Health-Harming Legal Needs Identified by People with HIV: Data from a Medical-Legal Partnership Study to Improve HIV Care Continuum Outcomes

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Omar Martinez Abstract—Introduction: People with HIV (PWH) often face health-harming legal needs that impede access to and retention in HIV care. The Organizational Partnerships for Healthy Living (OPAHL) intervention addresses these gaps by integrating legal services with health care. Methods: This mixed-methods study was conducted at two health centers in Philadelphia, PA, from October 20, 2022 through 2024. The trial aims to: (1) refine the OPAHL intervention prototype for PWH with detectable viral loads; and (2) test the feasibility, acceptability, and preliminary effects of OPAHL, which includes (a) comprehensive partner training; (b) screening for le-gal concerns; and (c) access to legal services. Key legal concerns were identified from 111 participants through quantitative and qualitative analyses of patient-reported responses and attorney case summaries. Results: Major findings from the preliminary dataset reflect distinct categories of legal concerns reported by participants, including Personal/Advanced Care Planning (n = 50), Other Legal Concerns (n = 26), Unsafe Housing/Repairs (n = 23), and Eviction or Threat of Losing Home (n = 15). Conclusions: Findings highlight the diverse and complex legal concerns impacting PWH, particularly in relation to personal and housing-related Samantha J. is with the School of Social Welfare, Stony Brook University, United States.

HIV: Data from a Medical-Legal Partnership Study to

Improve HIV Care Continuum Outcomes

Samantha J. Morton, Andrew Maude, Theresa Brabson, Hervette Nkwihoreze, Robin Davison, Miguel Muñoz-Laboy, planning. Understanding and addressing these challenges is crucial for developing targeted interventions to strengthen the HIV care continuum. Index Terms— Health Inequities; Health Services Accessibility; HIV; Implementation Science; Quality of Care.

INTRODUCTION

The movement for health equity – the state in which everyone has a fair and just opportunity to attain their highest level of health [1] – continues to face tremendous challenges both globally and in the United States. For too many people, structural barriers to health and well-being are entrenched and formidable. Meanwhile, the specific barriers confront-ing one population are not the same for another – there is no “one size fits all” approach to health equity advancement [2]. It follows that before design-ing health equity interventions, we must first gain an understanding the of specific barriers impacting specific populations. This analysis is concerned with barriers to care and health for people with HIV (PWH). PWH face unique barriers to health care and optimal health outcomes, including some that can be eliminated through legal advocacy [3-6]. Regrettably, most patients are unaware that some barriers to care (and health) may constitute legal rights violations, or may be prevented through proactive legal measures. Current evidence affirms that some HIV care continuum outcomes are tied, in whole or in part, to factors enshrined in law and/or public policy [7- 9]. These confirmed barriers have propelled this research. We hypothesize that PWH experience a range of health-harming legal needs (HHLN) [10] and that improved access to legal services can help to resolve these, thereby positively impacting access to care as well as health outcomes. Yet, legal support often is unaffordable or otherwise inaccessible to PWH – as well as to many more people and populations. Mean-while, medical-legal partnership (MLP) strategies, deployed in some healthcare settings since the early

1990s, are not broadly or universally deployed in HIV care settings across the U.S. According to the Administration for Children and Families, an MLP program “integrates civil legal aid services alongside healthcare services to mitigate complex social conditions that may impact the health outcomes of individuals, families, and communities” [11]. This paper reports on quantitative and qualitative baseline data from a NIMH-sponsored cluster randomized controlled trial. Currently underway, OPAHL (Organizational Partnerships for Healthy Living) seeks to understand if and how an MLP intervention improves HIV care continuum outcomes among people receiving care at a federally qualified health center (FQHC) in Philadelphia, Pennsylvania. Key implementation partners include TPAC (The Philadelphia AIDS Consortium, the intervention site), Newlands Health (the control site), the Legal Clinic for the Disabled (the legal partner organization), and the Community Collaborative Board (CCB), a body that ensures the study accords with community-based participatory research (CBRP) principles. The two primary aims of the OPAHL trial are to: (1) refine the intervention prototype for implementation with PWH with detectible viral loads; and (2) test the feasibility, acceptability, and preliminary effect sizes of the intervention. The objectives of this paper are to: (1) assess the prevalence and specific types of legal concerns impacting PWH; (2) identify health-harming legal needs that directly or indirectly impact HIV care continuum outcomes among PWH; and (3) document tailored legal interventions and supportive services aimed at addressing health-harming legal needs (HHLN) impacting PWH.

METHODS

Description of the OPAHL intervention. The OPAHL intervention is comprised of three components:

1. Standardized OPAHL training for all partners on intersections among social determinants of health, legal rights and remedies, HIV care access and health outcomes, and operational imperatives of cross-sector collaboration; 2. Deployment of a unique screening tool for patients geared to detecting HHLN alongside health-related social needs, as well as a companion administration protocol that fosters coordinated hand-off of patients, if they wish, to the legal partner for an on-site intake interview at the health center; and 3. Access to direct legal services in several legal domains through the legal partner organization. Direct legal services take two forms: case handling (legal representation) for individual patients at no cost, and facilitation of on-site Know Your Rights sessions for the health center community. During the timeframe reflected in this preliminary dataset, the legal partner conducted two Know Your Rights training sessions at the intervention site, including patients and staff, cover-ing “Tenant Rights & Housing Issues” (12/8/22) and “Advanced Planning” (2/9/23). Study methodology Sample and patient eligibility criteria. Under this organizational-level paired matched design, all eligible PWH receiving care at each health center (one assigned to the intervention and the other to the control) were included in the study over a 6-month period. Patients were eligible to enroll if they met each of the following five criteria: (1) living with HIV (as confirmed by medical record); (2) aged 18 years or older; (3) HIV viral load of more than 200 copies/mL (as confirmed by medical record); (4) willing and able to consent to participate in the trial (including authorizing access to their medical records at the health center); and (5) no intent to relocate within the 6 months following enrollment. Exclusions included patients who did not meet the above criteria and individuals who self-reported having been sentenced to serve time in state or federal custody, with a sentence to begin within 6 months from proposed enrollment. All research participants were engaged in informed consent procedures enabling collection of data through a longitudinal design. Prospective research subjects were invited to participate in the trial in accordance with all requirements of the University of Central Florida Institutional Review Board. Health organization eligibility criteria. The selected health organization: (1) served more than 50 PWH in the year prior to commencing enrollment for the trial; (2) did not facilitate patient access to legal services either via a co-located partnership or via systematic referrals to external resources; and (3) had capacity, through its EMR, to: (a) collect HIV care continuum outcome indicators; (b) collect comprehensive primary care medical data; and (c) collect data on appointments, duration, and types of contact with services; and (4) participated in the trial in accordance with HIPAA-compliant standards. Comparison arm description (Standard of Care). The health organization selected to be the comparison arm only offers patients systematic referral to external legal services. Data sources. The data presented below relates to the second and third components of the OPAHL intervention: screening of patients for legal concerns, and access to direct legal services. There are two distinct data sources: (1) screening data from 111 patients in the intervention and control arms, collected

Figure 1. OPAHL resource guide Attorney Case Summaries. It is standard case management practice in the provision of legal services to memorialize a client’s expressed legal concerns. If any form of legal representation is offered or provided (ranging from verbal advice and counsel to direct representation in a court or administrative proceeding), at the time the case is closed, it is considered best practice to memorialize the outcome(s) as well as specific services rendered. In the context of this trial, the study team requested that the legal partner organization, the Legal Clinic for the Disabled, between October 20, 2022 and October 26, 2023; and (2) 26 case summaries by the legal provider in the intervention arm, collected between October 22, 2022 and September 29, 2023. We revisit the sample size later in this paper in the context of Limitations. Patient screening data. Screening of participants consisted of flexible, conversational administration of the OPAHL screening instrument (see Figure 1), which poses questions on nearly twenty areas of health-related social need (HRSN) with legal dimensions (characterized in the OPAHL protocol as “health-harming legal needs”).

prepare structured “case summaries” with respect to closed cases only (meaning that a case that is still “open” does not yet generate a companion case sum-mary). The standardized Attorney Case Summary form, found below at Figure 2, prompts the dedicated attorney to describe key substantive information with respect to each study enrollee who completes a legal intake interview. From October 20, 2022 through September 29, 2023, the legal partner organization designated 26 cases as “closed” and generated a companion, de-identified Attorney Case Summary for each patient with an associated case.

[REDACTED] MLP Attorney Case Summary Member Name:

Number of Individuals in Member Household:

Keystone First /Medicaid IDs:

LCD Client Name:

LCD ID

Referral Information:

Date of Intake:

Presenting Needs (At Time of Intake):

Total # of Successful Interventions by LCD:

Case Summary:

Case Closure Date:

Outcome / Resolution:

Outstanding issues:

Attorney name:

Date of completion:

Figure 2. Attorney case summary form Data analysis – Patient Screening. Quantitative data generated from the screening process was analyzed using basic, descriptive statistics to determine frequency and burden (proportion) of legal barriers for study participants. Data analysis – Case Summaries. Case summaries were coded using standard open qualitative methods to identify major themes and patterns. This approach allows for a nuanced understanding of the complex legal needs experienced by PWH. Two members of the research team, who are licensed attorneys, independently reviewed and analyzed the case summaries. The involvement of licensed attorneys ensures that the analysis is grounded in legal expertise while maintaining research integrity by excluding legal partner organization staff from the data analysis process. Given the high prevalence of positive screens in specific domains, we focused our qualitative analysis on Personal Planning/Advanced Care Planning and Living Situations. These areas were chosen due to their significant representation in patient-reported concerns, as illustrated in Figures 3 and 4. "Other"related Attorney Case Summaries were excluded from this analysis due to the small numbers and the difficulty in forming meaningful hypotheses from such limited data. To further enhance the depth of our analysis, we employed a rapid qualitative analysis approach. This method involves the expedited coding and synthesis of qualitative data to quickly generate insights while maintaining rigor and validity. Rapid qualitative analysis is particularly useful in health services re-search where timely results are crucial for informing practice and policy [12]. Our goal in this qualitative review was to illuminate the specific features of concerns expressed by PWH regarding Personal Planning/Advanced Care Planning and their Living Situations. By focusing on these domains, we aimed to uncover detailed insights into the legal challenges faced by PWH and how these impact their overall health and well-being. This analysis provides a richer context for understanding the intersection of legal and health needs, ultimately informing targeted interventions to improve the HIV care continuum [13].

RESULTS

Descriptive data on participants. This study provides descriptive quantitative baseline screening data from 111 patients in the intervention and control arms, and qualitative data from 26 case summaries generated by an attorney providing legal services in the intervention context. Barriers to care and health reported by PWH. Enrollment for the study began on October 20, 2022. By October 26, 2023, the study had enrolled 111 patients. As of that date, self-reported “positive screens” among enrollees – tied to administration of or a family member) (n = 21)  Transportation to Appointments (n = 20)

“We at [REDACTED] want to make sure you have all of the help and sup-port you need. If you want help with any of the topics listed below, please let us know by checking them off. We have an on-site team, including FREE le-gal help, to help you and provide you with other information about other resources available to you.”

The “Other” category represents the second-highest volume of positive screens. Raw data reflects the following patient-reported concerns:

 “Uncle passed away and would like to seek legal counsel.”  “They have refused to give me the security de-posit.”

the OPAHL screening tool – were as follows in Table 1 (tracking the exact sequence of questions in the screening instrument). The top five (5) categories of concern as classified by the OPAHL Resource Guide and reported by study enrollees were:

 Personal Planning, Advanced Care Planning

(health care, financial power of attorney, living will, etc.) (n = 50)  Other (n = 26)  Unsafe Housing or Repairs (n = 23)  Emotional or Behavioral Concerns (for you

N %

1. Food Resources 17 2. Utility Bills or Shut-off Notices 14 3. Transportation to Appointments 20 4. School or Childcare Issues 2 5. Health Insurance 4 6. Free Tax Preparation 1 7. Emotional or Behavioral Concerns (for you or a family member) 21 8. Safety Issues (for you or a family member) 8 9. Eviction or Threat of Losing Home 15 10. Unsafe Housing or Repairs 23 11. Custody 3 12. Child Support 0 13. Separation or Divorce 0 14. Immigration 5 15. Social Security Benefits 15 16. Employment/Unemployment 9 17. Other Benefits (WIC/SNAP/Cash) 8 18. Personal Planning, Advanced Care Planning (health care, financial power of attorney

, living will, etc.) 50

19. Other: ____________________________________________________________ 26 Total # positive screens 241

 “The participant was attacked in a store and would like to pursue legal action.”  “The house is in foreclosure and left the house to us. The brother is the executive of the state. There are two wills and we need to figure out. We need to go over those wills.”

 “Student loans”  “Social Security”  “Rental Assistance”  “Rent”  “Name change and legal issues”  “Name change”  “Medical insurance for minor children”  “Medical insurance claims”  “Life insurance”  “Legal name change”  “Landlord tenant issues”  “Identity theft”  “Housing”  “Employment discrimination, potential discrimination because of religion, fired at job because she was praying”  “Employment”  “Custody issues with the mother; her sister took her mother”  “Criminal case [expunge]ment, how to deal with the cops during the stop and frisk”

60Personal Planning, Advanced Care PlanningOtherUnsafe Housing or RepairsEmotional or Behavioral ConcernsTransportation to AppointmentsFood ResourcesEviction or Threat of Losing HomeSocial Security BenefitsUtility Bills or Shut-off NoticesEmployment/UnemploymentSafety IssuesOther Benefits (WIC/SNAP/Cash)Health InsuranceCustodySchool or Childcare IssuesFree Tax PreparationChild SupportSeparation or Divorce

N = positive screens

 “Child support and DNA for baby”  “Charged on my record and would like to get it [expung]ed”  “Ceiling in previous apartment fel[l] on me.

I would like to speak with an attorney about it.”  “A motor vehicle accident that occurred to me.”  “12 month lease, unable to pay rent; would like to discuss with the lawyer if I can break my lease because [I] can’t afford current rent.” Some of these “Other” concerns appear to fall within existing OPAHL screening instrument categories, while others do not. At least four of these free text “Other” responses align with Personal Planning, Advanced Care Planning, while at least seven align with housing-related questions (Eviction or Threat of Losing Home; Unsafe Housing or Repairs). Figure 3, below, depicts the distribution of positive screens in descending order of prevalence.

Figure 3. Distribution of positive screens, from high to low

Figure 3, above, depicts the prevalence of screening topics based on the OPAHL screening instrument categories as-is. However, the ninth and tenth questions in the OPAHL tool fall within a broader, standardized domain of health-related social need now described by the Centers for Medicare & Medicaid Services as “Living Situation” [14]. When we

60Personal Planning, Advanced Care PlanningLiving SituationOtherEmotional or Behavioral ConcernsTransportation to AppointmentsFood ResourcesSocial Security BenefitsUtility Bills or Shut-off NoticesEmployment/UnemploymentSafety IssuesOther Benefits (WIC/SNAP/Cash)Health InsuranceCustodySchool or Childcare IssuesFree Tax PreparationChild SupportSeparation or Divorce consolidation of "living situation" categories Barriers to Care and Health Observed in Attorney Case Summaries. From October 20, 2022 through September 29, 2023, the legal partner designated 26 cases “closed” and generated a de-identified companion Attorney Case Summary for each subject with an associated case. At this preliminary stage of study enrollment, implementation, and data analysis, we opted to review any raw qualitative data from the Attorney Case Summaries that fell within three screening domains: (1) Personal Planning, Advanced Care Planning (n = 5 related Attorney Case Summaries); (2) Unsafe Housing or Repairs (n = 4 related Attorney Case Summaries); and (3) Eviction re-analyzed the screening results, now combining the ninth and tenth questions – regarding Unsafe Housing or Repairs and Eviction or Threat of Losing Home – as a single category, the prevalence data shifted as reflected below in Figure 4. By this modified analysis, Living Situation is the second-highest patient-reported category of concern (n = 38).

N = positive screens

Figure 4. Distribution of positive screens, from high to low – or Threat of Losing Home (n = 1 related Attorney Case Summary).

We selected for analysis only Personal Planning/Advanced Care Planning and the consolidated, CMS-aligned category of Living Situation (reflect-ing Unsafe Housing or Repairs and Eviction or Threat of Losing Home) because of their high prevalence in patient-reported positive screens, per Figures 3 and 4, above. We excluded “Other”-related qualitative data due to challenges in developing hypotheses based on such small numbers. Our goal in this qualitative review was to illuminate specific features of concerns expressed by PWH regarding Personal

/Advanced Care Planning and their Living Situation. We present this detailed information in Appendix 1, including:

 Screening topics prioritized for analysis and tied to Figure 1 (OPAHL screening tool).  De-identified excerpts from Attorney Case

Summary forms tied to the prioritized screening domain.  Qualitative analysis focused on key words, observations, and themes appearing in the forms.

DISCUSSION

Key result: Prevalence of Personal Planning/Advanced Care Planning and Living Situation Legal Concerns Disclosed by PWH. Participants ex-pressed greatest concern with respect to Personal Planning/Advanced Care Planning, a domain that encompasses a range of high-stakes decisions involving one’s financial, medical, and related affairs and autonomy. This domain generated significantly higher positive screens (n = 50) than that with the second-highest number of positive screens. Paired with the Attorney Case Summary data, we know that five (5) study enrollees with questions about this domain sought and received legal services at no cost relating to: power of attorney (a form of legal decision-making authority); wills; advanced healthcare directives, including living wills; and financial authority designations, such as naming of bank account beneficiaries. The substantial rate of positive screens in this do-main of legal concern can be attributed to several interconnected factors. A key explanation lies in the characteristics of the study participants. Most of them reside in underserved communities in Philadelphia, where systemic barriers, such as limited access to legal services, are pervasive. These communities also contend with rapid gentrification, which exacerbates social and structural inequalities. Gentrification often displaces long-term residents, drives up housing costs, and intensifies economic instability—all of which compound the legal and health care challenges faced by individuals in these communities [15-17]. These structural inequities shape participants’ perspectives on end-of-life care and influence their broader health care decision-making processes, creating a landscape where legal concerns are both prevalent and complex. Another significant factor is the culture of care at the health clinic participating in this study. The clinic fosters a high-trust, patient-centered environment that prioritizes the well-being and comfort of its patients. In such a setting, people with HIV (PWH) are more likely to feel safe disclosing highly sensitive information about their life goals, health concerns, and legal needs. This culture of trust cultivates open, meaningful conversations, enabling patients to share issues they might withhold in less supportive environments [18, 19]. The supportive dynamic between patients and health care providers likely explains the elevated rate of positive screens, as patients feel encouraged to discuss their full spectrum of concerns. The Know Your Rights training conducted at the intervention site also played a pivotal role. These workshops were not limited to the clinic’s patient population, but were extended to the broader community through targeted outreach efforts. This pro-active approach helped raise awareness and expanded the reach of the training, offering accessible resources and empowering individuals with knowledge about their legal rights. By fostering trust and engagement among community members, these initiatives likely influenced participants’ willingness to recognize and disclose legal concerns during the screening process. It is also important to consider the historical context. Many PWH have experienced alienation, stigma, or discrimination in health care settings, which has of-ten inhibited full and open communication [20-23]. This historical mistrust underscores the significance of environments that actively counteract these pat-terns. A clinic culture that fosters trust and respect, combined with community-based educational efforts, creates the conditions necessary for individuals to voice concerns that might otherwise remain unspoken. Together, these factors—participant demographics, the clinic’s high-trust environment, community-wide outreach efforts, and the broader historical context—help explain the substantial rate of positive screens in this domain. Addressing these issues holistically highlights the importance of integrating structural, cultural, and community-level interventions to enhance both legal and health care outcomes. In addition to these structural dynamics, additional variables may be operating. First, it is likely that PWH have had conversations about mortality with clinicians, family and friends in ways that people not living with chronic serious illness have not. They may be more attuned to questions about end-of-life decision-making than others. (Indeed, in one in-stance, a participant raised questions about funeral planning.)

Second, estate planning legal services are expensive and often financially out of reach. In addition, the complex vocabulary (words like “estate,” “probate,” and “beneficiaries”) can pose barriers to defining one’s question(s) and finding responsive resources. This is consistent with literature documenting that those living in low-opportunity areas have lower odds of conducting advanced care planning com-pared with those in neighborhoods with high socioeconomic status [24]. Our study participants were recruited and engaged from an urban neighborhood in a state (Pennsylvania) that ranks 34th for “Attorney Access” nationally (n = 52, including 50 states, Puerto Rico, and the District of Columbia) [25]. Finally, practically speaking, nearly all adults in the U.S. would benefit from proactive advice on financial, medical, and end-of-life decision-making; mortality is universal and this kind of anticipatory planning is a valuable tool at a population level (as op-posed to a legal response to a legal violation). That their Living Situation was reported to be a concern by a substantial number of study participants was not surprising to the research team. Barriers to affordable, habitable housing are a well-documented national phenomenon in the U.S [26]. Meanwhile, there is a substantial evidence base describing the nexus between housing instability and access to care as well as poor health outcomes, both generally [27] and for PWH, for whom the rigors of HIV care can be easily disrupted by housing instability and homelessness [28]. Key result: Prevalence of “Other” Legal Concerns Disclosed by PWH. Significantly, the second-high-est domain of positive screens was “Other.” As described above, a non-trivial number of the free-text responses submitted under the “Other” domain aligned with existing topics contained in the screen-ing tool, specifically Personal Planning/Advanced Care Planning, as well as Eviction or Threat of Los-ing Home and Unsafe Housing or Repairs. We hypothesize that this is a byproduct of several possible factors:

 The conversational nature of the screening encounter (an intentional feature of the study design intended to promote trust- and relationship-building between FQHC staff and patients) may undermine the precision with which positive screens are documented. The intervention’s commitment to patient-centered screening administration – as opposed to a “check-box, check-out” encounter – may prompt staff to record patient concerns in de-tail under “Other” as opposed to classifying them under an existing screening topic.  Patients may not see (or hear) their experiences reflected in the language of the OPAHL screening instrument and its categories. Therefore, “Other” may be checked to honor their individual expression of their concerns.  The boundary line between health-related social needs and health-harming legal needs is complicated. Patients may not interpret their goals and needs to be “legal” in nature; conversely, they may perceive the screening encounter to be interested only in what is fundamentally “legal.” This may impact when and whether “Other” is selected rather than indicating a positive screen for an exist-ing, specific domain. We look forward to additional data analysis that can shed light on future screening psychometrics strategies once the study concludes and all data is available. Key result: Impact of Legal Services Provision on Personal Planning/Advanced Care Planning Concerns and Living Situation-aligned Legal Concerns Disclosed by PWH. Analysis of the qualitative data contained in the Attorney Case Summary forms led to identification of several types of legal services that helped to eliminate a patient-reported legal concern. In the Personal Planning/Advanced Care Planning context, these services included, but were not limited to:

 Advising a PWH on the value of a power of attorney document and preparing a tailored one for them.  Advising a PWH who was confronting mortality

-related concerns on the complex legal considerations relating to preparation of a will, planning for funeral expenses, and preparing to relinquish custody of a grandchild.  Advising a PWH on the complex legal considerations relating to receipt of a personal injury settlement, preparation of a will, modification of bank account beneficiary designations, and potential implications for eligibility for SSA-administered benefits.  Advising a PWH on the complex legal considerations relating to estate planning (preparation of a will specifically) and eligibility for SSDI benefits in a re-certification con-text.

 Advising a PWH on the range of advanced healthcare directives available to them and preparing a tailored advanced healthcare directive for them. Key result: Impact of Legal Services Provision on Living Situation Concerns Disclosed by PWH. The data also identified several types of legal services that helped (or could help) to eliminate a patient-reported legal concern. These services included, but are not limited to:  Advising a PWH on their legal rights to terminate

(and/or not renew) a rental agreement and preparing a letter that the individual could transmit to their landlord to document the assertion of those rights.  Advising a PWH on their legal rights (both in general and as an immigrant) in connection with a complex set of legal concerns, including risk of eviction due to non-payment of rent, housing conditions that may violate applicable sanitary/habitability codes, and eligibility for public benefits that could bolster household income.  Advising a PWH on their legal rights as a tenant to seek remediation of unsanitary/un-inhabitable conditions in their rental unit and offering to draft an advocacy communication to the landlord. With respect to the latter two Key Results, these positive impacts were generated through a study design that guaranteed basic legal support for all intervention subjects. However, this does not reflect reality for most PWH in the U.S. Securing legal services in the U.S. is frequently constrained by, among other things, financial cost, transportation and language barriers, and uncertainty about the value of legal re-sources [29]. In the context of HIV care, the data presented here suggest that an MLP strategy can be an effective access-to-justice promotion tool for PWH. Other access-to-justice levers that could be considered or integrated with MLP for PWH encompass a wide array of innovative and community-centered approaches. Legal services organization initiatives, which often provide targeted support to underserved populations, can help bridge the gap for PWH who face barriers to traditional legal services. Pro bono programs (where attorneys volunteer their services) and low bono programs (offering reduced-fee legal services) are another mechanism to increase access to justice for PWH. These programs can be tailored to address the unique legal needs of this population, such as assistance with housing instability, discrimination cases, or navigating healthcare benefits. Sliding-scale legal fee structures are another tool, enabling legal service costs to be adjusted based on the client’s income and financial circumstances. Additionally, charitable assistance funds dedicated to supporting legal services for PWH can provide financial grants or subsidies to cover legal fees, ensuring that cost is not a barrier to accessing necessary legal help. These strategies, especially when integrated into an MLP framework, can create a comprehensive ecosystem of support for PWH. Relationship to prior studies. This is one of the first rigorous studies that analyzes (a) the prevalence of barriers to care/health for PWH that may be amenable to legal advocacy; and (b) the ways in which le-gal concerns impact access to care and health out-comes for PWH. While related studies have been conducted in other chronic disease contexts and with other marginalized populations [30], this study involving PWH is a pioneering effort. Limitations and efforts to address/mitigate. The study has several limitations. First, it was con-strained by a relatively small sample size, which may limit the generalizability of the findings to broader populations of PWH. The results may not fully represent the diversity of, or predominance of, legal concerns among the larger community of PWH. Second, participants were recruited from only two healthcare facilities, potentially introducing selection bias. Third, the study’s timeframe may not be sufficient to capture the long-term effects of legal interventions on HIV care continuum outcomes. Longitudinal data over an extended period could provide a more comprehensive understanding of the sustained impact of legal services as a care enhancement. Fourth, the study relied on self-reported data regarding legal concerns. This could introduce recall bias or social desirability bias, where participants might underreport or overreport information. Fifth, resource limitations might have impacted the scope of the study, potentially restricting the depth of legal interventions or comprehensive data collection methods that could have been employed. Implications for practice, policy, and research. These results point to the importance of future re-search exploring how Personal Planning/Advanced Care Planning and Living Situation challenges operate to present barriers to health care and positive health outcomes for PWH. The results also point to the likely wisdom of deeper investment in strategies that can mitigate or eliminate barriers to patient-centered personal/advanced care planning and housing stability for PWH. In addition, more granularly, the results indicate that further refinement of the OPAHL Resource Guide (screening tool) and OPAHL Attorney Case Summary form – both in practice and in research contexts -- likely can illuminate data that would be valuable to future intervention design, implementation, efficacy, and cost-effectiveness. Analysis of the OPAHL Resource Guide (Figure 1) – the study’s non-validated screening instrument for both health-related social needs (HRSN) and health-harming legal needs (HHLN) – suggests that the tool may be highly sensitive for detecting health-related social needs (HRSN), but insufficiently sensitive and specific for health-harming legal needs (HHLN), resolution of which requires trained attorneys as opposed to other para/professional actors. Future practice, policy, and research will benefit from identification of – or development of – sensitive and specific screening tools to detect HHLN. Analysis of the Attorney Case Summaries confirms that scarce and valuable legal services were delivered to study participants in a range of high-stakes contexts. This raises yet more questions to be explored. In the OPAHL intervention context, a sum-mary form only can be generated after the following events have occurred: patient enrollment, screening, detection of positive screens, offer of legal service referral, acceptance of said referral invitation, legal intake interview, and case closure by the attorney. The above conditions are a floor of legal support facilitation, not a ceiling. Many types of legal services can be provided between the legal intake interview phase and case closure. Yet, as a data collection mechanism, the Attorney Case Summary form does not render visible when and how actual legal services were provided; the form merely confirms that some type of legal service was provided. Refining this form could promote future learning regarding, for instance:

 The time and effort involved in legal intervention

, overall and broken down by function;

 Whether the legal intake interview was pri- marily a “legal diagnostic” encounter, or whether it also functioned as an active legal services encounter. Historically, legal intake interviews have not been recognized a priori as a form of legal service. Often, the inter-view enables discernment of the specific le-gal questions or problems the individual may have, and whether the intaking organization has the relevant expertise and capacity. Given general resource constraints in both health care and public interest law, collecting data on how this interview encounter is leveraged to benefit patients/clients could have powerful implications for future cost-benefit studies. Another question raised by the qualitative analysis relates to the amenability of the participants’ legal concerns to legal resolution based on state or terri-tory of residence. It is possible the estate planning successes and housing advocacy strategies reflected in Appendix 1 were linked to favorable state laws specific to Pennsylvania.

CONCLUSION

This study provides essential baseline data on barriers to care and health experienced by PWH that may be addressed through legal advocacy. By examining quantitative screening data from 111 participants across both intervention and control arms, and qualitative data from 26 case summaries by legal providers in the intervention arm, the study highlights a range of concerns experienced by PWH. The OPAHL screening data identified Personal Planning/Advanced Care Planning as the most prevalent concern among participants, followed by Living Situation. These findings underscore the substantial challenges faced by PWH in maintaining safe and stable housing and planning for complex medical, financial, and familial decisions. They also highlight the structural context in which PWH at-tempt to access care and improve their health out-comes. These insights point to the need for individual-level access to legal services in health clinics, as well as larger-scale policy and system changes that promote greater access to essential resources like housing and planning support. Qualitative analysis of OPAHL Attorney Case Summaries revealed that legal services significantly sup-ported PWH in addressing concerns related to Personal Planning/Advanced Care Planning and Living Situations. Legal services included drafting powers of attorney, wills, and advanced healthcare directives, and providing tailored legal advice on estate planning and housing issues. The findings emphasize the importance of integrating legal support into comprehensive care for PWH. Future research should further explore key domains of health-harming legal needs (HHLN) and develop refined screening instruments and data collection methods to better detect HHLN and understand the

What is known on this topic?

What this study adds:

ACKNOWLEDGMENTS

This study was funded by the National Institute of Mental Health (R34MH125718). We extend our deepest gratitude to the people with HIV (PWH) who participated in this study; their willingness to share experiences and insights has been invaluable in advancing our understanding of the barriers to care and health outcomes they face. We also wish to acknowledge the Legal Clinic for the Disabled for their exceptional partnership and dedication to providing critical legal services to the participants. Their staff, including the attorney assigned to the trial, have been essential in addressing the health-harming legal needs identified herein. Our heartfelt thanks go to our health partners, The Philadelphia AIDS Consortium (TPAC) and Newlands Health, for their collaboration and support throughout this project. Their involvement has been crucial in facilitating the integration of legal services with health care and in ensuring the success of this initiative. Finally, we sincerely thank the staff, researchers, and community members whose hard work and dedication made this study possible and impactful.

REFERENCES

1. Centers for Disease Control [Internet]. What is Health Equity? [updated 2024 Jun 11; about 4 screens]. value of various legal services. See Table 2, below, for a summary of significance and contribution. Table
2. Summary of Significance and Contributions  Little is known about the specific legal questions and concerns experienced by people with HIV (PWH) that may negatively impact their access to care and health outcomes.  This study sought to document legal questions and concerns reported by PWH receiving health care in a major urban area.  This study also documented, relatively granularly, specific types of legal services that were provided to PWH who disclosed legal questions and concerns.  This study illuminates the centrality of Personal Planning/Advance Care Planning and Living Situation-aligned challenges for PWH.  This study identified a range of legal services that were provided to PWH and mitigated or fully re-solved their self-reported questions and challenges.  These findings help the field better appreciate the complex relationship between population-level social drivers of health, individual-level health-related social needs, and health-harming legal needs (a concept utilized by the medical-legal partnership community).
3. Tinetti, ME, deCardi Hlakek M, Ejem D. One size fits all—An underappreciated health inequity. JAMA Intern Med. 2024 Jan 1;184(1):7-8.
4. Stewart KE, Phillips MM, Walker JF, Har- vey SA, Porter A. Social services utilization and need among a community sample of per-sons living with HIV in the rural south. AIDS Care. 2011 Mar;23(3):340-347.
5. Kennedy MC, Kerr T, McNeil R, Parashar S, Montaner J, Wood E, Milloy MJ. Residential eviction and risk of detectable plasma HIV1 RNA viral load among HIV-positive people who use drugs. AIDS Beh. 2017 Mar;21(3):678–687.
6. Pulitzer Z, Box M, Hansen L, Tiruneh YM, Nijhawan AE. Patient, medical and legal perspectives on reentry: the need for a low-barrier, collaborative, patient-centered approach. Health Justice. 2021 Dec 2;9(1):112. Erratum in: Health Justice. 2022 Apr 30;10(1):16.
7. Alur R, Hall E, Smith MJ, Zakrison T, Loughran C, Cosey-Gay F, Kaufman EJ. What medical-legal partnerships can do for trauma patients and trauma care. J Trauma and Acute Care Surg. 2024 Feb 1;96(2):340– 345.
8. Burris S, Cameron E. The case against crim- inalization of HIV transmission. JAMA. 2008 Aug 6;300(5):578–581.
9. Lehman JS, Carr MH, Nichol AJ, Ruisanchez A, Knight DW, Langford AE, Gray SC, Mermin JH. Prevalence and public health implications of state laws that criminalize potential HIV exposure in the United States. AIDS Behav. 2014 Jun;18(6):997– 1006.
10. Aidala AA, Wilson MG, Shubert V, Gogo- lishvili D, Globerman J, Rueda S, Bozack AK, Caban M, Rourke SB. Housing status, medical care, and health outcomes among people living with HIV/AIDS: A systematic review. Am J Pub Health. 2016 Jan;106(1):e1–e23.
11. Johnson DY, Asay S, Keegan G, Wu L, Zietowski ML, Zakrison TL, Muntz N, Pillai R, Tung EL. US medical-legal partnerships to address health-harming legal needs: Closing the health injustice gap. J Gen Intern Med. 2024 May;39(7):1204-1213.
12. Office of Community Services, Administration for Children and Families, U.S. Department of Health and Human Services [Inter-net]. Medical-Legal Partnerships Plus. [accessed December 28, 2024; about 5 screens].
13. Centers for Medicare and Medicaid Services [Internet]. A Guide to Using the Accountable Health Communities Health-Related Social Needs Screening Tool: Promising Practices and Key Insights. [updated December 2023; accessed December 28, 2024].
14. Hamilton AB. (2013). Qualitative methods in rapid turn-around health services research. [PDF]. Retrieved from https://www.hsrd.re-search.va.gov/for_researchers/cyber_seminars/archives/780-notes.pdf
15. Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health. 2015 Sep;42(5):533-544.
16. Izenberg JM, Mujahid MS, Yen IH. Health in changing neighborhoods: a study of the relationship between gentrification and self-rated health in the state of California. Health Place. 2018 Jul;52:188–95.
17. Lim S, Chan PY, Walters S, Culp G, Huynh M, Gould LH. Impact of residential displacement on healthcare access and mental health among original residents of gentrifying neighborhoods in New York City. PLoS ONE. 2017 Dec 22;12(12):e0190139.
18. Whittle HJ, Palar K, Hufstedler LL, Selig- man HK, Frongillo EA, Weiser SD. Food in-security, chronic illness, and gentrification in the San Francisco Bay Area: an example of structural violence in United States public policy. Soc Sci Med. 2015 Oct;143:154–61.
19. Cluesman SR, Gwadz M, Freeman R, Col- lins LM, Cleland CM, Wilton L, Hawkins RL, Leonard NR, Silverman E, Maslow CB, Israel K, Ritchie A, Ory S. Exploring behavioral intervention components for African American/Black and Latino persons living with HIV with non-suppressed HIV viral load in the United States: a qualitative study. Int J Equity Health. 2023 Jan 31;22(1):1–29.
20. Earl TR, Saha S, Lombe M, Korthuis PT, Sharp V, Cohn J, Moore R, Beach MC. Race, relationships, and trust in providers among Black patients with HIV/AIDS. Soc Work Res. 2013 Sep 1;37(3), 219–226.
21. Feyissa GT, Lockwood C, Woldie M, Munn Z. Reducing HIV-related stigma and discrimination in healthcare settings: A systematic review of quantitative evidence. PLoS ONE. 2019 Jan 25;14(1):1–23.
22. Nyblade L, Stockton MA, Giger K, Bond V, Ekstrand ML, Lean RM, Mitchell EMH, Nelson LRE, Sapag JC, Siraprapasiri T, Turan J, Wouters, E. Stigma in health facilities: why it matters and how we can change it. BMC Med. 2019 Feb 15;17(1):25.
23. Pachankis JE, Bränström R. Hidden from happiness: Structural stigma, sexual orientation concealment, and life satisfaction across 28 countries. J Consult Clin Psychol. 2018 May;86(5):403–415.
24. Turan B, Browning W, Budhwani H, Turan J, Fazeli P, Raper J, Mugavero, M. How does stigma affect people living with HIV? The mediating roles of internalized and anticipated HIV stigma in the effects of perceived community stigma on health and psychosocial outcomes. AIDS Behav. 2017 Jan; 21(1):283–291.
25. Nouri S, Lyles CR, Rubinsky AD, Patel K, Desai R, Fields J, DeRouen MC, Volow A, Bibbins-Domingo K, Sudore RL. Evaluation of neighborhood socioeconomic characteristics and advance care planning among older adults. JAMA Netw Open. 2020 Dec 1;3(12):e2029063.
26. National Center for Access to Justice [Internet]. Attorney Access (Choose a State -Pennsylvania). [accessed December 28, 2024; about 5 screens].
27. Serchen J, Hilden DR, Beachy MW, et al. Health and Public Policy Committee of the American College of Physicians. Meeting the health and social needs of America’s un-housed and housing-unstable populations: A position paper from the American College of Physicians. Ann Intern Med. 2024;177:514517. [Epub 27 February 2024].
28. Garcia C, Doran K, Kushel M. Homelessness and health: Factors, evidence, innovations that work, and policy recommendations. Health Aff. 2024 Feb;43(2):164-171.
29. Liboro RM, Bell S, Flatt J, Pharr J, Ranu- schio B, Barnes L, Navarro A, Ribeiro A, Sheik-Yosef N, Waldron JM. Lifetime experiences of housing insecurity among gay men living with HIV at midlife: An exploratory study utilizing a social determinants of health perspective. Soc Sci. 2024; 13(8):420.
30. Vest JR, Hinrichs RJ, Hosler H. How legal problems are conceptualized and measured in healthcare settings: A systematic review. Health & Justice. 2023 Nov 18;11(1):1–9.
31. National Center for Medical-Legal Partnership [Internet]. Impact. [accessed December 28, 2024; about 4 screens]. PLANNING; LIVING SITUATION) Screening De-identified Excerpts from Topic Attorney Case Summary Themes Personal Planning, Advanced Care Planning Presenting Needs (At Time of Intake): “Power of Attorney” Issues Addressed []: “Power of Attorney” Case Summary: “Cl[ient] presented looking for a power of attorney. [Attorney] advised cl[ient] on advanced planning documents and implications of executing the power of attorney for cl[ient]'s needs.” Outcome/Resolution: “[Attorney] assisted cl[ient] w/ drafting and executing power of attorney.” Outstanding Issues: “None” Presenting Needs (At Time of Intake): “Custody, [] Wills” Issues Addressed []: “Wills” Case Summary: “Cl[ient] presented w/ questions on relinquishing . . . custody of . . . grand[child] and advanced planning.” Outcome/Resolution: “[Attorney] advised cl[ient] on custody modifications/wills and funeral planning.” Outstanding Issues: “Custody” Presenting Needs (At Time of Intake): “Wills” Issues Addressed []: “Wills” Case Summary: “Cl[ient] recently received a personal injury / accident settlement for [substantial sum]. Cl[ient] wanted advice on advanced planning / drafting a will. [Attorney] advised cl[ient] on probate and non-probate assets; and naming beneficiaries to bank accounts. [Attorney] further directed cl[ient] to speak w/ a financial advisor / the bank about managing the money. [Attorney] advised cl[ient] on [implications for current] SSA benefits. [Attorney] advised cl[ient] to wait on drafting a will until [they hold] the assets. Cl[ient] confirmed [they have] an advanced healthcare directive in place through [their] PCP.” Outcome/Resolution: “[Attorney] provided ad-vice. Cl[ient] to follow-up w/ [Attorney] for additional advice if necessary.” Outstanding Issues: “None” Presenting Needs (At Time of Intake): “[SSDI], [] Wills” Issues Addressed []: “[SSDI], [] Wills” Case Summary: “Cl[ient] presented w/ questions on SSDI and estate planning. [Attorney] advised