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.
Degrees of Separation: Social & Spatial Networks of HIV & HCV
In 1929, Frigyes Karinthy posited a theory many of us might attribute to Kevin Bacon: everyone on the planet is but six degrees of separation (or less) from one another. Depending on how one would measure a connection, that metric is likely far less than it was in 1929. Beyond social media marketing, connecting these networks of friends and friend-of-friends has been pretty important to the concepts of “partner testing and notification” utilized by disease intervention specialists to disrupt chains of transmission in terms of STIs and HIV. What’s been less well understood is the geographic relationship between areas experiencing outbreaks or “clusters” or the specific venues in which transmission occurs – social-spatial networks.
A study performed in New Delhi sought to better understand the relationship between social circle and gathering venue among “hard to reach populations” homeless people and/or, particularly, people who inject drugs. Originating recruitment from within community, asking community to propel recruitment, and paying particular attention to the “mutuals” between otherwise unconnected participants, the researchers sought to better understand the relationship of “risk” of transmission not just in behavior or large geographic area but in specific places in which specific behaviors are part of the culture – the community standards, if you will - of that venue. Researchers found 65% of participants had HCV antibodies, of which 80% had an “active infection” and most were unaware of their HCV status. Similarly, of those participants living with HIV, 65% were directly connected with another participant living with HIV. Researchers did not specify these connections to be causative – those connected did not necessarily transmit either virus to one another. Further, researchers found partaking at the most popular venue was associated with a 50% greater likelihood of a participant having an HIV or HCV diagnosis. Even if a participant did not access the most popular venue, if they associated with someone who did, their likelihood for being diagnosed with HIV or HCV was 14% higher. And the more degrees of separation a participant had from someone who accessed the most popular venue, the less the likelihood of a diagnosis.
The researchers conducting the study were hoping to identify methods of understanding that would allow for effective interventions that reach beyond the individual level. Can group behavior be influenced beyond recruitment and toward changes? Can harm reduction strategies or housing programs find greater efficacy, a better stretch of our dollars, by better understanding where these networks exist and how they operate?
Or is this association merely a by-product of sharing certain characteristics society has deemed unworthy of care? Those social ills that drive disparities in health and poverty and addiction may also drive those experiencing these harms of bias and negligence to seek a social network that at least understand their struggles. To be a little less alone in these struggles.
As is the nature of most things, a better understanding of behavior doesn’t always lend itself to building positive interventions. The same ability to navigate networks in areas where people living with HIV are discriminated against and people who inject drugs can easily be criminalized, rather than connecting to care. With molecular surveillance generating the ire of HIV advocates over fear of this kind of detailed knowledge being used by law enforcement, advocates should also keep a keen eye on how networks may be weaponized as well.
Understanding the spatial relationship within a social network could be a powerful public health tool that shifts our focus from individual intervention to far more meaningful interventions, so long as we can keep the focus of this type of research and the information gathered from it squarely aimed at building up the “public” part of public health rather the continuing to push the responsibility of public health on individual behavior.