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.
Grindr Launches At-Home STI Testing Initiative
In an approach to combat elevated sexually transmitted infection (STI) rates among gay, bi, trans and queer people, the social dating app Grindr rolled out a new initiative providing users the chance to order at-home STI testing kits. Ellen Jenne wrote about this very issue in a recent blog post highlighting the new service the app rolled out to address elevated rates of STI infections among gay and bisexual men who have sex with me (GBMSM) in London.
Grindr partnered with Prepster at The Love Tank to deliver this initiative. PrEPster is a program part of the broader ‘The Love Tank’ community organization, a not-for-profit community interest community (CIC) providing education and research to under-served communities. This trailblazing partnership is why the initiative of providing at-home STI testing kits to users of the Grindr app is now introduced in London.
Grindr writes that this initiative will not only help users obtain knowledge of their health status but also help the app serve as a role model for other social networking apps to also make an emphasis on sexual health matters.
The initiative has already been successful in other countries like Ireland, Georgia, New Zealand and the US. The rate of STI diagnosis among GBMSM in London is recorded to be 15 times higher compared to that of the general population. This statistic is a reason why the initiative has been introduced in London and Grindr also writes that these numbers represent true people with actual struggles relating to fear and discrimination.
In their Grindr Unwrapped for 2023, the app shared statistics about what city users explored the most to attempt a connection with another user and London ranked first. Although a statistic from the previous year, the city’s popularity for being searched the most in one year highlights the importance of introducing the initiative in London overall.
The at-home self-test kits address common fears around STI testing such as physical transportation, fear of judgment and limited clinic hours. The at-home self-test kits address physical transportation barriers in allowing users to test at the convenience of their own homes at any time and be free of any judgment they would otherwise face in a physical clinic location.
Additionally, Grindr promises to not share information it obtains from its users when collecting data to send the kits to users.
Here is how the free and confidential service works:
Access: Users access the service directly from their profile by clicking on the button “Free STI Kit”
Eligibility: After clicking the “Free STI Kit” button, users will be guided through the basic steps to confirm their eligibility for the free testing kit.
Privacy: Once confirmed, the kit will be discreetly delivered to the user’s address. Users can then collect their samples in the privacy of their own homes.
Return: After collecting samples, users can return the kit using the provided free postage.
Results: Within a couple of days of returning the kit, users receive their results via notifications through SHL’s secure platform.
Confidentiality: Throughout the entire process, from ordering to receiving results, users’ information remains strictly confidential and is never shared with Grindr.
This public health push from one of the world’s largest social dating apps provides clear access, guided steps and convenient knowledge of health status. Ordering an STI self-test kit to reduce common burdens faced from members of the GBMSM community will help individuals achieve peace of mind in their community in an attempt to lower the overall heightened STI rates among these individuals.
Innovation as a Change Agent for Patients Leaving Incarceration
For Dontrace Young, leaving incarceration means stepping back into a world saturated with risk. Two of his cousins died from opioid overdoses in their early twenties, and drug use touches nearly every branch of his family tree. He knows the statistics – that the risk of a fatal overdose skyrockets in the weeks after leaving jail. But thanks to a program at the New Orleans jail, Dontrace is now equipped with Narcan and the knowledge to use it, skills that could save his life or the life of someone he loves. Dontrace’s story highlights a harsh truth: for many people leaving incarceration, access to healthcare is not a guarantee, and navigating a complex and often unwelcoming system can feel impossible. This challenge is not unique to those involved with the justice system.
Across the United States, systemic inequities create significant barriers to healthcare access, disproportionately impacting communities of color and those living in poverty. In rural areas, lack of insurance further exacerbates healthcare disparities. While technological innovation promises to revolutionize healthcare, these advancements often fail to reach the margins, sometimes even widening existing gaps. As the Stanford Social Innovation Review notes, an over-reliance on technology without addressing systemic issues can actually worsen health disparities. However, two innovative programs – one in New Orleans and one in Connecticut – offer a different approach, demonstrating that achieving health equity requires meeting people where they are and addressing the social factors that influence well-being.
Overdose Prevention: Preparing for Reentry in New Orleans
Inside the walls of the Orleans Justice Center, a program spearheaded by Dr. Anjali Niyogi is working to equip people leaving incarceration with a life-saving tool: knowledge. Recognizing the heightened risk of overdose for those reentering society after time in the carceral system, Dr. Niyogi founded the Formerly Incarcerated Transitions (FIT) Clinic, a program that provides a bridge between incarceration and healthcare access. A core component of the FIT Clinic’s work involves regular visits to the jail, where a team led by Dr. Niyogi, and including formerly incarcerated community health workers Haki Sekou and Danielle Metz, provides overdose prevention training and distributes Narcan to those preparing for release. The need for such a program cannot be overstated. As a 2007 study in the New England Journal of Medicine revealed, the risk of overdose is 129 times higher for people in the weeks after they leave jail. Factors like reduced tolerance and the increasingly prevalent presence of fentanyl in the drug supply contribute to this alarming statistic. By providing education and resources within the jail setting, Dr. Niyogi aims to mitigate this risk and provide people with the tools they need to stay safe.
Central to the program’s success is the involvement of Sekou and Metz. Having both experienced incarceration themselves, they possess an intimate understanding of the challenges faced by those leaving the justice system. Their presence helps to break down barriers and build trust with a population often wary of traditional healthcare providers. As Sekou explains, “They think doctors are going to use them as a guinea pig. That’s one of the words they use commonly.” By offering a listening ear, sharing their own stories, and providing practical support, Sekou and Metz create a space where people feel seen, heard, and empowered to prioritize their health. For people like Dontrace Young, the FIT Clinic’s impact extends far beyond overdose prevention training. The program connected Dontrace with resources to address his mental health, offering a pathway to a healthier future. By building trust, providing essential knowledge, and fostering connections to ongoing care, the FIT Clinic exemplifies the power of meeting people where they are and addressing health needs within the broader context of their lives.
Healthcare on Wheels: Reaching the Underserved in Connecticut
Recognizing that access to healthcare extends far beyond the doctor’s office, a team at Yale University has launched a groundbreaking initiative: the nation’s first mobile pharmacy. Housed in a retrofitted Winnebago, this innovative program brings a full range of pharmacy services directly to communities facing significant barriers to care, including people experiencing homelessness, those with chronic illnesses, and people with substance use disorders. The mobile pharmacy, the brainchild of Dr. Sandra Springer, a specialist in HIV and addiction treatment at Yale Medical School, aims to bridge the gaps in traditional healthcare delivery. “If we’re going to provide health care and you’re going to provide medication, you better be able to provide that medication,” asserts Dr. Springer. “We should be trying to help people get those services.” The mobile unit, staffed by a team of pharmacists and healthcare providers, travels to locations such as homeless encampments, food pantries, and community clinics, ensuring that essential medications and healthcare services are available to those who need them most.
This innovative approach tackles multiple barriers to care simultaneously. For those without reliable transportation, the mobile pharmacy eliminates a significant hurdle. For people experiencing homelessness, who may feel stigmatized or unwelcome in traditional healthcare settings, the mobile unit offers a safe and accessible alternative. And for those struggling with chronic conditions, the mobile pharmacy provides consistent access to medications and support, reducing the likelihood of complications and hospitalizations.
The mobile pharmacy’s impact extends far beyond simply filling prescriptions. The team provides a range of services, including chronic disease management for conditions like diabetes and hypertension, wound care for those struggling with infections or injuries, and connections to mental health and addiction treatment resources. Jillian Corbin, executive director of the St. Vincent de Paul Place daytime shelter in Norwich, where the mobile pharmacy has become a lifeline for many, attests to its transformative impact: “When the staff from the pharmacy van first arrived in February, the impact to the community was immediate and life-changing.” By meeting diverse needs with compassion and expertise, Yale’s mobile pharmacy serves as a powerful model for how to bring healthcare directly to those who are too often left behind.
Redefining Innovation: Lessons from the Margins
The programs in New Orleans and Connecticut offer a powerful counter-narrative to the prevailing notion of healthcare innovation as synonymous with technological advancement. They illuminate a critical truth: true progress towards health equity requires a fundamental shift in how we define and approach innovation. As Infectious Diseases of Poverty asserts, “social innovation can best be understood as innovation in social relations, in power dynamics and in governance transformations, and may include institutional and systems transformations.” These programs are not simply delivering services; they are transforming systems by dismantling barriers, challenging assumptions, and centering the needs of those most often relegated to the margins. This requires a commitment to investing in what the Stanford Social Innovation Review calls “health-focused social innovations,” rather than solely prioritizing technology-driven solutions that may fail to address the root causes of health disparities, or make them worse.
What makes these programs so effective? They embody key principles of equitable innovation:
Community Engagement: Both programs prioritize the active involvement of their target populations. The FIT Clinic relies on formerly incarcerated community health workers who bring invaluable lived experience and trust to their work. Yale’s mobile pharmacy team collaborates with local organizations and community members to ensure their services are accessible and responsive to local needs.
Culturally Responsive Care: These programs recognize that healthcare is not one-size-fits-all. They approach each interaction with cultural sensitivity, understanding that historical trauma, systemic racism, and other forms of oppression profoundly impact health outcomes and shape people’s experiences with healthcare systems.
Trust and Relationships: Building authentic relationships based on trust and mutual respect is paramount. For those who have experienced stigma, discrimination, or mistreatment within healthcare settings, trust is not a given. Both programs address this by prioritizing empathy, transparency, and a genuine commitment to meeting people where they are, both physically and emotionally.
Addressing Social Determinants of Health: These programs understand that health outcomes are shaped by a complex interplay of social, economic, and environmental factors. By providing transportation, addressing food insecurity, and connecting patients to essential resources, they go beyond treating immediate medical needs and work to create conditions that support overall well-being.
The success of these programs is a call to action for all of us working towards a more just and equitable healthcare system. We must:
Support and invest in community-based programs: Funding should be directed towards initiatives that prioritize social innovation, community engagement, and culturally responsive care.
Shift funding priorities: While technology has a role to play, we must move away from an over-reliance on expensive technological solutions that often fail to reach those most in need.
Advocate for policy change: Systemic change requires advocating for policies that address the root causes of health disparities, such as poverty, discrimination, and lack of access to quality education and employment opportunities.
Amplify marginalized voices: Those most impacted by health inequities must be at the forefront of designing and implementing solutions. We must listen to, learn from, and follow the lead of those with lived experience.
By embracing a broader vision of healthcare innovation – one that centers equity, community, and the lived experiences of those most marginalized – we can begin to create a healthcare system that truly works for everyone.
Equitable Access to Long-Acting HIV Treatment
For people living with HIV (PLWH), adherence to antiretroviral therapy (ART) is crucial. Achieving and maintaining viral suppression, the primary goal of HIV treatment, depends on taking medication as prescribed. Yet, consistent adherence can be challenging due to busy schedules, pill fatigue, stigma, and side effects. Suboptimal adherence has serious consequences, including increased viral load rebound, drug resistance, and disease progression. It also hinders public health efforts to control the HIV epidemic. Long-acting injectable (LAIs) antiretroviral therapies offer a promising alternative by providing sustained viral suppression with less frequent dosing. However, a significant barrier remains: equitable access. Some State AIDS Drug Assistance Programs (ADAPs), designed to support low-income PLWH, do not adequately cover these medications due to cost concerns .
This limited coverage is a public health issue and a moral failing. State ADAPs must provide equitable access to the most effective HIV treatments available that meet the unique needs of the patient, regardless of cost. While the initial expense of LAIs may be high, their potential to improve adherence, viral suppression, and long-term health outcomes far outweighs the financial investment. It's time for ADAPs to prioritize the health of PLWH by ensuring access to LAIs and supporting efforts to end the HIV epidemic.
The Promise of LAIs
LAIs represent a major advancement in HIV treatment. Unlike daily oral ART, which requires daily ingestion and absorption, LAIs are administered as intramuscular injections, typically once a month or every two months. These injections provide a steady release of medication, ensuring consistent drug levels and effective viral suppression.
The benefits of LAIs are significant. The MOCHA study found that adolescents overwhelmingly favored LAIs due to the convenience of less frequent dosing . This reduces the daily burden of remembering to take pills, leading to improved adherence rates—a key factor for successful HIV treatment.
Improved adherence through LAIs also enhances long-term health outcomes and reduces the risk of HIV transmission. When the virus is undetectable, it cannot be sexually transmitted, a concept known as Undetectable = Untransmittable (U=U). By promoting optimal adherence and sustained viral suppression, LAIs become a powerful tool in the fight against the HIV epidemic.
Evidence of Effectiveness
The effectiveness of LAIs is supported by considerable scientific evidence. The MOCHA study found that after 24 weeks of treatment with long-acting cabotegravir/rilpivirine, none of the nearly 150 participants experienced virological failure. This highlights the potential of LAIs to achieve durable viral suppression, especially among younger populations who often struggle with adherence to daily oral regimens.
The LATITUDE study, focusing on PLWH with a history of suboptimal adherence to oral ART, found that long-acting injectable therapy was superior in suppressing HIV replication compared to daily oral medication . The compelling results led the National Institutes of Health Data and Safety Monitoring Board to recommend offering the long-acting medication to all eligible participants.
These studies, along with a growing body of research, show that LAIs are effective in achieving viral suppression and are particularly beneficial for those who struggle with adherence to traditional oral ART. This makes LAIs a critical tool for addressing disparities in HIV treatment outcomes and advancing health equity among PLWH.
Impact on the HIV Epidemic
The effectiveness of LAIs in maintaining viral suppression has significant implications for public health, especially the Ending the HIV Epidemic (EHE) initiative, which aims to reduce new HIV infections in the United States by 90% by 2030. Achieving this goal requires expanding access to effective prevention and treatment options.
LAIs support this effort by fostering optimal adherence and sustained viral suppression. By ensuring that PLWH have access to medications that effectively suppress the virus, we improve health outcomes and reduce the likelihood of transmission, moving closer to the EHE goal.
LAIs also align with the 95-95-95 targets set by UNAIDS, adopted by the EHE initiative, which aim to ensure that 95% of PLWH know their status, 95% of those diagnosed receive sustained ART, and 95% of those on treatment achieve viral suppression. By improving adherence and facilitating viral suppression, LAIs contribute to achieving these targets and reducing new cases.
The International Association of Providers of AIDS Care (IAPAC) emphasized the importance of LAI access for supporting the goals of the Fast-Track Cities initiative . This initiative aims to accelerate progress towards ending the HIV epidemic at the local level. IAPAC argues that providing PLWH with access to effective ART options like LAIs is essential for achieving these ambitious targets.
The Cost Conundrum
The benefits of LAIs are often overshadowed by concerns about cost. Critics, including some state ADAP administrators, point to the high upfront price of these medications compared to generic oral ART options. A 2023 article on AIDSmap highlighted that the price of long-acting cabotegravir would need to drop considerably to be cost-effective compared to daily oral PrEP . This concern about cost is echoed in discussions surrounding LAIs for treatment, with some stakeholders questioning whether the potential benefits justify the higher price tag.
A recent article in TheBody revealed that the annual cost of Cabenuva, a commonly prescribed LAI, is approximately $40,000. This figure highlights the need for careful consideration of drug pricing within ADAP formularies. For comparison, the annual retail cost of the popular oral ART treatment Biktarvy is just over $50,000. However, as of January 2023, only 78% of state ADAPs covered Cabenuva.
This gap in coverage disproportionately affects the most vulnerable PLWH. In states without Cabenuva coverage, nearly two-thirds of ADAP clients live at or below the federal poverty level, compared to 43% in states with coverage. Additionally, ADAP clients in states lacking Cabenuva coverage are more likely to be Black or Hispanic .
While cost is a valid concern, focusing solely on upfront expenses overlooks the potential for long-term savings. ADAPs can negotiate lower drug prices and must consider the broader economic and public health benefits of LAIs.
A Holistic Cost-Benefit Analysis
A comprehensive cost-benefit analysis must consider the long-term impact on healthcare expenditures and public health outcomes. A narrow focus on upfront costs ignores the potential of LAIs to generate significant savings over time.
The HIV+Hepatitis Policy Institute modeled the impact of long-acting PrEP on HIV case aversion and medical cost savings, concluding that improved adherence leads to better health outcomes and reduced transmission, ultimately saving costs for the healthcare system. They projected that increased uptake of long-acting PrEP would avert 139,296 person-years of HIV treatment over ten years, saving $4.25 billion .
Preventing new HIV infections through improved adherence not only saves on direct treatment costs but also reduces the need for costly interventions related to managing complications and comorbidities of advanced HIV. By minimizing the risk of transmission, LAIs contribute to a decrease in HIV prevalence, further reducing long-term healthcare costs and saving lives in the process.
Intangible Benefits
The benefits of LAIs extend beyond economics. These medications significantly improve the quality of life and overall well-being of PLWH.
The MOCHA study highlighted that young people preferred LAIs due to reduced treatment anxiety and fatigue. They appreciated the increased privacy, as they no longer needed to take daily pills that might disclose their HIV status.
ADAP Advocacy emphasizes the importance of patient empowerment and choice in HIV care. LAIs provide PLWH with greater autonomy in managing their health, aligning treatment with their personal needs and lifestyles. This sense of control improves mental health, self-esteem, and quality of life.
By reducing the frequency of medication-related tasks, LAIs help minimize the stigma associated with HIV. Daily pill-taking can serve as a constant reminder of one's HIV status, triggering feelings of shame or fear of disclosure. LAIs, with less frequent dosing, allow PLWH to integrate their care more seamlessly into their lives, reducing the psychological burden.
These intangible benefits, while difficult to quantify economically, should weighed equally when making decisions that affect patient care and access. They highlight the profound impact of LAIs on the lives of PLWH, extending beyond viral suppression to encompass improved quality of life, reduced stigma, and increased autonomy.
Ethical Considerations
Equitable access to LAIs is an ethical imperative. State ADAPs, as safety-net programs for low-income PLWH, have a moral duty to provide access to the most effective HIV treatments, regardless of cost. Denying access based on price perpetuates health disparities and undermines equity.
IAPAC argues that access to innovative treatments like LAI-ART should not depend on socioeconomic status. Providing ADAP coverage for LAIs is crucial for equitable healthcare.
Restricting LAI access disproportionately impacts those already facing systemic barriers, including people of color, those with low income, and those in rural areas. These populations are more likely to have adherence challenges due to social, economic, and structural factors. Denying them access to LAIs further entrenches health inequities.
A commitment to health equity demands prioritizing the needs of the most vulnerable. Cost concerns, while valid, cannot justify denying essential healthcare to those who need it most. State ADAPs must ensure all PLWH can benefit from LAIs, regardless of financial circumstances.
Addressing Barriers and Implementing Solutions
Ensuring equitable access to LAIs requires a multi-faceted approach, addressing cost concerns and systemic barriers. Policy changes at federal and state levels are necessary for creating a more just healthcare system for PLWH.
Policy Recommendations for ADAPs
Mandate LAI Coverage: State legislatures should require ADAPs to cover all FDA-approved LAIs for HIV treatment. This would ensure all eligible PLWH have access to these medications.
Streamline Prior Authorization: ADAPs should streamline prior authorization processes for LAIs, minimizing delays and ensuring timely access to treatment. This could include standardized approval criteria, expedited review processes, and clear communication between providers and ADAP administrators.
Increase Funding Allocations: State and federal governments must prioritize increased funding for ADAPs, recognizing the growing demand for LAIs and their long-term cost savings potential.
Provider Education and Training
The ADAP Advocacy Association underscores the need for robust provider education and training on LAIs. They advocate for targeted education about providing LAIs within a modified clinic flow model.
Ongoing education initiatives should focus on:
LAI Pharmacology and Administration: Providers need a thorough understanding of LAIs, including dosing schedules, potential side effects, and proper administration techniques.
Patient Selection and Counseling: Training should equip providers to identify appropriate candidates for LAIs, considering personalized patient needs and potential adherence barriers. Effective counseling strategies are necessary for addressing concerns and ensuring informed decisions.
Addressing Provider Bias: Some providers may hold misconceptions about LAIs, such as concerns about patient acceptance or injection-related anxiety. Training programs should address these biases, providing evidence-based information and dispelling myths.
By investing in comprehensive provider education and training, we can empower healthcare professionals to embrace LAIs confidently, facilitating broader access and improved health outcomes for PLWH.
Patient Advocacy and Support
Community activism has been a hallmark of the U.S. HIV response, and PLWH should work with clinicians to advocate for state ADAPs to prioritize patient choice and treatment preferences.
PLWH and community organizations can play a powerful role by:
Sharing Their Stories: Personal narratives are powerful tools for raising awareness and influencing policy change. PLWH who have benefited from LAIs can highlight the positive impact, while those denied access can shed light on the challenges and the need for equitable coverage.
Engaging with ADAP Advisory Committees: Many state ADAPs have advisory committees of stakeholders, including PLWH. Participating in these committees provides an opportunity to voice concerns and advocate for policy changes.
Collaborating with Advocacy Organizations: Partnering with national and local organizations can amplify voices, provide resources, and facilitate collective action for policy changes.
Educating Their Peers: PLWH can educate peers about LAIs, dispelling myths and sharing information about the benefits and potential challenges. Peer-to-peer support can empower people to advocate for their health and make informed treatment decisions.
By raising voices, sharing experiences, and engaging in collective action, we can drive progress towards equitable LAI access, ensuring all can benefit from these transformative medications.
Conclusion
Long-acting injectable antiretroviral therapies (LAIs) represent a major advancement in HIV treatment, offering a powerful tool for improving adherence, achieving sustained viral suppression, and ending the HIV epidemic. While cost concerns are valid, a holistic cost-benefit analysis shows that the long-term benefits of LAIs far outweigh the initial investment.
The time for action is now. Contact your state legislators, ADAP representatives, and other stakeholders. Demand equitable LAI coverage and support policies that prioritize the health and well-being of all PLWH. Together, we can dismantle barriers to access and ensure no one is left behind in the fight to end the HIV epidemic.
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.
Considerations for Hepatitis C Vaccine in HIV-HCV Co-Infected Populations
The interplay between groundbreaking research and its real-world application can shape the trajectory of entire communities. Once of the most evident place we see this is in the realm of HIV-HCV co-infection. As we stand on the precipice of breakthroughs in Hepatitis C Virus (HCV) vaccine development, the unique challenges posed by HIV-HCV coinfection come into sharp focus, reminding us of the urgency and significance of our endeavors.
Understanding the Landscape of HIV-HCV Coinfection:
HIV and HCV coinfection represents both a medical challenge and a reflection of broader societal issues searching for policy solutions. These viruses mainly impact marginalized communities, highlighting deeper socio-economic disparities. The combination of HIV, which taxes the immune system, even when well-controlled, and HCV intensifies health risks, such as liver diseases, emphasizes the need for effective interventions like a preventive HCV vaccine. Beyond the medical perspective, societal barriers like stigma, payer barriers, and limited healthcare access further complicate the issue. Recent vaccination studies, including those for COVID-19 and Hepatitis B Virus (HBV) among people living with HIV (PLWH), underscore these challenges and the necessity for tailored strategies. To comprehensively address HIV-HCV co-infection, a holistic approach that considers both medical and societal aspects is essential.
Drawing Parallels: Vaccination Lessons for HIV Patients:
The vaccination experiences of PLWH, especially during the COVID-19 pandemic, highlight the need for tailored strategies. While HIV patients were prioritized due to potential severe COVID-19 risks, vaccine efficacy varied based on individual immune responses, suggesting the potential need for boosters. Similarly, the Hepatitis B vaccination journey revealed that many PLWH had suboptimal responses to the standard vaccine. However, alternative, additional, or re-administration dosing regimens emerged as a promising solution. As we approach HCV vaccine development for people with co-occurring conditions, these experiences and the data-driven developments originating from them provide invaluable insights to anticipate challenges and innovate solutions.
Special Considerations for Vulnerable Populations:
Equitable policy and programmatic design in public health ensures everyone has access to optimal healthcare, yet societal barriers often sideline certain groups. Incarcerated people face challenges like close-quartered living and limited healthcare access, amplifying the transmission of illnesses like HIV and HCV. Tailored strategies, informed by COVID-19 vaccination efforts in prisons, such as on-site clinics, can improve vaccine uptake. People experiencing homelessness, battling issues like unstable housing and societal stigma, benefit from strategies like mobile clinics and community collaborations, as seen with HBV vaccinations. Building community trust, especially for populations with historical mistrust, is vital. Addressing HIV-HCV coinfection requires an inclusive, trust-centric approach, ensuring no one is overlooked.
Parallels with Mpox Vaccine: Addressing Vulnerable Populations
The U.S. Mpox outbreak in 2022 highlighted health disparities, especially among people experiencing homelessness, LGBTQ+ persons, and people of color. Mpox's transmission and significant impact on gay, bi sexual, and same gender loving men (GBSGLM), including those living with HIV, mirrors challenges with HIV-HCV co-infection.
The outbreak revealed health inequity issues, such as stigma and misinformation, exacerbated by the disease's former name "monkeypox." The Centers for Disease Control and Prevention’s (CDC) Mpox Vaccine Equity Pilot Program and Chicago Health Department's community-centric strategies provided insights for HIV-HCV coinfection management. Key takeaways included:
Community Engagement: Engage with affected communities, fostering trust through tailored programs and partnerships. Ready availability and responsiveness were critical to earned trust among affected communities.
Combatting Stigma: Deliver clear messages to dispel myths, ensuring vaccine uptake.
Vaccine Accessibility: Emphasize genuine accessibility, especially for marginalized groups, inspired by the Mpox Vaccine Equity Pilot Program.
Addressing HIV-HCV Co-infection in Vulnerable Groups:
Equity is vital in managing HIV-HCV co-infection, with incarcerated persons and populations experiencing homelessness and housing instability demanding special focus.
Incarcerated Populations: Prisons, due to their close confines and shared activities, are hotspots for disease transmission. While confinement offers some healthcare delivery opportunities, many lack comprehensive or personalized care, and most-notably, provide a microcosm of healthcare failures affecting surrounding communities. Identifying cost-effective program designs which address these disparate would prove beneficial for communities writ-large. Similarly, ensuring post-release care continuity is essential.
Homeless Populations: The transient nature of homelessness poses healthcare consistency challenges. Drawing from smallpox vaccine strategies, mobile clinics and community partnerships are effective. Building trust through tailored campaigns and community collaborations is crucial.
General Considerations: Skilled staff, robust data management, and inter-agency collaborations are essential for effective vaccination campaigns. Sufficient appropriations are required in order to build and maintain the missions of public health departments.
By addressing these populations' unique challenges, we can create an inclusive HIV-HCV coinfection strategy.
Future Medical Considerations:
The evolving nature of medical science presents new challenges and questions. The relationship between HIV and HCV may necessitate a tailored vaccine approach. Given experiences with COVID-19 and HBV vaccinations, how can we optimize the HCV vaccine for PLWH? Are there specific strategies to enhance its efficacy?
Public trust in health institutions remains fragile and highly politcized. How can we effectively communicate an HCV vaccine's importance and safety? How can we rebuild community trust?
Globally, ensuring the HCV vaccine's equitable access, especially in vulnerable populations with significant HIV-HCV co-infection risk, is a challenge. Can we learn from other vaccine distribution programs to strategize for HCV?
Urgent Considerations for HIV-HCV Coinfection's Future:
As we navigate the complexities of HIV-HCV coinfection, several pivotal questions arise, guiding researchers, policymakers, and healthcare professionals:
Vaccine Efficacy: Given varied vaccine responses in HIV patients, such as with COVID-19 and HBV, how can we optimize the HCV vaccine's effectiveness?
Access and Trust: How can we promote equal access, especially for vulnerable groups, and rebuild public trust?
Global Collaboration: How can we ensure global HCV vaccine access and which partnerships are essential?
Learning from History: Using insights from the U.S. Mpox outbreak, how can we better anticipate and manage health crises?
Policy Evolution: How can we swiftly incorporate evidence-based discoveries into health policies?
Actionable Recommendations for HIV-HCV Management:
To effectively combat HIV-HCV coinfection, we should consider:
Vaccination Strategies: Given varied responses among PLWH, explore frequent dosing, boosters, or double-dosing for the HCV vaccine, as seen with HBV and COVID-19.
Monitoring: Implement regular health assessments post-vaccination and periodic antibody and viral load tests.
Policy and Awareness: Prioritize coinfected individuals in vaccine rollouts, ensure accessibility, and launch awareness campaigns.
Collaborative Efforts: Foster interdisciplinary and global collaborations to holistically address HIV-HCV coinfection.
Addressing Current Deficiencies in Access: Despite curative therapies for HCV being readily accessible for more than decade, HCV remains a pressing public health concern in the United States. Effective vaccine distribution will hinge on addressing the challenges identified by these findings.
By strategically planning with these considerations in mind, we can create a comprehensive plan, prioritizing the well-being of those impacted by HIV-HCV co-infection.
Streamlining Vaccine Delivery and Building Trust in Healthcare
Efficient Vaccine Delivery: Successfully delivering vaccines for HIV-HCV co-infection requires more than just the vaccine. It's about a blend of skilled staff, efficient processes, and the right infrastructure:
Continuous Training: Ensure healthcare professionals are updated on the latest in vaccine administration for coinfections.
Resource Allocation: Balance routine healthcare with specialized vaccine campaigns, especially in resource-limited settings.
Infrastructure Upgrades: Enhance facilities, considering temperature-controlled storage and patient comfort, especially in remote areas.
Addressing Staffing Issues: Bridge the gap in healthcare professional shortages to ensure comprehensive care.
Workflow Efficiency: Use technology and process improvements for a seamless patient experience.
Community Health Worker Integration: Utilize their insights and community rapport to enhance healthcare delivery.
Feedback-Driven Improvements: Create a feedback-rich environment for continuous workflow enhancements.
Rebuilding Trust in Public Health: Trust is the bedrock of public health success, especially in the context of HIV-HCV coinfection:
Recognize Historical Mistrust: Address and make amends for past skepticism, especially among marginalized groups.
Combat Misinformation: Proactively counter myths about vaccines and transmission in the digital age.
Cultural Outreach: Use tailored messages and collaborate with community leaders for effective health drives.
Prioritize Transparency: Regularly update and demystify vaccine processes to foster trust.
Empathetic Engagement: Address vaccine hesitancy with understanding and compassion.
Collaborative Efforts: Partner with trusted community figures to amplify public health messages.
Feedback and Accountability: Implement public feedback mechanisms and act on them to reinforce trust.
In addressing HIV-HCV co-infection, both operational efficiency and trust-building are paramount. Together, they form the pillars of a comprehensive approach to public health challenges.
Conclusion:
Exploring the complexities of HIV-HCV coinfection reveals the depth of challenges and potential of modern healthcare. Each revelation, whether from studies on COVID-19, HBV, or HCV, not only highlight the gaps in our current understanding but also illuminates potential pathways forward. These insights should serve as guiding lights, directing our strategic development and interventions in the context of HIV-HCV co-infection.
However, our journey through this complex landscape is not solely guided by scientific discoveries. Central to our mission is a profound commitment to humanity and equity. It's a pledge to ensure that every individual, regardless of their background or circumstances, receives optimal care. From vulnerable groups, such as people experiencing homelessness or incarcerated persons, informed by lessons from the U.S. Mpox outbreak, to those in remote areas with limited healthcare access, our overarching goal remains steadfast: no one should be left behind.
By fostering collaboration across sectors, continuously updating our knowledge, ensuring investment in public health, and placing community engagement and trust at the forefront of our efforts, we can carve out a promising path. A trajectory that not only addresses the immediate challenges of HIV-HCV coinfection but also sets the stage for a healthier, more inclusive future for all affected individuals.
Health Inequity: Barriers Caused by Abusive Payer Practices
On February 2, 2023, ProPublica, the publication with a mission to “expose abuses of power” and particularly known for their extraordinary thoroughness of investigation, published a piece exposing United Healthcare’s practices denying medically necessary care for one patient, Christopher McNaughton, who is diagnosed with ulcerative colitis. The barriers caused by abusive payer practices is nothing new to patients living with chronic health conditions, including HIV and viral hepatitis.
McNaughton’s disease state is particularly challenging and his treatment was costing United Healthcare about $2 million per year. McNaughton, after receiving repeated coverage denials of live-improving and life-saving medication from United Healthcare, many appeals, conflicting results from “third-party” medical reviewers, and an insistence from United Healthcare that McNaughton’s care was not “medically necessary”, McNaughton’s family sued. What that lawsuit uncovered was a trove of data, recordings, emails, reports, and more that showed distain for McNaughton’s family seeking the care he needs, a cover up of a review which properly identified the medical necessity for McNaughton’s treatment in alignment with his provider’s recommendations, and even more grossly abusive legal tricks to disrupt and complicate the lawsuit process.
McNaughton receives his insurance coverage through Penn State University, where he goes to school and his parents work. Amid all of the turmoil of navigating denials, McNaughton and his family had reached out to the sponsor of his health cover only to find an extraordinary lack of help. The curious detail there is the university’s “health insurance coordinator” turns out to be a full-time employee of United Healthcare, despite no disclosure of that fact on Penn State’s webpages and the coordinator being assigned both a Penn State email address and phone number. Arguably, as the sponsor of the plan, Penn State has a role to play here, too, much like large employers and even the government in public payer programs.
Similarly, the New York Times covered the issue of payers refusing to cover the cost of high-cost, life-saving care, especially when that care includes newer medications. All the advancements in the world can’t change the course of a person’s life, if they can’t afford those advancements or the cost of those advancements might bankrupt a patient. While some public payer programs help to protect patients from these burdens, with complex regulatory requirements, even those are often farmed out to the same private payer entities responsible for McNaughton’s experiences, or those described by the numerous patients included in New York Times’ piece. For Medicaid, these entities are called managed care organizations (MCOs) and in Medicare they can been under the Medicare Advantage program. For many patients in private plans, formulary restrictions are quite common. This is still also true in Medicaid and Medicare Advantage plans, in which a patient and/or their provider has to chase after a series of costly administrative barriers in order to get an exception, which may or may not be denied at the end of the day. Indeed, MCOs and private payers have a history of refusing to add new medications to formularies, arguing “cost-effectiveness”, despite U.S. Food and Drug Administration (FDA) approvals and study designs showing greater efficacy, curative potential, or meeting a unique need. We won’t argue how placing greater value on “cost-savings” in the short-term in the face of more efficacious medication for patients is both morally and ethically abominable. Ultimately, these types of moves just shift cost-burdens to patients, namely in the expense of their health and even their lives. Similarly, newer medications may be placed on higher tiers, requiring higher co-pays or step-therapy (failing a different medication before having access to a newer one). Program designs with high deductibles and copay schemes (sometimes called co-insurance) are leaving more and more patients behind, as evidenced by work from Dr. Jalpa Doshi, a professor at the University of Pennsylvania, which showed rates of medication abandonment increase dramatically as co-pays rise.
Digging into the details of navigation, a Kaiser Family Foundation (KFF) analysis found Medicare Advantage plans forced patients through the process of securing permission from their payer before getting coverage of care – or as we like to call it, getting care – known as prior authorization. In theory, prior authorizations should align with a patient’s medical necessity as identified by their provider, encourage exploration of less costly treatment courses, and save both the plan and patients some money in the process. In practice, prior authorizations, particularly with regard to medication benefit coverage, is used to delay and deny care very similar to auto insurers looking to get out paying for a claim. KFF’s analysis found that in 2021, Medicare Advantage plans received 35 million prior authorization requests. Medicare Advantage only has 23 million enrollees in the contracts reviewed, thus averaging about 1.5 prior authorization per enrollee. The application of these requests is not uniform. Kaiser Permanente (no affiliation with KFF) had a prior authorization rate of 0.3% per enrollee and Anthem had a rate nearly time times higher at 2.9% per enrollee. To be fair, Kaiser Permanente’s network of providers work at entities Kaiser Permanente owns. The overall denial rate of prior authorizations across Medicare Advantage plans in 2021 was about 5% (or 2 million partial or full denials). Navigating denials, as shown in the ProPublica piece, is more than a little bit challenging when payers are bound and determined to limit their own costs. This is easily displayed in seeing the appeal rate for those 2 million denials of coverage was just 11% (or about 220,000). Of those appeals, a full 82% were overturned (or about 180,400). An Office of the Inspector General (OIG) report found more than 10% of a small sample of denials were “inappropriate” and would have generally been covered by traditional Medicare. It’s safe to say, at least 200,000 patients in Medicare Advantage plans alone have experienced delayed, medically necessary care…just because.
All of this incredibly noteworthy as the Biden Administration works to finalize an audit rule for Medicare Advantage plans which is expected to generate some potential $2 billion dollars returned to the government for overbilling, or claiming patients were sicker than they were. These payers are posed to argue simultaneously that patients don’t need medically necessary care despite being sicker than they actually are. It’s truly a remarkable moment to see predatory practices barrel their ways towards one another in the name of payer profits.
The New York Times piece notably reminds readers, when payers or even government officials argue for “cost savings”, they’re not necessarily talking about cost-savings for patients. The Inflation reduction Act, for example, requires manufacturers to refund the difference of medication’s cost rising higher than inflation to the government, but the government isn’t required to pass those savings make it back to patients. Again, to be fair, it might be particularly challenging for public program administrators to ensure those savings make it back to patients because those administrators are already saving plenty of money into their own pockets through bulk purchasing, already negotiating lower costs, and discount or rebate programs. On the double dipping end of the never-ending double dip, these same payers are fighting back against a series of programs run by medication manufacturers known patient assistance programs. The most common form of patient assistance programs is designed as co-pay assistance, helping patients cover their out-of-pocket costs of a particular medication. Right now, payers are using several dirty tricks to make sure they get the benefit of those billing dollars, rather than patients. The HIV + HepC Institute have joined other advocates in suing the Biden Administration over a rule issued under the previous administration to ensure those assistance programs designed to benefit patients and extend access to care are actually being used that way.
States are taking on efforts to combat abusive prior authorization practices introducing or having already passed “gold card” programs, in which providers with a history of successfully meeting prior authorization requirements in previous years may be exempt from needing to go through those processes for a certain period of time. The Biden Administration, for their part have also introduced a set of rules to streamline prior authorization processes, in an effort to expedite the experiences patients and providers have in navigating payment for care. And Congress is expected to see what was known as the Safe Step Act reintroduced this year, a bi-partisan and exceedingly popular piece of legislation aimed at curbing fail-first practices.
But patients, advocates, and policymakers should be careful about unintended consequences and keep an eye out for payers to adjust their practices. In gold-card programs, payers could just expand their prior authorization requirements, narrow formularies, and increase their rate of denials in order to disqualify providers who were previously qualified for the programs. We should also get creative in seeking to close some of these loopholes in the Affordable Care Act’s promise to bring a more equitable and easier to navigate health care landscape. Introducing parity between medical benefit profit caps (known as medical loss ratio) and pharmacy benefit profit caps might encourage (read: require) pharmacy benefit managers to share the savings, have discounts follow patients, expand formularies, and otherwise ensure their program dollars are being used to the maximum benefit of patients.
Jen’s Half Cents: Employers’ Role In Ending the HIV Epidemic, Addressing Health Equity, and Retaining Talent
For more than a year, employer voices have complained about an inability to fill open positions and retain talent. Often referred to in news media as “The Great Resignation”, it is a backdrop that also includes labor voices being dissatisfied with certain aspects of their work environment. A Pew Research survey asked those leaving their jobs for insights as to why and the findings centered around shifts as a result of realizing just how the workplace might look in a more modernized world. For two decades, employers of all stripes argued the necessity of being “in office” and the crisis phase of the COVID-19 pandemic proved just how easily modern technology would allow for greater flexibilities in work hours and work place. It also shook open the reality that many workplaces face the same problems experienced in society at large, with Pew’s findings highlighting a general complaint of “feeling disrespected” as a “major” reason for resignations in 35% of respondents. Other areas of employee complaint included a “lack of opportunities for advancement”, “child care”, and “benefits weren’t good” (arguably, child care could be considered a “benefit” offered by an employer, though very few do as United States labor law does not require such an offering). We’re gonna focus on this benefits piece because of a survey published by the Employee Benefit Research Institute earlier this month.
The survey, entitled “Workplace Wellness Programs and the LGBTQ Community”, showed where some of the contours of employee satisfaction can be defined. The survey found LGBTQ employees were generally less satisfied than their non-LGBTQ peers with their jobs across all income brackets, with an overall 44% of LGBTQ employees being satisfied with their jobs and 61% of non-LGBTQ employees being satisfied. Interestingly enough, the difference with satisfaction with benefits offerings (including health, paid leave, and retirement benefits) was less of a gap than overall job dissatisfaction between these cohorts (overall 34% of LGBTQ employees were satisfied with their employee benefits with 45% of non-LGBTQ employees). More dramatically, the survey found LGBTQ employees would prefer higher wages over enhanced benefits. The reason why might be found in the fact that LGBTQ employees were less likely than their non-LGBTQ peers to qualify for benefits, even if they were as likely or more likely to use them when those benefits were offered. Even when getting into the details of what benefits were offered, LGBTQ employees were about as knowledgeable as their non-LGBTQ peers). So what gives?
First, lets acknowledge that, according to this survey, queer folks are more likely to value “work-life balance” over their non-LGBTQ peers to an extraordinary degree (this area being the greatest difference between these cohorts in “What Workers Value”). LGBTQ employees were more likely to have financial struggles and concerns than their non-LGBTQ peers as well. This, combined with the unique health needs of LGBTQ people and the need to identify a queer-friendly provider and the ever-growing threat of violence under a more and more caustic political atmosphere leading to LGBTQ people valuing retirement benefits as high as their non-LGBTQ peers, helps explain why the dollars matter more than the paper of insurance coverage. This is a plight many queer people can personally identify with pin-point precision: “If my life expectancy doesn’t reach the age of retirement, why should I plan for it?” And that’s not too terribly different from “If my insurance isn’t going to cover competent care of my needs, why does it matter if it’s offered?” These things might work for a cisgender, heterosexual couple with 2.4 kids, but they’re not meant for us.
Let’s start with a concrete example. In 2021, the National Women’s Law Center launched a class action lawsuit against Aetna for its fertility benefit design because the design of the benefit offering and language of the policy required those seeking the benefit to document or attest to 12 month or more of “failed” attempts to conceive through penis-in-vagina sexual activity. That type of benefit necessarily excludes single people, same-sex couples, and couples where at least one partner is transgender.
Periodically over the last year (and honestly for years prior but with less of a focus on the role of employers), I’ve spent time discussing with partners how important it is for employers to consider their role in Ending the HIV Epidemic and addressing issues of Health Equity. With employer-sponsored health plans covering nearly 50% of the country’s population, according to Kaiser Family Foundation, these issues don’t come down to the mere fact of offering health benefits but the quality of those benefits as it relates to employee needs. Benefit designs which race to the bottom of a sponsor’s costs are more likely to have narrowed provider and pharmacy networks and restrictive formularies. And despite the fact that Bostock did not necessarily carve out a means for queer employees to argue benefit design might constitute a discriminatory compensation scheme, that is exactly what our community considers when evaluating their job satisfaction and what “competitive” compensation is supposed to look like. And that’s not unique to LGBTQ people, it’s true for employees of all marginalized status. When speaking with a Black, Women colleague recently she stated most directly “If my network doesn’t include a Black doctor for my kids to see, the plan doesn’t matter to me – I can’t count that as part of my compensation, regardless of how my employer looks at this.”
Adding another layer of consideration for employers, as sponsors with some of the greatest amount of leverage to influence the insurance marketplace, ensuring parity in pharmacy benefits with medical benefits is important. The details of those plans matter. To go beyond birth control as an easily relatable example, if an employee living with HIV doesn’t see the provider they’ve gone to for the last decade in-network or an expansive formulary lacking the burdens of prior authorizations for innovative therapies, they’re not gonna find as much value in that benefit. An employee that has to spend hours every six months navigating a prior authorization for their injectable preventative medication is gonna have less personal “bandwidth” to dedicate to work and find less value in that coverage. They might even decide to go out-of-pocket to over those costs and that translates into a meaningful reduction in wages, from the employee perspective. This also speaks directly to the role employers play in Ending the HIV Epidemic – broader coverage of antiretrovirals and infectious disease providers in-network with lower administrative burdens means employees have more meaningful access to care.
At the end of the day, every employee is a patient. We well know in patient advocacy that speaking to these intimate, personal health needs makes people feel cared about and appreciated. It’s why we do what we do in the first place. If employers want to address employee satisfaction, they could invite their employee resource groups for listening sessions on what adequate health benefit offerings look like and then demand those offerings from their contracted payers. It’s a simple series of actions where employers can come out on top in a variety of ways; addressing health disparities, hearing and meeting employee needs, contributing meaningfully to public health goals around HIV, and overall integrating their stated social values into tangible action.
Honestly, it’s all employees and communities really want from their employers - just a little bit of integrity. Evaluating and elevating health benefit offerings is an excellent place to start.
2022: New Beginnings, New Changes
The Community Access National Network (CANN) ushers in a new beginning with the 2022 New Year, evidenced not only by the changing of the guard with our new President & CEO, but also with some important programmatic changes with our organization. We felt it important to share these changes with you.
Our weekly blog, previously branded as the HEAL Blog (Hepatitis Education, Advocacy & Leadership), is being repurposed to serve our broader mission “to define, promote, and improve access to healthcare services and supports for people living with HIV/AIDS and/or viral hepatitis through advocacy, education, and networking.” As such it is now the CANN Blog, and its areas of interest will focus on HIV/AIDS, viral hepatitis, substance use disorder, harm reduction, patient assistance programs (PAPs), Medicare, Medicaid, and the ongoing Covid-19 pandemic and its impact on public health. In keeping with the desire to monitor broader public health-related issues and appropriately engage stakeholders, our CANN Blog will be disseminated to a larger audience. Therefore, some of you may notice one more email in your inbox each Monday morning since we’re employing our general listserv to share the blog posts. It is our hope that you’ll deem the added email of value and thus maintain yourself on our listserv.
Additionally, our acclaimed HIV/HCV Co-Infection Watch will also be shared with our general listserv. But don’t worry, it only means one additional email each quarter! The HIV/HCV Co-Infection Watch offers a patient-centric informational portal serving three primary groups - patients, healthcare providers, and AIDS Service Organizations. The quarterly Watches are published in January, April, July, and October.
In 2022, our Groups will also be more active. Since 1996, our National ADAP Working Group (NAWG) has served as the cornerstone of CANN’s advocacy work on public policy. Whereas NAWG will continue to engage our HIV/AIDS stakeholders with monthly news updates, we will also convene periodic stakeholder meetings to discuss important issues facing the HIV community. Likewise, our Hepatitis Education, Advocacy & Leadership (HEAL) Group has served as an interactive national platform for the last decade on relevant issues facing people living with viral hepatitis. Periodic stakeholder meetings to discuss important issues facing the Hepatitis community will now complement the HEAL monthly newsletter. If you would like to join either the NAWG or HEAL listserv, then please do so using this link.
CANN will also launch its 340B Action Center this year. It is designed to provide patients with content-drive educational resources about the 340B Drug Discount Program and why the program matters to you. The importance of the 340B Program cannot be under-stated, and CANN remains committed to taking a balanced “money follows the patient” approach on the issues facing the program and advocating for needed reforms.
Finally, like most advocacy organizations, CANN is constantly evaluating whether it is safe (or not) to host in-person stakeholder meetings. Covid-19 has changed the advocacy landscape. Over the last two years our two signature meetings (Community Roundtable and Annual National Monitoring Report on HIV/HCV Co-Infection) have been hosted virtually, rather than in-person. CANN is taking a “wait and see” approach on how best to proceed in 2022 with these events. We will keep you apprised of our decision.
As we close the door on 2021 and open it for 2022, CANN looks forward to working with all of its community partners, industry partners, and you!
2021: A Year in Reflection
The end of 2021 is upon us and that makes this a timely opportunity to reflect on the work by the Community Access National Network (CANN). During an exceedingly busy news cycle, we have published fifty blogs (including this one) on a variety of topics ranging from the latest on policy and regulatory issues, as well as some personal perspectives. Our HIV-HCV Coinfection Watch and our Annual Monitoring Report tracked Hepatitis C (HCV) therapies covered under the State AIDS Drug Assistance Programs, Medicaid, Veterans Administration, as well as patient access via patient assistance programs, and other relevant news items affecting our patient community. We also conducted a community roundtable seeking to highlight the impacts of Covid-19 on public health programs aimed at addressing HIV, HCV, and substance use disorder (SUD).
Notably, CANN published the following six-part series designed to educate patients on various aspects of the 340B Drug Discount Program:
· A Patient’s Guide to 340B: Why the Program Matters to You
· A Patient’s Guide to 340B: Why Transparency Matters to You
· A Patient’s Guide to 340B: Why Accountability Matters to You
· A Patient’s Guide to 340B: Why the Decline in Charity Care Matters to You
· A Patient’s Guide to 340B: Why the Middlemen Matters to You
· A Patient’s Guide to 340B: Why Program Reform Matters to You
With Congress engaged in high-conflict communication, to abuse a euphemism, navigating public policy developments and pertinent issues to patients can be challenging. CANN remains committed to being an essential source of two-way communication, information, and education wherein patients write the narrative driving policy reforms and priorities. In this, we are ever grateful to the patients and caretakers who have engaged with us at every turn. Your stories matter and you are not alone in your experiences.
The diverse partnerships behind this work are critical to our success and as we end the year, we want to offer our gratitude to these essential partnerships, ranging from other patient advocacy organizations, public health associations, and industry partners.
The issues affecting our public health space of patient advocacy have not relented this year. Covid-19 has only emphasized the need to ensure these programs are effective and efficient while also highlighting the existing weaknesses and strengths of these programs. To be clear, the structural and pervasive drivers of health disparities have been named; racism, sexism, classism, ableism, and all other biases which reflect a moral justification for out ethical failings must be addressed in tandem with policy changes and adequate public health program funding in order for us to succeed in these fights for patient lives. Health equity cannot be meaningfully segregated from the policy mechanisms in which these disparities have survived in the face of another pandemic – when our collective awareness of these inequities and leverage to progress on these issues should have been their strongest and yet were not.
It’s with these things in mind, we want to leave you with the enduring sentiment that next year offers us yet another opportunity to approaches these challenges with fresh eyes and fresh ideas. We are indeed stronger together and we sincerely look forward to working with you all to move closer in realizing a world of greater access to care, fewer and smaller health disparities, and, ultimately, a more fair and loving environment in which to live our lives and raise our families.
Author’s note: I often end certain professional meetings with telling my colleagues “Love ya’ll”. It’s a sentiment I mean to depths of my soul. I am fortunate to work with some of the most amazing people in the world – folks who share an unbridled commitment to improving the lives of those around them. It’s from this same space I wish to offer each of you reading this a moment to breathe and the same open heartedness. I want to leave you all with a short story that has shaped me in more ways than I can count, The Perfect Heart, and an encouragement to tell someone you love them as soon as you can. May this next year be gentler with us all and find us giving away more pieces of our hearts.
Highlights from the Viral Hepatitis National Strategic Plan
On January 7th, the Department of Health and Human Services announced publication of an updated plan to eliminate viral hepatitis in the United States. This “roadmap” coincides with HHS’s release of the first Sexual Transmitted Infections (STI) National Strategic Plan on December 18th, 2020, and an update to the HIV National Strategic Plan on January 15th, 2021.
Notably, these documents reference one another and specifically call for integrated efforts to tackle these syndemics across stakeholder groups, specifically including substance use-disorder as part of a “holistic” cohort. Additionally, each contains a near identical vision statement:
- The United States will be a place where new viral hepatitis infections are prevented, every person knows their status, and every person with viral hepatitis has high-quality health care and treatment and lives free from stigma and discrimination.
- The United States will be a place where new HIV infections are prevented, every person knows their status, and every person with HIV has high-quality care and treatment and lives free from stigma and discrimination.
- The United States will be a place where sexually transmitted infections are prevented and where every person has high-quality STI prevention, care, and treatment while living free from stigma and discrimination.
All three vision statements end with the following: This vision includes all people, regardless of age, sex, gender identity, sexual orientation, race, ethnicity, religion, disability, geographic location, or socioeconomic circumstance.
Each plan addresses a limited but indefinite list of social determinants of health such as socio-economic burdens impeding access to care, including racism, intimate partner violence (IPV), and stigma and acknowledges discrimination against sexual and gender minorities (SGM). COVID-19 is mentioned repeatedly as underscoring and providing a highlight to the United States’ excessive health disparities, giving a nod to the unfortunate…”opportunity” the pandemic has provided health care advocates working with or as a part of these highly affected, highly marginalized communities. “The pandemic has exacerbated existing challenges in the nation’s public health care system, further exposing decades, if not centuries, of health inequities and its impact on social determinants of health.” Plans also acknowledge personnel and resources from programs addressing STIs, viral hepatitis, and HIV have been heavily redirected toward efforts to address COVID-19.
All plans call for better data sharing across providers and reporting agencies and an increase in surveillance activities, with an emphasis on local-level efforts to rely on local data, rather than national-level trends. Each plan also calls for expanded testing, interventions, linkage to care, provider and community education, and access to treatment, including incarcerated populations. The Viral Hepatitis National Strategic Plan (VHNSP) described “poor quality and a paucity of data” as clear impediment to meeting the goals of the plan. Sparring no stakeholder with access, the plan highlights a need for data sharing among correctional programs, health insurers, public and private health systems, mental and behavioral health, public health entities, and more.
The VHNSP also acknowledges opportunities to take lessons from the fight against HIV and the need to integrate “treatment as prevention” as a powerful tool in combating new HBV and HCV infections.
The Viral Hepatitis Strategy National Plans notes the following key indicators:
On track for 2020 targets:
HBV deaths
HCV deaths
HCV deaths among Black People
Trending in the right direction:
HBV vaccine birth dose (87% for people born between 2015-2016 by 13 months, WHO recommends 90% by 13 months)
HBV vaccine among health care personnel
HBV-related deaths among Black people
HBV-related deaths among people over the age of 45
Not on track:
New HBV infections
New HCV infections
New HBV infections among people 30-49 years of age
HBV-related deaths among Asian Americans and Pacific Islanders
New HCV infections among people of 20-39 years of age
New HCV infections among American Indians and Alaska Natives
The plan recognizes an 71% increase in HCV infections in reporting years 2014-2018 and points toward a strong data correlation between these new infections and the opioid epidemic, based on local area reporting data. Care related challenges include lack of personal status knowledge, perinatal transmission, and cost of curative treatment.
The plan states ideal engagement in various activities across an astoundingly broad scope of stakeholders including faith-based organizations for outreach and education, stigma and anti-bias training among all client-facing personnel, the opportunity to engage comprehensive syringe services programs as an outlet to provide HCV medication and more traditional services like referral for opioid-use disorder, educating providers and employers about federal protections for people with viral hepatitis, increasing awareness through school education programs – specifically culturally sensitive and age-appropriate sex education programs.
From issues of criminalization laws to lack of cohesive data collection, overall, the plan is very welcomed, comprehensive approach toward addressing viral hepatitis. With the STI and HIV plans mirroring very closely.
While the plans call stakeholders to address economic barriers to care and other social determinants of health, specifics are lacking. Stakeholders may wish to consider some of the priorities in the Biden administration’s public health approach including hiring from affected communities (including reducing or allowing alternative education requirements like live-experience or consideration of on-the-job training opportunities). These lofty goals may also require regulatory changes in order to implement and realize them fully (i.e. mechanisms incentivizing correctional facilities and the Veterans Administration to share data with local or state health departments and establish linkage to care programs). Private funders would be wise to take advantage of this opportunity and fund innovative, comprehensive pilot or demonstration projects. Advocates would be wise to leverage these documents when seeking state-level regulatory changes and advocating for federal funding and program design.