Question (a) from the committee’s statement of task asks how to obtain data from a nationally representative sample of people with HIV to establish a baseline for access to health coverage and care prior to 2014, by which time several of the provisions of the Patient Protection and Affordable Care Act (ACA) (P.L. 111-148) should be fully implemented. The committee concluded that there currently is no single data collection effort that can provide a baseline prior to 2014, nor is there a system that can be modified quickly enough to serve this purpose. Given this conclusion, the committee considered question (b) from the statement of task about alternatives, including the use of data from multiple existing data sources for obtaining data on health care coverage, access, utilization, and outcomes for a large sample of people with HIV. The committee’s first report identified 12 data systems that it concluded could serve as a collective platform for evaluating access to continuous and high-quality care in all populations of people with HIV (IOM, 2012, p. 167). Together, these data systems can provide a reasonably accurate baseline for health care coverage and utilization prior to 2014. Most of these systems capture some data on health coverage status.
Recommendation 1. Given that there currently is no single data collection system that can be used to establish a baseline for health care coverage 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, combining data from multiple data systems presents a range of analytic and logistical challenges that will change over time and need to be revaluated 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 statistical methodologies (IOM, 2012, p. 315).
Question (c) from the committee’s statement of task asks about how to regularly obtain data from a nationally representative sample of people with HIV to monitor the impact of the ACA on health care coverage and utilization after 2014. The committee saw this as an opportunity to recommend a dynamic strategy for capturing data from a nationally representative sample of people with diagnosed HIV. Given the challenges discussed in the committee’s first report of collecting and combining data from disparate systems to generate an overall picture of the care experiences of people with HIV in the United States (IOM, 2012, Chapters 4-6), development of a unique mechanism for capturing relevant information 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.
After reviewing multiple data systems, the committee concluded that the Medical Monitoring Project (MMP) is a promising resource for the generation of nationally representative estimates of health care coverage and utilization for people with diagnosed HIV. Since people with HIV comprise less than 1 percent of the U.S. population, it is unlikely that national population-based health surveys will include a sufficient sample of people with HIV to generate nationally representative data on the care experiences of this population. In contrast, MMP focuses specifically on people with HIV. MMP was designed by the Centers for Disease Control
and Prevention (CDC) as an HIV surveillance tool that would supplement the National HIV Surveillance System (NHSS) by providing detailed and nationally representative information about the care experiences and needs of adults ≥18 years with diagnosed HIV who are in care.
MMP collects data on dimensions of care that correspond to major components of health care reform, such as source of health coverage and the distribution of different sources of coverage; access to HIV care and unmet need for supportive services (including for people with different types of coverage); the quality and comprehensiveness of care; receipt of recommended clinical and preventive interventions (e.g., screenings and immunizations); and the organizational context and structure of care (e.g., where care is provided, who is providing that care, and whether care is occurring in the context of new organizational models intended to improve service coordination [e.g., patient-centered medical homes, accountable care organizations]). In addition, MMP captures clinical data needed to estimate indicators of care quality within the context of the ACA. Along with the Ryan White HIV/AIDS Program, MMP is one of only a few data systems that can be used to assess unmet need for housing, food, and transportation assistance for people with HIV. Due to MMP’s repeated (annual) cross-sectional design, there is regular opportunity for questions to be added to the data collection instruments should information needs change as the ACA is implemented. Collection of data through patient interview, abstraction of patients’ medical records, and extraction of core surveillance data on each patient through the NHSS allows for corroboration of data and the collection of at least minimal data for most patients (CDC, 2012a,b).
Despite its promise, there are aspects of MMP that the committee concludes need to be improved before MMP can be used to generate nationally representative estimates of health care coverage and utilization for all people with diagnosed HIV. One concern is MMP’s current patient response rate. Although it has improved over time, the patient response rate in 2010, the most recent year for which data are available, was 56 percent. Another concern is that MMP’s current population of inference does not include the people living with diagnosed HIV who are not in care and who stand to benefit from ACA provisions that will improve access to health care coverage. CDC is pilot testing the use of the NHSS for patient sampling which would expand the study population to include individuals who are not in care. If redesigned in this way, MMP can provide data on characteristics of HIV-diagnosed adults who are not in care and on the availability and accessibility of health care coverage and utilization to these individuals (CDC, 2012a,b).
MMP also does not include, or lacks adequate representation of, particular subgroups for whom it is critical to monitor access to care and care coverage. For example, black/African American MSM (men who have sex
with men) ages of 13 through 29 are the only risk group to have had a statistically significant increase in the number of new HIV infections between 2006 and 2009 (CDC, 2011a). Because MMP’s current population of inference is limited to individuals ages 18 and older, however, it cannot be used to monitor health care coverage and utilization of adolescents 13 to 18 years of age. Adolescents have unique HIV care and treatment challenges and many are recently infected. Thus, it is important to monitor their linkage to and engagement in care (CDC, 2011b; Spiegel and Futterman, 2009). It is also crucial to ensure adequate representation of vulnerable 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. These populations are more likely to experience gaps in health coverage and care (Altice et al., 2010; Baillargeon et al., 2010; Chen et al., 2011; Dang et al., 2012; Mellins et al., 2009; Springer et al., 2011).
Expansion of MMP to include new populations such as adolescents and people not in care may generate the need for additional staffing resources, for example, to locate and recruit potential participants. Substantial resources and expertise are also required to achieve adequate response rates from a nationally representative sample of people with HIV, including those 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 essential 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 Prevention (CDC) should improve the Medical Monitoring Project (MMP) to ensure higher response rates and increased sample representativeness. 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.
The committee encourages CDC to continue to test alternative strategies for improving MMP sample completion and representation of vulnerable populations of people with HIV who are not in care, such as using NHSS as the overall sampling frame (as is currently being tested); using a dual-frame approach, combining facility-based sampling to identify individuals in care with NHSS sampling to identify individuals not in care; implementing real-time sampling, rather than list-based sampling, to sample patients within
select facilities; and extending the time period for participant recruitment and data collection.
Recommendation 3. The Office of National AIDS Policy and the Department of Health and Human Services should use the Medical Monitoring Project, once improved, to obtain nationally representative data on health care coverage and utilization for people with HIV.
HIV surveillance needs shift over time. For example, following the introduction of effective antiretroviral therapy (ART) in the mid-1990s, surveillance requirements expanded to include the extent to which providers prescribe ART as indicated, patient adherence to ART, and met and unmet need for care given the demand on the health care system to treat a growing number of people living with HIV (McNaghten et al., 2007). 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 example, researchers and policy makers may want to gather information on possible causes of changes in care quality resulting from shifts in care coverage and the range of benefits available to people with HIV. A mechanism for periodic evaluation of MMP to ensure that data collected are responsive to changes in the HIV epidemic and in ACA-related informational needs over time should be established.
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 an improved MMP will be able to provide an overall picture of trends in health coverage and utilization, additional data sources will be needed to more fully assess trends at the program and state level. Provisions of the ACA, in particular Medicaid expansion, subsidized health coverage for other low-income individuals, increased coverage of preventive care services, and the phasing out of the Medicare Part D prescription drug coverage gap, will affect enrollment and benefits within Medicaid, Medicare, and the Ryan White HIV/AIDS Program, each of which is a source of coverage for a substantial proportion of people with HIV in the United States. Fifty-three percent of people with HIV in the United States are covered by government programs such as these. In addition, the ACA will increase access to health care for many of the almost 30 percent of people with HIV in the United States who currently do not have any source of health care coverage (HHS, 2012a). Data from these programs can provide important
insights into the ACA’s impact on access to health coverage and health care for people with HIV.
Because MMP does not include patients in every state it cannot be used for state-by-state analysis of health care coverage and utilization. Data from Medicaid, Medicare, and the Ryan White HIV/AIDS Program are necessary to provide information about differences in care coverage and utilization within and across states. Since not all states will comply with the Medicaid expansion provision of the ACA, monitoring Medicaid eligibility and benefits and service utilization at the state level will be important. In addition, jurisdictional variations, such as those among health insurance exchanges and Ryan White HIV/AIDS Program services, add to the need for monitoring at the state and local level.
Roughly one in five individuals with HIV currently has private health insurance (HHS, 2012a). The proportion of people with HIV who have private health insurance may grow under the ACA due to the creation of state health insurance exchanges that will help employers and individuals purchase health insurance and the establishment of protections that will prevent individuals from being denied coverage due to preexisting conditions, such as HIV or AIDS, or having their coverage rescinded. Although private insurer data are often proprietary, to the extent feasible they should be used in concert with data from MMP and public sources of care coverage to monitor shifts in the care experiences of people with HIV in the context of the ACA.
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.
Increased access to health care through expanded coverage under the ACA will facilitate but not ensure linkage to, retention in, and provision of quality clinical HIV care for people living with HIV. For example, although the number of uninsured HIV-infected individuals will decrease, people near the eligibility borders may be expected to “churn” (i.e., move back and forth) between different sources of coverage (e.g., Medicaid, subsidized insurance through health benefit exchanges), which may affect their continuity in care and the package of benefits for which they are eligible at any given time.
Movement of individuals from the Ryan White HIV/AIDS Program (as their primary source of coverage for HIV care) into Medicaid or other subsidized insurance coverage may affect the scope of services they receive.
The Ryan White HIV/AIDS Program covers many nonclinical services, such as food and nutrition, transportation, child care, and case management services, that are important to the success of clinical HIV care. To the extent that individuals no longer receive such supportive services when they move to other sources of coverage, their clinical service utilization and health outcomes may be negatively affected.
It is important not only to monitor changes in access to health care coverage for people living with HIV but also to monitor any concurrent changes in service utilization and outcomes through the collection of necessary data and estimation of core indicators of HIV care for the populations most affected by coverage changes under the ACA, including Medicaid, Medicare, Ryan White HIV/AIDS Program, and private insurance.
Recommendation 6. The Office of National AIDS Policy, working with the Department of Health and Human Services, should ensure the collection and linkage of data on core indicators1 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 utilization, and core outcomes among people with HIV are important for monitoring the impact of the ACA and the National HIV/AIDS Strategy (NHAS) on access to and quality of HIV care in the United States over time, facilitating identification of any difficulties encountered, and informing future planning with respect to the health care workforce and the potential redistribution of resources to improve efficiency and quality of care and reduce health disparities. Such data will be of interest and use to policy makers, health care coverage programs and plans, and organizations of health care professionals, among others. Periodic reporting of the data will permit stakeholders to anticipate future needs and make midcourse corrections as needed to advance the goals of the NHAS and maximize access to quality HIV care under the ACA.
1Fourteen 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 (IOM, 2012). HHS currently is in the process of implementing seven common core indicators for monitoring HIV diagnosis, treatment, and care across HHS-funded programs (HHS, 2012b). 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.
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 implementation of the Patient Protection and Affordable Care Act.
Sufficient resources will be required to implement the committee’s recommendations. These resources include staffing and funding to support collection and analysis of data from MMP, Medicaid, Medicare, and the Ryan White HIV/AIDS Program to monitor trends in access to health insurance and health care for people with HIV; collection and analysis of data from MMP, Medicaid, Medicare, the Ryan White HIV/AIDS Program, and other data sources to estimate core indicators and assess care quality for people with HIV; and the production and dissemination of a report at least once every 2 years describing the care of people with HIV based on analysis of data from these sources.
Altice, F. L., A. Kamarulzaman, V. V. Soriano, M. Schechter, and G. H. Friedland. 2010. Treatment of medical, psychiatric, and substance-use comorbidities in people infected with HIV who use drugs. Lancet 37:6367-6387.
Baillargeon, J. G., T. P. Giordano, A. J. Harzke, G. Baillargeon, J. D. Rich, and D. P. Paar. 2010. Enrollment in outpatient care among newly released prison inmates with HIV infection. Public Health Reports 125(Suppl 1):64-71.
CDC (Centers for Disease Control and Prevention). 2011a. Estimates of New HIV Infections in the United States, 2006-2009. http://www.cdc.gov/nchhstp/newsroom/docs/HIVInfections-2006-2009.pdf (accessed July 18, 2012).
CDC. 2011b. HIV Among Youth. http://www.cdc.gov/hiv/youth/pdf/youth.pdf (accessed August 31, 2012).
CDC. 2012a. Medical Monitoring Project 2012 Protocol.
CDC. 2012b. Report on the Use of Centers for Disease Control and Prevention’s Medical Monitoring Project to Monitor the Implementation of the Affordable Care Act. Submission to committee. January.
Chen, N. E., J. P. Meyer, A. K. Avery, J. Draine, T. P. Flannigan, T. Lincoln, A. C. Spaulding, S. A. Springer, and F. L. Altice. 2011. Adherence to HIV treatment and care among previously homeless jail detainees. AIDS and Behavior (November 8). DOI 10.1007/s10461-011-0080-2.
Dang, B. N., T. P. Giordano, and J. H. Kim. 2012. Sociocultural and structural barriers to care among undocumented Latino immigrants with HIV infection. Journal of Immigrant and Minority Health 14(1):124-131.
HHS (U.S. Department of Health and Human Services). 2012a. Health Care Reform and HIV/AIDS. http://aids.gov/federal-resources/policies/health-care-reform/ (accessed July 13, 2012).
HHS. 2012b. Secretary Sebelius Approves Indicators for Monitoring HHS-Funded HIV Services. http://blog.aids.gov/2012/08/secretary-sebelius-approves-indicators-for-monitoringhhs-funded-hiv-services.html (accessed August 30, 2012).
IOM (Institute of Medicine). 2012. Monitoring HIV Care in the United States: Indicators and Data Systems. Washington, DC: The National Academies Press.
McNaghten, A. D., M. I. Wolfe, I. Onorato, A. K. Nakashima, R. O. Valdiserri, E. Mokotoff, R. A. Romaguera, A. Kroliczak, R. S. Janssen, and P. S. Sullivan. 2007. Improving the representativeness of behavioral and clinical surveillance for persons with HIV in the United States: The rationale for developing a population based approach. PLosOne (6):e550.
Mellins, C. A., J. F. Havens, C. McDonnell, C. Lichtenstein, K. Uldall, M. Chesney, E. K. Santamaria, and J. Bell. 2009. Adherence to antiretroviral medications and medical care in HIV-infected adults diagnosed with mental and substance abuse disorders. AIDS Care 21(2):168-177.
Spiegel, H. M. L., and D. C. Futterman. 2009. Adolescents and HIV: Prevention and clinical care. Current HIV/AIDS Reports 6(2):100-107.
Springer, S. A., A. C. Spaulding, J. P. Meyer, and F. L. Altice. 2011. Public health implications for adequate transitional care for HIV-infected prisoners: Five essential components. Clinical Infectious Diseases 53(5):469-479.