In April 2010, Sean tested positive for the hepatitis C virus (HCV) in Seattle’s Harborview Medical Center. Aged 37, he had been an injection drug user since 1980, when he was 17. Even though his results implied that he would benefit from treatment, Sean was not started on the standard regimen—technically termed “pegylated interferon and ribavirin therapy”—that would have required between 24 to 48 weeks to complete. That was due to the circumstances in which he arrived at Harborview: He had just been arrested, and was brought to the hospital before being transferred to the King County Jail.
Sean lived with untreated hepatitis C for the next five years, until 2015. And that wasn’t down to a lack of interest on his part. “I wanted to get treatment,” he recalls in a phone call with Filter. But a series of cumbersome bureaucratic procedures eventually prevented him from receiving care while in prison.
He was re-tested at King County Jail, and then, when he arrived at Coyote Ridge Corrections Center in rural eastern Washington state—where he would be incarcerated until 2012—he had to wait “another month or two to get into medical [care].” Once he finally saw the prison’s medical provider, Sean needed yet another blood test, and this procedure set him back by another “four or five months.”
Finally, Sean saw a doctor. “They were like, You have hep C,” he narrates. “And I was like, I know!”
The frustration is palpable in Sean’s voice. “And then, they were like, It’s too late to start treatment.” At the time, the prevailing treatment would have taken almost a year. “I was months away from getting out, so they wouldn’t have been able to start me on the treatment.”
Sean sighs, “Jails and prisons: you’re at the mercy of whoever holds the keys there.”
Barriers to Hepatitis C Treatment During Incarceration
The majority of incarcerated people living with hepatitis C—97 percent, to be exact—are unable to access proper medical care in correctional facilities across the country. This for a treatable condition that affects one in three incarcerated people, according to one 2013 CDC estimate.
In 2017, Washington state offered treatment to only 5.85 percent of incarcerated people with HCV. And many other states’ rates were lower still.
“There is a lot of stigma. It’s not always a priority at these jails.”
“Treatment is very spread out across jurisdictions,” Mandy Altman, director of the National Hepatitis Corrections Network, tells Filter. According to the findings of a survey conducted on HCV care in correctional facilities by Siraphob Thanthong-Knight, the 2018 Investigative Journalism Fellow at Columbia University Graduate School of Journalism, generally low treatment rates contain stark disparities: Maryland treated 21.19% of eligible incarcerated people in 2017, while Ohio treated 0.14% that year.
The scarcity of treatment options for hundreds of thousands of incarcerated people has a host of causes, explains Altman, and discrimination is top of the list. “There is a lot of stigma within these facilities. It’s not always a priority at these jails.”
The cost of medications, such as Gilead’s notoriously pricey Harvoni and Epclusa, as well as the associated bureaucracy of procuring them, can also pose a barrier for facilities that are not already committed to providing care for those they incarcerate. “A lot of it has to do with the cost of medications,” Altman continues. “An administrator in a corrections setting has to figure out how to go about acquiring that. They need to go through, like, five systems to access it.”
“If we treat everybody with hepatitis C, it would exceed the entire total pharmaceutical budget for everything else.”
Dr. David Paulson, the medical director of the Minnesota state prison system, described to Thanthong-Knight the simple financial limitations faced by correctional institutions: “If we treat everybody with hepatitis C, it would exceed the entire total pharmaceutical budget for everything else and there would not be enough budget left to treat patients with other diseases.”
And then there are personal barriers to accessing HCV treatment. Given the lack of institutional commitment to caring for people with HCV, “There’s a lot of self-advocacy needed in jail,” says Altman.
Sean, having spent two years in correctional facilities, can confirm this: “Any sort of treatment you were receiving was prisoner-driven. [Correctional facilities] weren’t being too proactive about it.”
Altman adds, “There’s a lot of competing priorities for someone in jail. You are in crisis. Hep C may not be someone’s priority. So it’s about doing what the patient wants. When they want treatment, it’s about getting them that.”
So You Got HCV Meds. Now What?
New York City stands out when it comes to treating people with hepatitis C who are incarcerated in its jails. According to a study conducted by researchers at New York City’s Health and Hospital Corporation (HHC) and presented on March 20 at the National Hepatitis Corrections Network’s annual conference, incarcerated people in the city are more likely to initiate HCV treatment while in jail than when they’re out in the community.
Between November 2013 and October 2017, 67 percent of all 269 patients with chronic HCV admitted to NYC jails and treated with direct-acting antiviral (DAA) therapy initiated it while behind bars. (It should be noted, though, that Medicaid reimbursements for DAA therapy were hard to come by during much of the period of this study, which could contribute to this trend.)
Although HHC projects that jailed patients will increasingly initiate DAA therapy in 2019, people with hepatitis C who are ensnared in the city’s corrections system still face barriers to accessing care. One such issue, as the HHC researchers identified, is ensuring continuous care after someone is released. In particular, the study found that people who initiated DAA therapy in jail were 66 percent less likely to receive a follow-up assessment than their community-initiating peers. Testing for the detectability of the virus in the bloodstream, which is technically-termed “sustained virologic response” (SVR), is critical in determining the efficacy of therapy.
“If jail systems were better at working with community health organizations, they should be able to hand off [HCV care].”
According to the HHC study, New Yorkers released during—not after completion of—treatment had worse outcomes: namely, lower rates of SVR testing than their peers who completed while incarcerated. They even had the lowest rate of SVR testing out of all patients considered in the study—including those who initiated in the community.
Perhaps the comparatively negative outcomes for people released during treatment informed the reasoning of the corrections doctor who declined to start Sean’s treatment while he was incarcerated.
Mike Selick, the hepatitis C training and policy manager for Harm Reduction Coalition, explains that some providers wouldn’t want patients like Sean “to be cut off from their medication.” But Selick also notes that “If jail systems were better at working with community health organizations, they should be able to hand off [HCV care].”
“The treatment at this point is really easy! Pretty much any doctor anywhere can continue someone’s care,” Selick adds. “Hep C medication is very forgiving. Even if you miss a dose, it is still very effective.”
Yet when Sean is asked whether he was connected with medical care for his HCV treatment after testing positive multiple times during his incarceration, he retorts: “Oh, God no! All you get is $40 and a bus ticket.”
Experiences like Sean’s are driving care providers and advocacy organizations to work to ensure people positive for HCV have continuous care when moving from jail to the community. In his presentation at National Hepatitis Corrections Network’s conference, Justin Chan, director of Viral Hepatitis Services at HHC’s Correctional Health Services, recommended pre-release supports, like needs assessments and HCV education, as well as post-release ones, like reminder calls and appointment accompaniment.
Working in New York City, Selick is impressed with hep C resources in the five boroughs—particularly the clinics in the Bronx, which has some of the highest rates of newly reported cases in the city. Since 2014, the city has funded the Viral Hepatitis Initiative Program, which includes both city agencies like HHC and nonprofits like Harm Reduction Coalition—to the tune of $1 million for Fiscal Year 2019.
Asked about next steps for hep C care in New York City, Selick puts it simply: “There needs to be more of it.”