Dismantling of Health Equity Research

A federal judge has ordered the Trump Administration to restore thousands of public health websites and datasets that were abruptly taken offline January 31, 2025. But the ruling, while important, addresses only the most visible aspect of a deeper transformation taking place in American public health research.

The order requires immediate restoration of critical resources like the Centers for Disease Control and Prevention’s (CDC) Youth Risk Behavior Survey, which has tracked adolescent health trends for over 30 years, and AtlasPlus, which provides essential HIV surveillance data. Yet even as some datasets begin to return, fundamental questions remain about their integrity and future usefulness.

New restrictions on research language and funding are reshaping how health disparities can be studied, documented, and addressed. At the National Science Foundation (NSF), grant proposals are now screened for over 70 terms related to equity and inclusion. Similar constraints are being implemented across federal health agencies, controlling not just what data exists, but how it can be analyzed and applied.

We've seen this strategy before. For over 20 years, the Dickey Amendment effectively halted federal research on gun violence - not through outright prohibition, but by using funding restrictions to make the research politically toxic. Today's policies follow the same playbook, using indirect means to reshape what questions researchers can ask and what problems they can study.

The implications for public health - and patient care - could echo for decades to come.

The Architecture of Erasure

The Trump administration's data purge made headlines, but the less visible transformation of research funding mechanisms will have far greater long-term impact. Under new NSF guidelines, grant proposals containing terms like "health disparities," "barriers to care," or "systemic inequities" trigger automatic review. These aren't outright bans - they're strategic barriers designed to make certain types of research more difficult to fund and publish.

Similar restrictions are being implemented across federal health agencies. The National Institutes of Health (NIH) and CDC must now screen research proposals for language that could be interpreted as promoting "gender ideology" or diversity initiatives. Even if researchers secure funding, their ability to frame findings around equity and access faces new constraints.

This reshapes research at every level. A study on maternal health outcomes might be funded if it focuses on individual behaviors, but not if it examines how systemic barriers affect Black maternal mortality. Mental health research could explore "personal resilience" but not structural obstacles to care access. Over time, these restrictions don't just limit what can be studied - they fundamentally alter how health challenges are understood and addressed.

The mechanism is subtle but effective. When researchers know their work will be flagged for examining disparities or structural inequities, many will self-censor to protect their funding. As one CDC scientist told Science magazine, "No federal employee was willing to risk his or her career or the agency's funding to find out" exactly where the new boundaries lie. This kind of suppression doesn't require explicit bans - just the implicit threat of losing resources.

For health systems dependent on federal grants, these restrictions create impossible choices. How can a hospital justify funding for language access programs if they can't document disparities in care? How can public health departments address racial gaps in health outcomes if they can't name those gaps in their grant applications? The system is being redesigned not just to ignore inequity, but to make studying it professionally toxic.

Learning from History: The Dickey Amendment's Legacy

The strategic use of funding restrictions to suppress research isn't new. In 1996, Congress passed the Dickey Amendment, which prohibited the CDC from using funds to "advocate or promote gun control." While this didn't explicitly ban gun violence research, Congress simultaneously slashed CDC's budget by the exact amount previously spent studying firearms - sending an unmistakable message about the political cost of pursuing such research.

The impact was immediate and long-lasting. For over 20 years, federal agencies avoided gun violence research entirely, creating a massive knowledge gap during a period when America's gun violence epidemic dramatically worsened. Even former Representative Jay Dickey, the amendment's author, later expressed regret, stating "I wish I had not been so reactionary."

When Congress finally restored partial funding in 2020, the research community's response was dramatic. The CDC and NIH awarded $149.5 million for firearms research from 2020-2022, leading to a 90% increase in clinical trials and an 86% increase in research publications. But two decades of lost research had already shaped a generation of health policy - or rather, the lack thereof.

Today's restrictions on health equity research follow a similar pattern. While the court has ordered data restoration, new language restrictions and funding mechanisms create powerful disincentives for studying health disparities. Like the Dickey Amendment, these policies don't need to explicitly ban research - they just need to make it politically and professionally risky enough that researchers and institutions avoid it altogether.

The parallels are striking: both policies use indirect means to achieve political goals, both rely on funding threats rather than outright bans, and both are likely to create long-term gaps in critical public health knowledge. However, today's restrictions on health equity research have potentially broader implications - they affect how we understand and address disparities across our entire healthcare system. The knowledge gaps we create today could take decades to fill, leaving us unable to effectively study or address systemic barriers to care.

Beyond Data: How Research Shapes Care

What happens when we can't study disparities in healthcare? The impact cascades through the entire system - from how research is funded, to who is selected for clinical trials, to what guidelines are written, to how providers make decisions, and ultimately, to whether patients receive appropriate care.

Consider HIV surveillance and prevention. The CDC's AtlasPlus tool wasn't just a database - it was the primary mechanism for tracking outbreaks and targeting prevention resources where they were needed most. Without this real-time mapping capability, public health officials lose their ability to respond quickly to emerging hotspots or evaluate which interventions are working. This particularly impacts PrEP outreach in Black and Latino communities, where research has shown targeted, culturally-responsive programs are most effective.

The restrictions on studying maternal health disparities are equally concerning. We know that Black women are three times more likely to die from pregnancy-related causes than white women. But without the ability to study why these deaths occur or evaluate which interventions help, maternal mortality review committees cannot make evidence-based recommendations for prevention. The data might show us who is dying, but research restrictions mean we can't effectively study how to save them.

Language access in healthcare settings presents another critical challenge. When 60% of healthcare workers report witnessing discrimination against non-English speakers, we need research to understand where translation services are most urgently needed and which interpretation models work best. But with terms like "culturally responsive" now flagged in federal grant proposals, who will study these issues? How will hospitals justify funding for language access programs if they can't document their impact?

jThe Youth Risk Behavior Survey's 30-year dataset on adolescent mental health has been essential for developing school-based interventions and suicide prevention strategies. Even if this data is restored, new restrictions on studying LGBTQ+ youth mental health could leave healthcare providers unable to identify which prevention strategies actually work for this high-risk population.

These aren't just academic concerns. When research is restricted, health systems lose their ability to identify problems, evaluate solutions, and implement evidence-based changes. The result? Providers make decisions without complete information, institutions lack data to justify needed programs, and patients - especially those already facing systemic barriers - suffer the consequences.

The Road Ahead

Despite the federal court order to restore health agency websites, serious questions remain about both compliance and data integrity. While some datasets have returned online, many lack essential documentation needed for analysis. The administration's response has been defiant, with Vice President Vance suggesting that "judges aren't allowed to control the executive's legitimate power."

Even if full compliance is achieved, researchers face a transformed landscape across all federal agencies. Under new government-wide directives, research proposals at the NSF, NIH, CDC, and other federal agencies must undergo scrutiny for language related to diversity, equity, inclusion, and accessibility (DEI/A). The impact extends far beyond health research - with similar restrictions at the Departments of Education, Housing and Urban Development, and other federal agencies, our ability to study and address systemic inequities across all social determinants of health is severely compromised.

The impacts extend beyond federal agencies. State health departments and research institutions rely on federal frameworks for standardization and analysis. When these systems are dismantled or restricted, it affects health surveillance and research at every level. Hospitals and clinics dependent on federal grants must align their programs with new guidelines or risk losing funding - even if that means ignoring documented disparities in their communities.

For patients, especially those already facing barriers to care, these changes could have profound consequences that don’t stay in academic journals. They play out in hospitals, emergency rooms, and community health clinics—in real people’s lives. They determine who gets care, who gets ignored, and who is left to suffer without accountability. For people living with HIV—particularly transgender women of color, who already face some of the highest levels of stigma and systemic barriers to care—these policies do more than entrench existing inequities. They manufacture new ones.

This is the reality we face: a healthcare system where evidence of disparities exists but cannot be named, where inequities persist but cannot be studied, and where patients suffer but their experiences cannot be documented in ways that drive change. In this climate, who will take the risk of researching these disparities at all?

Conclusion

These restrictions are not just an attack on data collection—they are an attack on the ability of marginalized communities to fight for their own survival. The ability to name a problem, to document its scope, to prove its harm—this is what drives change in public health. Put another way, it is a deliberate strategy to strip communities of the proof they need to demand better.

The Dickey Amendment's legacy shows us how research censorship can shape public health outcomes for generations. Twenty years of suppressed gun violence research contributed to policies based on politics rather than evidence and led to the worst gun violence epidemic of any developed country. Today's restrictions on health equity research risk creating similar knowledge gaps across every aspect of our healthcare system.

Research doesn't just generate statistics - it provides the evidence needed to develop effective interventions and drive meaningful change. Without the ability to study health disparities or document systemic barriers to care, healthcare providers lose essential tools for improving patient outcomes. When we can no longer collect data showing where problems exist or evaluate which solutions work, we risk perpetuating preventable suffering in communities that already face the greatest challenges accessing care.

The restoration of federal health websites is an important first step. But unless we also protect researchers' ability to study disparities, document inequities, and evaluate solutions, we risk creating gaps in public health knowledge that could take decades to fill. The consequences of these strategic policy decisions will be measured not just in datasets lost, but in human suffering and headstone counts.

Flying Blind: Public Health Without Population Data

On January 31, 2025, federal health agencies began removing thousands of webpages and datasets from public access in response to executive orders from the Trump Administration targeting "gender ideology" and diversity, equity, and inclusion initiatives. By February 1, over 8,000 federal webpages and 450 government domains had gone dark, including critical public health resources from the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), and Food and Drug Administration (FDA).

Immunologist and microbiologist Dr. Andrea Love, Executive Director of the American Lyme Disease Foundation, minced no words regarding the executive actions: "If you weren't clear: a President ordering a Federal health and disease agency to delete pages on its website is a public health crisis." The scope of removed content spans decades of population health data, from the 40-year-old Youth Risk Behavior Surveillance System to current HIV surveillance statistics. Many pages that have returned now display banners warning of further modifications, creating uncertainty around the future availability and integrity of federal health data.

This sudden removal of public health information echoes similar challenges faced during the early COVID-19 response, when limited access to comprehensive population data hampered the ability to identify and address emerging health disparities. As we examine the current situation, the key question becomes: How can evidence-based public health function without access to the very data that drives decision-making and ensures equitable health outcomes?

Scale of Impact

The removal of federal health datasets represents an unprecedented disruption to public health surveillance and research capabilities. According to KFF analysis, key resources taken offline include:

The CDC's Youth Risk Behavior Surveillance System, which for 40 years has tracked critical health indicators among high school students. This dataset has been instrumental in identifying emerging health crises, including the rise in youth mental health challenges and substance use patterns.

CDC's AtlasPlus tool, containing nearly 20 years of surveillance data for HIV, viral hepatitis, sexually transmitted infections, and tuberculosis, is no longer accessible. This platform has been essential for tracking disease trends and designing targeted prevention strategies.

The Social Vulnerability Index and Environmental Justice Index - critical tools for identifying communities at heightened risk during public health emergencies and environmental disasters - have also been removed. These resources help public health officials allocate resources effectively during crises and natural disasters.

Public health researchers report that the loss of demographic data collection and analysis capabilities particularly impacts their ability to identify and address health disparities.

As Dr. Jennifer Nuzzo, director of the Pandemic Center at Brown University School of Public Health notes, "Health equity is basically all of public health."

The ability to analyze health outcomes across different populations is fundamental to developing effective interventions and ensuring equitable access to care.

The CDC's healthcare provider resources have also been affected, including treatment guidelines for sexually transmitted infections and HIV prevention protocols. This loss of clinical guidance materials creates immediate challenges for healthcare providers working to deliver evidence-based care.

Beyond individual datasets, this wholesale removal of public health information disrupts the interconnected nature of federal health data systems. Many of these resources inform each other, creating compounding effects when multiple datasets become unavailable simultaneously.

Research and Care Delivery Impact

The removal of federal health data creates immediate challenges for both research and clinical care delivery. The Infectious Diseases Society of America (IDSA) warned that removing HIV and LGBTQ+ related resources from CDC websites "creates a dangerous gap in scientific information and data to monitor and respond to disease outbreaks."

This impact is particularly acute in STI prevention and treatment. Including gender and demographic data in research helps identify populations at elevated risk for infections like syphilis, which has reached its highest levels in 50 years. Without this data, developing targeted interventions becomes significantly more challenging.

For HIV prevention specifically, the loss of CDC's AtlasPlus tool removes access to critical surveillance data that guides prevention and treatment strategies. Healthcare providers report that missing CDC clinical guidance on HIV testing and PrEP prescribing creates uncertainty in delivering evidence-based care.

David Harvey, executive director of the National Coalition of STD Directors, emphasizes the immediate clinical impact: "Doctors in every community in America rely on the STI treatment guidelines to know what tests to run, to know what antibiotic will work on which infection, and how to avoid worsening antibiotic resistance. These are the guidelines for treating congenital syphilis, for preventing HIV from spreading, and for keeping regular people healthy every time they go to the doctor."

The loss of demographic data collection capabilities also threatens to undermine decades of progress in understanding and addressing health disparities. Research requiring analysis of health outcomes across different populations may face delays or compromised results without access to comprehensive federal datasets.

This disruption extends beyond immediate clinical care to impact long-term research projects and clinical trials. FDA guidance documents about ensuring diverse representation in clinical studies are no longer accessible, potentially affecting the development of new treatments and their applicability across different populations.

Historical Context and Implications

The current removal of federal health data follows concerning precedent. During the COVID-19 pandemic, similar actions to restrict access to public health data hampered effective response. In July 2020, hospital COVID-19 data reporting was moved from CDC control to a private contractor, leading to significant gaps in data access and accuracy that impeded pandemic response.

As Harvard epidemiologist Nancy Krieger notes, "There's been a history in this country recently of trying to make data disappear, as if that makes problems disappear... But the problems don't disappear, and the suffering gets worse."

This observation proved accurate during COVID-19, when limited access to comprehensive demographic data delayed recognition of disparate impacts on communities of color.

Early COVID-19 response efforts were hampered by insufficient data about how the virus affected different populations. This information gap contributed to delayed identification of emerging hotspots and slowed targeted intervention efforts. The result was preventable disparities in COVID-19 outcomes, particularly among Black, Hispanic, and Native American communities.

Today's wholesale removal of federal health data risks recreating similar blind spots across multiple public health challenges. Without demographic data to identify disparities and guide interventions, public health officials lose the ability to effectively target resources and measure outcomes. As Dr. Jennifer Nuzzo emphasizes, this data is "really important for us to answer the essential question of public health, which is, Who is being affected and how do we best target our limited resources?"

Legal Response and Policy Challenges

On February 4, 2025, Doctors for America filed suit against multiple federal agencies including the Office of Personnel Management (OPM), Centers for Disease Control and Prevention (CDC), Food and Drug Administration (FDA), and Department of Health and Human Services (HHS).

The lawsuit challenges two key actions: OPM's directive requiring agencies to remove webpages and datasets, and the subsequent removal of critical health information by CDC, FDA, and HHS. The complaint argues these actions violated both the Administrative Procedure Act and the Paperwork Reduction Act of 1995 (PRA).

Under the PRA, federal agencies must "ensure that the public has timely and equitable access to the agency's public information" and "provide adequate notice when initiating, substantially modifying, or terminating significant information dissemination products." The complaint alleges agencies failed to provide required notice before removing vital health information and datasets.

The legal challenge emphasizes the fundamental role these datasets play in public health. According to the filing, "The removal of the webpages and datasets creates a dangerous gap in the scientific data available to monitor and respond to disease outbreaks, deprives physicians of resources that guide clinical practice, and takes away key resources for communicating and engaging with patients."

Nine out of twelve public health researchers on CDC's advisory board signed a letter to the agency's acting director seeking explanation for the data removal. These scientists expect to face consequences for speaking out but emphasize the critical nature of maintaining public access to health data.

Data Preservation Efforts

As federal health datasets disappeared, researchers and institutions launched rapid preservation efforts. Harvard University organized its first "datathon" to archive website content through the Wayback Machine, while other academic institutions worked to preserve datasets locally.

The Kaiser Family Foundation reports having downloaded significant portions of CDC data prior to removal. While some CDC data files have been restored, they currently lack essential documentation like questionnaires and codebooks needed for analysis.

For healthcare providers needing immediate access to clinical guidelines, medical associations are working to provide archived copies of treatment protocols. The Infectious Disease Society of America and HIV Medicine Association are coordinating with members to ensure continued access to critical clinical resources.

State health departments maintain some parallel data collection systems that may help fill gaps in federal surveillance. However, these systems often rely on federal frameworks for standardization and analysis, potentially limiting their utility as standalone resources.

These preservation efforts, while necessary, cannot fully replace the coordinated federal data infrastructure needed for comprehensive public health surveillance and research.

Recommendations

Healthcare providers and public health officials should consider these immediate steps to ensure continued access to vital health information:

Data Access and Preservation

• Download and securely store copies of restored CDC datasets, including documentation

• Maintain offline copies of current clinical guidelines and protocols

• Establish relationships with academic institutions archiving federal health data

Alternative Data Sources

• Connect with state and local health departments to access regional surveillance data

• Utilize medical society and professional organization resources for clinical guidance

• Consider participating in alternative data collection networks being established by research institutions

Advocacy Actions

• Support ongoing legal efforts to restore data access

• Document specific impacts of data loss on care delivery and research

• Engage with professional organizations coordinating preservation efforts

Future Planning

• Develop contingency plans for maintaining essential health surveillance

• Build redundant data collection systems where feasible

• Strengthen partnerships with academic and nonprofit research organizations

These steps cannot fully replace federal health data infrastructure but may help maintain critical public health functions while broader access issues are resolved.

Combating Shame and Stigma in the Fight for LGBTQIA+ Health Equity

I’m writing this as we navigate another Pride Month, and as I reflect on the joy and resilience of our community, it’s impossible to ignore the ever-present weight of our collective trauma. Eight years ago, on a warm June night, our world shattered. The joyous celebration of Pride Month at Pulse Nightclub in Orlando transformed into a scene of unimaginable horror, the echoes of gunshots forever seared into our collective memory. Forty-nine souls, beautiful and full of promise, were tragically stolen from us, victims of a hate-fueled act of violence that shook the LGBTQIA+ community to its core. My own gay wedding was set to be held one week after the massacre. I remember all too well the conversations we had, the fear we held for our safety and the safety of our guests. The tears we shed as we stood up to the hate, held a moment of silence for our lost queer family, and recited our vows, in defiance.

We carry a legacy of loss within the queer community. The Pulse nightclub shooting is forever seared into our collective memory; a horrific reminder of the violence fueled by hatred and bigotry that continues to plague our society. We remember the 49 lives lost that night, and countless others targeted for simply daring to live their truths. We remember the generation decimated by HIV/AIDS, a generation denied care and compassion in its time of greatest need. We must never forget that we have always been marginalized, attacked, and killed simply for existing. Yet, even in the face of unimaginable grief and persistent oppression, we find the strength to rise. We draw strength from the legacy of those who came before us, those who fought tirelessly for a better world. Theirs is a legacy of resilience, of love, of unwavering pride that fuels our fight for a brighter future.

This fight, however, is far from over. This Pride Month, we are reminded that the struggle for LGBTQIA+ equality, a struggle deeply intertwined with the fight against HIV, is a marathon fueled by defiance. And they—those who seek to erase us, silence us, deny our humanity—are banking on our exhaustion. They are counting on us to falter, to grow weary, to surrender to the constant battle for our right to simply exist. Their weapon of choice? Shame, wielded through stigma.

Stigma is the weapon they wield, launching attacks of misinformation, fear, and prejudice. Shame is the wound that festers when those attacks land, making us doubt our worth, our identities, our right to exist. It’s the insidious force behind discriminatory legislation, the hateful rhetoric that paints us as dangerous or deviant. It's the fear that prevents someone from seeking an HIV test, the silence that keeps people from accessing life-saving treatment, the isolation that breeds despair. It’s the reason why, even in 2024, HIV continues to disproportionately impact marginalized communities, and why accessing quality, affirming healthcare can still feel like navigating a minefield for so many LGBTQIA+ people. Shame is what happens when we internalize that stigma; when we start to believe the lies that we are broken, unworthy, deserving of judgment and rejection.

And they know it.

We see their tactics everywhere we look. The relentless attacks on LGBTQIA+ rights, particularly the venomous campaign of hate targeting transgender and gender-nonconforming people, are designed to instill fear, to divide us, to make us question our worth. These attacks, often disguised as concerns about "parental rights" or "religious freedom," create a climate of intolerance that directly impacts healthcare access for the most vulnerable members of our community.

This politically-motivated hate manifests in insidious ways. We see it in the surge of anti-LGBTQ+ legislation sweeping the nation, legislation that seeks to control our bodies, our identities, our very right to exist. While we celebrate the small victories—the decrease in anti-LGBTQ+ bills passed this year, a testament to the power of our collective advocacy—we know that the 37 that passed are 37 too many. These bills, particularly those targeting transgender youth, represent a direct attack on the well-being of our community.

And the assault doesn't stop there. They try to control the narrative, to erase us from history, ban our stories, to keep lifesaving information out of the hands of our youth. Efforts to restrict comprehensive sex education in schools, to erase queer people from discussions about health and relationships, are a blatant attempt to perpetuate a cycle of stigma, shame, and silence.

But here's where our power lies: in pride. Not just the parades and parties—though those hold their own significance—but the deep, abiding pride that serves as the antidote to shame. The pride that is rooted in self-respect, in solidarity, in the unwavering belief that our lives, our loves, our identities are valid and worthy of celebration. This is the pride we carry in our hearts, the pride that fuels our resilience and fuels our fight for a better world.

This Pride Month, let us honor the memory of those we lost at Pulse and in the decades-long fight against HIV/AIDS by continuing their legacy of resistance and queer joy. Let us transform our grief and anger into action. Let us demand better from our elected officials, holding them accountable and demanding policies that prioritize public health over prejudice. Let us challenge discriminatory policies that restrict access to essential healthcare services, including HIV prevention, testing, and treatment. Let us advocate fiercely for comprehensive sex education that is inclusive of LGBTQIA+ experiences and identities.

Our fight is far from over, but we are strong. We are resilient. We are proud. And we will not be silenced.

New CDC Guidance Backs DoxyPEP Amid STI Surge, Political Controversy

The United States is grappling with a surge in sexually transmitted infections (STIs), with alarming increases in syphilis, gonorrhea, and chlamydia. According to the Centers for Disease Control & Prevention (CDC), syphilis rates have risen by 80% since 2018, gonorrhea cases have increased by 11%, and chlamydia remains high despite a slight decrease. This underscores the urgent need for innovative prevention strategies. One such strategy, Doxycycline Post-Exposure Prophylaxis (DoxyPEP), has emerged as a powerful tool in the fight against STIs, but it has also become a target of politically-motivated attacks fueled by misinformation and bigotry. DoxyPEP involves taking a dose of the antibiotic doxycycline after condomless sex to prevent bacterial STIs. While studies have repeatedly demonstrated its safety and efficacy, certain politicians, most notably Florida Senator Marco Rubio, have launched a crusade against DoxyPEP, jeopardizing the health and well-being of countless people.

While Senator Rubio and others leverage misinformation to fuel a politically-motivated crusade against the CDC’s new DoxyPEP guidelines, the evidence is clear: DoxyPEP is a safe, effective, and urgently needed tool to combat the nation's skyrocketing STI rates, particularly among the LGBTQ+ community already facing systemic healthcare disparities.

DoxyPEP: Backed by Science, Embraced by Communities

Fortunately, the effectiveness of DoxyPEP isn't based on conjecture or political ideology; it's firmly rooted in scientific evidence. Numerous studies have demonstrated its remarkable ability to reduce STI rates among those most vulnerable. In the groundbreaking DoxyPEP trial, researchers observed a sustained decrease in STI incidence among participants taking DoxyPEP, even with a short-term increase in sexual partners and condomless sex acts, as reported in Infectious Disease Special Edition. Further bolstering these findings, a separate study from the University of California, San Francisco, revealed that DoxyPEP reduced the risk of chlamydia and gonorrhea by nearly 70% among participants. These findings, along with a growing body of research, make it clear that DoxyPEP is a powerful tool with the potential to significantly impact the STI epidemic.

Real-World Success

The positive impact of DoxyPEP extends beyond clinical trials and into real-world settings. In San Francisco, where public health officials have proactively implemented DoxyPEP, the results have been significant. A study by the San Francisco Department of Public Health found that among participants, overall STI incidence fell by 58% after starting DoxyPEP. Chlamydia cases dropped by 67%, and early syphilis cases decreased by 78%. These real-world outcomes highlight the potential of DoxyPEP to effectively curb STI transmission when embraced by the community.

Addressing Resistance Concerns

One of the most frequently raised concerns about DoxyPEP is its potential to contribute to antibiotic resistance. While this is a valid concern that warrants careful consideration, the evidence suggests that the benefits of DoxyPEP outweigh the risks when implemented responsibly. As the CDC states in its report, "The potential for DoxyPEP to increase antimicrobial resistance is a theoretical concern, but current data do not suggest that DoxyPEP use has resulted in substantial increases in resistance." This finding is further bolstered by a study from the University of California, San Francisco, which found no significant increase in antibiotic resistance genes among DoxyPEP users. Additionally, the CDC emphasizes that the short course of doxycycline used in DoxyPEP, coupled with ongoing monitoring for resistance trends, can help mitigate this risk. These findings should reassure policymakers and the public that DoxyPEP, when implemented responsibly as part of a comprehensive STI prevention strategy, is unlikely to exacerbate the already concerning issue of antibiotic resistance.

Community Acceptance

Not only is DoxyPEP backed by robust scientific evidence, but it has also been met with enthusiasm and acceptance from the very communities it aims to protect. When offered DoxyPEP as a prevention option, people at risk for STIs have demonstrated a strong desire to incorporate this tool into their sexual health practices. In San Francisco, for example, Dr. Hyman Scott reported that "about 39% of people ultimately decided that they wanted DoxyPEP as an STI prevention tool." This positive reception speaks volumes about the willingness of people to take charge of their sexual health and embrace new strategies for protecting themselves and their partners.

Political Roadblocks: Rubio's Disinformation Campaign

Despite the overwhelming scientific evidence and the positive response from those most impacted by STIs, DoxyPEP faces a formidable roadblock: a politically-motivated disinformation campaign spearheaded by figures like Senator Rubio. Driven by what appears to be a combination of ideological opposition and a disregard for evidence-based policymaking, Rubio has repeatedly attempted to discredit DoxyPEP and undermine its adoption.

In a press release riddled with inflammatory language, Senator Rubio proclaimed, “The CDC’s unscientific recommendation is dangerous and could lead to more antibiotic-resistant infections and deaths." This statement, however, directly contradicts the findings of the CDC itself, which clearly show that current data do not suggest that DoxyPEP use has resulted in substantial increases in resistance. Furthermore, Rubio's assertion that the CDC's recommendation is "unscientific" ignores the rigorous research and clinical trials that have consistently demonstrated DoxyPEP's safety and efficacy.

By cherry-picking statistics about antibiotic resistance without acknowledging the nuances of DoxyPEP's implementation and the evidence mitigating those risks, Rubio engages in a dangerous game of misinformation. His tactics, unfortunately, have the potential to dissuade patients from accessing a potentially life-saving prevention tool and hinder efforts to curb the STI epidemic.

Unmasking the Agenda

A closer look at Senator Rubio's record reveals a disturbing pattern of opposition to policies that benefit the LGBTQ+ community, raising serious questions about the motivations behind his crusade against DoxyPEP. His voting history, as reflected in his 0 out of 100 score on the Human Rights Campaign's Congressional Scorecard, paints a picture of an anti-LGBTQ+ agenda. From opposing marriage equality to supporting discriminatory bathroom bills, Rubio has consistently aligned himself with those who seek to marginalize and harm the LGBTQ+ community.

As HRC President Kelley Robinson aptly stated, "Throughout his career, Sen. Rubio has repeatedly put his personal beliefs ahead of the needs of his constituents, particularly LGBTQ+ Floridians." His stance on DoxyPEP, a measure that would primarily benefit men who have sex with men (MSM) and transgender women, aligns with this pattern of disregard for the well-being of the LGBTQ+ community. By framing a scientifically sound public health intervention as "dangerous" and "unscientific," Rubio perpetuates harmful stereotypes and undermines efforts to address a health crisis that disproportionately impacts LGBTQ+ people.

The Dangers of Politicized Health

The case of DoxyPEP lays bare a disturbing trend in contemporary politics: the cynical manipulation of public health for political gain. When evidence-based interventions like DoxyPEP are distorted and demonized, the consequences extend far beyond a single policy debate. Allowing political agendas to dictate public health decisions undermines trust in science, erodes support for vital programs, and ultimately puts lives at risk.

This pattern of politically-motivated attacks on healthcare is particularly pronounced when it comes to the LGBTQ+ community. Across the country, conservative lawmakers at all levels of government are pushing a discriminatory agenda that seeks to restrict access to essential healthcare services for LGBTQ+ people. From attempts to ban gender-affirming care for transgender youth to efforts to allow healthcare providers to refuse service to LGBTQ+ patients, these attacks represent a clear and present danger to the health and well-being of an already marginalized community.

Senator Rubio's crusade against DoxyPEP must be understood within this broader context. His actions are not about protecting public health; they are about scoring political points by exploiting prejudice and fear. When those in positions of power prioritize ideology over evidence and demonize vulnerable communities, the consequences can be devastating.

The Path Forward: Equity, Access, and Comprehensive Prevention

To effectively address the STI epidemic, we must move beyond the politically-motivated roadblocks erected by those who prioritize ideology over evidence. A truly effective response requires a commitment to equity, access, and comprehensive prevention strategies that center the needs of those most impacted.

It's crucial to acknowledge that STIs do not impact all communities equally. As highlighted in the U.S. Department of Health and Human Services' National Strategic Plan for addressing STIs, certain populations, including gay and bisexual men, transgender people, and young people, bear a disproportionate burden of these infections. This disparity is driven by a complex interplay of factors, including stigma, discrimination, and barriers to accessing quality healthcare. For example, in 2018, more than 50% of primary and secondary syphilis infections occurred among MSM. These disparities demand a targeted and equitable approach to STI prevention, one that prioritizes the needs of those most vulnerable and addresses the systemic factors that contribute to their increased risk.

The Urgency of Action

The urgency of the STI epidemic demands swift and decisive action. We can no longer afford to let misinformation and political maneuvering hinder the implementation of evidence-based solutions like DoxyPEP. As Dr. Jonathon Cherabie, an Infectious Disease physician, pointedly stated on Twitter, "To state that this move [DoxyPEP implementation] is 'political' when two MAJOR trials have shown how beneficial this intervention is, in the midst of a massive increase in STIs especially syphilis is disingenuous." Dr. Cherabie goes on to highlight the hypocrisy of fixating on unfounded fears of antibiotic resistance with DoxyPEP while ignoring its use for other purposes like acne and malaria prophylaxis. His words serve as a potent reminder that the opposition to DoxyPEP often stems not from legitimate scientific concerns, but from a desire to undermine the health and well-being of LGBTQ+ people. Every day that passes without readily available DoxyPEP represents missed opportunities to prevent new infections and protect the health of marginalized communities.

A Multifaceted Approach

It's important to recognize that DoxyPEP, while a powerful tool, is not a standalone solution to the STI epidemic. To truly make a lasting impact, we need a comprehensive approach that addresses the complex nature of this public health crisis.

This comprehensive strategy must prioritize:

• Expanded Access to Testing and Treatment: Timely and affordable access to STI testing and treatment is paramount. We must remove financial and logistical barriers that prevent people from seeking care, ensuring that everyone can get tested and treated promptly and effectively.

• Comprehensive Sexual Health Education: Accurate, inclusive, and age-appropriate sexual health education is fundamental to empowering people to make informed decisions about their sexual health. We must move away from abstinence-only approaches and embrace education that encompasses a wide range of topics, including consent, contraception, and STI prevention methods.

• Addressing Stigma and Discrimination: Stigma surrounding STIs prevents people from seeking testing and treatment, perpetuating the cycle of transmission. We must foster open and honest conversations about sexual health, challenge harmful stereotypes, and create a more supportive and inclusive environment for those affected by STIs, especially at points of care.

• Adequate Funding for Public Health Initiatives: Effectively combating the STI epidemic requires robust and sustained funding for public health programs. This includes resources for research, surveillance, prevention programs, and healthcare infrastructure.

Conclusion

The alarming rise of STIs in the United States demands our unwavering attention and a commitment to evidence-based solutions. Inaction is not an option; it carries the weight of preventable infections, long-term health complications, and lives needlessly impacted. DoxyPEP represents “the most exciting intervention for STI prevention in two decades,” a scientifically sound intervention with the potential to significantly curb the STI epidemic, particularly among the LGBTQ+ community. We cannot allow political maneuvering and misinformation campaigns to derail this progress.

As advocates, policymakers, and industry professionals, we have the power to turn the tide against this epidemic:

1. Integrate DoxyPEP into Policy Agendas: For policymakers, champion legislation and funding initiatives that expand access to DoxyPEP, ensuring its inclusion in Medicaid, ADAPs, and private insurance plans. Advocate for comprehensive sexual health education and robustly funded public health programs.

2. Harness Your Platform to Disseminate Accurate Information: Leverage your professional networks, social media platforms, and public speaking engagements to counter misinformation surrounding DoxyPEP. Share the overwhelming scientific evidence supporting its efficacy and safety, and challenge those who prioritize political agendas over public health.

3. Advocate for FDA Approval: While the CDC has issued guidelines for DoxyPEP, it remains an off-label use of doxycycline. Advocate for the FDA to formally approve this use, which would further solidify its legitimacy, potentially expand insurance coverage, and increase confidence among healthcare providers and patients.

The fight for effective STI prevention is a fight for public health, for equity, and for the well-being of us all. Let's leverage our collective influence to ensure that DoxyPEP becomes a standard tool in our arsenal against this urgent public health crisis.

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

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

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

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

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

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

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

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

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