1

Introduction

Approximately 1.1 million people in the United States currently are living with HIV (CDC, 2012d; Hall et al., 2012). Of these individuals, only about 82 percent have been diagnosed (CDC, 2012d,f; Hall et al., 2012)1; fewer still are receiving clinical care for HIV, including antiretroviral therapy (ART); and only 19 to 25 percent have achieved viral suppression (Burns et al., 2010; CDC, 2012d; Gardner et al., 2011; Hall et al., 2012). In July 2010, the White House Office of National AIDS Policy (ONAP) released its National HIV/AIDS Strategy (NHAS), the primary goals of which are to (1) reduce the number of people who become infected with HIV, (2) increase access to care and optimize health outcomes for people with HIV, and (3) reduce HIV-related health disparities (ONAP, 2010). The NHAS identifies action steps for each of the three primary goals and sets quantitative targets to be achieved by 2015 (see Box 1-1).

In September 2010, ONAP commissioned the Institute of Medicine (IOM) to establish a committee of experts to review public and private data systems that capture information on the care of people with HIV and to recommend ways to utilize and supplement existing data to track the impact of the NHAS and the Patient Protection and Affordable Care Act (ACA) (P.L. 111-148) on improving HIV care in the United States. In response to this charge, the IOM convened the 17-member Committee to Review Data Systems for Monitoring HIV Care composed of experts in clinical HIV care, mental health, health services research, private health insurance, health

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1Eighteen percent undiagnosed in 2009 is an improvement over the 20 percent of people living with undiagnosed HIV in 2006 (CDC, 2012f).



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1 Introduction Approximately 1.1 million people in the United States currently are living with HIV (CDC, 2012d; Hall et al., 2012). Of these individuals, only about 82 percent have been diagnosed (CDC, 2012d,f; Hall et al., 2012)1; fewer still are receiving clinical care for HIV, including antiretroviral ther- apy (ART); and only 19 to 25 percent have achieved viral suppression (Burns et al., 2010; CDC, 2012d; Gardner et al., 2011; Hall et al., 2012). In July 2010, the White House Office of National AIDS Policy (ONAP) released its National HIV/AIDS Strategy (NHAS), the primary goals of which are to (1) reduce the number of people who become infected with HIV, (2) increase access to care and optimize health outcomes for people with HIV, and (3) reduce HIV-related health disparities (ONAP, 2010). The NHAS identifies action steps for each of the three primary goals and sets quantitative targets to be achieved by 2015 (see Box 1-1). In September 2010, ONAP commissioned the Institute of Medicine (IOM) to establish a committee of experts to review public and private data systems that capture information on the care of people with HIV and to rec- ommend ways to utilize and supplement existing data to track the impact of the NHAS and the Patient Protection and Affordable Care Act (ACA) (P.L. 111-148) on improving HIV care in the United States. In response to this charge, the IOM convened the 17-member Committee to Review Data Systems for Monitoring HIV Care composed of experts in clinical HIV care, mental health, health services research, private health insurance, health 1Eighteen percent undiagnosed in 2009 is an improvement over the 20 percent of people living with undiagnosed HIV in 2006 (CDC, 2012f). 11

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12 MONITORING HIV CARE IN THE UNITED STATES BOX 1-1 National HIV/AIDS Strategy Action Steps and Targets Reducing New HIV Infections Action Steps Intensify HIV prevention efforts in communities where HIV is most heav- ily concentrated. Expand targeted efforts to prevent HIV infection using a combination of effective, evidence-based approaches. Educate all Americans about the threat of HIV and how to prevent it. Targets By 2015, lower the annual number of new infections by 25 percent. reduce the HIV transmission rate, which is a measure of annual trans- missions in relation to the number of people living with HIV, by 30 percent. increase from 79 to 90 percent the percentage of people living with HIV who know their serostatus. Increasing Access to Care and Improving Health Outcomes for People Liv- ing with HIV Action Steps Establish a seamless system to immediately link people to continuous and coordinated quality care when they are diagnosed with HIV. Take deliberate steps to increase the number and diversity of available providers of clinical care and related services for people living with HIV. Support people living with HIV with co-occurring health conditions and those who have challenges meeting their basic needs, such as housing. Targets By 2015, increase the proportion of newly diagnosed patients linked to clinical care within 3 months of their HIV diagnosis from 65 to 85 percent. policy, housing policy, the Ryan White HIV/AIDS Program, biostatistics, epidemiology, health disparities, and biomedical informatics (see the Ap- pendix, Biographical Sketches of Committee Members). The committee, which was given a two-part statement of task (Box 1-2), released its first report, Monitoring HIV Care in the United States: Indicators and Data Systems, in March 2012 (IOM, 2012). Responding to the first part of the committee's statement of task, the report identifies core and additional indicators related to continuous clinical HIV care and access

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INTRODUCTION 13 ncrease the proportion of Ryan White HIV/AIDS Program clients who i are in care (at least two visits for routine HIV medical care in 12 months at least 3 months apart) from 73 to 80 percent. increase the percentage of Ryan White HIV/AIDS Program clients with permanent housing from 82 to 86 percent. Reducing HIV-Related Health Disparities and Health Inequities Action Steps Reduce HIV-related mortality in communities at high risk for HIV infection. Adopt community-level approaches to reduce HIV infection in high-risk communities. Reduce stigma and discrimination against people living with HIV. Targets By 2015, increase the proportion of HIV diagnosed gay and bisexual men with undetectable viral load by 20 percent. increase the proportion of HIV diagnosed Black Americans with unde- tectable viral load by 20 percent. increase the proportion of HIV diagnosed Latinos with undetectable viral load by 20 percent. Achieving a More Coordinated National Response to the HIV Epidemic in the United States ncrease the coordination of HIV programs across the federal govern- I ment and between federal agencies and state, territorial, local, and tribal governments. Develop improved mechanisms to monitor and report on progress to- ward achieving national goals. to supportive services, such as housing, food and nutrition, and transporta- tion, as well as 12 public and private data collection efforts the committee concluded would be the most useful for estimating the indicators in order to monitor the effect of the NHAS and the ACA on access to and provision of quality HIV care. The report discusses how data can be used to estimate the committee's recommended indicators and describes potential barriers to and the role of health information technology in the collection and linkage of data pertain-

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14 MONITORING HIV CARE IN THE UNITED STATES BOX 1-2 Statement of Task The White House Office of National AIDS Policy has requested that the Insti- tute of Medicine (IOM) convene a committee of experts to assess available public and private data systems that capture information about HIV care to investigate ways to maximize their usefulness and recommend approaches for supplementing current data sources and to identify and provide recommendations for the most critical data and indicators to gauge the impact of the National HIV/AIDS Strategy and the Patient Protection and Affordable Care Act in improving HIV/AIDS care. The committee will address the following questions in its first consensus report: 1.What are the best sources of data (and which data elements should be used) from public and private HIV care databases to assess core indicators related to continuous care and access to supportive services, such as housing, for people living with HIV? a. What data collection items need to be revised or reconsidered in existing databases of care and services provided to people living with HIV and in demographic data about populations receiving these services? Are there proposed changes that can provide necessary data without adding additional burden to data collection? b. What is the difference between claims data and clinical data found in medical records and do these differences encompass gaps in measures for HIV care? 2.What similar data collection or standardization efforts are currently under way by public agencies or private industry that should be tapped? 3.How do we regularly obtain data (core indicators) that capture the care experiences of people living with HIV without substantial new investments? 4.What situations may impose barriers to the collection of core indicators? a. What policies, reimbursement issues or reporting issues need to be addressed to collect necessary data? ing to HIV care, as well as the possibilities and challenges of combining data from different data systems to estimate the indicators identified by the committee. The current report, which responds to the remaining portion of the committee's charge, addresses how to monitor the changes in health care coverage, service utilization, and quality of care for people with HIV that are anticipated under the ACA. Almost 30 percent of people with HIV in the United States have no source of health care coverage and only 17

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INTRODUCTION 15 b. How can data be collected in a way that will not significantly increase provider burden? 5. How can federal agencies efficiently analyze care indicators and dis- seminate data to improve HIV care quality? 6. What models or best practices in data system integration can be gleaned from public agencies or private industry to make existing data systems and core indicators interoperable? a. Which among these models or combination of models would be most cost effective? 7. How should health information technology (including electronic medical records) be utilized and configured in order to improve the collection of comprehensive data describing the care experiences of people living with HIV? In a second consensus report, the committee will address the following question: 1. 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 Ryan White? c. How do we continue to regularly obtain data from a large sample (nationally representative or otherwise) of HIV-positive individuals after 2014 to monitor the impact of the Affordable Care Act on health insurance and health care access? percent have private insurance; the remaining 53 percent are covered by government programs such as Medicaid, Medicare, and the Ryan White HIV/AIDS Program (HHS, 2012a). Many aspects of health reform under the ACA, including expansion of Medicaid eligibility requirements, elimina- tion of preexisting condition exclusions, and lifting of annual and lifetime dollar limits on care, should substantially decrease the number of people with HIV who have no health care coverage and possibly result in changes to sources of coverage for others.

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16 MONITORING HIV CARE IN THE UNITED STATES THE COMMITTEE'S APPROACH TO ITS CHARGE The committee's two reports complement one another. In considering the statement of task for the current report, the committee thought 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 already in its first report. One of the questions posed in the statement of task for the first report asks about how to "obtain data (core indicators) that capture the care experiences of people living with HIV without substantial new investments," and the first report focuses primarily on the identification of indicators and data systems for and approaches to estimating the indicators and monitoring the qual- ity of clinical HIV care and access to mental health, substance abuse, and supportive services for people with diagnosed HIV in the United States. Although the statement of task for the first report does not specifically mention "national" or "nationally representative" estimates, the commit- tee was mindful of this goal in its approach to the first report, including its identification of public and private data collection efforts for estimating the recommended indicators. The present report focuses on the collection of data on health coverage status and data systems needed to address the current statement of task subquestions (a) through (c) pertaining to the establishment of "a baseline for health insurance and health care access status prior to 2014" and to monitoring "the impact of the [ACA] on health insurance and health care access" following its implementation in 2014. The committee considered subquestions (a) and (b) to be linked. The first asks how to obtain a nation- ally representative sample of people living with HIV in the United States prior to 2014, and the second poses a conditional question about alterna- tive ways, including the use of "multiple existing data sources or requiring a complete accounting of all HIV-positive persons in care," to obtain "data on care and utilization beyond those individuals enrolled in the Ryan White HIV/AIDS Program" if it is not possible to obtain a nationally representa- tive sample. The committee interpreted this conditional question to apply to the acquisition of necessary data to establish a baseline for health care coverage and utilization status prior to 2014, if it concluded it were not currently possible to collect these data from a nationally representative sample of HIV-diagnosed individuals in the United States. The committee understood subquestion (c) to be a forward-looking opportunity to recommend an on- going, dynamic strategy for capturing data from a nationally representative sample of HIV-diagnosed individuals in the United States. Given the chal- lenges discussed in the committee's first report of collecting and combin- ing data from disparate systems to generate an overall picture of the care

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INTRODUCTION 17 experiences of people with HIV in the United States (IOM, 2012, Chapters 4-6), development of a unique mechanism for capturing relevant informa- tion would simplify the collection and analysis of data and provide more detailed and representative data than currently exist to monitor the impact of the ACA on health care coverage and utilization for people with HIV. The committee recognized that the development and maintenance of a successful, ongoing, dynamic strategy for capturing data from a nationally representative sample of HIV-diagnosed individuals in the United States will require sufficient funding. However, it determined that a detailed cost anal- ysis and budgetary recommendation was beyond the scope of its charge. The committee's two reports, although distinct, do overlap in certain ways. For example, as discussed in later chapters, it will be important to monitor care quality using indicators such as those recommended in the committee's first report in addition to tracking the movement of indi- viduals into and among different sources of health coverage, which is the purview of the present report. In addition, the first report examined how best to obtain data to estimate the indicators using existing data systems and "without substantial new investments." The same ongoing mechanism recommended in the present report to capture data from a nationally rep- resentative sample of HIV-diagnosed individuals in the United States "to monitor the impact of the ACA on health insurance and health care ac- cess" potentially could also be used to simplify the collection and analysis of data to generate a national estimate of the indicators recommended in the first report. Although the statement of task refers generally to "people living with HIV," for the purpose of this report, the committee interpreted this phrase as referring to people living with a diagnosis of HIV in the United States, since there is no practical way to obtain a "large sample (nationally repre- sentative or otherwise)" of people living with HIV that includes individuals with undiagnosed infection.2 In addition, the present report limits the popu- lation under consideration to adults and adolescents (ages 13 and older). The use of ART to reduce or prevent perinatal transmission of the virus has resulted in a relatively small number of newly diagnosed pediatric HIV cases in the United States each year (CDC, 2012a, Table 1a). Although there 2The availability of rapid home-based HIV testing in the wake of the U.S. Food and Drug Administration's approval of an over-the-counter rapid HIV test in July 2012 "has the potential to identify large numbers of previously undiagnosed HIV infections especially if used by those unlikely to use standard screening methods" (FDA, 2012). Availability of such testing may affect timely reporting of individuals newly diagnosed through home-based testing to public health authorities for surveillance purposes and timely linkage of those individuals to care, as well as related measures pertaining to HIV diagnosis and linkage to care. Speculation on specific ways in which home-based testing may affect these measures is premature and beyond the scope of the committee's charge.

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18 MONITORING HIV CARE IN THE UNITED STATES is a similarly low rate of new HIV diagnoses among 13- to 14-year-olds (CDC, 2012a, Table 1a), adolescents age 13 and older fall within the same HIV screening and treatment guidelines as adults (Branson et al., 2006; HHS, 2012b) and therefore are included with the adult population. For ease of reference, however, the report generally uses variations of "people with HIV" to refer to adults and adolescents living with a diagnosis of HIV. Where it is important to distinguish among diagnostic status and age groups (e.g., in the epidemiology section of this chapter), the committee took care to do so. In considering the statement of task, the committee interpreted the term "health insurance" broadly to include all types of private and public plans or programs that cover health care and related services, including private health insurance; federal programs (e.g., Medicaid, Medicare, Ryan White HIV/AIDS Program, military health care, Indian Health Service); and in- dividual state health plans. Since not all of the programs that cover care for people living with HIV (e.g., Ryan White HIV/AIDS Program, Veterans Health Administration) are insurance, this report preferentially uses the term health care "coverage." For its first report, the committee considered more than 30 data systems and data collection efforts, including some that are HIV specific and others that are not but capture information on people living with HIV. The com- mittee then requested information from 29 public and private 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 core indicators of HIV care. The committee revisited these data sources for this second report to identify those that capture data relevant to monitoring health care coverage and utilization for people with HIV within the context of the ACA. Data of particular interest include enrollment and demographic information; sources of health coverage; and utilization of care, preventive, and supportive services. The committee considered which data collection efforts, including convenience samples (e.g., North American AIDS Cohort Collaboration on Research and Design [NA-ACCORD], CFAR [Centers for AIDS Research] Network of Integrated Clinical Systems [CNICS], HIV Research Network [HIVRN]) and national health-related surveys (e.g., National Health Interview Survey [NHIS], National Health and Nutrition Examination Survey [NHANES], National Health Care Surveys), could best capture data on health care coverage and utilization for a nationally rep- resentative sample of people with HIV in the United States and which best capture these data at the state level. The committee also took into account the findings from its first report on the extent to which various data sources capture information to estimate indicators of care quality and outcomes for people with HIV. Care quality and outcomes are important to monitor as

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INTRODUCTION 19 the ACA is implemented because continuity of care may be disrupted and the range of benefits available to individuals may change as they move into and among sources of care coverage. REPORT ORGANIZATION The remainder of Chapter 1 discusses the current epidemiology of the HIV epidemic, provides background on clinical HIV care and supportive services, and discusses the importance of an ongoing strategy for monitor- ing health care coverage and utilization for people with HIV in the United States. The chapter also highlights some examples of current and past broad-based data collection efforts. Chapter 2 gives a selective overview of the ACA; discusses ways in which implementation of the ACA is likely to affect people with HIV in the United States; and highlights some of the challenges of implementing the ACA. Chapter 3 provides background in- formation to support the committee's conclusions and recommendations for how to establish a baseline for health care coverage, utilization, and quality prior to the implementation of the ACA; how to obtain relevant data from a nationally representative sample of people with HIV in the United States; and how to continue to monitor the impact of the ACA on these outcomes. The chapter first provides background information on the limitations of national health-related surveys for collecting data on specific diseases such as HIV and the sampling design and methodology used in the HIV Cost and Services Utilization Study (HCSUS), the first nationally representative study of HIV-infected adults in care in the United States. Referring to the committee's first report, it then notes the challenges and possibilities that attend establishing a baseline of health care coverage and utilization prior to 2014. The chapter next describes and discusses the strengths and limita- tions of the Medical Monitoring Project, a surveillance project conducted by the Centers for Disease Control and Prevention (CDC) that is cur- rently designed to obtain nationally representative estimates of the clinical and behavioral characteristics of HIV-diagnosed individuals in care. The chapter also discusses how data from programs most apt to be affected by health reform, particularly Medicaid, Medicare, and the Ryan White HIV/AIDS Program, will be needed to monitor changes in health care coverage and utilization for people with HIV in the context of the ACA at the state and programmatic level. Chapter 4 contains the committee's conclusions and recommendations for monitoring health care coverage, utilization, and outcomes for people with HIV prior to and following full implementation of the ACA in 2014.

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20 MONITORING HIV CARE IN THE UNITED STATES STUDY CONTEXT Epidemiology of HIV The epidemiology of the HIV epidemic is important for evaluating how representative different data collection efforts are of the national HIV- diagnosed population and for highlighting areas in which they may need to improve. As outlined in this section, differences in the racial and ethnic distribution of HIV-infected individuals among different regions of the country, differences in transmission category between men and women, and differences in prevalence trends among age groups illustrate the complexity of the HIV epidemic in the United States. Such variations, along with other factors such as differences in socioeconomic status, highlight the need for careful attention to sampling in any effort to obtain a nationally representa- tive sample of people living with HIV in the United States. There has been a significant shift in the HIV epidemic in the United States since the first cases were reported in the 1980s. In the early years of the epidemic, the virus that leads to AIDS had not yet been identified and treatments were limited, resulting in an epidemiologic focus on AIDS diagnoses and deaths. Within 11 years, the number of people diagnosed with AIDS grew rapidly from about 300 in 1981 to more than 75,000 in 1992, and the disease accounted for more than 50,000 deaths in 1995 (CDC, 2012c). In recent years, the annual rate of new AIDS diagnoses has decreased from 11.5 per 100,000 in 2007 to 10.8 per 100,000 in 2009 and 2010, while the death rate has held steady at 5.8 per 100,000 (CDC, 2012a, Tables 2b and 12a). Advances HIV diagnosis and treatment have contributed to the decrease in AIDS diagnoses as well as increased preva- lence of non-AIDS HIV cases. With the advent of highly active antiretrovi- ral therapy, HIV has become a chronic disease, and infected individuals are living longer, healthier lives. Although the number of newly HIV-infected individuals has stabilized at approximately 50,000 per year in the past few years (CDC, 2012c), the number of people estimated to be living with HIV in the United States has increased 8 percent from 2006 through 2009 (CDC, 2012f, Table 5b) because there are fewer deaths than new infections each year. In addition, increased testing and resultant diagnoses have contrib- uted to a 9 percent increase in the number of people living with diagnosed HIV infection in the same time period. By the end of 2009, an estimated 1,148,200 people 13 years of age and older were living with HIV/AIDS in the United States, including an estimated 207,600 people with undiagnosed HIV/AIDS (CDC, 2012f, Table 5a). The increase in HIV prevalence has important resource implications for the diagnosis and care of people living with HIV.

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INTRODUCTION 21 Geographic Variations The prevalence of individuals living with diagnosed HIV varies among U.S. regions and among racial and ethnic groups within the regions (Table 1-1).3 In addition, there have been geographical shifts in the distri- bution of HIV in the United States. The burden of the epidemic, which was initially concentrated in major metropolitan areas such as San Francisco and New York City, has expanded over time to include more rural areas and the Southeast. In 2009, the southern region had the highest percentage of reported individuals with diagnosed HIV; 43 percent of people living with diagnosed HIV in the United States were living in the South (CDC, 2012a, Table 21; see Figure 1-1). In addition, the South had the highest per- centage (45 percent) and the second highest rate (13 per 100,000) of newly diagnosed AIDS cases in the United States in 2010 (CDC, 2012f, Table 4a). The Northeast has the next highest percentage of people living with diagnosed HIV (26 percent) and of new AIDS diagnoses (24 percent), but the highest rate of newly diagnosed AIDS cases (14.2 per 100,000) (CDC, 2012a, Table 21; 2012f, Table 4a). The West accounts for 19 percent of people living with diagnosed HIV and of new AIDS cases, and the Midwest accounts for 12 percent and 13 percent of each respectively (CDC, 2012a, Table 21; 2012f, Table 4a). The CDC also reports data for the U.S. dependent areas of American Samoa, Guam, Northern Mariana Islands, Puerto Rico, Republic of Palau, and U.S. Virgin Islands (CDC, 2012a, Table 21). The U.S. Virgin Islands and Puerto Rico have the highest rates of adolescents and adults living with diagnosed HIV (approximately 633 and 556 per 100,000 respectively). Racial and Ethnic Variations Overall, racial and ethnic minorities are disproportionately affected by HIV (Figure 1-2). Although blacks/African Americans accounted for 14 percent of the U.S. population in 2009, they represented 43 percent of people living with diagnosed HIV in 2009 and 46 percent of new HIV diagnoses in 2010 (CDC, 2011a, 2012a, Tables 1a and 15a). The rate of 3The CDC (2012a, p. 14) divides the country into four geographic regions--Northeast, South, Midwest, and West. States that comprise the Northeast are Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Vermont. Areas of residence that comprise the South are Alabama, Arkansas, Delaware, District of Columbia, Florida, Georgia, Kentucky, Louisiana, Maryland, Mississippi, North Carolina, Oklahoma, South Carolina, Tennessee, Texas, Virginia, and West Virginia. States that comprise the Midwest are Illinois, Indiana, Iowa, Kansas, Michigan, Minnesota, Missouri, Nebraska, North Dakota, Ohio, South Dakota, and Wisconsin. States that comprise the West are Alaska, Arizona, California, Colorado, Hawaii, Idaho, Montana, Nevada, New Mexico, Oregon, Utah, Washington, and Wyoming.

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42 MONITORING HIV CARE IN THE UNITED STATES April 2008, all 50 states and the District of Columbia, as well as American Samoa, Guam, Puerto Rico, the U.S. Virgin Islands, the Northern Mariana Islands, and the Republic of Palau--one of three freely associated states that report HIV surveillance data to CDC11--had implemented confiden- tial, name-based HIV reporting (CDC, 2011c). Although the data for all reporting areas are included in CDC's annual HIV Surveillance Report, 2012 marks the first year that all states have sufficiently mature reporting systems to permit CDC to statistically adjust the data for reporting delays and missing information (CDC, 2012e).12 In terms of data elements of interest for tracking the impact of the ACA, the NHSS includes date of HIV/AIDS diagnosis, information on CD4+ T-cell count and plasma HIV RNA (viral load) closest to diagnosis, and optional fields for HIV and substance abuse treatment referral, preg- nancy status, and ART status at the time of reporting. Demographic data captured in the NHSS can be used to monitor health disparities among people with HIV with regard to race, ethnicity, sex, gender, age, geographic area, and country of birth.13 Most jurisdictions also report all CD4 count and viral load results,14 which permits the tracking of individuals' health status over time. AIDS Cost and Services Utilization Survey Although not designed to be nationally representative of people with HIV, ACSUS (1991-1992) was the first large-scale and broadly representa- tive effort, beyond surveillance, to collect data on HIV-infected individuals. Sponsored by the Agency for Health Care Policy and Research, now the Agency for Healthcare Research and Quality (AHRQ), ACSUS focused on people receiving HIV care and provided longitudinal data on health care services use, expenditures, and sources of payment for care of adults and children at various stages of HIV infection, and the ways in which those 11The Federated States of Micronesia and the Republic of the Marshall Islands are the other two freely associated states. 12The HIV Surveillance Report for 2012, to be issued in 2014, will be the first to include aggregate data from all 50 states (CDC, 2010). 13The full set of data elements captured in the NHSS can be obtained from the Adult and Pe- diatric Confidential HIV Case Report forms (available at http://www.odh.ohio.gov/pdf/IDCM/ frm5042a.pdf; http://www.odh.ohio.gov/pdf/IDCM/frm5042b.pdf [accessed June 13, 2012]). 14As of June 15, 2010, 33 of 59 reporting areas (50 states, District of Columbia, 5 U.S. de- pendent areas, and 3 freely associated states) were reporting all CD4 and viral load test result, including 30 states, District of Columbia, Guam, and Puerto Rico (Personal communication, Amy Lansky, Centers for Disease Control and Prevention, October 6, 2011). More states are moving toward reporting all CD4 and viral load test results. Massachusetts, for example, man- dated that all CD4 and all HIV viral load results be electronically reported by clinical and com- mercial laboratories as of January 2012 (Massachusetts Department of Public Health, 2012).

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INTRODUCTION 43 variables changed over the course of the illness (Berk et al., 1993; Fleishman et al., 1994). The study collected data on 2,090 HIV-infected adults and children receiving clinical HIV care from spring 1991 through fall 1992. Partici- pants (or their proxies) were interviewed in person quarterly for a total of six interviews (Berk et al., 1993; Hsia et al., 1995). Interview data were supplemented by medical, service utilization, billing, and other data obtained from the providers of inpatient, ambulatory, and home health care, as well as pharmacy data and Medicaid, and Health Care Financing Administration claims records (Berk et al., 1993). Data also were collected from nonmedical providers, including community-based organizations that offer supportive services, podiatrists, and alternative therapy providers.15 Interview data were gathered on participants' age, sex, race and eth- nicity, educational level, employment history, income sources, insurance type, stage of illness, route of exposure, and clinical trials participation. Information also was collected on participant's living arrangements and social support network; experience of barriers to the receipt of services; functional status; and psychological affect and experience of pain (Berk et al., 1993; Hsia et al., 1995; Niemcryk et al., 1998). During each interview, participants were asked to give a full accounting of all providers from whom they had received services since the previous interview. With permis- sion, those providers were contacted to obtain clinical and laboratory data, as well as data on service utilization, charges, and source of payment (Berk et al., 1993). Such data were collected on hospital admissions, emergency department use, outpatient services, drug and alcohol treatment, dental treatment, and counseling or support group services (Niemcryk et al., 1998), in addition to data on pharmacy and home health service utilization (Berk et al., 1993). HIV Cost and Services Utilization Study HCSUS (October 1994-September 2000) was the first major research effort to collect information on a nationally representative sample of adults receiving care for their HIV infection (AHRQ, 1998; RAND, 2011). De- signed to collect and analyze data on medical and nonmedical cost and service utilization for adults with HIV, HCSUS was a cooperative effort conducted by a public-private consortium based out of the RAND Cor- poration and funded by a number of public agencies and private entities, through an agreement between AHRQ and RAND (RAND, 2011). HCSUS was a prospective observational study that collected data 15Providers of dental services were not contacted directly due to concern about exposing patients' HIV status.

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44 MONITORING HIV CARE IN THE UNITED STATES through three serial interviews with a national probability sample of HIV- infected adults receiving regular medical care in the first 2 months of 1996 and interviews with providers and caregivers. Additional data were collected through health, dental, pharmacy, and billing record abstrac- tion (Bozzette et al., 1998; Frankel et al., 1999; Shapiro et al., 1999). Participants were identified using a three-stage probability design with population-proportion-to-size sampling in which cases were randomly se- lected based on geographic location, provider, and patient (RAND, 2011). Of 4,042 eligible participants, 76 percent were interviewed (Andersen et al., 2000), yielding data on approximately 3,000 HIV-infected persons receiv- ing care in hospitals, clinics, HMOs, or private practices who were living in urban areas or clusters of rural counties in the contiguous United States. The study population included racial and ethnic minorities, adult males and females with varying levels of education, routes of HIV infections, and health care service coverage (see Shapiro et al., 1999). HCSUS consisted of a core study that explored the "cost, use, and quality of care; access to and unmet needs for care; quality of life; social support; knowledge of HIV; clinical outcomes; mental health; and the rela- tionship of these variables to provider type and patient characteristics" and seven supplemental studies (RAND, 2011). In addition to interviews, par- ticipants' medical, financial, and pharmaceutical records were abstracted, and a subset of participants had blood drawn to measure CD4+ T-cell count, viral load, and the presence of genotypic and phenotypic sequences associated with antiviral resistance (RAND, 2011). Medical Monitoring Project Initiated in 2005 in response to the IOM report Measuring What Mat- ters: Allocation, Planning, and Quality Assessment for the Ryan White CARE Act (IOM, 2004), MMP is a CDC-sponsored population-based surveillance system currently designed to collect comprehensive clinical and behavioral services need, utilization, and outcomes data on a nationally representative sample of adults (18 years of age) living with HIV/AIDS who are receiving medical care from outpatient facilities in the United States and Puerto Rico (Blair et al., 2011). Approximately 480,000 of the 942,000 diagnosed HIV-infected individuals in the United States are retained in clini- cal HIV care (CDC, 2011d). It is this population from which MMP draws. MMP is the first project since HCSUS that is designed to obtain compre- hensive information about HIV care from a nationally representative popu- lation of people with HIV who are in care. As discussed in greater detail in Chapter 3, MMP employs a probability proportional to size sampling design to obtain cross-sectional probability samples of its target population. Data are obtained from individual patient interviews and medical record

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INTRODUCTION 45 reviews. MMP also includes a minimum data set of core surveillance data from NHSS for all individuals sampled. Limitations of Nationally Representative Studies Although nationally representative studies hold promise for providing an overarching picture of health care coverage and utilization among people with HIV in the United States, they are generally not useful for generating comparisons among subgroups where stratification results in subgroups too small for meaningful analysis. For example, nationally representative studies such as MMP may not be sufficiently large to permit state-by-state analysis and comparisons of health care coverage and utilization.16 Yet, monitoring health care coverage and experiences at the state level is impor- tant because of state variations in implementation of the ACA (discussed in Chapter 2), Medicaid eligibility and benefits, and health care coverage re- quirements and available options, as well as state and regional disparities in access to health care by people with HIV. Similarly, it will be important to monitor changes in enrollment and in some cases benefits that are expected to occur in various sources of health coverage as the ACA is implemented. All studies designed to be nationally representative face the difficulty inherent in including marginalized, hard-to-reach populations (e.g., indi- viduals with mental and substance abuse disorders, those in correctional facilities, the homeless). The funding and labor necessary to ensure that all populations are sufficiently represented can be high. Adequate funding and careful attention to sampling and recruitment methods are necessary to ensure the collection of sufficient data for all subpopulations. REFERENCES Agwu, A. L., J. A. Fleishman, P. T. Korthuis, G. K. Siberry, J. M. Ellen, A. H. Gaur, R. Rutstein, and K. A. Gebo. 2011. Disparities in antiretroviral treatment: A comparison of behaviorally-HIV-infected youth and adults in the HIV Research Network. Journal of Acquired Immune Deficiency Syndromes 58(1):100-107. AHRQ (Agency for Healthcare Research and Quality). 1998. HCSUS Fact Sheet. HIV Cost and Services Utilization Study. http://www.ahrq.gov/data/hcsus.htm (accessed March 26, 2012). Andersen, R., S. Bozzette, M. Shapiro, P. St Clair, S. Morton, S. Crystal, D. Goldman, N. Wenger, A. Gifford, A. Leibowitz, S. Asch, S. Berry, T. Nakazono, K. Heslin, W. Cunningham, and the HCSUS Consortium. 2000. Access of vulnerable groups to anti- retroviral therapy among persons in care for HIV disease in the United States. Health Services Research 35(2):389-416. 16In addition, MMP data are limited to 17 states.

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