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.
Special Interests Favor S.4395, but Patients Oppose It...Here's Why
This blog post is a collaborative piece, co-written by Brandon M. Macsata, CEO of ADAP Advocacy Association, and Jen Laws, CEO of Community Access National Network.
The very first words of the Ryan White HIV/AIDS Treatment Extension Act of 2009 read, “An Act to amend title XXVI of the Public Health Service Act to revise and extend the program for providing life-saving care for those with HIV/AIDS.” These words reflect the true legislative intent of the Act, which is to provide life-saving care and treatment for people with HIV/AIDS (PLWHA). For over thirty years, these words have represented a contract between our government and PLWHA, reflecting a commitment to patients. The Ryan White HIV/AIDS Program (RWHAP), as the payor of last resort, has literally served as the only lifeline for hundreds of thousands of patients in some of the most marginalized communities. That is why the ADAP Advocacy Association and the Community Access National Network (CANN) have led a national advocacy campaign to thwart any effort to undermine the legislative intent.
A proposed bill, S.4395 (otherwise known as the "Ryan White PrEP Availability Act"), would, for the first time in the 32-year history of this life-saving contract, open the Act to divert programmatic funding from PLWHA to people who are not living with HIV. The legislation is not only ill-conceived, it is potentially very dangerous. The special interests behind this legislation, as well as their inside-the-beltway lobbying tactics, do not reflect the general sense of the much broader HIV patient advocacy community.
In fact, nearly 100 national, state, and local organizations joined the ADAP Advocacy Association and Community Access National Network in submitting a sign-on letter to Congress expressing the HIV patient advocacy community's collective concerns over the legislation. The sign-on letter was sent to Chair and Ranking Member of the Senate Committee on Health, Education, Labor & Pensions (HELP), Chair and Ranking Member of the House Committee on Energy & Commerce (E&C), and the Co-Chairs of the Congressional HIV/AIDS Caucus. Several of these offices applauded our efforts upon acknowledging receipt of the letter.
David Pable, who has been deeply embedded in South Carolina's patient advocacy community, expressed strong sentiments against the legislation. Pable said, "For almost 20 years, Ryan White has been a lifeline for me, and it was truly the safety net that saved my life. Ryan White-funded medical care, case management, and mental healthcare services have transform my life and the lives of countless others to survive and thrive." Pable's views are shared by nearly all PLWHA who learn about the potential danger lurking behind S.4395.
Over the years, Pable had the opportunity to be involved in many planning meetings for prevention services, including the need for an adequate PrEP program with dedicated funding. According to Pable, never in any of those meetings was it discussed as a good idea to funnel funding from the Ryan White Program to pay for PrEP. "Treatment, care and prevention make up three sides of the triangle," he said. "Together they each hold up the other, but take one piece away to support the other and eventually it will all fall apart."
S.4395 would authorize the Health Resources & Services Administration (HRSA) to divert already limited resources away from providing care and treatment for PLWHA. The legislation reads, in part, "Any eligible area, State, or public or private nonprofit entity that receives a grant under part A, B, C, or D may use program income received from such a grant to provide to individuals who are at risk of acquiring HIV... drugs and biological products for pre-exposure prophylaxis (PrEP)... medical, laboratory, and counseling services related to such drugs and biological products...and referrals and linkages to appropriate services for the prevention of HIV."
The legislation is extremely ill-advised for numerous reasons. Amending the Ryan White Program (Pub.L. 101-381) would:
Open-up the law, (which is currently unauthorized) and thus subject it to potentially harmful changes in a hyper-partisan political environment.
Change the purpose of the law, in that the purpose of the Ryan White Program is serving people living with HIV/AIDS.
Create yet another access barrier for the approximately 400,000 PLWHA who are not in care.
Further isolate PLWHA who are already disproportionally impacted by homelessness, hunger, substance use disorder, and undiagnosed and/or untreated mental health conditions.
Impede Ending the HIV Epidemic's efforts to both increase enrollment and expand services for low-income PLWHA, especially since discretionary funding is already limited.
Unfortunately, special interests continue to push false narratives in their efforts to shove the harmful legislation through the Congress. Probably one of the most egregious claims, “The bill’s intent and text doesn’t take money from people living with HIV.” This is false!
Indeed, legislative language reads, “To allow grantees under the HIV Health Care Services Program to allocate a portion of such funding for services to individuals at risk of acquiring HIV.” While subsection “B” of the legislation entitles the program as “voluntary” and to not allow federal grant dollars for the use of funding PrEP or PrEP services, it would allow federal grant dollars to be used for referrals – explicitly providing funding for people not living with HIV.
Photo Source: oncnursingnews.com
More concerning, special interests supporting the legislation conflate programmatic revenue as not grant dollars, as a somehow meaningful distinction. There is no difference in this distinction because each funded RWHAP recipient and subrecipient is required under current law to use their programmatic revenue to support providing services included in the grant – for people living with HIV. The design of these programs are significantly dependent on revenues generated from the 340B Drug Discount Program (340B) in order to meet the goals outlined in each of the grants.
And that gets to the heart of the issue here. 340B's intent was “to stretch scarce federal resources as far as possible, reaching more eligible patients and providing more comprehensive services.” The program, amid much criticism, allows federal grants funding public health programs count on 340B revenues in order to show they can operate a sustainable program.
Let's be clear: S.4395 would divert RWHAP programmatic revenues – including 340B dollars – away from providing services and supports to PLWHA who are living at or below 400% of the federal poverty level (the income threshold for qualifying as eligible for receiving RWHAP funded services). It is important to remember that more than 50% of the patients receiving care from the State AIDS Drug Assistance Program are living at or below 100% of the federal poverty level. More than 250,000 patients, or approximately one quarter of all the estimated people living with HIV in the United States are earning less than $13,000 per year.
Kathie Hiers, President & CEO of AIDS Alabama argued, "The HIV community needs to get its act together around funding for PrEP. We have been told by the Director of the Office of National AIDS Policy that our messaging is not cohesive. At AIDS Alabama, we understand that stable PrEP programs are absolutely necessary if we ever hope to end HIV as an epidemic. However, raiding the Ryan White Program to fund prevention is not the answer, particularly as the needs of an aging HIV-positive population continue to grow."
As it stands, gaps in care still remain for too many marginalized communities. It isn't uncommon for patients to fall out of care because they have to prioritize work, or child care, or buying food, or finding affordable housing, or finding transportation. Funding to meet the needs for these patients is already stretched way too thin and the current inflationary pressures have only made things harder for far too many PLWHA. There are tens of thousands of people living with HIV who have no roof over their heads when they try to find a safe spot to sleep tonight.
Photo Source: debralmorrison.com
Robbing Peter to pay Paul is not the solution to funding HIV prevention efforts in the United States. A better option to meet the needs of people who would benefit from PrEP, and that is additional HIV prevention funding. This approach would allow patient choice in medicines and support for ancillary services, provider education and outreach. Additionally, HIV prevention funding could be directed to communities that are most in need of prevention medicines and services, thereby providing more equitable access. This approach would also use and could strengthen the existing HIV prevention infrastructure.
One local health department official (who asked to remain anonymous) in Florida said the people behind the legislation did not understand the nuances between funding for HIV prevention and HIV treatment. We couldn't agree more!
The HIV+Hepatitis Policy Institute's Carl Schmid summarized, "It's not an issue of not wanting clinics that receive Ryan White Program funding to be engaged in PrEP, we think they are the perfect places for PrEP to be delivered. It is an issue of taking funding generated from caring and treating for people living with HIV away from the intended purpose of the Ryan White Program – to provide for people living with HIV. With so many people with HIV living longer, who are not in care or have fallen out of care, you would think that these Ryan White grantees would devote that money to people who are living with HIV, as it was intended."
With more than a decade of science to back the position that effectively treating PLWHA, ensuring viral suppression both empowers positive health outcomes for PLWHA and prevents new transmissions. One of the most startling and, frankly, concerning shifts in the public policy conversation regarding Ending the [domestic] HIV Epidemic is a move away from focusing on the needs of PLWHA in favor of PrEP. The policy issues at hand, including the necessary funding, should not be proposed as an “either/or” situation, but an “and” situation. The same things that make a person vulnerable to contracting HIV are the same things that are killing people already living with HIV.
While the U.S. Centers for Disease Control and Prevention (CDC) 2020 Surveillance data found 70% of white PLWHA were virally suppressed, only 60% of their Black/African American peers were virally suppressed. Additionally, while the U.S. Department of Housing and Urban Development (HUD) reported a general homelessness rate across the country as about 0.2% of the population, the CDC’s 2019 data found that PLWHA among communities of color were experiencing homelessness at a rate of 11%. It cannot be understated how the power RWHAP dollars hold to address these disparities specifically affecting patients. Failing to do so not only betrays the contract at the center of the legislative intent, it perpetuates injustices levied against our peers, our family, and our community. Raiding precious dollars from this program is nothing short of consenting to the unjust neglect of our communities.
Said Murray Penner, U.S. Executive Director for Prevention Access Campaign: "The Ryan White Program is crucial for people living with HIV, providing treatment and supportive services to keep people healthy and undetectable so they will not sexually transmit HIV. With over 400,000 people living with HIV in the U.S. who are not virally suppressed, there is significant unmet need for additional services. S.4395 would move money out of the Ryan White Program, potentially leaving people without the crucial treatment and services that keep them healthy and prevent new transmissions. Ensuring that the Ryan White Program is fully funded is critical for us to improve the quality of life for people living with HIV and thus improve our country's viral suppression rate and help us end the HIV epidemic."
A cornerstone of the HIV patient advocacy community's success over the last 40 years has been its desire to come together for a common purpose, which has centered around the notion of do no harm! S.4395 and the special interests and inside-the-beltway lobbyists pushing it have failed to meet that test. Raiding Ryan White programmatic funding for PrEP would negatively impact patients. Trying to authorize or amend an already underfunded program, when there is still so much unmet need in its originally intended population, undermines the goals of the program. If we try to be everything to everyone, we will end up failing on all fronts. The powers that be in Congress have assured us that this legislation "ain't going anywhere" this year!