Gaming as a New HIV Prevention Tool

The latest data from the Centers for Disease Control and Prevention (CDC) indicate that people aged 13 to 34 accounted for more than half (56%) of all new HIV diagnoses in the United States in 2022. This concerning trend underscores a critical need for HIV prevention methods that resonate with younger demographics and at-risk communities. Gamification—the strategic integration of game elements into non-game contexts—may offer a promising solution. By leveraging the inherent appeal of games to engage, motivate, and provide personalized feedback, gamification has the potential to transform HIV prevention efforts. It can bridge knowledge gaps, promote behavior change, and empower people, thereby contributing significantly to public health goals aimed at ending the HIV epidemic.

Gamification: A Powerful Tool for Public Health

Gamification involves incorporating game mechanics such as points, challenges, and rewards into websites, apps, or learning systems to enhance user engagement and motivation. The goal is to inspire collaboration and interaction, fostering higher engagement and loyalty among consumers, employees, and partners. According to a report by Deloitte, "Gamification has proliferated to the point that elements have entered consumers' daily lives, transforming inconvenient tasks into fun activities."

The effectiveness of gamification stems from its ability to tap into fundamental psychological and behavioral principles. One framework that helps in understanding these principles is the Octalysis Framework, developed by gamification expert Yu-kai Chou. The Octalysis Framework identifies eight core drives that motivate human behavior:

1. Epic Meaning & Calling: The belief that one is doing something greater than oneself.

2. Development & Accomplishment: The internal drive for making progress, developing skills, and eventually overcoming challenges.

3. Empowerment of Creativity & Feedback: Engaging users in a creative process where they have to repeatedly figure things out and try different combinations.

4. Ownership & Possession: Users are motivated because they feel ownership over something.

5. Social Influence & Relatedness: Activities driven by social elements, including mentorship, social acceptance, and competition.

6. Scarcity & Impatience: The desire to have something because it is rare or immediately unattainable.

7. Unpredictability & Curiosity: The drive stemming from not knowing what will happen next.

8. Loss & Avoidance: The motivation to avoid negative consequences.

By incorporating these core drives, gamification strategies can effectively engage and motivate users.

For instance, rewards and recognition act as powerful motivators, encouraging users to actively participate and achieve desired outcomes. This aligns with the Octalysis Framework's core drive of Development & Accomplishment, where users are motivated by a sense of progress and achievement.

Game mechanics such as challenges, levels, and progress bars transform potentially mundane tasks into interactive and enjoyable experiences. Continuous feedback and a clear sense of progress reinforce positive behaviors and encourage sustained engagement. This relates to the core drive of Empowerment of Creativity & Feedback, where users feel empowered by their ability to influence outcomes and track their progress.

Moreover, gamification can foster a sense of community and healthy competition among users, providing social support and enhancing motivation. This leverages the power of Social Influence & Relatedness, where users are motivated by connection, comparison, and collaboration.

By understanding and applying these core drives, gamification can create engaging experiences that motivate users to adopt and maintain healthy behaviors—crucial in the context of HIV prevention.

Real-World Applications in Healthcare

The application of gamification in healthcare is not merely theoretical. Real-world examples demonstrate its impact:

• Medisafe, a medication reminder app with over 5 million users, reports that two-thirds of patients with hypertension, diabetes, and depression using their app have improved their medication adherence. The app uses personalized reminders, progress tracking, and rewards for adherence, effectively applying gamification principles to improve health outcomes.

• Re-Mission, a set of online games designed for young people with cancer, allows players to control a nanobot that fights cancer cells and manages side effects. This makes the challenging experience of cancer treatment more engaging and empowering.

These examples illustrate how gamification can activate patients, encouraging them to take ownership of their health and become active participants in their care. By making health education more engaging and effective, gamification can lead to better understanding and retention of information—important factors in HIV prevention.

A l'Assaut du Sida (AADS): A Case Study in Gamified HIV Prevention

"A l'Assaut du Sida" (AADS), meaning "Tackling AIDS," is a compelling example of gamification's potential to drive meaningful change in HIV prevention. This interactive mobile game app, developed by SYL, a Côte d’Ivoire-based technology company, has reached over 300,000 young people in the country.

The app's development and distribution were a collaborative effort between SYL, UNAIDS, UNICEF, the Global Fund, and the Côte d’Ivoire Ministry of Health. This partnership ensured the app's alignment with national HIV prevention goals, access to funding and resources, and widespread promotion. A key factor in AADS's success was its strategic promotion during the African Cup of Nations football tournament. By leveraging the popularity of this major sporting event, the app effectively engaged young people, particularly boys and men who are often harder to reach with traditional HIV prevention campaigns.

AADS addresses significant knowledge gaps about HIV among youth in Côte d’Ivoire. A survey revealed that only 40% of respondents knew that antiretroviral treatment for HIV exists. The app provides comprehensive content covering topics such as stigma, human rights, gender equality, and gender-based violence, educating users on crucial aspects of HIV prevention and care.

The positive impact of AADS is evident in both its reach and user feedback. Young players reported learning a great deal about HIV and related topics through the app's engaging quiz format. Côte d’Ivoire’s Minister of Health, Pierre Dimba, acknowledged the app’s success, stating, "This fun and educational online game is a response to young people's need for true and accurate information via social media."

Looking ahead, national partners are working to distribute a scholastic version of the game to schools nationwide, demonstrating their commitment to scaling up this innovative approach to HIV prevention. The app's low cost and adaptability make it a sustainable model for HIV prevention efforts, particularly in the context of potentially decreasing international funding.

Reaching the LGBTQ+ Gaming Community: A Critical Audience

The gaming community has witnessed a significant increase in the representation of LGBTQ+ players, creating a unique opportunity for targeted HIV prevention efforts. Within this diverse community, a significant subculture known as "gaymers" has emerged. The term "gaymers" is a blend of "gay" and "gamers" and is commonly used within the LGBTQ+ gaming community. It refers to LGBTQ+ gamers who share a passion for video games and often form their own networks and communities both online and offline.

According to a 2024 GLAAD study, 17% of active gamers identify as LGBTQ+, representing a 70% increase from 2020. This growth is even more pronounced among younger gamers, with 23–28% of gamers under 35 identifying as LGBTQ+. The rise of the gaymer subculture underscores the increasing visibility and representation of LGBTQ+ people in gaming.

The Growing Presence of Transgender and Nonbinary Gamers

The prevalence of transgender and nonbinary gamers has also risen notably. Between 2015 and 2018, they comprised approximately 1–2% of the gaming population. By 2021, this number increased to around 5%. Additionally, research from the International Journal of Environmental Research and Public Health estimates that 1.2–2.7% of the adolescent population are gender-diverse. This growing representation underscores a significant and expanding audience within the gaming community that can be reached through tailored interventions.

The Appeal of Gaming for LGBTQ+ People

Video games offer a sense of escapism and a platform for self-expression, allowing players to immerse themselves in alternative realities and explore different identities free from real-world constraints. This can be especially appealing for LGBTQ+ people who may face challenges or discrimination based on their sexual orientation or gender identity. Games that allow for character customization, narrative exploration, and community interaction can be profoundly liberating and affirming.

Multiplayer games provide opportunities for social connection and community building. These online spaces can foster a sense of belonging, particularly for those who may feel isolated or lack access to supportive LGBTQ+ communities in their offline lives. The ability to interact anonymously can also allow people to explore and express their identities more freely.

Challenges and Opportunities

Despite the potential of reaching LGBTQ+ people through gaming, significant challenges exist. Homophobia, transphobia, and bigotry persist within the gaming community, creating hostile environments for many LGBTQ+ players. This underscores the need for interventions that not only provide information about HIV prevention but also address issues of stigma, discrimination, and online harassment.

However, the increasing representation of LGBTQ+ gamers presents substantial opportunities:

• Growing Audience: The rising number of LGBTQ+ gamers, particularly among younger demographics, means that gaming platforms can be effective channels for HIV prevention messaging.

• Tailored Content: Understanding the specific preferences and motivations of transgender and nonbinary gamers allows for the development of interventions that are culturally relevant and engaging.

• Community Engagement: Multiplayer and community-based games offer opportunities for social connection, peer support, and the dissemination of health information within a supportive environment.

Tailored Strategies for Engagement

Developing gamified HIV prevention strategies that resonate with LGBTQ+, transgender, and nonbinary gamers is a massive opportunity. Public health data underscores the importance of this approach, as these groups are at a disproportionately high risk for acquiring HIV. For instance, the CDC reports that men who have sex with men (MSM) accounted for 67% of new HIV infections in 2022, and an estimated 14% of transgender women in the United States are living with HIV.

Interventions focusing on themes of self-discovery, community building, and personal empowerment may be particularly effective. Research from Quantic Foundry indicates that transgender and nonbinary gamers often prioritize games that allow for:

• Self-Expression and Creativity: Games that offer customizable avatars, inclusive narratives, and opportunities for creative input engage transgender and nonbinary gamers effectively.

• Exploration of Identity: Interactive experiences that allow players to explore different aspects of their identity in a safe and affirming environment can be particularly impactful.

• Community Building: Features that foster social connections and peer support can enhance engagement and provide valuable platforms for disseminating HIV prevention information.

Addressing Unique Challenges

Incorporating elements that address the specific challenges faced by LGBTQ+ people—such as stigma, discrimination, and barriers to healthcare access—can enhance the relevance and impact of these interventions. By fostering a sense of community and belonging within the gaming environment, gamified strategies can promote peer support and encourage positive health behaviors.

For example, gamified interventions could include:

• Narratives that Reflect Diverse Experiences: Storylines that incorporate LGBTQ+ characters and experiences promote inclusivity and resonance.

• Resources and Support: In-game links to resources on HIV prevention, testing, and support services tailored for these communities.

• Safe Online Spaces: Moderated environments that protect players from harassment and discrimination, ensuring a positive and affirming gaming experience.

The Potential for Impact

The increasing representation of LGBTQ+ people in gaming underscores the potential of this medium as a channel for targeted HIV prevention efforts. By aligning game design with the preferences and motivations of these gamers, public health initiatives can more effectively reach these at-risk populations and contribute to reducing HIV transmission rates.

Moving Forward

Gamification holds immense potential to transform HIV prevention efforts among young people and at-risk communities, including the LGBTQ gaming community. To fully realize this potential, we should consider:

• Increased Investment: Funding agencies should prioritize gamification in HIV prevention research grants, providing resources for the development and evaluation of innovative interventions.

• Collaborative Partnerships: Building partnerships between game developers, public health organizations, LGBTQ advocacy groups, and researchers is essential. Such collaboration ensures that games are culturally relevant and resonate with diverse audiences.

• Rigorous Evaluation: Implementing evidence-based design and conducting rigorous evaluations are key for assessing the effectiveness of gamified interventions and making necessary adjustments.

• Ethical Design: Ethical considerations, particularly related to data privacy, informed consent, and cultural sensitivity, must be at the forefront of game development.

Advancing Policy

Policymakers, healthcare providers, educators, and community organizations all have a role to play in advancing gamified HIV prevention:

• Policymakers can support legislation that promotes digital health innovation and ensures equitable access to technology.

• Healthcare Providers can incorporate gamified tools into their practice to enhance patient education and engagement.

• Educators can utilize gamified interventions like AADS in school curricula to provide comprehensive sexual education.

• Community Organizations can collaborate with developers to create interventions that address the specific needs of their communities.

As we move forward, embracing innovation and collaboration is essential. By leveraging the power of gamification, we can create engaging, effective, and inclusive HIV prevention strategies that resonate with at-risk communities. Gamification has the potential not only to educate and inform but also to empower and inspire, creating a generation equipped with the knowledge, skills, and motivation to protect themselves and their communities from HIV.

Together, we can level up our efforts and make significant strides toward ending the HIV epidemic.

Why Mental Health is Central to Ending the HIV Epidemic

Have you ever felt like you were living two lives—one presented to the world, while the other is buried under secrecy and shame? For many people living with or at risk of HIV, this dual reality is painfully familiar. World Suicide Prevention Day might trend on social media, but hashtags rarely touch on the quiet, insidious epidemic where HIV meets a mental health crisis that too often remains in the shadows.

We’ve made significant strides in treating HIV, but the virus isn’t the only battle. There’s another battle just as critical: the mental toll—the invisible wounds and lingering trauma often overlooked despite medical advances. And all the progress in the world won’t matter if we ignore the mental and emotional realities of those living with HIV. We need more than medicine—we need a mindset shift that sees mental health as equally important and valid as physical health.

It’s time to confront the deeper issues directly: the stigma, the trauma, the daily fears. We need a mental healthcare system that understands, listens, and treats the whole person—not just the virus. Until we address these challenges head-on, we aren’t truly ending the HIV epidemic.

Navigating Mental Health Challenges with HIV

Living with HIV is not solely a medical challenge; it is a continuous mental marathon. The numbers show that we’re dealing with more than just a virus. People living with HIV are 100 times more likely to die by suicide than other populations. Anxiety disorders affect 15.5% of people living with HIV, compared to 3.6% in the general population, and depression is 2 to 5 times more common. Even more concerning, up to 70% have experienced trauma—20 times the rate of the general population.

These numbers represent real people navigating complex challenges. While not every person living with HIV faces mental health issues, for many, these struggles are a significant part of their experience. As one researcher notes, "The significantly higher prevalence compared to the general population suggests that anxiety disorders are a critical global public health concern among people living with HIV, requiring urgent prevention and treatment efforts."

To fully understand the scope of these challenges, we must consider "weathering"—the cumulative wear and tear on the body and mind from chronic stress and adversity. Dr. Sannisha K. Dale explains that for people living with HIV, this process is worsened by relentless stigma, discrimination, limited access to resources, systemic inequities, and other enduring social barriers. Weathering isn’t just about feeling worn down; it accelerates aging in a very real, biological way, leading to more chronic illnesses, cognitive decline, and other issues that hit harder and sooner for people with HIV. Research in iScience shows this accelerated aging can start almost immediately—within three years of acquiring HIV—due to cellular changes that affect overall health.

And it’s not just biology. Behavior plays a significant role too. A study in Translational Psychiatry reveals that maladaptive coping mechanisms like smoking or substance use, often developed in response to constant adversity, can accelerate aging and complicate HIV management. This highlights the importance of addressing both psychological and behavioral factors in HIV care, not just the virus itself.

Take Malcolm, a 66-year-old who’s been living with HIV for 28 years. Despite his resilience, he faces daily struggles: managing not only his HIV but also high blood pressure, Type 2 diabetes, and the mental toll of juggling multiple health conditions. As he puts it, "I'm just happy to be here," but that statement carries the weight of a lifetime of survival amid a complex landscape of healthcare challenges, stigma, and aging with HIV. Malcolm’s experience highlights the compounded difficulties faced by many older adults with HIV, where trauma is often a chronic companion rather than a singular event.

His story reflects a broader pattern: trauma, whether from the loss of friends to the epidemic, ongoing health challenges, or societal discrimination, often persists and manifests as PTSD, depression, substance use, and other mental health struggles. As such, the need for comprehensive care that addresses both the psychological scars and the physical realities of living with HIV has never been more urgent.

As Dr. Dale puts it, "Systemic oppression and mental health struggles faced by people living with HIV throughout their lives may accelerate the aging process and continue to negatively impact their physical health and wellbeing as they age." This isn’t just a health crisis—it’s a call to fundamentally rethink how we approach care and compassion for those most affected, demanding action that is both immediate and transformative.

Understanding weathering in the context of HIV is critical to developing effective care strategies. Research from the HIV Vaccine Trials Network makes it clear: it’s not just about treating the virus; it’s about recognizing the full scope of what people are up against—mental health challenges, trauma, and social determinants of health. Only by addressing all these factors can we create interventions that truly support healthier aging and improve the quality of life for people living with HIV.

Why Mental Health is Key to Effective HIV Care

Mental health and HIV care are inextricably linked, with research showing that untreated mental health conditions can significantly undermine adherence to antiretroviral therapy (ART), complicating efforts to achieve viral suppression and maintain overall health. The Substance Abuse and Mental Health Services Administration (SAMHSA) highlights this connection, stating, "Untreated behavioral health conditions can significantly hinder HIV care engagement, medication adherence, and overall health outcomes."

Yet, accessing mental healthcare while living with HIV is often a challenge. Limited services, cultural gaps among providers, and pervasive stigma are just some of the hurdles. This is compounded by a fragmented healthcare system that treats HIV care and mental health services separately. To address these gaps, we need to urgently improve provider education and competency in addressing both HIV and mental health needs. The World Health Organization and UNAIDS advocate for integrating mental health and HIV care. Their call for a holistic approach goes beyond just medical checklists—it’s about addressing psychological and social factors too. Integrated care models have shown promise, improving both mental health outcomes and adherence to HIV treatment.

Studies have shown that integrating mental health services into HIV care can significantly improve outcomes. This approach has been shown to reduce depressive symptoms by 25-50%, enhance adherence to antiretroviral therapy (ART), and increase the rates of viral suppression up to 95%. Collaborative care models, where mental health professionals and HIV providers work together, have proven effective in reducing hospitalizations, improving patient engagement, and promoting overall better health for people living with HIV.

However, getting there isn’t easy. SAMHSA's Center for Integrated Health Solutions identifies big hurdles, like funding limitations, workforce shortages, and resistance to organizational change. Despite these challenges, integrated care remains a critical goal—one that could significantly improve the health and well-being of people living with HIV.

And we can't ignore the impact of stigma. The Well Project notes that stigma in healthcare settings can worsen trauma and deter people from seeking care. Training providers in trauma-informed care and cultural competency is essential to creating safe, inclusive spaces for people living with HIV.

How Politics and Society Shape the HIV Experience

The mental health of people living with HIV is profoundly influenced by the broader social and cultural context in which they live. Systemic stigma, discrimination, and social exclusion intersect with issues like racism, homophobia, transphobia, and economic inequality, creating significant barriers to care and support. Research published in the American Journal of Public Health illustrates how these overlapping forms of discrimination increase stress, social isolation, and complicate access to healthcare. The study presents a framework demonstrating how HIV-related stigma, when combined with other forms of social marginalization, can negatively impact treatment adherence and overall health outcomes for people living with HIV.

HIV criminalization laws are another piece of this complex puzzle. As highlighted by Xtra Magazine, Canada and the U.S. still lead the world in criminalizing HIV, perpetuating stigma and further alienating those affected. Furthermore, the World Health Organization notes that discriminatory policies in employment, housing, and education create additional barriers, directly impacting mental well-being. Media and entertainment also plays a critical role. Sensationalized coverage and inaccurate portrayals continue to fuel harmful stereotypes, adding to the stigma people living with HIV experience.

Cultural and religious beliefs in certain communities can further exacerbate HIV-related stigma, leading to isolation, rejection, or even violence. UNAIDS emphasizes the importance of addressing these deeply ingrained attitudes.

However, positive messaging also has the power to reshape perceptions. The Undetectable = Untransmittable (U=U) campaign is a key example. HIV.gov explains that effective ART leading to undetectable viral loads prevents transmission, challenging outdated misconceptions and empowering those living with HIV.

This messaging has made a significant impact. Research has shown that U=U reduces anxiety and changes perceptions, helping people with HIV feel less like a threat. Similarly, PrEP (pre-exposure prophylaxis) offers another powerful tool, proving highly effective in preventing HIV transmission and fostering open, honest conversations about sexual health.

Building Resilience: Strategies for Mental Wellness

Supporting the mental health of people living with or at risk of HIV means thinking beyond a one-size-fits-all approach. We need to tackle this from multiple angles. Integrated care models that combine mental health and HIV services are proving to be effective. Programs like the Collaborative Care Model and the Mental Health Integration Programme show how treating the whole person—not just the virus—leads to better outcomes.

Trauma-informed care is crucial for creating environments where people feel truly safe and supported. This means training healthcare workers in sensitive communication, empowering patients in their care, and recognizing how trauma affects health behaviors and outcomes.

Monte Ephraim, a clinical social worker, sums it up: “Everyone has the possibility of living a satisfying and meaningful life, regardless of what happened to them or what health challenges they are living with.” Their approach centers on acknowledging trauma, promoting healing through relationships, and building resilience.

Community-based organizations are also vital. They offer support groups, peer counseling, and advocacy, using the power of shared experiences to reduce isolation and build resilience. For people living with HIV, resilience isn’t just a buzzword—it’s a lifeline. Research highlights that engaging in helpful coping mechanisms, like relying on social support, spirituality, creative expression, and activism can improve resilience. Practices like mindfulness, stress reduction, and positive psychology can also help. Each person’s way of coping will differ, and that’s perfectly fine. What’s important is finding what brings peace and comfort, in whatever form that takes.

Moving Forward: A Call to Action

If we’re serious about ending the HIV epidemic, we have to face the reality that mental health isn’t just part of the equation—it’s central to it. This isn’t a side issue or an optional extra. It's a fundamental piece of the puzzle that must be integrated into every aspect of HIV care and prevention.

To make progress, we need a strong commitment from all fronts—policymakers, healthcare providers, and communities:

• Policymakers: Fund mental health services, integrate mental health care into all HIV programs, mandate trauma-informed training, and address social determinants of health.

• Healthcare Providers: Implement trauma-informed approaches, conduct routine mental health screenings, and build strong referral networks.

• Communities: Challenge stigma, support local organizations, and advocate for policy changes that promote mental health and HIV care.

We’re not just fighting a virus; we’re fighting for the dignity, health, and well-being of people living with HIV. This battle calls for a holistic, compassionate approach that treats the whole person—mind and body. It’s about creating a healthcare system that goes beyond the virus to address the real, lived experiences of those affected.

By integrating mental health care, tackling stigma, and fostering supportive communities, we can help ensure a future where people living with HIV not only survive but thrive. Let’s not just aim for zero new transmissions or deaths; let’s strive for a world where every person living with HIV is valued, empowered, and has the chance to live their fullest life.

Together TakeMeHome: One Year of Progress, Challenges Ahead

A newly published report from the Centers for Disease Control & Prevention (CDC) offers promising initial results from the first year of Together TakeMeHome (TTMH), a groundbreaking program that provides free HIV self-tests by mail to people across the U.S., including Puerto Rico, making it the largest HIV self-testing program in the nation's history. This direct-to-consumer approach aims to address persistent gaps in HIV testing coverage and reach those who have not engaged with traditional testing services, particularly within priority populations disproportionately affected by HIV.

The report reveals that TTMH has already exceeded expectations, distributing 443,813 tests to 219,360 people in its first year, far surpassing its initial goal of distributing 200,000 tests annually. Significantly, 24.1% of TTMH users reported never having previously received HIV testing, demonstrating the program's success in reaching those who may face barriers to traditional testing methods.  This success builds upon the growing recognition of HIV self-testing (HIVST) as a valuable tool in the global effort to increase testing rates and achieve earlier diagnoses. The World Health Organization recommends HIVST as an additional approach to HIV testing services, recognizing its potential to overcome common barriers such as stigma, privacy concerns, cost, and lack of access to clinics.

Successes of TTMH and the Benefits of HIVST

The initial data from TTMH not only highlights the program's impressive reach but also provides valuable insights into its effectiveness in engaging priority populations and identifying new diagnoses. The report shows that 67.9% of TTMH users identify as members of groups disproportionately affected by HIV, including gay and bisexual men, Black women, and transgender women. This targeted reach is particularly important given that these communities often face greater barriers to accessing traditional testing services. Furthermore, the program's success in utilizing dating apps as a primary outreach platform, with nearly 70% of orders originating from these sources, demonstrates its ability to connect with people in online spaces where they feel comfortable. While comprehensive data on new HIV diagnoses among all TTMH users is not yet available, initial findings suggest that the program is successfully identifying people who are unaware of their HIV status. Among a subset of participants who completed a follow-up survey and had not previously reported an HIV diagnosis, 1.9% received a reactive result on their self-test.

These promising results are consistent with the broader benefits of HIVST demonstrated by research on other programs. For example, the eSTAMP study, a randomized clinical trial published in JAMA Internal Medicine, found that participants who received HIV self-tests were significantly more likely to test for HIV at least three times during the trial compared to a control group. Significantly, eSTAMP participants reported 34 newly identified transmissions among members of their social networks who used the study self-tests, highlighting the potential for HIVST to extend its reach beyond the initial user. The TakeMeHome program demonstrated that HIVST can be delivered at a reasonable cost, identifying 18 confirmed new HIV diagnoses in its first year at a cost of $9440 per diagnosis. This cost falls within the range of $3500 to $36,300 per diagnosis reported for traditional HIV testing methods implemented in various healthcare and non-healthcare settings. Moreover, research on the eSTAMP trial, a similar HIVST program, suggests that such programs can be cost-saving in the long run due to their potential to avert new transmissions and reduce lifetime HIV treatment costs. A scoping review published in Patient Preference and Adherence further supports the value of HIVST, finding that it is generally preferred over traditional testing methods due to its convenience, privacy, and the control it affords users.

One of the most significant advantages of HIVST is its ability to combat stigma, a persistent barrier to HIV testing. As noted in the Journal of Public Health Management and Practice, "Many men who have sex with men (MSM) prefer to test for HIV in privacy rather than at clinical settings or testing sites." This preference for privacy is particularly relevant for marginalized communities who may face discrimination or judgment in traditional healthcare settings. HIVST empowers people to learn their status in a safe and confidential environment. The HIV.gov blog succinctly captures this empowerment, stating that "HIV self-testing enables a person to learn their HIV status by placing control directly into the hands of users. With HIV self-tests, people can discreetly and conveniently test themselves in private, bypassing the potential discomfort or discrimination they might face in traditional settings."

Addressing the Needs of Diverse Populations

While promising, TTMH and other HIVST programs must acknowledge that HIV does not affect all communities equally. Disparities in HIV testing rates and outcomes persist, requiring tailored strategies to ensure equitable access to HIVST. For example, testing rates vary across racial and ethnic groups, with Asian people and Native Hawaiian and Pacific Islanders reporting lower rates than some other communities of color.

People who inject drugs (PWID) and those in rural communities face unique barriers to HIV testing. Research suggests that while PWID are willing to utilize at-home testing, structural barriers, such as stigma and limited access to healthcare, result in lower test completion rates. Similarly, rural communities often lack sufficient HIV prevention and testing infrastructure, and residents may face transportation challenges. To address these issues, we must partner with relevant organizations, offer alternative delivery methods, provide clear instructions and support, increase funding for rural programs, and collaborate with rural providers to promote HIVST.

Furthermore, recognizing the intersections of race/ethnicity, gender identity, and immigration status is crucial. Black and Hispanic immigrants face lower testing rates than their U.S.-born counterparts, even with known risk factors. Fear of deportation, fueled by policies like the "public charge" rule, can deter Latinx immigrants from seeking testing. Undocumented African immigrants face similar challenges, compounded by HIV-related stigma within their communities. HIVST programs must partner with organizations serving these populations, provide clear information about confidentiality and its separation from immigration enforcement, and offer culturally appropriate support.

Transgender people, especially transgender women of color, experience disproportionately high rates of HIV. HIVST can offer a more private and affirming option, but programs must be trans-inclusive and address anticipated stigma, which can be a significant barrier to testing. Similarly, people engaged in sex work often face stigma and marginalization, hindering access to healthcare. Outreach efforts should prioritize building trust, ensuring confidentiality, and partnering with organizations that serve this population.

Addressing the unique needs of diverse populations is essential for HIVST programs to achieve health equity and ensure that everyone has the tools they need to know their status and engage in appropriate care and prevention.

Strengthening Linkage to Care

While HIVST programs like TTMH are effective in expanding access to testing and identifying new diagnoses, their true impact hinges on ensuring that people who test reactive are seamlessly connected to appropriate care and support services. As highlighted in my previous blog post, there is a significant gap in linkage to care following HIVST. This gap is concerning, as timely linkage to care is essential for initiating treatment, improving health outcomes, and reducing the risk of onward transmission.

Unfortunately, we lack specific data on linkage to care outcomes for the TTMH program. However, the program website does provide information on the resources available to users who test reactive. These resources include referrals to local testing sites for confirmatory testing, contact information for HIV care providers, and links to support services. While these resources are valuable, they may not be sufficient to ensure that all people who test reactive are successfully linked to care.

To strengthen linkage to care for TTMH and other HIVST programs, we need a more robust and proactive approach. This includes implementing strategies such as:

• Telehealth Follow-Up: Offering telehealth consultations for post-test counseling, linkage to care, and ongoing support can help address logistical barriers and provide immediate access to guidance.

• Partnerships with Local Providers: Establishing formal partnerships with HIV testing sites, clinics, and community-based organizations can streamline referrals and ensure that people have a clear pathway to care.

• Peer Navigation: Utilizing peer navigators who have lived experience with HIV can provide invaluable support and guidance to people navigating the complexities of the care system. Peer navigators can offer emotional support, assist with appointment scheduling, and help address any barriers to accessing care.

• Data Collection and Monitoring: Implementing comprehensive data collection and monitoring systems to track linkage to care outcomes is essential for identifying gaps and areas for improvement. This data can help programs tailor their services to better meet the needs of their users.

By investing in these strategies, we can bridge the gap in linkage to care after HIVST and ensure that everyone who tests reactive receives the timely and comprehensive care they deserve.

Policy Enhancements

The successes of the TTMH program underscore the transformative potential of HIVST to expand access to testing, reach those who have traditionally been left behind, and combat stigma. To fully realize this potential and solidify HIVST as a cornerstone of the Ending the HIV Epidemic (EHE) initiative, we must advocate for policies that support its long-term sustainability, equitable reach, and seamless integration with other health services. This includes:

• Increased Funding: Sustained and increased funding for TTMH and similar HIVST programs is paramount to ensuring their continued operation, expansion, and ability to reach diverse communities.

• Targeted Outreach: Developing and implementing tailored outreach strategies for PWID, rural communities, BIPOC, and other marginalized groups, is essential for addressing the unique barriers they face and promoting equitable access to HIVST.

• Public Awareness Campaigns: Comprehensive public awareness campaigns are needed to promote HIVST, address stigma surrounding HIV testing and status, and educate the public on the importance of knowing their HIV status.

• Integration with Other Services: Integrating HIVST with other health services, such as STI testing and treatment, PrEP, and primary care, can create a more holistic and patient-centered approach to sexual health, facilitating access to a broader range of prevention and care services.

The EHE initiative, launched in 2019, aims to reduce new HIV transmissions in the U.S. by 90% by 2030. HIV testing is a critical first step in achieving this goal. As the CDC aptly states, "The COVID-19 pandemic has shown how critical HIV self-testing services are to sustaining momentum to end the HIV epidemic." TTMH has demonstrated that HIVST can effectively reach those who have not engaged with traditional testing services, combat stigma, and identify new diagnoses.

We must continue to advocate for policies and programs that support HIVST and ensure that everyone, regardless of their background or circumstances, has access to convenient, confidential, and empowering testing options. Together, we can make HIV testing a routine part of healthcare, reduce new transmissions, and move closer to ending the HIV epidemic in the U.S.

Addressing the High Burden of HCV in HIV-Positive MSM

The threat of Hepatitis C (HCV) co-infection casts a long shadow over the lives of men who have sex with men (MSM) living with HIV, demanding a swift and decisive response. Globally, 7% of this group also faces chronic HCV infection—a disproportionately high burden compared to the estimated 1% prevalence in the general population. A recent meta-analysis published in Health Sciences Reports, which synthesized data from 56 studies across various countries, also revealed a 9% global prevalence of hepatitis B virus (HBV) among MSM living with HIV, further highlighting their vulnerability to viral hepatitis co-infection.

While highly effective direct-acting antiviral (DAA) therapies offer a cure for HCV, access to these life-saving medications remains uneven, perpetuating health disparities and undermining global elimination efforts. This disparity is driven by a complex interplay of factors, including shared transmission routes for HIV and HCV, persistent stigma surrounding both viruses, and structural barriers such as poverty, homelessness, and lack of access to healthcare.

To dismantle these barriers and chart a path towards HCV elimination and health equity, we need a comprehensive strategy. This includes expanding ADAP coverage of DAA therapies, streamlining convoluted authorization processes, and implementing tailored interventions that address the unique needs and vulnerabilities of MSM living with HIV.

The Case for DAAs

The advent of direct-acting antiviral (DAA) therapies has revolutionized HCV treatment, offering a cure for a disease that was once considered a chronic, debilitating condition. DAAs are now the standard of care for HCV, providing a safe and effective cure for most people within a relatively short treatment duration, typically 8 to 12 weeks.

The benefits of DAA treatment extend beyond curing HCV. Studies have demonstrated a profound impact on long-term health outcomes, including a lower risk of both liver and non-liver complications. A large, real-world analysis published in JAMA Internal Medicine found that DAA therapy was associated with a remarkable 57% reduction in all-cause mortality among patients with chronic HCV. This underscores the life-saving potential of these medications and the importance of ensuring timely access for all who need them.

The Economics of DAAs

Despite the high initial cost of DAAs, concerns about affordability are countered by the substantial long-term cost savings they generate. A 2022 study in the Journal of Managed Care & Specialty Pharmacy demonstrated that treating HCV with DAAs in the Veterans Affairs (VA) system resulted in $7 billion in savings over a lifetime compared to pre-DAA treatments. These savings are achieved through reduced healthcare utilization, as fewer patients experience the costly complications of advanced liver disease. The study further highlighted that DAAs become less expensive than both pre-DAA treatments and no treatment within just five years, demonstrating a rapid return on investment.

The budgetary impact of expanded HCV treatment extends beyond individual payers like the VA. The Congressional Budget Office (CBO) has reported that increased HCV treatment leads to net budget savings for the federal government due to averted healthcare spending. Even a modest 10% increase in Medicaid treatment rates could save $700 million over 10 years, according to the CBO's estimates. This underscores the fiscal responsibility of investing in HCV elimination efforts, as treating the disease upfront prevents more costly interventions down the line.

Furthermore, the CBO highlights the importance of considering the long-term budgetary impact of HCV treatment, particularly the savings that accrue beyond the typical 10-year budget window. As HCV is a slow-progressing disease, the full economic benefits of treatment may not be realized within a decade. By taking a longer-term perspective, policymakers can better appreciate the true value of investing in HCV elimination and the potential for significant cost savings over time.

The Consequences of Limited Coverage

Despite the transformative potential of DAAs and the compelling evidence for their cost-effectiveness, access to these life-saving therapies remains uneven for people living with HIV (PLWH). A significant barrier is the limited coverage of HCV therapies by some state AIDS Drug Assistance Programs (ADAPs). CANN's HIV/HCV Co-Infection Watch for April 2024 reveals that only 47 out of 56 ADAPs in the United States offer some form of coverage for HCV treatment, meaning that a substantial number of PLWH, particularly those who rely on ADAPs as a safety net, face significant financial barriers to accessing the care they need.

This echoes the challenges faced within Medicaid programs, where restrictive policies driven by cost concerns have historically limited HCV treatment access. A 2024 study published in JAMA Health Forum analyzed data from 39 state Medicaid programs and found that easing restrictions related to liver disease severity, sobriety, or prescriber specialty led to a substantial increase in DAA utilization. Specifically, these policy changes were associated with an increase of 966 DAA treatment courses per 100,000 Medicaid beneficiaries each quarter. This evidence strongly suggests that similar policy shifts within ADAPs could significantly expand access to curative therapies for PLWH.

The consequences of limited ADAP coverage are far-reaching. Without access to DAAs, PLWH face a higher risk of progressing to advanced liver disease, experiencing debilitating complications, and ultimately succumbing to HCV-related mortality. This not only jeopardizes patient health outcomes but also undermines public health efforts to control and eliminate HCV. Furthermore, the financial burden imposed by limited coverage exacerbates existing health disparities. People of color, low-income persons, and those living in rural areas are more likely to rely on ADAPs and also experience higher rates of HCV infection. Denying them access to curative treatment perpetuates a cycle of inequity, further entrenching health disparities and undermining the goal of achieving health justice for all.

Policy Barriers and Provider Discouragement

The path to HCV treatment for MSM living with HIV is fraught with obstacles, a tangled web of restrictive policies and a healthcare system that often fails to prioritize their needs. Compounding the challenges of limited ADAP coverage are state-level restrictions that create a patchwork of barriers, disproportionately impacting vulnerable populations. Stringent eligibility criteria, complex authorization processes, sobriety requirements, and limited provider networks—often justified by cost concerns—prioritize short-term budget considerations over the long-term health and well-being of PLWH.

These policy barriers intersect with personal and systemic biases to create a system that perpetuates inequities in HCV care. A 2019 study published in the International Journal of STD & AIDS revealed that Medicare enrollees and patients with drug abuse diagnoses were significantly less likely to initiate DAA treatment, highlighting the impact of cost-sharing requirements and stigma. Stigma surrounding substance use can discourage patients from seeking treatment or disclosing their drug use history, while providers may harbor biases about the effectiveness of DAAs in this population.

This complex landscape also contributes to provider discouragement, further limiting access to HCV care. The administrative complexity of ADAPs, with their varying formularies, eligibility criteria, and authorization processes, creates a confusing and burdensome system for providers. Many providers also lack familiarity with newer DAA regimens and the latest treatment guidelines, particularly those who primarily focus on HIV care. Persistent stigma surrounding HCV and substance use can also lead to provider fatigue and bias, compounding these challenges.

Moving Towards Equitable HCV Care and Elimination

The evidence is clear: MSM living with HIV face significant and unjust barriers to accessing life-saving HCV treatment. We must act decisively to dismantle these barriers and create a healthcare system that prioritizes equity, accessibility, and the well-being of all PLWH.

Achieving this vision requires a bold policy agenda that addresses the systemic issues driving disparities in HCV care. We must demand action from policymakers and hold them accountable for creating a more just and equitable healthcare system.

Policy Changes are Needed:

1. Mandate DAA Coverage for All ADAPs: Every state ADAP must be required to cover all FDA-approved DAA regimens for HCV treatment, ensuring that no PLWH is denied access to a cure based solely on their geographic location.

2. Streamline Prior Authorization Processes: The administrative burden of navigating complex and inconsistent prior authorization processes within ADAPs discourages both providers and patients. We must demand a streamlined, standardized system, ideally with a single prior authorization form that can be used across all payers, including ADAPs and Medicaid, as recommended by NASTAD. Better yet, remove the need for prior authorizations all together.

3. Increase Funding Allocations for ADAPs: ADAPs are a lifeline for PLWH, yet these programs are chronically underfunded. We must advocate for increased federal and state funding allocations, ensuring they have the resources to provide comprehensive HCV care, including DAA treatment, without imposing undue restrictions.

4. Expand Financial Assistance Programs for Medicare Enrollees: Medicare's cost-sharing requirements create a significant financial barrier to DAA access for many PLWH. ADAPs must expand financial assistance programs to cover out-of-pocket costs for DAA treatment for Medicare enrollees with HIV/HCV co-infection.

These policy recommendations are concrete steps that can be taken to create a more just and equitable healthcare system for PLWH. By advocating for these changes, we can dismantle the barriers to HCV treatment, improve health outcomes, and move closer to eliminating HCV.

Tailored Interventions: Addressing the Unique Needs of MSM Living with HIV

While expanding ADAP coverage and addressing cost concerns are crucial, policy changes alone are insufficient to achieve equitable HCV care. We must also invest in tailored public health interventions that address the unique needs of MSM living with HIV.

This includes:

• Targeted Testing and Linkage to Care: MSM living with HIV should be routinely screened for HCV, with a focus on re-engaging those who have fallen out of care or disengaged from traditional healthcare settings. Implementing targeted testing programs in community-based organizations, substance use treatment facilities, and MSM-centric settings, coupled with robust linkage to care services, is essential.

• Peer Support Programs: Peer support programs, led by MSM living with HIV who have successfully navigated HCV treatment, can be powerful tools for addressing stigma, providing emotional support, and promoting adherence to DAA regimens.

• Provider Training and Education: Provider training programs are necessary for addressing implicit bias, promoting harm reduction, and fostering patient-centered communication. These programs should equip providers with the knowledge, skills, and attitudes necessary to provide equitable and compassionate care to all PLWH, regardless of substance use history or other social challenges.

By investing in these tailored interventions, we can create a more responsive and equitable healthcare system that meets the unique needs of MSM living with HIV. Combining policy reform with targeted programmatic efforts will empower PLWH to access life-saving HCV treatment, improve health outcomes, and advance our shared goal of eliminating HCV.

A Shared Responsibility for Health Equity

The disproportionate burden of HCV among MSM living with HIV is a reminder of the persistent health disparities that plague our healthcare system. We have the tools to eliminate HCV, yet systemic barriers and inequities continue to impede access to life-saving treatment for many vulnerable populations.

Addressing HCV co-infection among MSM living with HIV is critical for improving patient health outcomes and essential for achieving broader public health goals, including the Ending the HIV Epidemic (EHE) initiative. Eliminating HCV among PLWH will reduce liver-related morbidity and mortality, improve overall health, and contribute to reducing HIV transmission.

Achieving HCV elimination and health equity for all PLWH is a shared responsibility. Policymakers must enact bold reforms that expand access to DAAs, simplify authorization processes, increase funding for ADAPs, and address systemic inequities. Healthcare providers must embrace patient-centered care, commit to ongoing education, and actively dismantle stigma and bias. Communities must mobilize to advocate for change, support peer-led initiatives, and create a culture of support and empowerment for PLWH.

The time for action is now. By working together, we can create a healthcare system that upholds the dignity and well-being of all PLWH, ensures equitable access to life-saving HCV treatment, and paves the way for a future free from the burden of this devastating disease.

Breakthroughs in HIV Research from CROI 2024

This month, the global health community convened at the Conference on Retroviruses and Opportunistic Infections (CROI) in Denver, spotlighting groundbreaking advancements in HIV research and treatment. This year's conference highlighted significant progress in long-acting HIV therapies and innovative strategies for pediatric HIV care, pointing towards a future where HIV management is more effective and less burdensome.

Key discussions focused on the success of long-acting treatments like Cabenuva (cabotegravir and rilpivirine), which have demonstrated remarkable efficacy in clinical trials, offering new hope for those challenged by daily medication regimens. These developments promise to enhance adherence and improve the quality of life for millions living with HIV.

Advancements in HIV prevention were also notable, with the introduction of once-weekly oral treatments and the confirmation of safety for HIV prevention methods during pregnancy. These innovations expand the tools available to combat HIV transmission and emphasize the need for accessible and inclusive prevention strategies.

Additionally, the conference highlighted the importance of addressing co-occurring conditions such as liver disease and cardiovascular risks in people living with HIV. The exploration of pediatric HIV treatment also showed promising paths towards ART-free remission in children, potentially leading to a cure for young patients.

The role of community-engaged research was underscored, ensuring that the developments reflect the needs and voices of those most affected by HIV. The insights from CROI 2024 mark a path forward in the HIV fight, characterized by innovation, collaboration, and a commitment to enhancing the lives of those impacted by the virus.

Advancements in Long-Acting HIV Treatments

The landscape of HIV treatment and prevention is undergoing a significant transformation, heralded by the advent of long-acting therapies. These innovations promise a new era of convenience and efficacy, potentially changing the lives of millions of people living with HIV (PLWH) worldwide.

At the forefront of this shift are long-acting injectable treatments, such as Cabenuva (cabotegravir and rilpivirine), which have demonstrated remarkable success in clinical trials. A new study reveals that "These findings open up new possibilities for millions of people with HIV, particularly those whose health suffers due to challenges of daily pill taking." This statement underscores the potential of long-acting injectables to revolutionize HIV treatment by alleviating the daily burden of pill-taking, with more than 90% of participants receiving their injections on time.

The development of ultra-long-acting formulations, such as the cabotegravir injection for HIV prevention, represents another leap forward. With a predicted half-life significantly longer than existing formulations, these treatments offer the promise of even greater adherence and convenience, potentially reducing the frequency of dosing to just 3 times a year.

Moreover, the integration of broadly neutralizing antibodies (bnAbs) with long-acting antiretrovirals is opening new avenues for more durable treatment options. As Liz Highleyman summarizes, "Broadly neutralizing antibodies appear to work well with lenacapavir or cabotegravir in long-acting regimens for HIV treatment, but studies are still in early stages." This collaboration between bnAbs and long-acting antiretrovirals has shown promising results, with studies reporting up to 95% of participants maintaining viral suppression.

Apart from injectable treatment options, the introduction of a once-weekly oral HIV treatment presents another long-acting option for patients who prefer treatment without needles. The convenience of a once-weekly regimen cannot be overstated, with one researcher emphasizing the importance of such developments: "Developing once-weekly treatment options could help meet the needs of each person, aiming toward maximizing long-term outcomes for people with HIV." This approach has demonstrated remarkable efficacy, with over 90% of participants maintaining viral suppression, showcasing the potential of once-weekly treatments to significantly enhance adherence and, consequently, the effectiveness of HIV treatment.

Breakthroughs in HIV Prevention

In addition to advancements in treatment regimens, significant progress has been made in ensuring the safety of HIV prevention methods during pregnancy. The use of the vaginal ring and oral PrEP has been thoroughly evaluated, with findings affirming their safety for pregnant women—a critical consideration given the increased vulnerability to HIV infection during pregnancy. Remarkably, "95% of deliveries were at term and 4% were preterm, with no study participants acquiring HIV," highlighting the effectiveness and safety of these prevention tools in protecting both mothers and their unborn children from HIV.

Furthermore, the Together Take Me Home project has made significant strides in expanding access to HIV prevention through the distribution of HIV self-test kits. In just nine months, the project saw over 181,558 orders placed, with 337,812 tests distributed, many to people who had never tested for HIV or had not tested in over a year. Sixty percent of all orders contained enough information to describe participants, with 61% from men reporting male partners in the past 12 months, 10.7% from gender-diverse persons, and 10% from Black women. This initiative underscores the importance of meeting people where they are, providing accessible and confidential testing options. As Dr. Neblett Fanfair noted, "This shows how impactful this is to meet people where they are with what they need to be met with. We’re really excited that it’s not just about HIV self-tests, but it also opens the door to STI testing and PrEP as well," highlighting the project's role in broadening the reach of HIV prevention efforts.

Addressing Co-Occurring Conditions

The intersection of HIV with other health conditions underscores the complexity of care required for people living with HIV. Recent research has brought to light significant advancements in addressing co-occurring conditions, such as liver disease and cardiovascular risks.

A groundbreaking study on the use of semaglutide has shown promising results in reducing the severity of metabolic dysfunction-associated steatotic liver disease (MASLD) in people living with HIV. MASLD, characterized by excessive fat accumulation in the liver, poses a significant risk of progressing to more severe liver diseases. The introduction of semaglutide, a medication initially used for diabetes and weight management, into the treatment regimen for PLWH has marked a notable advancement, with participants experiencing "an average 31% reduction in liver fat." This significant decrease highlights semaglutide's potential as a therapeutic agent in managing liver health in people living with HIV.

Furthermore, the issue of cardiovascular health in PLWH has been brought to the forefront by recent findings indicating that current tools may significantly underestimate the risk of cardiovascular events in this population. Notably, "Cardiovascular event rates were higher overall, with cisgender women experiencing about two and a half times more events than predicted." This discrepancy underscores the need for more accurate assessment tools and tailored prevention strategies to mitigate the elevated risk of cardiovascular diseases among people living with HIV.

Additionally, research into prostate cancer screening among men with HIV has revealed a concerning "screening gap." According to a study, men with HIV were significantly less likely to receive PSA screening prior to diagnosis, leading to a higher incidence of advanced prostate cancer at the time of diagnosis. This gap in screening and early detection highlights the need for increased awareness and proactive screening measures for men living with HIV, to ensure timely diagnosis and treatment of prostate cancer.

Innovations in Pediatric HIV Treatment

Pediatric HIV treatment is witnessing remarkable innovations, particularly in the areas of early treatment and the exploration of long-acting therapies. These advancements are not only enhancing the quality of life for children living with HIV but also paving the way toward potential remission and a future where daily medication may not be necessary.

In a new study highlighted in POZ and further discussed on HIV.gov has brought to light the significant potential of initiating ART within the first days of life. This approach has led to ART-free remission in some cases, with "four of the six children achieving ART-free remission." Such findings are groundbreaking, as they suggest that early intervention can drastically alter the course of HIV in children, offering a glimpse into the possibility of a cure or long-term remission. The impact of these results cannot be overstated, as they represent a monumental step forward in the quest to end HIV as a lifelong condition.

Further extending the scope of pediatric HIV treatment, recent research has also explored the benefits of long-acting HIV treatments for adolescents. Long-acting, injectable antiretroviral therapy has been found safe and effective in adolescents with HIV viral suppression. This study marks the first instance where adolescents with HIV have an alternative to daily pills for treatment, showcasing very encouraging outcomes. All participants in the study remained virally suppressed, and none experienced serious adverse events related to the drug regimen. This advancement is particularly significant as it addresses one of the major challenges in adolescent HIV care—adherence to daily medication. By providing a less frequent dosing schedule, long-acting treatments can significantly ease the treatment burden on young patients and their families.

Community-Engaged Research and Future Directions

These groundbreaking advancements in HIV research and treatment are increasingly being achieved thanks to community-engaged research. This approach not only enriches the research process but ensures that the outcomes are more aligned with the needs and realities of those most affected by HIV. Dr. LaRon Nelson's insights underscore the critical role of community involvement: "If we don’t have community voices or engaged communities, we aren’t going to be asking the right questions." This perspective highlights the indispensable value of incorporating diverse community experiences and insights into the research process, ensuring that the studies conducted are both relevant and impactful.

A prime example of the success of community-engaged research is the implementation and study of Doxy-PEP (doxycycline post-exposure prophylaxis) for the prevention of sexually transmitted infections (STIs) alongside HIV. Research and real-world application in San Francisco have demonstrated remarkable outcomes, with bacterial STIs decreasing by nearly 60% in less than a year at the San Francisco AIDS Foundation’s (SFAF) clinic. This significant reduction showcases the potential of community-engaged approaches in addressing public health challenges effectively. The collaboration between researchers, healthcare providers, and community members facilitated the rollout of Doxy-PEP, leading to substantial public health benefits.

Furthermore, the ongoing exploration of HIV vaccine research represents another frontier where community engagement is vital. As discussed in HIV.gov’s updates from CROI 2024, the development and testing of HIV vaccines are critical to the future of HIV prevention. Engaging communities in this research not only helps in designing more effective studies but also in building trust and ensuring broader acceptance and uptake of future vaccines.

Conclusion

CROI 2024 showcased significant progress in HIV research, highlighting innovations in long-acting treatments, prevention strategies, and care for co-occurring conditions and pediatric HIV. These advancements signal a shift towards more effective, less burdensome HIV management, tailored to meet diverse needs. They not only aim to improve the lives of millions living with HIV but also to significantly reduce new infections.

These developments are the culmination of years of research, collaboration, and community engagement, emphasizing the crucial role of community-involved research in addressing the real needs and voices of those affected by HIV.

To fully leverage these breakthroughs, continued research investment and stronger community partnerships are vital. We're at the cusp of a new era in HIV care, characterized by innovative treatments and comprehensive prevention efforts, all geared towards improving the lives of those living with or at risk for HIV. While these innovations are welcomed, necessary, and exciting, we must also recognize the policy landscape that affects access to care. In order to End the Epidemic, we must ensure consistent, open, equal access to individualized care and medications.

Integrating HIV Treatment with Gender-Affirming Care

In our pursuit of health equity, it's critical to focus on the specific needs of transgender people living with HIV, particularly regarding the safe and effective use of antiretroviral therapy (ART) alongside gender-affirming hormone therapy (GAHT). A groundbreaking study conducted by Thomas Jefferson University and the National Institutes of Health (NIH) has significantly advanced our understanding of ART with GAHT for transgender people, specifically women, living with HIV. This research, a direct response to the previously identified gaps in knowledge, offers concrete evidence on the safety of such co-administration, marking a shift in how healthcare providers can approach treatment plans for their transgender patients.

Until now, the apprehension to combine ART and GAHT has led a significant portion of the community to modify their treatment regimens due to fears of adverse interactions. A 2017 study in LGBT Health reveals the depth of this issue, noting that among study participants 40% reported not taking ART (12%), GAHT (12%), or both (16%) as directed due to drug-drug interaction (DDI) concerns. The recent study, published in Clinical and Translational Science, directly addresses these concerns by analyzing the pharmacokinetic interactions of doravirine, tenofovir (key components of ART), and estradiol (a common estrogen used in GAHT). The findings reveal that these medications, when used together, do not significantly impact each other's effectiveness, providing a much-needed evidence base to support the concurrent use of ART and GAHT.

For transgender women living with HIV, the integration of ART and GAHT is essential not only for managing their HIV status but also for affirming their gender identity. This aspect of their healthcare journey underscores the need for clear, evidence-based guidelines that address the co-administration of these treatments without compromising their efficacy or safety. The recent study's findings mark a significant advancement in our understanding, challenging previous assumptions about potential DDIs.

Safety of Co-administration

The study, "Bidirectional pharmacokinetics of doravirine, tenofovir, and feminizing hormones in transgender women (IDentify): A randomized crossover trial," examines the pharmacokinetic parameters—essentially, how the body absorbs, distributes, metabolizes, and excretes a drug—of doravirine and tenofovir (two key antiretroviral medications) when administered alongside estradiol, a common estrogen used in GAHT.

The findings are significant: the co-administration of these ART medications with estradiol does not significantly alter the effectiveness of each drug. Specifically, the study observed that the levels of doravirine, tenofovir, and estradiol remained stable when used together, indicating that these medications can be safely combined without diminishing their ability to treat HIV or support gender transition.

This research addresses a critical gap in healthcare for transgender women living with HIV, who have historically faced uncertainty about combining ART with GAHT. By demonstrating that these medications do not interfere with one another to a clinically significant degree, the study reassures patients and healthcare providers alike that pursuing both HIV treatment and gender affirmation simultaneously is both safe and viable.

Furthermore, this study lays the groundwork for more informed healthcare practices. It underscores the importance of considering the unique needs of transgender people in HIV treatment plans and encourages ongoing research to explore the interactions between various ART and GAHT regimens. Ultimately, this evidence supports the development of comprehensive care models that fully address the health and well-being of transgender women living with HIV, ensuring they receive effective, affirming care without compromise.

Advancing Guidelines and Communication for Integrated Care

For providers, this new data addresses the concerns expressed in a prior literature review in the Journal of the International AIDS Society, which noted the "insufficient data to address DDIs between ART and feminizing hormone regimens." Now, with fresh insights available, the emphasis can shift to using this updated information to craft and apply comprehensive guidelines and to kickstart education campaigns for providers and the community that align with these new findings.

The urgency now is to convert this research into practical, accessible guidelines that assist healthcare providers and transgender women in navigating the safe use of ART alongside GAHT. It's critical to update healthcare providers with the latest evidence, ensuring they are well-equipped to guide their patients through informed treatment choices. This means integrating new research findings into professional development programs and encouraging open, knowledgeable conversations between healthcare professionals and their patients about the combined use of these treatments.

Expanding the Scope: Inclusive Research for Transgender Men and Non-Binary People

While significant strides have been made in understanding the co-administration of antiretroviral therapy (ART) and gender-affirming hormone therapy (GAHT) for transgender women, our knowledge remains limited when it comes to transgender men and non-binary people living with HIV and seeking gender affirming care. With the completion of this major study by Thomas Jefferson University and the NIH, the next step is to expand our research efforts to encompass the full spectrum of transgender experiences, ensuring that future studies are as inclusive and comprehensive as possible.

Transgender men and non-binary people face unique healthcare challenges that are often overlooked in medical research. This oversight not only perpetuates health disparities but also leaves significant gaps in our understanding of how ART interacts with testosterone and other aspects of gender-affirming care utilized by transgender men and non-binary people. To ensure that all members of the transgender community receive comprehensive and affirming care, it is imperative that future studies specifically investigate these interactions.

The call for research extends beyond the pharmacokinetic interactions to encompass the physiological, psychological, and social outcomes of combining HIV treatment with gender-affirming care across all gender identities. Such studies should aim to provide a holistic understanding of treatment efficacy, safety, and the overall well-being of gender diverse patients, regardless of their specific gender identity or the nature of their gender-affirming treatments.

By advocating for and conducting research that includes transgender men and non-binary people, we can move towards a healthcare model that truly embraces diversity and inclusivity. This approach not only enriches our collective knowledge but also ensures that healthcare practices and guidelines are reflective of the needs of the entire transgender community. It is through this comprehensive understanding that we can improve care, enhance treatment adherence, and ultimately support the health and well-being of all transgender people living with HIV.

Mobilizing for Inclusive Healthcare Reform

The recent advancements in understanding the co-administration of antiretroviral therapy (ART) and gender-affirming hormone therapy (GAHT) represent a significant step forward. However, the journey towards fully supporting the health and well-being of all transgender people living with HIV continues. We must intensify our efforts in advocacy, education, and policy reform to ensure equitable treatment for everyone. Here's how different stakeholders can contribute:

For Healthcare Providers:

• Educate Yourself: Actively seek out and participate in continuing medical education (CME) opportunities focused on the latest research in ART and GAHT co-administration. Utilize resources from reputable organizations such as the World Professional Association for Transgender Health (WPATH) and the Centers for Disease Control and Prevention (CDC).

• Practice Inclusive Care: Implement guidelines and practices in your clinical setting that respect and address the unique needs of transgender patients. Ensure that your staff is trained in cultural competency regarding transgender health issues.

For Researchers:

• Fill the Research Gaps: Prioritize studies that explore the long-term health implications of ART and GAHT co-administration, especially for underrepresented groups within the transgender community, such as transgender men and non-binary people.

• Collaborate with the Community: Engage with transgender communities to ensure that research is inclusive, relevant, and respectful. Consider community-based participatory research (CBPR) approaches to involve community members in the research process.

For Policymakers:

• Develop Evidence-Based Guidelines: Work with medical experts and advocates to create and enforce guidelines that facilitate the safe co-administration of HIV medications and gender-affirming therapies. These guidelines should be based on the latest research and best practices.

• Support Access to Care: Advocate for policies that remove barriers to accessing both HIV treatment and gender-affirming care. This includes ensuring coverage by insurance providers and addressing legal and systemic obstacles that transgender people face.

For Advocates and Community Leaders:

• Raise Awareness: Use your platforms to disseminate accurate information about the safety and importance of integrating ART with GAHT. Highlight stories and data that underscore the positive impact of affirming care.

• Mobilize Support: Organize campaigns to advocate for improved healthcare policies, increased research funding, and greater awareness of transgender health needs. Collaborate with healthcare providers, researchers, and policymakers to amplify your efforts.

Together, we can bridge the gaps in care and knowledge, creating a future where every transgender person living with HIV has access to the treatments they need, free from stigma and barriers. Let's commit to a healthcare environment that celebrates diversity, champions inclusivity, and ensures comprehensive care for all.

Transgender Community's Fight Against Systemic Discrimination

Transgender people grapple with profound healthcare barriers, intensified by systemic discrimination including a recent surge in legislative actions aimed at curtailing their rights. The National Center for Transgender Equality's (NCTE) 2022 U.S. Trans Survey (USTS) - the largest of its kind - highlights these impediments, demonstrating how discrimination not only obstructs access to general healthcare but also critically undermines HIV prevention and treatment efforts. This situation is compounded by healthcare providers' lack of familiarity with transgender health issues and the absence of supportive policies, exacerbating health disparities among transgender people. In the face of an unprecedented wave of anti-trans legislation in the last several years, the imperative for swift, decisive action to safeguard equitable healthcare access has never been more urgent.

Navigating the Healthcare Landscape for Transgender Communities

The 2022 USTS Early Insights Report underscores the significant healthcare barriers transgender folks face, characterized by systemic discrimination and economic challenges. This comprehensive survey, gathering insights from over 92,000 respondents, sheds light on the challenges confronting both binary and nonbinary transgender people.

Challenges in Healthcare Access and Provider Education

A notable 42% of USTS respondents have found themselves in the position of educating their healthcare providers about transgender care, underscoring a critical gap in medical education. This necessity not only burdens transgender people but also reflects wider issues of healthcare accessibility and inclusivity. Additionally, prohibitive costs deter 25% of the community from seeking necessary medical care, highlighting the financial barriers obstructing access to essential services.

The pervasive lack of provider education on transgender health issues is further critiqued in an American Medical Association’s Journal of Ethics article, emphasizing the negative impact of this educational deficiency on care quality and accessibility. Addressing this gap is essential for creating a healthcare environment that respects and adequately serves transgender people.

Socioeconomic Impact on Healthcare Access

Economic instability exacerbates healthcare disparities for transgender communities. The USTS reveals that 34% of respondents live in poverty, and 18% are unemployed, significantly diverging from national averages. This financial precarity, compounded by a 30% homelessness rate among respondents which is associated with experiences of housing and employment discrimination as well as experiences of domestic or intimate partner violence, severely limits healthcare access.

Insurance coverage disparities are stark, with 15% of transgender respondents uninsured, nearly triple the rate of the general U.S. population. Additionally, 29% experienced insurance lapses in the year before the survey, jeopardizing access to critical healthcare services, including HIV prevention and treatment.

A Center for American Progress report further highlights the economic barriers that disproportionately affect transgender people's healthcare access, emphasizing the need for policy interventions to mitigate these disparities.

The Toll of Harassment and Violence

Harassment and violence are prevalent issues within transgender communities, with 30% reporting verbal harassment and 39% facing online harassment due to their gender identity over the past year. This hostile environment not only impacts mental and physical health but also deters many from accessing healthcare services for fear of discrimination.

Centers for Disease Control and Prevention (CDC) research reveals that nearly 70% of transgender women experience discrimination, particularly in employment, directly affecting healthcare access and utilization. This discrimination creates significant barriers to health insurance, medical care due to cost, and access to transgender-specific and gender-affirming procedures.

The mental health crisis among transgender people, defined by discrimination, violence, and systemic barriers, is highlighted in a Washington Post feature on transgender healthcare. Nearly half of transgender adults report encountering healthcare providers lacking knowledge in transgender care, contributing to a crisis of depression, anxiety, and suicidal ideation. Addressing this crisis requires systemic changes in healthcare delivery and education to ensure comprehensive healthcare services are inclusive, accessible, and culturally competent.

Addressing Discrimination's Impact on HIV Risk in Transgender Communities

Discrimination against transgender people is a profound social injustice, critically escalating HIV risk. The CDC's report on the Prevalence of Discrimination reveals that nearly 70% of transgender women face discrimination that acutely affects employment, housing, and access to healthcare opportunities. These obstacles represent an incredible public health challenge, directly undermining efforts to combat HIV.

Discrimination leads to a marked hesitancy among transgender people to seek healthcare, including essential HIV testing and treatment. This hesitancy is intensified by a lack of culturally competent healthcare providers who understand the specific health needs of transgender people. The CDC highlights the critical role of HIV testing as the cornerstone of treatment and prevention, pointing out a significant diagnostic gap among transgender women living with HIV. This underscores the pressing need for healthcare environments that are both accessible and affirming.

Transgender women, especially those of color, face a myriad of societal challenges that increase their risk of HIV. The CDC's report on Syndemics outlines how factors like condomless anal intercourse, homelessness, incarceration, and substance use, compounded by discrimination, heighten this risk. A comprehensive approach that includes social support, housing stability, and anti-discrimination initiatives is essential to address these interconnected challenges. Despite the critical role of social support, the CDC also notes the limitations of support networks in mitigating the HIV risk associated with violence and harassment. This calls for a broader, systemic strategy to address the root causes of discrimination and violence against transgender people.

In addressing HIV risk, it's crucial to recognize the specific challenges faced by transgender men, highlighting the need for prevention strategies tailored to their experiences. Misunderstandings about the HIV risk for transgender men, particularly those engaging in sexual activities with cisgender men, overlook the reality that a segment of this community is involved in behaviors that increase their HIV and STI exposure. This issue is exacerbated by the insufficient HIV prevention resources tailored to transmen and their underrepresentation in health research. The dynamics of power within their sexual relationships can complicate safe sex practices. Factors like the heightened libido from testosterone therapy may lead to riskier sexual choices, further influenced by societal discrimination. Effective interventions must therefore embrace inclusive healthcare and societal support, promoting environments where transgender men can confidently express their sexuality while ensuring their health and well-being.

PrEP and Hormone Therapy: Navigating Concerns

Pre-exposure prophylaxis (PrEP) is a key strategy in preventing HIV among transgender people at risk. Despite its proven effectiveness, the adoption of PrEP by transgender women is disproportionately low, impeded by systemic obstacles and concerns about interactions with hormone therapy. The CDC has confirmed that there are no adverse interactions between PrEP medications and feminizing hormones, emphasizing the need to debunk myths and promote PrEP as a cornerstone of HIV prevention.

Echoing these concerns, a MedPage Today article delves into how homelessness, employment discrimination, and violence not only compound the HIV risk but also significantly obstruct access to crucial prevention tools like PrEP. Despite widespread awareness, the translation into action—PrEP uptake—remains alarmingly low among transgender women, spotlighting the chasm between knowledge and accessible, actionable health interventions, widened by entrenched systemic inequalities.

Navigating Legislative Barriers and Societal Challenges

The need for legislative action and provider education to improve healthcare accessibility are illustrated in the story of Robert Eads, a tragic example of the dire consequences of healthcare related discrimination. Eads, a transgender man from Georgia, encountered significant barriers to receiving treatment for ovarian cancer, with numerous doctors refusing care due to his gender identity and ultimately leading to his death. His experience underscores the critical need for healthcare systems that are accessible and inclusive, ensuring that transgender people receive the care they need without discrimination.

Unfortunately, the landscape of transgender rights and healthcare access in the United States is moving in the opposite direction thanks to a surge in anti-trans legislation, marking a concerning trend toward restricting the freedoms and healthcare access of transgender folks. A 2024 report from USA Today highlights this alarming escalation, noting that as of February 14th 130 bills targeting transgender rights had been filed nationwide. This legislative push not only seeks to limit access to gender-affirming care but also poses a broader threat to the visibility and rights of transgender people in public life.

The American College of Physicians (ACP) has voiced concern over the growing number of states implementing bans on gender-affirming healthcare. Following Arkansas's 2021 ban on such care for transgender minors, at least 12 other states have enacted similar restrictions, contributing to a hostile legislative environment that has put over 146,300 transgender youth and young adults at risk of being denied access to vital medical care known to mitigate risks of depression and suicide.

The burgeoning wave of anti-trans legislation casts a long shadow over the lives of transgender people, creating an atmosphere rife with fear and exclusion. The narrative shared by Ashley Andreou in Scientific American brings to light the chilling effect these laws have on both the mental and physical well-being of transgender people and the medical professionals dedicated to their care. Andreou's personal connection to the issue, through the loss of a family member to the mental trauma of transgender discrimination, underscores the profound human cost of these legislative actions. The laws, fueled by deliberate misinformation and detached from evidence-based medical practice, not only threaten the rights and dignity of transgender people but also jeopardize the very essence of patient-centered care.

Critically, the most recent wave of anti-trans legislation specifically targets access to care and even weaponizes accessing care for transgender patients, in and of itself. With some states adopting laws or administrative policies to pursue the medical records of transgender patients, even outside of those particular states, and the refusal of those medical institutions to protect patient privacy at the risk of facing state-sponsored legal challenges.

In the face of such legislative adversity, the call for advocacy and legal resistance becomes ever more critical. The experiences detailed by Andreou, from the criminalization of physicians providing gender-affirming care to the forced closure of clinics like Texas's GENECIS, highlight the urgent need for policies that protect the healthcare rights of transgender people. This legislative hostility not only undermines the autonomy of transgender people but also places an undue burden on healthcare providers, stifling their ability to offer essential care.

Empowering Transgender Health: Education, Advocacy, and Policy Reform

Equitable healthcare for transgender communities hinges on a unified strategy encompassing education, advocacy, and public policy. At the core of this strategy are the CDC's Transforming Health guidelines, which equip healthcare providers with a framework for delivering care that respects the unique needs of transgender people. These guidelines underscore the necessity of a well-informed healthcare team to create an environment that is affirming and respectful for all patients.

The Biden Administration's initiative to fund sex education for trans boys marks a critical step in addressing the educational gaps in sexual health for transgender and non-binary youth. This move fills a crucial need and sets a precedent for future policies aimed at improving health outcomes for transgender youth. It also specifically speaks to a significant gap in even existing outreach to transgender people. Transgender women are over-represented in many studies and programming due to the heightened violence this community faces. Transgender men on the other hand have often been left behind in programming and research - the Biden Administration’s move is unique in its effort to meet the needs of young transgender men.

However, the potential for a rollback of protections under administrations like the previous one's underscores the fragile nature of transgender rights. The ease with which previous gains can be reversed highlights the need for continuous advocacy and vigilance. Advocates must remain prepared to counter any attempts to diminish protections for transgender people, employing a combination of legal, policy, and grassroots strategies to safeguard the rights and health of transgender communities.

Amid systemic barriers and discrimination, advocacy is crucial in securing the rights of transgender people to access gender-affirming care and protection from healthcare discrimination. Key actions include:

• Strengthen Legal and Policy Advocacy: Monitoring policy changes affecting transgender rights, challenging discriminatory policies through legal avenues, and collaborating with policymakers to advocate for inclusive laws.

• Enhance Public Education and Awareness: Leveraging research and reports to educate the public, healthcare providers, and policymakers about the challenges faced by transgender people.

• Mobilize Community and Allies: Organizing community support and direct actions to advocate for inclusive policies at institutional and governmental levels.

• Invest in Research and Documentation: Continuing to document health disparities and experiences of discrimination to support advocacy and policy reform.

• Pursue Strategic Litigation: Using the courts to challenge discriminatory practices and secure legal protections for transgender people. This would be particularly notable if initiated or otherwise supported by executive agencies of the federal government.

Achieving healthcare equity for transgender communities demands:

• Comprehensive training on transgender health issues for healthcare providers to ensure empathetic, respectful care.

• Advocacy for inclusive policies that protect transgender people from discrimination in healthcare institutions.

• Support for gender-affirming care to be included in health insurance coverage and made accessible for all transgender people.

• Development and funding of mental health services tailored to the needs of transgender communities.

• Building supportive community environments that empower transgender people and provide essential resources for their well-being.

By adopting these strategies, we move closer to a future where healthcare equity for transgender people is a reality, reflecting a commitment to human rights and dignity. We can create a healthcare system that recognizes and meets the needs of every person, regardless of gender identity, and moves us closer to Ending the HIV Epidemic with comprehensive and collaborative efforts between allies.

The Prescription for Curing Stigma

The prescription for curing HIV-related stigma begins with acknowledging a critical disconnect: over four decades into the HIV epidemic, medicine has advanced, yet societal attitudes remain anchored in the past. This enduring stigma casts a long shadow over those living with HIV, affecting mental health and quality of life, and fueling the virus's persistence. A recent UK survey highlights this stark reality, illustrating the urgent need to address stigma as a critical part of our HIV response.

As we aim for the 2030 goal of halting new HIV transmissions, it's clear that our approach must evolve. Curing stigma involves more than just medical breakthroughs; it requires a transformative shift in societal attitudes. This shift entails challenging deep-rooted misconceptions, prioritizing science over politics, and amplifying the voices of those living with HIV to educate our communities toward empathy and healing for all.

The Nature and Impact of HIV-Related Stigma

Manifestations in Healthcare Settings

HIV-related stigma in healthcare settings significantly undermines the quality of care and dignity of patients. This stigma manifests in various forms, from overt discrimination to subtle biases in patient-provider interactions. The American Medical Association's Journal of Ethics notes, "Despite legal protections...health care personnel have been known to stigmatize patients with HIV, in some cases refusing to treat them or providing substandard care." This highlights the ethical challenges and the need for empathy in healthcare.

The Centers for Disease Control and Prevention (CDC) advocates for a status-neutral approach in healthcare, focusing on high-quality, culturally sensitive care. This approach is vital in HIV care, where financial and insurance barriers often limit access to services. The CDC's framework aims to normalize HIV treatment and prevention, helping to reduce stigma.

Stigma in healthcare affects individuals' mental well-being and their willingness to seek care, adhere to treatment, and disclose their status. Furthermore, fear of judgment and discrimination can delay diagnosis and treatment, complicating HIV management.

Addressing healthcare providers' stigmatizing attitudes is a critical step in addressing stigma. It requires policy intervention, training, and sensitization to ensure all healthcare providers offer compassionate, stigma-free care to everyone, regardless of HIV status. This is essential for advancing public health and respecting the dignity of those affected by HIV.

Stigma in the Workplace and Society

HIV-related stigma transcends healthcare, significantly impacting workplaces and our broader society. In professional settings, people living with HIV face bias and misunderstanding. The International Labour Organization (ILO) reveals that workplace stigma threatens job security and mental well-being for people living with HIV.

Alarmingly, the ILO found that nearly 40% of respondents believe people living with HIV should not work in close contact with others. This misconception fosters a hostile work environment, leading to isolation and discrimination. Chidi King from the ILO states, “It is shocking that...myths and misconceptions are still so widespread... This survey is a wake-up call to reinvigorate HIV prevention and education programmes.”

Workplace stigma has extensive repercussions, violating workers' rights and hindering inclusive workplace efforts. The ILO advocates for dismantling stigma through education, policy reform, and promoting an empathetic work culture.

Beyond the workplace, societal stigma manifests in social ostracization and stereotypes, affecting daily life and influencing public opinion and policy. This stigma creates barriers to open HIV discussions, testing, and treatment.

Mental Health Implications

HIV-related stigma has a profound impact on the mental health of those living with the virus. Internalized stigma often leads to feelings of shame and guilt, heightening the risk of depression and anxiety. A significant study in AIDS Journal underscores the link between mental health disorders and HIV, revealing that in the U.S., HIV prevalence is notably higher among adults with serious mental illness (SMI), and among people living with HIV (PLWH), rates of major depression and generalized anxiety disorder are substantially higher than in the general population.

The study points out, "Mental health problems can increase the risk of HIV acquisition... Screening and treatment for mental health problems are essential to preventing vulnerable populations from acquiring HIV."

Stigma-induced isolation exacerbates mental health issues and impedes effective HIV management. Societal stigma, driven largely by misconceptions held over from the early days of the epidemic, inhibits open discussions about HIV, testing, and status disclosure, limiting access to tailored mental health resources.

Addressing these challenges requires integrating mental health services into HIV care, public education to counter stigma, and supportive environments in healthcare and communities. By taking a holistic approach to care and community, we can enhance the quality of life of people living with and affected by HIV and bolster the overall response to the epidemic.

The Role of Education in Shaping Attitudes

Comprehensive Sex Education

The fight against HIV-related stigma isn't confined to healthcare facilities or policy discussions; it begins in the classroom with comprehensive sex education, which is key to fostering the understanding and empathy required to eliminate stigma. Leading this educational charge are organizations like the Sexuality Information and Education Council of the United States (SIECUS) and Planned Parenthood Action, advocating for an educational approach that goes beyond traditional biology lessons.

Comprehensive sex education includes a wide range of topics such as sexual orientation, gender identity, relationships, consent, and crucially, HIV and other sexually transmitted infections (STIs). This type of education challenges myths and fears with factual, medically accurate information, fostering a more informed and empathetic understanding among young people.

However, the implementation of comprehensive sex education faces significant challenges, particularly due to the prevalence of abstinence-only programs. The Guttmacher Institute reports that the U.S. federal government spends $110 million annually on these programs, which are proven to be ineffective. Data shows that abstinence-only programs do not effectively prevent STIs or reduce sexual activity or pregnancy among teens. In fact, these programs often deny young people essential, life-saving information about their bodies, reproductive health, and sexuality. Consequently, fewer than half of high schools and only a fifth of middle schools in the U.S. teach the sexual health topics that the CDC considers essential for healthy young people.

The lack of comprehensive and accurate sex education perpetuates HIV stigma. Misconceptions about HIV transmission and the experiences of those living with the virus continue unchallenged, leading to fear and discrimination. This gap in knowledge isolates individuals living with HIV and hinders efforts to end the epidemic.

Navigating the Roadblocks to Inclusive Sex Education

Campaigns documented by the American Civil Liberties Union (ACLU) reveal a troubling trend towards abstinence-only education in public schools. This approach omits critically information about HIV, sexually transmitted infections (STIs), and broader sexual health topics. Notably, such curricula frequently overlook the experiences and needs of LGBTQ+ students, contributing to their marginalization and perpetuating HIV-related stigma.

The landscape of sex education across the United States is inconsistent, as highlighted by the National Conference of State Legislatures. While 19 states mandate sexuality education and 34 require HIV/AIDS instruction, the depth and breadth of these programs vary widely. In some regions, educators face restrictions on discussing topics like intercourse, contraception, and diverse sexual orientations, leaving a significant gap in students' sexual health knowledge.

Resistance from certain community groups and parents, often based on cultural or religious beliefs, adds another layer of complexity to the implementation of inclusive sex education. This opposition can sway local school boards and state legislatures, rendering the content and quality of sex education curricula largely ineffective and quite frankly, useless.

A critical shortfall in trained educators capable of delivering comprehensive, inclusive sex education exacerbates these challenges. Educators require proper training and resources to effectively navigate sensitive topics, including HIV. Without this support, the opportunity to dispel stigma and misinformation is lost.

Addressing these barriers necessitates a concerted effort to advocate for policies supporting comprehensive, inclusive, and medically accurate sex education. Engaging communities and parents in meaningful dialogue about the importance of such education is crucial for fostering a generation well-equipped to understand, empathize with, and support people living with HIV. This approach not only contributes to reducing HIV stigma but also aligns with broader public health goals.

Strategies for Dismantling Stigma

Policy and Community Initiatives

To dismantle the pervasive stigma surrounding HIV, a comprehensive strategy encompassing policy reform and community engagement is required. This approach should involve several key elements:

1. Policy Reform:

• Comprehensive Sex Education: Policies should mandate comprehensive sex education in schools. This education must be medically accurate, culturally appropriate, and inclusive of all sexual orientations and gender identities.

• Workplace Policies: Public and private sector policies should be implemented to protect people living with HIV from discrimination in the workplace. This includes creating supportive work environments and providing education about HIV to dispel myths and fears.

• Healthcare Reforms: Healthcare policies should promote a status neutral approach, ensuring that people living with HIV receive stigma-free, high-quality care. Training healthcare providers to address their biases and provide empathetic care is crucial.

2. Community Engagement:

• Public Awareness Campaigns: Utilizing platforms for public education to challenge misconceptions about HIV. Campaigns should focus on normalizing conversations about HIV, promoting understanding, and reducing fear.

• Empowering Voices of People Living with HIV: Encouraging people living with HIV to share their stories and experiences can humanize the condition and challenge stigma. This aligns with the broader public health goals of organizations like the White House's National HIV/AIDS Strategy.

• Community-Based Programs: Implementing community-based programs that focus on resilience and support for people living with HIV. These programs can provide a platform for education, advocacy, and peer support.

3. Legal Advocacy Against Discriminatory Laws

• Addressing Criminalization: Modernizing laws that criminalize HIV exposure and transmission is vital. In the U.S., 32 states and two territories still have such laws, impacting 68% of people living with HIV. These laws often result in severe penalties, including extended prison terms and mandatory sex offender registration.

• Reform and Impact: Efforts to reform these laws have seen progress, with several states repealing or modernizing HIV-specific laws and removing sex offender registration for revised law convictions. This legal advocacy is key to reducing stigma and supporting the rights of marginalized communities affected by HIV.

4. Global Perspective: Learning from International Success

• Australia's Model: Australia's success in reducing HIV rates highlights the effectiveness of community-led initiatives and government collaboration. Their approach emphasizes peer support and progressive policies.

• Stigma Reduction and Policy Change: Australia's commitment to reducing stigma and removing non-evidence-based laws criminalizing HIV transmission is a key part of their HIV prevention strategy. This approach is seen as a pathway to virtually eliminate HIV transmission by 2025.

• Adopting Global Lessons: Embracing Australia's strategies, which combine policy reform, community engagement, and education, can guide other nations in transforming their HIV response from stigma to understanding and support.

In our journey to eradicate the shadows of HIV stigma, the path forward is clear and urgent. We stand at a pivotal moment where collective will and action can transform the landscape of HIV understanding and care. The Prescription for Curing Stigma is not just a metaphor—it's a call to action, a blueprint for change.

This change demands more than passive acknowledgment; it requires active engagement from every corner of society. Policymakers, healthcare providers, educators, business leaders, and community members must unite in this cause. We need policies that are inclusive and empathetic, healthcare that is stigma-free and compassionate, education that is comprehensive and enlightening, and community support that is unwavering and inclusive.

The voices of those living with HIV are not just stories; they are powerful testimonies that can shatter misconceptions and humanize the epidemic. Their experiences and insights are the most potent weapons in our arsenal against stigma. By amplifying these voices, we not only challenge outdated beliefs but also pave the way for a future where HIV is met with understanding, not fear; with support, not judgment.

As we look towards a future where HIV infections are prevented and every person with HIV lives a life free from stigma and discrimination, let's remember that the power to effect this change lies within each of us. It's time to move beyond awareness to action, beyond empathy to advocacy. Together, we can dismantle the barriers of stigma and fear, creating a world where every person affected by HIV can achieve their full potential for health and well-being.

The Prescription for Curing Stigma is more than a concept—it's a commitment to action, a promise for a better tomorrow. Let's embrace this challenge with determination and hope, knowing that our united efforts will lead us to a stigma-free future and ending the HIV epidemic once and for all.

House Appropriations Mark-Up Alarms HIV Advocates

On July 14th, the U.S House of Representatives Committee on Labor, Health and Human Services, Education, and Related Agencies (LHHS) issued its fiscal year (FY) 2024 appropriations mark-up (Editor’s Note: the mark-up hearing can be viewed here). The bill passed out of committee on a party line vote, with Republicans voting in favor and Democrats voting against. The party split reflects what Democrats have framed as bad faith undermining of agreements on spending levels made in May’s debt limit ceiling deal and include policy provisions geared toward stoking a “culture” war. While the leading issue is incredibly steep cuts to public health programs, including entirely eliminating funding for the previous administration’s Ending the HIV Epidemic initiative (which the Biden Administration wished to continue), the policy riders at issue would also undermine best practices for achieving our public health goals by limiting the types of care, education, and support services communities accessing HIV services might be able to access.

Brass tax, Committee proposed:

• Ending the HIV Epidemic eliminated (-$524M)

• Ryan White HIV/AIDS Program reduced (-$74M, eliminates dental coverage and AIDS Education Training Centers [AETCs], as included in Part F)

• Minority AIDS Initiative reduced (-$32M)

• Substance Abuse Mental Services Administration – MAI eliminated (-$117M)

• Flat funding for the Centers for Disease Control and Prevention’s HIV and HCV prevention programs

• Flat funding for other parts of the Ryan White HIV/AIDS Program, particularly for AIDS Drug Assistance Programs (ADAPs)

Non-HIV related cuts seek to further defund public education and the National Institutes of Health and eliminate Title X and Teen Pregnancy Prevention Programs, the federal work-study program, among other things.

HIV advocates across the country decried the bill, including but not limited to The AIDS Institute, HIV + Hepatitis Institute, AIDS United, the National Association of State and Territorial AIDS Directors (NASTAD), and the National Minority AIDS Council. Southern AIDS Coalition (SAC) has organized a letter for individual advocates and organizations to sign-on. The letter is addressed to Senators Tammy Baldwin and Shelly Moore Capito. Astute observers already recognize this appropriation will not survive the Senate as drafted by the House.

Earlier this year, HIV media outlet The Body called these efforts out for what they are and by title “HIV is Being Swept Up in the Anti-Woke Agenda”. Mandisa Moore-ONeal, Executive Director of the Center for HIV Law and Policy (CHLP), drew a direct link between behavior seen earlier this year in Tennessee as a forebearer of federal moves, “Can’t help but think back to all those…who dismissed us when we said to notice these state funding cuts and to start moving against them but told us again and again ‘It’s just the South’.” The Centers for Disease Control & Prevention’s landing page for regional analysis on HIV identifies that 51% of new HIV diagnoses are among Southerners.

Politically, Southern states are often dismissed by politicians (and advocates) not from here because some of the country’s most conservative strategies are developed in the South. However, the racial diversity of the South is also the reason progressive advocates need to focus on the region. That same diversity is precisely why the nation’s civil rights battles started here and why the forefront of combatting the domestic HIV epidemic, be it advocacy, services, or policy, must be focused here.

The Community Access National Network has already joined our colleagues in signing-on and condemning these cuts which, if enacted would not only bring a halt toward our progress in combatting HIV and other public health concerns, but would signal a dramatic step back and make our goals impossible to achieve. The House’s appropriation amounts and the policy riders included are not only mean-spirited, political jockeying of resources the most vulnerable communities in the country rely upon, they are staggeringly dangerous.

Australia is on Track to End HIV…by Focusing on Treatment

Last week, researchers funded by the National Health and Medical Research Council of Australia published an assessment of Australia’s success in combatting HIV and how the country might meet its goals to end their domestic HIV epidemic. The study is remarkable in many ways and readers should be cautioned to appreciate the various differences in dynamics between the epidemic in their country of residence and Australia. For example, Australia has been willing to get creative with its policy and program environment and infrastructure to address barriers to care – something many other countries, including the United States, might face steeper challenges in doing.

The study, which focused itself in New South Wales and Victoria – the country’s most populous states. While these areas hold large urban populations, Melbourne and Sidney for example, they also have large rural geographies as they get closer to the interior of the country. This isn’t dissimilar to much of the United States, where the coasts and land boarders, to a lesser degree, are well populated and as you get closer to the interior of the country, that population becomes more rural. Rural and urban geographies present very unique dynamics in and of themselves. And those differences should be well-appreciated when considering the findings of the study.

Specifically, the study sought to assess “whether treatment-as-prevention could achieve population-level reductions in HIV incidence among gay, bisexual, and other men who have sex with men (GBM)”.

What’s most interesting about the study – though not necessarily surprising given historical evidence – is it found a positive correlation between increasing viral load suppression and reduction of new HIV diagnoses. But it’s not a 1-to-1 ration. The study found a 1% increase in viral load suppression was associated with a WHOPPING 6% decrease in new diagnoses. That’s not all folks – that decrease was AFTER an adjustment to account for pre-exposure prophylaxis (PrEP), meaning the 1-to-6 correlation between increased viral load suppression and reduction of new diagnoses was INDEPENDENT of PrEP uptake and use.

Now, that’s not bash PrEP. Rather, the authors argue that to achieve maximum benefit, PrEP should continue to be partnered with our understanding of treatment-as-prevention, or, as messaging goes, Undetectable Equals Untransmittable (U=U). Indeed, the data from the study spans 10 years, which means the authors were able to positively demonstrate how PrEP increases the successes related to treatment-as-prevention.

Authors conclude their work with a direct interpretation: “Our results suggest that further investment in HIV treatment, especially alongside PrEP, can improve public health by reducing HIV incidence among BGM.”

This work is especially important as the United States begins considering a nationalized PrEP program and making exceptional investments in doing so. This study very specifically reminds us that we will NOT reach our goal of ending the HIV Epidemic with PrEP alone…but we might with treatment-as-prevention. And if we were forced to do so with treatment alone, we might still get there if we could overcome barriers to care like stigma, unnecessary barriers to care like utilization management practices, employers leveraging their power in the private market, meeting people where they physically are, closing gaps between “available” and “accessible”, overcoming discriminatory actions aimed at harming those already most affected by HIV, and more.

There’s another advantage in not moving onto PrEP with a near exclusive fervor, HIV treatment is directly life-saving. It is the humanitarian and right thing to do to ensure people already living with HIV are receiving the care and treatment and resources and support we need to thrive.

Directly, this data shows us that we will not defeat HIV by only focusing on people not already living with HIV. Rather we must ensure the lion’s share of our work focuses on people already living with HIV.

There’s much work to do and much promise on the horizon.

I’ll leave advocates with this and a request to search internally.

In December, HBO will be releasing a documentary on the Honorable Nancy Pelosi. The trailer for it is out already. In one clip, one quote, Representative Pelosi, one of our dearest champions, summarizes where our work should guide us, “I came here to do a job, not keep one.”

Analysis: Biden’s Budget Request Emphasizes HIV, HCV Goals

On March 9th, President Joe Biden released his proposed budget. As with all Presidents, in all years, and in all sorts of political climates, it outlines what can generously be called a “wish list”. Rarely, even under unified control of the government, does a President’s budget request get a full match. Most often, the budget Congress passes and the budget a President proposes are dramatically different. In 2022 (and in decades past), Biden attributed a quote to his father: “Don’t tell me what you value. Show me your budget – and I’ll show you what you value.” To that end, Biden’s budget proposal has a few notable areas of interest with regard to HIV, hepatitis C, public health in general, and with regard to priorities that might affect various stakeholders along the chain from manufacturing medications to patients.

In a call to advocates, just prior to the full court press release of the President’s budget, White House staff touted a proposed expansion of the Inflation Reduction Act’s (IRA) drug price negotiation provisions to include more medications up for government control of list prices as part of a “savings” counterbalance to expenditures in the proposed budget. It’s important to note no specific medications have yet been proposed under the IRA, any proposed “savings” the government expects to see have not been tested, and, yet again, these potential “savings” are not required to be passed down to patients or even back to the government as a public sponsor of affected plans. Similarly, on the call, officials said the proposed budget would stop “subsidizing” pharmaceutical manufacturers and, immediately thereafter, stated a priority in the budget would be to incentivize innovation as part of the administration’s “Cancer Moonshot”.

There are several HIV-related provisions in the budget request as well. First up, the proposal seeks to expand funding for the Ending the HIV Epidemic initiative started under the previous administration by about $313 million. These dollars would be bolstered by a $90 million increase for HIV prevention activities at the Centers for Disease Control and Prevention (CDC) and a $15 million increase for associated CDC programming around pre-exposure prophylaxis (PrEP) for the prevention of HIV. Notably, these same funds are a portion of dollars Tennessee will be rejecting later this year. Right along with these increases, Biden’s budget seeks to increase Ryan White HIV/AIDS Program funding by $125 million in order to better ensure those already living with HIV have better access to care and treatment.

One of the crowning jewels of the request includes funding for a national PrEP program to the tune of $9.7 billion over 10 years. That particular request may get passed and have some funding, but it is not likely to be funded at this level…or anywhere near sufficiently to meet the need. As it stands, relatively few people who would benefit from PrEP are taking the medication and that number, based on preliminary data for 2022, might be falling again. Largely, PrEP is being used by white men who have sex with men, who are already highly activated, while fewer Black Women and Black men who have sex with men are accessing the medication. A national program may help on this front, but only if it’s handled correctly and carefully. To that end, the CDC has been making a concerted effort to urge primary care providers to adjust their comfort level with prescribing PrEP and having conversations with patients about their sexual activities.

The proposal, however, did not include an increase in funding for Housing Opportunities for People with AIDS (HOPWA), a particular priority of advocates.

Biden’s proposal also includes an increase in funding for the Indian Health Service to better address HIV and Hepatitis C by about $5 million.

In line with these efforts, the Administration unveiled the financial cost of a national Hepatitis Elimination Program (HEP): $11 billion (over 10 years). Now, effort has been in the works for a while, benefitting from a boost of interest from advisor Francis Collins. Biden’s team is already working hard blunt the shock of the request, arguing that making the investment now would, in that same timeframe, actually only amount to about $5.2 billion, thanks to savings realized by a reduction of costs associated with treating long-term impacts of Hepatitis C, including certain cancers. The program would aim to save 100,000 lives by 2050, if goals are achieved.

Of these ideas, HEP likely has the best chance of getting closer to its goal (though, not nearly as close as the Administration or advocates might like), in part, because the idea is largely modeled after cost savings realized in Louisiana and Washington after implementing a “subscription” model of drug purchasing for public programs. While these programs have indeed saved monies for those states, and would do so for the country at large, and increased the number of people accessing curative direct acting agents, they have also stagnated in reaching their goals. That lack of progress after making a giant leap can be attributed to several factors, of which both Ending the HIV Epidemic and a national Hepatitis Elimination Program will face.

Let’s break those factors down real quick by highlighting the Hepatitis C program, which focuses on medication cost and access among at-risk communities near exclusively.

A report from the CDC released last year found just 1 in 3 insured patients who need access to curative treatment for Hepatitis C received it. These are patients whose coverage is already guaranteed. Barriers included payer administrative burdens, including prior authorization requirements, and, likely most importantly, providers just not…providing; not screening, not referring patients for diagnostic testing, not prescribing curative medications for patients (hoping the virus will clear on its own), and not following up to ensure sustained virologic response. And that’s for well connected and engaged patients. Hepatitis C thrives among populations which are routinely hardly reached – people who use drugs, poorer populations, imprisoned people, persons experiencing homelessness, a whole host of folks who need a whole awful lot of help. While the Administration’s proposals would look at encouraging using local pharmacies as points of access and investing in innovative screening tools, like rapid tests, none of those things speak to identifying and treating people most affected by Hepatitis C and HIV. And none of those things would incentivize private providers to increase their frequency of screening for and treating Hepatitis C and HIV.

These lofty goals are admirable. And frankly, they’re achievable. We would also need these tools already mentioned, certainly. But without baseline investments in making HIV and Hepatitis C screening a standard of care, a mandatory inclusion in annual wellness checks, requiring prisons and jails to screen, report to state health departments, and provide curative care on both intake and release, without ensuring clinics are sufficiently funded to have staff to do street outreach, we’re gonna keep missing the mark. Reaching communities that are hardly reached means spending more money per patient in order to reach each patient, not less.

So yes, this is a great start. Yes, these investments need to be made. Yes, this is a great starting point. No, it’s not enough.

Advocates would be well-served to fine tune messaging that thanks allies in power for supporting these tools while also emphasizing that we haven’t yet used all of the tools still in our toolbox. We need to continually re-invest in the foundation of this work while also growing and innovating. Medication is but one tool and without the support for patients to even get to a provider who is willing to screen and treat them, all the medication in the world won’t help.

We need to invest in our own “Yes, and…show me your values…” as we meet with each other, our partners, law makers, policy makers, and the Administration.

Tension in Tennessee: HIV Crisis Looms

Earlier this month, Tennessee announced it would begin refusing federal funding for HIV prevention activities including surveillance activities, which monitor the progress of reducing new HIV transmissions and diagnoses as well as help identify populations and geographies disproportionately affected by HIV. The funding mechanisms targeted by the state for being rejected are known as PS 18-1802 (surveillance and prevention funding) and PS 20-2010 (supporting state health departments in Ending the HIV Epidemic). The U.S. Centers for Disease Control and Prevention (CDC) announcements for recipients of these dollars show Tennessee receives about $6.2 million from PS 18-1802 and just under $2.1 million from PS 20-2010. A letter issued to subrecipients on January 17, 2023 from Dr. Pamela Talley, Medical Director of Tennessee’s HIV, STI, and Viral Hepatitis Programs, the move is supposed to “decrease its [Tennessee’s] reliance on federal funding and assume increased independence,” with an end date for those federal funds to be May 31, 2023. The same letter promises, “Other state initiatives will support all HIV prevention and surveillance staff and activities in funded metro health departments. Our goal is for new service contracts to be in place on” June 1, 2023.

It's not yet entirely clear how Tennessee will make up for the $8.3 million dollars the two funding streams offer but Governor Lee has emphasized a desire to not have “strings attached” that come with federal dollars. It’s also not clear that Tennessee can effectively have those replacement dollars and contracts in place in the less-than-six-months deadline described in the aforementioned letter.

PS 20-2010 specifically funds efforts aimed at addressing needs in Shelby County, where Memphis is situated, as a priority jurisdiction for Ending the HIV Epidemic (EHE), an initiative started under President Trump and continued by President Biden (displaying the long, historical record of bipartisan support regarding HIV). According to AIDSVu, as of 2020, 6,283 people are living with HIV/AIDS (PLWHA) in Shelby County, with 81.7% of those PLWHA whose race is identified are Black. The county’s rate of PLWHA is more than twice that of the state overall (819 vs 314 per 100,000) and the rate of new HIV diagnoses is nearly three times the rate of the rest of the state and the country at large (31 vs 11 per 100,000). The CDC’s dashboard to track EHE progress, known as America’s HIV Epidemic Analysis Dashboard (AHEAD), shows provisional data which indicates a decrease in new diagnoses (this does not mean fewer transmissions), a light increase in linkage to care rates (which could be explained by the decrease in new diagnoses), and a decrease in pre-exposure prophylaxis (PrEP) coverage in years 2020-2022. According to the U.S. Census Bureau, Shelby County’s racial demographics are 54.6% Black and 40.4% white, including Hispanic white persons. Furthermore, the CDC’s 2020 analysis of counties vulnerable to HIV outbreaks included an astounding forty-two counties in Tennessee were among the two hundred twenty top counties at risk, with Hancock County, a rural area which boarders closely to Kentucky, Virginia, and North Carolina, ranks as thirteenth most likely to experience an HIV outbreak. Separately, but certainly related, local news reported a “spike” in new HIV diagnoses in Chattanooga in November 2022.

While the state says it can best manage these dollars, there’s good reason to doubt that and to doubt that this move is not ideologically driven.

For example, the state, through reports to news outlets, has said it will emphasize prevention programming on non-profits to best serve human trafficking victims, first responders, and to prevent perinatal HIV transmission from mothers to children. However, According to Tennessee’s own epidemiological report there were zero perinatal HIV transmissions in 2019. The CDC tracks certain occupational transmissions of HIV and describes the risk associated with certain situations of exposure, which few first responders even experience. To that end, even the CDC admits “occupational HIV transmission is extremely rare” on a page that tracks occupational transmissions among health care personnel, where first responders of ilk are most likely to be at risk. According to the CDC’s page dedicated to occupational transmission, only 58 cases of confirmed occupational transmission have ever been reported in the US, with an additional 150 possible transmissions reported to the agency. Yet and still, since 1999, only one confirmed occupational transmission has occurred among health care personnel. As for human trafficking victims, there’s a bit more opacity there. Likely, those victims are already well-served by those entities already contracted by the current funding mechanisms tied to federal dollars. Limiting or shifting those resources away from well-established service providers risks harming the communities served, reducing access to care, and might run up a pre-existing injunction.

Planned Parenthood just so happens to be one of the contracted service providers for the state and has already run up against the state attempting to strip funding from the entity. In 2012, Judge William Haynes issued an injunction against the state of Tennessee from attempting to stop HIV prevention dollars going to the provider. At the core of the issue, the state through then-Governor Haslam, who committed to defunding Planned Parenthood and public statements to that effect were submitted as evidence of animus against the entity’s First Amendment protected speech and advocacy, sought to refuse grant renewal with Planned Parenthood. Planned Parenthood had responded to a request for proposals (RFP) for these dollars and had previously scored well in the grant application to independent grant reviewers at United Way, the state’s assigned administrative agent for distributing the federal awards. Planned Parenthood also had a successful track record of meeting the grant deliverables associated with the funding, which was mostly centered around condom distribution. Judge Haynes found the state did not have just cause for refusing to continue contracting with Planned Parenthood, given their score, past success with the same funding, and because Planned Parenthood’s “clientele and communities will lose important public health services on matters of grave public health concern.” The injunction still exists today, though it was issued in federal courts, not state courts, because the dollars used are federal dollars.

That said, it’s entirely clear, given the state’s suggestion these dollars will also flow through non-profit providers, if the injunction would not still apply. However, the state has since removed Planned Parenthood from its website listing contracted condom distributors.

Other changes to the state’s website include removing all mention of priority populations identified by the federal government, according to an internet archive, including the MSM (men who have sex with men) taskforce and the transgender taskforce.

The state’s transgender taskforce specifically came to Governor Lee’s attention because of right-wing attacks on Vanderbilt University medical Center’s gender affirming care clinic in later 2022. Vanderbilt receives some state dollars to provide a wide variety of care, not just HIV-related services or gender affirming care for transgender and non-binary people. Conversations with local advocates found a broad understanding the Governor’s commitment to “investigate” Vanderbilt and the entity’s use of state dollars, which would have readily disclosed the CDC’s designated priority populations to include transgender people and which entities are funded by the CDC’s grants.

Tennessee service providers funded by these federal dollars have voiced their concerns repeatedly through media interviews, some specifically pointing towards how this disruption will also be detrimental to the state’s response to the opioid epidemic.

It is currently unclear how much Tennessee’s new health commissioner, former state-Senator from Kentucky Dr. Ralph Alvarado, had a hand to play in these developments. While Alvarado officially began his duties just a couple of weeks ago, he was appointed by Governor Lee in November. Alvarado’s voting record and public statements show animus toward transgender people and abortion access, with him voting to bar transgender girls from playing on sports teams and to increase various abortions restrictions in Kentucky’s 2022 legislative session. When Alvarado was introduced to the Tennessee Senate’s Health and Welfare Committee on Wednesday, January 25, 2023, rather than the typical meet and greet type hearing, Senator Jeff Yarbro, who has a personal connection to HIV, asked Alvarado about the changes and was met with a regurgitation of the state’s letter to health departments. Alvarado is expected to return to the Committee in March, even as time ticks down.

Senator Yarbro and Representative John Clemmons have introduced state legislation which would require Tennessee to pursue and accept federal dollars “to implement programs for the prevention, testing, and treatment of” HIV. These bills largely mirror state statutes which require states pursue all federal dollars made available to state unemployment insurance funds. They make sense on the surface, if federal dollars are available for programming important to the residents of a state, the state should be pursuing those dollars first. The bills, in an already packed legislative session and a hyper-partisan atmosphere, are not likely to pass.

Additionally, Tennessee Representative Steve Cohen (TN9-D) publicized a formal request to Health and Human Services Secretary, Xavier Becerra, about redirecting funding through county health departments to circumvent the state’s moves. The request also copied the CDC’s Director, Dr. Rochelle Walensky.

As of yet, news reports seeking to touch base with the CDC on the status of these changes have found the CDC has not yet been notified of Tennessee’s withdrawal from these funding mechanisms. Without formal notification, those dollars will renew automatically at the end of the grant year.

Part of the struggle in nailing down exactly the extent of the impact refusing these federal dollars will create is the complicated structure behind providing services and funding those employees who provide those services. For many entities funded by multiple streams of federal dollars, employees, measured in grant language as “full-time equivalent” (FTE), may have related duties in which each duty under their job description is funded by separate grants. For example, in a federally qualified health center (FQHC) providing counseling, testing, education, linkage to care, and HIV treatment services, a single employee might be funded by one grant to provide counseling and testing while also being funded by another grant to link patients to care when a test comes back reactive or doing what’s known as partner notification (an activity performed with the participation of a newly diagnosed patient but designed to maintain the patient’s anonymity, if they so desire). Similarly, state disease surveillance infrastructure might employ one or two data analysts to compile data on a number of conditions, each of those conditions funded by separate grants, even though the employee doing the work is the same. So, if said analyst is examining reports on HIV diagnoses one day, another day they might be examining particular sexually transmitted infections – both activities funded by different federal grants. Surveillance activities also include things like monitoring PrEP uptake, a distinctly prevention activity.

Directly speaking to the duties which might be dually funded by multiple grants, the treatment, linkage-to-care, and re-engagement in care activities a FQHC employee might be engaging in will impact people living with HIV, not just those seeking prevention services. This does nothing to speak of health care providers or their support staff who also see their salaries dually funded. So while Tennessee’s refusal of federal prevention dollars does not directly hit funding streams tied to the Ryan White CARE Act grantees, subrecipients, and contracted service providers, PLWHA may well still an impact in the quality of treatment services provided to them due to staffing changes, including those support services which are dually funded for prevention and treatment.

Adding one last layer of complication onto matters, it is also not known how much of Tennessee’s prevention programming generates 340B revenues and savings, which would typically be directed back into prevention programming. Those dollars, if any (there are certainly significant sums involved as each grant requires the recipient, subrecipient, and contractors to propose revenue generating activities and 340B is considered a significant source of those revenue dollars), will be gone from the state’s health ecosystem. With Tennessee also pointing at redirecting dollars from other state initiatives, there’s good reason to believe some, if not all, of those suggested dollars might be from state programs generating 340B revenues. All of that means other programming benefitting from 340B rebates would then see a reduction of programmatic dollars for those programs – whichever they might be. And there’s reason to believe that might be what’s happening, if we look at what New York is proposing in terms of the state usurping 340B revenues to prop up its budget at the expense of grantee service providers who have come to rely upon those monies to meet the needs of patients. Certainly, redirecting 340B revenues to fill budgetary shortfalls from any state away from service providers who are expected to produce accounting as part of their federal grantee status does not serve the intent of the 340B program, “stretch scarce federal resources as far as possible, reaching more eligible patients and providing more comprehensive care.” In order to stretch federal resources, those federal resources must be there to begin with.

With questions remaining on exactly how Tennessee, which up until now, has not directly funded those programs which have been federally funded, advocates and service providers remain nervous about how this whole thing shakes out. Even if there were private interests ready to “save the day” by providing stop-gap funding, those same private interests cannot fund state surveillance activities. There will be a gap, regardless of efforts to fill the gaps that manifest as a result of these types of reckless moves. And those gaps, created on ideological lines and conspiracy theories, might well be something other states pick up on – a fear many advocates, local and national, have looking forward. What is clear, regardless of why one finds themselves as stakeholders in this space, active efforts to fortify both prevention and treatment funding and services are direly needed.

Without prevention properly funded, fewer people will be testing or linked to PrEP. Without testing and PrEP, fewer people will be linked to care upon diagnosis. Without diagnosis, fewer people will receive the treatment and support services necessary to achieve viral suppression. Without treatment and support services, more diagnoses will occur.

Our ecosystem is fragile and very carefully built. Removing one key component risks destroying all of our progress and returning us to a very localized version of the AIDS crisis.

Jen’s Half Cents: Employers’ Role In Ending the HIV Epidemic, Addressing Health Equity, and Retaining Talent

For more than a year, employer voices have complained about an inability to fill open positions and retain talent. Often referred to in news media as “The Great Resignation”, it is a backdrop that also includes labor voices being dissatisfied with certain aspects of their work environment. A Pew Research survey asked those leaving their jobs for insights as to why and the findings centered around shifts as a result of realizing just how the workplace might look in a more modernized world. For two decades, employers of all stripes argued the necessity of being “in office” and the crisis phase of the COVID-19 pandemic proved just how easily modern technology would allow for greater flexibilities in work hours and work place. It also shook open the reality that many workplaces face the same problems experienced in society at large, with Pew’s findings highlighting a general complaint of “feeling disrespected” as a “major” reason for resignations in 35% of respondents. Other areas of employee complaint included a “lack of opportunities for advancement”, “child care”, and “benefits weren’t good” (arguably, child care could be considered a “benefit” offered by an employer, though very few do as United States labor law does not require such an offering). We’re gonna focus on this benefits piece because of a survey published by the Employee Benefit Research Institute earlier this month.

The survey, entitled “Workplace Wellness Programs and the LGBTQ Community”, showed where some of the contours of employee satisfaction can be defined. The survey found LGBTQ employees were generally less satisfied than their non-LGBTQ peers with their jobs across all income brackets, with an overall 44% of LGBTQ employees being satisfied with their jobs and 61% of non-LGBTQ employees being satisfied. Interestingly enough, the difference with satisfaction with benefits offerings (including health, paid leave, and retirement benefits) was less of a gap than overall job dissatisfaction between these cohorts (overall 34% of LGBTQ employees were satisfied with their employee benefits with 45% of non-LGBTQ employees). More dramatically, the survey found LGBTQ employees would prefer higher wages over enhanced benefits. The reason why might be found in the fact that LGBTQ employees were less likely than their non-LGBTQ peers to qualify for benefits, even if they were as likely or more likely to use them when those benefits were offered. Even when getting into the details of what benefits were offered, LGBTQ employees were about as knowledgeable as their non-LGBTQ peers). So what gives?

First, lets acknowledge that, according to this survey, queer folks are more likely to value “work-life balance” over their non-LGBTQ peers to an extraordinary degree (this area being the greatest difference between these cohorts in “What Workers Value”). LGBTQ employees were more likely to have financial struggles and concerns than their non-LGBTQ peers as well. This, combined with the unique health needs of LGBTQ people and the need to identify a queer-friendly provider and the ever-growing threat of violence under a more and more caustic political atmosphere leading to LGBTQ people valuing retirement benefits as high as their non-LGBTQ peers, helps explain why the dollars matter more than the paper of insurance coverage. This is a plight many queer people can personally identify with pin-point precision: “If my life expectancy doesn’t reach the age of retirement, why should I plan for it?” And that’s not too terribly different from “If my insurance isn’t going to cover competent care of my needs, why does it matter if it’s offered?” These things might work for a cisgender, heterosexual couple with 2.4 kids, but they’re not meant for us.

Let’s start with a concrete example. In 2021, the National Women’s Law Center launched a class action lawsuit against Aetna for its fertility benefit design because the design of the benefit offering and language of the policy required those seeking the benefit to document or attest to 12 month or more of “failed” attempts to conceive through penis-in-vagina sexual activity. That type of benefit necessarily excludes single people, same-sex couples, and couples where at least one partner is transgender.

Periodically over the last year (and honestly for years prior but with less of a focus on the role of employers), I’ve spent time discussing with partners how important it is for employers to consider their role in Ending the HIV Epidemic and addressing issues of Health Equity. With employer-sponsored health plans covering nearly 50% of the country’s population, according to Kaiser Family Foundation, these issues don’t come down to the mere fact of offering health benefits but the quality of those benefits as it relates to employee needs. Benefit designs which race to the bottom of a sponsor’s costs are more likely to have narrowed provider and pharmacy networks and restrictive formularies. And despite the fact that Bostock did not necessarily carve out a means for queer employees to argue benefit design might constitute a discriminatory compensation scheme, that is exactly what our community considers when evaluating their job satisfaction and what “competitive” compensation is supposed to look like. And that’s not unique to LGBTQ people, it’s true for employees of all marginalized status. When speaking with a Black, Women colleague recently she stated most directly “If my network doesn’t include a Black doctor for my kids to see, the plan doesn’t matter to me – I can’t count that as part of my compensation, regardless of how my employer looks at this.”

Adding another layer of consideration for employers, as sponsors with some of the greatest amount of leverage to influence the insurance marketplace, ensuring parity in pharmacy benefits with medical benefits is important. The details of those plans matter. To go beyond birth control as an easily relatable example, if an employee living with HIV doesn’t see the provider they’ve gone to for the last decade in-network or an expansive formulary lacking the burdens of prior authorizations for innovative therapies, they’re not gonna find as much value in that benefit. An employee that has to spend hours every six months navigating a prior authorization for their injectable preventative medication is gonna have less personal “bandwidth” to dedicate to work and find less value in that coverage. They might even decide to go out-of-pocket to over those costs and that translates into a meaningful reduction in wages, from the employee perspective. This also speaks directly to the role employers play in Ending the HIV Epidemic – broader coverage of antiretrovirals and infectious disease providers in-network with lower administrative burdens means employees have more meaningful access to care.

At the end of the day, every employee is a patient. We well know in patient advocacy that speaking to these intimate, personal health needs makes people feel cared about and appreciated. It’s why we do what we do in the first place. If employers want to address employee satisfaction, they could invite their employee resource groups for listening sessions on what adequate health benefit offerings look like and then demand those offerings from their contracted payers. It’s a simple series of actions where employers can come out on top in a variety of ways; addressing health disparities, hearing and meeting employee needs, contributing meaningfully to public health goals around HIV, and overall integrating their stated social values into tangible action.

Honestly, it’s all employees and communities really want from their employers - just a little bit of integrity. Evaluating and elevating health benefit offerings is an excellent place to start.

ADAP Advocacy Association Resumes Fireside Chat Retreats

The Community Access National Network (CANN) celebrated the return of ADAP Advocacy Association’s (aaa+) “Fireside Chat” retreats after a two and a half years pause, due to the COVID-19 pandemic. CANN has regularly participated in the Fireside Chats since their inception and enjoys a robust partnership with our sister organization aaa+. The event, held in Wilmington, NC, featured 23 stakeholders, including patients, advocates, and manufacturer representatives and discussed the issues of “utilization management”, the status of Ending the HIV Epidemic (EHE) plans and activities in the South, and the overall impact of the COVID-19 pandemic on public health.

Recognizing current COVID-19 transmission and community level trends, aaa+ developed a robust self-administered testing protocol, wherein participants tested prior to travel, upon arrival, and after returning to their home areas. aaa+ provided rapid self-test kits to each of the attendees. The idea here is important to note, in part, because a chain of transmission was indeed interrupted when one planned attendee reported a reactive test result from their test upon arrival, despite having had a nonreactive test result from their pre-travel test the day before. As a result, the person affected did not actually attend any sessions and appropriately self-isolated. Other attendees expressed gratitude for the reduction of risk, respect of their health and the health of attendee household members, and wished the person affected a speedy recovery. Truly, gathering safely can be done and done well, as demonstrated by aaa+’s efforts here.

Prevention Access Campaign’s United States Executive Director, Murray Penner, presented the issue of payer “utilization management” affecting people living with HIV and AIDS (PLWHA), with respect to broad issues of health care and specific to AIDS Drug Assistance Programs (ADAPs). Opening commentary reminded the audience that utilization management practices affecting health other than HIV also affects access to care for PLWHA and, in some cases, where care or coverage is denied may also result in a patient disengaging from their HIV-specific care. Conversation also discussed utilization management affecting access to pre-exposure prophylaxis for the prevention of HIV (PrEP), in the context of generic antiretroviral (ARV) products, barriers to accessing new products, as a benefit of reducing unnecessary medical tests and preventing contraindicated care. Patients and advocates readily shared how utilization management being a barrier to care is not an “outlier” situation in which patients being denied medically necessary care only occurs in “rare” occasions, rather this is a frequent occurrence with these payer practices routinely and regularly require additional administrative burdens to be met and sometimes requiring circumstances contraindicated by the Food and Drug Administration’s (FDA) approved indications for products or services. Advocates pushed back against the idea “you just want the latest drug like you want the latest iPhone” by emphasizing how the fight against HIV will not be won by having disparities in access maintained along lines of who can afford the most “elite” health care plans. Discussing how advocates can leverage state planning bodies and the role public payers could play in directing managed care organizations to reduce barriers to care as presented under utilization management practices, attendees envisioned robust yet protective access to care aimed at addressing issues of health equity and the critical role of payers in Ending the HIV Epidemic. Attendees also suggested evaluating utilization management practices under a lens of the Affordable Care Act’s rules against “discriminatory plan design”.

A lovely networking lunch followed the first discussion and attendees got the chance to bond with others they had yet to meet or reconnect with those they haven’t seen in a while. Honestly, the amount of respect and joy had during the lunch filled the room, with discussion of other areas of interest and even raucous laughter could be heard from the hallway. The energy generated from the first discussion was readily palpable.

The second discussion, lead by Community Education Group’s Director of Regional and National Policy, Lee Storrow, lead the second discussion on the status of Ending the HIV Epidemic in the South. In providing context for the update, advocates discussed their hopes and expectations when EHE had been announced under the Trump administration. While much energy had been generated, and that in and of itself is exceptionally valuable in the context of the 40-year fight against HIV, the “significant resources” advocates expected have not materialized and the addition of yet another plan has further complicated already layered reporting burdens for service providers funded under Ryan White and other HIV related initiatives and governmental funding streams. One attendee remarked “we’ve been doing the same thing for 30 years and the last 10 haven’t progressed, it’s time to do something different.” As a response, discussion moved to develop planning and programming to include the lens of “economic empowerment” of PLWHA by way of employment opportunities generated from these programs being targeted to recruiting staff from affected patient populations and served zip codes. Another attendee discussed how such an opportunity elevated her own professional experience and helped ensure her program better reflected the demographics of affected communities – ensuring better engagement and more effective outreach in her area. Attendees discussed the idea behind EHE as a “moon shot” but really seems to be hindered by the lack of cohesive systems communication across public health programs, in particular with data sharing between Medicaid and Ryan White funded programs in various states. This highlighted opportunities and barriers, manifesting in strategic planning on what cohesive data sharing might look like in an ideal.  The session ended with conversation regarding “gatekeeping” among certain advocate circles when it comes to accessing institutional and governmental power and a certain lack of transparency as to exact “who” decision makers are due to bureaucratic processes, with the final note being “where is the red tape and who has scissors?”

The first day of planned discussion was capped with a dinner in which attendees continued to share with one another personal and professional details and ideas, making plans to socialize, discussing advocacy development opportunities, upcoming concerns regarding court ruling, legislation, and regulation, and programmatic planning within each other’s specific entities. The theme being “how can we help each other succeed?”

The second day of discussion held the final topic, COVID-19 impacts on public health, facilitated by CANN’s chief executive officer, Jen Laws (me). I opened the conversation by sharing the goal of the conversation being to “define” the impacts of COVID-19 on public health infrastructure and programs. Attendees were asked to share one “good” thing to come out of our collective response to the cOVID-19 pandemic and one “bad” thing (or “something we would like to go away”). Many attendees celebrated the innovation of flexibilities offered by various temporary governmental regulation and the “forced modernization” of health care in many situations – namely, telehealth. These flexibilities, including the continuous coverage requirement for Medicaid programs under the public health emergency declaration, are threatened to end as the public health emergency winds down and advocates attend the Fireside Chat expressed a certain foreboding of returning to “normal”. Specific highlights were given to the downside of relying on telehealth, especially for rural communities lacking the necessary infrastructure to make health care accessible – particularly in hospital deserts. Attendees reflected on the data “blindness” of the current moment, noting the Centers for Disease Control and Prevention’s (CDC) 2020 HIV surveillance report lack of completeness compared to previous years. “Bill Arnold reminded me frequently that the AIDS crisis is still just around the corner. We can’t blink,” I shared with the group to many nods as concerns for patients who dropped out of care weighed on the moment. Moving the discussion forward, attendees identified methods of advocate development and influencing state and federal power by more readily engaging manufacturers in their efforts to prioritize patient voices and experiences. The necessity to recognize the state of advocacy as needing re-development and investment was apparent and the note the event ended on, as attendees reflected the impacts of the COVID-19 pandemic on the public health and advocacy workforce.

While much discussion was had throughout the Fireside Chat, much more was committed to following the event. As with many in-person events, as opposed to virtual events, the quality of the experience was not absent on anyone there. It felt good to be in the physical presence of one another. We sought and gained inspiration and enthusiasm and we do so with clear cognizance of COVID-19 as a risk. If advocates and our partners can continue to similar efforts that both keep us safe and connected, the future (not without its challenges) is bright, equity-focused, empathic, and patient-driven.

A Call to Action: HIV Advocacy Must Affirm the Human Rights of Transgender People

The Community Access National Network (CANN) recently announced a campaign designed to promote transgender leadership in HIV advocacy. The campaign’s foundation is centered on a Values Statement on Affirming the Human Rights of Transgender People. Why?

Last year, after Terrence Higgins Trust of the United Kingdom united HIV advocacy and service organizations in providing a statement of support of the human rights of transgender people, William Arnold asked me, “Has anything like this been done here?” My answer was frank, “not precisely.” I explained what typically happens is HIV advocacy and service organizations issue statements of support independently of one another but often tend to lack defined actions, policy goals, or a commitment to more than words. Perhaps there’s programming our partners have but they’re often managed by cisgender peers or don’t speak to the actual needs of transgender people. Similarly, if they are grant-making entities, funding awards are often given to large umbrella organizations rather than smaller by/for organizations. This comes at the detriment of a diversified brain trust, unique employment offerings tailored to trans communities, and consolidates services and power outside of the reach of transgender communities…or at least, outside of our trust. Our power is often undercut because it is just easier to give funding to larger umbrella organizations.

“We should do something about that,” Bill told me. He always had the vision to understand that we cannot solve the health disparities in HIV without addressing the holistic needs of communities living with these disparities.

As 2022 politics offer this country a horrific but robust “trans panic 2.0” by way of more than 280 proposed pieces of state legislation and policy attacks, which often garner much less attention and have fewer remedies than campaigning against legislation or law suits, now is the time for HIV advocacy organizations, service providers, and funders to commit themselves to defending and advancing the human rights of transgender people.

A cornerstone of Bill’s personal mission was ensuring access to life saving medications for everyone who needed them. Such a mission is centered in a sense of justice and, frankly, love. It’s a mission, ultimately that all HIV advocacy, service organizations, and funders share. To that end, I need to be clear and to state that under no uncertain circumstances, gender affirming care is lifesaving care. Indeed, gender affirming care improves the HIV-related health outcomes of transgender people. In order to End the HIV Epidemic, in order to fulfill the promises many of us have made to our predecessors, our families, our loved ones lost in the fight against HIV… in order to fulfill our sacred promises, we must affirm and defend the human rights of transgender people in all aspects of life. We must do so in concert, in a fashion coordinated to support existing services and advocacy dedicated to transgender people and communities. We must do so with a unified and collaborative voice that uplifts, empowers, and invests in transgender people, communities, leadership, and rights.

On the issue of the human rights of transgender people, we can no longer act independently of one another or divorced from the transgender advocates already dedicated to this space. In order to act with the integrity this moment and movement needs, our partners must also commit to living the principles reflective of these human rights. Our houses must be in order as it were. In order to End the HIV Epidemic.

We are calling on all our partners to join us in support of affirming the human rights of transgender and gender diverse communities, to commit to the development of transgender leadership within our organizations and empower the self-determination necessary to End the HIV Epidemic.

Nonprofit organizations, community partners, and industry partners interested in lending their support to CANN’s campaign to promote transgender leadership in HIV advocacy, go to https://www.surveymonkey.com/r/XT8LCN7.

Reducing Medication Abandonment; Improving Retention in Care

In early 2021, Riley Johnson, the community co-chair for Florida’s Comprehensive Planning Network, and Kim Molnar, the Director of The AIDS Institute’s Center for Convening and Planning, reached out to me to discuss a more and more pressing issue the state’s pharmacies were noticing: medications patients weren’t picking up. Their primary concern was understanding the scope of the problem and developing interventions appropriate to ensure the state’s Ryan White clients were getting the medications they needed. How does this problem fit into the state’s Integrated Plan and Ending the HIV Epidemic efforts?

The question of scope is one highlighted in a recent report from the trade organization known as PhRMA (Pharmaceutical Research and Manufacturers of America). The report focuses on how medication abandonment is a symptom and measure of health equity (or inequity, as is the case). Comparing the rise in high cost-sharing commercial insurance plans and medication abandonment from between 2016 and 2020, there’s a clear association. Not only did medication cost-sharing increase on new brand name medications, the out-of-pocket costs of many existing brand name medications increased and with those rises in costs came a rise in medication abandonment.

Insurers set the prices end-user patients have to pay at the pharmacy counter and increasing these costs effectively allow for these payers to defer expenses on care. When out-of-pocket costs reached $125 at the pharmacy counter, medication abandonment increased from 40% in 2016 to 58% in 2020. Across all prescriptions, medication abandonment only rose by 4% for the same timeframe, from 10% to 14%. It’s important to note these high cost-sharing medication because they’re often those assigned to chronic conditions, like diabetes, HIV, and hypertension, in which generic options aren’t’ as effective, have difficult to manage side effects, or aren’t even available. Indeed, our providers prescribe particular medications because those medications are appropriate to our individual and personal care.

Digging in further, PhRMA recognized an immediate disparity in who was not picking up their medications. On average, Black patients were 7% more likely to abandon new medications than their white peers. The disparity was particularly high among patients seeking pre-exposure prophylaxis for the prevention of HIV (PrEP) with Black patients 41% more likely to abandon a new fill compared to their white counterparts. Similarly, when a medication’s out-of-pocket cost rose to $125 per fill, PrEP again out paced other medication classes with a 34% disparity between Black and white patients. On the issue of income, between patients who earn less than $50,000 per year (lower-income) and those earning more than $100,000 per year (high-income), lower-income patients were 16% more likely to abandon their medications compared to their high-income peers, in an overall analysis.

PhRMA offers a few policy solutions to help overcome the cost-at-the-counter barrier; 1. Sharing the rebate and discount savings offered to pharmacy benefit managers and health insurers by manufacturers directly with the patients, 2. Covering particular medications from “day one” of benefits, rather than requiring a separate pharmacy benefit deductible to paid first, and 3. Ensuring all value of manufacturer patient assistance programs be credited toward patient deductibles, copays, and out-of-pocket maximums. The report also urges investment in better understanding the root causes of medication abandonment, as one of the limitations of the review includes not being able to account for factors like stigma, the effects of racism, education, or other social determinants of health.

In even this brief, yet national, review of medication abandonment, the necessity of intervention is obvious. That last bit, accurately understanding the “why” and offering an opportunity to intervene is exactly why Louisiana’s Ending the HIV Epidemic plan includes improving data sharing agreements and aims to reach beyond Ryan White funded entities to include the state’s Medicaid program and encourages appropriate coordination for the benefit of patients who need some extra help. When a patient has failed to pick up a medication, it’s the first sign a patient may not yet be ready to start a particular therapy or other barriers to care are pressing enough they’re prime to drop out of care. Improving retention in care by utilizing real-time data or software tools to notify an interventionist, be they case managers or peers, when a patient is struggling to pick up their medications would allow for programs to reach-out, identify the particular barrier a patient may be struggling with and empower or assist them in navigating that barrier. Data collected from these engagements is critical to better understanding and actively quantifying various barriers to care and better targeting individual and community wide interventions.

Medication abandonment is but one issue in which creative solutions, better data sharing while appropriately protecting patient data, and thoughtful considerations from the patient perspective can drive meaningful change.

Global & National Perspectives on HIV & HCV Co-Infection

On April 26, UNAIDS issued a report briefly detailing the state of HIV and Hepatitis deaths, globally, taking particular note of the issue of coinfection among people who inject drugs. Here in the United States, multiple jurisdictions have declared new HIV and ongoing Hepatitis C outbreaks, all combined with a surge in overdose deaths.

Domestically, federal public health initiatives have long sought to understand and address intersections of these issues, offer guidance, and shifted – albeit slowly – to understand HIV, HCV, and SUD exist as syndemics. And I want to talk about this language.

Syndemic, in general, means two or more linked health problems, interacting synergistically, and contributing to the disease burden of a given population; operating in a fashion that feed one another. To prevent or treat a syndemic, entities must not only treat each health problem but also the social ills that bridge these health problems.

This distinction is important – if we are to meet any of our public health goals on any of these, we need expertise, advocates, and structural support that both address the singular nature of each and the intersections, un-siloed from one another. Unique expertise in designing solutions is as valuable and necessary as expertise with the vision to see the whole system.

As we move through the COVID-19 pandemic, well-publicized discussion on the conflicts between national strategies and local actions mirrors fights patient and policy advocates have been fighting for four decades and continue to fight today. Even as we’ve made progress in ensuring direct acting agents (DAAs) are included in AIDS Drug Assistance Program (ADAP) formularies, at least one state has set an unchallenged precedent of denying this basic care to incarcerated people based on budgets and the Democratic mayor of the city with the “most concerning” HIV outbreak in the nation has back tracked on commitments to work with local public health experts.

This quarter’s HIV-HCV Coinfection Watch Report highlights some progress in syndemic-oriented policy changes and some more…unfortunate changes. While the American Rescue Plan, passed earlier this year, provides for more funding to address state budgets harmed by COVID-19 related revenue decreases, a few states have instituted – and currently maintain – restricted services. For example, while Georgia’s ADAP maintains DAAs on the formulary, payment for same is halted due to funding and Texas’s ADAP has removed all HCV medications, except one DAA from the formulary. Positive notes from earlier this year include Kentucky’s Medicaid program moving to a universal preferred drug list (PDL).

Of the space that has the greatest amount of room to progress and needing nuanced advocacy changes is harm reduction policies. Well-established federal policy and laws only reach so far if state and local laws act in direct opposition to those model positions or even merely lack the funding to establish comprehensive programs. One such space is the near universal adoption of “Good Samaritan Laws”, wherein, generally speaking, if a person, regardless of capacity, does their level best to help another, they cannot be held liable. However, several states have amended their “Good Samaritan Laws” or criminal codes to remove that liability protection from people who distribute illicit substances – disincentivizing reporting of overdose incidents and calling for medical help as they happen. Along the same lines, doctor shopping laws are aimed at preventing patients from seeking multiple prescriptions or seeking multiple providers if one is unsatisfied with their care. However, many states rely upon “lock-out” programs administered by insurance providers or managed care plans to implement under the guise of preventing “drug seeking behavior”. As Alison Gaye stated in a recent presentation to Louisiana’s Commission on HIV, AIDS, and Hepatitis C Education, Prevention, and Treatment, “drug seeking behavior often looks like care seeking behavior, subject to the personal biases of the examining provider”.

Harm reduction policies are in dire need to evolve and delve into the difficult nuanced spaces currently unaddressed if we’re to meaningfully work to end the syndemics of HIV and HCV. Far, far too often the solution found by policy makers in addressing public health needs has been to incarcerate those among us who need help. Driven by stigma, whether the issue is HIV criminalization or lack of access to standard HCV care or refusing adequate insurance coverage for recovery programs, shoving people into prisons has not served this country well on any front.

As we step into the next phase of our advocacy, evaluating existing programs, practices, and priorities cannot include a carceral mindset if we are to effectively reduce the harm caused by these syndemics and our past policies.

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.

Highlights from the Viral Hepatitis National Strategic Plan

On January 7th, the Department of Health and Human Services announced publication of an updated plan to eliminate viral hepatitis in the United States.  This “roadmap” coincides with HHS’s release of the first Sexual Transmitted Infections (STI) National Strategic Plan on December 18th, 2020, and an update to the HIV National Strategic Plan on January 15th, 2021.

Notably, these documents reference one another and specifically call for integrated efforts to tackle these syndemics across stakeholder groups, specifically including substance use-disorder as part of a “holistic” cohort. Additionally, each contains a near identical vision statement:

- The United States will be a place where new viral hepatitis infections are prevented, every person  knows their status, and every person with viral hepatitis has high-quality health care and treatment and lives free from stigma and discrimination.

- The United States will be a place where new HIV infections are prevented, every person knows their status, and every person with HIV has high-quality care and treatment and lives free from stigma and discrimination.

- The United States will be a place where sexually transmitted infections are prevented and where every person has high-quality STI prevention, care, and treatment while living free from stigma and discrimination.

All three vision statements end with the following: This vision includes all people, regardless of age, sex, gender identity, sexual orientation, race, ethnicity, religion, disability, geographic location, or socioeconomic circumstance.

Each plan addresses a limited but indefinite list of social determinants of health such as socio-economic burdens impeding access to care, including racism, intimate partner violence (IPV), and stigma and acknowledges discrimination against sexual and gender minorities (SGM). COVID-19 is mentioned repeatedly as underscoring and providing a highlight to the United States’ excessive health disparities, giving a nod to the unfortunate…”opportunity” the pandemic has provided health care advocates working with or as a part of these highly affected, highly marginalized communities. “The pandemic has exacerbated existing challenges in the nation’s public health care system, further exposing decades, if not centuries, of health inequities and its impact on social determinants of health.” Plans also acknowledge personnel and resources from programs addressing STIs, viral hepatitis, and HIV have been heavily redirected toward efforts to address COVID-19.

All plans call for better data sharing across providers and reporting agencies and an increase in surveillance activities, with an emphasis on local-level efforts to rely on local data, rather than national-level trends. Each plan also calls for expanded testing, interventions, linkage to care, provider and community education, and access to treatment, including incarcerated populations. The Viral Hepatitis National Strategic Plan (VHNSP) described “poor quality and a paucity of data” as clear impediment to meeting the goals of the plan. Sparring no stakeholder with access, the plan highlights a need for data sharing among correctional programs, health insurers, public and private health systems, mental and behavioral health, public health entities, and more.

The VHNSP also acknowledges opportunities to take lessons from the fight against HIV and the need to integrate “treatment as prevention” as a powerful tool in combating new HBV and HCV infections.

The Viral Hepatitis Strategy National Plans notes the following key indicators:

• On track for 2020 targets:

  • HBV deaths

  • HCV deaths

  • HCV deaths among Black People

• Trending in the right direction:

  • HBV vaccine birth dose (87% for people born between 2015-2016 by 13 months, WHO recommends 90% by 13 months)

  • HBV vaccine among health care personnel

  • HBV-related deaths among Black people

  • HBV-related deaths among people over the age of 45

• Not on track:

  • New HBV infections

  • New HCV infections

  • New HBV infections among people 30-49 years of age

  • HBV-related deaths among Asian Americans and Pacific Islanders

  • New HCV infections among people of 20-39 years of age

  • New HCV infections among American Indians and Alaska Natives

The plan recognizes an 71% increase in HCV infections in reporting years 2014-2018 and points toward a strong data correlation between these new infections and the opioid epidemic, based on local area reporting data. Care related challenges include lack of personal status knowledge, perinatal transmission, and cost of curative treatment.

The plan states ideal engagement in various activities across an astoundingly broad scope of stakeholders including faith-based organizations for outreach and education, stigma and anti-bias training among all client-facing personnel, the opportunity to engage comprehensive syringe services programs as an outlet to provide HCV medication and more traditional services like referral for opioid-use disorder, educating providers and employers about federal protections for people with viral hepatitis, increasing awareness through school education programs – specifically culturally sensitive and age-appropriate sex education programs.

From issues of criminalization laws to lack of cohesive data collection, overall, the plan is very welcomed, comprehensive approach toward addressing viral hepatitis. With the STI and HIV plans mirroring very closely.

While the plans call stakeholders to address economic barriers to care and other social determinants of health, specifics are lacking. Stakeholders may wish to consider some of the priorities in the Biden administration’s public health approach including hiring from affected communities (including reducing or allowing alternative education requirements like live-experience or consideration of on-the-job training opportunities). These lofty goals may also require regulatory changes in order to implement and realize them fully (i.e. mechanisms incentivizing correctional facilities and the Veterans Administration to share data with local or state health departments and establish linkage to care programs). Private funders would be wise to take advantage of this opportunity and fund innovative, comprehensive pilot or demonstration projects. Advocates would be wise to leverage these documents when seeking state-level regulatory changes and advocating for federal funding and program design.

What a Narrowly Divided Senate Means for Health Policy

On January 5th, Reverend Raphael Warnock and Jon Ossoff defeated Senators Kelly Loeffler and David Perdue in the Georgia Senate run-off elections, respectively. Democrats narrowly winning both Georgia Senate seats also means Democrats have narrowly won the Senate, dividing seats 50-50 between members who caucus with Democrats and Republicans with Vice President-elect Harris empowered to cast any tie-breaking votes and handing the incoming Biden administration a unified government.

While those with lofty ambitions on policy and legislative issues are cheering, there’s good reason to consider the need for moderating what can be expected from the 117th Congress: Democrats aren’t always on agreement on major issues like direct payment amounts as part of COVID relief or Medicare For All. The Biden administration will likely need to rely heavily on the regulatory powers allowed to federal agencies – which makes the prospective appointment of Xavier Becerra to lead Health and Human Services make more sense than it perhaps did on the surface. After all, who appoints an attorney to lead a health care agency?

The Trump administration made dramatic regulatory moves with regard to health care, targeting non-discrimination rules in health care, the Affordable Care Act including attempting to get the legislation declared unconstitutional by the Supreme Court, drug pricing, and championed legislative changes eliminating individual mandate penalty. While a judge has already temporarily blocked Trumps’ effort to tie drug prices to that of other nations’ prices and the Supreme Court has given the green light to recently-revived Food and Drug Administration rules on abortion pill access, these issues are regulatory in nature. The Biden administration could simply choose not to defend these moves in court change these regulations. While state push back is likely, a lack of Congressional challenge against these moves may help smooth the way for institutional changes.

It’s largely expected that among Biden’s first moves regarding health care will include expanding COVID relief measures and vaccine distribution plans, rescind the Mexico City policy (also known as the “Global Gag Rule”), “expand[ing] access to high-quality health care for Lesbian, Gay, Biden, Transgender, and Queer+ individuals” (or moving quickly to rescind the “Provider Conscience” rule), and reversing the 23% rate cut to 340B entities. With the help of a unified House and Senate, among Biden’s first accomplishments may be a legislative “fix” to the Affordable Care Act challenge awaiting ruling from the Supreme Court. Other campaign promises from Biden include seeking legislation to end HIV criminalization and increasing research into harm reduction models, expanding syringe services programs, and substance treatment funding – an issue Biden has evolved on and largely due to bearing witness and supporting his son through.

Other moves to watch for:

Strengthening the Affordable Care Act:
                - A regulatory move recalculating and increasing subsidies for Marketplace plans
                - Restoring Marketplace Navigator funding
                - Returning the open enrollment period to 90 days
                - Rescinding a proposed rule on 1332 waivers allowing states to opt-out of the Marketplace
                - Changes to regulations regarding short-term policies and association health plans (including reduced allowable coverage periods and requiring coverage of pre-existing conditions, including pregnancies, HIV, HCV, and transgender identity among others)
                - Reduce documentation burden for subsidies and Special Enrollment Periods
                - Expand the definition of qualifying life events and rules regarding special enrollment periods
                - Enforce mental health and substance abuse coverage parity
Strengthening Medicaid:
                - Rescind, reject, and stop defending 1115 waivers seeking work requirements
                - Encourage 1115 waivers to include the impacts of increasing coverage
                - Revise increased eligibility verification for Medicaid
                - Encourage policies regarding presumptive eligibility outside of hospitalization and emergency situations
                - Review and revise reimbursement schedules for Rural Hospitals
LGBTQ Health Equity:
                - Issue guidance and seek funding to address mental health services and support staff in schools
                - Reinstitute and/or strengthen Obama era guidance regarding transgender students and Title IX protections
                - Revise and strengthen Affordable Care Act, Section 1557 non-discrimination rules protecting women, Lesbian, Gay, Bisexual, Transgender, and Queer people, and people living with pre-existing conditions like HIV or HCV (in which the Trump administration would allow payers and providers to refuse care
                - Rescind the Trump era ban on transgender people serving in the military
                - Reverse or rescind Trump era “religious conscience” applying to civil rights laws – use regulatory power to include Lesbian, Gay, Bisexual, Transgender, and Queer people in civil rights protections in health, housing, and labor
                - Expanding data collection policies to include sexual and gender identities

While some may view the heads of regulation making agencies as “unelected officials”, in many ways, who we elect to be the executive is very much choosing who leads the agencies that impact our lives on a daily basis. There is much work to do for the Biden administration on the regulatory front and unified, carefully crafted legislation speaking to these issues may well help cement these changes beyond political party ping pong.