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.
SCOTUS Sets Dangerous Precedent for Incarcerated People Needing Care
The 8th Amendment to the United States Constitution reads as follows:
“Excessive bail shall not be required, nor excessive fines imposed, nor cruel and unusual punishments inflicted.”
Long standing precedent, Estelle v. Gamble, sets one standard of “cruel and unusual punishment” as “deliberate indifference” to the medical needs of incarcerated people. Additional precedents include an affirmative need to evaluate these medical needs on an individual basis, cannot be excused as mere neglect when an incarcerated person is at “substantial risk of harm” if that need is not met, and that providing care that is “grossly inadequate as well as by a decision to take an easier but less efficacious course of treatment” are also considered measures of “deliberate indifference”.
In August 2020, the US Court of Appeals for the 6th Circuit added an asterisk: “…if the state decides it can afford to…” provide the care required under the 8th amendment [paraphrasing].
Last month, the Supreme Court of the United States refused to hear the appeal of Atkins v. Parker, where a group of incarcerated people alleged their 8th amendment rights were violated because the state was rationing their HCV related care. In the 6th Circuit appeal, the state argued, successfully, that rationing care was “reasonable” due to budgetary constraints supposedly outside the control of the prison system.
Coverage of both appeals referred to a 2018 settlement in Michigan, wherein the state’s Medicaid program, after suit, expanded coverage to include direct acting agents. However, in a lone descent, Judge Gilman drew more direct parallels in other SCOTUS and 11th Circuit rulings regarding prison overcrowding and access to AZT (case was in 1991) for incarcerated people, ruling in part “The fast moving status of research and medical advances in AIDS treatment is continually redefining what constitutes reasonable treatment.”, respectively. Indeed, in Atkins, the state’s position boils down to “new drugs are too expensive” to be “reasonable” for incarcerated people to have access to. The majority argued because Tennessee’s Department of Corrections Medical Director, Dr. Williams, had only recently restructured the state’s rationing of DAAs and individual assessments, the state had fulfilled its obligations, within budgetary constraints. Judge Gilman correctly argued the state’s medical administrator for the prisons was obligated to request appropriate funding to meet these needs in order to fulfill the state’s 8th amendment requirements – of which, no evidence was presented to prove Dr. Williams did make such a request. Judge Gilman closes the descent with well-established citation that treating HCV early reduces overall costs of care compared to delayed or denied care.
That said, with SCOTUS refusing to hear the appeal, affected people in prisons are facing a dangerous precedent of state officials shirking their Constitutional responsibilities to provide a basic standard of care to the people in their custody. Legislatures merely need to neglect increasing a budget, as we’ve seen in other state-run health care programs, in order to avoid meeting their Constitutional duties.
Interestingly, also in April, the Department of Justice filed a statement of interest in a case in the Georgia, where an incarcerated transgender woman has been subject to violent attacks and refusal of care. The Biden administration’s position here is denying incarcerated people gender affirming medical care is a violation of the 8th amendment’s protections and is thus “deliberate indifference” to the person’s medical needs.
There’s an intersection between Diamond and Atkins that cannot be missed. While the timing of Atkins didn’t favor intervention by the current administration, this administration must also recognize the precedent set forth by Atkins, fight for appropriate funding measures to meet the medical needs of incarcerated people, and update Federal Bureau of Prisons HCV guidance to with regard to prioritization not justifying rationing of care. As with nearly every infectious disease, prisons are both a “canary in the coal mine” of the local community and the ideal environment for manifesting new diagnoses.
The most startling statistic in Atkins is even after DAAs were available, at least 109 incarcerated people had died due to HCV complications. Death by neglect, by rationing is still a death sentence.
Even as I write this, President Biden argued “health care should be a right, not a privilege.”
As it turns out, according to the 6th Circuit, it’s a right, with a large asterisk.
To ensure this injustice is answered for, advocates must remember the courts do not always find justice and our advocacy must reach every level of government. If we don’t, the asterisks will continue to add up.