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Incarceration, Inequality, and Hepatitis C Treatment: The Story of Two Southern States Ashley Wennerstrom, Sean Manogue, Hannah Hardeo, William T. Robinson, David L. Thomas, Risha Irvin Journal of Health Care for the Poor and Underserved, Volume 34, Number 3, August 2023, pp. 1129-1135 (Article) Published by Johns Hopkins University Press For additional information about this article For content related to this article https://muse.jhu.edu/article/903067 https://muse.jhu.edu/related_content?type=article&id=903067
© Meharry Medical College Journal of Health Care for the Poor and Underserved 34 (2023): 1129–1135. Incarceration, Inequality, and Hepatitis C Treatment: The Story of Two Southern States Ashley Wennerstrom, PhD, MPH Sean Manogue, BS Hannah Hardeo William T. Robinson, PhD David L. Thomas, MD, MPH Risha Irvin, MD, MPH Abstract: Hepatitis C virus (HCV) infection causes liver-related morbidity/mortality and disproportionately affects people who are incarcerated and non-Hispanic Black populations, largely due to social and policy issues that contribute to poor health. With the advent of highly efficacious treatment, HCV is now curable. However, most states’ departments of corrections do not offer universal HCV testing or treatment. Two southern states—Tennessee and Louisiana—provide examples of divergent approaches to addressing HCV infection. While Tennessee has offered treatment on a limited basis, resulting in a class action lawsuit, the state of Louisiana recently adopted a new approach. In establishing the 2019 Hepatitis Elimination Plan, the state created a standard of care for HCV infection that included robust testing and treatment in state prison facilities while capping costs. Louisiana has demonstrated the feasibility of HCV testing and treatment programs within state prisons, an important step towards achieving health equity. Key words: Hepatitis C, incarceration, health equity, inequality, Louisiana, Tennessee. T he United States (U.S.) is the world leader in incarceration, with roughly two million people behind bars. 1 The enduring legacies of slavery and Jim Crow laws, unfair practices in policing, inadequate funding for public defense, and draconian sentencing laws have led to overrepresentation of people of color in the criminal legal system. 2 The social and policy issues associated with incarceration (e.g. structural racism, 3 poverty, 4 COMMENTARY ASHLEY WENNERSTROM is affiliated with the Department of Behavioral and Community Health Sciences, Louisiana State University Health Sciences Center and the Center for Healthcare Value and Equity; Community and Population Health, Department of Medicine, Louisiana State University Health Sciences Center, New Orleans, LA. SEAN MANOGUE , H ANNAH HARDEO , DAVID L. THOMAS , and RISHA IRVIN are affiliated with the Division of Infectious Diseases, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD. William T. Robinson is also affiliated with the Louisiana Department of Health, Office of Public Health, New Orleans, LA. Please address all correspondence to: Risha Irvin, Division of Infectious Diseases, Johns Hopkins University School of Medicine, 1830 E. Monument Street, 4th Floor Infectious Diseases, Baltimore, MD, 21205; Phone: 443-287-4843; Fax: 410-502-7029; Email: rirvin1@jhmi.edu.
1130 Incarceration, inequality, and HCV treatment the criminalization of substance use, 5 and mental illness 6 ) overlap with those that cause poor health, resulting in a population of incarcerated people with higher rates of a host of physical and mental health conditions than people residing in the community. 7 For example, an estimated 10.7% of people in custody 8 have hepatitis C virus (HCV) infec- tion compared with less than one percent of the general population. 9 Chronic HCV infection leads to cirrhosis of the liver and is a major cause of liver cancer. Moreover, HCV infection caused nearly 16,000 deaths in the U.S. in 2018 alone and led to substantial morbidity. 10 There are pronounced disparities in HCV morbidity and mortality, with higher rates among non-Hispanic Blacks than Hispanic, Asian/ Pacific Islanders, and White populations. 11 The intersecting issues of structural rac- ism, poverty, lack of access to health care, 12 and the criminalization of substance use 5 have undoubtedly played substantial roles in the concentration of HCV infection in the Black community, which is amplified by incarceration. It is also worth noting that some older HCV treatments have been less effective for the genotype most common among the Black population. 13 With the advent of highly efficacious direct acting antiviral (DAA) treatment, HCV is now curable. National HCV elimination goals include diagnosing 90% of people who have an HCV infection, treating 80% of the eligible population, reducing new HCV infections by 80%, and reducing HCV-related deaths by 65%. 14 Achieving these goals and reducing disparities in HCV morbidity and mortality will require that incarcerated people have access to testing and treatment, as the majority of people with untreated HCV infection in the U.S. rely on medical care delivered in prisons and jails. 15 How- ever, most state departments of corrections—where the rate of incarceration for Black people is roughly five times that of Whites 16 — do not offer universal HCV testing and treatment. 17 A 2016 study found that only 17 state departments of corrections offer regular opt-out testing. 17 As of 2018, it was estimated that just 5% of incarcerated people had received treatment, and if the status-quo remained, only 18% of the incarcerated population would be treated by 2030. 15 Two southern states—Tennessee and Louisiana—provide important examples of different approaches to addressing HCV for their incarcerated populations. In 2016, incarcerated people with HCV brought a class action lawsuit against the Tennessee Department of Corrections (TDOC) to address rationing of HCV care. Specifically, TDOC limited treatment to those with advanced fibrosis scores, an indicator of higher severity of liver damage. 18,19 This is notable as liver damage and advanced stage liver disease can be prevented with HCV treatment, and the standard of care guidelines recognize that everyone should be treated for HCV infection. 20 The plaintiffs alleged that TDOC’s prioritization system led to HCV treatment being widely withheld, which constituted “deliberate indifference” to a serious medical need, and thus a violation of their Eighth Amendment rights. 18,19 By the time the case was tried in July 2019, TDOC had issued new HCV guidelines and noted that all people could be considered for treatment. However, the prioritization plan remained in place, according to TDOC, due to limited resources. 19,21,22 Although just 450 of over 4,700 incarcerated people with HCV had been approved for treatment at the time of the trial, a district court found in favor of TDOC. The ruling noted that rationing of care was appropriate because of limited resources. 19 By the time the a federal appeals court upheld the ruling in
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1131 Wennerstrom, Manogue, Hardeo, Robinson, Thomas, and Irvin August 2020, just 1,450 people in TDOC custody had completed HCV treatment and 176 were taking medications. 23 The Supreme Court declined to hear an appeal on the case in April 2021, refusing to address whether departments of corrections should be allowed to ration HCV treatment. 22 Ultimately, a financial argument in direct conflict with health equity and adequate medical care prevailed. The Supreme Court’s stance is disappointing, given that constitutional law requires prisons to provide adequate medical and mental health care for people in their cus- tody and that such care must be equivalent to community-based services. 18,24 Medicaid guidelines for treatment provide a useful barometer for community-based services, as the vast majority of people in contact with the criminal legal system are eligible for the program after release. 25 As of 2022, 48 state Medicaid programs do not restrict DAA access to only those with advanced liver fibrosis which has been a large point of advo- cacy since DAAs emerged. 26 Liver damage can be irreversible, and TDOC’s decision to require it as a condition for DAA treatment is clearly unethical. Considering the racial disparities in HCV infection, incarceration rates, and sentencing, it is also racist. Tennessee is unlikely to be alone in using the high cost of DAA (TDOC cited $17,000 for a 12-week course of medication) 23 as justification for implementing treatment restrictions. However, research on various models of addressing HCV in prisons has demonstrated that testing, treating, and linking people to care upon release is cost- effective and would decrease cirrhosis cases by 54% and increase sustained virologic response by 23%. 27 In contrast, conducting targeted testing and treatment based on liver fibrosis would produce worse outcomes at a higher cost to a department of correc- tions. 27 Furthermore, roughly 95% of people in state prisons return to the community at some point. 28 A study of one state prison system revealed that among incarcerated people who knew they had HCV and did not receive treatment inside, only 9% were linked to care within six months of release. 29 An investment of state department of corrections funds in providing universal HCV treatment during incarceration would help avoid costly lawsuits and likely generate long-term savings in corrections and Medicaid budgets by preventing HCV sequelae among people who had never been provided with treatment or linked to care. Unfortunately, state administrators may not view budgets comprehensively and recognize the overall value of HCV testing and treatment savings, regardless of whether services are provided through Medicaid or a department of corrections. Louisiana, bearing the dubious distinction of being both the least healthy state in the nation and a world leader in incarceration, provides an unlikely but important example of how state agencies can collaborate to ensure appropriate HCV treatment within a department of corrections. 1,30 Louisiana, like Tennessee, previously limited uptake of DAA treatment by restricting HCV testing and treatment. In 2019, however, Louisiana launched the HCV Elimination Plan as a collaboration between the Louisiana Department of Health (LDH) and the Department of Public Safety and Corrections (DPSC), with the goal of diagnosing 90% of HCV cases statewide and treating 80% of those identified. 31 The plan relied on a modified subscription model for DAAs in which Medicaid and DPSC were incentivized with cheaper cost per treatment cycle as more individuals in their care were treated. This strategy was also linked to key public health implementation strategies including educating the public on the availability of cure and
1132 Incarceration, inequality, and HCV treatment mobilizing priority populations for screening, expanding HCV screening and expedited linkage to the HCV cure, strengthening HCV surveillance to link people previously diagnosed to treatment, expanding provider capacity to treat HCV, and implementing harm reduction and complementary treatment strategies. Through the plan, Louisiana created a standard of care for HCV infection that now includes HCV opt-out testing for all incarcerated people in the eight state prison facilities, entry and exit testing, and treatment regardless of fibrosis staging. Individuals found to have chronic HCV infection upon release from prison are now linked to HCV treatment in the community with providers trained by LDH to treat HCV infection. Although plan implementation was significantly affected by the COVID-19 pandemic, over 10,000 people who are incarcerated were tested for HCV infection from project initiation to December 2021. Among them, 1,433 were found to have chronic HCV infection. As of December 2021, 1,409 people had been prescribed treatment, and 1,320 had completed treatment within DPSC. Those not yet treated were either in the process of starting treatment, declined care, or were released prior to beginning treatment and were offered linkage to community-based care. While Louisiana’s innovative financing model has managed to improve access to adequate HCV care for some incarcerated people, its successes thus far lie exclusively within the state’s eight prison facilities. Nearly half of people in Louisiana state custody are housed in decentralized jails operated by local sheriffs. 32 Department of corrections leaders have no authority to dictate jail operations, so implementing universal testing and treatment will require substantial time, collaboration, and negotiation with local authorities. Mobilizing jail-based HCV testing and treatment programs will also be cumbersome due to the rapid turnover within facilities. However, addressing HCV requires a collaborative, coordinated system in which testing and treatment becomes the standard rather than the exception. A care continuum in which people can be tested in one system (jail) and then linked to care in the community or provided treatment within a state prison must become the norm. State-level administrators must also view savings resulting from treatment in one system as part of their overall understanding of funding, rather than perceiving prison health care financing and Medicaid spending as separate funding streams. In the U.S., if we allow health care to be rationed by incarceration status, a status linked to poverty, racism, and disparate sentencing laws, we will further entrench both health and social inequities. Health care for incarcerated people must mirror what is available in the community. The current paradigm in HCV care nationwide has clearly moved away from restrictions to DAA treatment based on fibrosis in recognition of HCV elimination goals focused on morbidity and mortality. We must do better by providing health care to all. References 1. Prison Policy Initiative. Louisiana profile. Northampton, MA: Prison Policy Initiative, 2022. Available at: https://prisonpolicy.org/profiles/LA.html. 2. Alexander M, West C. The New Jim Crow: mass incarceration in the age of color- blindness (10th ed.). New York, NY: The New Press, 2020. 3. Braveman PA, Arkin E, Proctor D, et al. Systemic and structural racism: definitions,
1133 Wennerstrom, Manogue, Hardeo, Robinson, Thomas, and Irvin examples, health damages, and approaches to dismantling. Health Aff (Millwood). 2022 Feb;41(2):171–8. https://doi.org/10.1377/hlthaff.2021.01394 PMid:35130057 4. Reyes JV, Myles RL, Luo Q, et al. Sociodemographic and clinical characteristics asso- ciated with recent incarceration among people with HIV, United States, 2015–2017. Public Health Rep. 2022 Jul 16:333549221106646. Epub ahead of print. https://doi.org/10.1177/00333549221106646 PMid:35848105 5. Cohen A, Vakharia SP, Netherland J, et al. How the war on drugs impacts social deter- minants of health beyond the criminal legal system. Ann Med. 2022 Dec;54(1):2024– 38. https://doi.org/10.1080/07853890.2022.2100926 PMid:35852299 PMCid:PMC9302017 6. Vinson SY, Dennis AL. Systemic, racial justice-informed solutions to shift “care” from the criminal legal system to the mental health care system. Psychiatr Serv. 2021 Dec 1;72(12):1428–33. Epub 2021 May 12. https://doi.org/10.1176/appi.ps.202000735 PMid:33979203 7. Acker J, Braveman P, Arkin E, et al. Mass incarceration threatens health equity in America. Princeton, NJ: Robert Wood Johnson Foundation, 2018. Available at: https:// www.rwjf.org/en/library/research/2019/01/mass-incarceration-threatens-health -equity-in-america.html 8. Hofmeister MG, Rosenthal EM, Barker LK, et al. Estimating prevalence of hepatitis C virus infection in the United States, 2013–2016. Hepatology. 2018;69(3):1020–31. https://doi.org/10.1002/hep.30297 PMid:30398671 PMCid:PMC6719781 9. Zou B, Yeo YH, Le MH, et al. Prevalence of viremic hepatitis C virus infection by age, race/ethnicity, and birthplace and disease awareness among viremic persons in the United States, 1999–2016. J Infect Dis. 2020 Jan 14;221(3):408–18. https://doi.org/10.1093/infdis/jiz479 PMid:31560391 10. Centers for Disease Control and Prevention (CDC). Hepatitis C surveillance in the United States. Atlanta, GA: CDC, 2018. Available at: www.cdc.gov/hepatitis /statistics/2018surveillance/HepC.htm#Table3.6. 11. Centers for Disease Control and Prevention (CDC). What is hepatitis C—FAQ. Atlanta, GA: CDC, 2020. Available at: https://www.cdc.gov/hepatitis/hcv/cfaq.htm#overview. 12. Dickman SL, Gaffney A, McGregor A, et al. Trends in health care use among Black and White persons in the US, 1963–2019. JAMA Netw Open. 2022 Jun 1;5(6):e2217383. https://doi.org/10.1001/jamanetworkopen.2022.17383 PMid:35699954 PMCid:PMC9198752 13. Gordon SC, Trudeau S, Li J, et al. Race, age, and geography impact hepatitis C geno- type distribution in the United States. J Clin Gastroenterol. 2019 Jan 1;53(1):40–50. https://doi.org/10.1097/MCG.0000000000000872 PMid:28737649 PMCid:PMC5776051 14. Department of Health and Human Services. Viral hepatitis national strategic plan for the United States: a roadmap to elimination 2021–2025. Washington, DC: Depart- ment of Health and Human Services, 2021. Available at: https://www.hhs.gov/sites /default/files/Viral-Hepatitis-National-Strategic-Plan-2021-2025.pdf. 15. Chhatwal J, Chen Q, Bethea ED, et al. The impact of direct-acting anti-virals on the
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1134 Incarceration, inequality, and HCV treatment hepatitis C care cascade: identifying progress and gaps towards hepatitis C elimina- tion in the United States. Aliment Pharmacol Ther. 2019 Jul;50(1):66–74. https://doi.org/10.1111/apt.15291 PMid:31115920 16. The Sentencing Project. Prison population over time. Washington, DC: The Sentenc- ing Project, 2021. Available at: https://sentencingproject.org/criminal-justice-facts/. 17. Beckman AL, Bilinski A, Boyko R, et al. New hepatitis C drugs are very costly and unavailable to many state prisoners. Health Affairs. 2016 Oct;35(10):1893–901. https://doi.org/10.1377/hlthaff.2016.0296 PMid:27702964 18. Graham v. Parker. 2016. 19. Atkins v. Parker. 2019. 20. American Association for the Study of Liver Diseases (AASLD), Infectious Disease Society of America (IDSA). Recommendations for testing, managing, and treating hepatitis C. 2022 [website]. Available at: https://www.hcvguidelines.org/. 21. McGowan E. Atkins v. Parker: maximizing treatments in a “cruel world” of limited resources or minimizing constitutional rights. J Health Care L & Pol’y. 2022;25(2). Available at: https://digitalcommons.law.umaryland.edu/jhclp/vol25/iss2/6. 22. Associated Press. Supreme Court won’t hear Tennessee prisoners’ hepatitis C case. Nashville, TN: The Tennessean, 2021. Available at: https://tennessean.com/story/news /health/2021/04/19/supreme-court-wont-hear-tennessee-prisoners-hepatitis-c -case/7293558002/. 23. Straube T. Supreme Court won’t hear case of prisoners with hepatitis C. Hep. 2021. Available at: https://www.hepmag.com/article/supreme-court-hear-tennessee-case -prisoners-hepatitis-c#:~:text=This%20means%20that%20Tennessee%20can,with%20 the%20life%2Dthreatening%20virus. 24. Estelle v. Gamble (United States Supreme Court 1976). 25. Howard J, Solan M, Neptune J, et al. The importance of Medicaid coverage for criminal justice involved individuals reentering their communities. Washington, DC: Depart- ment of Health and Human Services, 2016. 26. Center for Health Law and Policy Innovation. Hepatitis C: the state of Medicaid access. Cambridge, MA: Center for Health Law and Policy Innovation, Harvard Law School, 2022. Available at: https://stateofhepc.org/wp-content/uploads/2022/01 /HCV_State-of-Medicaid-Access_Jan-2022_v2.pdf. 27. Assoumou SA, Tasillo A, Vellozzi C, et al. Cost-effectiveness and budgetary impact of hepatitis C virus testing, treatment, and linkage to care in US prisons. Clin Infect Dis. 2020 Mar 17;70(7):1388–96. https://doi.org/10.1093/cid/ciz383 PMid:31095676 PMCid:PMC7318776 28. Hughes T, Wilson DJ, BJS Statisticians. Reentry trends in the United States. Wash- ington, DC: Bureau of Justice Statistics, 2004. Available at: https://bjs.ojp.gov/content /pub/pdf/reentry.pdf. 29. Hochstatter KR, Stockman LJ, Holzmacher R, et al. The continuum of hepatitis C care for criminal justice involved adults in the DAA era: a retrospective cohort study demonstrating limited treatment uptake and inconsistent linkage to community-based care. Health Justice. 2017 Oct 30;5(1):10. https://doi.org/10.1186/s40352-017-0055-0 PMid:29086078 PMCid:PMC5662522
1135 Wennerstrom, Manogue, Hardeo, Robinson, Thomas, and Irvin 30. America’s Health Rankings. Health measures: Louisiana; 2021 annual report. Minne- tonka, MN: United Health Foundation, 2021. Available at: https://www.americas healthrankings.org/explore/annual/measure/Overall_a/state/LA. 31. Louisiana Department of Health. Louisiana hepatitis C elimination plan: 2019–2024. Baton Rouge, LA: Louisiana Department of Health, 2019. Available at: https://www .louisianahealthhub.org/wp-content/uploads/2021/03/Eliminate_Hepatitis_C_State _Plan.pdf. 32. Louisiana Department of Public Safety and Corrections dashboard. [website]. 2022. Available at: https://doc.louisiana.gov/demographic-dashboard/.