Bipartisan Hepatitis C Elimination Plan Presents Critical Lame Duck Opportunity
The presidential election results have created an urgent six-week window for advancing the National Hepatitis C (HCV) Elimination plan. With significant changes to federal healthcare policy likely under the incoming administration, Senators Bill Cassidy (R-LA) and Chris Van Hollen (D-MD) see the lame duck session as a critical opportunity to secure this public health initiative. The legislation's prospects benefit from Senator Cassidy's likely chairmanship of the Senate Health, Education, Labor and Pensions (HELP) Committee in the next Congress, providing potential continuity for implementation oversight despite the broader administrative transition.
The Congressional Budget Office's analysis provides compelling economic justification for swift action. Current estimates indicate between 2.5 and 3.0 million people in the United States are living with HCV, yet only one in three people diagnosed receive treatment within 12 months. This treatment gap resulted in over 14,000 deaths from HCV-related complications in 2020 alone - deaths that could have been prevented with existing curative treatments that demonstrate 95% effectiveness.
The scope of this crisis demands federal intervention. State-level efforts, while demonstrating potential, have proven insufficient for achieving elimination goals. The Cassidy-Van Hollen legislation addresses fundamental barriers beyond medication costs, including provider education, treatment infrastructure, and implementation support. These comprehensive elements, combined with projected long-term savings, position this bill as a rare opportunity for bipartisan achievement in public health policy during a period of political transition.
Economic Analysis Reveals Complex Implementation Challenges
The Congressional Budget Office's June 2024 analysis examines two treatment expansion scenarios among Medicaid enrollees, revealing both significant savings potential and implementation complexities. Under a conservative 10% peak increase in treatment rates, averted healthcare spending would reach $0.7 billion over ten years against $0.5 billion in testing and treatment costs. A more aggressive 100% peak increase could generate $7 billion in averted costs against $4 billion in treatment expenses.
These projections, however, exclude critical implementation costs that could significantly impact program effectiveness. The CBO notes successful expansion requires substantial investment in outreach activities, provider education, and infrastructure development. As treatment rates increase, identifying and engaging people who need treatment becomes progressively more complex and costly - a challenge demonstrated by state-level experiments with subscription models.
Louisiana's program illustrates both the potential and limitations of cost-focused approaches. While reducing projected costs from $760 million to $35 million annually and treating over 1,600 people since 2019, treatment rates have steadily declined. Washington state's experience proves more concerning - treatment rates fell below pre-subscription levels, dropping from 6,649 prescriptions in 2017 to 2,409 in 2021.
The CBO's analysis particularly focuses on Medicaid enrollees, noting this population includes many people at elevated risk for HCV, including people who inject drugs and people who have been involved with the criminal justice system. This targeted approach allows for more precise cost projections while addressing a key demographic in HCV elimination efforts. Notably, the standard 10-year budget window may undervalue long-term benefits, as many health complications from untreated HCV develop over decades.
State experiences reveal important lessons for federal policy design. Washington's planned initiatives - including emergency room screening programs, mobile testing units, and expanded clinic access - remained largely unrealized due to budget constraints. Louisiana's model, despite demonstrating viable cost-control mechanisms, approaches expiration without renewal funding. These outcomes emphasize the need for sustained federal support rather than relying on state-level innovation.
Carceral Settings Reveal Critical Implementation Lessons
Treatment access in prisons provides critical insight into healthcare system readiness for HCV elimination. Despite controlled environments ideal for treatment delivery, systematic failures in carceral settings expose fundamental weaknesses in current approaches. Between 2014-2019, 1,013 people died from HCV-related complications while incarcerated, with the prison death rate reaching 10.0 per 100,000 people by 2019 - more than double the 4.3 per 100,000 rate in the general population.
State-level data reveals how policy choices, rather than medical constraints, drive treatment disparities. Florida reported 7,000 untreated cases in 2021 despite court-ordered treatment expansion. Texas provided treatment to only half of its known HCV-positive population of 11,301-15,563 people. Oklahoma's statistics prove particularly alarming - its prison death rate of 71.9 per 100,000 exceeds its general population rate by more than five times, despite the corrections department requesting nearly $100 million for increased treatment.
Recent investigations have catalyzed improvements in several states' treatment protocols. The FDA's 2024 approval of point-of-care testing technology enables rapid diagnosis and treatment initiation in carceral settings. However, implementation remains inconsistent across state systems, with many maintaining restrictive eligibility criteria that delay treatment until people develop severe liver damage. Texas, for example, still lacks universal screening protocols at intake facilities, leaving countless cases unidentified and untreated.
Legal challenges have prompted some progress. Florida, under court order, treated over 3,000 people between 2018 and 2021. Texas agreed to treat at least 1,200 people annually following a 2020 settlement. However, these court-mandated improvements highlight both the potential for rapid treatment expansion and the need for comprehensive federal policy to ensure consistent care delivery.
These systemic failures in controlled environments underscore broader implementation challenges. If consistent HCV treatment proves difficult in settings with stable populations and established healthcare infrastructure, addressing treatment gaps in the general population requires even more robust support systems and sustained funding commitments.
Implementation Barriers Demand Federal Solutions
Provider engagement represents a critical barrier beyond cost reduction. Despite HCV treatment's relative simplicity compared to managing diabetes, primary care providers often hesitate to initiate treatment. A recent study found that while 94% of specialists prescribe HCV treatment, only 23% of primary care providers do so. Insurance authorization processes exacerbate this reluctance - a single prior authorization request consumes 35 minutes of staff time responding to questions often designed to find denial justifications rather than facilitate treatment.
Geographic barriers particularly impact rural communities. In Louisiana, people in certain parishes travel 50-70 miles to reach HCV treatment providers. This distance barrier disproportionately affects people receiving Medicaid who often lack reliable transportation. Rural provider shortages compound these access issues - many rural clinics lack staff trained in HCV care, while others face chronic understaffing that limits capacity for managing complex prior authorization requirements.
Louisiana's experience highlights how workforce challenges undermine treatment expansion even when medication costs are controlled. The state's STI, HIV, and Hepatitis Program struggles with chronic understaffing due to uncompetitive wages and complex contracting arrangements. These staffing limitations directly impact program effectiveness - outreach activities decrease, patient engagement suffers, and treatment initiation rates decline despite medication availability.
The proposed federal legislation addresses these systemic barriers through targeted investments in:
Provider education and ongoing support programs
Infrastructure development for treatment expansion
Resources for patient engagement and retention
Support for innovative delivery models including mobile clinics
Integration with existing healthcare systems and substance use treatment programs
Workforce development and training initiatives
Early state experiences demonstrate that successful implementation requires simultaneous investment across these domains. Washington's inability to realize planned initiatives - including emergency room screening programs and mobile testing units - despite cost controls highlights the need for comprehensive federal support beyond medication access.
Political Window Demands Swift Advocacy Action
The lame duck session presents a rare confluence of political factors favoring HCV elimination policy. Senator Cassidy's likely ascension to HELP Committee chair in the next Congress, combined with his partnership with Senator Van Hollen, bridges current and future implementation efforts. The CBO's projection that a national elimination program could prevent 24,000 deaths and save $18.1 billion in healthcare costs provides compelling economic justification for swift action.
Recent developments strengthen the case for immediate passage. The FDA's approval of point-of-care testing technology enables rapid diagnosis and treatment initiation, particularly in high-impact settings. Louisiana's subscription model expiration creates urgency for federal intervention to sustain successful state initiatives. These factors, combined with potential changes to federal healthcare policy under the incoming administration, make the current legislative window critical for securing comprehensive HCV elimination policy.
The evidence from state experiences demonstrates both the promise and limitations of isolated initiatives. Federal legislation can build on these lessons, providing comprehensive support for implementation while ensuring sustained political commitment through bipartisan leadership. With only weeks remaining in the current congressional session, advocates must emphasize the unique opportunity this moment presents for achieving significant public health progress.
Conclusion
The opportunity for action is narrow, but the potential impact is immense. The bipartisan momentum behind the National Hepatitis C Elimination plan is a chance to advance public health policy at a time when it is desperately needed. The barriers are clear: implementation challenges, provider hesitancy, and geographic and economic obstacles. Yet the solutions are within reach, and the economic and human benefits are undeniable. Federal intervention can address the systemic gaps that state efforts alone cannot fill, providing comprehensive support to save lives and reduce costs.
However, uncertainty looms over the future of public health funding and support under a second Trump Administration, which looks to bring significant changes to federal healthcare priorities. This adds urgency to the current push for bipartisan action.
As advocates, the time to push is now. The lame duck session represents a rapidly closing window to secure funding, address legislative gaps, and ensure continuity into the next Congress. Swift passage of this legislation would not only demonstrate the power of bipartisan collaboration but also offer a meaningful legacy—one that saves thousands of lives and sets a precedent for effective, equitable public health initiatives in the United States. We cannot afford to let this window close without taking action.
Partisan Battles Put Public Health Programs in Jeopardy
Federal support for public health programs stood at a critical inflection point in 2024, with mounting evidence that political polarization threatens to undermine decades of progress in disease prevention and healthcare access. The O'Neill Institute's analysis of the HIV response highlights a broader pattern affecting America's entire public health infrastructure: an erosion of bipartisan cooperation is creating tangible negative impacts on healthcare delivery and outcomes.
Recent developments illustrate this crisis. The President's Emergency Plan for AIDS Relief (PEPFAR), historically celebrated as one of the most successful public health initiatives in U.S. history, received only a one-year reauthorization in March 2024 instead of its traditional five-year renewal. This shortened timeframe introduces uncertainty for partner countries and threatens program stability. Similarly, Tennessee's rejection of $8.3 million in Centers for Disease Control and Prevention (CDC) HIV prevention funding exemplifies how state-level political decisions can directly impact public health services and infrastructure.
The implementation of the Inflation Reduction Act (IRA), while advancing certain healthcare affordability goals, has created unintended consequences for safety-net providers. Changes to drug pricing and reimbursement structures are affecting 340B program revenues that support critical healthcare services for vulnerable populations.
These challenges emerge against a backdrop of chronic underfunding, with the Prevention and Public Health Fund losing $12.95 billion between FY 2013-2029. This combination of political polarization and resource constraints threatens to create long-lasting negative impacts on healthcare access and population health outcomes, demanding a renewed commitment to depoliticizing essential public health infrastructure and services.
An Erosion of Bipartisan Support
The deterioration of bipartisan cooperation in public health policy represents a significant shift from historical norms that prioritized health outcomes over political ideology. PEPFAR exemplifies this change. Created under President George W. Bush's administration in 2003, PEPFAR has saved over 25 million lives and currently provides HIV prevention and treatment services to millions across 55 countries. Despite this documented success, the program's 2024 reauthorization became entangled in partisan debates over abortion rights.
"I'm disappointed," Rep. Michael McCaul (R-Texas) stated. "Honestly, I was looking forward to marking up a five-year reauthorization, and now I'm in this abortion debate." McCaul added that "a lot of the Freedom Caucus guys would not want to give aid to Africa." The inclusion of abortion rights in the reauthorization debate reflects ongoing polarization within Congress, which has hindered the passage of traditionally bipartisan public health initiatives. This opposition led to an unprecedented short-term reauthorization through March 2025, creating instability for partner countries and threatening program sustainability.
At the state level, Tennessee's decision to reject $8.3 million in CDC HIV prevention funding reflects similar political calculations overshadowing public health considerations. The state's choice to forgo federal support impacts disease surveillance, testing services, and prevention programs that serve people living with HIV and those at risk of acquiring HIV. This rejection of federal funding occurred despite Tennessee ranking 7th among U.S. states for new HIV diagnoses in 2022.
Such decisions mark a stark departure from historical bipartisan support for public health initiatives. Previous health emergencies, from polio to the early HIV epidemic, generated collaborative responses across party lines. The Ryan White HIV/AIDS Program, established in 1990, exemplified this approach, receiving consistent bipartisan support for reauthorization until 2009, its last reauthorization.
The shift away from bipartisan cooperation extends beyond specific programs to affect broader global health initiatives. PEPFAR's instability impacts America's global health leadership position and threatens the progress made in HIV prevention and treatment worldwide. The program's uncertain future affects procurement planning, workforce retention, and long-term strategy development in partner countries, potentially reversing decades of progress in global health security.
Funding Crisis and Infrastructure Impacts
The public health funding landscape reveals a pattern of chronic underinvestment that threatens core infrastructure capabilities. The Prevention and Public Health Fund (PPHF), established under Section 4002 of the Patient Protection and Affordable Care Act of 2010 (ACA) to provide sustained investment in prevention and public health programs, has lost $12.95 billion between FY 2013-2029 through repeated cuts and diversions. These reductions represent approximately one-third of the fund's originally allocated $33 billion, significantly limiting its ability to support essential public health services.
The CDC faces mounting infrastructure challenges due to stagnant funding. While COVID-19 response funds provided temporary relief, these emergency appropriations have been largely obligated or rescinded. The Fiscal Responsibility Act of 2023 rescinded approximately $13.2 billion in emergency response funding from public health agencies, including the CDC, creating a significant funding cliff. Programs facing severe reductions include the Advanced Molecular Detection program, which will revert to its annual base appropriation of $40 million from a one-time supplemental of $1.7 billion, severely limiting disease surveillance capabilities.
State-level impacts manifest in critical staffing shortages and outdated systems. Public health experts estimate that state and local health departments need to increase their workforce by nearly 80%, requiring an additional 26,000 full-time positions at the state level and 54,000 at the local level. The National Wastewater Surveillance System, crucial for early detection of disease outbreaks, faces reduction from $500 million in supplemental funding to a proposed $20 million in FY 2025, threatening its operational viability.
These funding constraints create cascading effects across the public health system. The Public Health Infrastructure Grant program, which has awarded $4.35 billion to strengthen foundational capabilities across 107 state, territorial, and local health departments, expires in FY 2027 without a clear sustainability plan. Similarly, the Bridge Access Program, ensuring COVID-19 vaccine access for 25-30 million adults without health insurance, ended in August 2024, leaving millions without access to updated vaccines. These funding cuts have significantly curtailed prevention services, limiting the CDC's ability to maintain disease surveillance systems and provide timely interventions.
Healthcare Access and Safety Net Impacts
The implementation of the Inflation Reduction Act (IRA) has created unintended consequences for safety-net providers, particularly through its impact on the 340B Drug Pricing Program. Research examining 340B-eligible hospitals reveals concerning trends in charity care provision, with only 9 out of 38 hospitals (23.7%) reporting increases in charity care as a percentage of annual revenues after gaining 340B eligibility. This decline in charity care occurs despite significant revenue increases from 340B participation, raising questions about program effectiveness in expanding healthcare access for vulnerable populations.
Data indicates that hospital participation in the 340B program correlates with substantial revenue growth but diminishing charity care services. The average decrease in charity care provision as a percentage of annual revenues was 14.79% across examined hospitals. This trend is particularly concerning in states with high poverty rates. For example, three West Virginia hospitals—Cabell-Huntington Hospital, Pleasant Valley Hospitals, and Charleston Area Medical Center—reported some of the largest decreases in charity care despite serving a state where 28.1% of people earn less than 150% of the Federal Poverty Level.
Federally Qualified Health Centers (FQHCs) face unique challenges under these changing dynamics. Unlike hospitals, FQHCs must reinvest every 340B dollar earned into patient care or operations to maximize access. However, the IRA's implementation of Medicare drug price negotiations and insulin cost caps affects the rebate calculations that support these reinvestments, potentially reducing available resources for patient care.
Medication access challenges extend beyond 340B implications. Pharmacy Benefit Managers (PBMs) have responded to IRA provisions by adjusting formularies, sometimes excluding medications that previously generated significant rebates. This particularly impacts insulin coverage, where certain products have been dropped from formularies despite the IRA's intent to improve insulin affordability. These decisions create new barriers to medication access for people who rely on safety-net providers for healthcare services.
Public Health Consequences
The convergence of political polarization and funding constraints creates measurable negative impacts on disease prevention efforts, weakening the capacity of public health systems to effectively address emerging and ongoing health threats. Data from the CDC shows that despite a 12% decrease in new HIV diagnoses over the past five years, driven largely by a 30% reduction among young people, progress in reducing new infections has stalled. The lack of sufficient funding, compounded by political challenges, has limited the capacity to expand prevention services, enhance outreach, and maintain necessary treatment programs. The 31,800 new HIV diagnoses reported in 2022 highlight how flat funding and political barriers have hindered further advances. These barriers prevent scaling up successful prevention strategies, limit access to innovative treatments, and constrain efforts to address disparities in vulnerable communities. Notably, significant disparities persist, particularly among gay men across all racial and ethnic groups, transgender women, Black people, and Latino people. These populations continue to face systemic barriers to healthcare access, stigma, and a lack of targeted resources, all of which contribute to ongoing inequities in health outcomes.
Vaccine hesitancy, intensified by political division, threatens population health outcomes. The CDC reports that routine vaccination rates for kindergarten-age children have not returned to pre-pandemic levels, while exemption claims have increased. Nearly three-quarters of states failed to meet the federal target vaccination rate of 95% for measles, mumps, and rubella during the 2022-23 school year, increasing outbreak risks.
Health disparities are exacerbated when political decisions override public health considerations. Tennessee's rejection of CDC funding exemplifies how political choices can disproportionately impact communities already experiencing health inequities by reducing access to essential prevention and treatment services. Such decisions particularly affect regions where HIV rates among transgender women increased by 25%, and Latino gay men now account for 39% of all HIV diagnoses among men who have sex with men.
Community health center sustainability faces mounting challenges as funding mechanisms become increasingly unstable. The expiration of COVID-19 emergency funding, combined with uncertain 340B revenues and growing workforce shortages, threatens these essential safety-net providers. Public health experts estimate an 80% workforce gap in state and local health departments, hampering their ability to deliver essential services and respond to emerging health threats.
Uncertain Future Under New Administration
With Donald Trump’s return to the White House, the future of the nation's public health programs remains uncertain. The president-elect’s stance on health policy has historically emphasized deregulation, work requirements, and reductions in safety net programs, and early indications suggest a continuation of these priorities.
The new administration is poised to bring changes that could scale back Medicaid, reduce the Affordable Care Act’s consumer protections, and restrict reproductive health access—all of which have the potential to exacerbate existing health inequities and widen the gap in healthcare access for marginalized populations. Furthermore, the inclusion of vaccine skeptic Robert F. Kennedy Jr. among Trump’s advisors could undermine public confidence in vaccination campaigns and other science-backed public health interventions.
Although Trump has not explicitly targeted programs like PEPFAR, the Ryan White Program, or other core public health initiatives, the broader agenda of cutting federal funding and shifting health policy decisions to the state level raises significant concerns. These shifts could ultimately weaken the country’s safety net programs, leading to an increase in uninsured rates and preventable health disparities.
The reemergence of a more partisan approach to healthcare policy, especially one with a focus on cost-cutting and minimal regulatory oversight, risks destabilizing public health progress made over the last several decades. Public health stakeholders—ranging from healthcare providers to patient advocates—will need to prepare for a period of heightened uncertainty and potentially significant changes to the public health landscape.
The coming months will likely determine how public health priorities and programs evolve in this new political era. Advocacy groups, healthcare professionals, and policymakers must remain vigilant and ready to respond as the Trump administration shapes its healthcare policy agenda, one that could either sustain or significantly alter the course of public health in the United States. Such shifts threaten to undermine the nation’s public health stability, with repercussions for healthcare costs, access, and the ability to prevent and control emerging health threats.
A Patient Advocate’s Perspective: The Call of this Moment
Earlier this year, I asked myself and the global public health field a serious question; Are we dedicated to the service of humanity, or are we serving our egos? That question rightfully ruffled feathers that needed to be ruffled. The reality is we live in a time that because of the loudest parties doing the very least, the “truth” is a question instead of fact.
We seem to be on a precipice when we should be finding ourselves at a critical decision point. As we approach the end of the year, an election that will undoubtedly shape our work, global conflict, the realization of climate change and the 2025 Standard Development Goals, I find myself asking a different question, “Are we ready and willing to do what is needed to meet this moment?” Additionally, are we prepared to get out of our own way or get out of the way of others if we are the obstacles?
We find ourselves in a world of increased polarization, the “us versus them” chasm that has only widened over the years, creating an environment that makes bipartisanship seem impossible. We also find ourselves at a stalemate in the HIV space; it is no longer the “sexy” disease with the global leadership and investment it has had. Our political leadership lacks follow through on its historical, robust commitments, non-profits are strained and advocates are burnt out. We have yet to acknowledge the lasting impact COVID-19 has had on all of us and the permanent damage it has done to trust in governments, science, and the goodwill of our neighbors, both domestically and globally. We have long shouted that communities who have led our movement since the early days should be involved in every element of the process. I believe that it is long past due to these same communities who are most impacted (not only by HIV and chronic illnesses but are in the center of the target of divisive political issues) should be holding the reins, they know what their communities need and want.
Self-reflection should be an essential part of our work, collectively and individually. We need to have space and time to reflect on our personal impact, influence, and commitment. In the field of public health, who does and how we decide who has power can have lasting and profound impact on the well-being of millions. Who is sitting at the top of the food chain at places like the CDC matters. Qualifications and experience over the partisan nonsense that we daily find ourselves in should be priority number one. When we allow the divisive climate to infiltrate our own ranks it has consequences. CANN’s CEO, Jen Laws, frequently reflects on the damage caused by Democrats’ role in forcing out Dr. Brenda Fitzgerald at the Centers for Disease Control & Prevention (CDC). “Fitzgerald had an objectively good background for leading the CDC, especially with her history of improving Georgia’s childhood vaccine uptake. Ending up in an environment where a known HIV vaccine scam artist was leading the CDC was absolutely catastrophic to our COVID response, public trust in public health, and renewed vaccine hesitancy.” Jen has never been one to mince words. Indeed, that short-sightedness led by partisan motivation has resulted in renewed vaccine hesitancy, HIV denialism, and weaponizing health conditions in order to oppose the civil rights of immigrants.
While ethical oversight is critical, our focus should remain on appointing leaders who are scientifically rigorous, experienced, and free from extreme ideological positions that could harm public health efforts. Effective public health leadership requires the ability to build coalitions, foster trust, and base decisions on the best available evidence—regardless of political affiliation. The COVID-19 pandemic laid bare the need for clear, consistent messaging and policies that prioritize public health over politics.
As we tackle ongoing public health challenges from infectious diseases to the opioid epidemic, rising rates of chronic illness and emerging health threats, it is imperative that future CDC leaders be chosen based on their qualifications and experience, not as a result of political maneuvering. Bipartisan collaboration ensure that the CDC and other agencies remain focused on their primary mission: protecting the health and well-being of all Americans.
This moment calls for us to return to objective truth instead of fear mongering and conspiracy, the acceptance that two things can be true at the same time, but it also calls on us to have hope that there is a future where public health is something we can agree on both sides of the aisle about. I don’t think that starts with our politicians, that starts with each of us willing to cross the street to meet our neighbors, to find what we have in common instead of the things that have separated us for far too long. We need to return to a culture where our politicians are far more concerned about their constituents instead of sound bites, where we lead with the intention of collaboration and finding bipartisan ways to renew political investment ensuring equitable access to health for everyone.
We are indeed at an inflection point, as highlighted by our friends at the O’Neill Institute. We must renew our commitment to ending HIV and the partisanship that drives disparities in access to care, degradation of our civil and human rights, and blinds us to the humanity of our neighbors.
Public Input Needed: Offer Input on HIV, STI, Vaccine, and Hepatitis Policies
The Office of Infectious Disease and HIV/AIDS Policy (OIDP) at the Department of Health and Human Services (HHS), alongside the White House Office of National AIDS Policy (ONAP), has released a Request for Information (RFI) to inform the 2026–2030 national strategic plans for HIV/AIDS, sexually transmitted infections (STIs), vaccines, and viral hepatitis. This RFI represents a key opportunity for public health stakeholders to shape policies that will directly impact prevention, treatment, and care for millions of people across the country.
Why Strategic Planning Matters
National strategic plans guide public health efforts at federal, state, and local levels. They establish priorities, direct resource allocation, and shape policies that determine the availability and quality of health services. The upcoming 2026–2030 plans aim to build on past progress while addressing new and evolving challenges.
For instance, the National HIV/AIDS Strategy for 2022–2025 set ambitious goals to reduce new HIV infections by 75% by 2025 and by 90% by 2030. Similarly, the Viral Hepatitis National Strategic Plan aims to eliminate viral hepatitis as a public health threat by 2030. These strategies are powerful tools that help us move toward improved health outcomes by setting clear goals and priorities.
What the Strategic Plans Address
Each of the four national strategies addresses unique public health challenges:
National HIV/AIDS Strategy – Sets forth a roadmap to end the HIV epidemic in the United States, with goals including:
Prevent New HIV Infections: Increasing awareness, testing, and access to prevention tools like PrEP and PEP, while reducing HIV-related stigma.
Improve Health Outcomes for People with HIV: Promoting early linkage to care, long-term retention, and viral suppression through integrated and culturally competent health services.
Reduce Disparities and Inequities: Addressing structural factors such as stigma and discrimination and focusing efforts on disproportionately affected populations.
Achieve Integrated, Coordinated Efforts: Promoting collaboration across sectors to integrate HIV prevention with services for STIs, viral hepatitis, and mental health, among others.
Sexually Transmitted Infections National Strategic Plan – Aims to respond to rising STI rates by:
Preventing New STIs: Increasing awareness, expanding prevention activities, and improving vaccination rates for HPV.
Improving Health Outcomes: Expanding screening and treatment in impacted communities.
Accelerating STI Research and Innovation: Supporting the development of vaccines, diagnostic tools, and treatment options.
Reducing STI Disparities and Inequities: Addressing stigma, expanding culturally competent services, and addressing social determinants of health.
Achieving Integrated, Coordinated Efforts: Promoting collaboration across STI, HIV, and viral hepatitis prevention efforts.
Vaccines National Strategic Plan – Focuses on eliminating vaccine-preventable diseases by:
Fostering Innovation in Vaccine Development: Supporting research and development of new vaccines and technologies.
Maintaining Vaccine Safety: Enhancing safety monitoring and public awareness of vaccine-related risks.
Increasing Vaccine Knowledge and Confidence: Addressing vaccine misinformation and improving public understanding of vaccine benefits.
Improving Access and Uptake: Reducing barriers to vaccine access and improving coverage, especially in underserved populations.
Supporting Global Immunization Efforts: Strengthening international collaboration on vaccine initiatives.
Viral Hepatitis National Strategic Plan – Targets the elimination of viral hepatitis as a public health threat, with goals such as:
Preventing New Infections: Increasing vaccination for hepatitis A and B and addressing transmission among people who use drugs.
Improving Health Outcomes: Ensuring timely testing, treatment, and retention in care for people with viral hepatitis.
Reducing Disparities and Inequities: Addressing stigma, enhancing culturally competent care, and focusing resources on high-risk populations.
Improving Surveillance and Data Usage: Enhancing data collection and sharing to better understand and address viral hepatitis trends.
Achieving Integrated, Coordinated Efforts: Promoting partnerships that address viral hepatitis, HIV, STIs, and substance use disorders together.
The Importance of Public Input
Public participation in the RFI process ensures that these plans reflect the real needs of communities. When stakeholders provide insights based on their experiences, it helps to ensure that strategic plans are grounded in the realities of public health challenges. The voices of people living with HIV (PLWH) and their advocates have led to a greater emphasis on reducing stigma and expanding access to essential services like mental health and substance use support. This type of feedback is needed in order to ensure that health strategies address barriers to care, particularly among marginalized populations, and incorporate promising approaches to delivering services and engaging communities.
By providing input, you can help shape strategies for integrating services across HIV, STIs, viral hepatitis, and vaccine-preventable diseases, making it easier for patients to navigate the healthcare system. Your insights could also highlight ways to leverage new technologies and data systems to improve health outcomes, ultimately influencing policies that determine the availability and quality of health services across the country.
How to Participate
To make your feedback impactful, it's important to examine the existing strategic plans (linked above) and identify areas that could benefit from improvement or expansion. Consider submitting detailed, data-driven feedback based on your experiences or expertise, connecting your observations with broader public health trends or research. Highlighting emerging issues that are currently underrepresented in the plans can also make a significant difference. Additionally, sharing effective practices from your work or community that could be scaled nationally will help ensure that these strategies are practical and inclusive.
The deadline for submitting comments is December 6, 2024, at 11:59 pm ET. You can participate by submitting your feedback through the online form. Your contribution can help create a public health system that is responsive to the needs of all communities.
Why Your Input Matters
By contributing to this RFI, you help ensure that public health strategies are grounded in evidence and lived experience, and are responsive to the communities most affected by HIV, STIs, viral hepatitis, and vaccine-preventable diseases. Your feedback can shape policies that address the most pressing needs of people impacted by these conditions, advance evidence-based approaches, reduce health disparities, and promote equity. Moreover, your input can help improve coordination across healthcare systems and levels of government, ultimately leading to better health outcomes for millions of people.
Your voice matters in shaping the future of public health. Participate in advocacy campaigns by joining public health advocacy groups working to ensure equitable health policies. Share this information with colleagues, networks, and community members who might also want to contribute their insights. Engaging in webinars or public discussions related to the strategic plans can also help you stay informed and connected, providing more opportunities to make an impact.
Final Thoughts
The 2026–2030 national strategic plans will shape public health policy in the U.S. for years to come. Your participation in the RFI process gives you a voice in crafting strategies that are effective, equitable, and responsive to community needs. By sharing your knowledge and experiences, you can help create a future where public health efforts truly serve all communities.
Together, we can make a difference—let's ensure that these plans reflect the needs of everyone, especially those most impacted.
The Great Disenrollment: Examining Medicaid's Post-Pandemic Shift
The Medicaid unwinding process that began in April 2023 has significantly impacted healthcare access and coverage retention across the United States. The unwinding, triggered by the end of pandemic-era continuous enrollment provisions, led to substantial shifts in Medicaid enrollment and revealed both strengths and weaknesses in our healthcare system. The process disproportionately affected communities of color and highlighted the need for targeted policy interventions to maintain healthcare access for vulnerable groups, including people living with HIV (PLWH).
The Scope of Medicaid Unwinding
During the COVID-19 pandemic, the Families First Coronavirus Response Act implemented the continuous enrollment provision in March 2020. This policy prohibited states from disenrolling Medicaid beneficiaries in exchange for enhanced federal funding, ensuring that people maintained health coverage during a time of unprecedented health and economic uncertainty. As a result, Medicaid enrollment surged from 71 million people in February 2020 to 94 million by April 2023, according to a Kaiser Family Foundation (KFF) analysis.
The end of the continuous enrollment provision on March 31, 2023, initiated a complex process of eligibility redeterminations for all Medicaid enrollees—a task of immense scale and complexity. By the end of the unwinding period, over 25 million people had been disenrolled from Medicaid, while over 56 million had their coverage renewed, as reported by KFF. The overall disenrollment rate stood at 31%, with significant variation across states. For instance, Montana reported a 57% disenrollment rate, while North Carolina's rate remained below 20%.
Systemic Challenges in the Unwinding Process
One of the most concerning aspects of the unwinding process was the high rate of procedural disenrollments. Of those who lost coverage, 69% were disenrolled for procedural reasons, such as not returning renewal paperwork, rather than being determined ineligible. This suggested that many people who lost coverage may have still been eligible for Medicaid but faced significant challenges navigating the renewal process successfully.
The Government Accountability Office (GAO) highlighted that administrative barriers contributed significantly to these procedural disenrollments. These barriers included:
Outdated Technology Systems: At least 11 states reported that their systems were old or difficult to use, making it challenging to produce real-time analytics essential for processing renewals effectively. This technological lag complicated efforts to implement necessary changes swiftly and efficiently.
Staffing Shortages: High turnover rates among eligibility workers led to vacancy rates reaching up to 20% in some states. Reports of low morale and burnout further affected the workforce's ability to handle the increased workload during the unwinding process.
Communication Barriers: States struggled to effectively engage people in the renewal process, particularly those facing language barriers. Non-English speakers often encountered longer wait times and struggled to reach assistance through call centers. These issues were compounded by a lack of robust state communication and engagement strategies.
Complex Paperwork: The renewal process often involved complicated forms and documentation requirements, which proved challenging for many enrollees to navigate, especially those with limited literacy or language skills.
Dr. Benjamin Sommers, a health policy expert at Harvard T.H. Chan School of Public Health, noted during the process, "The high rate of procedural disenrollments is particularly troubling. It indicates that we're not just seeing people leave Medicaid because they no longer qualify, but because they're struggling with the administrative hurdles of the renewal process."
These challenges led to frustration among enrollees and advocacy groups, highlighting the need for more streamlined and accessible renewal processes. The experience underscored the importance of investing in modernized eligibility systems, adequate staffing, and comprehensive communication strategies to ensure that eligible patients can maintain their coverage during future eligibility redeterminations.
National Enrollment Trends and State-Level Variations
Despite significant disenrollments during the unwinding process, Medicaid enrollment remained higher than pre-pandemic levels. As of May 2024, 81 million people were enrolled in Medicaid, an increase of about 10 million compared to pre-pandemic enrollment. However, this growth was not uniform across all populations. While adult enrollment remained over 20% above February 2020 levels, child enrollment was only about 5% higher.
Several factors influenced these disparities:
The pandemic's economic impact led to more adults becoming eligible for Medicaid due to job losses and income reductions.
States that expanded Medicaid under the Affordable Care Act saw more substantial increases in adult enrollment.
Children's enrollment remained relatively stable due to higher pre-pandemic enrollment rates and broader eligibility criteria through programs like the Children's Health Insurance Program (CHIP).
The impact of the unwinding process varied significantly across states, reflecting differences in policies, system capacities, and approaches. States that expanded Medicaid under the Affordable Care Act generally showed higher retention rates. Additionally, states that adopted strategies to streamline the renewal process, such as increasing ex parte (automated) renewals, saw better outcomes.
For example, Arizona, North Carolina, and Rhode Island achieved ex parte renewal rates exceeding 90%, while states like Pennsylvania and Texas had rates of 11% or less. These differences underscored the importance of state-level policies and systems in determining unwinding outcomes.
The Centers for Medicare & Medicaid Services (CMS) reported that states with higher ex parte renewal rates tended to have modernized eligibility systems that could effectively leverage data from other programs to confirm eligibility. This reduced the administrative burden on patients and helped maintain continuous coverage.
These variations highlighted the critical role of state-level decision-making and infrastructure in shaping Medicaid enrollment outcomes during and after the unwinding process. They also pointed to potential best practices for maintaining coverage and streamlining enrollment processes in the future.
Racial and Ethnic Disparities in Medicaid Disenrollment
A particularly concerning aspect of the unwinding process is its disproportionate impact on communities of color. According to the Southern Poverty Law Center (SPLC), more than half of the people who lost coverage were people of color. This disparity is exacerbated by existing barriers to healthcare access. The SPLC notes that communities of color face more barriers to healthcare access, such as limited internet, transportation, and inflexible job schedules.
The impact is particularly severe in states that have not expanded Medicaid. The SPLC report highlights that "residents from Alabama, Florida, Georgia, and Mississippi make up over 40% of the adults in the coverage gap nationwide. People of color make up about 60% of the coverage gap nationwide."
The Human Impact of Coverage Loss
The impact of coverage loss extends beyond statistics. Personal stories highlight the real-world consequences of the unwinding process. Justin Gibbs, a 53-year-old from Ohio, had to go without blood pressure medication for a week after losing his Medicaid coverage in December, according to CNN. Such disruptions in care can have serious health implications, particularly for people managing chronic conditions.
A KFF survey reveals the broader health impacts of coverage loss. Among those who became uninsured after losing Medicaid:
75% reported worrying about their physical health
60% worried about their mental health
56% said they skipped or delayed getting needed health care services or prescription medications
Impact on HIV Care and Policy Implications
The Medicaid unwinding process also highlighted significant challenges in maintaining healthcare access for people living with HIV (PLWH). While specific data on Medicaid disenrollment among PLWH during the unwinding were limited, general trends among vulnerable populations indicated potential risks. A KFF report found that many of those who lost Medicaid coverage experienced increased out-of-pocket costs, interruptions in medication adherence, and deteriorating health outcomes. These challenges were particularly critical for PLWH, for whom continuous access to antiretroviral therapy (ART) is essential.
Key considerations for PLWH during the unwinding process included:
Continuity of ART: Ensuring uninterrupted access to antiretroviral medications is mandatory for maintaining viral suppression and overall health.
Role of Ryan White HIV/AIDS Program: This program played a critical role in filling coverage gaps, but it's not a substitute for comprehensive health insurance.
Targeted Outreach: Community-based organizations and AIDS Service Organizations (ASOs) were essential in providing specialized support and enrollment assistance to PLWH.
Data Collection: Improving data collection on Medicaid disenrollment rates among PLWH can inform targeted interventions and policy adjustments.
The unwinding process underscored the need for policies that safeguard continuous healthcare access for PLWH. Implementing strategies that address these specific needs can help prevent coverage disruptions and improve overall health outcomes for people living with HIV.
Economic Implications of the Unwinding Process
The Medicaid unwinding process had significant economic implications for patients, healthcare providers, and states. For people who lost Medicaid coverage, the consequences often included financial instability and increased medical debt. A study by the Urban Institute found that adults who experienced a gap in Medicaid coverage were more likely to report problems paying medical bills and to have medical debt.
Healthcare providers, particularly safety-net hospitals and community health centers, faced increased rates of uncompensated care as a result of the unwinding process. This strained their financial resources and potentially affected their ability to provide care to their communities. The Commonwealth Fund noted that increased uninsured rates could lead to higher healthcare costs in the long term due to delayed care and increased emergency room visits.
For states, the unwinding process presented complex economic challenges. As the enhanced federal matching rate provided during the pandemic phased out, many states grappled with increased administrative costs associated with the unwinding process. A report from the Brookings Institution highlighted that states faced a complex set of trade-offs as they navigated the unwinding process, balancing the need to control Medicaid spending with the imperative to maintain access to care for vulnerable populations.
The full economic impact of the unwinding process continues to unfold, with ongoing implications for state budgets, healthcare provider finances, and patient economic well-being. These insights will be important in shaping future Medicaid policies and developing strategies to mitigate economic challenges associated with coverage transitions.
Policy Recommendations and Best Practices
To address these challenges, several key strategies have been identified:
Streamlining Renewal Processes: Increasing ex parte (automated) renewal rates can reduce the burden on people and minimize procedural disenrollments. For instance, Louisiana achieved a 49% ex parte renewal rate by leveraging data from other public benefit programs and improving data matching processes.
Targeted Outreach: Conducting outreach to vulnerable populations, including communities of color and people with chronic conditions, can help reduce disenrollments. The Ohio Department of Medicaid partnered with community-based organizations for door-to-door outreach in areas with high procedural disenrollments.
Implementing Continuous Eligibility: Policies that provide 12-month continuous eligibility can stabilize coverage and reduce churn. Oregon implemented a two-year continuous eligibility policy for children under six.
Enhanced Federal Oversight: Strengthening monitoring and enforcement of federal requirements ensures state compliance. CMS should leverage new authorities to require corrective action plans from states with high procedural disenrollments.
Improving Data Collection: Robust data collection and timely reporting enable quick identification of problems. States should report disaggregated data on disenrollments by race, ethnicity, and other demographics to address disparities.
Leveraging Technology: Modernizing eligibility systems improves accuracy and efficiency. Implementing text messaging, email communication, and mobile-friendly online portals helps people update information and complete renewals more easily.
Expanding Presumptive Eligibility: Allowing qualified entities to make preliminary eligibility determinations provides temporary coverage while full applications are processed, ensuring continuous access to care.
Addressing Systemic Inequities and Long-Term Solutions
The unwinding process exposed systemic inequities within the healthcare system, particularly affecting communities of color and rural areas. Long-term solutions include:
Investing in Underserved Communities: Enhancing access to healthcare services in marginalized areas.
Improving Health Literacy: Providing education to help people understand their health coverage options and navigate the system.
Strengthening Social Safety Nets: Expanding programs that address social determinants of health, such as housing, nutrition, and transportation.
Without significant policy interventions, coverage losses could lead to worse health outcomes and increased disparities, as emphasized by the Urban Institute.
Conclusion
The Medicaid unwinding process revealed both challenges and opportunities in our healthcare system. It highlighted the need for more efficient, equitable, and resilient approaches to health coverage. Key lessons include the importance of streamlined processes, targeted outreach, and robust oversight.
Moving forward, policymakers, healthcare providers, and advocates must work together to implement solutions that ensure continuous, accessible care for all, especially vulnerable populations. This effort is not just about health policy—it's a matter of equity and human rights.
As we continue to navigate the evolving healthcare landscape, our goal should be to build a system that provides stable, continuous coverage and leaves no one behind. This commitment is essential for improving health outcomes, reducing disparities, and strengthening our nation's overall health infrastructure.
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.
Why Mental Health is Central to Ending the HIV Epidemic
Have you ever felt like you were living two lives—one presented to the world, while the other is buried under secrecy and shame? For many people living with or at risk of HIV, this dual reality is painfully familiar. World Suicide Prevention Day might trend on social media, but hashtags rarely touch on the quiet, insidious epidemic where HIV meets a mental health crisis that too often remains in the shadows.
We’ve made significant strides in treating HIV, but the virus isn’t the only battle. There’s another battle just as critical: the mental toll—the invisible wounds and lingering trauma often overlooked despite medical advances. And all the progress in the world won’t matter if we ignore the mental and emotional realities of those living with HIV. We need more than medicine—we need a mindset shift that sees mental health as equally important and valid as physical health.
It’s time to confront the deeper issues directly: the stigma, the trauma, the daily fears. We need a mental healthcare system that understands, listens, and treats the whole person—not just the virus. Until we address these challenges head-on, we aren’t truly ending the HIV epidemic.
Navigating Mental Health Challenges with HIV
Living with HIV is not solely a medical challenge; it is a continuous mental marathon. The numbers show that we’re dealing with more than just a virus. People living with HIV are 100 times more likely to die by suicide than other populations. Anxiety disorders affect 15.5% of people living with HIV, compared to 3.6% in the general population, and depression is 2 to 5 times more common. Even more concerning, up to 70% have experienced trauma—20 times the rate of the general population.
These numbers represent real people navigating complex challenges. While not every person living with HIV faces mental health issues, for many, these struggles are a significant part of their experience. As one researcher notes, "The significantly higher prevalence compared to the general population suggests that anxiety disorders are a critical global public health concern among people living with HIV, requiring urgent prevention and treatment efforts."
To fully understand the scope of these challenges, we must consider "weathering"—the cumulative wear and tear on the body and mind from chronic stress and adversity. Dr. Sannisha K. Dale explains that for people living with HIV, this process is worsened by relentless stigma, discrimination, limited access to resources, systemic inequities, and other enduring social barriers. Weathering isn’t just about feeling worn down; it accelerates aging in a very real, biological way, leading to more chronic illnesses, cognitive decline, and other issues that hit harder and sooner for people with HIV. Research in iScience shows this accelerated aging can start almost immediately—within three years of acquiring HIV—due to cellular changes that affect overall health.
And it’s not just biology. Behavior plays a significant role too. A study in Translational Psychiatry reveals that maladaptive coping mechanisms like smoking or substance use, often developed in response to constant adversity, can accelerate aging and complicate HIV management. This highlights the importance of addressing both psychological and behavioral factors in HIV care, not just the virus itself.
Take Malcolm, a 66-year-old who’s been living with HIV for 28 years. Despite his resilience, he faces daily struggles: managing not only his HIV but also high blood pressure, Type 2 diabetes, and the mental toll of juggling multiple health conditions. As he puts it, "I'm just happy to be here," but that statement carries the weight of a lifetime of survival amid a complex landscape of healthcare challenges, stigma, and aging with HIV. Malcolm’s experience highlights the compounded difficulties faced by many older adults with HIV, where trauma is often a chronic companion rather than a singular event.
His story reflects a broader pattern: trauma, whether from the loss of friends to the epidemic, ongoing health challenges, or societal discrimination, often persists and manifests as PTSD, depression, substance use, and other mental health struggles. As such, the need for comprehensive care that addresses both the psychological scars and the physical realities of living with HIV has never been more urgent.
As Dr. Dale puts it, "Systemic oppression and mental health struggles faced by people living with HIV throughout their lives may accelerate the aging process and continue to negatively impact their physical health and wellbeing as they age." This isn’t just a health crisis—it’s a call to fundamentally rethink how we approach care and compassion for those most affected, demanding action that is both immediate and transformative.
Understanding weathering in the context of HIV is critical to developing effective care strategies. Research from the HIV Vaccine Trials Network makes it clear: it’s not just about treating the virus; it’s about recognizing the full scope of what people are up against—mental health challenges, trauma, and social determinants of health. Only by addressing all these factors can we create interventions that truly support healthier aging and improve the quality of life for people living with HIV.
Why Mental Health is Key to Effective HIV Care
Mental health and HIV care are inextricably linked, with research showing that untreated mental health conditions can significantly undermine adherence to antiretroviral therapy (ART), complicating efforts to achieve viral suppression and maintain overall health. The Substance Abuse and Mental Health Services Administration (SAMHSA) highlights this connection, stating, "Untreated behavioral health conditions can significantly hinder HIV care engagement, medication adherence, and overall health outcomes."
Yet, accessing mental healthcare while living with HIV is often a challenge. Limited services, cultural gaps among providers, and pervasive stigma are just some of the hurdles. This is compounded by a fragmented healthcare system that treats HIV care and mental health services separately. To address these gaps, we need to urgently improve provider education and competency in addressing both HIV and mental health needs. The World Health Organization and UNAIDS advocate for integrating mental health and HIV care. Their call for a holistic approach goes beyond just medical checklists—it’s about addressing psychological and social factors too. Integrated care models have shown promise, improving both mental health outcomes and adherence to HIV treatment.
Studies have shown that integrating mental health services into HIV care can significantly improve outcomes. This approach has been shown to reduce depressive symptoms by 25-50%, enhance adherence to antiretroviral therapy (ART), and increase the rates of viral suppression up to 95%. Collaborative care models, where mental health professionals and HIV providers work together, have proven effective in reducing hospitalizations, improving patient engagement, and promoting overall better health for people living with HIV.
However, getting there isn’t easy. SAMHSA's Center for Integrated Health Solutions identifies big hurdles, like funding limitations, workforce shortages, and resistance to organizational change. Despite these challenges, integrated care remains a critical goal—one that could significantly improve the health and well-being of people living with HIV.
And we can't ignore the impact of stigma. The Well Project notes that stigma in healthcare settings can worsen trauma and deter people from seeking care. Training providers in trauma-informed care and cultural competency is essential to creating safe, inclusive spaces for people living with HIV.
How Politics and Society Shape the HIV Experience
The mental health of people living with HIV is profoundly influenced by the broader social and cultural context in which they live. Systemic stigma, discrimination, and social exclusion intersect with issues like racism, homophobia, transphobia, and economic inequality, creating significant barriers to care and support. Research published in the American Journal of Public Health illustrates how these overlapping forms of discrimination increase stress, social isolation, and complicate access to healthcare. The study presents a framework demonstrating how HIV-related stigma, when combined with other forms of social marginalization, can negatively impact treatment adherence and overall health outcomes for people living with HIV.
HIV criminalization laws are another piece of this complex puzzle. As highlighted by Xtra Magazine, Canada and the U.S. still lead the world in criminalizing HIV, perpetuating stigma and further alienating those affected. Furthermore, the World Health Organization notes that discriminatory policies in employment, housing, and education create additional barriers, directly impacting mental well-being. Media and entertainment also plays a critical role. Sensationalized coverage and inaccurate portrayals continue to fuel harmful stereotypes, adding to the stigma people living with HIV experience.
Cultural and religious beliefs in certain communities can further exacerbate HIV-related stigma, leading to isolation, rejection, or even violence. UNAIDS emphasizes the importance of addressing these deeply ingrained attitudes.
However, positive messaging also has the power to reshape perceptions. The Undetectable = Untransmittable (U=U) campaign is a key example. HIV.gov explains that effective ART leading to undetectable viral loads prevents transmission, challenging outdated misconceptions and empowering those living with HIV.
This messaging has made a significant impact. Research has shown that U=U reduces anxiety and changes perceptions, helping people with HIV feel less like a threat. Similarly, PrEP (pre-exposure prophylaxis) offers another powerful tool, proving highly effective in preventing HIV transmission and fostering open, honest conversations about sexual health.
Building Resilience: Strategies for Mental Wellness
Supporting the mental health of people living with or at risk of HIV means thinking beyond a one-size-fits-all approach. We need to tackle this from multiple angles. Integrated care models that combine mental health and HIV services are proving to be effective. Programs like the Collaborative Care Model and the Mental Health Integration Programme show how treating the whole person—not just the virus—leads to better outcomes.
Trauma-informed care is crucial for creating environments where people feel truly safe and supported. This means training healthcare workers in sensitive communication, empowering patients in their care, and recognizing how trauma affects health behaviors and outcomes.
Monte Ephraim, a clinical social worker, sums it up: “Everyone has the possibility of living a satisfying and meaningful life, regardless of what happened to them or what health challenges they are living with.” Their approach centers on acknowledging trauma, promoting healing through relationships, and building resilience.
Community-based organizations are also vital. They offer support groups, peer counseling, and advocacy, using the power of shared experiences to reduce isolation and build resilience. For people living with HIV, resilience isn’t just a buzzword—it’s a lifeline. Research highlights that engaging in helpful coping mechanisms, like relying on social support, spirituality, creative expression, and activism can improve resilience. Practices like mindfulness, stress reduction, and positive psychology can also help. Each person’s way of coping will differ, and that’s perfectly fine. What’s important is finding what brings peace and comfort, in whatever form that takes.
Moving Forward: A Call to Action
If we’re serious about ending the HIV epidemic, we have to face the reality that mental health isn’t just part of the equation—it’s central to it. This isn’t a side issue or an optional extra. It's a fundamental piece of the puzzle that must be integrated into every aspect of HIV care and prevention.
To make progress, we need a strong commitment from all fronts—policymakers, healthcare providers, and communities:
Policymakers: Fund mental health services, integrate mental health care into all HIV programs, mandate trauma-informed training, and address social determinants of health.
Healthcare Providers: Implement trauma-informed approaches, conduct routine mental health screenings, and build strong referral networks.
Communities: Challenge stigma, support local organizations, and advocate for policy changes that promote mental health and HIV care.
We’re not just fighting a virus; we’re fighting for the dignity, health, and well-being of people living with HIV. This battle calls for a holistic, compassionate approach that treats the whole person—mind and body. It’s about creating a healthcare system that goes beyond the virus to address the real, lived experiences of those affected.
By integrating mental health care, tackling stigma, and fostering supportive communities, we can help ensure a future where people living with HIV not only survive but thrive. Let’s not just aim for zero new transmissions or deaths; let’s strive for a world where every person living with HIV is valued, empowered, and has the chance to live their fullest life.
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:
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.
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.
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.
Equitable and Data-Driven Viral Hepatitis Quality Measures
Viral hepatitis remains a significant public health threat in the United States, affecting approximately 3.3 million people with chronic hepatitis B and C infections. In 2021, there were 12,715 reported cases of chronic hepatitis B (HBV) and 117,105 reported cases of chronic hepatitis C (HCV). Despite the availability of effective treatments, these infections disproportionately impact marginalized communities, including people who inject drugs, those experiencing homelessness, and Black and Indigenous populations. This reality underscores the urgent need for a comprehensive and equitable approach to viral hepatitis care.
Recognizing this challenge, the U.S. Department of Health and Human Services’ (HHS) Office of Infectious Disease and HIV/AIDS Policy (OIDP) has issued a call for public comment on proposed viral hepatitis quality measures for Medicaid. This initiative, aimed at supporting the nation's goal of eliminating viral hepatitis by 2030, focuses on a crucial measure: hepatitis C screening and treatment initiation.
OIDP's call for public comment presents a critical opportunity to advance health equity, strengthen data-driven decision-making, and foster collaboration to accelerate progress towards eliminating viral hepatitis as a public health threat. Engaging in this process is essential for ensuring that the final measures effectively address disparities, improve care, and ultimately save lives.
The Landscape of Disparities and the Need for Action
The urgency for action is amplified by the significant disparities that exist in HCV care. Research consistently demonstrates that Black, Indigenous, and people of color, as well as those with lower socioeconomic status, face significant barriers to timely diagnosis and treatment. A study of Medicare beneficiaries found that while disparities in Direct-Acting Antiviral (DAA) use between Black and White patients narrowed by 2016, socioeconomic disparities persisted, with those receiving a Part D low-income subsidy less likely to access these life-saving medications. As the researchers noted, "DAA use among Medicare patients remained far below the level needed to eradicate HCV. The black-white gap in HCV treatment was closed by 2016, but disparities by patient socioeconomic status remained."
These disparities are deeply intertwined with social determinants of health. Factors such as poverty, limited access to healthcare, inadequate transportation, and low health literacy create significant obstacles to receiving quality HCV-related care. As one study aptly pointed out, "A variety of elements contribute to lower quality of care in rural areas, including shortages of medical equipment and services, poor health literacy, lack of transportation, and travel time and long distances."
Quality measures offer a vital tool for dismantling these barriers and fostering health equity. By tracking screening rates, treatment initiation, and outcomes across different populations, quality measures can illuminate where disparities exist and guide targeted interventions. They provide a data-driven framework for holding healthcare systems accountable for providing equitable care and for measuring progress towards eliminating viral hepatitis.
Analyzing the Proposed Measures
At the heart of OIDP’s proposal lies the HCV screening and treatment initiation measure. This measure, designed to track the percentage of Medicaid beneficiaries who receive both timely screening and treatment for HCV, is structured with a clear numerator and denominator. The numerator encompasses those Medicaid members who are screened for HCV and, if diagnosed, initiate treatment within a specified timeframe. The denominator includes all adult Medicaid enrollees within a defined age range, excluding those with evidence of Medicare or third-party insurance coverage.
This measure, viewed through an equity lens, holds immense potential for dismantling the barriers that prevent marginalized communities from accessing life-saving HCV care. By promoting universal screening, the measure encourages a proactive approach to diagnosis, reaching people who might otherwise remain unaware of their infection until they experience serious complications. Furthermore, the focus on timely treatment initiation is crucial for addressing disparities in treatment access. By tracking this metric, healthcare systems can be held accountable for ensuring that all patients diagnosed with HCV receive prompt and effective treatment, regardless of their background or socioeconomic status.
The transcript from HHS’s Viral Hepatitis Quality Measures Technical Consultation Meeting provides compelling insights into how similar measures have been leveraged at the state level to advance health equity. Dr. Su Wang, a clinician and advocate deeply involved in hepatitis care, shared her perspective, stating, "We really believe, those of us who have been doing this clinical work and also advocacy work, that quality metrics can really help us achieve hepatitis elimination by 2030." This sentiment is echoed by the experiences of states like Michigan, which has implemented a suite of HCV quality measures, including those focused on screening during pregnancy and medication adherence. These measures have not only helped Michigan track progress towards elimination but have also provided valuable data for identifying and addressing disparities in care.
Data Considerations
The success of this measure hinges on the feasibility of data collection and the robustness of the data sources used. While claims data, readily available through Medicaid programs, offer a practical starting point for tracking screening and treatment initiation, this source has limitations. Claims data primarily capture billing codes, which may not fully reflect the nuances of clinical encounters or capture social determinants of health that influence care access.
Electronic Health Record (EHR) data, on the other hand, hold a wealth of clinical information that can provide a more comprehensive picture of patient care. As noted during the technical consultation meeting, "There's a lot more information, digitally available through EHRs, health information exchanges, etc. that are readily available and allows us to get closer to real-time measurement and response." Leveraging EHR data could enhance the measure's accuracy and timeliness, enabling more rapid identification of disparities and interventions. However, widespread use of EHR data for quality measurement faces challenges, including variations in EHR systems, interoperability issues, and privacy concerns.
Additionally, capturing the influence of social determinants of health requires going beyond traditional clinical data sources. Integrating data from community organizations, social service agencies, and patient surveys could provide valuable insights into the social and economic factors that shape health outcomes. This multifaceted data approach, while complex, is essential for developing a truly equitable and effective hepatitis C quality measure.
Collaborative Action
The successful implementation of the HCV quality measure demands a collaborative approach that transcends traditional silos and brings together a diverse array of stakeholders. Public health agencies, Medicaid programs, healthcare providers, community organizations, and, most importantly, patients themselves must be actively engaged in the process.
The transcript from the technical consultation meeting showcases inspiring examples of collaborative action from states at the forefront of viral hepatitis elimination efforts. In Pennsylvania, the Department of Human Services (DHS) and the Department of Health (DOH) forged a strong partnership to drive their elimination plan, recognizing the critical role of Medicaid in reaching those most impacted by HCV. As Lauren Orkis, HBV supervisor at the Pennsylvania DOH, emphasized, "Our Medicaid partners are absolutely critical in our elimination planning efforts, statewide. So we made the partnerships strong between DHS and DOH in Pennsylvania from the get-go as we got our elimination plan underway."
Similarly, Washington State's Bree Collaborative, a legislatively mandated group focused on quality improvement for Medicaid, exemplifies the power of multi-stakeholder engagement. This collaborative, which includes representatives from various sectors, has been instrumental in developing and recommending quality measures for a range of health issues, including HCV. By bringing diverse perspectives to the table, these collaborative models foster innovation, ensure buy-in from key stakeholders, and pave the way for effective implementation.
Conclusion
OIDP's call for public comment on proposed viral hepatitis quality measures presents a defining moment in the fight against this silent epidemic. By engaging in this process, we have the power to shape measures that not only track progress but also drive meaningful change, reduce disparities, and improve the lives of millions. Let us seize this opportunity to advocate for equity, data-driven decision-making, and collaborative action.
Submit your comments, raise your voice, and join the movement to eliminate viral hepatitis. Together, we can ensure that quality measures become powerful tools for achieving health equity and creating a future where viral hepatitis is no longer a threat to our communities. The path to elimination is within reach, and quality measures, shaped by our collective voice, can light the way.
Upholding Our Ethical, Moral, and Bipartisan Commitment to HIV/AIDS
"Where your treasure is, there your heart will be also."
These words from Jesus found in Matthew 6:21 resonate profoundly as we examine the current legislative actions on HIV/AIDS funding in the U.S. Congress. It is hard to imagine forty years into the epidemic that we’d be witnessing a systemic attack on numerous HIV-related programs, especially ones with proven track records of success. The House L-HHS Appropriations Bill (H.R. 5894), proposing a staggering $767 million in cuts to domestic HIV programs, starkly contradicts the values of compassion and faith professed by certain lawmakers. These cuts, detailed by the AIDS Budget and Appropriations Coalition (ABAC), threaten to dismantle decades of public health progress, disproportionately impacting marginalized communities, minorities, and the LGBTQIA+ community. The appropriations bill is only the tip of the iceberg.
The irony of these legislative actions is both profound and deeply troubling. Lawmakers, often vocal about their 'pro-life' stance, are endorsing policies that will cause significant harm to millions of Americans dependent on HIV services. This bill represents more than just fiscal adjustments; it's a direct attack on the services and supports afforded to people living with HIV (PLWH), reflecting a worldview that stigmatizes and punishes rather than supports and heals. This approach starkly betrays the bipartisan legacy of the HIV/AIDS fight, which brought together the ideological opposites of the late Senators Orrin Hatch (R-UT) and Edward Kennedy (D-MA).
The bill's proposed eliminations include funding for the bipartisan Trump-era Ending the HIV Epidemic Initiative, the Ryan White HIV/AIDS Program, and the Community Health Centers Program. Alarmingly, it suggests completely eliminating Part F of the Ryan White HIV/AIDS Program (RWHAP), which supports critical components like Dental Programs and AIDS Education and Training Centers. Additionally, the bill proposes a 53% cut in the Minority HIV/AIDS Fund and the total elimination of Minority AIDS Initiative funding within the Substance Abuse and Mental Health Services Administration.
But the attack isn’t exclusive to domestic programs combating HIV/AIDS.
The stalemate over the reauthorization of the U.S. President's Emergency Plan for AIDS Relief (PEPFAR), as highlighted in a recent POLITICO article, further exemplifies the moral failure of the Freedom Caucus – which is driving most of the vitroil behind these proposed cuts. Disputes over abortion and a blatantly bigoted reluctance to aid Africa have jeopardized the most successful global health initiatives of our time.
“I’m disappointed,” Rep. Michael McCaul (R-Texas) told POLITICO. “Honestly, I was looking forward to marking up a five-year reauthorization, and now I’m in this abortion debate.” Additionally, he said, “a lot of the Freedom Caucus guys would not want to give aid to Africa.”
Jen Laws (he/him/his), President & CEO of the Community Access National Network (CANN), poignantly captures this duplicity in a tweet: “HIV is a bipartisan issue and always has been. May those who wish to insert their culture war politics onto this historical space enjoy their moral rot for as long as the spotlight lasts because the sense of power certainly won't.”
We stand at a critical crossroads, not merely facing a policy challenge but a profound moral crisis. The battle against HIV/AIDS reflects our societal values of empathy, compassion, and collective responsibility. The proposed cuts and the deadlock over PEPFAR reauthorization challenge the very foundations of equity and justice, calling for a decisive response to maintain the fragile progress made in HIV/AIDS care and prevention. These cuts are not distant policy changes; they are immediate threats to lives and well-being, demanding our urgent attention and action.
Critical Juncture
RWHAP and PEPFAR stand at a critical juncture, pivotal to the global and domestic response to HIV/AIDS. The Ryan White Program, a testament to America's commitment to combating HIV/AIDS, is under threat from the proposed House L-HHS Appropriations Bill (H.R. 5894), which includes significant funding cuts. Concurrently, PEPFAR, a global beacon in the fight against HIV/AIDS and the largest commitment by any nation to address a single disease, faces legislative hurdles that could impede its future effectiveness.
The Ryan White Program has been a cornerstone in achieving a 90% viral suppression rate among its clients, as reported by the Health Resources and Services Administration (HRSA). PEPFAR, on the other hand, has been instrumental in saving 25 million lives and supporting over 5 million infants born HIV-free, providing antiretroviral treatment to over 20 million people across 55 countries. This program has played a crucial role in significantly reducing new HIV infections worldwide.
The potential funding cuts under H.R. 5894 pose a severe risk to the Ryan White Program's continued success in the United States, especially in light of the 12% decline in new HIV infections from 2017 to 2021. The reauthorization stalemate of PEPFAR underscores the moral failure of certain lawmakers, who, despite their 'pro-life' claims, are obstructing a program that has been a lifeline for millions globally.
Comprehensive Strategy is Key
The achievements made over the last four decades in the fight against HIV/AIDS underline the necessity of a comprehensive strategy. The increase in PrEP prescriptions in the United States and the high rate of viral suppression achieved through treatment as prevention exemplify the effectiveness of a holistic approach, encompassing treatment, prevention, care, and support services. It is crucial that policymakers and the public recognize the importance of these programs and advocate for their continued support, ensuring the progress in combating HIV/AIDS is not only maintained but also advanced. Time is of the essence to embrace and implement a comprehensive HIV/AIDS strategy that goes beyond mere treatment to encompass prevention, care, and support.
Challenging Extremism and Fostering Advocacy
The battle against H.R. 5894 transcends mere policy disagreements. It represents a stand against a form of political extremism that poses a grave threat to marginalized populations, including people living with HIV/AIDS. These proposed cuts, in stark contrast to the proclaimed pro-life stance of the very lawmakers pushing them, unveil a troubling hypocrisy reminiscent of the words of Jesus in Matthew 23:27-28: "Woe to you, teachers of the law and Pharisees, you hypocrites! You are like whitewashed tombs, which look beautiful on the outside but on the inside are full of the bones of the dead and everything unclean."
Just as Jesus admonished the outwardly righteous but inwardly corrupt, these policies, under the guise of fiscal prudence, risk causing significant harm to the most vulnerable, particularly PLWH, minorities, and the LGBTQIA+ community. The stark contrast between the proclaimed values and the actual legislative actions of these lawmakers echoes the biblical warning against such duplicity. The time to stand against this political extremism is now. We cannot afford to be bystanders as these policies threaten to unravel decades of progress.
A Resounding Call to Action:
This critical juncture calls for a united, nonpartisan response from all who value public health, health equity, and human dignity. Health and human dignity are not political weapons to be wielded in service of talking points when lives hang in the balance. We urge individuals and organizations across the political spectrum to join the Southern AIDS Coalition in their efforts to push back against these cuts by signing their letter. Your voice and actions are crucial in shaping the future of HIV/AIDS policy and ensuring our continued progress towards Ending The Epidemic.
There are easy to use tools to contact your congressional representation in Congress. Not sure of your congressional district or who your member of the U.S. House of Representatives is? This service will assist you by matching your ZIP code to your congressional district, with links to your member's website and contact page. Or complete this online form to find your two U.S. Senators.
Now is the time to reaffirm our bipartisan commitment to fighting HIV/AIDS. This battle is not just about preserving past achievements; it is about resolutely advancing our collective efforts against HIV/AIDS. Your involvement is not just beneficial; it is essential. By standing together, regardless of political affiliation, we can overcome these challenges and continue our journey towards a world free from HIV/AIDS. Act now, for this fight is about life, justice, and human dignity. Your voice and action are indispensable in this crucial hour.
The Congenital Syphilis Crisis
At the turn of the century, the United States was nearing elimination of syphilis. However, in the 23 years since then, congenital syphilis has alarmingly resurfaced, revealing significant vulnerabilities in our healthcare system. Highlighted by a newly released Centers for Disease Control and Prevention (CDC) report, syphilis’ resurgence is a critical public health concern demanding immediate and comprehensive action.
The Escalating Crisis
Since 2017, recent CDC data indicates a dramatic 75% increase in syphilis cases in the United States, with congenital syphilis cases tripling in the same timeframe. In 2020, 2,148 newborns were affected, a jump from 1,870 in 2019. This worrying trend extends globally, as a Lancet study corroborates, and the World Health Organization (WHO) estimates nearly 1 million annual congenital syphilis cases worldwide. These cases often result in severe outcomes, including stillbirths, neonatal deaths, and lifelong health complications.
The surge in congenital syphilis necessitates a critical examination of its root causes, including inadequate prenatal care, healthcare access barriers, and insufficient sexual education.
Integrated Response to Syphilis Resurgence
The re-emergence of syphilis is deeply rooted in social and healthcare dynamics and exacerbated by the COVID-19 pandemic. This situation calls for an integrated response from the medical community and society as a whole, addressing both the underlying factors and the immediate challenges.
The CDC has identified significant disparities in syphilis rates among Native American, Native Hawaiian, Pacific Islander, and Black populations. These disparities are linked to broader social determinants of health, which have been further strained by the COVID-19 pandemic, as noted by the American Journal of Public Health. The pandemic's impact on healthcare services has led to increased sexually transmitted infection (STI) rates, including syphilis, due to reduced healthcare access.
Challenges and Care in Syphilis Prevention and Treatment
The medical community, including the Health Resources and Services Administration (HRSA) and dermatologists as discussed in JAMA Dermatology, plays a crucial role in addressing the syphilis epidemic. Their efforts are key to bridging healthcare access gaps and tackling systemic challenges. However, these initiatives are hindered by significant hurdles, such as medical resource shortages, emphasizing the need for a sustained, integrated approach to this public health crisis.
A major challenge is the shortage of Bicillin L-A, the primary treatment antibiotic, as highlighted by The New York Times. This shortage, caused by increased demand and manufacturing constraints, poses a significant risk, especially for pregnant women and birthing persons, and necessitates alternative strategies and early intervention to prevent mother-to-child transmission.
Coordinated Multi-sector Response
Recognizing these challenges, the medical community, led by organizations like the National Association of County and City Health Officials (NACCHO), is advocating for a coordinated response. This approach involves:
Rapid Testing and Treatment: Prioritizing rapid syphilis testing for pregnant women and birthing persons, especially in underserved areas, to prevent congenital syphilis.
Educational Campaigns: Launching culturally sensitive educational campaigns about prenatal care and regular syphilis testing during pregnancy.
Enhanced Prenatal Care Access: Expanding access to quality prenatal care, integrating routine syphilis testing into prenatal check-ups, and ensuring affordable treatment options.
Policy and Funding Support: Advocating for increased funding and policy support to enhance resources for syphilis testing, treatment, and prenatal care services.
Community Engagement and Education
To effectively combat the resurgence of syphilis, a multifaceted community engagement and education strategy is essential. This approach should encompass:
Integrated Awareness Initiatives: Implement targeted campaigns across diverse platforms to educate on syphilis risks, prevention, and treatment. These should be inclusive, culturally sensitive, and utilize local media, social platforms, and community events for maximum reach and impact.
Collaborative Community Leadership and Healthcare Partnerships: Engage community leaders, influencers, and healthcare providers in a collaborative effort. This includes disseminating information, advocating for prevention and treatment, and organizing educational workshops and seminars. These partnerships are vital for credibility and creating effective referral systems for medical consultation or treatment.
Enhanced Comprehensive Sex Education: Strengthen sex education programs in schools and community centers, covering all aspects of sexual health. This should include STI prevention, contraception, and healthy relationships, tailored to be culturally sensitive and inclusive.
Active Community Involvement and Feedback: Encourage community feedback and involvement in the planning and implementation of syphilis education and prevention programs. This ensures the initiatives are relevant, effective, and address specific community needs.
The Role of Sex Education in Preventing Congenital Syphilis
Comprehensive sex education is a pivotal element in combating congenital syphilis. This education equips people with essential knowledge and tools for informed decisions about sexual health, playing a critical role in STI prevention, including syphilis.
Key Insights and Evidence:
Gap in Education and Its Consequences: Reports from sources like NPR and the Texas Tribune highlight the link between the rise in congenital syphilis and inadequate sex education. This gap, which is especially pronounced in resource-limited areas, leaves many, particularly adolescents and young adults, vulnerable due to a lack of essential sexual health knowledge.
Societal and Cultural Barriers: Cultural stigmas and taboos, as discussed in BBC Future, often impede the implementation of comprehensive sex education, leading to misinformation and increased STI risks.
Supporting Data for Comprehensive Education:
◦ The American College of Obstetricians and Gynecologists (ACOG) and studies in the Journal of Adolescent Health underscore the effectiveness of comprehensive sex education in reducing risky behaviors and STI rates.
◦ Research from PubMed Central and the Guttmacher Institute links inadequate sex education to higher STI and unintended pregnancy rates, advocating for inclusive and comprehensive programs.
Importance of Cultural Sensitivity: Studies emphasize the need for culturally sensitive and inclusive sex education, which has been shown to positively impact sexual behavior and contraception use among adolescents.
Policy, Public Health, and Community Approach to Syphilis
The fight against the syphilis epidemic necessitates a unified approach, combining policy initiatives, public health strategies, and community involvement. Central to this effort is the Pasteur Act, reintroduced in Congress to foster antibiotic research and development, a critical step in combating drug-resistant pathogens and diseases like syphilis. This act also highlights the need for equitable access to treatments, particularly for marginalized communities disproportionately affected by congenital syphilis.
Focused Policy and Public Health Efforts:
Support for the Pasteur Act: Advocacy for this act is crucial to stimulate antibiotic innovation and ensure the availability of new treatments for those in need, particularly in underprivileged communities.
Increased Funding for Public Health Campaigns: Investing more in public health campaigns is essential to educate high-risk communities about syphilis prevention and treatment.
Strengthening Healthcare Systems: There's a pressing need to enhance healthcare infrastructure, especially in areas lacking adequate medical resources, to manage the rising cases of congenital syphilis.
Ensuring Equitable Healthcare Access: Policies should aim to provide universal access to quality healthcare, including STI testing and treatment, with a focus on reaching marginalized groups.
Community and Healthcare Provider Engagement:
Healthcare Providers' Role: Emphasizing prenatal care and routine syphilis testing for pregnant women and birthing persons during every patient encounter is critical to prevent the transmission of syphilis to newborns.
Community Involvement: Supporting comprehensive sex education and advocating for the destigmatization of sexual health are essential. Communities and individuals should be encouraged to practice regular testing and safe sex.
This collective effort, integrating medical, educational, and policy measures, is vital to significantly reduce the incidence of congenital syphilis. By working together, we can protect future generations and address the broader aspects of this public health challenge.
For more information, the CDC's congenital syphilis fact sheet provides detailed insights into prevention strategies and the impact of the disease.
Unveiling Disparities: OIG Report on HIV Care in Medicaid
A recent report by the U.S. Department of Health & Human Services’ (HHS) Office of Inspector General (OIG) unveiled a startling revelation: one in four Medicaid enrollees with HIV may not have received critical services in 2021. At a time when healthcare systems worldwide were grappling with the COVID-19 pandemic, these findings highlight the compounded struggles faced by People Living with HIV (PLWH) in accessing essential care.
Beyond safeguarding the health of PLWH, viral suppression plays a pivotal role in curbing HIV transmission, a critical metric in the public health effort to end HIV. In alignment with HHS guidelines, achieving consistent viral suppression necessitates three foundational elements: routine medical consultations, ongoing viral load assessments, and unwavering commitment to ART regimens.
Unveiling the Care Gaps
The OIG's analysis reveals pressing challenges within our system:
Out of the 265,493 Medicaid enrollees diagnosed with HIV, a startling 27% were missing evidence of receiving at least one of the pivotal services last year.
10% were missing evidence of medical visits, and 11% were missing evidence of an ART prescription, raising concerns around disease progression and higher incidence of AIDS diagnosis, increased risk of transmitting the virus, and developing antiviral resistance.
The most pronounced gap? Viral load tests. A staggering 23% of enrollees lacked evidence of even a single viral load test in 2021. This absence not only impedes clinicians from making informed decisions but also hampers our collective ability to monitor and respond to the evolving nature of the HIV epidemic.
Perhaps most concerning is the fact that more than 11,000 of these enrollees didn't have evidence of availing any of the three critical services. This is not just a statistic; it's a reflection of real individuals, facing amplified health risks due to system inadequacies.
Jen Laws, CANN's President and CEO, poignantly remarked, "Medicaid represents the greatest public program coverage of PLWH. It also represents the greatest public program coverage of people at risk of acquiring HIV. Medicaid compliance and efficacy is critical to Ending the HIV Epidemic and this report has identified gaps where states have failed to meet their obligations to Medicaid beneficiaries and where CMS has failed to ensure compliance. We must do better if we are going to reach our public health goals."
The report underscores stark disparities in care access between Medicaid-only and dual-eligible enrollees (those with both Medicaid and Medicare). Specifically, Medicaid-only enrollees were three times more likely to lack evidence of any of the three critical services compared to dual-eligible enrollees, with 6% of Medicaid-only enrollees missing out, as opposed to just 2% of the dual-eligible group. Such disparities might stem from various factors, including Medicare's higher fee-for-service rates and the observed long-standing adherence patterns among older adults who have had HIV for prolonged periods.
State-wide Disparities: A Complex Landscape
The disparities in HIV care access across states offer both a grim reality check and a clarion call for systemic reform. Drawing from the OIG report, certain states, notably Arizona, Arkansas, the District of Columbia, and Utah, have alarmingly high proportions of Medicaid-only enrollees without evidence of at least one of the three critical services. For instance, Utah stands out with a staggering 87% of such enrollees missing out on essential care. These aren't just numbers; they represent real individuals grappling with a system that's failing them.
Conversely, some states demonstrate better compliance and efficacy in delivering HIV care, which suggests potential models or strategies that could be emulated across the board. However, the stark variability across states points to the undeniable influence of state-specific policies, the quality of local HIV care infrastructures, and broader challenges associated with healthcare access.
State agencies clearly have much work ahead. These disparities not only indicate potential inefficiencies or gaps in policy implementation but also suggest a pressing need for introspection and reform at the state level. Coupled with challenges in the broader Medicaid system, there's a compelling case for a comprehensive overhaul.
The onus is on both state agencies and the Centers for Medicare & Medicaid Services (CMS) to rise to the occasion. The disparities, as evidenced in the report, necessitate a deep dive to understand the underlying causes. Is it a matter of policy misalignment, funding constraints, administrative challenges, or a combination thereof?
For instance, the significant variation in care access among dual-eligible enrollees, ranging from 9% to 53% across states, speaks volumes about the discrepancies in policy implementation and oversight. It's vital to pinpoint these issues, develop tailored interventions, and ensure that every Medicaid enrollee, irrespective of their state, receives the essential services they need.
The Pandemic's Shadow
The COVID-19 pandemic exerted immense pressure on healthcare systems, with profound implications for HIV care. The OIG report highlights the challenges faced by Medicaid enrollees with HIV during the COVID-19 pandemic. A significant finding from the report is the notable deficiency in viral load tests among these enrollees. This underscores the need for healthcare systems to effectively manage and prioritize essential services, even amidst broader healthcare crises. The report serves as a reminder of the importance of consistent and uninterrupted care for conditions like HIV, even when healthcare systems face external pressures.
Steering Towards a Brighter Future
Addressing the glaring disparities laid out in the OIG report goes beyond mere policy recalibration; it challenges our collective resolve to uphold equitable healthcare. In the shadow of the pandemic's aftermath, it's imperative that essential services for PLWH are not just nominally available but are genuinely accessible.
The OIG report's findings don't merely spotlight discrepancies; they highlight systemic lapses. States have fallen short in fulfilling their obligations to Medicaid beneficiaries, and the CMS has not adequately ensured compliance.
To translate this call to action into meaningful change, it's essential to:
Strengthen state-level accountability frameworks to ensure Medicaid obligations are met comprehensively, particularly among states utilizing Managed Care Organizations – ensuring those contracted for-profit insurance companies are meeting their contractual obligations to states. The tools for accountability already exist within these contracts, they merely must be used.
Bolster CMS oversight mechanisms, driving proactive interventions that hold states to account and rectify compliance lapses.
Engage in continuous dialogue with stakeholders, including healthcare providers and beneficiaries, to identify and remedy bottlenecks in care access.
The findings from the OIG report serve as a stark reminder of the work ahead. As Jen Laws aptly states, "We must do better." HIV advocates should consider assessing our engagement with their state Medicaid programs and look for opportunities to act, akin to our engagement Ryan White programs. With concerted efforts, policy reforms, and collective commitment, we can bridge the gaps and ensure comprehensive care for all PLWH.
DEA Appears Open to Tele-Script for Certain Controlled Substances
On August 7th, the Drug Enforcement Agency (DEA) issued a notice of meeting regarding telemedicine prescription of certain controlled substances (Schedule II only). The meeting(s) will be conducted as “listening sessions”, conducted Tuesday, September 12th, and Wednesday, September 13th from 9 a.m. to 5:30 p.m. at the DEA Headquarters (located at 700 Army Navy Drive, Arlington, VA). Participants must pre-register using this link, before or on August 21st. In-person requests will be granted via lottery and the sessions will be live-streamed. Similarly, those wishing to provide limited oral presentation, either in-person or via live-stream must also fill out the form. Again, these will be selected by DEA personnel based upon quality of summary of presentation. Presentations may be made by anyone with an interest in and expertise in the subject matter. The DEA has asked for feedback on the following questions:
If telemedicine prescribing of schedule III–V medications were permitted in the absence of an in-person medical evaluation, what framework, including safeguards and data, with respect to telemedicine prescribing of schedule III–V medications do you recommend to help DEA ensure patient safety and prevent diversion of controlled substances?
Should telemedicine prescribing of schedule II medications never be permitted in the absence of an in-person medical evaluation? Are there any circumstances in which telemedicine prescribing of schedule II medications should be permitted in the absence of an in-person medical evaluation? If it were permitted, what safeguards with respect to telemedicine prescribing of schedule II medications specifically would you recommend to help DEA ensure patient safety and prevent diversion of controlled substances?
If practitioners are required to collect, maintain, and/or report telemedicine prescription data to DEA, what pieces of data should be included or excluded? What data is already reported to federal and state authorities, insurance companies, and other third parties?
If pharmacies are required to collect, maintain, and/or report telemedicine prescription data to DEA, what pieces of data should be included or excluded? What data is already reported to federal and state authorities, insurance companies, and other third parties?
The listening sessions come as a direct result of the DEA receiving truly unprecedented responses to proposed rules published in March, in anticipation of the end of the COVID-19 public health emergency, and, thus, the DEA’s telemedicine waiver issued at the beginning of the COVID-19 pandemic. In all, the DEA received almost 40,000 comments across the proposed rules with much focus on the General Telemedicine proposed rule. We covered the content of those rules (and why they were a step backward as written) in March. In particular, we expressed concern over returning to pre-pandemic limitations on telemedicine when the pandemic-related waiver did not prove any spike in diversion and did, indeed, improve access to medication assisted substance use treatment for many patients. Along similar lines, because testosterone is considered a controlled substance, such a return at the height of bias-driven, state-based legislation limiting access to certain gender affirming care would have a disproportionately harmful impact among transgender men and undermine President Biden’s commitment to combat these hateful efforts.
The relationship between the DEA and harm reduction advocates has been long and fraught. Many harm reduction advocates criticize the role of law enforcement’s actions, particularly that law enforcement agency, working against best practices in public health, even those best practices recognized by federal public health agencies. For example, a couple of weeks ago, we highlighted the Substance Abuse Mental Health Administration’s document (currently open to public comment) aimed at formalizing certain policy positions, entitled Harm Reduction Framework. Nowhere in the “framework” is the conflict with law enforcement positions addressed.
Putting more pressure still on the DEA’s absolute refusal to meet its commitment from 2009 to introduce meaningful telemedicine rules (in response to passage of the Ryan Haight Online Pharmacy Consumer Protection Act) is the fact that the stimulant medication shortage is at its worst. Things are so bad the U.S Food and Drug Administration (FDA) and DEA issued a joint letter on August 1st to further detail actions being taken to address the shortage and consumer struggles. The problem with the letter is it is largely bypasses the responsibility the DEA has in the current situation. Leaning into a claim that manufacturers haven’t filled their annual quota limits in production and pointing fingers at an increase in legitimate prescription of stimulants to manage conditions like attention deficit hyperactivity disorder (ADHD), the letter fails to recognize that the DEA also places extraordinary limits and scrutiny on pharmacies dispensing stimulant medications. Known as “drug diversion”, the idea behind monitoring pharmacies has some merit when viewed under the lens that pharmacies have a responsibility to limit index events like those “pill mills” associated with the opioid epidemic. However, the DEA doesn’t take responsibility for pharmacy raids or strict enforcement against prescribing providers working to keep patients from turning to street supplies by providing legitimate prescriptions.
For the DEA to be a meaningful partner in combatting both illicit and harmful drug use and overdoses and help to address drug shortages, limiting harmful diversion, the agency needs to consider a dramatic shift from an “all drugs are bad, and the people who use them are bad” mindset. There needs to be a thoughtful “medium, wherein stakeholders other than law enforcement can engage in distinguishing best practices in supply chain security and harm reduction and readily identifying criminals taking advantage of patients seeking care by any means they can achieve it – including illegal and illicit channels.
Patient advocates outside of harm reduction and substance use disorder focuses and the industry stakeholders who serve these patients would do well to consider engagement in these and other opportunities to help re-shape and re-imagine the DEA’s role, ideas, and programs to better serve the public at large, better secure the supply chain and limit disruptions, and ensure patients can have ready, reliable, and modernized access to the care we need.
Feds: “Harm Reduction Framework”
On May 15th, Substance Abuse Mental Health Services Administration (SAMHSA) published a document which seeks to “…inform SAMHSA’s harm reduction activities moving forward, as well as related policies, programs, and practices,” and “to inform SAMHSA of opportunities to work with other federal, state, tribal, and local partners toward advancing harm reduction approaches, services, and programs.” The document, called the Harm Reduction Framework, specifically acts as a “level setting” document in addressing substance use as a public health issue.
While the document includes reach within the Office of National Drug Control Policy (ONDCP) and other agencies, like the Centers for Disease Control and Prevention (CDC), it does not have any “mission control” or enforceable policy influence with the Drug Enforcement Agency (DEA) or other law enforcement, which has been a central tool in federal, state, and local government responses to drug use and the opioid epidemic. Indeed, “law enforcement” only shows up once in the document’s contents and once more in the document’s references list. Arguably, whereas the document serves well as a “level setting” opportunity between various stakeholders, which claims to include “law enforcement” personnel, this effort is admirable but will lack “teeth” due to harm reduction as a programmatic idea from a public health lens when law enforcement remains a contraindicated method of response.
SAMHSA has also asked for specific feedback on the framework by way of a public comment form, indicating an effort more to formalize the framework's ideas as a policy stance.
The form follows the flow of the document with the first question seeking general and overall feedback. The second question asks for feedback on the document’s introduction and review of the working group, why the document exists, and historical recognition of how harm reduction has operated in response to substance use. This should be relatively uncontroversial for most respondents. The majority of feedback may seek to clarify or otherwise add details which lengthen the document, if adopted, but will not necessarily impact the substance of this section. The only area which might become “sticky” is the inclusion of “sex work” among “behaviors” associated with substance use and among those who might benefit from harm reduction programming.
The next four questions seek feedback on the core chaptered content pf the document as follows:
“Pillars” of harm reduction
“Supporting Principles”
“Core Practices”
“Community-Based Harm Reduction Programs” (CBHRP)
The document’s Pillars are outlined to include:
Guided by people who use drugs (PWUD) and with lived experience of drug use (this might also include family members, intimate partners, friends, and so forth of PWUD)
The inherent value of people
Commits to deep community building and engagement
Promotes equity, rights, and reparative social justice
Offers low-barrier access and non-coercive support
Focuses on any positive change as defined by the person
Supporting Principles include:
Respecting autonomy
Practicing acceptance and hospitality
Providing support
Connecting family (biological and chosen)
Provides many pathways to wellbeing across the continuum of health and social care
Values practice based evidence and on-the-ground experiences
Cultivates relationships
Assists and not directs
Promotes safety
Engages first
Prioritizes listening
Works toward systems change
Core Practice Areas” include:
Safer practices
Safer settings
Safer access to healthcare
Safer transitions to care
Sustainable workforce and field
Sustainable infrastructure
The final segment focuses on a brief description of CBHRPs, up to and including research projects used to explore innovation and efficacy of particular programs.
This section is noted with an asterisk “as permitted by law” – a nod toward the issue of law enforcement as a primary response tool to substance use and the limitations of SAMHSA as a result.
Advocates should anticipate some funding and program initiatives to reflect the general ideas around this framework or any final product around this framework. However, those barriers as a result of law enforcement and politicized attitudes will remain a barrier and perhaps present challenges for implementing novel programs. Strategically, much like SAMHSA’s drug court grants, the agency should consider how to leverage supportive funding incentives for states and municipalities to involve themselves in any resulting programming.
The public comment period is open until August 14th.
House Appropriations Mark-Up Alarms HIV Advocates
On July 14th, the U.S House of Representatives Committee on Labor, Health and Human Services, Education, and Related Agencies (LHHS) issued its fiscal year (FY) 2024 appropriations mark-up (Editor’s Note: the mark-up hearing can be viewed here). The bill passed out of committee on a party line vote, with Republicans voting in favor and Democrats voting against. The party split reflects what Democrats have framed as bad faith undermining of agreements on spending levels made in May’s debt limit ceiling deal and include policy provisions geared toward stoking a “culture” war. While the leading issue is incredibly steep cuts to public health programs, including entirely eliminating funding for the previous administration’s Ending the HIV Epidemic initiative (which the Biden Administration wished to continue), the policy riders at issue would also undermine best practices for achieving our public health goals by limiting the types of care, education, and support services communities accessing HIV services might be able to access.
Brass tax, Committee proposed:
Ending the HIV Epidemic eliminated (-$524M)
Ryan White HIV/AIDS Program reduced (-$74M, eliminates dental coverage and AIDS Education Training Centers [AETCs], as included in Part F)
Minority AIDS Initiative reduced (-$32M)
Substance Abuse Mental Services Administration – MAI eliminated (-$117M)
Flat funding for the Centers for Disease Control and Prevention’s HIV and HCV prevention programs
Flat funding for other parts of the Ryan White HIV/AIDS Program, particularly for AIDS Drug Assistance Programs (ADAPs)
Non-HIV related cuts seek to further defund public education and the National Institutes of Health and eliminate Title X and Teen Pregnancy Prevention Programs, the federal work-study program, among other things.
HIV advocates across the country decried the bill, including but not limited to The AIDS Institute, HIV + Hepatitis Institute, AIDS United, the National Association of State and Territorial AIDS Directors (NASTAD), and the National Minority AIDS Council. Southern AIDS Coalition (SAC) has organized a letter for individual advocates and organizations to sign-on. The letter is addressed to Senators Tammy Baldwin and Shelly Moore Capito. Astute observers already recognize this appropriation will not survive the Senate as drafted by the House.
Earlier this year, HIV media outlet The Body called these efforts out for what they are and by title “HIV is Being Swept Up in the Anti-Woke Agenda”. Mandisa Moore-ONeal, Executive Director of the Center for HIV Law and Policy (CHLP), drew a direct link between behavior seen earlier this year in Tennessee as a forebearer of federal moves, “Can’t help but think back to all those…who dismissed us when we said to notice these state funding cuts and to start moving against them but told us again and again ‘It’s just the South’.” The Centers for Disease Control & Prevention’s landing page for regional analysis on HIV identifies that 51% of new HIV diagnoses are among Southerners.
Politically, Southern states are often dismissed by politicians (and advocates) not from here because some of the country’s most conservative strategies are developed in the South. However, the racial diversity of the South is also the reason progressive advocates need to focus on the region. That same diversity is precisely why the nation’s civil rights battles started here and why the forefront of combatting the domestic HIV epidemic, be it advocacy, services, or policy, must be focused here.
The Community Access National Network has already joined our colleagues in signing-on and condemning these cuts which, if enacted would not only bring a halt toward our progress in combatting HIV and other public health concerns, but would signal a dramatic step back and make our goals impossible to achieve. The House’s appropriation amounts and the policy riders included are not only mean-spirited, political jockeying of resources the most vulnerable communities in the country rely upon, they are staggeringly dangerous.
MPOX Resurgence Points to Potential Trouble Ahead
Earlier this year, as part of Community Access National Network’s (CANN’s) Monkeypox (now MPOX, previously MPV) Response and Monitoring Project, this blog cautioned against premature declarations of “victory”, urged a recognition of the likelihood MPOX would become endemic to the United States, and relayed anecdotal reports of new MPOX infections, both breakthrough and naive. CANN’s concerns were and remain centered on insufficient vaccine coverage and screening among highly marginalized, highly affected communities. Very specifically, due to anecdotal reports relayed to CANN in January 2023, heightened concern exists regarding provider knowledge, willingness to screen when presented with symptoms, and willingness of public health agencies to take community reports at face-value, rather than paternalistically denying the potential or possibility of new outbreaks or breakthrough cases.
Since then, a study out of France has identified a new cluster of MPOX cases, of which most had some level of previous vaccination, with more than half having had a “complete” vaccination cycle (several potential situation are qualified as “complete”, including a combination of childhood smallpox vaccination and “3rd generation” vaccination in 2022 as part of the 2022 MPOX outbreak). Of these, none were associated with a specific event – which indicates independent exposure among a social-sexual network and not an “index” event.
Similarly, a recent report from Howard Brown Health indicates there is a resurgence of MPOX virus cases in the Chicago area since April 17, 2023. Since April 17th, seven new cases have been identified in the area, representing a departure from the three months prior, when just one case of MPOX was identified in the area, and the highest case rate since November 2022. Patient data related to these cases have not been made available.
This increase in cases in the Chicago area is concerning, particularly as the city is about to see an influx of tourists for this year’s International Mr. Leather (IML) contest from May 25-29, 2023. The event brings in thousands of LGBTQ+ people from across the world for a variety of contest events, parties, and social gatherings where the populations most at risk of contracting MPOX—Black, Indigenous, and other People of Color (BIPOC) Same Gender Loving, Gay, and Men who have Sex with other Men (SGMSM) and Persons Living with HIV/AIDS (PLWHA)—will be in close contact with one another in crowded spaces often wearing little clothing, actively engaging in social-sexual environments, or otherwise increasing their sexual partners, often time anonymously, which will increase their possibility of being exposed to MPOX. To be clear, sexual activity in these spaces should be celebrated and effective interventions should be designed around how to empower fulfilling sexual activity while reducing risk of exposure.
After IML, Chicago will begin its 2023 Pride month, with the festivities to continue through the month of June—another prime opportunity for MPOX to spread from person to person.
In addition to the pressing concerns related to potential infections, this serves as an excellent example of why we should not be quick to call an end to public health emergencies. From almost the beginning of the 2022 MPOX outbreak, it was a disease that disproportionately impacted minority and underserved patient populations—those who were least likely to have access to or feel comfortable and safe seeking healthcare services that would lead to the identification, diagnosis, and treatment of MPOX, much less receive prophylactic vaccinations to reduce the risk of transmission.
Any time we call an end to a public health emergency where the disease primarily impacts underserved populations, we run the risk of de-prioritizing physician awareness of the disease. This is particularly true with MPOX, with which physicians outside of the infectious disease space were largely unfamiliar. Additionally, although vaccine supplies were increased by dividing the single subcutaneous dose into a two-dose intradermal delivery system, vaccine supplies were initially highly limited. Moreover, Black patients were the least likely to receive vaccination against MPOX, meaning that a priority population is still unprotected again a potential resurgence of the disease.
Another concern related to the spread of MPOX relates to the efficacy afforded by the vaccine over time. Few data are available about the continued protection of the MPOX vaccine, largely because this was one of the first use cases of the vaccine in a real-time setting with an adjusted dosing mechanism. If there are concerns about the efficacy waning, local health officials and event coordinators should make efforts to secure and provide vaccination services on-site at these very public, sex-positive events, and at a full single dose, rather than a two-dose series. While those vaccines may not provide immediate protection, they could serve as a prophylaxis against infection and transmission.
Ending public health emergencies almost always poses the risk of shifting attention away from populations where a disease may continue to flourish largely unchecked. We must remain vigilant and keep easily transmissible diseases at the front of our minds when providing services to those most at risk.
Advocates should remain engaged with their local communities, encourage ready responses from public health entities, and those same entities (contracted providers and state and community health departments) should be held accountable for being responsive, creative, and careful as community members and advocates identify potential cases and outbreaks.
New STI Surveillance Report – It’s Not Good
In late 2021, ProPublica profiled the efforts of a local public health worker, Mai Yang, Mai Yang, as she sought to track down a pregnant client recently screened for syphilis Yang was urgent in the need to find this client and get her curative treatment, three uncomfortable injections of penicillin, completed at least 30 days before giving birth. Congenital syphilis is a killer with a near 40% chance of a newborn dying or being stillborn. Beyond death, congenital syphilis risks a range of difficulties, from disabling deformities to cognitive dysfunction. COVID-19 impacts were readily felt throughout the story as Yang’s client, Angelica, struggled with housing, a language barrier required an interpreter, and, eventually, the clinic Yang sought to link Angelica to was not able to accommodate a walk-in appointment, despite Yang having gotten assurances they could.
Last week, the Centers for Disease Control and Prevention (CDC) released its annual sexually transmitted infection (STI) surveillance report for the year 2021, and the news, while not surprising in retrospect, is not good. Both syphilis and congenital syphilis cases rose about 32%, compared to 2020. 2020, on its own saw a moderate rise in both syphilis and congenital syphilis. However, the CDC notes 2020 as the most affected year in STI surveillance with a marked decreases in screening activities in much of 2020 and higher than previous baseline diagnoses throughout much 2021 (mostly around the 150% level but a massive spike well above 200% around November 2021 – or about the time of ProPublica’s report being published).
Gonorrhea and chlamydia cases rose, though not as dramatically. Herpes, despite being a prevalent STI, is not a reportable illness and thus not tracked in the annual report.
This marks the eight consecutive year of increasing STI diagnosis, as noted by the National Coalition of STD Directors and Association of State and Territorial Health Officials. The situation is dire, going forward. Public health offices across the country are expecting to see an exodus of staff in the next 5 years. Between low pay and poor benefits relative to the private sector and displeasure with supervisors (which may be attributed to a lack of flexibility befitting the modern world or political pressures exerted at the appointment level), young and even well-established professionals are planning on leaving this space. And none of that necessarily reflects struggles with private partners or contracted clinics, which are equally struggling with securing funding and meeting ever increasing demands to do more with less.
In the ProPublica article, former CDC Director Dr. Tom Frieden reflected on how the United States has a terrible tendency to go through “a deadly cycle of panic and neglect”. And the same might be considered here. When President Biden announced in May of 2021 that his administration would be working to secure funding for “tens of thousands” of jobs to respond to COVID-19 and support local public health officials, there was an implication those dollars (secured in the American rescue Plan) would also fund positions that had been left to atrophy or were usurped by COVID-19 activities – most notably, disease intervention specialists. But COVID-19 is winding down, in so far as the Biden Administration seems prepared to invest much in the way of workforce dollars, and that promise made in 2021, was supposed to extend through 2026. If comments from federal legislators last year were any indication, there’s not much hope yet in this Congress choosing to ensure funding is secured to help these programs meet their goals.
In a recent interview, U.S Food and Drug Administration (FDA) Commissioner Dr. Robert Califf said “misinformation” was a leading cause of a decline United States life expectancy. And while that may one element of the issue, an abject failure to appropriately fund, stay competitive with the private market, and retain the talent needed to execute public health programs is core and central to this issue. The latest STI surveillance report shows us this plainly. Technology can only do so much in terms of outreach and extending capacity – in order to meet the demands of public health, the human element must be sufficiently supported.
Advocates would do well to take the long-view of their work. It is critically necessary to support existing public health programming and to address disparities being laid bare by annual surveillance data in order to reach an equitable health dynamic in this country – health justice. We cannot get there without supporting public health entities, shielding them from the politicalization of their mission work, and ensuring they’re appropriately appreciated for the life-saving work they do. We cannot represent patients when we don’t know who they are. We must participate with our partners in elevating the STI crisis for what it is – a public health emergency.
A Pox in the Hen House: A Timeline of the MPV Outbreak and Topline Numbers
The first Monkeypox (MPV) diagnosis in the United States was reported on May 17th, 2022, though testing data indicate that the first test that returned a positive result was administered on May 10th. By July 3rd, 2022, there were over 1,500 reported cases in the United States.
By early July 2022, white Americans accounted for 47.6% of MPV diagnoses. But by July 24th, 2022, with 7,266 cumulative MPV diagnoses, Black Americans for the first time accounted for most positive diagnoses—32.6%—in the Centers for Disease Control and Prevention (CDC)’s Morbidity and Mortality Weekly Report (MMWR) Week 30. For all but 8 out of the following 28 weeks (ending in MMRW Week 5, 2023), Black Americans accounted for the highest percentage of positive test results. White Americans accounted for the majority of weekly positive diagnoses in only 7 weeks in that same period of time. On August 9th, 2022, the U.S. government declared MPV a Public Health Emergency (PHE). As of February 15th, 2023, there have been a total of 30,193 identified MPV diagnoses and 38 confirmed deaths as a result of MPV.
On May 22nd, 2022, the first JYNNEOS vaccines were administered as prophylaxis against MPV in the United States. Initial supplies of the MPV vaccine were low, however, and the U.S. Food and Drug Administration (FDA), to increase the available supply, issued an Emergency Use Authorization (EUA) on August 9th, 2022, allowing healthcare providers to administer the vaccine in a two-dose series using intradermal administration based on findings from a 2015 study that evaluated the efficacy of intradermal compared to subcutaneous vaccine administration. The total number of vaccines administered in a single week peaked in the week of August 7th – August 14th, 2022, with 108,895 total vaccines administered. By September 10th, 2022, the number of weekly second doses administered outstripped the number of first doses for the first time. This trend continued until the week ending on January 28th, 2023. The number of weekly vaccine administrations dropped precipitously in the week ending on October 1st, 2022. As of February 28th, 2023, a total of 1,196,047 doses of the MPV vaccine have been administered.
Access to and administration of the MPV JYNNEOS vaccine in the United States appear to have been highly correlated to race. In both First- and Second-Dose administration phases, white Americans were the most likely to be vaccinated, with 46.4% of first doses and 50.3% of second doses being administered to white Americans. White Americans received 47.9% of all vaccines administered. Despite the fact that Black Americans represented the highest percentage of diagnoses in the United States—33.7%—just 11.3% of first doses and 10.7% of second doses were administered to Black Americans, receiving just 11.1% of all vaccines administered. Among Hispanic Americans—who accounted for 29.6% of all MPV diagnoses in the United States.—just 20.7% of first doses, 19.6% of second doses, and 20.3% of total doses were administered to this population.
The first doses of TPOXX (tecovirimat) for the treatment of severe MPV disease were prescribed on May 28th, 2022. TPOXX administration is primarily reserved for patients with severe symptoms of the disease, who are immunocompromised, or who have other concurrent conditions that may present complications. As of January 25th, 2023, 6,832 patients were prescribed or treated with TPOXX.
On November 28th, 2022, the World Health Organization (WHO), to address racist and stigmatizing language associated with MPV recommended a global name change for the virus to “MPOX.” (Disclaimer: CANN continues to use “MPV” for its current project merely for the purpose of consistency in report language, but will begin using “MPOX” upon conclusion of the project)
On December 3rd, 2022, the U.S. government announced that it would not be renewing the PHE for MPV. The PHE officially expired on January 31st, 2023.
The Lessons We Applied, the Ones We Learned, and the Ones We Failed to Heed
One of the most successfully applied lessons was the implementation and utilization of existing testing, vaccination, and surveillance systems that were created in response to the COVID-19 outbreak.
Of the 57 reporting U.S. jurisdictions, 31 utilized their existing disease response, reporting, and tracking infrastructures to deploy in-depth disease MPV surveillance for the majority of the outbreak. The surveillance staff and protocols developed during the COVID-19 pandemic quickly pivoted to include MPV in their work, expanding their disease reporting and dashboards to include MPV case counts and demographics to better track the outbreak. Existing vaccine infrastructures including, but not limited to, staffing, scheduling systems, and drive-through delivery spots, were adapted, expanded, or repurposed to incorporate MPV vaccine supplies and dose administration.
Several jurisdictions truly set standards in their reporting, including the states of California, Colorado, Georgia, Kentucky, Massachusetts, Michigan, and New York City (which is reported separately from New York state). They provided excellent MPV diagnosis demographic breakdowns that included age groups, racial/ethnic minority categories, and gender reporting that included trans, non-binary, and other gender expression categories. These data helped to direct responses and better measure equitable outreach, education, and access to treatment and vaccines to the most affected communities.
To hear state and federal public health officials tell it, the U.S. response to the MPV outbreak has been a masterclass in how to effectively respond to and control an epidemic of a highly infectious disease. We’ve heard about how successful and swift the response to the outbreak was and, for a certain segment of the population, that may be true.
For many white, cisgender men who have sex with men (MSM), the outbreak has been little more than a month-long inconvenience; a blip that barely pinged their radars. The other side of that story, however, lies in the marginalized demographic groups.
For all of the successfully deployed public health systems, the truth is that MPV has been almost exclusively a disease that impacts the “others” in our society. From the beginning of the response, LGBTQ+ patients reported facing stigmatizing, discriminatory, and/or outright racist attitudes and behaviors on the part of medical professionals and administrative staff, particularly those seeking services outside of urban settings.
The unfortunate truth of healthcare provision is that every disease that is primarily acquired via sexual transmission comes with its own set of social, moral, and medical stigmata. In areas where self-reported levels of religiosity are high, patients seeking care often encounter negative behaviors and reactions from healthcare workers and administrative staff both inside and outside of the STD/STI/HIV spaces. While the Health Insurance Portability and Accountability Act (HIPAA) is supposed to protect patients, the reality on the ground is that healthcare workers can be woefully loose-lipped when it comes to sinking the social ships of the patients who live in small or close-knit communities. Moral judgments are made; stories get told; patients are admonished and made to feel ashamed—the impacts of these behaviors, both short- and long-term, can lead to patients refusing to seek testing or treatment until they feel they absolutely must, to avoid being honest with physicians about their symptoms, or to refuse to seek vaccinations or treatment services to help prevent infection or the further spread of the disease.
When it came to the delivery of MPV vaccines, the splitting of the JYNNEOS vaccine into two doses both created confusion about the efficacy of the vaccine and increased barriers to people wishing to complete the two-dose series. With any vaccine series, the fewer times patients need to schedule or show up for an appointment to receive their shots, the more likely they are to get fully vaccinated. Additionally, the decision to use intradermal vaccine administration as the delivery method—one of the more difficult delivery methods to correctly perform—resulted in reports of unsuccessful attempts at vaccinating individuals, particularly in patients with darker skin. Additional concerns, which were only marginally addressed by later guidance—and inconsistently applied across jurisdictions and providers—included discomfort and scarring, particularly among those prone to keloids. This meant that several patients—mostly Black and Brown—had to have their dose readministered at a later date creating yet another unnecessary barrier to becoming fully vaccinated.
Another factor that negatively impacted the MPV vaccine uptake was the exponential increase in self-reported hesitancy, skepticism, refusal, and beliefs in scientifically and factually inaccurate information about vaccines, in general. One of the worst consequences of the COVID-19 pandemic response was the massive influx of false information about how vaccines are developed and manufactured, what their contents are, their risks and side effects. Those challenges were compounded by misinformation, such as massive government/billionaire/Jewish/Chinese conspiracies to commit every farcical atrocity under the sun – including surreptitiously implanting microchips, giving people mutant magnetic properties, sterilization…you name it, some shadowy organization was allegedly doing it.
Despite these falsehoods being easily disproven within seconds, for many people the burden of proof has never been on the people making the false claims to prove their theories, but on the “experts” to disprove what the neighbor’s cousin’s sister’s oldest great-grand-nephew said about how the vaccine caused him to go blind.
Beyond those haphazardly manufactured and too easily consumed lies about vaccines, Black and Brown communities have historically legitimate reasons to distrust the government and medical authorities. Decades of actual and well-documented surreptitious sterilization, non-consensual experimentation, and abuse at the hands of systemically racist medical establishments have resulted in a generational and almost endemic distrust of public health measures, treatments, and authorities in minority communities. Efforts to combat generational hesitancy, avoidance, and distrust are slow-going, taking decades of work to undo or repair the harm that has been done to those communities. Add on top of that steady and relatively unchallenged social, digital, and visual media streams churning out anti-vax conspiracy theories, and that process becomes all the more difficult.
In Black and Hispanic men, as well as in communities of Persons Living With HIV/AIDS (PLWHA), MPV was largely allowed to run rampant, in no small part because of ineffective, lacking, or wholly absent educational, outreach, and vaccination strategies designed to reach those communities. While the work done by Drs. Demetre Daskalakis and David Holland in the Atlanta region and in a handful of other major cities was both highly effective and admirable, reality is that their campaign of taking education, testing, and vaccination drives into large-scale venues, gay cruises, fetish events, and sex clubs simply wasn’t scaled and replicated at the levels needed to truly reach those most in need of services.
One of the lessons that we need to learn from the MPV outbreak is that we need to do a much better job of delivering healthcare services outside of traditional settings and offering healthcare services outside of traditional office hours.
We already know that rural, minority, and LGBTQ+ populations face critical healthcare staffing and service provision shortfalls. The closure of rural clinics and hospitals, as well as healthcare providers who served primarily minority and/or lower-income patient populations, has exacerbated the negative outcomes and barriers that exist in areas with underfunded, little, or non-existent healthcare infrastructures. While the growth of COVID-19-related pop-up services and locations provided hope for improvement, the truth is that those investments were never designed to be long-term, nor were those investments or their implementation welcomed in more conservative parts of the country.
If we want to effectively serve underserved populations, we must think and act outside of the standalone brick-and-mortar healthcare paradigm. The MPV outbreak has shown us that we need to significantly increase local, state, and federal investments in mobile, pop-up, and telehealth healthcare delivery methods and models to meet people where they are. We also need to invest in more community-based providers, service models, and interventions. We need more public-private collaboration design – like the New York City Health Department partnering with the Sisters of Perpetual Indulgence for generating a community experiences feedback system.
Many of the most innovative and successful STD/STI/MPV interventions don’t require patients to come into a standard physical location to access testing, vaccination, and treatment services. They are set up in sex clubs and bars; they show up at concerts, parties, and other big events; they offer services in churches in communities where faith plays an important role in the lives of their patients; they build trust in, develop relationships with, and take mobile units into encampments of people experiencing homelessness. Essentially, they go out and meet patients where they are and when they’re available. A pox in the hen house has taught us one very valuable lesson: we need to fix these barriers sooner rather than later.
When MPV Became An STI
There comes a time, in the progression of any outbreak, where classifications change as we grow to understand more about the disease; a time when people—those who are living with the disease, those who have recovered, those who have never come in contact, and those who encounter the disease in a professional capacity—decide that we’re no longer in the midst of an “outbreak,” but that it has either ended or become endemic. This is where we appear to be with the Monkeypox (MPV) outbreak in the United States.
Since the beginning of the MPV outbreak in the United States, the overwhelming majority of cases have been transmitted via sexual contact (Centers for Disease Control and Prevention, 2022), primarily among men (CDC, 2023), particularly among Men who have Sex with Men (MSM) (Spicknall, et al., 2022), and disproportionately among Black Americans (CDC, 2023). The Community Access National Network (CANN) has been actively tracking reporting of MPV since September of 2022, and in that time, we have witnessed a troubling pattern emerging: the celebration of a “successful” control and suppression of a disease outbreak when the disease actually risks becoming endemic.
When we say that a disease has become endemic, it means that the disease is a constant presence in a certain population within a specific geographic region. In this case, we mean that MPV has relatively rapidly transitioned from a highly concerning outbreak to one that is being treated as a sexually transmitted infection (STI) similar to syphilis—one that is likely going to just “be around” no matter what we do. In the MSM communities that have been overwhelmingly impacted by MPV, members of those communities have already started treating it as such:
“We know it is how we are getting it, we just don’t know what to do about it because, based on lesion location alone, for example, a condom would not have prevented some of these exposures.”
This comment from an HIV activist and advocate living in New York City’s Hell’s Kitchen was related to me during a conversation about anecdotal reporting of disease outbreaks in the area.
“I know of at least a dozen men in the last couple of weeks who are experiencing minor infections despite being vaccinated or previously infected, and this week, I have seen several sex workers in the streets around here who are clearly experiencing full-blown infections, implying no vaccination.”
These statements raise several concerns, not the least of which is the availability of vaccine supplies and the distribution of said vaccine among priority populations. Additional concerns include what, if anything, can be done to curb the spread of MPV among MSM populations when vaccine supplies are unable to keep up with the demand if the virus is, in fact, becoming endemic. Will we simply decide, as a nation, that it’s just something we have to live with and move on with our lives?
One of the unfortunate truths about the availability and distribution of the MPV vaccine is that the populations who were the most disproportionately impacted by the virus were some of the least likely to receive the vaccine. As of January 19th, 2023, 48.3% of vaccines administered have been administered to White residents, despite the fact that just 22.4% of MPV cases have occurred in White residents. Comparatively, 34.7% of MPV cases have been identified in Hispanic residents, with just 23.4% of vaccines going to that population, and 27.4% of MPV cases have been identified in Black residents, with just 12.8% of vaccines going to that population.
Essentially, vaccination outreach efforts have simply not been sufficient to reach the populations most heavily impacted by the disease. While many factors may contribute to this outcome, the primary factor is that Black and Hispanic Americans simply do not have access to or receive the quantity and quality of care that White Americans enjoy—a fact that has been widely discussed but poorly addressed since the early 2000s (Collins, et al., 2002). From the quality of the facilities and services to the availability of service providers, White Americans are more likely to have access to not just more healthcare services but better services that meet their needs, whereas Black and Brown Americans are made to deal with longer wait times, under-resourced and understaffed facilities, and often lower quality care.
While there certainly have been efforts to reach into Black and Brown communities to deliver the same quantity and quality of healthcare services, healthcare workers come up against cultural barriers, including having to confront the generations of discrimination, mistreatment, and neglect that Black and Brown Americans have faced from healthcare professionals that make those populations less likely to seek healthcare services and trust providers.
These are the same barriers that people working in the HIV and STD/STI fields face when trying to provide services, and we still struggle to overcome those barriers today, although progress is being made, particularly when healthcare services are provided by members of those communities whom they know and trust. The same logic can and should apply to the delivery of vaccines, but the sad reality is that vaccine hesitancy and refusal continue to be high in Black and Brown communities (Maurer, Harris, & Uscher-Pines, 2014).
Beyond racial disparities, further concerns exist around barriers that impact the general MSM, Transgender, and Queer populations. One such barrier is the lack of culturally competent, sex-positive, and queer-centric care provision, even in areas as diverse as Hell’s Kitchen:
“A number of my friends, as well as myself, if I’m being honest, have reported that their physicians are both unaware that reinfection with MPV is possible and that infections can still occur in people who have been fully vaccinated, and as a result of their knowledge gap are refusing to test MPV lesions.” my friend continued. “There is a paucity of physicians who understand that LGBTQ+ people are going to continue to be sexually active, and this lack of cultural competence leads to our critical healthcare needs going unaddressed.”
What many Americans, and sadly many physicians and healthcare providers, fail to recognize is that healthcare is rarely a “one-size-fits-all” provision model. When we talk about diversity in patient populations, we’re should be talking about more than just racial diversity; we need to include sex and gender diversity, sexual orientation diversity, religious diversity, age diversity, and income diversity. Every patient, whether or not they are aware of them, is impacted by a wide variety of experiences related to their race, age, sex, gender, sexual orientation, and religious beliefs, and those experiences inform when, why, and how they access healthcare services. When providers are not aware of and responsive to those experiences—something that is truly difficult, particularly in areas where the patient-to-physician ratios are astronomically high—the quality of the services being provided suffers.
One way to approach this would be the better (and potentially mandated) incorporation and provision of STD/STI testing, prevention, and care in general practice settings. This would help to normalize the testing, identification, and treatment of STD/STIs in the general population and make seeking services for them less stigmatizing.
Another opportunity that is rarely explored is the provision of STI testing and vaccination services in sex-based venues, such as sex clubs, bath houses, and other venues where intimate contact between individuals is likely to occur. While some physicians—most notably Drs. David Holland and Demetre Daskalakis—have been actively pushing for and engaging in this type of health intervention, it is still a relatively rare type of intervention outside of large urban areas. Moreover, providing these types of services requires additional training for staff, particularly around situational and cultural awareness, as well as developing best practices for interacting with people in these types of settings without negatively impacting the atmosphere and customer bases of those settings.
If we are ever going to eradicate MPV in the United States, we are going to have to do a significantly better job of getting vaccine supplies to those most likely to be impacted and do a better job of overcoming the cultural and hesitancy barriers that exist in those communities. It also means that we have to do a better job of educating the MSM community about the virus and how it’s spread and doing so in a way that is both sex-positive and doesn’t rely upon fear-based tactics to scare people into getting vaccinated or into a monastic lifestyle.
More importantly, we need to come up with a way to incorporate anecdotal reporting of localized outbreaks of MPV in communities into our responses. While the CDC and states may be taking victory laps on their “successful” MPV responses, the reality is that MPV outbreaks are still ongoing and, in many places, are doing so relatively unchecked with little awareness of the disease, its symptoms, its treatments, or how to prevent it.
While anecdotal evidence is just that—based on personal experience rather than hard data or research—we know that anecdotal evidence can be very important when it comes to identifying outbreaks early, particularly in minority and underserved communities. We need to develop a better way to incorporate those anecdotal reports into our investigations so that we can catch outbreaks early on rather than waiting until cases become widespread. Simply because official reports of cases show a decrease in new infections doesn’t mean that infections aren’t occurring in populations that are less likely to seek healthcare services.
References
Centers for Disease Control and Prevention. (2022, December 08). How It Spreads. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for Emerging and Zoonotic Infectious Diseases: Division of High-Consequence Pathogens and Pathology. https://www.cdc.gov/poxvirus/monkeypox/if-sick/transmission.html
Centers for Disease Control and Prevention. (2023, January 18). Mpox Cases by Age and Gender, Race/Ethnicity, and Symptoms. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for Emerging and Zoonotic Infectious Diseases: Division of High-Consequence Pathogens and Pathology. https://www.cdc.gov/poxvirus/monkeypox/response/2022/demographics.html
Collins, K.S., Hughes, D.L., Doty, M.M., Ives, B.L., Edwards, J.N., & Tenney, K. (2002, March). DIVERSE COMMUNITIES, COMMON CONCERNS: ASSESSING HEALTH CARE QUALITY FOR MINORITY AMERICANS. The Commonwealth Fund. https://www.commonwealthfund.org/sites/default/files/documents/___media_files_publications_fund_report_2002_mar_diverse_communities__common_concerns__assessing_health_care_quality_for_minority_americans_collins_diversecommun_523_pdf.pdf
Maurer, J., Harris, K.M., & Uscher-Pines, L. (2014). Can routine offering of influenza vaccination in office-based settings reduce racial and ethnic disparities in adult influenza vaccination? Journal of general internal medicine, 29(12), 1624–1630. https://doi.org/10.1007/s11606-014-2965-z
Spicknall, I.H., Pollock, E.D., Clay, P.A., Oster, A.M., Charniga, K., Masters, N., Nakazawa, Y.J., Rainisch, G., Gundlapalli, A.V., & Grift, T.L. (2022, September 02). Modeling the Impact of Sexual Networks in the Transmission of Monkeypox virus Among Gay, Bisexual, and Other Men Who Have Sex With Men — United States, 2022. MMWR Weekly 71(35), 1131-1135. http://dx.doi.org/10.15585/mmwr.mm7135e2
Troubling Issues with HIV and Monkeypox Co-Infection
In the process of gathering state-level data on the incidence and demographics of Monkeypox (MPV) in the United States, we have come across several reports of people who have been diagnosed with MPV being co-infected with HIV. This worrisome trend indicates the need for targeted interventions, increased testing, and better communication about MPV in both patient and provider settings.
The Community Access National Network (CANN) has launched an ambitious patient awareness campaign focused on the ongoing Monkeypox outbreak. Its ‘MPV Response Project for People Living with HIV’ seeks to gather data and issue reports covering MPV in the United States. The reports will focus on epidemiological trends, vaccine access and equity, state-level access to vaccine and antiviral supplies, HIV and MPV co-infection risk and reporting, and the latest news related to the outbreak. The project is broad in scope, and it will tackle the MPV outbreak in a way that is both data-focused and patient-centric. This month’s blog will focus on the disparities faced by people living with HIV/AIDS (PLWHA) and MPV.
Data from the European Union, United Kingdom, and the United States suggest that between 28% and 51% of persons diagnosed with MPV are also living with HIV (Kuehn, 2022). According to estimates from the U.S. Department of Health and Human Services (HHS), an estimated 40% of people who have been diagnosed with MPV in the U.S. are also living with HIV (HIV [dot] gov, 2022).
These data are considerably troublesome, particularly as research is beginning to show that PLWHA are likelier to have worse manifestations of MPV, require hospitalization more frequently than persons who are not living with HIV, and are likelier to die as a result of MPV co-infection.
The underlying issue?
We simply don’t have enough localized data (or really, financial resources) to create strategic responses.
Currently, there are only three major jurisdictions in the U.S. that publicly report on HIV co-infection in MPV diagnoses—Michigan, North Carolina, and Rhode Island. This includes looking at the municipal jurisdictions that were specifically targeted for JYNNEOS vaccine supplies—Los Angeles, Chicago, New York City, and Houston—of which only Los Angeles’ reporting mentions HIV, and even then, only in relation to tecovirimat (TPOXX) prescribing data.
So, what does this mean?
Primarily, it means that we need to look at other sources in order to extrapolate co-infection data and use modeling to make educated guesses about where risks of co-infection are highest and how best to respond.
There are currently only a handful of recent studies and surveys that focus on the United States outbreak of MPV from which we can glean these data:
1. Curran, et al., published in September 2022, focused on a sample of 1,969 from eight jurisdictions:
California
Los Angeles
San Francisco
District of Columbia
Georgia
Illinois
Chicago
New York (excluding New York City)
These jurisdictions were selected because they were independently funded for HIV surveillance and because they represented areas with the highest rates of MPV infections in the United States.
Curran, et al., found that 755 patients (38%) of that sample were co-infected with HIV. Of those patients, 94% had received HIV care in the past year, and 82% were virally suppressed (Curran, et al., 2022).
2. Miller, et al., released in October 2022, looked at a significantly smaller sample size of just 57 patients who had been admitted to hospitals for severe manifestations of MPV.
Of this sample, 47 (82%) were co-infected with HIV, just four of whom (9%) were receiving antiretroviral therapy (ART) to treat their HIV prior to being diagnosed with MPV.
In terms of demographics, 68% of this sample were non-Hispanic Black Americans, which highlights disparities in HIV treatment in Black communities.
Prior to the release of this report, 12 of those patients died. MPV was listed either as the cause of death or a contributing factor in five of those deaths, six deaths remain under investigation to determine if MPV was the cause or a factor, and 1 death was deemed neither the cause nor a contributing factor (Miller, et al., 2022)
So, what can we learn from these relatively limited findings:
1. We can determine that PLWHA, particularly Men who have Sex with Men (MSM), are at higher risk of contracting MPV than their heterosexual or women peers.
From the data we have reported in previous blog posts and the reports we’ve released, MPV infection rates are highest in three primary populations:
a. MSM
b. Black Americans
c. Hispanic Americans
This should lead us to build strategies that focus on education of providers about properly identifying MPV lesions, testing, vaccination, and treatment of MPV in these communities.
An additional consideration is a lack of uniformity in gender identity reporting and data collections. As of current, while some jurisdictions are collecting gender identity data for MPV metrics (with many more getting a much better handle on the same data for HIV-related metrics), most are not. Similar to data collection and reporting in HIV prior to about 2016, MPV data does not typically distinguish between a person’s sex assigned at birth and gender identity, thus not adequately capturing data that would appropriately represent transgender communities.
In our gathering of state-level MPV reporting, we found that 22 of the 32 jurisdictions that provide gender demographic reporting either do not report on transgender patient populations, at all, or lump all non-cisgender patients into an “Other” category that fails to capture the diversity of patient populations and health outcomes between them.
Two examples of how this data delineation proves particularly relevant can be observed in the emergence of information regarding HIV prevalence among transgender women, particularly transgender women of color, and, more recently, transgender men have largely been ignored as a target population, likely because of stereotypes and assumptions as to the types of sexual activity transgender men might engage in and because transgender men are less likely to access care (Demmons, 2019). A recent study conducted by AIDS United highlighted how deeply flawed some of those assumptions are, with 35% of the transgender men responding to the survey with a self-reported HIV-positive status (AIDS United, 2022).
Further consideration should also be given to persons experiencing or at risk of experiencing homelessness. Miller, et al., found that 23% of the admitted patients were experiencing homelessness, which is likely indicative of a growing outbreak among a key population: PLWHA who may be housing insecure.
2. We don’t know what we don’t know.
One of the largest concerns, here, is that a majority of providers in the United States simply aren’t familiar enough with MPV to identify the disease consistently and correctly. Since the beginning of the epidemic, physicians have struggled to do so, with many misdiagnosing MPV as other diseases or infections, such as herpes or syphilis (Doucleff, 2022). This is because both of those sexually transmitted infections may manifest as skin lesions, similar to MPV. Misdiagnosis can lead to both the provision of ineffective treatments and result in the unchecked spread of MPV. This highlights the need for better provider education about MPV, its manifestations, and how to correctly differentiate between various diseases.
Additionally, while both Curran and Miller provide reporting on HIV co-infection in persons diagnosed with MPV, none of the listed jurisdictions from which they selected their sample groups provide public-facing reporting on HIV co-infection.
In the three jurisdictions we found with this reporting—Michigan, North Carolina, and Rhode Island—48.6% of MPV patients were co-infected in Michigan, 51.6% in North Carolina, and 27.7% in Rhode Island.
These findings fall relatively neatly into the HIV.gov reporting that 28% - 52% of MPV patients are likely to be co-infected with HIV.
However, these numbers could potentially be higher, particularly in major cities, such as Los Angeles, San Francisco, Chicago, New York, DC, Atlanta, and other areas that have higher populations of PLWHA and more areas and venues where PLWHA tend to congregate (e.g., bars, restaurants, sex clubs, steam rooms, et cetera).
3. Although overall diagnoses of MPV have fallen precipitously since August 2022, there is a significant risk of MPV becoming endemic in MSM, LGBTQ, and PLWHA populations.
This will require the development and wider distribution of better MPV-specific vaccines, better MPV-specific treatments, and better education and health communication about MPV and its transmissibility.
There seems to be a prevailing belief that the United States has weathered the worst of MPV. With declining positivity rates, there are some in the public health community who have decided that resources and attention would be better spent elsewhere—specifically, they’re looking at the tridemic of COVID-19, influenza, and respiratory syncytial virus (RSV) that is leaving hospitals once again scrambling for ICU beds. More accurately, it may be said that jurisdictions either cannot or will not expand the existing resources and personnel to allow for the continued surveillance of MPV. This essentially relegates the work of focusing on, addressing, and frankly caring about MPV to those working in HIV and infectious disease spaces.
Already, we are seeing this trend in data reporting: the state of Texas has removed MPV data entirely from its data dashboard, replacing it with Multisystem Inflammatory Syndrome in Children (MIS-C). This is indicative that a lack of financial and human resources, or the lack of political will or interest to increase those resources, will force state departments of health to reduce reporting on MPV in favor of diseases that impact populations they deem “more important” than MSM, Black, and Hispanic populations.
This, again, raises the concern that MPV will become a virus that is all but forgotten by the general public and general practitioners, as those who face the greatest impacts are already marginalized populations. The disparities faced by those bearing the brunt of MPV mirror those in new HIV diagnoses; it is incumbent upon us to respond evaluate and respond to those trends accordingly.
References
AIDS United. (2022, November). CHANGING THE GAME: Visibility of Trans Men in the South. Washington, DC: AIDS United: News and Resources. https://aidsunited.org/wp-content/uploads/2022/11/ChangingTheGame-FinalReport.pdf
Curran, K.G., Eberly, K., Russell, O.O., et al. (2022, September 09). HIV and Sexually Transmitted Infections Among Persons with Monkeypox — Eight U.S. Jurisdictions, May 17–July 22, 2022. MMWR Weekly 71(36), 1141-1147. http://dx.doi.org/10.15585/mmwr.mm7136a1
Demmons, S. (2019, July 10. Why are trans men invisible in HIV prevention & care? San Francisco, CA: San Francisco AIDS Foundation: Our Voices. https://www.sfaf.org/collections/beta/why-are-trans-men-invisible-in-hiv-prevention-care/
Doucleff, M. (2022, June 06). Monkeypox cases are going undetected or misdiagnosed. Washington, DC: National Public Radio: All Things Considered. https://www.npr.org/2022/06/06/1103372564/monkeypox-cases-are-going-undetected-or-misdiagnosed
HIV [dot] gov. (2022, November 30). mpox and People with HIV. Washington, DC: United States Department of Health and Human Services: Office of Infectious Disease and HIV/AIDS Policy: HIV.gov. https://www.hiv.gov/hiv-basics/staying-in-hiv-care/other-related-health-issues/monkeypox
Kuehn, B. M. (2022, September 27). Interim Guidance for Monkeypox Among Patients With HIV. JAMA 328(12), 1173-1174. https://doi.org/10.1001/jama.2022.14727
Miller, M J., Cash-Goldwasser, S., Marx, G.E., Schrodt, C.A., Kimball, A., Padgett, K., Noe, R.S., McCormick, D.W., et. al. (2022, October 26). Severe Monkeypox in Hospitalized Patients — United States, August 10–October 10, 2022. MMWR ePub. http://dx.doi.org/10.15585/mmwr.mm7144e1