HCV Cases Down, But Not Out

The Centers for Disease Control and Prevention (CDC) recently released data analysis from 2022 indicating a 6% decrease in new viral Hepatitis C (HCV) infections, a revelation that leaves infectious disease specialists cautiously optimistic. Yet, despite the existence of a cure, thousands of Americans still die needlessly from this disease each year. Systemic barriers – restrictive insurance policies, inefficient testing, and neglect of marginalized communities – prevent many from accessing the lifesaving treatment they need. These failures fuel a public health crisis, with over 14,000 Americans dying from HCV complications in 2020 alone. The most vulnerable suffer the worst consequences, including young people, people impacted by substance use and the justice system, and those experiencing homelessness. While experts remain cautious, this decline after a decade of steady increases could signal a turning point. "We've had a decade of bad news…I am cautiously encouraged," said Daniel Raymond, director of policy at the National Viral Hepatitis Roundtable. "This could be a sign the tide has turned."

Systemic Barriers to HCV Care

Despite the existence of a cure, a shockingly low percentage of those with HCV achieve viral clearance. Systemic barriers rooted in insurance practices, fragmented testing, and neglect of marginalized communities prevent countless Americans from accessing the treatment they need.

Insurance Roadblocks

Insurance restrictions present a formidable obstacle to HCV treatment, often creating a maze of administrative hurdles. State Medicaid programs frequently require proof of months-long sobriety, specialist-only prescriptions for treatment, or evidence of existing liver damage before approving care. These arbitrary restrictions fly in the face of medical best practices and delay treatment, increasing the risk of liver failure, liver cancer, and even death.

Even those with commercial insurance face barriers to HCV care. Despite the high cost of HCV medications, many insurers impose prior authorization requirements. These delays, coupled with restrictive formularies and high copays, discourage patients and providers. The fact that only about 50% of commercially insured patients in a recent CDC study achieved viral clearance speaks volumes about how deep-seated this issue is, impacting people regardless of their insurance status.

The Burden of Diagnosis

A shocking number of people live with Hepatitis C without knowing it, with the CDC estimating over 40% of those infected are unaware of their status. This highlights a problem of insufficient screening and inefficient testing procedures. The current multi-step diagnostic process, requiring separate blood draws for the initial HCV antibody check and subsequent confirmation, creates logistical barriers. Many face issues like needing multiple appointments, additional travel costs, or potential delays in results.

Populations most impacted by HCV, including young people, those experiencing homelessness or substance use, and people who are incarcerated, often face additional challenges accessing even basic healthcare. Routine HCV screening within prisons, expanded outreach testing in underserved communities, and integration of HCV screening into substance use treatment programs are essential to reaching those at heightened risk.

Modern medicine offers rapid point-of-care tests for many conditions, including HIV. Similar technology exists for HCV, yet approval and widespread use lag behind. Streamlining the diagnostic process through rapid, single-visit testing would revolutionize care by connecting people to treatment far earlier, minimizing disease progression and preventing transmission.

How Barriers Foster Disparities

HCV treatment disparities highlight a system that consistently fails our most vulnerable populations. Cure rates are lowest among those without insurance and people on Medicaid, a stark reflection of restrictive insurance practices and a lack of support to navigate complex healthcare systems. The disease disproportionately impacts marginalized communities, including:

• Young People: Driven by the opioid crisis, new HCV cases have surged among millennials and Gen Z, with over 60% of new chronic infections found in these younger populations. This highlights the need for increased prevention and treatment efforts tailored to this age group.

• People Experiencing Homelessness: Lack of stable housing leads to missed appointments, medication storage issues, and prioritization of immediate survival over long-term health concerns.

• Incarcerated People: An estimated 13% of those moving through prisons and jails annually have HCV, yet treatment is rarely offered. Post-release, they face navigating insurance and accessing care with limited support.

• Those with Substance Use Disorders: Stigma and outdated treatment requirements often bar this population from receiving HCV care. Integrated treatment models, combining HCV care with substance use treatment and harm reduction services, are vital to reaching this underserved population.

Untreated HCV is a Public Health Threat

The systemic barriers discussed – restrictive insurance practices, the cumbersome diagnostic process, and inadequate outreach to marginalized communities – contribute to a critical public health issue: a significant portion of people living with HCV remain undiagnosed and untreated. This compromises their health and increases the risk of unknowingly transmitting the virus through unprotected sex or sharing drug paraphernalia. Ensuring equitable access to HCV testing, treatment, and care is essential to protecting public health. By dismantling these barriers and ensuring everyone has the opportunity to be diagnosed and cured, we can protect those most vulnerable and achieve a future free from HCV.

Cost of Inaction

The human and economic toll of failing to address HCV is staggering:

• Deaths: More than 14,800 Americans died from HCV-related complications in 2020.

• Liver Cancer: HCV is a leading cause of liver cancer, with rates of new cases rising 38% between 2003 and 2012.

• Economic Burden: The Biden Administration's proposed HCV elimination plan projects that over 10 years, it would prevent 24,000 deaths and save $18.1 billion in healthcare costs.

National Strategy & the Biden Plan

The persistent low cure rates, widening health disparities, and the staggering human and economic cost of untreated HCV reveal that relying on any single solution won't achieve elimination. A coordinated national strategy is essential to overcome existing systemic failures and ensure that no one falls through the cracks. The Biden Administration's proposed HCV elimination plan offers a transformative framework for addressing these challenges, but its success hinges on learning from the lessons of past initiatives.

Key Elements of the Biden Plan:

• The "Netflix Model": To address insurance barriers, this model proposes a subscription approach, where the government negotiates a fixed price with drug companies to provide treatment for vulnerable groups (uninsured, Medicaid, incarcerated, and others). This simplifies coverage and ensures those who need it most can access life-saving medication.

• Rapid Testing & Community Focus: Investment in rapid point-of-care testing would enable same-day diagnosis and treatment initiation, revolutionizing care. Federal funding to support expanded testing in non-traditional settings, like mobile clinics, prisons, and substance use treatment centers, would directly reach the populations most impacted by HCV.

• Federal Support & Coordination: Centralized guidance, resources, and funding for healthcare providers are crucial for expanding screening, streamlining care models, and educating both providers and communities.. This investment in public health infrastructure would create a ripple effect, increasing capacity for effective HCV treatment long-term.

Subscription models like those piloted in Louisiana and Washington have demonstrated the potential to reduce medication costs. However, as Jen Laws, CEO of CANN, highlights, even with affordable drugs, systemic shortcomings remain a significant barrier to care. The Biden Plan must recognize that:

• Price isn't the only issue: Drug costs are a major factor but investment in community-based healthcare infrastructure, provider training, outreach programs, and addressing logistical barriers to care and testing are just as crucial.

• Reinvestment of savings is key: The substantial cost-savings generated from the "Netflix model" must be reinvested directly into strengthening public health systems, ensuring long-term success.

• Policy-driven solutions are essential: Federal legislation mandating opt-out HCV screening in hospitals, universal screening in prisons, and cost-sharing limits on commercial insurance plans would provide a powerful foundation to support and guide the Biden Plan.

Addressing Disparities

The Biden Plan's focus on equity directly confronts the health disparities highlighted earlier. By specifically targeting uninsured and Medicaid populations, it helps ensure that financial barriers don't translate into needless deaths. The emphasis on community-based testing and integrated treatment models is crucial for reaching marginalized populations like:

• Young People: Increased outreach and testing aligned with this age group is vital to curbing the surge of new infections fueled by the opioid epidemic.

• People Experiencing Homelessness: Integrating HCV screening and care into supportive services for this population is essential to address their often complex healthcare needs.

• Incarcerated People: By treating HCV within prisons, not only would patient health outcomes improve, but it could also help prevent transmission within facilities and in communities upon release.

• Those with Substance Use Disorders: The plan's support for harm reduction strategies and integrated treatment models recognizes the need to address HCV without discriminatory sobriety restrictions.

The Cost-Benefit Argument

The Biden Plan isn't just compassionate; it's a sound fiscal investment. Projections indicate it would save 24,000 lives and $18.1 billion in healthcare costs over ten year. By preventing long-term HCV complications like liver failure, cancer, and transplants, we can reduce the significant future economic burden of this preventable disease.

Despite a small, yet significant decrease in new HCV infections, there remains the staggering toll of untreated HCV. The promise of the Biden Plan demands immediate action, according to advocates, because it addresses preventable deaths, widening health disparities, and the economic strain of a solvable public health crisis. It will take a larger, systemic approach to remove many of the barriers impending the elimination of Hepatitis C in the United States.

Closing the EHB Loophole: Louisiana Leads, But National Action is Needed

"Jason," a Utah AIDS Foundation client, confronted a brutal truth in the wake of his HIV diagnosis: a healthcare system more interested in profits than patients. Faced with a staggering $3,200 co-pay for his HIV medication—well beyond his financial reach—Jason's plight was exacerbated by his insurance company's implementation of a co-pay accumulator policy. This policy effectively nullified the assistance he once relied on, leaving him stranded without his medication for months. "I felt scared and discouraged when I was told I have a $3,200 co-pay to pick up my HIV meds. I don’t even make that much money each month," Jason shared, his voice a stark indictment of a system failing its most vulnerable. His story, spotlighted by The Utah All Copays Count Coalition, underscores a pervasive issue: patients across the nation are cornered into impossible choices between health and financial ruin, casualties of an insurance industry's practices that blatantly prioritize margins over meaningful care.

Understanding the Problem

Jason's heartbreaking story sheds light on interconnected issues fueling the healthcare affordability crisis: co-pay accumulators and the Essential Health Benefits (EHB) loophole. These tactics have a devastating effect on patient well-being, so let's break them down:

Co-pay Accumulators: A Profit-Driven Scheme at the Expense of Patients

These programs allow insurers to take the value of manufacturer-provided coupons or patient assistance and apply it towards an annual deductible, but not towards a patient's out-of-pocket maximum. This means even with generous assistance, patients can face thousands of dollars in additional costs, forcing them to ration medication or abandon treatment altogether. The numbers reveal the widespread impact:

• The AIDS Institute reports that co-pay accumulator adjustment programs (CAAPs) are present in a shocking 66% of individual Affordable Care Act (ACA) marketplace plans nationwide, with some states showing 75-100% of available plans utilizing these tactics.

Co-pay Maximizers: A Further Threat to Affordability

Insurers are increasingly employing an even more severe tactic known as 'co-pay maximizers'. These programs set a patient's co-pay to the full amount of available assistance, even if it's intended to cover an entire year's medication cost. Unlike accumulators, which prevent assistance from counting towards the out-of-pocket maximum, maximizers essentially 'use up' all available assistance in a single payment. This leaves patients facing the full, often unaffordable, cost of medication for the rest of the year. The combined use of maximizers and accumulators is becoming increasingly common, leaving patients with limited options and magnifying the financial burden of life-saving treatments. A staggering 72% of commercially insured beneficiaries in the United States were enrolled in plans with co-pay maximizers as of 2023, according to a Drug Channels analysis.

This highlights the alarming prevalence of these practices and the immense pressure they place on patients struggling to manage chronic conditions.

The Essential Health Benefits (EHB) Loophole: Insurers Exploit Gaps in Coverage

Under the ACA, states have flexibility in selecting the 'essential' healthcare services that insurers must cover. Some insurers manipulate this system by classifying necessary medications (especially for chronic conditions) as 'non-essential'. This lets them continue using co-pay accumulators and maximizers on these medications, further undermining patient affordability.

• Centers for Medicate & Medicaid Services’ (CMS) data reveals that in many states, critical treatments for chronic disease management are not guaranteed coverage under 'essential' benefits. This means patients could be subject to accumulators and maximizers indefinitely, locked in a cycle of escalating costs even when reaching their out-of-pocket maximums.

The takeaway is clear: these practices prioritize the shareholder profits of insurance companies over the health and well-being of patients, especially those battling chronic and complex conditions.

Federal Action – Progress and Pitfalls

The CMS Notice of Benefit and Payment Parameters for 2025 signals a notable yet incomplete step towards remedying the healthcare affordability crisis. It attempts to close the Essential Health Benefits loophole starting in 2027 by mandating routine, non-pediatric dental coverage as an essential benefit. While seemingly tangential, this amendment serves as a precursor to addressing broader coverage issues, demonstrating the potential to mitigate part of the financial burdens that patients like Jason face. However, it underscores a significant gap in the rule's scope—its silence on co-pay accumulators and maximizers.

Limitations of the CMS Rule Change

The rule change’s failure to directly address co-pay accumulators and maximizers leaves a significant gap in patient protection. These payor-driven barriers systematically undermine patient affordability and access, especially for those managing chronic conditions. The absence of direct action against these schemes allows insurers to deploy cost-containment strategies that, while ostensibly designed to control expenditures, place the financial burden squarely on patients.

This oversight perpetuates financial hardship and deepens healthcare disparities. Accumulator and maximizer practices disproportionately affect marginalized populations, highlighting the limitations of regulatory changes that fail to comprehensively address the complex dynamics of healthcare affordability and access.

Without targeted measures to dismantle these financial mechanisms, efforts to expand coverage and close loopholes may achieve only superficial improvements. A significant portion of the population, particularly those managing chronic diseases, will continue to face insurmountable financial barriers to accessing essential treatments. This situation underscores the need for a more holistic approach to healthcare reform—one that confronts the financial mechanisms impairing patient care and seeks to eliminate systemic practices that prioritize profit over patient well-being.

Court Challenges: A Victory Shadowed by Continued Uncertainty

The battle against co-pay accumulators achieved a notable legal milestone when a federal court ruled these practices violated the Affordable Care Act's mandates. Despite this victory, the landscape remains fraught with ambiguity, largely due to the federal government's tepid response. The government’s retraction of its appeal in 2022, while upholding the court's decision, did not establish a nationwide prohibition on co-pay accumulators, leaving insurers in a legal gray area.

The HIV+Hepatitis Policy Institute has spotlighted the risk posed by the federal government's refusal to enforce the court's ruling against co-pay accumulators, shifting focus instead to addressing insurers' classification of certain drugs as “non-essential health benefits.” While the final 2025 Notice of Benefits and Payment Parameters rule curbs the classification of covered drugs beyond state benchmarks as non-essential, the government's inaction on co-pay accumulators marks a troubling disconnect between legal victories and their practical implementation.

This gap between legal wins and real-world application emphasizes the need for interventions at the state level. Louisiana's SB 210 emerges as a key measure, proposing tangible solutions to bridge the gap left by federal inaction and protect patients from the financial burdens imposed by insurers' exploitative tactics.

State Solutions: Louisiana as a Model

Louisiana's Legislative Response with SB 210

In an assertive move to safeguard healthcare affordability and accessibility, Senator Bob Owen's SB 210 targets the mechanisms of co-pay accumulators and the Essential Health Benefits (EHB) loophole. The legislation mandates comprehensive coverage under EHBs and holistic accumulator protections, ensuring all cost-sharing payments contribute towards the ACA's out-of-pocket maximums.

This legislative approach not only challenges the status quo but also highlights Louisiana's proactive stance in addressing healthcare disparities. By mandating that insurers recognize all federally designated EHB services and medications as essential, SB 210 directly confronts insurers' manipulative practices, ensuring patients receive the comprehensive coverage promised under the ACA.

Addressing the ‘Endless Deductible’

In a letter to the Louisiana State Senate Insurance Committee, CANN President and CEO Jen Laws warns that without robust protections like SB 210, insurers can impose what patients call "the endless deductible." This term illustrates the loophole that allows insurers to employ exploitative accounting practices, negating the ACA's intent to cap patient spending on healthcare. SB 210's provisions aim to close this loophole, ensuring patients are not burdened with exorbitant costs for essential treatments, thus preserving the ACA's core promise of affordable care.

In his letter, Laws reveals that Louisiana's health plan benchmarks do not guarantee coverage for essential cancer treatments such as radiation or chemotherapy, underlining the significance of SB 210. By ensuring that expenditures for such critical treatments are counted towards patients' out-of-pocket maximums, the bill offers a lifeline to those facing the daunting financial implications of treating life-threatening conditions. This measure is pivotal in bridging the gap left by the current healthcare system's shortcomings, providing patients with much-needed financial relief and access to life-saving treatments.

A Blueprint for National Reform

Louisiana's initiative serves as a compelling model for tackling the challenges posed by ambiguous EHB classifications, federal inaction, and exploitative co-pay practices. SB 210's success could inspire a wave of legislative efforts across the United States, advocating for a healthcare system that prioritizes patient well-being over payor profits. This approach highlights the potential for state-level innovations to influence national healthcare policy, paving the way for reforms that ensure healthcare accessibility and affordability for all, especially those living with chronic and life-threatening conditions.

Call to Action

The legislative changes proposed in Louisiana represent a critical juncture in the fight for healthcare affordability and access. To realize the full potential of these reforms, a concerted effort is needed from key stakeholders across the healthcare ecosystem:

For U.S. Policymakers:

Legislators at both state and federal levels must embrace proactive strategies to close the EHB loophole and regulate co-pay accumulator and maximizer use. Crafting and enacting policies that guarantee comprehensive coverage of essential health benefits and ensure all forms of patient assistance contribute towards out-of-pocket maximums are essential steps toward protecting patients from undue financial strain. Supporting state-level initiatives like Louisiana's SB 210 can serve as a foundation for broader national reforms, underscoring the importance of legislative action in safeguarding patient interests.

Healthcare Providers:

Medical professionals and healthcare institutions play a crucial role in advocating for their patients' rights and navigating the evolving insurance landscape. By staying informed about the implications of insurance policies on treatment access and affordability, healthcare providers can better support their patients in accessing the care they need. Engaging in policy discussions and supporting legislative efforts to address the EHB loophole and co-pay accumulator issue are necessary contributions to the broader push for healthcare reform.

Community Advocates and Patients:

The voices of patient advocacy groups and people affected by the healthcare system's complexities are instrumental in driving change. By raising awareness about the challenges posed by the EHB loophole and co-pay accumulators, mobilizing communities to demand reform, and sharing personal stories, advocates can influence policy decisions and encourage insurers to prioritize patient needs. Engaging in public discussions and advocating for policies that protect patients from harmful insurance practices are critical steps in building a more equitable healthcare system.

Actionable Next Steps:

• Reach out to state and federal representatives to express support for policies that ensure comprehensive coverage of essential health benefits and address the challenges posed by co-pay accumulators.

• Educate oneself and others about the impact of the EHB loophole and co-pay accumulators on healthcare affordability and access, leveraging resources and information provided by reputable patient advocacy organizations.

By uniting in the pursuit of meaningful healthcare reform, stakeholders across the spectrum can contribute to a future where healthcare accessibility and affordability are realities for all, especially for those facing chronic and life-threatening conditions. The journey toward closing the EHB loophole and eliminating unfair insurance practices demands collective action and unwavering commitment to patient well-being. Let's join forces to advocate for a healthcare system that truly serves the needs of its patients, ensuring equitable access to essential treatments and protections against financial hardship.

Focus on Hepatitis B: WHO's New Guidelines and Their Global Implications

At the 2024 Asian Pacific Conference for the Study of Liver Disease in Kyoto, the World Health Organization (WHO) introduced transformative guidelines for the prevention, diagnosis, care, and treatment of chronic Hepatitis B virus (HBV) infection. HBV is a major global health challenge affecting approximately 296 million people worldwide. If left untreated, it results in nearly 900,000 deaths annually from complications like liver disease and cancer.

The new guidelines aim to increase testing access and expand treatment eligibility, particularly in sub-Saharan Africa which accounts for 70% of all new HBV infections. They provide evidence-based recommendations based on updated scientific data about antiviral effectiveness, diagnostic test performance, and service delivery models. By simplifying testing and extending treatment eligibility, these guidelines address longstanding access barriers. They represent a significant step towards achieving the 2030 goal of eliminating HBV as a major public health threat.

Key Changes in the New Guidelines

The WHO's new guidelines focus on making HBV testing and treatment more accessible for those who need it most. Key changes include:

Simplified Testing Recommendations

The WHO's revisions highlight the importance of streamlined testing methods such as dried blood spot sampling and point-of-care viral load assessments. The goal is to expand early diagnosis. Coupled with community-based testing, these methods aim to enhance accessibility, particularly in areas with limited resources. They facilitate early intervention and aim to reduce the stigma associated with traditional diagnostic procedures.

There is also an emphasis on expanding testing among pregnant women to prevent transmission of HBV from mother to child during birth or through breastfeeding, which is the primary way the virus is transmitted.

Previous recommendations advised pregnant women with active HBV infection to receive temporary treatment until their child was fully vaccinated against the disease. The new guidelines take into account that not every health facility has the tests to determine if a woman has an active infection. They suggest that health care providers consider administering prophylaxis to pregnant women with HBV, even if they cannot determine the status of their infection.

Expanded Treatment Eligibility and Access

Nearly 300 million people currently live with HBV, and the disease causes approximately 820,000 deaths each year. Prior guidelines typically limited treatment to those with advanced liver disease or significant fibrosis, which made it challenging for patients to access care until their conditions had substantially deteriorated. The new guidelines propose a more inclusive treatment approach, expanding eligibility for antiviral therapy to millions more people. This change should increase the portion of people living with HBV eligible for treatment from the current 8% to 15% to around 50%. The World Health Organization now strongly recommends treatment for all people aged 12 and older who have chronic HBV and exhibit early signs of liver damage or other indicators, including co-infections such as HIV. The previous guidelines often recommended treatment only at more advanced disease stages and for patients above 30 years old, a significant hardship considering that 25% of infections in the region occur in people under 20.

The updated guidelines provide a more comprehensive approach to the management of hepatitis B virus (HBV) infection. These guidelines notably broaden the recommended treatments. Previously, the guidelines strongly advocated for single-drug therapies as the preferred treatment option. However, in recognition of the ongoing shortage of these single-drug therapies in some low- and middle-income countries, the updated guidelines now also endorse two dual regimens as alternate treatment options when the preferred monotherapies are not readily accessible.

This shift in treatment recommendations is a direct response to the pressing need to ensure that effective therapies are available in all regions, irrespective of their economic status. The scarcity of the preferred monotherapies in some parts of the world has necessitated the inclusion of the dual regimens in the guidelines.

Furthermore, the expansion of the recommended treatments is grounded in a growing body of scientific evidence. This evidence increasingly suggests that initiating treatment at an earlier stage of the disease can have a significant positive impact on long-term health outcomes for people living with HBV infection. Early intervention also has the potential to markedly reduce transmission rates. By taking this approach, we can address the global HBV burden more effectively and ensure a healthier future for those affected by this disease.

Improving Patient Support

Improvements in patient support mechanisms, such as the introduction of peer support and digital adherence tools, show a thorough and empathetic understanding of the many challenges faced by people living with chronic Hepatitis B virus (HBV) infection. These patient-focused initiatives, an evolution of the regulations that governed HIV testing and treatment, are based on real-world experiences and insights. They are carefully designed with two critical objectives in mind.

First, they aim to significantly enhance treatment adherence. This is crucial, as consistent adherence to prescribed treatment regimens is a key factor in the success of long-term antiviral therapy. Without proper adherence, the effectiveness of the treatment is compromised, potentially leading to less than optimal health outcomes for the people affected.

Second, these initiatives also aim to reduce the risk of drug resistance. Drug resistance is a major concern in managing chronic diseases like HBV, as it can make first-line treatments less effective over time. This can complicate the disease management process and potentially lead to worse health outcomes.

By addressing the dual challenges of treatment adherence and drug resistance, these improved patient support mechanisms represent a significant step forward in the comprehensive and patient-centered management of chronic HBV.

Integrating HBV into Existing Services

The guidelines suggest integrating existing HIV, tuberculosis, and primary care programs to offer streamlined services for Hepatitis B Virus (HBV). This leverages the existing infrastructures, resources, and patient engagement strategies of these programs, potentially resulting in early detection and effective management of HBV.

By making use of these existing programs, healthcare systems can effectively expand HBV services. This method ensures patients receive coordinated care for their various health needs, fostering a more holistic patient care approach. Not only does this integration yield immediate patient benefits, but it also presents long-term advantages for the entire healthcare system, aiding healthcare providers in efficient resource allocation and reducing overall costs. Additionally, the improved patient outcomes resulting from this integration could decrease the long-term expenses associated with managing chronic conditions.

Potential Impact of the Guidelines

The global impact of these guidelines could be transformative. By simplifying the diagnostic process and expanding treatment access, the WHO aims to significantly increase the rate of early HBV diagnoses. This method aims to improve health outcomes for people living with HBV, reducing liver cancer, cirrhosis, and other disease-related complications. Additionally, preventing HBV progression to severe liver diseases could substantially lessen the economic burden on global healthcare systems. This aligns with the WHO's goal of eliminating HBV as a public health threat by 2030. Experts anticipate:

• Increased Diagnosis and Treatment: Expanded eligibility and easier testing could lead to more HBV diagnoses and access to lifesaving antiviral therapy.

• Improved Health Outcomes: Earlier intervention and broader treatment may reduce rates of liver cancer, cirrhosis, and HBV-related deaths.

• Reduced Healthcare Costs: Preventing long-term HBV consequences could alleviate strains on healthcare systems and lower economic burdens.

Considerations for the United States

The WHO's new Hepatitis B guidelines could have significant implications for U.S. healthcare policy. Domestic adoption could improve HBV management in the U.S. and demonstrate the country's commitment to global health initiatives. While the WHO guidelines provide a global framework, their implementation in the U.S. requires policy-level action. Advocates could focus on:

• Streamlining Screening Programs: Encouraging community-based testing and simplifying recommendations could raise diagnosis rates, particularly in underserved populations.

• Expanding Access to Treatment: Prioritizing the removal of insurance-based barriers and addressing treatment access disparities.

• Implementing Supportive Care Models: Exploring strategies like peer support programs to improve patient adherence and ensure everyone benefits from treatment.

Aligning with the WHO's Hepatitis B guidelines requires substantial shifts in U.S. public health policy. This includes integrating streamlined testing protocols into existing healthcare frameworks for more accessible diagnostic services. Expanding treatment eligibility may require revising healthcare policies to include a broader range of HBV-affected populations. This could mean changes in insurance coverage and healthcare provider guidelines to implement broader treatment protocols.

The U.S. can lead global efforts in adopting these guidelines through its role in global health initiatives. By advocating for and implementing these guidelines, the U.S. can demonstrate the effectiveness of simplified and accessible HBV care, encouraging other nations to follow. This leadership role can include providing technical support, sharing best practices, and offering financial assistance to resource-limited countries, thereby enhancing global health security and moving closer to eliminating HBV as a public health threat by 2030. Researchers have estimated that $6 billion annually is needed to meet the global hepatitis targets in 67 low- and middle-income countries alone.

The WHO's revised guidelines for Hepatitis B management represents a significant step towards addressing this global health challenge. They provide a plan for simple, accessible, and effective HBV care, with a focus on early diagnosis and expanded treatment eligibility to enhance patient outcomes and reduce transmission.

COST CONTAINMENT vs. CARE EQUALITY: How Health Disparities Among Chronic Health Conditions & Rare Diseases are Fueled by Payor-Driven Barriers

****Reprinted with permission from PlusInc****

By: Brandon M. Macsata and Marcus J. Hopkins

Despite being among the wealthiest and most educated societies, health disparities in the United States are a consistent risk among specific population groups.[1] Black and brown Americans don’t enjoy the same access to care as their white counterparts; women experience more years of poor health than men;[2] age impacts health outcomes,[3] as do gender identity,[4] sexual orientation,[5] and geographic location.[6] The humanistic and environmental factors driving health disparities are only made more complex by the fragmented healthcare delivery system, which is known for payors, including public and private health insurers, putting up barriers between patients, their providers, and the treatments and medications they need.

Aside from institutional bias (i.e., racism, agism, and other stigmatizing attitudes toward specific barriers and  characteristics), emerging provider deserts where patients live without access to hospitals, primary care physicians, and pharmacies,[7] as well as the lack of affordable food, housing, and transportation, there is a direct correlation between health insurance coverage and health disparities in this country.[8] According to the Centers for Disease Control & Prevention (CDC), “Insurance coverage is strongly related to better health outcomes. Substantial disparities in uninsured rates were observed among all the demographic and socioeconomic groups.” In 2022, approximately 7.9 percent of the population was uninsured, down by 0.4 percentage points from 2021.[9] Health insurance coverage in and of itself, however, doesn’t necessarily result in equitable access to healthcare services or equitable health outcomes because often it is an insurance policy’s benefit and payment parameters that open the door to such disparities.

The so-called “cost containment tools” utilized by health insurance companies and pharmacy benefit managers (PBMs) are hurting patients.[10] Notably, they are driving and exacerbating health disparities. Some of the most common payor-driven barriers encountered by patients include prior authorization (PA), step therapy, copay accumulators, health insurance plan design, and an emerging one: prescription drug affordability boards (PDABs). This article highlights why these cost-containment strategies are problematic for patient access, affordability, and equity.

To read more about cost containment vs. care equality, click here.

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[1] National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Population Health and Public Health Practice; Committee on Community-Based Solutions to Promote Health Equity in the United States; Baciu A, Negussie Y, Geller A, et al., editors. Communities in Action: Pathways to Health Equity. Washington (DC): National Academies Press (US); 2017 Jan 11. 2, The State of Health Disparities in the United States. Available from: https://www.ncbi.nlm.nih.gov/books/NBK425844/

[2] AXA; Bogataj, Marie. 2019, Jun 16. Women vs. men: is there a health equality gap? Available from https://www.axa.com/en/news/women-vs-men-is-there-a-health-equality-gap

[3] U.S. Department of Health and Human Services; Office of Disease Prevention and Health Promotion; 2023, Sep 14. Social Determinants of Health and Older Adults. Available from https://health.gov/our-work/national-health-initiatives/healthy-aging/social-determinants-health-and-older-adults

[4] Lee Robertson, Ellesse-Roselee Akré, and Gilbert Gonzales.Mental Health Disparities at the Intersections of Gender Identity, Race, and Ethnicity.LGBT Health.Dec 2021.526-535. Available from: http://doi.org/10.1089/lgbt.2020.0429

[5] Hafeez H, Zeshan M, Tahir MA, Jahan N, Naveed S. Health Care Disparities Among Lesbian, Gay, Bisexual, and Transgender Youth: A Literature Review. Cureus. 2017 Apr 20;9(4):e1184. doi: 10.7759/cureus.1184. PMID: 28638747; PMCID: PMC5478215. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5478215/

[6] Institute of Medicine (US) Roundtable on Health Disparities. Challenges and Successes in Reducing Health Disparities: Workshop Summary. Washington (DC): National Academies Press (US); 2008. 2, The Impact of Geography on Health Disparities in the United States: Different Perspectives. Available from: https://www.ncbi.nlm.nih.gov/books/NBK215365/

[7] Horowitz, Brian T; 2022, Jun 2. What Are Medical Deserts, and How Can Technology Alleviate Them? HealthTech. Available from: https://healthtechmagazine.net/article/2022/06/what-are-medical-deserts-perfcon#:~:text=Areas%20without%20access%20to%20hospitals%2C%20primary%20care%20physicians%2C,research%20at%20GoodRx%2C%20a%20consumer-focused%20digital%20healthcare%20platform.

[8] U.S. Department of Health & Human Services; Centers for Disease Control & Prevention; Morbidity and Mortality Weekly Report; 2011, Jan 25. Fact Sheet: Health Disparities in Health Insurance Coverage. Available from https://www.cdc.gov/minorityhealth/chdir/2011/factsheets/insurance.pdf#:~:text=Insurance%20coverage%20is%20strongly%20related%20to%20better%20health,with%20a%20higher%20percentage%20of%20males%20being%20uninsured

[9] United States Census Bureau; 2023, Sep 12. Health Insurance Coverage in the United States: 2022. Available from: https://www.census.gov/content/dam/Census/newsroom/press-kits/2023/iphi/20230912-iphi-slides-health-insurance.pdf#:~:text=The%20uninsured%20rate%20decreased%20by%200.4%20percentage%20points,In%202022%2C%20the%20uninsured%20rate%20was%207.9%20percent

[10] American Medical Association; 2023, May 12. How prior authorization disrupts patient care, Part I. Available from: https://www.ama-assn.org/practice-management/prior-authorization/how-prior-authorization-disrupts-patient-care-part-i#:~:text=Our%20physicians%20are%20saying%20that%20prior%20authorization%20care,that%20prior%20authorization%20leads%20to%20negative%20clinical%20outcomes

Breakthroughs in HIV Research from CROI 2024

This month, the global health community convened at the Conference on Retroviruses and Opportunistic Infections (CROI) in Denver, spotlighting groundbreaking advancements in HIV research and treatment. This year's conference highlighted significant progress in long-acting HIV therapies and innovative strategies for pediatric HIV care, pointing towards a future where HIV management is more effective and less burdensome.

Key discussions focused on the success of long-acting treatments like Cabenuva (cabotegravir and rilpivirine), which have demonstrated remarkable efficacy in clinical trials, offering new hope for those challenged by daily medication regimens. These developments promise to enhance adherence and improve the quality of life for millions living with HIV.

Advancements in HIV prevention were also notable, with the introduction of once-weekly oral treatments and the confirmation of safety for HIV prevention methods during pregnancy. These innovations expand the tools available to combat HIV transmission and emphasize the need for accessible and inclusive prevention strategies.

Additionally, the conference highlighted the importance of addressing co-occurring conditions such as liver disease and cardiovascular risks in people living with HIV. The exploration of pediatric HIV treatment also showed promising paths towards ART-free remission in children, potentially leading to a cure for young patients.

The role of community-engaged research was underscored, ensuring that the developments reflect the needs and voices of those most affected by HIV. The insights from CROI 2024 mark a path forward in the HIV fight, characterized by innovation, collaboration, and a commitment to enhancing the lives of those impacted by the virus.

Advancements in Long-Acting HIV Treatments

The landscape of HIV treatment and prevention is undergoing a significant transformation, heralded by the advent of long-acting therapies. These innovations promise a new era of convenience and efficacy, potentially changing the lives of millions of people living with HIV (PLWH) worldwide.

At the forefront of this shift are long-acting injectable treatments, such as Cabenuva (cabotegravir and rilpivirine), which have demonstrated remarkable success in clinical trials. A new study reveals that "These findings open up new possibilities for millions of people with HIV, particularly those whose health suffers due to challenges of daily pill taking." This statement underscores the potential of long-acting injectables to revolutionize HIV treatment by alleviating the daily burden of pill-taking, with more than 90% of participants receiving their injections on time.

The development of ultra-long-acting formulations, such as the cabotegravir injection for HIV prevention, represents another leap forward. With a predicted half-life significantly longer than existing formulations, these treatments offer the promise of even greater adherence and convenience, potentially reducing the frequency of dosing to just 3 times a year.

Moreover, the integration of broadly neutralizing antibodies (bnAbs) with long-acting antiretrovirals is opening new avenues for more durable treatment options. As Liz Highleyman summarizes, "Broadly neutralizing antibodies appear to work well with lenacapavir or cabotegravir in long-acting regimens for HIV treatment, but studies are still in early stages." This collaboration between bnAbs and long-acting antiretrovirals has shown promising results, with studies reporting up to 95% of participants maintaining viral suppression.

Apart from injectable treatment options, the introduction of a once-weekly oral HIV treatment presents another long-acting option for patients who prefer treatment without needles. The convenience of a once-weekly regimen cannot be overstated, with one researcher emphasizing the importance of such developments: "Developing once-weekly treatment options could help meet the needs of each person, aiming toward maximizing long-term outcomes for people with HIV." This approach has demonstrated remarkable efficacy, with over 90% of participants maintaining viral suppression, showcasing the potential of once-weekly treatments to significantly enhance adherence and, consequently, the effectiveness of HIV treatment.

Breakthroughs in HIV Prevention

In addition to advancements in treatment regimens, significant progress has been made in ensuring the safety of HIV prevention methods during pregnancy. The use of the vaginal ring and oral PrEP has been thoroughly evaluated, with findings affirming their safety for pregnant women—a critical consideration given the increased vulnerability to HIV infection during pregnancy. Remarkably, "95% of deliveries were at term and 4% were preterm, with no study participants acquiring HIV," highlighting the effectiveness and safety of these prevention tools in protecting both mothers and their unborn children from HIV.

Furthermore, the Together Take Me Home project has made significant strides in expanding access to HIV prevention through the distribution of HIV self-test kits. In just nine months, the project saw over 181,558 orders placed, with 337,812 tests distributed, many to people who had never tested for HIV or had not tested in over a year. Sixty percent of all orders contained enough information to describe participants, with 61% from men reporting male partners in the past 12 months, 10.7% from gender-diverse persons, and 10% from Black women. This initiative underscores the importance of meeting people where they are, providing accessible and confidential testing options. As Dr. Neblett Fanfair noted, "This shows how impactful this is to meet people where they are with what they need to be met with. We’re really excited that it’s not just about HIV self-tests, but it also opens the door to STI testing and PrEP as well," highlighting the project's role in broadening the reach of HIV prevention efforts.

Addressing Co-Occurring Conditions

The intersection of HIV with other health conditions underscores the complexity of care required for people living with HIV. Recent research has brought to light significant advancements in addressing co-occurring conditions, such as liver disease and cardiovascular risks.

A groundbreaking study on the use of semaglutide has shown promising results in reducing the severity of metabolic dysfunction-associated steatotic liver disease (MASLD) in people living with HIV. MASLD, characterized by excessive fat accumulation in the liver, poses a significant risk of progressing to more severe liver diseases. The introduction of semaglutide, a medication initially used for diabetes and weight management, into the treatment regimen for PLWH has marked a notable advancement, with participants experiencing "an average 31% reduction in liver fat." This significant decrease highlights semaglutide's potential as a therapeutic agent in managing liver health in people living with HIV.

Furthermore, the issue of cardiovascular health in PLWH has been brought to the forefront by recent findings indicating that current tools may significantly underestimate the risk of cardiovascular events in this population. Notably, "Cardiovascular event rates were higher overall, with cisgender women experiencing about two and a half times more events than predicted." This discrepancy underscores the need for more accurate assessment tools and tailored prevention strategies to mitigate the elevated risk of cardiovascular diseases among people living with HIV.

Additionally, research into prostate cancer screening among men with HIV has revealed a concerning "screening gap." According to a study, men with HIV were significantly less likely to receive PSA screening prior to diagnosis, leading to a higher incidence of advanced prostate cancer at the time of diagnosis. This gap in screening and early detection highlights the need for increased awareness and proactive screening measures for men living with HIV, to ensure timely diagnosis and treatment of prostate cancer.

Innovations in Pediatric HIV Treatment

Pediatric HIV treatment is witnessing remarkable innovations, particularly in the areas of early treatment and the exploration of long-acting therapies. These advancements are not only enhancing the quality of life for children living with HIV but also paving the way toward potential remission and a future where daily medication may not be necessary.

In a new study highlighted in POZ and further discussed on HIV.gov has brought to light the significant potential of initiating ART within the first days of life. This approach has led to ART-free remission in some cases, with "four of the six children achieving ART-free remission." Such findings are groundbreaking, as they suggest that early intervention can drastically alter the course of HIV in children, offering a glimpse into the possibility of a cure or long-term remission. The impact of these results cannot be overstated, as they represent a monumental step forward in the quest to end HIV as a lifelong condition.

Further extending the scope of pediatric HIV treatment, recent research has also explored the benefits of long-acting HIV treatments for adolescents. Long-acting, injectable antiretroviral therapy has been found safe and effective in adolescents with HIV viral suppression. This study marks the first instance where adolescents with HIV have an alternative to daily pills for treatment, showcasing very encouraging outcomes. All participants in the study remained virally suppressed, and none experienced serious adverse events related to the drug regimen. This advancement is particularly significant as it addresses one of the major challenges in adolescent HIV care—adherence to daily medication. By providing a less frequent dosing schedule, long-acting treatments can significantly ease the treatment burden on young patients and their families.

Community-Engaged Research and Future Directions

These groundbreaking advancements in HIV research and treatment are increasingly being achieved thanks to community-engaged research. This approach not only enriches the research process but ensures that the outcomes are more aligned with the needs and realities of those most affected by HIV. Dr. LaRon Nelson's insights underscore the critical role of community involvement: "If we don’t have community voices or engaged communities, we aren’t going to be asking the right questions." This perspective highlights the indispensable value of incorporating diverse community experiences and insights into the research process, ensuring that the studies conducted are both relevant and impactful.

A prime example of the success of community-engaged research is the implementation and study of Doxy-PEP (doxycycline post-exposure prophylaxis) for the prevention of sexually transmitted infections (STIs) alongside HIV. Research and real-world application in San Francisco have demonstrated remarkable outcomes, with bacterial STIs decreasing by nearly 60% in less than a year at the San Francisco AIDS Foundation’s (SFAF) clinic. This significant reduction showcases the potential of community-engaged approaches in addressing public health challenges effectively. The collaboration between researchers, healthcare providers, and community members facilitated the rollout of Doxy-PEP, leading to substantial public health benefits.

Furthermore, the ongoing exploration of HIV vaccine research represents another frontier where community engagement is vital. As discussed in HIV.gov’s updates from CROI 2024, the development and testing of HIV vaccines are critical to the future of HIV prevention. Engaging communities in this research not only helps in designing more effective studies but also in building trust and ensuring broader acceptance and uptake of future vaccines.

Conclusion

CROI 2024 showcased significant progress in HIV research, highlighting innovations in long-acting treatments, prevention strategies, and care for co-occurring conditions and pediatric HIV. These advancements signal a shift towards more effective, less burdensome HIV management, tailored to meet diverse needs. They not only aim to improve the lives of millions living with HIV but also to significantly reduce new infections.

These developments are the culmination of years of research, collaboration, and community engagement, emphasizing the crucial role of community-involved research in addressing the real needs and voices of those affected by HIV.

To fully leverage these breakthroughs, continued research investment and stronger community partnerships are vital. We're at the cusp of a new era in HIV care, characterized by innovative treatments and comprehensive prevention efforts, all geared towards improving the lives of those living with or at risk for HIV. While these innovations are welcomed, necessary, and exciting, we must also recognize the policy landscape that affects access to care. In order to End the Epidemic, we must ensure consistent, open, equal access to individualized care and medications.

Integrating HIV Treatment with Gender-Affirming Care

In our pursuit of health equity, it's critical to focus on the specific needs of transgender people living with HIV, particularly regarding the safe and effective use of antiretroviral therapy (ART) alongside gender-affirming hormone therapy (GAHT). A groundbreaking study conducted by Thomas Jefferson University and the National Institutes of Health (NIH) has significantly advanced our understanding of ART with GAHT for transgender people, specifically women, living with HIV. This research, a direct response to the previously identified gaps in knowledge, offers concrete evidence on the safety of such co-administration, marking a shift in how healthcare providers can approach treatment plans for their transgender patients.

Until now, the apprehension to combine ART and GAHT has led a significant portion of the community to modify their treatment regimens due to fears of adverse interactions. A 2017 study in LGBT Health reveals the depth of this issue, noting that among study participants 40% reported not taking ART (12%), GAHT (12%), or both (16%) as directed due to drug-drug interaction (DDI) concerns. The recent study, published in Clinical and Translational Science, directly addresses these concerns by analyzing the pharmacokinetic interactions of doravirine, tenofovir (key components of ART), and estradiol (a common estrogen used in GAHT). The findings reveal that these medications, when used together, do not significantly impact each other's effectiveness, providing a much-needed evidence base to support the concurrent use of ART and GAHT.

For transgender women living with HIV, the integration of ART and GAHT is essential not only for managing their HIV status but also for affirming their gender identity. This aspect of their healthcare journey underscores the need for clear, evidence-based guidelines that address the co-administration of these treatments without compromising their efficacy or safety. The recent study's findings mark a significant advancement in our understanding, challenging previous assumptions about potential DDIs.

Safety of Co-administration

The study, "Bidirectional pharmacokinetics of doravirine, tenofovir, and feminizing hormones in transgender women (IDentify): A randomized crossover trial," examines the pharmacokinetic parameters—essentially, how the body absorbs, distributes, metabolizes, and excretes a drug—of doravirine and tenofovir (two key antiretroviral medications) when administered alongside estradiol, a common estrogen used in GAHT.

The findings are significant: the co-administration of these ART medications with estradiol does not significantly alter the effectiveness of each drug. Specifically, the study observed that the levels of doravirine, tenofovir, and estradiol remained stable when used together, indicating that these medications can be safely combined without diminishing their ability to treat HIV or support gender transition.

This research addresses a critical gap in healthcare for transgender women living with HIV, who have historically faced uncertainty about combining ART with GAHT. By demonstrating that these medications do not interfere with one another to a clinically significant degree, the study reassures patients and healthcare providers alike that pursuing both HIV treatment and gender affirmation simultaneously is both safe and viable.

Furthermore, this study lays the groundwork for more informed healthcare practices. It underscores the importance of considering the unique needs of transgender people in HIV treatment plans and encourages ongoing research to explore the interactions between various ART and GAHT regimens. Ultimately, this evidence supports the development of comprehensive care models that fully address the health and well-being of transgender women living with HIV, ensuring they receive effective, affirming care without compromise.

Advancing Guidelines and Communication for Integrated Care

For providers, this new data addresses the concerns expressed in a prior literature review in the Journal of the International AIDS Society, which noted the "insufficient data to address DDIs between ART and feminizing hormone regimens." Now, with fresh insights available, the emphasis can shift to using this updated information to craft and apply comprehensive guidelines and to kickstart education campaigns for providers and the community that align with these new findings.

The urgency now is to convert this research into practical, accessible guidelines that assist healthcare providers and transgender women in navigating the safe use of ART alongside GAHT. It's critical to update healthcare providers with the latest evidence, ensuring they are well-equipped to guide their patients through informed treatment choices. This means integrating new research findings into professional development programs and encouraging open, knowledgeable conversations between healthcare professionals and their patients about the combined use of these treatments.

Expanding the Scope: Inclusive Research for Transgender Men and Non-Binary People

While significant strides have been made in understanding the co-administration of antiretroviral therapy (ART) and gender-affirming hormone therapy (GAHT) for transgender women, our knowledge remains limited when it comes to transgender men and non-binary people living with HIV and seeking gender affirming care. With the completion of this major study by Thomas Jefferson University and the NIH, the next step is to expand our research efforts to encompass the full spectrum of transgender experiences, ensuring that future studies are as inclusive and comprehensive as possible.

Transgender men and non-binary people face unique healthcare challenges that are often overlooked in medical research. This oversight not only perpetuates health disparities but also leaves significant gaps in our understanding of how ART interacts with testosterone and other aspects of gender-affirming care utilized by transgender men and non-binary people. To ensure that all members of the transgender community receive comprehensive and affirming care, it is imperative that future studies specifically investigate these interactions.

The call for research extends beyond the pharmacokinetic interactions to encompass the physiological, psychological, and social outcomes of combining HIV treatment with gender-affirming care across all gender identities. Such studies should aim to provide a holistic understanding of treatment efficacy, safety, and the overall well-being of gender diverse patients, regardless of their specific gender identity or the nature of their gender-affirming treatments.

By advocating for and conducting research that includes transgender men and non-binary people, we can move towards a healthcare model that truly embraces diversity and inclusivity. This approach not only enriches our collective knowledge but also ensures that healthcare practices and guidelines are reflective of the needs of the entire transgender community. It is through this comprehensive understanding that we can improve care, enhance treatment adherence, and ultimately support the health and well-being of all transgender people living with HIV.

Mobilizing for Inclusive Healthcare Reform

The recent advancements in understanding the co-administration of antiretroviral therapy (ART) and gender-affirming hormone therapy (GAHT) represent a significant step forward. However, the journey towards fully supporting the health and well-being of all transgender people living with HIV continues. We must intensify our efforts in advocacy, education, and policy reform to ensure equitable treatment for everyone. Here's how different stakeholders can contribute:

For Healthcare Providers:

• Educate Yourself: Actively seek out and participate in continuing medical education (CME) opportunities focused on the latest research in ART and GAHT co-administration. Utilize resources from reputable organizations such as the World Professional Association for Transgender Health (WPATH) and the Centers for Disease Control and Prevention (CDC).

• Practice Inclusive Care: Implement guidelines and practices in your clinical setting that respect and address the unique needs of transgender patients. Ensure that your staff is trained in cultural competency regarding transgender health issues.

For Researchers:

• Fill the Research Gaps: Prioritize studies that explore the long-term health implications of ART and GAHT co-administration, especially for underrepresented groups within the transgender community, such as transgender men and non-binary people.

• Collaborate with the Community: Engage with transgender communities to ensure that research is inclusive, relevant, and respectful. Consider community-based participatory research (CBPR) approaches to involve community members in the research process.

For Policymakers:

• Develop Evidence-Based Guidelines: Work with medical experts and advocates to create and enforce guidelines that facilitate the safe co-administration of HIV medications and gender-affirming therapies. These guidelines should be based on the latest research and best practices.

• Support Access to Care: Advocate for policies that remove barriers to accessing both HIV treatment and gender-affirming care. This includes ensuring coverage by insurance providers and addressing legal and systemic obstacles that transgender people face.

For Advocates and Community Leaders:

• Raise Awareness: Use your platforms to disseminate accurate information about the safety and importance of integrating ART with GAHT. Highlight stories and data that underscore the positive impact of affirming care.

• Mobilize Support: Organize campaigns to advocate for improved healthcare policies, increased research funding, and greater awareness of transgender health needs. Collaborate with healthcare providers, researchers, and policymakers to amplify your efforts.

Together, we can bridge the gaps in care and knowledge, creating a future where every transgender person living with HIV has access to the treatments they need, free from stigma and barriers. Let's commit to a healthcare environment that celebrates diversity, champions inclusivity, and ensures comprehensive care for all.

Dire Consequences of the Change Healthcare Cyberattack

On February 21, 2024, the healthcare sector faced a seismic disruption when Change Healthcare, a cornerstone in the healthcare data exchange ecosystem, fell victim to a sophisticated cyberattack. Orchestrated by the notorious ransomware group known as ALPHV/Blackcat, this attack not only compromised the integrity of Change Healthcare's systems but also sent shockwaves across the entire healthcare landscape, affecting providers, insurers, and patients alike. Change Healthcare, now part of Optum under the umbrella of UnitedHealth Group thanks to a controversial $13 billon dollar acquisition, plays a central role in processing medical claims, verifying insurance eligibility, and facilitating electronic prescriptions for as many as half of all claims processed in the U.S. The immediate fallout from this cyberattack has spotlighted the fragility of our interconnected healthcare infrastructure and raised urgent questions about cybersecurity, patient care continuity, and the broader implications of healthcare consolidation.

As of March 6, 2024, the situation surrounding the Change Healthcare cyberattack remains critical. UnitedHealth Group has made strides in implementing workarounds and temporary solutions to restore some level of functionality to pharmacy, claims, and payment systems. While progress in providing temporary solutions is a positive development, the absence of a definitive timetable for fully restoring all affected services continues to pose significant challenges for providers, independent pharmacies, and patients alike. The financial strain on these entities persists, compounded by UnitedHealth Group's continued collection of patient premiums amidst the outage. With UnitedHealth Group's net worth standing at $433,790,000,000, the contrast between the corporation's financial standing and the ongoing struggles within the healthcare sector is stark, underscoring the urgent need for a comprehensive resolution to this unprecedented crisis.

Direct Impact on Patient Access and Care

The cyberattack on Change Healthcare has not only disrupted the healthcare data exchange ecosystem but has also led to significant patient distress and financial uncertainty. This crisis has been further compounded by the emergence of potential litigation from patients left to grapple with whether insurance will cover their treatments or medications. Patients, regardless of their plan type, are finding themselves at a heightened risk of incurring unexpected bills, exacerbating the already dire situation.

Take, for instance, the experience of Mara Furlich. Battling escalating Covid-19 symptoms and unable to get her claim processed due to the cyberattack, Furlich was forced to pay $1,600 out of pocket for Paxlovid. Similarly, one of the Community Access National Network’s (CANN) very own board members was confronted with a balance bill of over $2,000 from CVS Specialty Pharmacy for HIV medication when their Patient Assistance Program benefits were unable to be processed, illustrating the financial and access barriers erected by the cyberattack. This scenario, emblematic of the difficulties in processing Patient Assistance Programs (PAPs), underscores the significant disruptions to medication access, especially critical for managing chronic conditions.

Jen Laws, President & CEO of CANN, articulates the broader ramifications for people living with HIV (PLWH). "We've been in contact with our partners, including funders, to raise the concern around maintaining continuous access to care for PLWH, regardless of their payor," Jen states. "The reality is patients need to be aware their pharmacies, providers, and labs may be struggling to communicate and deliver timely service because of the sheer breadth of Change's reach."

This incident, alongside the litigation threats reported by Axios, underscores the acute disruptions to medication access and the financial jeopardy faced by patients. Kathy Oubre, CEO of Pontchartrain Cancer Center in Louisiana, shares similar concerns, noting the center has had to dispense drugs at risk due to the benefits verification process being down, leaving providers and patients "flying blind."

These developments signal a critical juncture in the healthcare sector's response to the cyberattack, highlighting the urgent need for systemic solutions to restore patient access to care and address the financial uncertainties exacerbated by this crisis.

The Role and Response of UnitedHealth Group

UnitedHealth Group found itself at the heart of this crisis. The conglomerate's response has been a blend of damage control and strategic measures aimed at mitigating the fallout. UnitedHealth Group's acknowledgment of the cyberattack was swift, with public assurances of their commitment to rectify the situation and restore full services. Part of their response has been the launch of a temporary financial assistance program, as outlined on UnitedHealth Group's website. This program, offering interest-free loans to affected healthcare providers, has been promoted as a means to ease the financial burden wrought by the cyberattack, facilitating the recovery of disrupted cash flows and delayed payments.

Yet, this initiative has not been universally welcomed. Criticism from the American Hospital Association (AHA) and other healthcare stakeholders has been vocal, with many decrying the financial assistance terms as burdensome, highlighting the disconnect between UnitedHealth's proposed solutions and the actual needs of the healthcare providers struggling in the cyberattack's aftermath.

The plight of Dr. Christine Meyer's primary care practice in Exton, PA, as reported by The New York Times, exemplifies the dire straits many healthcare providers find themselves in due to the cyberattack on Change Healthcare. Dr. Meyer's account of resorting to mailing "hundreds and hundreds" of pages of Medicare claims highlights the drastic measures providers are forced to take to navigate the bureaucratic maze in the absence of functional digital systems. The stark reality of having to consider cuts to essential services, like vaccine supplies, to conserve cash underscores the severity of the situation. Through Optum’s temporary funding assistance program, Dr. Meyer said she received a loan of $4,000, compared with the roughly half-million dollars she typically submits through Change. “That is less than 1 percent of my monthly claims and, adding insult to injury, the notice came with this big red font that said, you have to pay all of this back when this is resolved,” Dr. Meyer said. “It is all a joke.”

Moreover, UnitedHealth Group's continued collection of patient premiums amidst this turmoil has sparked further controversy, raising ethical questions about corporate responsibility versus profitability during a healthcare crisis. UnitedHealth Group's role in this crisis and its response to the cyberattack highlight the complex interplay between healthcare infrastructure, corporate governance, and patient care. As the healthcare sector navigates the aftermath of the cyberattack, the actions taken by UnitedHealth Group will likely continue to be a focal point for analysis and discussion, underscoring the need for robust, patient-centered solutions in the face of unprecedented challenges.

ADAPs and PAPs: Navigating the Cyberattack Crisis

The cyberattack has exposed the vulnerabilities of essential healthcare support systems, notably AIDS Drug Assistance Programs (ADAPs) and Patient Assistance Programs (PAPs). These programs, a critical safety net for providing vulnerable populations with access to necessary medications, have faced significant challenges in maintaining their operations amidst the cyberattack's disruptions.

In response, NASTAD issued guidance to ADAP administrators in an email, indicating that, due to delays in prescription fills caused by the outage, programs might need to temporarily cover medication costs directly, later seeking reimbursement from pharmacies. This measure, while ensuring that ADAP remains the 'payer of last resort,' highlights the operational and financial complexities these programs are navigating to keep access to care uninterrupted.

The repercussions of the cyberattack go beyond operational disruptions, threatening the very fabric of the healthcare safety net. The interim 'full pay' solution underscores the delicate balance between ensuring immediate access to medications and the long-term sustainability of these programs.

Amidst this crisis, the collective action of healthcare stakeholders is imperative. The NASTAD memo not only outlines immediate actions for ADAP administrators but also calls for widespread support to uphold these critical programs, encouraging ready communication to case managers and patients regarding the situation, status updates, and navigating alternative access to care as needed. As the sector continues to address the fallout from the cyberattack, the adaptability and resilience of ADAPs and PAPs are paramount in ensuring continuous care for those who depend on them most.

Reassessing Healthcare's "Too Big to Fail" Doctrine

This unprecedented disruption of critical services has exposed serious vulnerabilities associated with the healthcare sector's consolidation, particularly following UnitedHealth Group's acquisition of Change Healthcare. This event has reignited the debate over the "too big to fail" concept within healthcare, a concern that the Federal Trade Commission (FTC) had previously filed suit over due to potential risks of market dominance and a centralized point of failure.

The FTC's apprehensions about the merger highlighted fears of creating an overly centralized healthcare data exchange ecosystem, susceptible to significant disruptions from single points of failure. These theoretical concerns have been realized in the wake of the cyberattack, illustrating the tangible systemic risks of such consolidation. The incident underscores the precarious balance between efficiency gains through consolidation and the increased risk of widespread service disruptions. It should also seriously call into question prioritizing corporate profits and shareholder value over patient care and access.

The U.S. Department of Justice's recent launch of an antitrust investigation into UnitedHealth Group, as reported by The Wall Street Journal, adds a new layer to the ongoing debate. This investigation, focusing on UnitedHealth's expansive reach across the healthcare sector and its potential effects on competition and consumer choice, signals a critical moment in the U.S. government's efforts to address monopolistic consolidation practices within the healthcare industry.

Furthermore, the disproportionate impact on smaller entities, such as independent pharmacies and patient assistance programs, underlines the broader implications of healthcare consolidation. These challenges highlight the need for a healthcare infrastructure that values diversity and decentralization, fostering resilience against such cyber threats.

In light of the antitrust investigation and the fallout from the cyberattack, there's a pressing need for a comprehensive reassessment of healthcare consolidation trends. Strategic regulatory oversight, significant investments in cybersecurity, and comprehensive contingency planning are essential to mitigate the "too big to fail" risks. The healthcare system's integrity, resilience, and commitment to patient care in an increasingly digital age demand a vigilant approach to ensuring that consolidation does not compromise the sector's ability to serve the public effectively.

Call for Policy Intervention and Sector-wide Reforms

The cyberattack on Change Healthcare has catalyzed a unified call for urgent policy interventions and comprehensive sector-wide reforms from leading healthcare organizations, including the American Hospital Association (AHA) and the Medical Group Management Association (MGMA). These calls to action emphasize the critical need to fortify cybersecurity defenses, guarantee equitable patient access to care, and critically evaluate the prevailing trends of healthcare consolidation that have left the sector vulnerable.

The AHA has been at the forefront, advocating for robust support to help healthcare providers weather the storm caused by the cyberattack. Their public statement underscores the profound operational and financial challenges healthcare providers are facing, urging for greater flexibility from payers and governmental intervention to alleviate the crisis's immediate impacts.

Echoing this sentiment, the MGMA has highlighted the dire circumstances medical groups are navigating, as detailed in their communication to HHS Secretary Xavier Becerra. The association's plea for comprehensive support from the Department of Health and Human Services (HHS) reflects the broader necessity for guidance, financial aid, and regulatory leniency to ensure the sustainability of medical practices during these turbulent times.

Both organizations also spotlight the broader issue of healthcare consolidation, critiquing the increased centralization of healthcare services as a significant factor exacerbating the cyberattack's impact. This consolidation not only poses heightened cybersecurity risks but also threatens the diversity and resilience of the healthcare ecosystem. In response, there's a pressing demand for policy reforms that address both the immediate cybersecurity vulnerabilities and the long-term implications of healthcare consolidation, aiming to cultivate a more robust, diverse, and equitable healthcare system.

Urgent Calls to Action:

1. UnitedHealth Group must significantly expand its financial assistance program to offer real relief to the affected healthcare providers, pharmacies, and patients, ensuring the aid is substantial and derived from its vast resources, not at the expense of American taxpayers.

2. Regulatory bodies, including the FTC, must critically assess healthcare consolidation's impact, implementing measures to mitigate the risks of such centralization and prevent future vulnerabilities.

3. A united front of healthcare providers, associations, and advocacy groups is essential to demand accountability and transparency from UnitedHealth Group and similar entities, ensuring commitments to cybersecurity and continuity of care are upheld.

4. Legislators and policymakers are called upon to enact stringent cybersecurity regulations for the healthcare sector, emphasizing the need for comprehensive security protocols, consistent audits, and effective contingency planning.

5. A broader dialogue on healthcare consolidation's future is necessary, advocating for a healthcare model that prioritizes patient welfare, system resilience, and equitable access above corporate profitability.

In the wake of the Change Healthcare cyberattack, the path forward requires not just immediate remedial actions but also a deep, systemic reevaluation of the healthcare sector's structure and policies. It's time for decisive action and meaningful reform to ensure a secure, resilient healthcare system that serves the needs of all patients, safeguarding against future crises and fostering a healthcare environment where patient care is paramount.

Are Cancer Risks Higher for People Living with HIV/AIDS

For many years, scientists have been exploring the relationship between HIV/AIDS and various cancers. This complex connection stems from how the virus weakens the immune system, leaving folks more vulnerable. While there has been evidence of higher prevalence of certain cancers amongst people living with HIV/AIDS (PLWHA), the actual mechanisms have thus far remained unclear.

Recently, a team from Hospital 12 de Octubre (H12O) and the National Cancer Research Centre (CNIO) in Madrid, Spain found that Hepatitis B and C viral infections can cause multiple myeloma and its pathological precursors, monoclonal gammopathies. Additionally, they found that early detection of viral hepatitis and the use of antiretrovirals resulted in better health outcomes in general – taking care of the hepatitis and the monoclonal gammopathies/multiple myeloma at the same time.

This groundbreaking discovery comes shortly after the data was made available from the HIV/AIDS Cancer Match Study, which links United States’ HIV surveillance and cancer registry data from 2000 to 2019. Haas et al. examined this data and created a population-based linkage study which garnered the largest cohort to date for estimating anal cancer among PLWHA in the United States, with a cohort of 3,444 anal cancers diagnosed in patients with HIV. Of these 3,444 cases, 2,678 occurred in patients with a prior AIDS diagnosis.

Additionally, several cancers have been identified as AIDS-defining illnesses. The presence of these conditions indicates that the patient has reached the advanced stage of HIV infection known as AIDS. These include invasive cervical cancer, Kaposi’s sarcoma, and some iterations of lymphoma (e.g. diffuse large B-cell lymphoma and Burkitt or Burkitt-like lymphoma). A 2021 meta-analysis of twenty-four studies found that women with HIV are six times more likely to have cervical cancer than their counterparts without HIV. This is likely due to the inability to clear human papillomavirus (HPV) infection, which can cause cervical cell changes if left untreated in some cases. According to Lymphoma Action, diffuse large B-cell lymphoma is around fifteen times more common in PLWHA, while PLWHA are around 30 times more likely to develop Burkitt lymphoma.

As is often the case when living with HIV/AIDS and co-occurring conditions, early detection, open and frequent communication with healthcare providers, and HIV/AIDS treatment regimen adherence can make a significant difference in the duration and intensity of these conditions, so patients should be encouraged to be vigilant self-advocates when it comes to their health and wellness, and, when needed, identify resources among caregivers and community who might be able to assist in care advocacy.

Eddie Hamilton (left), Bill Arnold (right)

CANN would like to recognize the fierce advocacy of our colleague, friend, and former board member, Edward “Eddie” Hamilton (pictured). Eddie served on CANN’s Board of Directors from 2014 to 2022 and was the Founder and Executive Director of the ADAP Educational Initiative, which assisted clients enrolled under the AIDS Drug Assistance Program (ADAP). In 2012, Eddie was honored as the ADAP Champion of the Year by ADAP Advocacy for fighting the Ohio Department of Health’s attempts to implement medical eligibility criteria to qualify for ADAP services. Eddie passed away on July 12, 2022, having had cancer twice. CANN continues to honor Eddie’s legacy as well as that of the late Bill Arnold (pictured right), who served as CANN’s founding President & CEO, by championing patient-centric action toward health equity and access.

Transgender Community's Fight Against Systemic Discrimination

Transgender people grapple with profound healthcare barriers, intensified by systemic discrimination including a recent surge in legislative actions aimed at curtailing their rights. The National Center for Transgender Equality's (NCTE) 2022 U.S. Trans Survey (USTS) - the largest of its kind - highlights these impediments, demonstrating how discrimination not only obstructs access to general healthcare but also critically undermines HIV prevention and treatment efforts. This situation is compounded by healthcare providers' lack of familiarity with transgender health issues and the absence of supportive policies, exacerbating health disparities among transgender people. In the face of an unprecedented wave of anti-trans legislation in the last several years, the imperative for swift, decisive action to safeguard equitable healthcare access has never been more urgent.

Navigating the Healthcare Landscape for Transgender Communities

The 2022 USTS Early Insights Report underscores the significant healthcare barriers transgender folks face, characterized by systemic discrimination and economic challenges. This comprehensive survey, gathering insights from over 92,000 respondents, sheds light on the challenges confronting both binary and nonbinary transgender people.

Challenges in Healthcare Access and Provider Education

A notable 42% of USTS respondents have found themselves in the position of educating their healthcare providers about transgender care, underscoring a critical gap in medical education. This necessity not only burdens transgender people but also reflects wider issues of healthcare accessibility and inclusivity. Additionally, prohibitive costs deter 25% of the community from seeking necessary medical care, highlighting the financial barriers obstructing access to essential services.

The pervasive lack of provider education on transgender health issues is further critiqued in an American Medical Association’s Journal of Ethics article, emphasizing the negative impact of this educational deficiency on care quality and accessibility. Addressing this gap is essential for creating a healthcare environment that respects and adequately serves transgender people.

Socioeconomic Impact on Healthcare Access

Economic instability exacerbates healthcare disparities for transgender communities. The USTS reveals that 34% of respondents live in poverty, and 18% are unemployed, significantly diverging from national averages. This financial precarity, compounded by a 30% homelessness rate among respondents which is associated with experiences of housing and employment discrimination as well as experiences of domestic or intimate partner violence, severely limits healthcare access.

Insurance coverage disparities are stark, with 15% of transgender respondents uninsured, nearly triple the rate of the general U.S. population. Additionally, 29% experienced insurance lapses in the year before the survey, jeopardizing access to critical healthcare services, including HIV prevention and treatment.

A Center for American Progress report further highlights the economic barriers that disproportionately affect transgender people's healthcare access, emphasizing the need for policy interventions to mitigate these disparities.

The Toll of Harassment and Violence

Harassment and violence are prevalent issues within transgender communities, with 30% reporting verbal harassment and 39% facing online harassment due to their gender identity over the past year. This hostile environment not only impacts mental and physical health but also deters many from accessing healthcare services for fear of discrimination.

Centers for Disease Control and Prevention (CDC) research reveals that nearly 70% of transgender women experience discrimination, particularly in employment, directly affecting healthcare access and utilization. This discrimination creates significant barriers to health insurance, medical care due to cost, and access to transgender-specific and gender-affirming procedures.

The mental health crisis among transgender people, defined by discrimination, violence, and systemic barriers, is highlighted in a Washington Post feature on transgender healthcare. Nearly half of transgender adults report encountering healthcare providers lacking knowledge in transgender care, contributing to a crisis of depression, anxiety, and suicidal ideation. Addressing this crisis requires systemic changes in healthcare delivery and education to ensure comprehensive healthcare services are inclusive, accessible, and culturally competent.

Addressing Discrimination's Impact on HIV Risk in Transgender Communities

Discrimination against transgender people is a profound social injustice, critically escalating HIV risk. The CDC's report on the Prevalence of Discrimination reveals that nearly 70% of transgender women face discrimination that acutely affects employment, housing, and access to healthcare opportunities. These obstacles represent an incredible public health challenge, directly undermining efforts to combat HIV.

Discrimination leads to a marked hesitancy among transgender people to seek healthcare, including essential HIV testing and treatment. This hesitancy is intensified by a lack of culturally competent healthcare providers who understand the specific health needs of transgender people. The CDC highlights the critical role of HIV testing as the cornerstone of treatment and prevention, pointing out a significant diagnostic gap among transgender women living with HIV. This underscores the pressing need for healthcare environments that are both accessible and affirming.

Transgender women, especially those of color, face a myriad of societal challenges that increase their risk of HIV. The CDC's report on Syndemics outlines how factors like condomless anal intercourse, homelessness, incarceration, and substance use, compounded by discrimination, heighten this risk. A comprehensive approach that includes social support, housing stability, and anti-discrimination initiatives is essential to address these interconnected challenges. Despite the critical role of social support, the CDC also notes the limitations of support networks in mitigating the HIV risk associated with violence and harassment. This calls for a broader, systemic strategy to address the root causes of discrimination and violence against transgender people.

In addressing HIV risk, it's crucial to recognize the specific challenges faced by transgender men, highlighting the need for prevention strategies tailored to their experiences. Misunderstandings about the HIV risk for transgender men, particularly those engaging in sexual activities with cisgender men, overlook the reality that a segment of this community is involved in behaviors that increase their HIV and STI exposure. This issue is exacerbated by the insufficient HIV prevention resources tailored to transmen and their underrepresentation in health research. The dynamics of power within their sexual relationships can complicate safe sex practices. Factors like the heightened libido from testosterone therapy may lead to riskier sexual choices, further influenced by societal discrimination. Effective interventions must therefore embrace inclusive healthcare and societal support, promoting environments where transgender men can confidently express their sexuality while ensuring their health and well-being.

PrEP and Hormone Therapy: Navigating Concerns

Pre-exposure prophylaxis (PrEP) is a key strategy in preventing HIV among transgender people at risk. Despite its proven effectiveness, the adoption of PrEP by transgender women is disproportionately low, impeded by systemic obstacles and concerns about interactions with hormone therapy. The CDC has confirmed that there are no adverse interactions between PrEP medications and feminizing hormones, emphasizing the need to debunk myths and promote PrEP as a cornerstone of HIV prevention.

Echoing these concerns, a MedPage Today article delves into how homelessness, employment discrimination, and violence not only compound the HIV risk but also significantly obstruct access to crucial prevention tools like PrEP. Despite widespread awareness, the translation into action—PrEP uptake—remains alarmingly low among transgender women, spotlighting the chasm between knowledge and accessible, actionable health interventions, widened by entrenched systemic inequalities.

Navigating Legislative Barriers and Societal Challenges

The need for legislative action and provider education to improve healthcare accessibility are illustrated in the story of Robert Eads, a tragic example of the dire consequences of healthcare related discrimination. Eads, a transgender man from Georgia, encountered significant barriers to receiving treatment for ovarian cancer, with numerous doctors refusing care due to his gender identity and ultimately leading to his death. His experience underscores the critical need for healthcare systems that are accessible and inclusive, ensuring that transgender people receive the care they need without discrimination.

Unfortunately, the landscape of transgender rights and healthcare access in the United States is moving in the opposite direction thanks to a surge in anti-trans legislation, marking a concerning trend toward restricting the freedoms and healthcare access of transgender folks. A 2024 report from USA Today highlights this alarming escalation, noting that as of February 14th 130 bills targeting transgender rights had been filed nationwide. This legislative push not only seeks to limit access to gender-affirming care but also poses a broader threat to the visibility and rights of transgender people in public life.

The American College of Physicians (ACP) has voiced concern over the growing number of states implementing bans on gender-affirming healthcare. Following Arkansas's 2021 ban on such care for transgender minors, at least 12 other states have enacted similar restrictions, contributing to a hostile legislative environment that has put over 146,300 transgender youth and young adults at risk of being denied access to vital medical care known to mitigate risks of depression and suicide.

The burgeoning wave of anti-trans legislation casts a long shadow over the lives of transgender people, creating an atmosphere rife with fear and exclusion. The narrative shared by Ashley Andreou in Scientific American brings to light the chilling effect these laws have on both the mental and physical well-being of transgender people and the medical professionals dedicated to their care. Andreou's personal connection to the issue, through the loss of a family member to the mental trauma of transgender discrimination, underscores the profound human cost of these legislative actions. The laws, fueled by deliberate misinformation and detached from evidence-based medical practice, not only threaten the rights and dignity of transgender people but also jeopardize the very essence of patient-centered care.

Critically, the most recent wave of anti-trans legislation specifically targets access to care and even weaponizes accessing care for transgender patients, in and of itself. With some states adopting laws or administrative policies to pursue the medical records of transgender patients, even outside of those particular states, and the refusal of those medical institutions to protect patient privacy at the risk of facing state-sponsored legal challenges.

In the face of such legislative adversity, the call for advocacy and legal resistance becomes ever more critical. The experiences detailed by Andreou, from the criminalization of physicians providing gender-affirming care to the forced closure of clinics like Texas's GENECIS, highlight the urgent need for policies that protect the healthcare rights of transgender people. This legislative hostility not only undermines the autonomy of transgender people but also places an undue burden on healthcare providers, stifling their ability to offer essential care.

Empowering Transgender Health: Education, Advocacy, and Policy Reform

Equitable healthcare for transgender communities hinges on a unified strategy encompassing education, advocacy, and public policy. At the core of this strategy are the CDC's Transforming Health guidelines, which equip healthcare providers with a framework for delivering care that respects the unique needs of transgender people. These guidelines underscore the necessity of a well-informed healthcare team to create an environment that is affirming and respectful for all patients.

The Biden Administration's initiative to fund sex education for trans boys marks a critical step in addressing the educational gaps in sexual health for transgender and non-binary youth. This move fills a crucial need and sets a precedent for future policies aimed at improving health outcomes for transgender youth. It also specifically speaks to a significant gap in even existing outreach to transgender people. Transgender women are over-represented in many studies and programming due to the heightened violence this community faces. Transgender men on the other hand have often been left behind in programming and research - the Biden Administration’s move is unique in its effort to meet the needs of young transgender men.

However, the potential for a rollback of protections under administrations like the previous one's underscores the fragile nature of transgender rights. The ease with which previous gains can be reversed highlights the need for continuous advocacy and vigilance. Advocates must remain prepared to counter any attempts to diminish protections for transgender people, employing a combination of legal, policy, and grassroots strategies to safeguard the rights and health of transgender communities.

Amid systemic barriers and discrimination, advocacy is crucial in securing the rights of transgender people to access gender-affirming care and protection from healthcare discrimination. Key actions include:

• Strengthen Legal and Policy Advocacy: Monitoring policy changes affecting transgender rights, challenging discriminatory policies through legal avenues, and collaborating with policymakers to advocate for inclusive laws.

• Enhance Public Education and Awareness: Leveraging research and reports to educate the public, healthcare providers, and policymakers about the challenges faced by transgender people.

• Mobilize Community and Allies: Organizing community support and direct actions to advocate for inclusive policies at institutional and governmental levels.

• Invest in Research and Documentation: Continuing to document health disparities and experiences of discrimination to support advocacy and policy reform.

• Pursue Strategic Litigation: Using the courts to challenge discriminatory practices and secure legal protections for transgender people. This would be particularly notable if initiated or otherwise supported by executive agencies of the federal government.

Achieving healthcare equity for transgender communities demands:

• Comprehensive training on transgender health issues for healthcare providers to ensure empathetic, respectful care.

• Advocacy for inclusive policies that protect transgender people from discrimination in healthcare institutions.

• Support for gender-affirming care to be included in health insurance coverage and made accessible for all transgender people.

• Development and funding of mental health services tailored to the needs of transgender communities.

• Building supportive community environments that empower transgender people and provide essential resources for their well-being.

By adopting these strategies, we move closer to a future where healthcare equity for transgender people is a reality, reflecting a commitment to human rights and dignity. We can create a healthcare system that recognizes and meets the needs of every person, regardless of gender identity, and moves us closer to Ending the HIV Epidemic with comprehensive and collaborative efforts between allies.

Ripple Effect: How PBMs and Counterfeit Drugs Threaten Patients

The infiltration of counterfeit drugs into the legitimate pharmaceutical supply chain poses a significant risk to patient health and safety, particularly for those living with HIV. While counterfeit drugs are nothing new, the criminals threatening our safety have a surprising new ally: Pharmacy Benefit Managers (PBMs). A report by the Partnership for Safe Medicines unveils how criminal entities exploit vulnerabilities in the supply chain, made worse by PBMs, whose reimbursement policies often leave pharmacies on the edge of financial viability.

The fight against HIV/AIDS is significantly hindered by the infiltration of counterfeit medications into the pharmaceutical supply chain, an issue that transcends mere regulatory challenges or financial losses. It directly impacts the health and safety of people living with HIV (PLWH), undermining the global effort to manage and eventually End the HIV Epidemic.

A striking example of the severity of this issue is the investigation conducted by Gilead Sciences Inc., which was extensively covered by The Wall Street Journal. This investigation uncovered that over two years, a staggering 85,247 counterfeit bottles of Gilead's HIV medications Biktarvy and Descovy, valued at more than $250 million, had been distributed within pharmacies. These counterfeit products, the result of sophisticated criminal networks exploiting supply chain vulnerabilities, ranged from being filled with harmless over-the-counter painkillers to dangerous antipsychotic drugs, posing significant health risks to unsuspecting patients. “Harmless” is relatively qualified here because when PLWH are not receiving necessary antiretroviral medications, conditions can develop quickly with deadly consequences, medication resistance can bloom, and new transmissions can occur.

The presence of counterfeit medications not only endangers the lives of PLWH but also severely erodes trust within communities, particularly those that are already marginalized and financially strained. The breach in the supply chain security caused by these counterfeit drugs highlights a critical public health issue that demands immediate and concerted action from all sectors involved in healthcare delivery.

Addressing the Challenges Posed by Pharmacy Benefit Managers and Under-Reimbursement

PBMs are at the heart of growing scrutiny for practices exacerbating healthcare system challenges, notably impacting the economic viability of pharmacies, and facilitating the entry of counterfeit drugs into the supply chain.

Their primary role is to negotiate drug prices and manage prescription drug benefits on behalf of health insurers, under the guise of controlling costs and streamline the prescription process. The reality is, PBMs do not necessarily pass on “savings” to patients or plan sponsors and have, in truth, become a self-dealing entity working hard to maximize the profits of insurance company shareholders. PBMs often implement reimbursement policies that pay pharmacies less than the actual cost of acquiring and dispensing medications when those pharmacies are not owned by the PBM itself. This under-reimbursement pressures pharmacies, especially independent ones, to find ways to sustain their operations amidst shrinking margins. In other instances, PBMs offer higher reimbursement rates to their mail-order pharmacy and work hard to steer patients away from independent pharmacies.

This economic squeeze leads to a consequential gap in the market: the demand for medications that the legitimate supply chain cannot adequately supply at the prices set by PBMs. Counterfeiters exploit this gap, introducing fake or substandard medications into the supply chain and offering the fakes at a lower acquisition cost than legitimate wholesalers. The cycle perpetuated by PBM under-reimbursement practices not only undermines the financial stability of pharmacies but also compromises patient safety. Pharmacies, caught in the vise of financial pressures, may unknowingly procure medications from less reputable sources, inadvertently becoming conduits for counterfeit drugs. This situation is exacerbated in rural and underserved communities, where pharmacies are often the sole healthcare providers, making the impact of counterfeit medications even more devastating. These counterfeit drugs find their way into pharmacies struggling to balance financial viability with the provision of quality care. The allure of lower cost options in the face of under-reimbursement makes these counterfeit products dangerously appealing for pharmacists seeking to meet patient needs.

The financial strain on independent pharmacies due to PBM policies is further highlighted by the National Community Pharmacists Association's (NCPA) support for a class action lawsuit against Express Scripts. This legal action accuses Express Scripts and several smaller PBMs of colluding to manipulate reimbursement rates and impose higher fees on pharmacies, further squeezing their financial resources and compromising their ability to provide quality services.

American Pharmacy Cooperative, Inc. (APCI)'s initiative to engage Vanguard Inc., a significant investor in the conglomerates owning the "Big 3" PBMs, exemplifies the urgent need for systemic reform. This effort, celebrated by Pharmacists United for Truth & Transparency (PUTT), emphasizes the necessity of reforms that ensure transparency, fair reimbursement, and ethical conduct to safeguard the pharmaceutical supply chain.

Prescription Drug Affordability Boards (PDABs) and Their Impact

Prescription Drug Affordability Boards (PDABs) are quickly gaining popularity among states, being sold as an attempt to make healthcare more affordable. These boards, armed with the authority to scrutinize and cap drug prices, aim to shield the public from the soaring costs of essential medications. However, there's concern that these actions might limit access to medications for marginalized communities and create more challenges for pharmacies.

A recent webinar hosted by the National Minority Quality Forum (NMQF) brought to light the challenges PDABs face in balancing drug affordability with healthcare equity. Jen Laws, President and CEO of the Community Access National Network (CANN), voiced a critical perspective, highlighting the limitations of PDABs' current toolkit, which primarily revolves around setting upper payment limits. Laws pointed out, "The only tool that the PDABs have been provided is an upper payment limit, and they are not being encouraged to explore other tools or learn how to make investments into issues of health equity and access. When we take money out of systems, the people not represented lose out first." Few of these boards have patients appointed to them. This insight underscores the complexity of ensuring drug affordability does not come at the expense of access, particularly for those in marginalized communities.

Echoing this sentiment, Gretchen C. Wartman, Vice President for Policy and Program and Director of the Institute for Equity in Health Policy and Practice at NMQF, emphasized the need for PDABs to broaden their approach. "We must pursue efforts to ensure that PDABs are improving access to medicines, rather than constraining that access in the interest of financial risk mitigation," Wartman stated, advocating for a more holistic strategy that aligns drug affordability with comprehensive access to care.

The discussions surrounding PDABs, particularly highlighted in the NMQF webinar and our CANN blog, reveal a critical need for a nuanced approach to drug affordability that doesn't inadvertently compromise access or exacerbate vulnerabilities in the pharmaceutical supply chain. By focusing narrowly on upper payment limits (UPLs) as a primary tool for cost containment, there's a real risk of creating gaps in the medication supply that counterfeiters could exploit, further endangering patient safety and public health. This scenario underscores the importance of developing comprehensive strategies that not only address the immediate issue of drug costs but also consider the broader implications for healthcare equity, pharmacy viability, and the integrity of the medication supply chain. Policymakers and stakeholders must work collaboratively to ensure that efforts to control drug prices do not inadvertently introduce new risks, particularly for marginalized communities and the pharmacies that serve them.

A Legislative Response: The Florida Prescription Drug Reform Act

The Florida Prescription Drug Reform Act stands as a major legislative response to the pressing issues within the pharmaceutical supply chain, particularly addressing the detrimental practices of Pharmacy Benefit Managers (PBMs) that contribute to pharmacy under-reimbursement and indirectly foster an environment ripe for counterfeit drugs.

Focused Provisions:

• Regulating PBM Operations: The Act mandates PBMs to obtain a certificate of authority, introducing a layer of accountability and transparency previously absent. This requirement aims to scrutinize and regulate PBM practices more closely, ensuring they operate in a manner that supports rather than undermines pharmacy financial stability.

• Prohibiting Harmful Practices: Specifically targeting practices that have strained pharmacies, the Act prohibits PBMs from engaging in retroactive fee recoupments and spread pricing strategies. Such practices have historically placed pharmacies in precarious financial positions, making the supply chain vulnerable to counterfeit medications as pharmacies seek cost-saving measures.

• Ensuring Fair Reimbursement: By enforcing a pass-through pricing model, the Act ensures that pharmacies are reimbursed the actual cost paid by the health plan to the PBM for medications. This approach directly addresses the issue of under-reimbursement, reducing the financial pressures that can lead pharmacies to inadvertently engage with dubious suppliers.

Implications for Supply Chain Security:

These targeted reforms within the Florida Prescription Drug Reform Act are designed to directly impact the economic pressures pharmacies face due to PBM policies. By ensuring more equitable and transparent reimbursement practices, the Act mitigates one of the key factors that have made the pharmaceutical supply chain susceptible to counterfeit drugs. It represents a significant step towards safeguarding pharmacies from the financial instability that can compromise patient safety and healthcare integrity.

In essence, the Act provides a comprehensive framework for other states and federal entities to consider, highlighting the importance of addressing PBM practices as a critical component of enhancing supply chain security and protecting patient health.

Advocating for Change: Strategic Policy Reforms and Mobilization

The challenges posed by PBMs, PDABs, and drug affordability impact not just the healthcare industry and policymakers but directly affect patients seeking affordable, safe medications. This underscores the urgency for a unified advocacy movement towards systemic reform. Drawing on the initiatives of groups like PUTT and APCI, as well as the framework set by Florida's Prescription Drug Reform Act, we have a clear path to advocate for transparency, equity, and patient access across healthcare.

Calls to Advocacy

1. Broadened Engagement with Policymakers, Investors, and the Public: Advocacy efforts must expand to encompass not just policymakers but also investors and the broader public. Echoing APCI’s engagement with Vanguard Inc., it's critical to advocate for investor responsibility in healthcare practices. Moreover, by leveraging the legislative model of Florida's Prescription Drug Reform Act, advocates can champion similar transparency and regulatory measures nationwide. This expanded advocacy should also include a focus on ensuring PDABs operate with a mandate that balances drug affordability with the need for access to innovative treatments.

2. Unified Support for Legislative and Regulatory Reforms: Stakeholders are encouraged to unite in supporting and proposing legislative initiatives that tackle the foundational issues of PBM reform and the effective operation of PDABs. Advocacy should push for laws that not only enhance drug pricing transparency and regulate PBM reimbursement rates but also ensure PDABs do not inadvertently limit access to essential medications for marginalized communities.

3. Active Participation in Rulemaking Processes with Strategic Alliances: Stakeholders should actively participate in the rulemaking process, forming strategic alliances to influence the regulations governing PBMs and PDABs. This collective action is vital in shaping policies that promote fair reimbursement practices, safeguard pharmacy access, and ensure PDABs contribute positively to healthcare equity.

4. Comprehensive Educational Campaigns to Foster Awareness and Action: Initiating educational campaigns that explain the roles and impacts of PBMs and PDABs in the healthcare system is essential. By incorporating success stories from state and federal legislative achievements and insights from advocacy efforts, these campaigns can underscore the benefits of reform for pharmacies, patients, and the healthcare system at large. The goal is to inform the public, inspire support for reform efforts, and motivate active participation in advocacy initiatives.

The path toward meaningful reform in pharmacy benefit management, drug pricing, and the equitable implementation of PDABs is fraught with challenges. Yet, the successes achieved in regions like Florida provide hope that meaningful reform is possible. By rallying for targeted policy reforms and engaging in proactive advocacy, we can drive systemic changes that ensure the pharmaceutical supply chain operates with transparency, equity, and a steadfast commitment to patient health. Together, we have the power to reshape the landscape of drug affordability and access, guaranteeing that all people receive the comprehensive care and medications they deserve.

Beyond Medicine: Medicaid's Role in Bridging Healthcare and Housing

The evolving landscape of healthcare now acknowledges housing as a crucial element of well-being, marking a significant shift in public health recognizing certain goals advocates have trumpeted for decades - housing can be healthcare. Highlighted by a California Healthline article, this shift challenges old paradigms by recognizing stable, affordable housing as essential for optimal health outcomes. With states like California, Oregon, and New York at the forefront and thanks to a slew of waiver opportunitjes offered from the Biden Administration, some Medicaid programs are increasingly integrating housing services, reflecting a broader understanding that health is inextricably linked to our living conditions.

The Case for Housing as Healthcare: A Closer Look at the Evidence

The role of housing as a fundamental component of healthcare is being increasingly recognized among policymakers and supported by a growing body of evidence that underscores the critical impact of stable living conditions on health outcomes. The American Medical Association (AMA) has highlighted the essential nature of stable housing, pointing out that its absence significantly elevates the risk of various health issues, including severe infections that may necessitate amputation, and an increased likelihood of experiencing violent trauma.

Research featured in Health Affairs strengthens this viewpoint by establishing a clear link between housing stability and better health outcomes, emphasizing housing's non-negotiable position within a comprehensive healthcare framework. The benefits of stable housing can extend beyond physical health, with some studies showing significant mental health improvements through housing stability interventions, such as rental and foreclosure assistance.

The AMA further notes that people with access to stable housing are less prone to the stressors that lead to physical and mental health issues. Such environments reduce the risk of infectious diseases by providing a clean and secure living space conducive to health, facilitating easier access to medical care. Moreover, stable housing is linked to better chronic condition management, as it encourages an environment in which people can adhere to treatment plans and maintain regular contact with healthcare providers and is often accompanied with other medication necessities, such as food security and potable water.

Cost Savings and Healthcare Efficiency Through Housing

Integrating housing services into healthcare significantly enhances health outcomes and generates notable cost savings. By transitioning towards stable housing, reliance on high-cost healthcare services, such as emergency visits and hospital admissions, markedly decreases. A compelling study in Oregon demonstrated that providing affordable housing to nearly 10,000 individuals with unstable living situations resulted in a 12% reduction in Medicaid expenditures. Furthermore, this initiative increased outpatient primary care utilization by 20% and reduced emergency department visits by 18%, highlighting a shift towards preventive care.

This approach not only improves the health of Medicaid beneficiaries but also leads to more judicious healthcare spending. Allocating resources to housing services supports preventive care and vital services, amplifying the impact of stable housing on individual health and the overall healthcare system. Medicaid's strategic involvement in providing housing may prove a crucial tool for achieving better health outcomes and optimizing healthcare expenditure.

Medicaid Waivers and Housing Initiatives: Navigating New Pathways

The integration of housing services within Medicaid, facilitated by Section 1115 waivers and the innovative In Lieu of Services (ILOS) guidelines, represents a transformative approach to healthcare. These policy mechanisms are enabling states to address housing as a fundamental social determinant of health, acknowledging its critical impact on health outcomes.

Section 1115 Waivers: Expanding Medicaid's Reach

Section 1115 waivers grant states the flexibility to use Medicaid funds in novel ways that can include addressing housing instability, a key factor affecting health. The Kaiser Family Foundation reports on various state initiatives that leverage these waivers to directly tackle the housing needs of Medicaid enrollees. For example, some states have received approval to use Medicaid dollars for supportive housing services, such as helping people find and maintain stable housing. The programs with the best outcomes not o ly provide a method of entry but also work to ensure continuing housing stability. These waivers are instrumental in demonstrating how targeted housing support can lead to better health outcomes and reduced healthcare costs by minimizing the need for emergency care and hospital readmissions.

ILOS: Streamlining Support for Housing Needs

The Centers for Medicare & Medicaid’s (CMS) recent guidance on ILOS marks a significant policy shift, allowing Medicaid programs to offer housing-related services as enhancements to traditional medical interventions. This guidance enables states to provide a range of housing supports, including housing navigation assistance and one-time financial aid for security deposits or first month's rent. Importantly, while ILOS does not cover ongoing housing costs, it addresses critical barriers to stable housing for Medicaid enrollees, emphasizing the role of housing stability in achieving health equity.

State-Led Innovations in Housing and Health

States are at the forefront of integrating housing solutions within Medicaid, driven by the opportunities presented by Section 1115 waivers and ILOS guidelines. Shelterforce highlights innovative state programs that are setting precedents for how Medicaid can be utilized to support housing needs. For instance, initiatives that fund temporary housing for individuals transitioning out of hospital care not only provide immediate shelter but also contribute to better health outcomes and lower the likelihood of readmission. These programs exemplify the potential of Medicaid to address the holistic needs of its enrollees, underscoring the necessity of stable housing for overall health and well-being.

Through the strategic use of Section 1115 waivers and ILOS, Medicaid is evolving to meet the complex health and social needs of its enrollees. By recognizing housing as a critical component of healthcare, these policy innovations are paving the way for more integrated and effective approaches to improving health outcomes and advancing health equity. The success of state-led initiatives in leveraging these tools to address housing instability highlights the significant role of Medicaid in not only providing medical care but also in addressing the broader determinants of health.

Applying a Harm Reduction Perspective to Housing

Harm reduction in housing services adopts a compassionate approach, recognizing the varied challenges and needs of those facing housing instability. It emphasizes meeting people "where they are," providing flexible support without coercion, and respecting each person's autonomy and circumstances. This strategy is crucial for addressing the spectrum of housing stability, which ranges from homelessness to permanent, secure living situations. Each stage has unique health implications, with instability often worsening health conditions and hindering access to consistent healthcare.

Harm reduction aims to alleviate these health impacts by offering immediate, sometimes temporary, support to navigate towards more stable housing. This approach is vital for those with chronic health issues, mental health concerns, or substance use disorders, where a stable home can significantly influence health outcomes and quality of life. By tailoring services to meet personal needs—including healthcare access, mental health support, and substance use treatment—harm reduction in housing can effectively reduce the harms of instability and facilitate a path to stable living conditions.

Navigating Oversight in Medicaid's Housing Initiatives

The expansion of Medicaid to include housing services, aimed at addressing social determinants of health, introduces significant management and oversight challenges. A key concern is the potential for program exploitation, where resources meant for the most vulnerable are diverted or misused. The AIDS Healthcare Foundation (AHF) case, reported by the Los Angeles Times, exemplifies such risks, highlighting the need for stringent oversight to prevent organizations from prioritizing performance over patient care, qualityof life, and more permanent outcomes for program participants.

Ensuring Transparency and Accountability:

To counteract exploitation risks and guarantee the effective delivery of housing services, a strong emphasis on transparency, accountability, and comprehensive oversight is essential. The Center on Budget and Policy Priorities (CBPP) provides strategies for overseeing housing initiatives, stressing the importance of clear objectives, performance metrics, and consistent audits. These measures are vital for tracking service implementation, assessing health outcome impacts, and promoting ethical, efficient fund use.

Developing Robust Oversight Frameworks:

Implementing effective oversight requires layered scrutiny, including internal audits, external reviews, regular site audits, and autonomous, third-party feedback mechanisms for beneficiaries. Building partnerships across Medicaid programs, housing providers, healthcare entities, and community organizations can enrich oversight through varied insights and expertise. Such collaborative oversight efforts are pivotal in identifying and disseminating best practices, learning from experiences, and crafting innovative solutions to the intricate challenges of merging housing with healthcare services.

As Medicaid ventures into housing services, its success in enhancing health outcomes for vulnerable groups hinges on overcoming oversight hurdles. Committing to transparency, accountability, and strong oversight will protect against misuse, optimize resource allocation, and ensure housing's role as an integral part of comprehensive healthcare.

The Path Forward: Enhancing Medicaid's Role in Housing and Health Integration

As Medicaid evolves to more fully recognize housing as a crucial component of healthcare, a strategic and multifaceted approach is essential to ensure the effective integration of housing services. This approach should leverage the insights from recent policy developments and successful state initiatives, focusing on policy adjustments, increased funding, cross-sector collaboration, and robust oversight mechanisms.

Policy Adjustments and Increased Funding: A Foundation for Success

1. Policy Adjustments: Recent guidance on In Lieu of Services (ILOS) and the innovative use of Section 1115 waivers illustrate the potential for Medicaid to directly address housing instability. States should be encouraged to explore these and other policy tools to expand Medicaid's capacity to fund housing-related services, thereby acknowledging the profound impact of stable housing on health outcomes. Legislative and regulatory frameworks must evolve to support these changes, ensuring Medicaid can effectively contribute to housing stability for its enrollees.

2. Increased Funding: The expansion of housing initiatives within Medicaid necessitates substantial investment. This includes not only funding for direct housing assistance but also for the development of infrastructure that facilitates the delivery and coordination of services. Advocacy efforts are crucial to secure increased federal and state funding, aiming to bolster Medicaid's ability to meet the housing and health needs of its beneficiaries comprehensively.

Cross-Sector Collaboration: Building Bridges for Better Health

The success of housing initiatives within Medicaid is significantly enhanced by cross-sector collaboration. Partnerships among Medicaid agencies, housing authorities, healthcare providers, and community organizations are vital. These collaborations can draw on the strengths and resources of each sector to address the multifaceted challenges at the nexus of health and housing, creating integrated solutions that improve outcomes for individuals and communities alike.

Implementing Comprehensive Oversight and Adaptive Management

1. Comprehensive Oversight: To safeguard the integrity of housing initiatives and ensure resources are used effectively, a framework for comprehensive oversight is imperative. This framework should include clear implementation guidelines, success metrics, and regular evaluations to monitor impact and guide continuous improvement.

2. Adaptive Management: Effective management strategies are critical to navigate the complexities of integrating housing services within Medicaid. This includes ongoing training for program administrators and service providers, as well as the development of care models that seamlessly coordinate healthcare and housing services, ensuring that Medicaid enrollees receive the support they need to achieve and maintain stable housing.

The path forward for Medicaid's integration of housing services presents a unique opportunity to significantly improve health outcomes and advance health equity. By adopting a strategic approach that includes policy innovation, increased funding, cross-sector collaboration, and rigorous oversight, Medicaid can play a pivotal role in addressing the housing needs of its enrollees. This comprehensive strategy not only meets immediate housing challenges but also lays the groundwork for a healthier, more equitable future.

A Call to Action for Housing as Healthcare

The journey towards integrating housing into healthcare through Medicaid is not just a policy shift; it's a moral imperative. As we've seen, stable housing is not merely a foundation for individual well-being; it's a cornerstone of public health. The evidence is clear: when people have access to safe, stable housing, their health improves, healthcare costs go down, and communities thrive.

The Prescription for Curing Stigma

The prescription for curing HIV-related stigma begins with acknowledging a critical disconnect: over four decades into the HIV epidemic, medicine has advanced, yet societal attitudes remain anchored in the past. This enduring stigma casts a long shadow over those living with HIV, affecting mental health and quality of life, and fueling the virus's persistence. A recent UK survey highlights this stark reality, illustrating the urgent need to address stigma as a critical part of our HIV response.

As we aim for the 2030 goal of halting new HIV transmissions, it's clear that our approach must evolve. Curing stigma involves more than just medical breakthroughs; it requires a transformative shift in societal attitudes. This shift entails challenging deep-rooted misconceptions, prioritizing science over politics, and amplifying the voices of those living with HIV to educate our communities toward empathy and healing for all.

The Nature and Impact of HIV-Related Stigma

Manifestations in Healthcare Settings

HIV-related stigma in healthcare settings significantly undermines the quality of care and dignity of patients. This stigma manifests in various forms, from overt discrimination to subtle biases in patient-provider interactions. The American Medical Association's Journal of Ethics notes, "Despite legal protections...health care personnel have been known to stigmatize patients with HIV, in some cases refusing to treat them or providing substandard care." This highlights the ethical challenges and the need for empathy in healthcare.

The Centers for Disease Control and Prevention (CDC) advocates for a status-neutral approach in healthcare, focusing on high-quality, culturally sensitive care. This approach is vital in HIV care, where financial and insurance barriers often limit access to services. The CDC's framework aims to normalize HIV treatment and prevention, helping to reduce stigma.

Stigma in healthcare affects individuals' mental well-being and their willingness to seek care, adhere to treatment, and disclose their status. Furthermore, fear of judgment and discrimination can delay diagnosis and treatment, complicating HIV management.

Addressing healthcare providers' stigmatizing attitudes is a critical step in addressing stigma. It requires policy intervention, training, and sensitization to ensure all healthcare providers offer compassionate, stigma-free care to everyone, regardless of HIV status. This is essential for advancing public health and respecting the dignity of those affected by HIV.

Stigma in the Workplace and Society

HIV-related stigma transcends healthcare, significantly impacting workplaces and our broader society. In professional settings, people living with HIV face bias and misunderstanding. The International Labour Organization (ILO) reveals that workplace stigma threatens job security and mental well-being for people living with HIV.

Alarmingly, the ILO found that nearly 40% of respondents believe people living with HIV should not work in close contact with others. This misconception fosters a hostile work environment, leading to isolation and discrimination. Chidi King from the ILO states, “It is shocking that...myths and misconceptions are still so widespread... This survey is a wake-up call to reinvigorate HIV prevention and education programmes.”

Workplace stigma has extensive repercussions, violating workers' rights and hindering inclusive workplace efforts. The ILO advocates for dismantling stigma through education, policy reform, and promoting an empathetic work culture.

Beyond the workplace, societal stigma manifests in social ostracization and stereotypes, affecting daily life and influencing public opinion and policy. This stigma creates barriers to open HIV discussions, testing, and treatment.

Mental Health Implications

HIV-related stigma has a profound impact on the mental health of those living with the virus. Internalized stigma often leads to feelings of shame and guilt, heightening the risk of depression and anxiety. A significant study in AIDS Journal underscores the link between mental health disorders and HIV, revealing that in the U.S., HIV prevalence is notably higher among adults with serious mental illness (SMI), and among people living with HIV (PLWH), rates of major depression and generalized anxiety disorder are substantially higher than in the general population.

The study points out, "Mental health problems can increase the risk of HIV acquisition... Screening and treatment for mental health problems are essential to preventing vulnerable populations from acquiring HIV."

Stigma-induced isolation exacerbates mental health issues and impedes effective HIV management. Societal stigma, driven largely by misconceptions held over from the early days of the epidemic, inhibits open discussions about HIV, testing, and status disclosure, limiting access to tailored mental health resources.

Addressing these challenges requires integrating mental health services into HIV care, public education to counter stigma, and supportive environments in healthcare and communities. By taking a holistic approach to care and community, we can enhance the quality of life of people living with and affected by HIV and bolster the overall response to the epidemic.

The Role of Education in Shaping Attitudes

Comprehensive Sex Education

The fight against HIV-related stigma isn't confined to healthcare facilities or policy discussions; it begins in the classroom with comprehensive sex education, which is key to fostering the understanding and empathy required to eliminate stigma. Leading this educational charge are organizations like the Sexuality Information and Education Council of the United States (SIECUS) and Planned Parenthood Action, advocating for an educational approach that goes beyond traditional biology lessons.

Comprehensive sex education includes a wide range of topics such as sexual orientation, gender identity, relationships, consent, and crucially, HIV and other sexually transmitted infections (STIs). This type of education challenges myths and fears with factual, medically accurate information, fostering a more informed and empathetic understanding among young people.

However, the implementation of comprehensive sex education faces significant challenges, particularly due to the prevalence of abstinence-only programs. The Guttmacher Institute reports that the U.S. federal government spends $110 million annually on these programs, which are proven to be ineffective. Data shows that abstinence-only programs do not effectively prevent STIs or reduce sexual activity or pregnancy among teens. In fact, these programs often deny young people essential, life-saving information about their bodies, reproductive health, and sexuality. Consequently, fewer than half of high schools and only a fifth of middle schools in the U.S. teach the sexual health topics that the CDC considers essential for healthy young people.

The lack of comprehensive and accurate sex education perpetuates HIV stigma. Misconceptions about HIV transmission and the experiences of those living with the virus continue unchallenged, leading to fear and discrimination. This gap in knowledge isolates individuals living with HIV and hinders efforts to end the epidemic.

Navigating the Roadblocks to Inclusive Sex Education

Campaigns documented by the American Civil Liberties Union (ACLU) reveal a troubling trend towards abstinence-only education in public schools. This approach omits critically information about HIV, sexually transmitted infections (STIs), and broader sexual health topics. Notably, such curricula frequently overlook the experiences and needs of LGBTQ+ students, contributing to their marginalization and perpetuating HIV-related stigma.

The landscape of sex education across the United States is inconsistent, as highlighted by the National Conference of State Legislatures. While 19 states mandate sexuality education and 34 require HIV/AIDS instruction, the depth and breadth of these programs vary widely. In some regions, educators face restrictions on discussing topics like intercourse, contraception, and diverse sexual orientations, leaving a significant gap in students' sexual health knowledge.

Resistance from certain community groups and parents, often based on cultural or religious beliefs, adds another layer of complexity to the implementation of inclusive sex education. This opposition can sway local school boards and state legislatures, rendering the content and quality of sex education curricula largely ineffective and quite frankly, useless.

A critical shortfall in trained educators capable of delivering comprehensive, inclusive sex education exacerbates these challenges. Educators require proper training and resources to effectively navigate sensitive topics, including HIV. Without this support, the opportunity to dispel stigma and misinformation is lost.

Addressing these barriers necessitates a concerted effort to advocate for policies supporting comprehensive, inclusive, and medically accurate sex education. Engaging communities and parents in meaningful dialogue about the importance of such education is crucial for fostering a generation well-equipped to understand, empathize with, and support people living with HIV. This approach not only contributes to reducing HIV stigma but also aligns with broader public health goals.

Strategies for Dismantling Stigma

Policy and Community Initiatives

To dismantle the pervasive stigma surrounding HIV, a comprehensive strategy encompassing policy reform and community engagement is required. This approach should involve several key elements:

1. Policy Reform:

• Comprehensive Sex Education: Policies should mandate comprehensive sex education in schools. This education must be medically accurate, culturally appropriate, and inclusive of all sexual orientations and gender identities.

• Workplace Policies: Public and private sector policies should be implemented to protect people living with HIV from discrimination in the workplace. This includes creating supportive work environments and providing education about HIV to dispel myths and fears.

• Healthcare Reforms: Healthcare policies should promote a status neutral approach, ensuring that people living with HIV receive stigma-free, high-quality care. Training healthcare providers to address their biases and provide empathetic care is crucial.

2. Community Engagement:

• Public Awareness Campaigns: Utilizing platforms for public education to challenge misconceptions about HIV. Campaigns should focus on normalizing conversations about HIV, promoting understanding, and reducing fear.

• Empowering Voices of People Living with HIV: Encouraging people living with HIV to share their stories and experiences can humanize the condition and challenge stigma. This aligns with the broader public health goals of organizations like the White House's National HIV/AIDS Strategy.

• Community-Based Programs: Implementing community-based programs that focus on resilience and support for people living with HIV. These programs can provide a platform for education, advocacy, and peer support.

3. Legal Advocacy Against Discriminatory Laws

• Addressing Criminalization: Modernizing laws that criminalize HIV exposure and transmission is vital. In the U.S., 32 states and two territories still have such laws, impacting 68% of people living with HIV. These laws often result in severe penalties, including extended prison terms and mandatory sex offender registration.

• Reform and Impact: Efforts to reform these laws have seen progress, with several states repealing or modernizing HIV-specific laws and removing sex offender registration for revised law convictions. This legal advocacy is key to reducing stigma and supporting the rights of marginalized communities affected by HIV.

4. Global Perspective: Learning from International Success

• Australia's Model: Australia's success in reducing HIV rates highlights the effectiveness of community-led initiatives and government collaboration. Their approach emphasizes peer support and progressive policies.

• Stigma Reduction and Policy Change: Australia's commitment to reducing stigma and removing non-evidence-based laws criminalizing HIV transmission is a key part of their HIV prevention strategy. This approach is seen as a pathway to virtually eliminate HIV transmission by 2025.

• Adopting Global Lessons: Embracing Australia's strategies, which combine policy reform, community engagement, and education, can guide other nations in transforming their HIV response from stigma to understanding and support.

In our journey to eradicate the shadows of HIV stigma, the path forward is clear and urgent. We stand at a pivotal moment where collective will and action can transform the landscape of HIV understanding and care. The Prescription for Curing Stigma is not just a metaphor—it's a call to action, a blueprint for change.

This change demands more than passive acknowledgment; it requires active engagement from every corner of society. Policymakers, healthcare providers, educators, business leaders, and community members must unite in this cause. We need policies that are inclusive and empathetic, healthcare that is stigma-free and compassionate, education that is comprehensive and enlightening, and community support that is unwavering and inclusive.

The voices of those living with HIV are not just stories; they are powerful testimonies that can shatter misconceptions and humanize the epidemic. Their experiences and insights are the most potent weapons in our arsenal against stigma. By amplifying these voices, we not only challenge outdated beliefs but also pave the way for a future where HIV is met with understanding, not fear; with support, not judgment.

As we look towards a future where HIV infections are prevented and every person with HIV lives a life free from stigma and discrimination, let's remember that the power to effect this change lies within each of us. It's time to move beyond awareness to action, beyond empathy to advocacy. Together, we can dismantle the barriers of stigma and fear, creating a world where every person affected by HIV can achieve their full potential for health and well-being.

The Prescription for Curing Stigma is more than a concept—it's a commitment to action, a promise for a better tomorrow. Let's embrace this challenge with determination and hope, knowing that our united efforts will lead us to a stigma-free future and ending the HIV epidemic once and for all.

States Push PDABs Despite Warning Signs, Patient Concerns

The debate over how the U.S. tackles rising healthcare costs is as constant as the sun setting in east. Most Americans feel the financial pressures from the high cost of their healthcare, evidenced by individual households holding 27% of the nation’s $4.3 trillion health-related expenditure burden. Healthcare spending is fragmented and multifaceted, being comprised of expenses such as hospitals, residential and personal care facilities, medical providers, technology, and retail prescription drugs. Despite the complexities of the healthcare market, pharmaceutical expenditures are often the most simple target to attack, often accompanied by solutions that seem way too good to be true. The fact is, access to prescription drugs is a significant part of modern medicine but there is nothing simple about how prescription drugs are brought to market and sold to consumers. In 2022, $633.5 billion was spent in the U.S. on prescription drugs, yet overall prescription drug expenditures by the government, private insurers, and patients were less than $1 out of every $7 spent on healthcare.

In recent history, in an attempt to create a “simple” solution to the costs John and Jane Q. Public pay for prescription drugs, through legislation, several states have created PDABs. PDABs are Prescription Drug Affordability Boards, also called Prescription Drug Advisory Boards. In theory, a board created to lower the cost of drugs for patients sounds like a good thing. However, the manner in which PDABs are currently set to operate is more harmful than good. Patients are not included in the development of the PDABs' decisions when those decisions directly affect their lives.

That is why the Community Access National Network (CANN) entered this policy and advocacy space. The boards have the wrong focus and don’t have patients’ interests as the priority. There is a difference between access and affordability. Jen Laws, C.E.O. of CANN, states, “Ultimately, CANN's focus is 'access' - it's in our name. Cheap gimmicks often pose serious potential to disrupt access for patients because we're the interest group here with the least in the way of resources (time, money, manpower). It's why we do what we do, and it's why we're going to keep doing what we do."

The prevalent tool PDABs utilize to lower costs is Upper Price Limits, or UPLs. The myopic focus is the allowable maximum a plan might reimburse a pharmacy or provider for any particular medication. However, this focus is not on lowering the price of what patients pay. A UPL does not determine what drug manufacturers charge for their drugs. It only sets the maximum that insurance plans will reimburse for drugs. That does not directly benefit patients because there is no mandate to pass any “savings” back to patients, for plans to retain medications with lower reimbursements, or for patients to have lower cost-sharing related to these medications. In general, patients pay for medications through co-pays and patient assistance programs. Although UPLs lower drug prices for payors, they increase the price patients potentially pay in terms of access by threatening the financial stability of providers and pharmacies, incentivizing utilization management that prioritize certain medications over others (regardless of an individual patient’s needs), and disrupt the provider-patient relationship by inserting the interests of payors over that of patients.

CANN has created multifaceted resources to educate the public about PDABs, their challenges, and possible solutions. People engage and comprehend in different ways. As such, CANN created varied communications. Long-form blog posts were written to be detailed sources of education and advocacy. A white paper was created as a downloadable handout to empower patients and enable them to engage with local PDABs or legislatures that are considering them in states that do not have them yet. For visual learners, CANN created an animated video that gives an overview of PDABs and their challenges, which is digestible and easily shareable.

With UPLs, the price patients potentially pay by losing access is more damaging than the monetary price tag of a drug a payor considers. UPLs that are set too low can cause drug manufacturers to reduce the production of drugs or place drug purchasing groups in the position of discounting distribution to a particular state altogether if low reimbursement makes them too costly to sell in that state. No purchaser or re-seller can sell to a state at a cost. No pharmacy can distribute a medication that costs them more to provide than they get paid in return. This creates shortages or removal of life-saving medications from the market, resulting in delays in care or patients being forced to utilize medicines that aren’t as efficacious as they and their physicians’ desired prescriptions.

UPLs also damage patient access by adversely affecting the 340B Drug Pricing Program entities that use the revenues from discounts to provide medications and other healthcare services to vulnerable populations without recourse for care. Lower revenues mean fewer services and possibly closures of facilities or program restrictions. AIDS Drugs Assistance Programs are largely dependent on using their 340B savings to extend access to care to poorest people living with HIV. We’re already seeing providers discuss this concern relative to insulin price caps. In a recent 340B Report article, the issue is summed up as follows: “Before 2024, most insulins had list prices of $300-$500 or more and were 340B penny-priced, so 340B providers earned savings of $300-$500 per prescription, Meiman said. However, now that many insulin list prices are $35, the 340B savings could drop to around $8 per prescription, she said. Historically, 340B savings on insulin have accounted for around 10% of community health system 340B revenue, she said.” Colle Meiman, a national policy advisor for the State & Regional Associations of Community Health Centers, also acknowledged this problem is a bit “counterintuitive” to how most policymakers think about drug pricing and reimbursements.

Moreover, lowering the price insurers are allowed to pay for medications is a double-edged sword. While on the surface, it seems like it would save payors money, it potentially only benefits PBMs in the short term and is an additional barrier to patient access. PBMs make their money from the profits they get via drug rebate revenues. Low UPLs will result in drug manufacturers lowering rebate levels and therefore lowering how much PBM’s might make on a particular medication. This means that PBMs could potentially increase the occurrence of benefit designs that restrict drug formularies to steer towards medications that result in more profit, not what is best for patients’ health. This already happens and is a concern many providers are beginning to voice. Additionally, they could enforce more utilization management, which again is a barrier to access but a way to increase their profitability.

CANN is energized to shine the light on PDABs and offer better solutions. Jen Laws explains, "Instead of nonsensical quick fixes, which aren't fixes to anything other than next quarter profits for payors, legislators should be focused on addressing the self-dealing nature of 'vertical integration', shoring up incentives for innovation, and meaningfully fixing benefit design that currently disadvantages patient access." Instead of a PDAB, states should consider a board focused on the patient perspective to evaluate benefit plan designs and offer recommendations to each state legislature about policy actions that will benefit patients as the priority stakeholder group.

In partnership with HealthHIV and The AIDS Institute, CANN will continue this work. It's crucial to stay abreast of the inner workings of policy and to advocate for the public proactively. Digging into the weeds with a patient focus enables advocacy groups to sound the alarm to the public as well as take the patient's perspective to those in power. Those in power are detached from the humanity behind the dollars and cents on their financial ledgers.

The Growing Burden of Medical Debt for Insured Americans

Health insurance, designed as a financial safeguard against illness and chronic conditions, presents a paradox in America: many insured individuals are burdened by substantial medical debt. This contradiction highlights systemic flaws in our healthcare system, where high out-of-pocket costs, aggressive debt collection by hospitals, and policy gaps create a crisis impacting financial stability, equitable healthcare access, economic mobility, and both financial and health disparities.

The Rising Tide of Medical Debt Among the Insured

Penelope Wingard's experience, a 58-year-old black woman from Charlotte, North Carolina, starkly illustrates the human cost of medical debt for the insured. After her breast cancer treatment in 2014, she faced a new challenge: escalating medical bills. Despite Medicaid coverage during treatment, she found herself uninsured and overwhelmed by costs for follow-up care. "My hair hadn’t even grown back from chemo, and I couldn’t see my oncologist," she recalls, underscoring the immediate financial burden of her illness.

Her financial woes deepened with subsequent medical issues, including an aneurysm and vision problems, leading to tens of thousands of dollars in debt. "It’s like you’re being punished for being sick," Wingard's experience reflects a broader trend affecting many insured Americans - not just the uninsured.

This trend is echoed in recent reporting by The Guardian, showing most hospital debt in the U.S. now involves insured patients, rather than uninsured patients, often due to high deductibles and unexpected out-of-pocket costs. The Kaiser Family Foundation’s 2023 Employer Health Benefits Survey further highlights it, noting a rise in high-deductible health plans, which, despite lower premiums, can lead to significant financial strain during medical emergencies. This change also represents employers selecting benefit designs that shift costs to employees or, more directly, a lower overall value of compensation packages.

Wingard's ordeal and these findings paint a concerning picture of U.S. healthcare, where insurance all too frequently fails to provide adequate financial protection, underscoring the need for a critical reevaluation of insurance structures and policies.

The Role of Hospitals and Aggressive Collection Practices

The medical debt crisis in the U.S. is worsened by many hospital systems, particularly so-called nonprofit hospitals, adopting aggressive debt collection tactics. A Nonprofit Quarterly article highlights that these hospitals, despite tax exemptions, often pursue lawsuits, wage garnishments, and home liens, exacerbating patients' financial woes.

The Human Rights Watch report, "In Sheep’s Clothing," reveals that about 60% of U.S. community hospitals are tax-exempt nonprofits, yet they spend significantly less on charity care than they receive in tax benefits, raising questions about their commitment to community service.

Additionally, the decline in charity care, vital for both uninsured and insured patients facing high out-of-pocket costs, is alarming. Hospitals' aggressive pursuit of unpaid bills, including legal actions and debt sales, seemingly contradicts their community-serving role and intensifies the medical debt crisis.

In response, legislative measures like New York State's Fair Medical Debt Reporting Act are emerging. This law, preventing hospitals from reporting unpaid medical debts to credit agencies, marks progress towards protecting patients and signals a shift towards more ethical debt management practices in healthcare.

Policy Gaps and the Need for Reform

The Affordable Care Act (ACA) and Medicaid Expansion stand as monumental efforts to increase coverage. Yet, the persistence of medical debt among the insured underscores a critical disconnect between policy intentions and real-world outcomes.

The ACA and Medicaid Expansion: Coverage vs. Cost

While the ACA and Medicaid Expansion have expanded healthcare access, they often fail to protect individuals from medical debt due to rising out-of-pocket costs. The Peterson-KFF Health System Tracker Brief indicates that the ACA’s maximum out-of-pocket limit is increasing faster than wages, burdening insured individuals with escalating healthcare expenses.

High-deductible health plans (HDHPs) exacerbate this affordability crisis. These plans, with lower premiums but higher initial costs, are increasingly common. The Kaiser Family Foundation’s 2023 Employer Health Benefits Survey shows a rise in HDHP enrollment, leading to significant debt for families as they pay more out-of-pocket before insurance coverage starts.

Coverage limitations under the ACA also contribute to this issue. Essential health benefits vary by state and plan, often leaving gaps in coverage for critical services like mental health or certain prescriptions. This variability, coupled with high deductibles, results in insured individuals facing substantial medical debt, contradicting the purpose of insurance.

Addressing this requires reevaluating health insurance structures and regulatory frameworks to balance affordable premiums with comprehensive, consistent coverage, reducing the risk of overwhelming medical debt for insured individuals.

Commonwealth Fund's 2023 Health Care Affordability Survey: Key Insights

The Commonwealth Fund's 2023 Health Care Affordability Survey reveals more than statistics; it highlights the real struggles of Americans with healthcare costs. The survey underscores the healthcare affordability crisis, showing that insurance doesn't always shield from financial burdens.

A major finding is the impact of high deductibles and copayments, which consume a significant part of many people's incomes, forcing tough choices like delaying medical care or incurring debt. Particularly affected are lower-income families, those with chronic conditions, and older adults, who often face a cycle of debt and deferred care, worsening health disparities.

The survey also points to a trend of underinsurance, especially in employer-sponsored plans with high deductibles, leaving many at financial risk. These insights call for urgent policy reforms to make healthcare truly affordable, focusing on reducing out-of-pocket costs, restructuring insurance plans, and enhancing subsidies for those in need.

State-Level Initiatives: Pioneering Change

States are at the forefront of combating medical debt with innovative solutions. The Commonwealth Fund State Protections report highlights diverse strategies to mitigate medical debt's impact.

Key initiatives include laws to limit aggressive hospital debt collection practices, crucial for protecting vulnerable groups like low-income families and those with chronic conditions. Some states have set legal boundaries on pursuing unpaid medical bills and capped interest rates on medical debt.

Expanding eligibility for charity care and financial assistance is another significant move. This broadening ensures more people, particularly those with limited resources, can access medical care without the fear of crippling debt, thereby improving community health outcomes.

States are also focusing on enhancing transparency in medical billing and insurance coverage, ensuring patients have clear information about service costs and their financial obligations. This clarity is essential for informed healthcare decisions and avoiding unexpected bills.

Furthermore, states are strengthening consumer protection laws to defend against unfair medical billing practices, holding providers and insurers accountable for billing errors and offering patients better dispute resolution options.

These state-level actions, varying in scope but united in purpose, demonstrate encouraging progress toward a more equitable healthcare system. They address not only the symptoms of medical debt but also several of the root causes, paving the way for broader healthcare reforms. These initiatives, alongside federal efforts, are shaping a future where healthcare affordability is accessible to all, not a privilege for a few. State governments' role in this fight is pivotal, with their policies and programs serving as models for national reform and effective strategies to alleviate medical debt.

Federal Actions: A Unified Approach with Enhanced Consumer Protection

Federally, initiatives like the White House Convening on Medical Debt and the Consumer Financial Protection Bureau's (CFPB) plan are key in combating medical debt. These efforts merge federal oversight with state innovation, addressing medical debt's complexities.

The White House Convening united federal and state policymakers, healthcare experts, and advocates to strategize on reducing medical debt and improving healthcare policies. This meeting was pivotal for sharing insights and identifying best practices for nationwide implementation, recognizing medical debt as a multifaceted issue.

Additionally, the CFPB's plan, noted in a National Consumer Law Center (NCLC) announcement, marks a significant move towards consumer protection. It proposes prohibiting medical debts from being reported on credit reports, a major relief for those burdened by medical debt. This initiative is widely supported by consumer groups and reflects an understanding of the disproportionate impact of medical debt on financial stability.

The collaboration of federal agencies like the Department of Health and Human Services, the CFPB, and the Centers for Medicare & Medicaid Services is crucial in formulating effective healthcare policies. Their joint efforts are expected to lead to comprehensive strategies that significantly alleviate the burden of medical debt.

This federal approach, emphasizing interagency cooperation and stakeholder engagement, is helping to create policies and practices that effectively reduce medical debt, integrating federal oversight with state-level innovation and consumer protection measures like the CFPB's plan. This integrated strategy is essential for relieving American families of medical debt and advancing towards a more equitable healthcare system.

The Blind Spot: Medical Credit Cards

Despite the good intentions of these proposals, a “blind spot” persists and more and more hospital systems are taking advantage of it by pressuring patients to agree to take on “medical credit” debt, prior to providing services - even in emergency departments. The most popular of these programs is known as “Care Credit” and the American public assumed some $23 billion in medical credit card debt across- more than 11 million users from 2018 through 2020. Unlike traditional medical debt, these medical credit programs accrue interest and do not qualify for financial assistance or charity care. They result in as much if not more damage to patient-consumer credit reports as traditional medical debt.

Once primarily limited to dental costs, which are not a required covered benefit for adults, the company that owns Care Credit says it believes patients typically generate this debt through “elective procedures”. However, patients urged to accept credit based medical debt in an emergency room or when facing cancer care or even in seeking dental care for an infected tooth may not feel these procedures are “elective” and the financial institution is not necessarily going to operate with the same definitions the general public would. Indeed, it does not serve Synchony’s interests to do so. In fact, Synchrony partners with multiple provider associations and as of 2023 with at least 17 hospital systems or about 300 hospitals but, when interviewed, refused to provide details because those agreements likely include “sponsorships” or what would otherwise be called a kick back scheme. That scheme structure is very likely prohibited by federal law protecting patients of public health programs like Medicare from providers and their affiliates that would take advantage of needy or elderly patients.

Once assumed as a means of paying for medical care, medical credit card debt reports just like traditional credit card debt and patient-consumers are no longer protected from those specific protections policymakers are considering now.

Conclusion and Call to Action

It's evident that this crisis is not just financial but a moral and systemic failure. The experiences of individuals like Penelope Wingard and findings from the Commonwealth Fund's 2023 Health Care Affordability Survey underscore the need for compassionate healthcare reform.

Policymakers, healthcare providers, patient advocates, and citizens must unite to address this crisis's root causes and reshape our healthcare system.

For Policymakers:

• Implement policies that go beyond expanding coverage to ensure affordability and accessibility.

• Reassess high-deductible health plans and their impact on families.

• Mandate comprehensive coverage in health plans, including closing the essential benefits loophole and ensuring network parity for services like mental health and chronic disease management.

• Enforce regulations ensuring hospitals commit to community-serving mandates, particularly in providing sufficient levels of charity care to justify nonprofit status. This can be implemented on both the state and federal levels.

For Healthcare Providers and Institutions:

• Prioritize ethical patient care over financial gains.

• Establish transparent billing practices and expand charity care programs.

• Collaborate with community organizations to identify and support vulnerable patients.

• Train staff in empathy and patient advocacy, focusing on the human aspect of healthcare.

For Patient Advocates and Community Members:

• Support legislation that protects patients from aggressive debt collection and unfair billing.

• Educate communities about their rights and resources regarding medical debt.

• Partner with local health systems to develop patient-centered care models.

For All Stakeholders:

• Collaborate to create a healthcare system that balances efficiency with empathy, justice, and accessibility.

• Strive to make medical debt a rarity, ensuring healthcare access for all, regardless of insurance status.

• Remember the human element in healthcare.

We possess the knowledge and resources to drive change. Let's collectively push for policies that safeguard the vulnerable and work towards a healthcare system where access is a right, not a privilege. The time to act is now and it is past time that our state and federal policymakers evaluate their allegiance to hospitals systems abusing government programs, the dollars that support those programs, and the patients those dollars are meant to benefit.

Profit Over Patients: Challenging the Understaffing Crisis in Healthcare

On December 31, 2023 former U.S. Representative Eddie Bernice Johnson suffered and died in a completely preventable yet entirely foreseeable tragedy. Rep. Johnson, a dedicated nurse and a fervent advocate for equitable healthcare, succumbed to an infection contracted in a rehabilitation facility, a direct consequence of medical neglect. This incident is a glaring example of the systemic issues plaguing our healthcare institutions, where intentional understaffing and profit-driven motives often come at the expense of patient care and staff well-being. Her experience tragically highlights the broader systemic issues in healthcare, including rampant understaffing and the consequences of healthcare system consolidation.

The Tragic Circumstances of Rep. Johnson's Passing

According to a Texas Tribune report, Rep. Johnson died a “terrible, painful death” from an infection caused by negligence at her Dallas recovery facility following back surgery. The infection was a result of being left to lie in her own feces and urine for roughly an hour while she repeatedly called for help that didn’t come. The facility reportedly told family that all staff were unavailable as she called for help due to being in a training. Her son, Kirk Johnson, minced no words as he stated, "She was screaming out in pain, asking for help. If she had gotten the proper care, she would be here today.”

The family notified Baylor Scott & White Health System and Baylor Scott & White Institute for Rehabilitation of their intention to sue on the grounds of medical negligence. The lawsuit, if not settled, will highlight the deadly consequences of inadequate patient care in healthcare facilities. This legal battle is complicated by Texas law, which limits medical malpractice lawsuit awards to $250,000. Such legislative decisions, influenced by powerful hospital lobbies, not only restrict legal recourse for patients but also reflect deeper systemic issues in healthcare governance where institutional profits often overshadow patient rights.

The limitation on medical malpractice awards in Texas exemplifies a troubling trend in healthcare legislation. These laws, as detailed in a Miller & Zois report, often protect healthcare institutions at the expense of patient health and safety while significantly limiting patients' ability to seek fair compensation for medical negligence.

This legislative backdrop, coupled with intentional understaffing in healthcare facilities, creates a perilous situation where patient rights are limited and institutions are insulated from liability when their cost cutting measures cost lives. Maximizing profit and administrative and shareholder value by understaffing care facilities heightens the risk of medical errors, burns out staff, and creates unsafe working conditions. Yet, when these cost-cutting measures lead to harm, patients find their legal recourse severely restricted by malpractice caps while hospital staff burns out and are exposed to greater occupational hazards. The only ones not on the losing end are the hospitals and their executives.

Staffing Shortages or Healthcare Profiteering?

Across the country, as healthcare corporations report burgeoning profits, the reality within their healthcare facilities tells a story of compromised care and strained resources. Let’s take Hospital Corporation of America (HCA), the largest hospital system in the country, as an example. As reported in The Guardian, a study by the Service Employees International Union (SEIU) highlights the disparities, revealing that staffing ratios at HCA Hospitals in 2020 were alarmingly 30% lower than national averages. Despite $7 billion in profits and $8 billion allocated to stock buybacks and paying out nearly $5 billion in dividends to shareholders, the investment in patient care, particularly in terms of staffing, remains inadequate.

The prevailing narrative of a nursing shortage in the United States is rigorously challenged by facts and voices from within the healthcare sector. National Nurses United (NNU) asserts that the core issue is not a lack of nurses but rather the widespread unwillingness of nurses to work under unsafe conditions. This perspective contradicts the healthcare industry's narrative and points to systemic issues in workforce management and underinvestment in medical staffing by hospital executives.

The intentional understaffing by healthcare facilities, as seen in cases like HCA Hospitals, is often driven by financial motivations. By keeping staffing levels low, these facilities aim to maximize profits, often at the expense of both patient care and staff well-being. This approach has led to a situation where the healthcare workforce is being pushed to its limits, leading to high turnover rates and a growing reluctance among nurses to work in such conditions.

The narrative of worker shortages is further complicated by the trend of healthcare system consolidation, which significantly reshapes healthcare markets, often at the expense of patient care and staff well-being. In May of 2023 The RAND Corporation gave testimony to the U.S. House of Representatives Committee on Ways and Means, Subcommittee on Health which underscored that consolidation frequently leads to higher healthcare costs without corresponding improvements in quality. Characterized by mergers and acquisitions across markets, this trend typically results in reduced competition, higher prices, and a focus on revenue generation over patient-centric values. Moreover, when private equity is involved, as highlighted by The British Medical Journal (BMJ), it often exacerbates patient harm.

The Human Cost of Cost-Cutting

Impact on Healthcare Workers: Nurses and other healthcare staff, the backbone of patient care, are stretched to their limits. A study by the University of Pennsylvania highlights the high levels of nurse burnout, a direct consequence of inadequate staffing. The study surveyed over 70,000 nurses and found that the chronic stress caused by high nurse-to-patient ratios significantly impacts their mental and physical health. The turnover rate in nursing, as reported by STAT News, is a testament to the unsustainable working conditions, with many nurses leaving the profession or seeking less demanding roles.

Patient Safety and Care Quality: The impact of understaffing on patients is equally alarming. According to the National Center for Biotechnology Information (NCBI), inadequate staffing in nursing homes is linked to increased incidents of falls, bedsores, and a general decline in the quality of care. This neglect is not limited to nursing homes; hospitals across the nation face similar challenges. As in the case of Rep. Johnson, patients often experience delayed care, unmet basic needs, and an increased risk of medical errors due to the high workload on understaffed healthcare workers.

The understaffing crisis extends beyond individual facilities. As National Nurses United points out, the issue is systemic and has become an industry standard practice. These ethically dubious practices have far-reaching consequences, eroding the sustainability of the healthcare system and diminishing public trust in its ability to provide competent and compassionate care.

Upholding Ethical Standards in Healthcare

The ethical implications of understaffing and system consolidation are profound. It's not merely a matter of operational efficiency; at its core, it's about honoring a fundamental commitment to patient care and worker dignity. The primary ethical concern in healthcare should be the obligation to provide safe, effective, and compassionate patient care, an obligation that is often directly undermined by profit-driven decisions.

The direct consequences of understaffing and consolidation, such as compromised patient safety, increased medical errors, and a decline in the quality of care, represent a breach of the ethical duty healthcare providers owe to their patients. When financial priorities overshadow patient needs, the very essence of healthcare's moral foundation is shaken. This shift not only impacts patient outcomes but also erodes public trust in healthcare systems.

The alarming levels of burnout, stress, and turnover among healthcare workers, particularly nurses, reflect a work environment that neglects their physical, emotional, and professional well-being. This neglect raises serious ethical concerns about the healthcare industry's commitment to its workforce. When staff well-being is compromised for operational efficiency or financial gain, the entire healthcare system suffers, leading to a demoralized workforce and diminished patient care.

The healthcare industry faces a critical ethical dilemma: balancing financial responsibilities with the imperative of humanistic care. While healthcare facilities have fiscal duties to their stakeholders, these must never be allowed to eclipse their ethical obligation to prioritize high-quality patient care and foster a safe and supportive work environment. The pursuit of profit must be balanced with the moral imperative to care for both patients and healthcare workers humanely. This balance is essential not only for the integrity of healthcare providers but also for the long-term sustainability of the healthcare system as a whole.

Addressing these ethical challenges is not just a moral imperative but a crucial step towards systemic reform for a more humane and effective healthcare system and, frankly, reducing costs to patients by way sufficient retention of nursing talent - reduced turn over means reduced labor costs which then translates to reduced insurance billing and less medical debt.

Concrete Steps Towards Reform

The reality of understaffing and the challenges posed by healthcare system consolidation in our healthcare system demand immediate and decisive action. We must engage in targeted advocacy and policy reform. Here are specific actions that individuals and organizations can undertake to drive meaningful change:

1. Contact Legislators: Advocate for federal and state legislation that mandates safe staffing ratios in healthcare facilities, addresses the challenges of healthcare consolidation and transparency, and holds hospitals accountable for malpractice. This includes challenging laws that limit malpractice awards, as these can protect healthcare institutions at the expense of patient rights.

2. Support Nursing Unions: Participate in advocacy campaigns of unions like National Nurses United, supporting their efforts for better working conditions and fair staffing levels. These unions play a crucial role in voicing the concerns of healthcare workers and advocating for their rights.

3. Engage with Healthcare Boards: Advocate for ethical staffing practices and policies that prioritize patient care over profit in healthcare organization board meetings. It's essential to influence decision-makers at the highest level to bring about systemic changes.

4. Advocate Against Unchecked Consolidation: Support policies that scrutinize healthcare mergers and acquisitions, as highlighted by the National Conference of State Legislatures (NCSL), to ensure they prioritize patient care and staff welfare. This includes backing state and federal initiatives to enhance oversight on healthcare mergers and acquisitions.

We must shift the focus from profit margins to the pillars of empathy, compassion, and quality care. It's time to honor the legacy of advocates like Rep. Eddie Bernice Johnson and ensure that our healthcare system upholds its fundamental commitment to patient care and worker dignity. Implementing these actions can lead to a more empathetic, compassionate healthcare environment, where patient care and staff welfare are prioritized, paving the way for a sustainable and trustworthy healthcare system.

Eye on 2024: Federal Action on PBMs, 340B, and Telehealth

2024 stands as a pivotal year in federal healthcare policy, potentially overshadowed by a highly contentious and partisan political landscape during an election year. The backdrop includes ongoing budget fights, looming cuts threatening vital healthcare programs, and a shifting balance of power in Congress thanks to at least one member being removed from office and a couple of high-profile resignations, further complicating the path to meaningful bipartisan legislation. Amidst this chaos, key focus areas such as reforms related to Pharmacy Benefit Managers (PBMs) and the 340B Drug Pricing Program, as well as telehealth expansion are at the forefront of potentially significant policy shifts, all while renewed attacks on the Affordable Care Act (ACA) add to the uncertainty of healthcare reform in an election year.

Pharmacy Benefit Managers: Pushing for Transparency and Market Reform

PBMs have come under increasing scrutiny in the U.S. healthcare system, particularly regarding their role in prescription drug pricing. Dominated by just three key players, PBMs face criticism for opaque pricing models and practices that may contribute to rising drug costs. The Lower Costs More Transparency Act of 2023 represents a bipartisan effort to enhance transparency in PBM operations, requiring detailed disclosure of pricing and costs. The future of this legislation depends on whether the Senate will adopt the House version or introduce its own bill, with several Senate committees recently advancing similar proposals.

Experts, including those from the Brookings Institution, caution that while increased transparency is a positive step, it may only modestly impact overall drug costs. The effectiveness of these reforms hinges on addressing the complex relationships among PBMs, drug manufacturers, insurers, and healthcare providers.

The current PBM model, often criticized for incentivizing high drug list prices through 'spread pricing,' is under review. Proposed reforms, like those in the Pharmacy Benefit Manager Reform Act, aim to eliminate spread pricing and ensure that rebates and savings directly benefit plan sponsors and patients.

Additionally, the PBM market's consolidation and “vertical integration” (or self-dealing by another name) raises concerns about market power and its influence on drug pricing. With a few firms controlling a significant market share, PBMs' market power could lead to disproportionate profits, underscoring the need for regulatory measures to ensure fair pricing and competition.

As the healthcare community navigates these reforms, the focus remains on ensuring that changes in PBM operations directly benefit patients, especially those in underserved communities disproportionately affected by high drug costs.

340B Program: Addressing Challenges for Future Reforms

The 340B Drug Pricing Program, essential for providing discounted drugs to healthcare providers serving underserved communities, is at a critical juncture. Facing legal challenges and calls for reform, 340B is under scrutiny, particularly regarding its operational complexities and the definition of a 340B-eligible patient. This definition, crucial in determining who accesses discounted drugs, has been a point of contention, with legal interpretations suggesting a need for broader inclusivity, as noted in Bloomberg Law's analysis.

Advocates, including those supporting people living with HIV, recognize the program's significant impact but seek more direct patient benefits, a sentiment echoed in CANN's blog. The current model's effectiveness in providing direct patient benefits, such as reduced drug prices, is being questioned.

Efforts for greater transparency and accountability are intensifying, with state-level initiatives aiming to ensure that program savings directly benefit patients, especially those with financial barriers to medication access, as highlighted in Avalere's insights. State authority to regulate 340B, however, is still in question as Arkansas and Louisiana face lawsuits around recently passed legislation.

Amidst these challenges, 340B's commitment to aiding underserved communities remains paramount. Collaborative efforts among lawmakers, healthcare providers, and patient advocacy groups are crucial to reform the program, ensuring it continues to provide equitable access to care and addresses key issues like medical debt.

Telehealth: A Defining Year in 2024

2024 is set to be a defining year for telehealth, a sector transformed by the COVID-19 pandemic. This year will witness crucial legislative decisions that could shape the future of access to telehealth services.

At the forefront are policy decisions regarding Medicare reimbursement flexibilities for telehealth, as noted in Modern Healthcare's article. Set to expire in 2024, these flexibilities are vital for the continued viability of telehealth, particularly benefiting small practices and those in rural or underserved areas.

Another key development is the anticipated update to remote prescribing rules for controlled substances. The decisions made will crucially balance the need for accessible care with the regulation of controlled substances, impacting how telehealth can be used for medication prescribing.

As 2024 unfolds, the healthcare community faces the challenge of navigating these legislative and policy changes to maximize the benefits of telehealth in patient care and access.

Budget Battles: Critical Healthcare Advocacy Amid Congressional Challenges

The intense budget battles in Congress, underscored by proposed cuts in the House L-HHS Appropriations Bill (H.R. 5894), are central to healthcare advocacy. These cuts, amounting to $767 million, pose a significant threat to essential HIV/AIDS programs, risking the reversal of years of progress in treatment and care. These programs are not just healthcare initiatives; they are vital lifelines providing necessary medications and support to individuals living with HIV.

The Coalition on Human Needs has expressed grave concerns about potential severe cuts to non-defense discretionary appropriations (NDD) for fiscal year 2024, which could drastically impact a range of vital services. In their sign-on letter to Congressional leaders, they warn that these cuts, potentially up to 9% according to the Center on Budget and Policy Priorities, would significantly harm programs essential for public health, education, environmental protection, and more, affecting diverse communities across America. The Coalition advocates for completing the FY24 appropriations process with a bipartisan approach, emphasizing the need to protect these crucial investments that support the nation's most vulnerable populations and uphold the commitment to public health and welfare.

Any major legislative changes will be at the mercy of presidential election year politics, and the congressional balance of power will only make it harder. Issues like PBM reform, or 340B reform, and Telehealth expansion will probably receive a lot of attention via hearings and news clippings, but legislative action remains in doubt.

CANN Grows to Meet Need

When Bill Arnold died in 2021, and the governing Board for Community Access National Network (CANN) saw fit for me to lead the organization, I was fearful. The task ahead of me was enormous. But they assured me, their confidence was not placed merely out of an affection for my wit or work ethic. Rather there were some intangible aspects to my personality and willingness to learn, and directness that felt…familiar. In the two years since, our Board has changed dramatically, working to thread a careful path forward while also maintaining connections and necessary historical attachment. In that time, the task in front of me, as an extension of the Board is still enormous and remains deeply complex as the powers behind interests other than patients have taken on new targets, diversified their goals, and – in all frankness – played some rather unfortunate semantics games in legalese to avoid accountability. It’s in that space CANN aggressively pursued observation, study, and engagement in 2023. It is in that space which CANN will grow to meet the needs of the moment in 2024.

Our Mission

CANN’s mission has long been to “define, promote, and improve access to health care services and supports for people living with HIV/AIDS and/or viral hepatitis through advocacy, education, and networking.” The “how” behind this work is very customized to our audience of the moment, working to understand the straight-forward interests of that audience, their goals, and the honest drive behind their work, be they federal or state regulators, industry partners, advocates representing patients with other health conditions, or state-based community coalitions already deeply engaged on issues affecting HIV and Hepatitis C. This often looks like quiet meetings focused on problem solving across expertise or long text conversations that result in shorter or longer phone calls. It often includes asking about someone’s family and sharing about our own experiences. We force a certain amount of buy-in through vulnerability and looking for where we can align while also holding strong boundaries as to what is and is not acceptable in moving forward the quality of life and timely, easy access to care for patients. In this we build extensive networking opportunities across the country. 2023 saw this focus shift to include state-based work among our extensive federal work.

2024 will see more focus on state-based activities and networks. The reality is, very little is happening with great speed on the federal level and lawsuits from well-financed interests will continue to make the trek slow, particularly with regard to 340B reform and actualizing the patient protections afforded under the Affordable Care Act. And that reality is one few national or federally based organizations are prepared for. However, CANN shared years ago with our funding partners that we felt this shift was coming and quicker than many could adequately appreciate. Our partners found value in this assessment and our readiness to grow in this direction and have since made investments to see this avenue of advocacy grow to the needs of the moment. Here’s the other truth, investing state-based advocacy can and will have federal level impacts; they will be slower but more secure than the alternately quick and sluggish pace of the federal space.

Our Team

CANN’s core team saw the addition of our regular blogger, Travis Manint, and new consultant, Ranier Simons. The quality of work these two people put into this organization is nothing short of inspired and I am immensely pleased that they’ll be joining us again in 2024.

As CANN looks toward the new year (and the years to come), we will continue to seek out people affected by HIV and Hepatitis C, patients, caregivers, loved ones, who wish to work in this space. CANN has always prided itself as “the community’s policy shop”, meaning in order for us to most closely fulfill that ideal, we must hire from community. We’ll be keeping our eyes out for those spirits driven to create change, defend progress, and step forward in defense of putting patients first, regardless formal educational background.

Policy Issues

In addition to maintaining our traditional programming, in no particular order, the policy issues we’ll be leaning into in 2024, include (but certainly aren’t limited to these because who knows what weirdness is going to come with the election):

-        340B Reform

-        Prescription Drug Affordability Boards

-        Federal funding of HIV programs (appropriations and policies)

-        Any advancement of the Biden Administration’s National Hepatitis C Elimination Program

-        State health department staffing levels

-        Changes in Medicaid programs in Southern States

-        Impacts of the Inflation Reduction Act in terms of access

-        Hospital, provider, and pharmacy consolidation

-        Medical debt

We’ll also be investing in developing the community conversation around “innovation”. I’ve long argued “nobody cares about innovation” when discussing the issue with our industry partners. “Innovation” has always been… “their” issue, while patients struggle to access the medications and appropriate care we already need as opposed to issues we haven’t yet developed. But that’s part of the problem in how patient communities generally think about “innovation”.

Last year, a dear friend called me after receiving their first long-acting injectable dose of antiretroviral medication – they have lived for more than a decade with HIV and ARVs aren’t “new” for them. A single tablet meant less stress than a multi-pill regimen but what was left was still a personal sense of hassle with every dose which really masked shame. So it was on that call, the day after when they didn’t need to take a pill any longer that they cried at the sense of relief, the near instantaneous quality of life improvement.

Time and again in 2023, I heard Coloradans living with cystic fibrosis talk about how life changing Trikafta was as a therapy. Imagine, empathize with being bed ridden or fearful of leaving home, awaiting news you need a lung transplant or biding your time because you know it’s coming, and one therapy change later, getting married, planning on having kids, holding down a job you absolutely love – even on the hard days. Things you might never have thought of as attainable before and suddenly…you can.

Think about having a blood clot break and scatter and the medication used to treat pulmonary embolisms historically required extremely careful balancing, near daily lab draws in the first month and a sheer prayer on not bleeding out. Who keeps a job while surviving that? Well…Eliquis changed that story for thousands and thousands of people in this country alone.

Those changes matter. Those changes are patient stories.

It’s time we own them.

The hard truth is innovation is being threatened. It is the height of privilege to demand the newest, greatest, and most effective medications in the world and to want them for free. There is a lack of reality in assuming some other country will just…step up. How’s that going for PEPFAR?

Did you gasp a bit? I hope you did. Because I did when that frame dawned on me. It was the middle of the night and I was suddenly very, very awake.

There is a cost to being first in line. That cost is one we pay to ensure the rest of the world also has these medications. And it is a privilege to be able to bear that cost in a way that allows us to lead and care for our own and indeed we do. Each of the medications mentioned above can be accessed for as low as $10 per month or at no cost at all to patients in need in the United States, but pharmacies are not required to check for these tools before asking a patient for a $600 co-pay. They should be. Payers are not required to apply the fullness of that benefit directly to patients, but they should be. Providers aren’t required to inform their patients about these tools when prescribing a medication, rather most typically they merely tell a pharmacy to substitute with a generic (if one is available) that might not be as effective, but they should be.

We will be exploring these conversations with our shared communities and stakeholders.

Looking Forward

CANN is on a path of growth because ultimately as need grows, so does the work to address those needs.

We look forward to serving you, our community, this year and in the years to come.

Payers Seek to Expand Telehealth, in Libraries

In Louisiana's public libraries, a significant transformation is taking place. Amidst the traditional setting of books and quiet study areas, telehealth booths are emerging as highly accessible resources for health and wellness. These innovative installations, described by the State Library of Louisiana as looking like “futuristic phone booths,” are not merely modern fixtures; they represent an essential expansion of healthcare access, particularly benefiting those in low income and rural areas, and people experiencing homelessness.

Yet, this progress faces challenges from the current culture war, notably the attacks on LGBTQIA+ communities and the removal of related literature and displays. Libraries, long-standing bastions of knowledge and inclusivity, are now at the center of ideological disputes, potentially impacting the very access they aim to provide.

The Culture War's Impact on Library Access

Recent reports from Vice, Book Riot, and AP News highlight a concerning trend: libraries are increasingly becoming ideological battlegrounds. In Louisiana, actions such as the banning of LGBTQIA+ themed books and the removal of pride-related displays have created an environment of fear and exclusion.

The politicization of libraries could deter potential partners and funders, hindering the expansion of healthcare services. Insurance companies, crucial stakeholders in the telehealth initiative, may view libraries as contentious spaces and reconsider their support. This could significantly impact the availability and expansion of telehealth services, particularly to marginalized communities who stand to benefit the most. The culture war's escalation within these traditionally neutral and inclusive spaces poses a real threat to the continued provision and growth of essential health services in libraries.

Despite these hurdles, Louisiana’s telehealth initiative, supported by the Blue Cross and Blue Shield of Louisiana Foundation, demonstrates resilience. Telehealth booths in libraries like West Baton Rouge provide private spaces for virtual healthcare consultations, essential for those with limited access to healthcare or who are afraid of stigmatizing interactions at traditional points of service.

Of the most...interesting aspects of this partnership includes Louisiana’s incoming Governor, Jeff Landry, joining the board of directors of Blue Cross Shield of Louisiana. Landry has been a vocal critic of libraries running up to his gubernatorial campaign, though his tone has since softened some. By, “interesting”, we mean uniquely “Louisiana weird”.

The Role of Insurance Payers in Library Telehealth Initiatives

As telehealth services expand the role of insurance payers becomes pivotal. Their involvement is not just about funding; it's about influencing the broader narrative to support public health initiatives in nontraditional spaces like libraries. Amidst the escalating culture war, their decision to back libraries can be a powerful statement in favor of inclusivity and access to healthcare. By supporting telehealth in libraries, they can help ensure that these spaces remain open, welcoming, and free from the divisive impacts of cultural conflicts.

The integration of telehealth services into public libraries represents a significant leap forward in making healthcare more accessible and equitable. It's essential for insurance payers and other key stakeholders to recognize the role libraries and other nontraditional spaces play in bridging healthcare gaps. Their support can help counteract the negative impacts of the culture war, ensuring that libraries continue to serve as welcoming hubs of health and knowledge for all community members.

In this challenging landscape, the support of insurance payers and stakeholders is more than just a financial commitment; it's a commitment to upholding the principles of equity and access in healthcare. Their involvement can help steer the conversation away from divisive politics and towards a focus on the health and well-being of entire communities, no matter their minority status. As we navigate these complex issues, it's crucial to keep libraries as inclusive and supportive environments, where everyone has access to the health services they need, free from the constraints of political discord.

Upholding Our Ethical, Moral, and Bipartisan Commitment to HIV/AIDS

"Where your treasure is, there your heart will be also."

These words from Jesus found in Matthew 6:21 resonate profoundly as we examine the current legislative actions on HIV/AIDS funding in the U.S. Congress. It is hard to imagine forty years into the epidemic that we’d be witnessing a systemic attack on numerous HIV-related programs, especially ones with proven track records of success. The House L-HHS Appropriations Bill (H.R. 5894), proposing a staggering $767 million in cuts to domestic HIV programs, starkly contradicts the values of compassion and faith professed by certain lawmakers. These cuts, detailed by the AIDS Budget and Appropriations Coalition (ABAC), threaten to dismantle decades of public health progress, disproportionately impacting marginalized communities, minorities, and the LGBTQIA+ community. The appropriations bill is only the tip of the iceberg.

The irony of these legislative actions is both profound and deeply troubling. Lawmakers, often vocal about their 'pro-life' stance, are endorsing policies that will cause significant harm to millions of Americans dependent on HIV services. This bill represents more than just fiscal adjustments; it's a direct attack on the services and supports afforded to people living with HIV (PLWH), reflecting a worldview that stigmatizes and punishes rather than supports and heals. This approach starkly betrays the bipartisan legacy of the HIV/AIDS fight, which brought together the ideological opposites of the late Senators Orrin Hatch (R-UT) and Edward Kennedy (D-MA).

The bill's proposed eliminations include funding for the bipartisan Trump-era Ending the HIV Epidemic Initiative, the Ryan White HIV/AIDS Program, and the Community Health Centers Program. Alarmingly, it suggests completely eliminating Part F of the Ryan White HIV/AIDS Program (RWHAP), which supports critical components like Dental Programs and AIDS Education and Training Centers. Additionally, the bill proposes a 53% cut in the Minority HIV/AIDS Fund and the total elimination of Minority AIDS Initiative funding within the Substance Abuse and Mental Health Services Administration.

But the attack isn’t exclusive to domestic programs combating HIV/AIDS.

The stalemate over the reauthorization of the U.S. President's Emergency Plan for AIDS Relief (PEPFAR), as highlighted in a recent POLITICO article, further exemplifies the moral failure of the Freedom Caucus – which is driving most of the vitroil behind these proposed cuts. Disputes over abortion and a blatantly bigoted reluctance to aid Africa have jeopardized the most successful global health initiatives of our time.

“I’m disappointed,” Rep. Michael McCaul (R-Texas) told POLITICO. “Honestly, I was looking forward to marking up a five-year reauthorization, and now I’m in this abortion debate.” Additionally, he said, “a lot of the Freedom Caucus guys would not want to give aid to Africa.”

Jen Laws (he/him/his), President & CEO of the Community Access National Network (CANN), poignantly captures this duplicity in a tweet: “HIV is a bipartisan issue and always has been. May those who wish to insert their culture war politics onto this historical space enjoy their moral rot for as long as the spotlight lasts because the sense of power certainly won't.”

We stand at a critical crossroads, not merely facing a policy challenge but a profound moral crisis. The battle against HIV/AIDS reflects our societal values of empathy, compassion, and collective responsibility. The proposed cuts and the deadlock over PEPFAR reauthorization challenge the very foundations of equity and justice, calling for a decisive response to maintain the fragile progress made in HIV/AIDS care and prevention. These cuts are not distant policy changes; they are immediate threats to lives and well-being, demanding our urgent attention and action.

Critical Juncture

RWHAP and PEPFAR stand at a critical juncture, pivotal to the global and domestic response to HIV/AIDS. The Ryan White Program, a testament to America's commitment to combating HIV/AIDS, is under threat from the proposed House L-HHS Appropriations Bill (H.R. 5894), which includes significant funding cuts. Concurrently, PEPFAR, a global beacon in the fight against HIV/AIDS and the largest commitment by any nation to address a single disease, faces legislative hurdles that could impede its future effectiveness.

The Ryan White Program has been a cornerstone in achieving a 90% viral suppression rate among its clients, as reported by the Health Resources and Services Administration (HRSA). PEPFAR, on the other hand, has been instrumental in saving 25 million lives and supporting over 5 million infants born HIV-free, providing antiretroviral treatment to over 20 million people across 55 countries. This program has played a crucial role in significantly reducing new HIV infections worldwide.

The potential funding cuts under H.R. 5894 pose a severe risk to the Ryan White Program's continued success in the United States, especially in light of the 12% decline in new HIV infections from 2017 to 2021. The reauthorization stalemate of PEPFAR underscores the moral failure of certain lawmakers, who, despite their 'pro-life' claims, are obstructing a program that has been a lifeline for millions globally.

Comprehensive Strategy is Key

The achievements made over the last four decades in the fight against HIV/AIDS underline the necessity of a comprehensive strategy. The increase in PrEP prescriptions in the United States and the high rate of viral suppression achieved through treatment as prevention exemplify the effectiveness of a holistic approach, encompassing treatment, prevention, care, and support services. It is crucial that policymakers and the public recognize the importance of these programs and advocate for their continued support, ensuring the progress in combating HIV/AIDS is not only maintained but also advanced. Time is of the essence to embrace and implement a comprehensive HIV/AIDS strategy that goes beyond mere treatment to encompass prevention, care, and support.

Challenging Extremism and Fostering Advocacy

The battle against H.R. 5894 transcends mere policy disagreements. It represents a stand against a form of political extremism that poses a grave threat to marginalized populations, including people living with HIV/AIDS. These proposed cuts, in stark contrast to the proclaimed pro-life stance of the very lawmakers pushing them, unveil a troubling hypocrisy reminiscent of the words of Jesus in Matthew 23:27-28: "Woe to you, teachers of the law and Pharisees, you hypocrites! You are like whitewashed tombs, which look beautiful on the outside but on the inside are full of the bones of the dead and everything unclean."

Just as Jesus admonished the outwardly righteous but inwardly corrupt, these policies, under the guise of fiscal prudence, risk causing significant harm to the most vulnerable, particularly PLWH, minorities, and the LGBTQIA+ community. The stark contrast between the proclaimed values and the actual legislative actions of these lawmakers echoes the biblical warning against such duplicity. The time to stand against this political extremism is now. We cannot afford to be bystanders as these policies threaten to unravel decades of progress.

A Resounding Call to Action:

This critical juncture calls for a united, nonpartisan response from all who value public health, health equity, and human dignity. Health and human dignity are not political weapons to be wielded in service of talking points when lives hang in the balance. We urge individuals and organizations across the political spectrum to join the Southern AIDS Coalition in their efforts to push back against these cuts by signing their letter. Your voice and actions are crucial in shaping the future of HIV/AIDS policy and ensuring our continued progress towards Ending The Epidemic.

There are easy to use tools to contact your congressional representation in Congress. Not sure of your congressional district or who your member of the U.S. House of Representatives is? This service will assist you by matching your ZIP code to your congressional district, with links to your member's website and contact page. Or complete this online form to find your two U.S. Senators.

Now is the time to reaffirm our bipartisan commitment to fighting HIV/AIDS. This battle is not just about preserving past achievements; it is about resolutely advancing our collective efforts against HIV/AIDS. Your involvement is not just beneficial; it is essential. By standing together, regardless of political affiliation, we can overcome these challenges and continue our journey towards a world free from HIV/AIDS. Act now, for this fight is about life, justice, and human dignity. Your voice and action are indispensable in this crucial hour.

‘Remembering and Committing’ to Representation in Advocacy Leadership for World AIDS Day

This year, World AIDS Day celebrates its 35th anniversary under the banner of “Remember and Commit”. As someone who was born in the mid 1980s, I do not have the experience of remembering a world before HIV, though I did have the privilege of being deeply influenced by fierce HIV activists and People Living With HIV (PLWH) from the time I was very young. My first memories of HIV involve my beloved Auntie Michelle, who was an HIV program monitor from the late 80s through the 2010s. In crumbling pastels, she covered her entire driveway in sidewalk chalk to help explain her work and how systems of HIV care interacted on local and national levels. My eleven-year-old brain was fascinated as she illustrated how the strongest programs placed people who had lived experience at the center of leadership and program development… and also what happened when the voices of those people were ignored.

I don’t have memories of what the world was like before HIV, but I remember my Auntie and her best gay friends (who were the first gay adults I had ever met) walking my pre-teen self down Belmont Avenue in Chicago, sharing memories of where they had partied before the parties became eclipsed by the HIV epidemic. Nestled among those very venues, they also made a point to show me one of the first youth drop-in centers to offer HIV testing, counselling, and support groups in Chicago. They shared about how they had been involved in evolving similar programs to expand access to HIV care in hospitals and neighborhood health clinics throughout Cook County – always championing the ways that PLWH were steering the vision of what those services should look like.

As a young “sick kid” who was already too familiar with the power dynamics of not being heard in medical settings, I remember being in awe that impacted people could ever have power over how their healthcare was delivered, let alone be in positions of leadership to direct how it could be done. In being generous with their memories of a world before HIV, and of what they had helped to build after it, they fostered my sense of legacy in advocacy, and helped shape my dreams of what we might have the power to collectively build in the future.

With this kind of role-modeling, it is perhaps unsurprising that I would find myself both enamored and enraged in the world of healthcare advocacy and policy development as an adult. While it still feels like the field of HIV is more intentional than others in incorporating people with lived experience into leadership roles, there is still plenty of room to more meaningfully center PLWH in our advocacy movements and beyond. And one area we still frequently lag in is ensuring our representation and leadership evolves with the epidemic. Far too many boards and chief executives reflect a heavy white, cis, male experience. Far too often, if leadership has any reflection of diversity among PLWH, it’s very tokenizing. This is especially true for women and trans people.

On a smaller scale, it is now broadly expected (and sometimes legally required) for clinics and programs to house community advisory boards to help guide their practices. Unfortunately, it is less common for those boards to be adequately representative of the communities they serve, and even less common for those boards to have meaningful power in decision making or policy setting within their spheres.  What does accountability look like in our collective commitment to centering the voices of PLWH in our advocacy movements? In my experience, it is much easier for people who are not living with HIV to wax poetic about what that can look like, while refusing to cede, shift, or share power in meaningful ways.

From conversations with loved ones, colleagues, and elders who were engaged in early HIV activism, I am reminded that the PLWH at the forefront of the movement were not there because they had been “allowed” to be by people who were not living with HIV, but because they demanded that their voices be heard in all of the spaces in which their lives were discussed. The urgency that motivated their call to action may not look the same now as it did 35 years ago, but the commitment that they demanded from those in power remains the same.

On this World AIDS Day, may we all remember the voices, lives, and sacrifices that PLWH the world over have made to ensure that their voices are the ones propelling our movement. May we remember our commitment to not only hire, but to invest in PLWH and communities highly affected by HIV. May this stream of memory renew our commitments to empowering both new and seasoned leaders who are living with HIV to build a world where everyone can thrive, regardless of their status - and may we remember our individual power to advocate in our own back yards and reflect on how we can hold ourselves accountable to that charge as we move forward in this epidemic together.