee concluded in its first report with respect to the estimation of its recommended indicators for clinical HIV care and supportive services,

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SUMMARY 5 combining data from multiple data systems presents a range of analytic and logistical challenges that will change over time and need to be revalu- ated periodically. To that end, the committee reiterates its recommendation from the first report pertaining to periodic reevaluation of mechanisms for combining relevant data elements and identification of and approaches to addressing barriers to the efficient analysis of data, including relevant sta- tistical methodologies. How to Continue to Obtain Data to Monitor Health Care Coverage and Utilization After 2014 The committee's first report describes a number of challenges to col- lecting and combining data from multiple sources to create a picture of the overall care experiences of people with HIV in the United States. For example, the various sources of care and care coverage have their own health information technology systems with disparate architectures and vocabularies that impede the sharing of data across systems. Development of a unique mechanism for capturing relevant information would simplify the collection and analysis of data and could also provide more detailed and representative data than currently exist to monitor care coverage and utilization among people with HIV. The Medical Monitoring Project (MMP) was initiated in 2005 partially in response to the IOM report Measuring What Matters: Allocation, Plan- ning, and Quality Assessment for the Ryan White CARE Act, which de- scribed a need for nationally representative data on the care and preventive service needs of individuals with HIV in the United States. Conducted by the Centers for Disease Control and Prevention (CDC) through cooperative agreements with health departments located in 23 project areas (17 states and 6 cities), MMP is a population-based surveillance system designed to assess the clinical and behavioral characteristics of a nationally representa- tive sample of adults with HIV who are in care. After reviewing multiple data systems, the committee found that MMP is a promising resource for the generation of nationally representative estimates of care coverage and utilization for people with HIV. MMP already collects data on central di- mensions of health care reform, such as sources of health coverage; access to HIV care and unmet need for supportive services; quality and compre- hensiveness of care; receipt of recommended clinical and preventive services (e.g., screenings and immunizations); and the organizational context and structure of care. MMP also collects data on patient age, race and ethnic- ity, country of birth, sex at birth, gender, sexual orientation, and education and income, allowing for analyses of disparities in health care coverage and utilization. MMP's repeated (annual) cross-sectional design permits new questions to be added to the data collection instruments as information

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6 MONITORING HIV CARE IN THE UNITED STATES needs change at different phases of ACA implementation. MMP data are reflective of the experiences of patients who receive care in a variety of set- tings, public and private, and whose care is covered by a variety of payers, including Medicaid, Medicare, the Ryan White HIV/AIDS Program, and private insurance, among others. This makes MMP a useful source of data to track care utilization and quality in different care organizational models and the distribution of health coverage among people with HIV during and following implementation of the ACA. Although MMP provides a promising basis upon which to build, the committee raised a number of concerns about its current ability to generate nationally representative data, including concerns about MMP's current response rate and its representation of vulnerable populations. Although MMP's response rate has improved over time, the overall patient response rate for 2010, the most recent year for which data are available, was 56 per- cent. Another concern is that MMP does not currently include people who have a diagnosis of HIV infection but who are not in care, many of whom stand to benefit from provisions of the ACA that will improve access to health care coverage. Adolescents (ages 13-17) are also excluded by design, leaving a gap in representative data on health care coverage and utilization for this age group. It is also important to ensure adequate representation of populations, such as immigrants, people who are homeless or unstably housed, people with mental and substance abuse disorders, and people who flow in and out of the corrections system, who are more likely to experience gaps in health care coverage and care. Expansion of MMP to include new populations is likely to gener- ate the need for additional staffing resources. Substantial resources and expertise are also required to achieve adequate response rates, including from vulnerable populations, and to support data collection, analysis, and dissemination activities. Training and technical support for staff in the 23 MMP project areas will continue to be critical to the success of the project. It is important that funding for MMP is commensurate with these activities. Recommendation 2. By 2015, the Centers for Disease Control and Pre- vention (CDC) should improve the Medical Monitoring Project (MMP) to ensure higher response rates and increased sample representative- ness. CDC should expand MMP to include representative numbers of HIV-diagnosed individuals not in care, adolescents, and those in the criminal justice system and take particular care to ensure adequate representation of vulnerable populations, including, but not limited to immigrants; individuals who are homeless or unstably housed; and people with mental or substance use disorders.

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SUMMARY 7 The committee encourages CDC to continue to test strategies for improving MMP sample completion and representation of vulnerable populations of people with HIV who are not in care. Such strategies might include using the National HIV Surveillance System (NHSS) for participant sampling; using a dual-frame sampling approach that combines medical facility-based sampling to identify individuals in care and NHSS-based sampling to iden- tify individuals not in care; implementing real-time sampling within select facilities; and extending the time period for participant recruitment and data collection. Recommendation 3. The Office of National AIDS Policy and the De- partment of Health and Human Services should use the Medical Moni- toring Project, once improved, to obtain nationally representative data on health care coverage and utilization for people with HIV. Historically, priorities for HIV surveillance have shifted with changes in the distribution of HIV burden among people living with HIV, new knowl- edge about transmission risk, clinical indicators of health for people with HIV, HIV treatment guidelines, and other factors. Surveillance priorities inevitably will continue to shift within the context of the ACA. Similarly, new questions may emerge over time with respect to access to and receipt of quality care by people with HIV as the ACA is implemented. For ex- ample, researchers and policy makers may want to gather information on reasons for changes in care quality consequential to shifts in care cover- age and the range of benefits available to people with HIV. A mechanism should be established for periodic evaluation of MMP to ensure that data collected are responsive to changes in the HIV epidemic and ACA-related informational needs. Recommendation 4. The Department of Health and Human Services should convene and fund a multidisciplinary task force responsible for designing improvements in the Medical Monitoring Project and for ensuring that it remains responsive to changes in the epidemic and the health care environment. Although designed to be nationally representative, the MMP does not collect data on individuals with HIV in all U.S. states and territories. Simi- larly MMP is not designed to provide an in-depth look at care coverage and utilization within coverage sources of particular importance for HIV- infected individuals. Data from Medicaid and the Ryan White HIV/AIDS Program, because they are captured for all states and territories, can serve as useful sources of state-level information on care coverage and utilization to supplement findings from MMP. Medicaid and the Ryan White HIV/

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8 MONITORING HIV CARE IN THE UNITED STATES AIDS Program, along with Medicare, are also currently the most common sources of care coverage for people with HIV. More than half of those liv- ing with diagnosed HIV infection in the United States are covered by these programs. Although not generalizable to all HIV-infected individuals in the United States, analysis of data from these specific programs, in addition to data from MMP, is essential to highlight how ACA provisions that affect program eligibility and coverage of services impact the care experiences of people with HIV. These data and analyses are especially important given the wide variation in eligibility and benefits across state Medicaid programs, as well as differences in implementation of the health insurance exchanges under the ACA. Although they are often proprietary, private health insurer data should also be used to monitor the care experiences of people with HIV within the context of the ACA. Currently, almost one in five individuals with HIV has private health insurance. Many more individuals with HIV are likely to enroll in private health insurance with the implementation of new benefits and protections in the private health insurance market, such as the estab- lishment of health insurance exchanges in states to help consumers purchase health insurance and the elimination of preexisting condition exclusions. Recommendation 5. In addition to data from the Medical Monitoring Project, the Office of National AIDS Policy and the Department of Health and Human Services should use data from Medicaid, Medicare, the Ryan White HIV/AIDS Program, and private insurers to monitor the impact of the Patient Protection and Affordable Care Act on health care coverage and utilization at the state and program level. Although health care reform will increase access to care coverage for people with HIV, it does not guarantee linkage to, retention in, and receipt of quality care. Individuals with HIV who transition across sources of health insurance coverage could experience disruptions in their continuity of care and the array of services that are available to them at any given time. For example, the Ryan White HIV/AIDS Program model of care provides a range of supportive services in addition to clinical care within a single "medical home." Care for many people with HIV will likely shift from the Ryan White HIV/AIDS Program to other sources of care as the ACA expands other programs, particularly Medicaid, to cover adults who were previously uninsured. This change could affect the range of services available to individuals previously enrolled in the Ryan White HIV/AIDS Program and the quality of care that they receive. By bringing previously uninsured individuals into the health care system, the ACA will also place demands on the health care workforce to provide care to a greater number of individuals. Provider shortages and delays in service provision could

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SUMMARY 9 impact care quality. Thus, it will be important to monitor both trends in care quality for individuals with HIV and enrollment among the various sources of care coverage as the ACA is implemented. In its first report, the committee identified core indicators to monitor the impact of the NHAS and the ACA on HIV care as well as care quality. These or similar indica- tors could be used to measure care quality within the context of the ACA. Recommendation 6. The Office of National AIDS Policy, working with the Department of Health and Human Services, should ensure the col- lection and linkage of data on core indicators4 to monitor quality of care for people with HIV during and following the implementation of the Patient Protection and Affordable Care Act. Data tracking health care coverage sources, enrollment, service uti- lization, and core outcomes among people with HIV are important for monitoring the impact of the ACA and the NHAS on access to and quality of HIV care in the United States over time. The data may be used to iden- tify any difficulties encountered as individuals with HIV transition among sources of care coverage and to inform future planning related to the health care workforce and possible redistribution of resources to improve the qual- ity and efficiency of care and reduce HIV-related health disparities. Report- ing the data at least once every 2 years will permit stakeholders, including policy makers, health care coverage programs and plans, organizations of health care professionals, and others, to anticipate future needs and make appropriate midcourse corrections to advance the goals of the NHAS and maximize access to quality HIV care under the ACA. Recommendation 7. The Department of Health and Human Services should produce and disseminate a report at least once every 2 years on the care of people with HIV. This report should characterize trends and identify gaps in coverage and care during and following the implemen- tation of the Patient Protection and Affordable Care Act. 4Fourteen core indicators for monitoring access to clinical HIV care and mental health, substance abuse, and supportive services were recommended by the committee in its first report, which includes discussion of the collection and linkage of data needed to estimate the indicators. HHS currently is in the process of implementing the use of seven common core in- dicators for HIV diagnosis, treatment, and care services across HHS-funded programs (http:// blog.aids.gov/2012/08/secretary-sebelius-approves-indicators-for-monitoring-hhs-funded-hiv- services.html). This recommendation is not intended to duplicate federal efforts to monitor HIV care and supportive services but to ensure that such monitoring occurs in conjunction with the tracking of changes in enrollment patterns and benefit packages among different sources of coverage for HIV care.

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10 MONITORING HIV CARE IN THE UNITED STATES Sufficient resources will be required for the collection and analysis of data from MMP, Medicaid, Medicare, the Ryan White HIV/AIDS Program, and other sources to monitor trends in access to care and care coverage for people with HIV as well as to assess the quality of care for this population. The production and dissemination of a report at least once every 2 years summarizing the care experiences of people with HIV based on analysis of data from these sources will also require adequate staff and funding.