Improving HIV Care After Incarceration
People incarcerated in state and federal prisons are disproportionately affected by HIV, with case rates three times higher than the general population. This disparity highlights a critical gap in our healthcare system—continuity of care post-release. The Health Resources and Services Administration (HRSA) has recognized this urgent issue through Policy Clarification Notice 18-02 (PCN 18-02). This policy, alongside insights from the Technical Expert Panel (TEP) Executive Summary, seeks to bridge the care gap by enhancing service linkage and reducing barriers for people living with HIV (PLWH) as they reintegrate into society.
Understanding PCN 18-02: Enhancements to Transitional HIV Care
HRSA’s Policy Clarification Notice 18-02 (PCN 18-02) represents a significant shift in the approach to HIV care for people transitioning from incarceration to community reintegration. Recognizing the unique challenges faced during this critical period, PCN 18-02 enables the Ryan White HIV/AIDS Program to fund a broader array of services, thereby facilitating a more seamless transition and reducing the risk of healthcare discontinuation. This policy not only expands the scope of support prior to release but also ensures that patients have the necessary healthcare connections immediately upon re-entering society.
Overview of PCN 18-02's Changes and Their Impact:
Expanded Funding: Utilization of Ryan White funds has been broadened to cover extensive care starting within correctional facilities and continuing into community reintegration.
Pre-release Services: Enhanced eligibility for support services before release, such as healthcare enrollment and medication access, ensures no interruption in care.
Broader Eligibility: Services now extend beyond state and federal prisons to include those exiting local and county jails.
Holistic Support: A comprehensive approach now integrates direct medical care with essential services that address key social determinants like housing and employment, crucial for effective reintegration.
Impact of These Changes:
Continuity of Care: These measures ensure seamless care continuity, essential for maintaining health and preventing HIV progression or transmission.
Comprehensive Support: By addressing medical needs and social determinants, the policy supports people in stabilizing their lives post-release, potentially reducing recidivism and enhancing public health outcomes.
Inclusivity and Reach: Extending care to a broader demographic within the carceral system allows a larger number of affected people to receive the necessary support for a successful transition back into society.
The approach promoted by PCN 18-02 is poised to significantly improve the outcomes for people living with HIV as they navigate the complex process of reintegration into society, aiming not just at immediate medical needs but also at long-term well-being and stability.
Challenges in Implementing Continuous HIV Care
The implementation of HRSA's Policy Clarification Notice 18-02, while a significant advancement, faces considerable hurdles that underscore the need for an integrated and responsive healthcare approach. These challenges include systemic fragmentation, unpredictable release times, and enduring stigma, each of which can severely hinder the continuity of HIV care from incarceration to community reintegration.
Systemic Fragmentation: Effective implementation requires coordinated collaboration across diverse sectors—correctional facilities, healthcare providers, and community organizations. Current systems often operate in silos, which can delay or disrupt essential healthcare services during the transition period.
Unpredictability of Release Times: The often erratic nature of release schedules complicates the delivery of continuous care. This unpredictability makes it challenging to ensure that patients receive timely medical treatment and linkage to support services immediately upon release.
Persistent Stigma: Stigma within healthcare settings and the broader community continues to be a significant barrier. It discourages people from seeking necessary care, fueled by fears of discrimination and breaches of confidentiality—issues that are particularly acute for those living with HIV and are amplified by the stigma associated with incarceration.
Strategic Responses to Address Challenges
Enhanced Coordination: Developing integrated care pathways that involve all relevant stakeholders can streamline the transition process. Patient navigation programs have proven particularly effective by guiding patients through the healthcare system, ensuring they receive necessary services promptly upon release. This aligns with findings that patient navigators improve linkage to care and adherence to treatment.
Flexible Healthcare Systems: Adapting health services to the unpredictability of release schedules involves flexible scheduling and maintaining open lines of communication between correctional facilities and healthcare providers. Furthermore, incorporating technology-supported interventions, such as telehealth services and mobile health applications, can enhance engagement and continuity of care. These tools have been underutilized but offer significant potential to reach people in remote or underserved areas.
Combating Stigma and Integrating Substance Use Treatment: In addition to education and training programs aimed at reducing stigma, integrating substance use treatment into HIV care plans is essential. Effective management of substance use disorders, including the provision of medication-assisted treatment within carceral settings, significantly improves HIV care outcomes by maintaining or achieving viral suppression.
By tackling these challenges with proactive and coordinated strategies, the healthcare community can significantly enhance support for people living with HIV as they navigate the transition from incarceration back into society, thereby improving outcomes and promoting overall public health.
TEP Insights: Why This Guidance Matters
The Technical Expert Panel (TEP) convened by HRSA's HIV/AIDS Bureau provides essential context that deepens our understanding of the systemic and societal challenges in improving HIV care for justice-involved populations. The TEP's insights reinforce the importance of HRSA's Policy Clarification Notice 18-02 (PCN 18-02) and highlight specific areas where integrated strategies can make a significant impact.
Stigma and Discrimination: TEP findings reveal that stigma, particularly within correctional settings, exacerbates challenges in HIV care, leading to confidentiality breaches and discriminatory practices such as segregation. This calls for enhanced training programs for correctional and healthcare staff that emphasize the rights and needs of PLWH, aligning with strategies to combat stigma and foster a more inclusive care environment.
Comorbidities and Holistic Care: Acknowledging the prevalence of comorbid conditions such as substance use disorders and mental health issues among the incarcerated population with HIV, the TEP emphasizes the need for integrated care that addresses these complex health needs. This supports the strategic response of forming multidisciplinary care teams and enhancing services that tackle these social determinants of health.
Peer Support and Multidisciplinary Care: The TEP advocates for the use of peer support specialists, who with their lived experiences, can bridge the gap between incarceration and community re-entry. This insight underpins the importance of strengthening peer involvement, ensuring continuous support and relatability, which are key during the transition phase.
Transitional Challenges: Highlighting the barriers during the transition from correctional facilities to the community, such as unpredictable release dates and access to healthcare, the TEP reinforces the necessity for flexible healthcare systems and enhanced coordination as previously discussed. These strategies are essential to mitigate the risks associated with interrupted care and to facilitate smoother reintegration.
Enhancing the Guidance with TEP Insights
Integrating these TEP insights into HRSA’s guidance through PCN 18-02 requires a commitment to holistic and collaborative approaches. By focusing on education, strengthening peer support, and addressing social determinants of health, the implementation of PCN 18-02 can be significantly fortified. The comprehensive review by the TEP not only underscores the critical need for these policy changes but also highlights the integrated approach needed to ensure successful reintegration and improved health outcomes for people living with HIV during and after their transition out of incarceration.
Adapting Models of Success
To ensure continuity of care for people living with HIV during their transition out of incarceration, it's beneficial to look at established, successful models. These models provide effective frameworks that can be adapted to various settings and illustrate how to overcome the systemic challenges of reintegration.
The Care Coach Model: This approach involves dedicated care coaches who provide personalized, holistic support to patients. Care coaches help with healthcare navigation, medication management, and the coordination of social services like housing and employment. This direct support helps bridge the gap between the structured environment of incarceration and the complexities of community reintegration, ensuring that people do not lose access to necessary healthcare services during this vulnerable transition period.
The Change Team Model: Developed to enhance communication and workflows within and between correctional facilities and community health services, this model involves stakeholders from various sectors coming together to identify and address systemic barriers. It utilizes a collaborative approach where correctional health staff, community healthcare providers, and social workers coordinate to prepare for a person’s release, streamlining processes such as medical record transfers, appointment scheduling, and immediate post-release support.
Strategic Implementation of Successful Models:
Adopting these models involves creating partnerships that extend beyond traditional healthcare settings to include correctional facilities and community organizations. Such collaborations are vital for addressing the fragmentation typically seen in the current systems and for adapting the flexibility needed in healthcare provision, especially given the unpredictability of release times.
By integrating elements from both the Care Coach and Change Team Models, health services can ensure more reliable and effective care transitions for people living with HIV. These models serve not only as blueprints for delivering comprehensive care tailored to the unique challenges faced by formerly incarcerated persons but also stress the importance of continuity in care, which is essential for improving health outcomes and supporting successful community reintegration.
Addressing Needs of Marginalized Populations
While adapting models of success, it's imperative to focus on interventions that specifically address the needs of marginalized populations, including cisgender and transgender women, who often face unique barriers to accessing HIV care. This involves designing interventions that tackle these barriers directly, such as gender-specific patient navigation systems, and peer support programs that address intersectional stigma and discrimination.
A Pathway to Transformation
The HRSA's Policy Clarification Notice 18-02 is a landmark step towards improving HIV care for incarcerated populations, addressing continuity of care from incarceration to community reintegration. By expanding eligibility and enhancing services, PCN 18-02 aims to ensure a smooth transition for those reintegrating into society. Despite its potential, the policy faces significant challenges like systemic fragmentation, unpredictability of release, and stigma, which require coordinated efforts across multiple sectors to overcome.
We must embrace a holistic approach that goes beyond immediate medical needs, addressing long-term well-being and stability to transform the landscape of HIV care for formerly incarcerated people. This transformation can lead to improved health outcomes, reduced recidivism, and a more equitable society.
As stakeholders from various sectors, it is imperative we collaborate to implement these changes effectively, ensuring that those affected by HIV receive the comprehensive support they need to lead healthier, more stable lives post-incarceration.
Jen’s Half Cents: Family Courts, Child Welfare Services & Missed Opportunities for Intervention and Linkage to Care
One of the things I often relate in HIV advocacy and health care advocacy is the remarkable nature of the work we do. Yeah, we can absolutely get bogged down in the nuances of payment policies and necessary regulatory functions, but that’s not what motivates us. What truly drives us is a desire to improve the lives of those around us. And, as is the nature of any community built on shared trauma, HIV advocacy is unique in how it bonds us to one another. There’s little quite like it, regardless of the stakeholder. “On the ground”, we share about everything – our relationships, our hobbies, our sex lives, our triumphs and struggles, and, yes, our families. So nearly a decade into this work, it wasn’t a surprise–when I sought some emotional support—to find I could console with my colleagues as friends upon finding myself wrapped up in a complex custody battle. It brought me a great deal of comfort to receive advice on playing a supportive role to my partner as a parent and to share things like holiday photos and craft projects.
What did surprise me was coming to understand with great intimacy how family court and child welfare systems fail to consider their roles in family health, especially with regard to multi-generational poverty and behavioral risks. On February 6th, 2020, I was sitting in a court room awaiting a hearing while another parent’s case was being heard. The parent was seeking a change to a custody arrangement because the mother of his children had experienced a mental health break, was very likely to face homelessness, and he was making a concerted effort to both keep her involved in their children’s lives and to do so in a way that set her up for success. After his hearing concluded, he respectfully asked if the hearing officer or the court social worker could recommend resources for his ex to navigate public assistance and benefit applications. The response he received was, “we don’t know, we just don’t do that,” and I was shocked—truly and remarkably shocked—the court was unprepared for this request. It can’t possibly be an uncommon one. As he got up to leave, I politely stopped him and gave him information for a local federally qualified health center, Access Health Louisiana, which happens to be Ryan White funded.
This incident incited a shift in my perspective and self-education regarding issues of health, HIV-status, and family court and child welfare issues. A 2003 report from the ACLU’s AIDS Project found providers reporting clients having lost custody, denied visitation with their children, or having been barred from being foster or adoptive parents due to their sero-status. Indeed, parents have had their custody arrangements negatively impacted by merely associating with PLWH. In 2015, POZ Magazine covered the story of Donna Branum, a mother in Kansas who temporarily lost custody of her children because her fiancé’s HIV-status. While Branum was ultimately granted the right to return to a joint custody arrangement, the issue came to the attention of the court because Branum’s ex-husband petitioned the court, claiming Ms. Branum’s fiancé posed a “health risk” to the children. The ACLU’s 2003 report appropriately describes this type of stigma and lack of foundational, basic HIV-related education as discriminatory.
Thanks to a Supreme Court decision in 1998, HIV status, including “asymptomatic” cases, is covered under the protections offered by the Americans with Disability Act (ADA). While Bragdon v. Abbott centered on a dentist refusing to provide care for Sydney Abbott based upon her HIV status, the ruling contributed to the Department of Justice specifically mentioning HIV (twice) as a covered disability in its August 2015 guidance on the rights of parents and potential parents and technical assistance document regarding family courts and child welfare agencies:
Excerpt:
3. Who do Title II of the ADA and Section 504 protect in child welfare programs?
Answer: Title II of the ADA and Section 504 protect qualified individuals with disabilities, which can include children, parents, legal guardians, relatives, other caretakers, foster and adoptive parents, and individuals seeking to become foster or adoptive parents, from discrimination by child welfare agencies and courts. Title II also protects individuals or entities from being denied or excluded from child welfare services, programs or activities because of association with an individual with a disability. For example, Title II prohibits a child welfare agency from refusing to place a child with a prospective foster or adoptive parent because the parent has a friend or relative with HIV.
A 2013 UNAIDS report, entitled Judging the Epidemic, describes denying parents with HIV custody and visitation rights as “arbitrary, disproportionate and ineffective” with regard to any public health interest and urges courts to consider “actual” risk to a child’s welfare rather than “theoretical” risk. UNAIDS recognizes both children’s best interests and the rights of parents living with HIV as human rights issues needing careful address. However, even back in 1992, the book, AIDS Agenda: Emerging Civil Rights Issues, recognized family court matters provided an opportunity for “…the worst characteristics of litigants [to] emerge, with divorcing parents raising issues based on prejudice rather than on concerns of parenting ability – out of their own bias, anger, or an attempt to appeal to the anticipated biases of judges.” Both sources cite the American Bar Association’s position defending the rights of parents living with HIV and legal precedents in which parents living with HIV needed to employ medical experts to explain what’s commonly understood in medical circles: it is impossible to transmit HIV via casual, household contacts.
I’d be remiss not to mention a growing area of study currently gaining more attention: how—both psychological/emotional and physical—abusers use family court processes to exert control over their intended victims. At the intersection of family court processes being abused and parents living with HIV is the decade-old Centers for Disease Control report on domestic/intimate partner violence as “…both a risk factor for HIV, and a consequence of HIV.” This area deserves more attention than it gets; the least of which being a follow-up and more recently updated data than is provided in the CDC report.
In fact, despite attention to educating children and families and providing a holistic approach to outreach and linkage to care, the National HIV Strategy doesn’t mention family courts or child welfare agencies even once. With the HIV epidemic disproportionately impacting Black Women, family courts and child welfare agencies have a very unique opportunity as non-traditional partners to impact the public health of their communities. However, to even begin doing this, family court judges and child welfare agencies would need to begin addressing policies and procedures that essentially penalize poverty (often confusing poverty with negligence), rather than assisting families in need.
“We recognize the lives of PLWH are often impacted by people not working in HIV,” Louisiana’s implementation of their Ending the HIV Epidemic plan, Get Loud Louisiana, states. The plan is the first (to my knowledge) to include activities to engage family courts, social workers, and child welfare agencies to educate and change policies to better serve this public health interest.
Like all issues surrounding HIV, this is an intersectional one. Well-established is the role and social support of family for people living with HIV, and family court’s primary mission is the health and well-being of families; policies and procedures for resource-sharing are of paramount importance in meeting both of these sets of needs. To end the epidemic, to set families up for success, to address stigma, to help keep PLWH engaged in care, and so much more, we must begin to engage these critical stakeholders. We cannot afford to continue to miss this opportunity.