Travis Manint - Advocate and Consultant Travis Manint - Advocate and Consultant

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.

Read More
Jonathan Sosa Jonathan Sosa

Grindr Launches At-Home STI Testing Initiative

In an approach to combat elevated sexually transmitted infection (STI) rates among gay, bi, trans and queer people, the social dating app Grindr rolled out a new initiative providing users the chance to order at-home STI testing kits. Ellen Jenne wrote about this very issue in a recent blog post highlighting the new service the app rolled out to address elevated rates of STI infections among gay and bisexual men who have sex with me (GBMSM) in London.

Grindr partnered with Prepster at The Love Tank to deliver this initiative. PrEPster is a program part of the broader ‘The Love Tank’ community organization, a not-for-profit community interest community (CIC) providing education and research to under-served communities. This trailblazing partnership is why the initiative of providing at-home STI testing kits to users of the Grindr app is now introduced in London.

Grindr writes that this initiative will not only help users obtain knowledge of their health status but also help the app serve as a role model for other social networking apps to also make an emphasis on sexual health matters.

The initiative has already been successful in other countries like Ireland, Georgia, New Zealand and the US. The rate of STI diagnosis among GBMSM in London is recorded to be 15 times higher compared to that of the general population. This statistic is a reason why the initiative has been introduced in London and Grindr also writes that these numbers represent true people with actual struggles relating to fear and discrimination.

In their Grindr Unwrapped for 2023, the app shared statistics about what city users explored the most to attempt a connection with another user and London ranked first. Although a statistic from the previous year, the city’s popularity for being searched the most in one year highlights the importance of introducing the initiative in London overall.

The at-home self-test kits address common fears around STI testing such as physical transportation, fear of judgment and limited clinic hours. The at-home self-test kits address physical transportation barriers in allowing users to test at the convenience of their own homes at any time and be free of any judgment they would otherwise face in a physical clinic location.

Additionally, Grindr promises to not share information it obtains from its users when collecting data to send the kits to users.

Here is how the free and confidential service works:

  • Access: Users access the service directly from their profile by clicking on the button “Free STI Kit”

  • Eligibility: After clicking the “Free STI Kit” button, users will be guided through the basic steps to confirm their eligibility for the free testing kit.

  • Privacy: Once confirmed, the kit will be discreetly delivered to the user’s address. Users can then collect their samples in the privacy of their own homes.

  • Return: After collecting samples, users can return the kit using the provided free postage.

  • Results: Within a couple of days of returning the kit, users receive their results via notifications through SHL’s secure platform.

  • Confidentiality: Throughout the entire process, from ordering to receiving results, users’ information remains strictly confidential and is never shared with Grindr.

This public health push from one of the world’s largest social dating apps provides clear access, guided steps and convenient knowledge of health status. Ordering an STI self-test kit to reduce common burdens faced from members of the GBMSM community will help individuals achieve peace of mind in their community in an attempt to lower the overall heightened STI rates among these individuals.

Read More
Travis Manint - Advocate and Consultant Travis Manint - Advocate and Consultant

Innovation as a Change Agent for Patients Leaving Incarceration

For Dontrace Young, leaving incarceration means stepping back into a world saturated with risk. Two of his cousins died from opioid overdoses in their early twenties, and drug use touches nearly every branch of his family tree. He knows the statistics – that the risk of a fatal overdose skyrockets in the weeks after leaving jail. But thanks to a program at the New Orleans jail, Dontrace is now equipped with Narcan and the knowledge to use it, skills that could save his life or the life of someone he loves. Dontrace’s story highlights a harsh truth: for many people leaving incarceration, access to healthcare is not a guarantee, and navigating a complex and often unwelcoming system can feel impossible. This challenge is not unique to those involved with the justice system.

Across the United States, systemic inequities create significant barriers to healthcare access, disproportionately impacting communities of color and those living in poverty. In rural areas, lack of insurance further exacerbates healthcare disparities. While technological innovation promises to revolutionize healthcare, these advancements often fail to reach the margins, sometimes even widening existing gaps. As the Stanford Social Innovation Review notes, an over-reliance on technology without addressing systemic issues can actually worsen health disparities. However, two innovative programs – one in New Orleans and one in Connecticut – offer a different approach, demonstrating that achieving health equity requires meeting people where they are and addressing the social factors that influence well-being.

Overdose Prevention: Preparing for Reentry in New Orleans

Inside the walls of the Orleans Justice Center, a program spearheaded by Dr. Anjali Niyogi is working to equip people leaving incarceration with a life-saving tool: knowledge. Recognizing the heightened risk of overdose for those reentering society after time in the carceral system, Dr. Niyogi founded the Formerly Incarcerated Transitions (FIT) Clinic, a program that provides a bridge between incarceration and healthcare access. A core component of the FIT Clinic’s work involves regular visits to the jail, where a team led by Dr. Niyogi, and including formerly incarcerated community health workers Haki Sekou and Danielle Metz, provides overdose prevention training and distributes Narcan to those preparing for release. The need for such a program cannot be overstated. As a 2007 study in the New England Journal of Medicine revealed, the risk of overdose is 129 times higher for people in the weeks after they leave jail. Factors like reduced tolerance and the increasingly prevalent presence of fentanyl in the drug supply contribute to this alarming statistic. By providing education and resources within the jail setting, Dr. Niyogi aims to mitigate this risk and provide people with the tools they need to stay safe.

Central to the program’s success is the involvement of Sekou and Metz. Having both experienced incarceration themselves, they possess an intimate understanding of the challenges faced by those leaving the justice system. Their presence helps to break down barriers and build trust with a population often wary of traditional healthcare providers. As Sekou explains, “They think doctors are going to use them as a guinea pig. That’s one of the words they use commonly.” By offering a listening ear, sharing their own stories, and providing practical support, Sekou and Metz create a space where people feel seen, heard, and empowered to prioritize their health. For people like Dontrace Young, the FIT Clinic’s impact extends far beyond overdose prevention training. The program connected Dontrace with resources to address his mental health, offering a pathway to a healthier future. By building trust, providing essential knowledge, and fostering connections to ongoing care, the FIT Clinic exemplifies the power of meeting people where they are and addressing health needs within the broader context of their lives.

Healthcare on Wheels: Reaching the Underserved in Connecticut

Recognizing that access to healthcare extends far beyond the doctor’s office, a team at Yale University has launched a groundbreaking initiative: the nation’s first mobile pharmacy. Housed in a retrofitted Winnebago, this innovative program brings a full range of pharmacy services directly to communities facing significant barriers to care, including people experiencing homelessness, those with chronic illnesses, and people with substance use disorders. The mobile pharmacy, the brainchild of Dr. Sandra Springer, a specialist in HIV and addiction treatment at Yale Medical School, aims to bridge the gaps in traditional healthcare delivery. “If we’re going to provide health care and you’re going to provide medication, you better be able to provide that medication,” asserts Dr. Springer. “We should be trying to help people get those services.” The mobile unit, staffed by a team of pharmacists and healthcare providers, travels to locations such as homeless encampments, food pantries, and community clinics, ensuring that essential medications and healthcare services are available to those who need them most.

This innovative approach tackles multiple barriers to care simultaneously. For those without reliable transportation, the mobile pharmacy eliminates a significant hurdle. For people experiencing homelessness, who may feel stigmatized or unwelcome in traditional healthcare settings, the mobile unit offers a safe and accessible alternative. And for those struggling with chronic conditions, the mobile pharmacy provides consistent access to medications and support, reducing the likelihood of complications and hospitalizations.

The mobile pharmacy’s impact extends far beyond simply filling prescriptions. The team provides a range of services, including chronic disease management for conditions like diabetes and hypertension, wound care for those struggling with infections or injuries, and connections to mental health and addiction treatment resources. Jillian Corbin, executive director of the St. Vincent de Paul Place daytime shelter in Norwich, where the mobile pharmacy has become a lifeline for many, attests to its transformative impact: “When the staff from the pharmacy van first arrived in February, the impact to the community was immediate and life-changing.” By meeting diverse needs with compassion and expertise, Yale’s mobile pharmacy serves as a powerful model for how to bring healthcare directly to those who are too often left behind.

Redefining Innovation: Lessons from the Margins

The programs in New Orleans and Connecticut offer a powerful counter-narrative to the prevailing notion of healthcare innovation as synonymous with technological advancement. They illuminate a critical truth: true progress towards health equity requires a fundamental shift in how we define and approach innovation. As Infectious Diseases of Poverty asserts, “social innovation can best be understood as innovation in social relations, in power dynamics and in governance transformations, and may include institutional and systems transformations.” These programs are not simply delivering services; they are transforming systems by dismantling barriers, challenging assumptions, and centering the needs of those most often relegated to the margins. This requires a commitment to investing in what the Stanford Social Innovation Review calls “health-focused social innovations,” rather than solely prioritizing technology-driven solutions that may fail to address the root causes of health disparities, or make them worse.

What makes these programs so effective? They embody key principles of equitable innovation:

  • Community Engagement: Both programs prioritize the active involvement of their target populations. The FIT Clinic relies on formerly incarcerated community health workers who bring invaluable lived experience and trust to their work. Yale’s mobile pharmacy team collaborates with local organizations and community members to ensure their services are accessible and responsive to local needs.

  • Culturally Responsive Care: These programs recognize that healthcare is not one-size-fits-all. They approach each interaction with cultural sensitivity, understanding that historical trauma, systemic racism, and other forms of oppression profoundly impact health outcomes and shape people’s experiences with healthcare systems.

  • Trust and Relationships: Building authentic relationships based on trust and mutual respect is paramount. For those who have experienced stigma, discrimination, or mistreatment within healthcare settings, trust is not a given. Both programs address this by prioritizing empathy, transparency, and a genuine commitment to meeting people where they are, both physically and emotionally.

  • Addressing Social Determinants of Health: These programs understand that health outcomes are shaped by a complex interplay of social, economic, and environmental factors. By providing transportation, addressing food insecurity, and connecting patients to essential resources, they go beyond treating immediate medical needs and work to create conditions that support overall well-being.

The success of these programs is a call to action for all of us working towards a more just and equitable healthcare system. We must:

  • Support and invest in community-based programs: Funding should be directed towards initiatives that prioritize social innovation, community engagement, and culturally responsive care.

  • Shift funding priorities: While technology has a role to play, we must move away from an over-reliance on expensive technological solutions that often fail to reach those most in need.

  • Advocate for policy change: Systemic change requires advocating for policies that address the root causes of health disparities, such as poverty, discrimination, and lack of access to quality education and employment opportunities.

  • Amplify marginalized voices: Those most impacted by health inequities must be at the forefront of designing and implementing solutions. We must listen to, learn from, and follow the lead of those with lived experience.

By embracing a broader vision of healthcare innovation – one that centers equity, community, and the lived experiences of those most marginalized – we can begin to create a healthcare system that truly works for everyone.

Read More
Jen Laws, President & CEO Jen Laws, President & CEO

Institutional Barriers Still Stand in the Way to Equity

On July 28, 2022, the World Health Organization (WHO) released new guidelines on the use of long-acting, injectable cabotegravir (branded as Apretude) as pre-exposure prophylaxis (PrEP), just ahead of the 24th International AIDS Conference (AIDS2022) in Montreal. On the same day, ViiV Healthcare announced a voluntary licensing agreement with Medicines Patent Pool in an effort to extend access to the medication to middle- and low-income countries, particularly sub-Saharan African countries.

These are very exciting developments as the innovative products (Cabenuva for the treatment of HIV and Apretude for the prevention of HIV) represented the most recent of biomedical interventions around HIV with the potential for dramatic changes for the better. Expanding options, allowing for patients to choose between a daily tablet or once-every-two-months provider administered injection, gives patients the choice to pick between highly effective regimens to suit their comfort and lifestyles. While that may sound like a sales pitch for a phone, it’s not – it’s the effort to make life-saving medications appealing and easy. Frankly, they should be.

But in the long fight to make these medications available, we should be reminded that “available” and “accessible” are two, very different things. The difference is big – so big – that it can be measured in the 4,000 new diagnoses a day and 650,000 AIDS-related illness deaths in 2021.

That gulf, the pit in your stomach reading that data, the silence at the end of the hope and joy you had reading those first two paragraphs – that’s the space between “available” and “accessible”.

In order to fully appreciate the extraordinary efforts to improve living with and life for people living with HIV, we must also fully appreciate the barriers to care patients face every day. From housing to transportation to stigma to food – clean water and food – patients have consistently been blamed by policymakers, both foreign and domestic, for failing a moment in which patients aren’t the ones with institutional power to change the circumstances of their journey to care.

A large portion of AIDS2022 is dedicated to highlighting these disparities, the specific policy mechanisms countries should consider implement* in order to create a more equitable world for all and to ultimately End the HIV Pandemic. From discussing discordances in criminal laws and public health best practices (sex work, harm reduction) to practical investments in education and health care systems to very direct conversations on how political opportunism finds readiness in villainizing people and communities highly affected by HIV, the International AIDS Conference is a dedication in love, spanning thousands of years of lived experiences and expertise. The lessons learned from the collaborative and sometimes confrontational efforts highlighted at this event are lessons we ultimately should also appreciate here, in the United States.

At home, though, the disconnect between federal authorization of innovative medical products and state-based policies to ensure access is the representation of that engulfing silence from earlier. Patients, especially low-income patients, are still struggling to realize the benefits and flexibilities of the biomedical innovations. Medicaid programs were slow to appreciate the need to cover Cabenuva and Apretude (some still don’t). A national coverage determination has not yet been made to ensure Medicare patients have access. And even if every last corner of these public payers covered these medications, private payers still maintain the power over a patient’s choice by simply refusing to pay for them – instead forcing patients to suck up whatever the payer determines is acceptable.

Of all the systemic and institutional barriers to care patients face domestically, payers remain some of the least regulated, least accountable, and most profitable – of the top 12 most profitable companies in the US, 3 are or own pharmacy benefit managers. Food, housing, transportation all take many, many layers of work to dig into. But changing what patients pay at the pharmacy counter, relieving that stress and making patients less fearful of having to choose between those necessities and their medications? That takes one layer, one set of actors, to be held accountable to everyone who pays them to stay in business – including and especially the United States government. Advocates would do well, as federal legislators prepare to go elbow deep in “drug pricing” legislation, to readily ask “lower prices for whom?” The difference in the answers can be measured as the difference between “available” and “accessible.”

*The strikethrough and italics is the author’s commentary on language used by politicized entities to urge necessary policy changes.

Read More