The rise of direct-acting antiviral medications over the past decade have resulted in cure rates above 95 percent for people living with chronic hepatitis C virus. But for the most vulnerable populations disproportionately impacted by HCV in the U.S.—i.e., incarcerated people and people who inject drugs—treatment remains dangerously elusive, according to a pair of articles published in the New England Journal of Medicine in August.
A System That Often Denies HCV Treatment Access to Those Most in Need
An estimated 17% of the U.S. prison population is living with hepatitis C (HCV), compared with 1% of the general population, yet only a small minority have received DAA treatment, contend Alexandra Daniels, a Stanford Law School student, and David Studdert, a professor of medicine and law at Stanford University, who co-authored one of the NEJM articles. People in prisons account for approximately one third of HCV cases in the U.S., they note.
“Because people flow in and out of jails and prisons, HCV prevalence in these institutions also affects prevalence in the community,” Daniels and Studdert write. “Treating the prison population would reduce transmission in the general population, especially if treatment programs are linked to efforts to prevent reinfection and ensure postrelease care.”
Why the lack of access to life-saving DAAs in the U.S.? For one, DAAs are prohibitively expensive. Two first-generation DAAs, sofosbuvir (Sovaldi) and ledipasvir/sofosbuvir (Harvoni), were initially priced at $94,500 and $84,000 per 12-week treatment course, respectively, although cheaper alternatives have since become available. Nonetheless, as a cost-saving measure, many prisons implemented prioritization protocols designed to limit DAA access to people with advanced HCV.
“Access in prisons and jails boils down to whether HCV is prioritized, the allocation to prison health budgets, and how each state’s Department of Corrections negotiates drug prices for the cure,” says Bryn Gay, Hepatitis C Virus Project Director at Treatment Action Group. “It's appalling that only 5% of people in prisons have been treated since the HCV cure became available.”
Injection drug users represent another marginalized group with higher rates of infection, accounting for 6.1 million cases of HCV worldwide and a considerable proportion of new infections. According to Gay, a number of U.S. states have restrictions that require people to not consume alcohol or substances for up to six months before they can start treatment, which further creates barriers to care for injection drug users and contributes to community spread. “There’s no medical reason for these restrictions or for delaying initiation on direct acting-antivirals for people who use and inject drugs,” says Gay.
The Life-Threatening Role of Stigma in HCV
While high costs represent a significant barrier to HCV prevention and treatment for incarcerated people and people who inject drugs, the burden of stigma and discrimination is an important, often underappreciated factor influencing access to care. According to a NEJM perspective article comparing HCV treatment access and uptake data in injection drug users across Australia, Canada, and the U.S., “the stigma and discrimination experienced by most people with HCV who inject drugs—including discrimination by clinicians—prevents access to high-quality health care.”
The article was penned by Gregory Dore, Ph.D., M.P.H., the head of Kirby Institute’s Viral Hepatitis Clinical Research Program at University of New South Wales-Sydney, and Stacey Trooskin, M.D., Ph.D., M.P.H., a clinical assistant professor of medicine at Perelman School of Medicine within the University of Pennsylvania and the director of viral hepatitis programs at Philadelphia FIGHT Community Health Centers.
Dore and Trooskin found that two key factors resulted in higher uptake of HCV medications among marginalized populations in Australia compared to the U.S.: 1.) a considerably lower cost per DAA treatment course and 2.) a lack of access restrictions based on stage of liver disease or ongoing drug or alcohol use. According to the authors, that higher uptake among people who inject drugs has more than halved the prevalence of HCV infection—from 51% in 2015 to 18% in 2019—and reduced new infections among younger at-risk populations.
As HCV cases continue to soar globally, Australia’s demonstrated success in broadening access to and lowering rates of HCV infection serves as a model for other countries, including the U.S. The authors urged readers to “address both the ‘undeserving’ label that is applied to people who inject drugs by much of the public and the fact that these populations continue to be underserved by the health sector.”
Removing Access Restrictions to HCV Treatment: What’s Needed
In 2016, the World Health Organization set a goal of reducing new viral hepatitis infections by 90% and deaths due to viral hepatitis by 65% by 2030. As part of its strategic plan, the agency called on countries and their governments, policy makers, and health care systems to increase health equities within the hepatitis response and scale up screening, care, and treatment services, among other actions.
Whether the U.S. will make that target is yet to be seen, although some experts say that 28 countries, including the U.S., are not expected to eliminate HCV until 2050. This is due in part to lack of investment—particularly investment in reducing the rate of transmission in vulnerable communities and combating the widespread stigma associated with drug use.
“Shaming, blaming, stigmatizing, and discriminating against people based on behavior doesn’t work at controlling an epidemic,” says Gay. “We won't seriously meet viral hepatitis goals by 2030 without eliminating the stigmatizing, discriminatory, and criminalizing laws and policies that drive these epidemics.”
According to Gay, eliminating HCV will require greater access to harm reduction services, sterile drug use equipment, and other prevention tools—as well as a new way of approaching the full-spectrum needs of people most vulnerable to the infection. “We need to expand hep C services in community-friendly settings and increase peer-designed trainings on cultural competency, anti-racism, and substance user health,” she says, “so that medical providers avoid problematic language and attitudes—and are better equipped at recognizing their humanity and meeting the needs of people who inject and use drugs.”