Health-Harming Legal Needs Identified by People with HIV

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 for-midable. Meanwhile, the specific barriers confronting 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 designing 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 elimi-nated 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. Meanwhile, 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-spon-sored 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, covering “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 pro-ceeding), 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”).

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) 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 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).

We selected for analysis only Personal Planning/Advanced Care Planning and the consolidated, CMS-aligned category of Living Situation (reflecting 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

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 compared with those in neighborhoods with high socio-economic status [24]. Our study participants were recruited and engaged from an urban neighborhood in a state (Pennsylvania) that ranks 34 th 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 opposed 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-highest 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 screening tool, specifically Personal Planning/Advanced Care Planning, as well as Eviction or Threat of Losing Home and Unsafe Housing or Repairs. We hypothesize that this is a byproduct of several possible factors:  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 desig-nations, 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 context.  The time and effort involved in legal intervention, overall and broken down by function;

 Whether the legal intake interview was primarily 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 interview enables discernment of the specific legal 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 territory 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 attempt to access care and improve their health outcomes. 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 supported 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 value of various legal services. See Table 2, below, for a summary of significance and contribution. PLANNING; LIVING SITUATION) Screening

De-identified Excerpts from Topic

Attorney Case Summary

Themes Personal Planning, Advanced Care Planning

Appendix 1.

Analysis: Key Words, Observations, and

 “Power of attorney”  “Advised client”  “Advanced planning documents”  “Implications of executing the power of attorney for cl[ient]’s needs”  “Drafting and executing power of attorney”  When case was closed, Client was equipped with new, tailored legal resource (power of attorney).  Custody and related modifications  Wills  “Relinquishing... custody of... grand[child]” and phenomenon of grandparents raising minor grandchildren  Funeral planning  When case was closed, Client was equipped with specific legal advice.  Wills  “Personal injury”, related monetary settlement  “Advanced planning”  “Drafting a will”  “Probate and non-probate assets”  “Naming beneficiaries to bank accounts”  Consulting a financial advisor  “[Implications for current] SSA benefits”  Holding assets  “Advanced healthcare directive”  “Provided advice”  When case was closed, Client was equipped with specific legal advice and invited to re-engage with Attorney if desired. Unsafe Housing or Repairs (falls under umbrella of CMS’s Living Situation domain)  “Disability determination” and relationship to pending SSDI application or appeal  “Redetermination / appeal process”  “Draft and execute documents”  When case was closed, Client was equipped with legal advice and invited to re-engage with Attorney if desired; Case closed because Client did not “follow up” with Attorney.  “Living will”  “Advanced directive”  “Healthcare power of attorney”  “Advised cl[ient] on advanced planning documents and benefits of executing the advanced healthcare directive”  “Drafting and executing cl[ient’s] advanced healthcare directive”  When case was closed, Client had new, tailored legal resource (advanced healthcare directive).  “Non-renewal of lease”  Termination of lease  “Habitability issues”  “[Attorney] advised cl[ient] on notice requirements to not renew lease.”  “[Attorney] ghost wrote non-renewal letter for cl[ient] to send to [Landlord]”  Ghost-writing phenomenon as part of legal advocacy  Intersections among immigration status, benefits eligibility, employment status, and housing expenses  "Late on paying rent”, “a few times the rent has been late”  “L[andlord] has threatened... eviction b/c of late payments and requests for repairs.”  Phenomenon of non-payment of rent as a basis for landlord-threatened or -initiated eviction actions  “Leaks, crumbling façade and foundation”  “Issues with patio and gas system”  Attorney encouraged Client to activate a rental unit inspection process.  Question of whether Landlord has “rental license”  “Demand letter”  Attorney recommended Client connect with an additional community resource; Client already had communicated with them and did not receive the support they sought.  “[Attorney] advised cl[ient] on implications re an eviction”  At time case was closed, “Cl[ient] withdrew / did not return.” What exactly does this mean?  Labeled “Other Miscellaneous” but patient’s reported concerns are related to Immigration, Benefits, and Housing (Living Situation) domains, minimally.  “Private” and the phenomenon of some living situations involving private-market landlords as opposed to other types of housing/shelter providers  “Habitability issues”  “Subsidy”  “Mold issue” in kitchen and bathroom  “Ants” in bathroom  Costs of extermination services; who should bear them  “[Attorney] advised on tenants' rights, [specific resource], withholding rent, and writing a demand letter.”  Attorney apparently had asked Client to supply a copy of the lease to inform the next stage of potential legal services.  At time case was closed, evidently “Cl[ient] did not follow up to provide lease” and therefore additional legal services could not be offered.  Intersections among immigration status, benefits eligibility, employment status, and housing expenses  "Late on paying rent”, “a few times the rent has been late”  “L[andlord] has threatened... eviction b/c of late payments and requests for repairs.”  Phenomenon of non-payment of rent as a basis for landlord-threatened or -initiated eviction actions  “Leaks, crumbling façade and foundation”  “Issues with patio and gas system”  Attorney encouraged Client to activate a rental unit inspection process.  Question of whether Landlord has “rental license”  “Demand letter”  Attorney recommended Client connect with an additional community resource; Client already had communicated with them and did not receive the support they sought.  “[Attorney] advised cl[ient] on implications re an eviction”  At time case was closed, “Cl[ient] withdrew / did not return.” What exactly does this mean?  Labeled “Other Miscellaneous” but patient’s reported concerns relate to Immigration, Benefits, and Housing (Living Situation) domains, minimally.