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:
Epic Meaning & Calling: The belief that one is doing something greater than oneself.
Development & Accomplishment: The internal drive for making progress, developing skills, and eventually overcoming challenges.
Empowerment of Creativity & Feedback: Engaging users in a creative process where they have to repeatedly figure things out and try different combinations.
Ownership & Possession: Users are motivated because they feel ownership over something.
Social Influence & Relatedness: Activities driven by social elements, including mentorship, social acceptance, and competition.
Scarcity & Impatience: The desire to have something because it is rare or immediately unattainable.
Unpredictability & Curiosity: The drive stemming from not knowing what will happen next.
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.
Ensuring Equitable Access to PrEP for Minors in the South
In 2022, young people under 35 accounted for over half (56%) of all new HIV diagnoses in the United States. The Southern states bore a disproportionate burden of this epidemic, accounting for more than half of new HIV diagnoses that year. Particularly high rates among youth in this region highlight the urgent need for effective HIV prevention strategies tailored to young people. This alarming statistic underscores the urgent need to ensure that all young people, regardless of where they live or their family circumstances, have access to effective HIV prevention tools, including pre-exposure prophylaxis (PrEP). The CHOOSE study (Combatting HIV Or Other STIs Early), currently underway, offers a promising approach to increasing PrEP uptake among young gay, bisexual, and other men who have sex with men (YGBMSM) aged 13-24, a population at elevated risk for HIV. CHOOSE leverages the power of mobile health technology to provide tailored information, support, and reminders to help young people choose and adhere to PrEP.
However, the promise of CHOOSE and other similar PrEP initiatives for young people is threatened by a wave of restrictive policies and legal decisions in the United States, creating significant barriers for minors seeking to protect their health, especially those who live in the South. In Texas, the 5th Circuit Court of Appeals ruled that Title X-funded clinics must notify parents before providing sexual and reproductive healthcare services to minors, including contraception. This ruling has far-reaching implications for PrEP access, as Title X clinics are often the only source of sexual health services for young people, particularly those without access to private insurance. Similarly, in Tennessee, the state government's politically motivated decision to reject federal HIV prevention funding and redirect resources away from organizations serving marginalized communities, including those providing PrEP, further jeopardizes the health of young people.
These actions demonstrate a concerning trend of policies that prioritize parental control over the health and well-being of young people, even when those policies contradict evidence-based public health strategies and potentially put youth at risk. We must address these barriers to ensure that all young people in the South have equitable access to PrEP and other life-saving HIV prevention tools. Failing to do so will not only do material harm to vulnerable people but also hinder our collective progress towards ending the HIV epidemic.
The Landscape of PrEP Access for Minors
PrEP has proven highly effective in reducing the risk of HIV acquisition, particularly for young gay, bisexual, and other men who have sex with men. When taken as prescribed, PrEP can reduce the risk of sexual HIV transmission by up to 99%. Studies have shown that a majority of young people on PrEP demonstrate adequate adherence, further supporting its effectiveness as a prevention tool. However, realizing the full potential of PrEP for young people hinges on ensuring equitable access, a goal hindered by a complex and often restrictive legal landscape surrounding minors' consent to healthcare. While PrEP offers a powerful tool for HIV prevention, accessing this medication can be challenging for young people, particularly due to the complex legal landscape surrounding minor consent to healthcare.
The legal framework for minor consent to healthcare varies significantly across states, creating a patchwork of access for young people seeking PrEP and other sexual health services. Many state laws governing a minor's ability to give informed consent for STI and HIV services do not explicitly mention PrEP. This lack of clarity within these statutes leaves it unclear whether minors can consent to PrEP independently and confidentially. This ambiguity can deter healthcare providers from offering PrEP to minors and leave young people uncertain of their rights. The situation is particularly concerning in the South, where restrictive parental consent laws are prevalent and often extend to sexual and reproductive healthcare services more broadly.
The 5th Circuit ruling in Texas, requiring parental notification for Title X services, exemplifies this trend. Planned Parenthood, a leading provider of sexual and reproductive healthcare, condemned the ruling as "a significant and dangerous departure from decades of precedent that has allowed all young people to confidentially get basic health care like birth control through Title X." This ruling, and the legislation it protects, creates significant barriers for young people seeking basic sexual and reproductive healthcare, including PrEP. For example, a young person in Texas seeking PrEP who fears being outed to unsupportive parents due to their sexual orientation might forgo seeking this essential prevention method altogether to avoid mandatory parental notification, putting their health at risk. For those experiencing family conflict, abuse, or rejection due to their sexual orientation or gender identity, mandatory parental notification can be particularly dangerous, deterring them from seeking essential care.
However, recent actions by the federal government offer a glimmer of hope. In a case involving Oklahoma, the Supreme Court upheld the Biden administration's right to redirect federal family planning funds from states that restrict access to abortion information. This decision demonstrates the potential for using federal funding as leverage to incentivize states to comply with public health guidelines and protect access to care, even in politically charged areas like sexual and reproductive health.
Even in states where minors can legally consent to PrEP, confidentiality is not always guaranteed. Some states allow or require providers to notify parents or guardians, potentially compromising young people's privacy and putting them at risk. Additionally, the inadvertent disclosure of sensitive health information through insurance Explanation of Benefits (EOBs) sent to parents or guardians can further erode confidentiality. These policies fail to recognize the unique vulnerabilities of young people and the importance of confidential healthcare access in fostering trust and encouraging early intervention.
Political Interference: The Case of Tennessee
While restrictive laws present a significant barrier to PrEP access for minors, the case of Tennessee illustrates how political agendas can further undermine public health efforts, even in the absence of explicit legal restrictions. In 2023, the Tennessee government made the controversial decision to reject $6.2 million in annual funding from the Centers for Disease Control and Prevention (CDC) specifically designated for HIV treatment and prevention programs, including those supporting PrEP access. This decision, projected to result in 166 additional HIV transmissions and 190 additional deaths over 10 years, jeopardized years of progress in reducing new HIV diagnoses and expanding PrEP uptake in a state with one of the highest HIV burdens in the country.
This funding rejection was not driven by evidence-based public health priorities but rather by a politically motivated agenda to defund organizations like Planned Parenthood and shift resources away from communities deemed undesirable by those in power. The state government attempted to justify its actions by claiming a desire to prioritize other populations, such as first responders, but these groups have significantly lower HIV transmission rates, making this rationale dubious at best.
Following a public outcry and intense advocacy efforts by HIV organizations, the Tennessee legislature ultimately approved $9 million in state funding for HIV, and the CDC intervened by directly allocating $4 million to community-based organizations, resulting in a net increase in funding. While this outcome appears positive on the surface, the disruption caused by the initial funding rejection and the ongoing uncertainty surrounding the state's commitment to evidence-based HIV prevention strategies raise serious concerns.
The Tennessee case exemplifies the dangers of political interference in public health. The initial funding cuts disproportionately impacted marginalized communities, including young people, people of color, and LGBTQ+ people, who already face significant barriers to accessing healthcare. The attempt to redirect funding away from proven prevention strategies towards less vulnerable populations further demonstrates a disregard for health equity and the principles of evidence-based policymaking. This case also highlights the critical role of advocacy in holding policymakers accountable and protecting the health of vulnerable communities. The mobilization of HIV organizations and community members was essential in securing a partial reversal of the funding decision, demonstrating the power of collective action in challenging harmful policies.
The Promise of Telehealth and Other Innovative Solutions
As we grapple with the legal and political barriers hindering PrEP access for minors, it's important to explore innovative solutions that can circumvent these obstacles and reach young people where they are. Telehealth has emerged as a particularly promising approach, offering the potential to expand access, enhance confidentiality, and reduce stigma, especially in the South, where geographic barriers and social conservatism can be significant.
Studies have shown that telehealth interventions can effectively increase PrEP initiation among young people. For example, the PrEPTECH study demonstrated that a telehealth platform providing online education, home testing, and PrEP prescriptions significantly increased PrEP uptake among young men who have sex with men (MSM) and transgender women (TW) in Florida and California. Telehealth offers a convenient and discreet way for young people to access PrEP services, potentially overcoming logistical barriers and reducing the stigma associated with seeking sexual healthcare in person.
However, while telehealth holds promise, it's not a panacea. It's essential to recognize the limitations of telehealth and develop comprehensive strategies that address adherence challenges, digital equity, and the broader social determinants of health that can impact PrEP access and effectiveness. For example, young people may need additional support to adhere to daily PrEP regimens, and those without reliable internet access or digital literacy skills may face challenges navigating telehealth platforms.
Therefore, a multi-pronged approach is needed that combines telehealth with other innovative solutions tailored to the unique needs of young people. Youth-friendly clinics that prioritize confidentiality and provide non-judgmental care can create safe spaces for young people seeking sexual health services, including PrEP. Mobile testing units can bring PrEP services directly to communities with limited access to healthcare, and community-based outreach programs can raise awareness, reduce stigma, and connect young people to PrEP providers. By embracing a combination of strategies, we can create a more robust and equitable system for delivering PrEP to young people in the South.
Policy Recommendations and Call to Action
To truly protect future generations from the burden of HIV, we must move beyond simply acknowledging the barriers to PrEP access for minors in the South and embrace a proactive policy agenda that centers the needs of young people. This requires an approach that leverages our collective expertise and influence as advocates, healthcare professionals, and policymakers.
First, we must challenge the existing legal framework that hinders minor access to PrEP. Advocating for clear and consistent state laws explicitly granting minors the right to consent to PrEP confidentially is paramount. Removing ambiguity in statutory language and eliminating provider discretion will ensure legal clarity and empower young people to seek PrEP without fear of parental notification. Simultaneously, we must push for stronger confidentiality protections for all sexual and reproductive healthcare services for minors, recognizing the unique vulnerabilities and potential risks associated with mandatory parental notification.
Second, we must address the systemic inequities that disproportionately impact PrEP access for young people of color, LGBTQ+ people, and those living in rural communities. Adopting the PrEP Equity Ratio (PER) and other equity metrics as standard practice in program design and evaluation is necessary for monitoring progress and holding stakeholders accountable for achieving equitable PrEP access.
Third, we must actively engage in the political process to safeguard and increase federal funding for HIV prevention programs, particularly those targeting youth and communities of color. The Tennessee case exemplifies the vulnerability of public health funding to political interference. We must advocate for policies that protect these funding streams and ensure that resources are allocated based on epidemiological evidence and public health needs, not ideological agendas.
Finally, we must leverage the power of innovation to expand PrEP access and address the unique needs of young people. This includes supporting the expansion of telehealth services, promoting youth-friendly clinics, and investing in community-based outreach programs tailored to the specific challenges faced by young people in the South.
This is not a passive call to action; it is a call to mobilize our expertise, resources, and influence to create a policy environment that prioritizes the health and well-being of all young people. The time for bold action is now. Let us work together to ensure that no young person is denied the opportunity to protect themselves from HIV.
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.
HIV Advocates Gather in Nashville for Health Fireside Chat
From April 27th through 29th, ADAP Advocacy Association (aaa+) hosted its first Health Fireside Chat of the year. The series was rebranded to encompass a broader focus on public health, changing from the HIV/AIDS Fireside Chat to the Health Fireside Chat. Unlike previous Fireside Chats, Nashville’s event added an “ice breaker” activity, themed in light of the hosting city – a line dancing lesson, as well as a town hall meeting convened in partnership with Positively Aware. The additional half day of activities - including the ice breaker, townhall meeting, and meet and greet - allowed attendees to settle into conversation expediently after having a solid hour of good laughs, encouragement, and bonding. Once down to business, policy discussions focused on Tennessee’s politically-motivated decision to decline HIV prevention funding, reforming the 340B Drug Discount Program to better meet patient needs, and the intersection between U=U (undetectable equals untransmittable) and reforming HIV criminalization laws.
The townhall meeting, which was facilitated by Rick Guasco, Acting Editor-in-Chief of Positively Aware, started with recognition that Nashville was explicitly chosen as a hosting city due to the state of Tennessee’s rejection of federal HIV prevention dollars. While a later discussion was specific to that issue, the town hall dug into underlying (and broader) concerns around systemic discrimination as a driver of today’s HIV epidemic. Digging into how racism, as an example, manifests can be a touchy subject in any group, even among those who generally align. Such a charged set of topics, especially among HIV’s thought-leadership, can and does lead to transformational moments, particularly because creating a space of “internal” advocacy provides a chance for us to experience, and navigate, conflict amongst ourselves. That conflict and navigation also provides us a chance to grow together and to break down silos of interest, work, and thought. And this townhall did exactly that.
The first policy session, “Tension in Tennessee: Is an HIV Access to Care & Treatment Crisis Looming?”, lead by the O’Neill Institute’s Jeff Crowley, invited local advocates to discuss their internal view of Tennessee’s “troubles” with some national advocacy representation. While much of the discussion focused on the details of local communication and national assumptions, some discussion on how the state may implement its newly allocated funding (will the state’s budget continue to fund prevention efforts next year?), much of the conversation that followed was explicitly about how local advocates can communicate and collaborate with national advocacy efforts. What became clear from that conversation is much of the national and state level advocacy we tend to reflect fondly of when speaking on decades past is relatively fragile and not well-coordinated. Planning bodies have diminished to largely being provider groups and some don’t even meet – despite a statutory requirement to do exist. An attendee with capacity building expertise pointed out the need for investment in this space. Many planning bodies have been weakened by atrophy, others have faced a demographic shift (and as a result a change in the barriers and assistance needed in order to appropriately activate affected community). The discussion as a whole highlighted the extreme silos working against a cohesive and collaborative advocacy network necessary to support ending the HIV epidemic.
340B remains an important issue for HIV advocates. As such, “340B Drug Discount Program: The Issues Spurring Discussion, Stakeholder Stances, and Possible Resolutions?“ was the focus of the second policy session. Some of the advocates in attendance knew little about the program, so the discussion provided an excellent educational opportunity on how the discount drug program works. Laser focused on issues of health equity, Kassy Perry of Perry Communications Group lead the group to dig in – and quickly. Advocates less familiar with 340B were readily able to identify the need for reform when assessing reductions in charity care and increases in medical debt. The group readily recognized 340B as a powerful tool toward addressing health disparities, especially economic consequences for patients, and where those consequences can and do negatively impact entire areas of patients’ lives. Attendees from industry partners listened intently as advocates described their concerns and the need for the program to better reflect the intent in which it was established.
Day two concluded with attendees enjoying a meal with one another, and a round of singing “happy birthday” to Brandon M. Macsata, the ADAP Advocacy Association’s CEO, who turned 50. This was truly a moment (many of them really) in which attendees got to buy into my desire to ensure our colleague felt loved and celebrated, since we were all together. All told, it is very likely Brandon heard the song “happy birthday” some two dozen times or more throughout the event (and I sincerely encourage ya’ll to do so again, if you find yourself in a meeting with him during the month of May).
The final policy session, “U=U: Is 'Undetectable Equals Untransmittable' Changing the Landscape for HIV Criminalization Laws?“, focused on the intersection of issues between U=U and reforming HIV Criminalization Laws with the conversation hosted by Mandisa Moore-O’Neal, executive director of the Center for HIV Law and Policy, and Murray Penner, executive director of U=U Plus. Mandisa shared with the group the exceptional nature of HIV criminalization laws, but also how general criminal codes are out of date, furthering the HIV epidemic, and nearly exclusively used against Black and Brown people living with HIV. Mandisa also discussed how these laws can and are leveraged to further domestic violence (and coercive control). Murray then discussed how laws which allow for “affirmative defenses” only help those people living with HIV which can readily access and maintain care. All of which emphasized that the design of these laws assume that because someone is living with HIV, they are necessarily presumed “guilty”. Advocates discussed how to break silos, including the potential to partner in prosecutor and public defender education efforts. Advocates focused on health or with strong relationships with their local health departments, for example, might wish to participate in education efforts alongside legal advocacy organizations or a state Bar.
The Health Fireside Chat series remain an exceptional retreat to advance thought-leadership, deep-dive policy conversations, as well as often-under appreciated advocacy collaboration. The ADAP Advocacy Association plans to host additional Health Fireside Chats later this year in Philadelphia, PA, and New Orleans, LA.
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.