Payer-Denied PrEP Fails Black Women and Marginalized Communities
In the battle against HIV, Pre-exposure Prophylaxis (PrEP) stands out as a transformative defense, significantly lowering infection risks for those most vulnerable. However, this critical protection remains alarmingly out of reach for many, especially Black women, due to insurance payers' denial of coverage. This systemic neglect transcends a mere healthcare gap; it's a stark reflection of the health disparities that exist in the United States’ healthcare construct.
Recent findings from IDWeek 2023, led by Li Tao, MD, PhD, confirm: obstacles to PrEP, particularly insurance denials, are directly linked to rising HIV diagnoses. The research, spanning January 2019 to February 2023, exposes a distressing reality where people with rejected PrEP claims encountered a 95% higher likelihood of new HIV diagnoses compared to recipients of the medication.
Moreover, delays in PrEP dispensing due to these denials correlated with approximately a 20% increased HIV contraction risk, emphasizing the urgency of immediate PrEP access. This isn't just a postponement; it's a life-threatening denial disproportionately affecting marginalized communities. The study highlights the necessity of prompt PrEP access to prevent new HIV infections, especially for those with rejected or abandoned claims.
Further analysis showed the lowest HIV diagnoses among cisgender men with dispensed claims, contrasting with the highest rates among transgender women and men with abandoned claims. Individuals with sexually transmitted infections in the rejected or abandoned groups also faced elevated HIV diagnosis rates.
These insights "emphasize the dire need to eliminate PrEP access barriers to halt HIV transmission," the researchers concluded.
Empowering People: The Psychological Benefits of PrEP
PrEP's impact extends beyond physical health, offering significant psychological relief. A recent study in Pharmacy Times illustrated that PrEP usage enhances the confidence of people in having safer sex, reducing HIV transmission anxiety. This security is crucial, especially for communities burdened by the constant dread of HIV. It represents not just a medical breakthrough but an empowerment tool, allowing people to regain control over their sexual health without looming HIV fears.
The study, conducted over 96 weeks, encompassed participants from various backgrounds, including men who have sex with men, transgender women, and cisgender women. It found that those on PrEP experienced less anxiety and more comfort during sexual activities, confident in their reduced HIV risk. This mental health benefit was consistent across all groups, highlighting PrEP's universal advantage beyond its physical protective effect.
"PrEP is more than a medical solution; it's a source of hope and assurance for those at elevated risk of HIV," the researchers noted. They suggested that this confidence might encourage adherence to the medication, strengthening prevention efforts.
However, when such empowering medical solutions are restricted, it doesn't just withhold a health service; it robs people of the mental peace that accompanies protection. This added psychological strain compounds the systemic injustices that marginalized communities endure, deepening disparities.
Global Perspectives on HIV Prevention
While the U.S. struggles with healthcare inequities, other countries are advancing in the HIV fight. For example, Australia has made significant strides by implementing a comprehensive HIV prevention approach. A pioneering study in The Lancet HIV demonstrated that integrating HIV treatment-as-prevention (TasP) with PrEP significantly reduced new HIV cases among gay, bisexual, and other men who have sex with men (GBM).
This extensive research in New South Wales and Victoria, Australia's most populous states, indicated a substantial rise in the population prevalence of viral suppression, accompanied by a corresponding decline in HIV incidence. The findings advocate for continuous investment in holistic HIV prevention strategies, suggesting that even slight enhancements in treatment and prevention access and adherence can drastically reduce new HIV cases.
However, Australia's success highlights a stark contrast in healthcare access and strategy in the U.S., especially impacting Black women and marginalized communities. The effectiveness of Australia's model stems from its inclusivity, guaranteeing extensive coverage and straightforward access to diagnostic and treatment services. This strategy encompasses not just broad PrEP availability but also a robust focus on TasP, ensuring a high treatment rate among those diagnosed with HIV, thereby lowering their viral load and transmission risk.
In contrast, the U.S. healthcare system's piecemeal strategy, characterized by payer denial for PrEP and other preventive measures, hampers these all-encompassing prevention methods. A Health Affairs study unveiled severe disparities in PrEP access and costs. In 2018, populations such as gay, bisexual, and same gender loving men (GBM), heterosexual women and men, and people who inject drugs encountered the most significant financial barriers. Insurance plays a crucial role in healthcare access, yet it's grossly inadequate regarding PrEP coverage. According to a 2022 study, numerous people encountered administrative barriers, including outright PrEP claim denials. These systemic shortcomings resulted in uncovered costs totaling an astonishing $102.4 million annually, a financial burden that individuals had to shoulder in 2018 alone.
These uncovered costs represent tangible hurdles, keeping potentially life-saving medication inaccessible for many at-risk individuals. The systemic obstacles that Black women face, as outlined in a KFF Health News report, emphasize the grave repercussions of this neglect. Economic challenges, healthcare exclusion, and biased marketing strategies limit PrEP access, leaving this community exposed and overlooked.
The current state demands an immediate reassessment of the U.S. HIV prevention strategy. It's not solely about PrEP accessibility; it's about a comprehensive approach that encompasses effective treatment for people living with HIV/AIDS (PLWHA). This strategy involves not just advocating for PrEP insurance coverage but also pushing for extensive healthcare reforms that guarantee all-encompassing coverage, including TasP methods.
Australia's success story provides clear evidence: with the proper dedication and strategic approach, we can substantially lower new HIV transmissions and work towards eradicating the HIV epidemic. However, this achievement requires a collective resolve to seek a healthcare system that serves everyone, not just a privileged minority.
It's time to hold payers and policymakers responsible, to shame them for their role in a system that continues racial and socioeconomic health disparities. Their inaction costs more than money; it costs lives. The U.S. must learn from global success stories and adopt an inclusive, comprehensive HIV prevention strategy that recognizes and caters to the unique needs of all communities, including Black women and other marginalized groups.
The Plight of Black Women
The situation becomes even more tragic when we consider Black women's struggles, especially those identifying as cisgender. Despite bearing a disproportionate burden of the HIV epidemic, Black women face numerous systemic barriers, from healthcare alienation and biased marketing to economic hardships, all limiting their PrEP access, as detailed in a KFF Health News report.
One personal story, that of Alexis Perkins as featured in a PBS NewsHour article, illustrates these challenges. Perkins, a 25-year-old nurse, encountered difficulties in obtaining PrEP despite her proactive health efforts. During her visit to her OB-GYN’s office, Perkins sought a prescription for PrEP but encountered several obstacles. The medical assistant who initially greeted her was not only unfamiliar with PrEP but was uncomfortable discussing it. Furthermore, her provider, though aware of PrEP, did not feel confident prescribing it due to a lack of sufficient knowledge about the medication. Her experience reflects a broader systemic problem where healthcare providers often lack PrEP knowledge or are reluctant to prescribe it, failing to meet Black women's health requirements. "It's not something that's being marketed to us," Perkins expressed in the article, indicating the absence of information directed at Black women.
These systemic barriers extend beyond mere neglect; they inflict direct harm. The research points out exclusionary marketing tactics, where PrEP promotional efforts frequently miss Black women, resulting in misunderstandings and unawareness about PrEP's relevance to their lives. This issue is aggravated by the gender disparity in FDA-approved PrEP medications' accessibility, with some treatments tested solely on male participants, restricting their use for women.
While manufacturers have begun addressing these disparities in marketing materials and clinical trial design for emerging therapies, stigma, radical judicial activism, and lack of strengthened or continued investment in public health all threaten our ability to meet our goals in Ending the HIV Epidemic.
Economic barriers, more common among Black communities, exacerbate these challenges, making consistent PrEP usage difficult. The necessity for regular medical appointments and HIV testing, along with high initiation costs and logistical hurdles, presents significant obstacles. As the PBS article elaborates, these economic and logistical barriers, particularly for those in poverty, are daunting and often insurmountable, barring Black women from the healthcare they deserve.
Addressing this healthcare inequality demands a comprehensive strategy. Economic and social empowerment, community-focused health campaigns, and policy and research initiatives are essential. Improving access to quality employment, healthcare, and stable housing can empower Black women to make informed health decisions. Customized health messaging and community dialogues, as well as policy and research efforts like those by the Centers for Disease Control and Prevention (CDC) and Gilead Sciences, are vital steps toward closing these gaps.
Alexis Perkins' story is not unique; it reflects the experiences of many individuals navigating a healthcare system that consistently fails them. As we face these harsh truths, we must acknowledge that this crisis goes beyond medicine; it's a moral issue. The barriers preventing access to PrEP for the most at-risk communities are not mere oversights; they are expressions of a societal hierarchy that deems certain lives less worthy.
This is more than a health disparity; it's a measure of our societal values. Will we maintain a system that actively undermines the health and futures of its most vulnerable? Or do we possess the collective bravery to demand change?
Change is achievable; it's been proven. Nations like Australia have adopted inclusive, forward-thinking, and compassionate public health policies, dramatically reducing HIV transmission and new diagnoses. Their methods show that with sufficient commitment, we can revolutionize healthcare delivery.
Reflecting on the stories of people like Alexis Perkins, let's contemplate our role in this narrative. Will we be passive observers in a system that discriminates and excludes, or will we become advocates, championing a future where healthcare is a right, not a privilege determined by socioeconomic status? The decision is ours, and it's one we must make now. Because with every moment we delay, every moment we choose inaction, we become silent co-conspirators in a system that tallies casualties instead of champions. In a country that boasts freedom and justice for all, how long will we allow these injustices to determine who gets to live, prosper, and contribute to our society?
Unveiling Disparities: OIG Report on HIV Care in Medicaid
A recent report by the U.S. Department of Health & Human Services’ (HHS) Office of Inspector General (OIG) unveiled a startling revelation: one in four Medicaid enrollees with HIV may not have received critical services in 2021. At a time when healthcare systems worldwide were grappling with the COVID-19 pandemic, these findings highlight the compounded struggles faced by People Living with HIV (PLWH) in accessing essential care.
Beyond safeguarding the health of PLWH, viral suppression plays a pivotal role in curbing HIV transmission, a critical metric in the public health effort to end HIV. In alignment with HHS guidelines, achieving consistent viral suppression necessitates three foundational elements: routine medical consultations, ongoing viral load assessments, and unwavering commitment to ART regimens.
Unveiling the Care Gaps
The OIG's analysis reveals pressing challenges within our system:
Out of the 265,493 Medicaid enrollees diagnosed with HIV, a startling 27% were missing evidence of receiving at least one of the pivotal services last year.
10% were missing evidence of medical visits, and 11% were missing evidence of an ART prescription, raising concerns around disease progression and higher incidence of AIDS diagnosis, increased risk of transmitting the virus, and developing antiviral resistance.
The most pronounced gap? Viral load tests. A staggering 23% of enrollees lacked evidence of even a single viral load test in 2021. This absence not only impedes clinicians from making informed decisions but also hampers our collective ability to monitor and respond to the evolving nature of the HIV epidemic.
Perhaps most concerning is the fact that more than 11,000 of these enrollees didn't have evidence of availing any of the three critical services. This is not just a statistic; it's a reflection of real individuals, facing amplified health risks due to system inadequacies.
Jen Laws, CANN's President and CEO, poignantly remarked, "Medicaid represents the greatest public program coverage of PLWH. It also represents the greatest public program coverage of people at risk of acquiring HIV. Medicaid compliance and efficacy is critical to Ending the HIV Epidemic and this report has identified gaps where states have failed to meet their obligations to Medicaid beneficiaries and where CMS has failed to ensure compliance. We must do better if we are going to reach our public health goals."
The report underscores stark disparities in care access between Medicaid-only and dual-eligible enrollees (those with both Medicaid and Medicare). Specifically, Medicaid-only enrollees were three times more likely to lack evidence of any of the three critical services compared to dual-eligible enrollees, with 6% of Medicaid-only enrollees missing out, as opposed to just 2% of the dual-eligible group. Such disparities might stem from various factors, including Medicare's higher fee-for-service rates and the observed long-standing adherence patterns among older adults who have had HIV for prolonged periods.
State-wide Disparities: A Complex Landscape
The disparities in HIV care access across states offer both a grim reality check and a clarion call for systemic reform. Drawing from the OIG report, certain states, notably Arizona, Arkansas, the District of Columbia, and Utah, have alarmingly high proportions of Medicaid-only enrollees without evidence of at least one of the three critical services. For instance, Utah stands out with a staggering 87% of such enrollees missing out on essential care. These aren't just numbers; they represent real individuals grappling with a system that's failing them.
Conversely, some states demonstrate better compliance and efficacy in delivering HIV care, which suggests potential models or strategies that could be emulated across the board. However, the stark variability across states points to the undeniable influence of state-specific policies, the quality of local HIV care infrastructures, and broader challenges associated with healthcare access.
State agencies clearly have much work ahead. These disparities not only indicate potential inefficiencies or gaps in policy implementation but also suggest a pressing need for introspection and reform at the state level. Coupled with challenges in the broader Medicaid system, there's a compelling case for a comprehensive overhaul.
The onus is on both state agencies and the Centers for Medicare & Medicaid Services (CMS) to rise to the occasion. The disparities, as evidenced in the report, necessitate a deep dive to understand the underlying causes. Is it a matter of policy misalignment, funding constraints, administrative challenges, or a combination thereof?
For instance, the significant variation in care access among dual-eligible enrollees, ranging from 9% to 53% across states, speaks volumes about the discrepancies in policy implementation and oversight. It's vital to pinpoint these issues, develop tailored interventions, and ensure that every Medicaid enrollee, irrespective of their state, receives the essential services they need.
The Pandemic's Shadow
The COVID-19 pandemic exerted immense pressure on healthcare systems, with profound implications for HIV care. The OIG report highlights the challenges faced by Medicaid enrollees with HIV during the COVID-19 pandemic. A significant finding from the report is the notable deficiency in viral load tests among these enrollees. This underscores the need for healthcare systems to effectively manage and prioritize essential services, even amidst broader healthcare crises. The report serves as a reminder of the importance of consistent and uninterrupted care for conditions like HIV, even when healthcare systems face external pressures.
Steering Towards a Brighter Future
Addressing the glaring disparities laid out in the OIG report goes beyond mere policy recalibration; it challenges our collective resolve to uphold equitable healthcare. In the shadow of the pandemic's aftermath, it's imperative that essential services for PLWH are not just nominally available but are genuinely accessible.
The OIG report's findings don't merely spotlight discrepancies; they highlight systemic lapses. States have fallen short in fulfilling their obligations to Medicaid beneficiaries, and the CMS has not adequately ensured compliance.
To translate this call to action into meaningful change, it's essential to:
Strengthen state-level accountability frameworks to ensure Medicaid obligations are met comprehensively, particularly among states utilizing Managed Care Organizations – ensuring those contracted for-profit insurance companies are meeting their contractual obligations to states. The tools for accountability already exist within these contracts, they merely must be used.
Bolster CMS oversight mechanisms, driving proactive interventions that hold states to account and rectify compliance lapses.
Engage in continuous dialogue with stakeholders, including healthcare providers and beneficiaries, to identify and remedy bottlenecks in care access.
The findings from the OIG report serve as a stark reminder of the work ahead. As Jen Laws aptly states, "We must do better." HIV advocates should consider assessing our engagement with their state Medicaid programs and look for opportunities to act, akin to our engagement Ryan White programs. With concerted efforts, policy reforms, and collective commitment, we can bridge the gaps and ensure comprehensive care for all PLWH.
Assessing Cultural Competency
In the ideal, the patient-provider relationship is smooth, easy, and full of trust. The imagery providers and hospitals often use is reflective of this ideal – smiling patients, providers with the warm but professional demeanor of a teacher speaking to a student, and well-lit surroundings. This is not the experience many of us can ever recall having, even when we do have a positive relationship with our providers. In the best of circumstances, our providers don’t always have as much time as we’d like to help explain something and, in the worst, we’re left feeling angry, talked down to, concerns dismissed, and so thoroughly frustrated, we don’t want to ever see a doctor again. These experiences shape the patient experience in similar ways to consumers approaching any other retail situation. The problem is the relationship between patient trust and engagement in care is far more consequential, often doesn’t allow for much choice, and even the smallest fracture in that trust can affect an individual patient for their entire lives – for communities, it can affect the health of generations.
Kaiser Health News recently covered the issue of assessing patient experiences and satisfaction and how issues of cultural competency are not being adequately measured to identify opportunities for improving patient experiences and even potentially tackling pervasive problems like implicit bias. Of particular note, author Rae Ellen Bichell pointed toward a Health Affairs study that evaluated clinician notes for coded language. The results of the study were remarkable with provider language using a negative frame toward Black patients at 2.5 times the rate white patients were described in a negative light. Digging into the nuances of how providers train to manipulate patient responses, how survey results published by the Centers for Medicare and Medicaid Services (CMS) only publish aggregate information rather delineated information which might identify an issue of disparate experiences, and how these surveys do not ask patients questions which would assess cultural competency, Bichell puts a fine point on the need to integrate cultural competency as a measure and tool of health equity. As Dr. Oni Blackstock pointed out earlier this year (and routinely does so in a fashion that providers everywhere should take note of), language matters and reflects how providers view their patients – necessarily reflecting how providers approach their patients’ needs.
These buzz words, “health disparities” and “cultural competency”, have been around for some time, picking up steam and attention as the Biden Administration set goals to address disparities further highlighted by the COVID-19 pandemic. Clinics and hospitals tend to offer “cultural competency” trainings, reviewing the needs of particular marginalized demographics. But these trainings tend to also be cursory, quick, and do not have a functional and effective tool to measure patient experiences. Lacking a complementary assessment tool, these trainings do little more than teach providers what slurs they cannot use when describing a patient, rather than ensuring patients are receiving the quality of care they deserve – the quality of care patients need in order to remain engaged in their own care.
Indeed, a common sentiment in assessing HIV and Hepatitis C programs, especially under the frame of stagnating metrics of success, is the notion that “these patients” are just harder to reach, keep in care. So much so that when reviewing various Ending the HIV Epidemic plans, there’s a very clear focus on testing and PrEP, with retention in care as a priority falling far behind despite scientific knowledge that undetectable equals untransmittable – successful engagement in care for people living with HIV is effective prevention. This frame necessarily puts the burden on patients to be engaged without acknowledging barriers to care and the very responsibility of providers (and their government funders) to assess what providers could do differently to earn the trust of patients.
As much noise been made of providers working to be more culturally competent in care, little has been done to measure that competency from the patient perspective. Lacking that data also leaves us blind as to identifying potential problems in provider approaches. Advocates and providers would do well to consider that “patient-centered” care means the patient perspective and experiences is the most key indicator as to if a patient is actually centered in care. Successful provider-patient relationships are the key to tackling medical mistrust and a critical tool in dismantling the systems that further health disparities.
Highlights from the Viral Hepatitis National Strategic Plan
On January 7th, the Department of Health and Human Services announced publication of an updated plan to eliminate viral hepatitis in the United States. This “roadmap” coincides with HHS’s release of the first Sexual Transmitted Infections (STI) National Strategic Plan on December 18th, 2020, and an update to the HIV National Strategic Plan on January 15th, 2021.
Notably, these documents reference one another and specifically call for integrated efforts to tackle these syndemics across stakeholder groups, specifically including substance use-disorder as part of a “holistic” cohort. Additionally, each contains a near identical vision statement:
- The United States will be a place where new viral hepatitis infections are prevented, every person knows their status, and every person with viral hepatitis has high-quality health care and treatment and lives free from stigma and discrimination.
- The United States will be a place where new HIV infections are prevented, every person knows their status, and every person with HIV has high-quality care and treatment and lives free from stigma and discrimination.
- The United States will be a place where sexually transmitted infections are prevented and where every person has high-quality STI prevention, care, and treatment while living free from stigma and discrimination.
All three vision statements end with the following: This vision includes all people, regardless of age, sex, gender identity, sexual orientation, race, ethnicity, religion, disability, geographic location, or socioeconomic circumstance.
Each plan addresses a limited but indefinite list of social determinants of health such as socio-economic burdens impeding access to care, including racism, intimate partner violence (IPV), and stigma and acknowledges discrimination against sexual and gender minorities (SGM). COVID-19 is mentioned repeatedly as underscoring and providing a highlight to the United States’ excessive health disparities, giving a nod to the unfortunate…”opportunity” the pandemic has provided health care advocates working with or as a part of these highly affected, highly marginalized communities. “The pandemic has exacerbated existing challenges in the nation’s public health care system, further exposing decades, if not centuries, of health inequities and its impact on social determinants of health.” Plans also acknowledge personnel and resources from programs addressing STIs, viral hepatitis, and HIV have been heavily redirected toward efforts to address COVID-19.
All plans call for better data sharing across providers and reporting agencies and an increase in surveillance activities, with an emphasis on local-level efforts to rely on local data, rather than national-level trends. Each plan also calls for expanded testing, interventions, linkage to care, provider and community education, and access to treatment, including incarcerated populations. The Viral Hepatitis National Strategic Plan (VHNSP) described “poor quality and a paucity of data” as clear impediment to meeting the goals of the plan. Sparring no stakeholder with access, the plan highlights a need for data sharing among correctional programs, health insurers, public and private health systems, mental and behavioral health, public health entities, and more.
The VHNSP also acknowledges opportunities to take lessons from the fight against HIV and the need to integrate “treatment as prevention” as a powerful tool in combating new HBV and HCV infections.
The Viral Hepatitis Strategy National Plans notes the following key indicators:
On track for 2020 targets:
HBV deaths
HCV deaths
HCV deaths among Black People
Trending in the right direction:
HBV vaccine birth dose (87% for people born between 2015-2016 by 13 months, WHO recommends 90% by 13 months)
HBV vaccine among health care personnel
HBV-related deaths among Black people
HBV-related deaths among people over the age of 45
Not on track:
New HBV infections
New HCV infections
New HBV infections among people 30-49 years of age
HBV-related deaths among Asian Americans and Pacific Islanders
New HCV infections among people of 20-39 years of age
New HCV infections among American Indians and Alaska Natives
The plan recognizes an 71% increase in HCV infections in reporting years 2014-2018 and points toward a strong data correlation between these new infections and the opioid epidemic, based on local area reporting data. Care related challenges include lack of personal status knowledge, perinatal transmission, and cost of curative treatment.
The plan states ideal engagement in various activities across an astoundingly broad scope of stakeholders including faith-based organizations for outreach and education, stigma and anti-bias training among all client-facing personnel, the opportunity to engage comprehensive syringe services programs as an outlet to provide HCV medication and more traditional services like referral for opioid-use disorder, educating providers and employers about federal protections for people with viral hepatitis, increasing awareness through school education programs – specifically culturally sensitive and age-appropriate sex education programs.
From issues of criminalization laws to lack of cohesive data collection, overall, the plan is very welcomed, comprehensive approach toward addressing viral hepatitis. With the STI and HIV plans mirroring very closely.
While the plans call stakeholders to address economic barriers to care and other social determinants of health, specifics are lacking. Stakeholders may wish to consider some of the priorities in the Biden administration’s public health approach including hiring from affected communities (including reducing or allowing alternative education requirements like live-experience or consideration of on-the-job training opportunities). These lofty goals may also require regulatory changes in order to implement and realize them fully (i.e. mechanisms incentivizing correctional facilities and the Veterans Administration to share data with local or state health departments and establish linkage to care programs). Private funders would be wise to take advantage of this opportunity and fund innovative, comprehensive pilot or demonstration projects. Advocates would be wise to leverage these documents when seeking state-level regulatory changes and advocating for federal funding and program design.