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Early Impact of the Patient Protection and Affordable Care Act on People Living With HIV

A Systematic Review

Ginossar, Tamar, PhD*; Van Meter, Lindsay, MPH, JD; Ali Shah, Sayyed Fawad, PhD; Bentley, Joshua M., PhD; Weiss, David, PhD; Oetzel, John G., PhD

Journal of the Association of Nurses in AIDS Care: May-June 2019 - Volume 30 - Issue 3 - p 259–269
doi: 10.1097/JNC.0000000000000079
Feature Article

The US Patient Protection and Affordable Care Act (ACA) was the most influential policy-related change to the care of people living with HIV in decades. We systematically searched and analyzed peer-reviewed, empirical research reporting on ACA-related aspects of HIV care post-ACA full implementation, finding 12 articles that met search criteria. The results revealed largely positive evidence regarding the ACA impact on people living with HIV, particularly on their health care coverage in Medicaid expansion states. More recent reporting included improvement in virologic suppression. However, early evidence has been somewhat fragmented, and important questions concerning the impact of the ACA on HIV care quality, patients, and providers remain unanswered. As the political struggle over the ACA continues, future analyses should use national- and state-level data to examine ACA impact on HIV care quality and patient-centered health outcomes to provide in-depth, holistic understanding of HIV care in the wake of this policy change.

Tamar Ginossar, PhD, is an Associate Professor, Department of Communication and Journalism, University of New Mexico, Albuquerque, New Mexico, USA. Lindsay Van Meter, MPH, JD, is a Lawyer, Albuquerque, New Mexico, USA. Sayyed Fawad Ali Shah, PhD, is an Assistant Professor, Department of Communication, Jacksonville State University, Jacksonville, Alabama, USA. Joshua M. Bentley, PhD, is an Assistant Professor, Department of Strategic Communication, Texas Christian University, Fort Worth, Texas, USA. David Weiss, PhD, is an Associate Professor, Department of Communication and Journalism, University of New Mexico, Albuquerque, New Mexico, USA. John G. Oetzel, PhD, is a Professor, University of Waikato, Hamilton, New Zealand.

Corresponding author: Tamar Ginossar, e-mail:

Sponsorships or competing interests that may be relevant to content are disclosed at the end of this article.

The Patient Protection and Affordable Care Act (ACA) was signed into law in March 2010 (P.L. 111–148), and its most critical provisions went into effect on January 1, 2014. It is likely the most influential policy-related change to the care of people living with HIV (PLWH) in the United Sates since the Ryan White HIV/AIDS Program (RWHAP) in the 1990s (Kates, 2013). Of PLWH who are in care nationally, the rates of medically uninsured individuals dropped from an estimated 22% to an estimated 14% (Kates & Lindsey, 2017). Although the ACA was intended to improve health care for all Americans, PLWH have unique care needs, and many uninsured PLWH had access to HIV-related services prior to the ACA. Understanding the ACA impact on care provided to PLWH is essential for securing the quality and effectiveness of services, especially as the U.S. President and Congress have begun taking legislative action that will impact ACA implementation. To date, however, no systematic review of the literature on the impact of the ACA on PLWH has been published. We examined the evidence on the impact of ACA implementation on PLWH and on HIV care. We begin by reviewing the major preimplementation expectations regarding ACA impact on services for PLWH.

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Expected Impact of Affordable Care Act on People Living With HIV

Numerous provisions of the ACA were aimed at increasing the number of insured individuals, provisions which were expected to benefit uninsured PLWH (Abara & Heiman, 2014). The Act prohibited private insurance companies from denying coverage due to preexisting conditions, including HIV. It qualified individuals with incomes between 100% and 400% of the federal poverty level for tax credits and subsidies to help pay for private insurance plans operated through the health insurance exchange (Abara & Heiman, 2014). The ACA eliminated annual and lifetime limits on health care coverage (Martin, Meehan, & Schackman, 2013), and allowed young adults to stay on their parents' private insurance plans until they were 26 years old (Lanier & Sutton, 2013). Furthermore, the ACA incentivized states to expand Medicaid; 31 states and the District of Columbia have done so (Kaiser Family Foundation, 2017). These changes were projected to increase health care coverage and access to antiretroviral therapy (ART) by PLWH (Abara & Heiman, 2014) and lead to better outcomes for PLWH (Goldman, Juday, Linthicum, Rosenblatt, & Seekins, 2014).

In addition to these advantages, researchers identified potential drawbacks of the ACA for certain PLWH. The ACA excludes legal immigrants from Medicaid during a 5-year waiting period and excludes undocumented immigrants entirely (Abara & Heiman, 2014). Some researchers also worried that the increase in health care benefits might result in an overwhelming demand on the health care workforce. Providers noted that the ACA does not cover wrap-around services, such as case management, despite their proven effectiveness in improving PLWH health outcomes (Hazelton et al., 2014). Scholars estimated that even after implementation of the ACA, out-of-pocket costs for HIV medication would remain high for PLWH insured by marketplace plans (Cahill, Mayer, & Boswell, 2015), which might act as a barrier to ART adherence. Additionally, approximately 43% of PLWH live in states that did not expand Medicaid (Crowley & Kates, 2012) and, thus, many of these individuals remain uninsured. The states that did not expand Medicaid were typically southern states in which the HIV care infrastructure and access to care were often weakest, factors likely to increase health–outcome inequities (Westmoreland, 2016).

Against the background of these mixed expectations, our systematic review explored research on ACA impact, identifying both the strength of the evidence and the areas for future study.

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We conducted a systematic search of the literature following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (Liberati et al., 2009; Moher et al., 2015). PubMed, MEDLINE, CINAHL Complete, Web of Science, and PsycINFO were searched using the keywords Ryan White, HIV, AIDS, and ACA or Affordable Care Act, with the conjunction “AND.” We also examined the references of the identified articles in search of additional relevant articles.

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Selection Criteria

To be included, an article had to be peer-reviewed and use quantitative or qualitative measures to explicitly measure the impact of ACA implementation on PLWH and/or on at least one aspect of health care provided to PLWH following the Act's full implementation in 2014. For instance, studies that measured health care coverage of PLWH before and after ACA implementation, compared coverage for care for PLWH, or examined health outcomes before and after ACA full implementation were included. Exclusion criteria were related to data collected before 2014 (prior to ACA full implementation), articles that did not directly examine an aspect of the ACA as it related to HIV care, and articles that were not empirical (nonprimary research). For instance, analyses that forecasted the effects of the ACA on PLWH based on data collected prior to ACA full implementation were excluded. Similarly, articles that discussed the ACA without considering its impact on PLWH or discretionary programs affecting the lives of PLWH, focused on just HIV or on HIV care beyond the context of the ACA, and conference presentations were also removed from the final selection. See Figure 1 for description of the process and the results.

Figure 1

Figure 1

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Data Extraction and Analysis of Articles

Four authors classified each article. Differences between coders were discussed with the team and final decisions were made by consensus. Articles were analyzed for study design, goal, data source, ACA components and outcomes measured, geographic location, care setting, outcomes addressed, and populations overlooked within the examined setting.

Articles were also categorized by overall conclusion. Studies were coded in terms of reporting on their overall conclusions: They were coded as positive when they documented improvement in services (such as higher rates of PLWH who were medically insured) or in health outcomes (for instance, lower viral load). Conversely, negative results were related to deterioration in outcomes or services following the ACA (for instance, increase in costs to clients). Studies were therefore coded as either positive, mixed-positive (when results were largely positive, with some negative results reported), neutral, or negative. Articles were also analyzed for the level of evidence they provided, following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (Liberati et al., 2009; Moher et al., 2015). See Table 1 for a breakdown of these levels.

Table 1-a

Table 1-a

Table 1-b

Table 1-b

Table 1-c

Table 1-c

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Final Selection

Our search resulted in a total of 509 articles. After 93 duplicate items were removed, the abstracts of 416 articles were dually reviewed using the inclusion criteria; 374 articles were excluded after this review. In the final phase, 42 full-length articles were assessed for selection. Twelve articles that met inclusion criteria were included in the study (Figure 1).

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Article Characteristics

The articles that met inclusion criteria were analyzed (Table 1). Of the 12 articles that met inclusion criteria, 10 reported that ACA implementation was associated with improvement in one or more aspects of care provided for PLWH, with no, or only a few, negative effects (Berry et al., 2016; Diepstra et al., 2017; Hellinger, 2015; Hood et al., 2017; Kay, Batey, & Mugavero, 2018; McManus, Rhodes, et al., 2016; McQuade, Raimondo, Phivilay-Bessette, Marak, & Loberti, 2015; Satre, Altschuler, et al., 2016). Three articles presented mixed-positive results (Satre, Altschuler, et al., 2016; Satre, Parthasarathy et al., 2016; Zamani-Hank, 2016). Two studies that examined characteristics of enrollees (Satre, Parthasarathy et al., 2016) and client perceptions and knowledge of the ACA (Rozin et al., 2015) were coded as neutral. No studies documented exclusively negative results of the ACA implementation on HIV care. See Table 1 for a breakdown of this analysis.

All articles reported quantitative measures. Evaluation of strength of design revealed that no study used a random clinical trial design. The strongest design included measuring outcomes before/after ACA full implementation with additional comparisons of states that expanded Medicaid to those that did not (Hellinger, 2015). Further, some studies that used before/after comparisons between expansion/nonexpansion states included states with idiosyncratic policies, such as New York (Berry et al., 2016) and Virginia (Hellinger, 2015; Hood et al., 2017). One study used before/after ACA implementation with three-group comparison in one state (McManus, Rhodes, et al., 2016). Other studies reported on before/after ACA implementation comparison of outcomes in one geographic area (Rozin et al., 2015; Satre, Altschuler, et al., 2016; Satre, Parthasarathy, et al., 2016) and single-period group comparison (Zamani-Hank, 2016). One article seemed to be a case study but did not provide sufficient information about its methods (McManus, Rhodes, et al., 2016).

Eleven of the articles applied secondary analyses of existing data sources that were available to the researchers. These included clinic-based data (Berry et al., 2016; Kay et al., 2018; Satre, Altschuler, et al., 2016; Satre, Parthasarathy, et al., 2016b), state-based data (Diepstra et al., 2017; Hellinger, 2015; McManus, Rhodes et al., 2016; McQuade et al., 2015), national data in conjunction with state-based data (McQuade et al., 2015), insurance carriers' formularies and HIV Drug Guide (Zamani-Hank, 2016), self-reported measures collected as part of the Medical Monitoring Project (Hood et al., 2017), and a variety of unspecified data sources (McManus, Rhodes, et al., 2016). Only one article collected original data (Rozin et al., 2015).

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The most-explored aspects of the ACA were related to health care insurance coverage. Four articles reporting quantitative measures of PLWH who were medically insured found that rates of PLWH who had insurance and of those who had Medicaid increased significantly following ACA implementation in expansion jurisdictions (Berry et al., 2016; Hood et al., 2017; McQuade et al., 2015; Satre, Altschuler, et al., 2016). An increase in insurance coverage and Medicaid was also observed in Virginia, a nonexpansion state, but not in the two other non-expansion states examined. Most of the respondents who had a change in insurance coverage reported no change to HIV care source and quality. The largest increase in costs for health care was reported by PLWH in two non-expansion states (Hood et al., 2017). Moreover, rates of RWHAP/uncompensated care decreased dramatically in care sites located in states that expanded Medicaid eligibility in contrast to an increase in non-expansion states (Hellinger, 2015). Private insurance coverage in nonexpansion states remained low despite some post-ACA increases, although no change in Medicaid coverage was observed (Berry et al., 2016).

Although Virginia did not expand Medicaid, implementation of the ACA brought significant changes to the administration of the state's AIDS Drug Assistance Program (ADAP), changes which were explored in two articles by McManus and colleagues (McManus, Rhodes, et al., 2016 and McManus, Rodney, Rhodes, Bailey, & Dillingham, 2016). Virginia enrolled approximately 76% of eligible ADAP clients into Qualified Health Plans (QHPs) by 2016. Enrolling PLWH into QHPs decreased costs to the state by nearly half compared with keeping patients on direct ADAP plans. Cost savings from rebates from pharmaceutical companies allowed Virginia to avoid reimplementation of a waitlist for ADAP benefits; further, the viral suppression rate for PLWH who transitioned to QHPs was higher than for those who stayed on direct ADAP (McManus, Rhodes, et al., 2016). Additionally, in another Virginia-based study (Diepstra et al., 2017), a positive correlation was reported between the number of RWHAP service classes (defined as “core medical services,” “supportive services,” and “direct or indirect provision of medications such as health-insurance premium or cost-sharing assistance” [p. 619]) received by patients and their rates of retention in care.

Patient health outcomes that were examined consisted of viral suppression (Diepstra et al., 2017; Kay et al., 2018; McManus, Rhodes, et al., 2016; Satre, Altschuler, et al., 2016; Satre, Parthasarathy, et al., 2016), retention in care (Diepstra et al., 2017; Kay et al., 2018), and hospitalization rates and morbidity at the time of hospitalization (Hellinger, 2015). The results documented positive associations between health outcomes and ACA implementation. See Table 1 for more information on outcome measures.

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Study Locations

No study explored the national impact of ACA implementation on PLWH. Three studies (Berry et al., 2016; Hellinger, 2015; Hood et al., 2017) used multistate data collected in the West (California, Hawaii, Oregon, Washington), Northeast (New Jersey, New York), and South (Maryland, Florida, Texas, Georgia, Kentucky). Midwest locations included Minnesota and Chicago, Illinois. Single-location studies focused on Virginia (Diepstra et al., 2017; McManus, Rhodes et al., 2016); Alabama (Kay et al., 2018); Rhode Island (McQuade et al., 2015); Omaha, Nebraska (Rozin et al., 2015); Wayne County, Michigan (Zamani-Hank, 2016); and Northern California (Satre, Altschuler et al., 2016; Satre, Parthasarathy et al., 2016). Overall, data were collected in at least one location in 17 states, representing 4 regions. The map in Figure 2 illustrates geographic locations of the primary research available on the impact of the ACA on PLWH.

Figure 2

Figure 2

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Our systematic review explored primary research based on data collected following full ACA implementation in January 2014. Overall, the ACA was found to have a positive impact on coverage available for PLWH in states that expanded Medicaid, whereas changes in rates of private insurance in these states were typically minimal. These findings support perceptions that Medicaid expansion was the single most important facet of the ACA for PLWH (Abara & Heiman, 2014). Improvements notwithstanding the disparities in coverage between expansion states and nonexpansion states raise concerns about the health of PLWH in non-expansion states. These findings support concerns that ACA-related inequities exacerbated disparities between PLWH in different states (Abara & Heiman, 2014). Lack of coverage and inequities in these states might take an additional toll on PLWH, health care teams, and the health care system, in general, due to high rates of uncompensated care.

Whereas some scholars and providers expressed concerns about the ACA-related impact on issues, such as cost to consumers, stress for the workforce, and limited availability of HIV specialty care, the only negative impact reported in published primary research concerned the high out-of-pocket cost of medication (Zamani-Hank, 2016). These findings were consistent with concerns raised by both clients (Rozin et al., 2015) and providers (Sood et al., 2014) prior to ACA implementation. However, the evidence regarding these high costs was limited by a reliance on a small jurisdiction (Zamani-Hank, 2016), and the author noted that she had to rely on estimated drug costs because actual costs were not readily available; therefore, the findings might not be generalizable to other states. These findings also suggest the difficulty for end users. If an experienced researcher reported facing difficulties accessing cost information, then PLWH and those who care for them, such as navigators and case managers, probably experience similar barriers to obtaining cost-related information.

Most of the studies that explored the effects of the ACA on PLWH used the implementation of the ACA as a quasi-intervention, using a before/after design, with three of the studies testing the impact of the ACA on PLWH by comparing states with different policies. As random clinical trials, which are considered the strongest design, are not possible in this context, these design choices were considered strong and allowed important observations about the impact of Medicaid expansion on PLWH coverage to emerge.

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Limitations and Research Gaps

The early impact of the ACA on PLWH emerged as positive, based on research with largely strong designs; nonetheless, we identified a few research gaps. The most obvious limitation of the research to date is that the evidence has been limited. In sharp contrast to the numerous analyses of pre-ACA implementation data and extant editorials, commentaries, and discussions published before and after the ACA rollout, only 12 empirical studies examined the impact of the ACA on PLWH and HIV care. It is likely that the relatively short time since ACA implementation, along with the typically extensive time frame needed for researchers to collect, analyze, and publish their results (Glasgow et al., 2012), is related to the paucity of studies we identified. A related limitation was the fact that most of the studies analyzed the first 6 months following ACA implementation; this relatively short time frame might not have been sufficient to reflect changes in insurance coverage or in care provided (Hood et al., 2017).

Our analysis also highlighted limitations in availability of national- and state-level data as a challenge to HIV care research, and, specifically, to assessing the impact of the ACA. For instance, estimates regarding the number of low-income, uninsured PLWH in non-expansion states have ranged from 46,618 to 79,314 (Snider et al., 2014). This lack of accurate data impedes research. Consequently, most of the studies used available data sources that provided only a partial picture of the ACA impact on HIV care, and no study was conducted to explore the impact of the ACA on PLWH on a national level. These data-related limitations were likely among the causes for the limited geographic focus of this research. Only 17 states were represented in the sample, and only parts of each state were included. Similarly, no studies explored ACA impact on specific communities whose members were at increased risk of experiencing barriers to care, such as rural populations (Albritton, Martinez, Gibson, Angley, & Grandelski, 2017; Pellowski, 2013), ethnic/racial minorities, PLWH experiencing homelessness, injection drug users, and those with serious mental health issues. Further, no study considered data from PLWH not engaged in HIV care or those unaware of their status.

The lack of analyses of quality of health care for PLWH following ACA implementation was a related, concerning gap. For example, although the ACA was expected to allow for better preventive services and non–HIV-related care for PLWH, no study examined the availability and quality of such services. Furthermore, no study explored the impact on RWHAP other than on ADAP, even though providers (Sood et al., 2014), researchers, and other stakeholders noted that the program remained important (Bradley et al., 2016; Cahill et al., 2015; Crowley & Kates, 2013; Diepstra et al., 2017). As analyses of health outcomes need more complex data that might be harder to assess, we hope that more research on this topic is in progress. As recent research reveals, gains in viral suppression contribute to improvement in ART uptake and adherence (Nance et al., 2018).

Our final observation relates to the gap in examining provider perspectives and experiences. Prior to ACA implementation, scholars examined perspectives of providers (Sood et al., 2014), including ADAP managers (Martin et al., 2013), although others raised concerns about the ACA impact on the workforce (Abara & Heiman, 2014). HIV researchers (Mugavero, Amico, Horn, & Thompson, 2013) anticipated that the ACA might change the composition of the HIV workforce and the process of HIV care engagement, asserting that monitoring those effects would be “imperative across jurisdictions and around the country” (p. 1170). In contrast to other health-related contexts, such as primary care (Getrich, García, Solares, & Kano, 2017), studies have not focused on HIV care providers since 2014.

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Future Research

Clearly, more research is needed to assess the full impact of the ACA on PLWH and the care provided to them. We concur with the scholar who suggested that data from the first 6 months of ACA expansion should be used as “a baseline against which future studies may be compared” (Hellinger, 2015, p. 4). Specifically, more evidence is needed on PLWH health outcomes, quality of care, ACA impact on specific populations of PLWH, and members of the HIV care workforce, including nurses. We elaborate on these conclusions below.

The encouraging results regarding PLWH's viral suppression and morbidity while hospitalized (Berry et al., 2016) highlighted the need for more evidence on HIV-related health outcomes following ACA implementation. Measures of health outcomes, including viral suppression, medication adherence, and quality of life, should be further applied. Similarly, although two studies (Diepstra et al., 2017; Kay et al., 2018) found that the ACA impacted PLWH's retention in health care, an essential element in national efforts to assess the continuum of care for PLWH (Crowley & Kates, 2012), additional research in this area is needed. In summary, expanding research on the effects of the ACA on PLWH both geographically and methodologically has the potential to overcome a few of the limitations noted in the extant literature, such as potential confounding factors related to different demographics in the various jurisdictions examined (Hood et al., 2017), potential bias from reliance on self-reported measures, and limited external validity.

The research gaps we identified lend further support to calls for greater attention to HIV care delivery models, including the HIV workforce in diverse communities (Kimmel et al., 2016). To address this challenge, it is important to include patient and provider perspectives and experiences. These perspectives would shed light on additional issues, including the relationship between ACA-related information provisions and exchanges, decision making, and health outcomes. Extending the scope and focus of primary research on the ACA impact on PLWH and HIV care is important to better understand this policy reform and provide directions for future policy makers and care providers. In particular, research should include the perspectives of nurses who are uniquely positioned to advance such research efforts. In the following section, we discuss these implications.

Finally, our research is not without limitations that should also be addressed in future studies. Although we used a rigorous search strategy, it is possible that we missed relevant data, and particularly data provided in unpublished studies. Future research should explore further evidence of the impact of the ACA on PLWH and HIV care.

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Nursing Implications

The omission of HIV health care provider perspectives and experiences with ACA implementation and its impact on HIV care and PLWH as described above is significant. Specifically, nurses' associations, including the Association of Nurses in AIDS Care, consistently supported the ACA during the extended political struggles that took place both before and after the law passed in Congress (Bradley-Springer, 2015). The Obama Administration was reported to have understood that nurses were at the core of the U.S. health care system and to have appreciated their invaluable roles in providing and expanding access to quality care (Treston, 2013). Moreover, the role of nurses in ensuring access to quality care for PLWH has been a part of Association of Nurses in AIDS Care's policy focus (Bradley-Springer, 2015), and nurses play important roles in HIV-related advocacy (Betancourt, 2018).

To date, however, no primary research has examined nurse, or other health care provider, perspectives and experiences post-ACA. In view of the shortage of HIV specialty care providers (Relf & Harmon, 2016), the need to train new providers, including nurses, in HIV care competencies (McGee, Relf & Harmon, 2016), and high burnout rates among HIV providers prior to ACA enactment (Ginossar et al., 2014), conducting such investigations is essential. The U.S. nurses have documented pivotal roles not only in HIV-related advocacy but also in education, care, and support for PLWH. Nurses often connect newly diagnosed patients to HIV care, retain PLWH in care, and provide them access to treatment. In all of these roles, nurses continue to positively impact the HIV epidemic (Starr & Bradley-Springer, 2014). Hence, they should both be informed about, and contribute to, the knowledge of the impact of the ACA on HIV care and PLWH.

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In view of the persistent political struggles over the future of the ACA, understanding the impact of its implementation on diverse communities and in various health care contexts remains paramount. Exploring the effects of these struggles on PLWH is of particular significance in view of their complex health care needs and the services provided to them under the RWHAP prior to and since ACA implementation. Our results reveal an overall positive impact of ACA implementation on medical insurance coverage of PLWH as well as emerging findings on related positive health outcomes. At the same time, these findings also indicate that concerns regarding high out-of-pocket expenses are valid. Given the financial limitations affecting many PLWH, these concerns and their impacts on engagement in care should be assessed.

Perhaps, the major conclusion of this review is related to the need to expand the number of empirical studies on the topic and the range of contexts in which they are conducted. Specifically, more studies should explore the impact of the ACA on PLWH who have specific health care needs, such as transwomen, those with unstable housing, individuals needing or receiving mental health care, and others who have traditionally been at risk for having unmet needs and for dropping out of care. Such studies should guide policy makers in decisions regarding HIV care.

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The authors report no real or perceived vested interests related to this article that could be construed as a conflict of interest.

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Key Considerations

  • ACA was expected to have largely positive impacts on PLWH prior to implementation, with expansion of health care coverage as the main benefit. There were, however, concerns regarding increased costs of care and potential loss of HIV specialty care due to referrals of PLWH to primary care.
  • Postimplementation, the evidence has suggested that insurance coverage increased and uncompensated care decreased in states with Medicaid expansion.
  • The available evidence suggests that ACA implementation has been positively associated with health outcomes including viral suppression.
  • More evidence about the impact of ACA implementation on health outcomes as well as on quality of care in more geographic locations as well as in specific demographics, such as women, transgender persons, rural persons, and immigrants, is needed.
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    health care insurance; health care reform; Patient Protection and ACA; people living with HIV; RWHAP; systematic review

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