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One death too many: Fixing the last mile of hepatitis C care

Last Updated

May 04, 2026

In this installment of the Health Equity Series, Mariana Gomez de la Espriella, MD, reflects on hepatitis C care in rural Appalachia, barriers to treatment, insights from qualitative work with patients and providers, and care models to improve linkage to cure this Hepatitis Awareness Month.

My patient, in her early 30s, lay in a hospital bed dying from complications of advanced cirrhosis caused by hepatitis C. She had been diagnosed years earlier but never made it to treatment, her life shaped by the challenges of substance use disorder and the barriers that still stand between diagnosis and cure.

After rounds, I wrote a line in my notebook: “Another patient. Another life lost too early. A cure existed, but we reached her too late.” That sentence has stayed with me.

We have curative therapies for hepatitis C that are safe, simple and highly effective. Direct-acting antivirals cure more than 95% of patients. (1) In theory, deaths like hers should be rare. And yet they still happen.

The gap between diagnosis and cure

Diagnosing hepatitis C is only the first step. The real challenge is ensuring that patients can access treatment. In Appalachian Virginia, where I practice as an infectious diseases physician, that challenge is evident.

To better understand why patients diagnosed with hepatitis C were not reaching treatment in our health system, our team conducted a qualitative study consisting of in-depth interviews with patients living with hepatitis C and substance use disorders, as well as with clinicians caring for them across our region. (2) Patients discussed the heavy stigma of hepatitis C. Many were not surprised by the diagnosis given their history of injection drug use, but they feared judgment from family, the community and health care providers. Some worried about transmitting the infection. Providers highlighted systemic barriers like complex referrals, long waits for specialists and administrative red tape that delay treatment.

Yet the most consistent barriers were not medical at all. Patients and clinicians highlighted transportation issues, unstable housing and no phone access as barriers to attending appointments.

Clinicians noted that patients are most at risk of being lost during the hospital-to-outpatient transition. As one provider noted during the interviews, the period after hospital discharge is often “the main step where patients fall through the cracks.”

These insights highlighted an important lesson: The system is failing to meet patients where they are. Addressing this challenge requires rethinking how care is delivered, prioritizing access, patient navigation, and models designed around the reality of patients’ lives.

This gap between diagnosis and treatment reflects a broader challenge in hepatitis C care. Health equity in this area is not only a clinical issue; it is also shaped by the policies and systems that determine who can access treatment and how care is delivered.

Across the United States, clinicians, public health teams and community organizations are working toward the goal of hepatitis C elimination. Still, one of the greatest challenges remains bridging the gap between diagnosis and cure for the patients most affected by the disease.

Part of this challenge lies in the fragmentation of care across health systems. Patients with hepatitis C often move between emergency departments, hospitals, addiction treatment programs and primary care clinics, with no unified system to track whether they ultimately receive treatment. In the absence of coordinated data systems, the same patient may be tested multiple times in different settings while the critical step of linking them to treatment never occurs.

Fragmented care can lead both to duplication of services and, paradoxically, to patients receiving no treatment at all. Studies examining the hepatitis C care cascade have shown that a substantial proportion of patients diagnosed with hepatitis C are never successfully linked to treatment or cured. (3)

Building the path to hepatitis C elimination

Recognizing these challenges, our team began developing a different approach. We created a registry of patients diagnosed with hepatitis C but never treated, allowing care coordinators and patient navigators to reach out and help guide them through the steps needed to start therapy.

One of our key innovations has been integrating hepatitis C telemedicine consults into a mobile health unit serving rural Southwest Virginia, reducing geographic and logistical barriers to care.

We also expanded treatment capacity beyond traditional specialty clinics by developing a training program that empowers primary care providers to diagnose and treat hepatitis C, enabling patients to receive care closer to home from providers they already know and trust. (4) 

Our work has also highlighted another important opportunity for hepatitis C care: the hospital setting. For many patients facing instability or barriers to outpatient care, hospitalization may be one of the few moments when they are consistently engaged with the health system. Emerging evidence suggests that initiating hepatitis C treatment during hospitalization can improve treatment uptake and completion and help prevent patients from being lost during the transition to outpatient care, (5) a gap repeatedly identified by clinicians in our study. (2)

These experiences have reinforced a central lesson: hepatitis C elimination will not happen through medications alone. It will require health systems that prioritize access, patient navigation, and care models designed to ensure patients are not left behind.

I still think about that young woman whose death inspired a line in my notebook.

Every patient cured today represents not only a medical success but also a reminder of what is possible when barriers to care are removed.

As we observe Hepatitis Awareness Month, the promise of hepatitis C elimination is within reach. Achieving it will require ensuring fewer patients fall through the cracks and that no more lives are lost to a disease we already know how to cure.

Learn more about the Health Equity Series on Science Speaks and read other posts in the series.

References

  1. AASLD-IDSA. Recommendations for testing, managing, and treating hepatitis C. Accessed March 14, 2026.
  2. Konathapally M, Henrickson Parker S, Gomez de la Espriella M. Closing the Care Gap: Community-Based Strategies Linking Patients with HCV and Substance Use Disorder in Appalachia. Open Forum Infect Dis. 2026;13(Suppl 1):ofa695.2001.
  3. Wester C, Osinubi A, Kaufman HW, et al. Hepatitis C Virus Clearance Cascade — United States, 2013–2022. MMWR Morb Mortal Wkly Rep. 2023;72:716-720.
  4.  de la Espriella MG, Peterson C, Faulhaber JR, et al. Empowering healthcare providers in the Appalachian region to manage hepatitis C infection: A descriptive study. Open Forum Infect Dis. 2025;12(Suppl 1):ofae631.2353. 
  5. Denkins J, Babiarz J, Ham Y, et al. Hepatitis C Treatment Initiation During Hospitalization for People Who Use Drugs: A Narrative Review of the Literature. Open Forum Infect Dis. 202512(6):ofaf237. doi: 10.1093/ofid/ofaf237.

 

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