Kentucky is one of 8 states doing the worst job of treating hepatitis C in prisons
This story was originally published as part of a STAT news investigation into state prisons failing to treat hepatitis C infections among incarcerated people.
In 2022, whether an incarcerated person gets cured of hepatitis C is largely determined by where they’re locked up.
If you’re sentenced for breaking a state law in most of middle America, you’re likely out of luck. Iowa treated less than 4% of its hepatitis C-positive prison population last year with the new class of curative antiviral pills. South Dakota has a policy on the books that blocks treatment for anyone who doesn’t have serious liver damage. And Nebraska even forces people to sign forms acknowledging these drugs might not work — when they almost always do.
If you’re incarcerated in New England and have hepatitis C, you don’t want to be in New Hampshire, which treated just 22 people in 2021, despite housing an estimated 250 people with hepatitis C in its prisons. The state declined to share its exact figures.
If you’re in Georgia or Texas, you might not even know you have hepatitis C. Those states don’t actively check everyone in their custody for the virus. But if you’re locked up in Utah or Virginia, prison officials will more aggressively seek out your infection. The former stood up a massive testing effort in 2021 that identified roughly 800 previously unknown cases of the virus.
The patchwork of hepatitis C policies and treatment rates is a testament to the advocacy of incarcerated people, who have managed to secure treatment and change restrictive policies in quite a few places. But it also underscores how much still is broken about hepatitis C treatment in prisons, nearly a decade after curative drugs hit the market.
“Progress is uneven,” said Carolyn Wester, the head of the Centers for Disease Control and Prevention’s hepatitis C work. “Some are already implementing best practices, and there are others that have not.”
As part of its examination into the U.S. prison system’s failures to prevent deaths in prisons from hepatitis C, STAT is highlighting eight states that are doing the worst job taking care of incarcerated people with the virus.
We chose some states, like Nebraska and Illinois, because they are actively discouraging incarcerated people from getting the care they need, or defying lawsuits that require them to treat prisoners with the virus. We chose others, like Texas and Florida, because they have some of the highest numbers of deaths from hepatitis C, though each has pledged to change that in the months and years ahead.
Nebraska tops this list because its officials mislead people about the effectiveness of hepatitis C drugs, in a seeming effort to dissuade them from getting hepatitis C treatment.
The state makes incarcerated people sign a consent form before initiating treatment that claims there is “a diversity of medical opinion as to what constitutes the best way to manage HCV infection.”
That’s not true. “There isn’t debate,” said Raymond Chung, the director of hepatology at Massachusetts General Hospital, who previously led the American Association for the Study of Liver Disease. “This is the standard of care.”
The form also claims there’s “no guarantee this treatment will make you feel any better or live any longer.” But it makes no mention that more than 95% of people who take the drugs are completely cured of the virus.
The form is not only incorrect, it’s unethical, said Arthur Caplan, the founding head of the Division of Medical Ethics at NYU Grossman School of Medicine. If that consent form was presented to a patient at a wealthy hospital, he added, the hospital would be sued.
“Any doctor who administered that consent form should be thinking hard about whether that’s consistent with professional ethics,” said Caplan, who called the form “utterly deceptive.”
Laura Strimple, the chief of staff for the Nebraska Department of Correctional Services, said that the state “does not actively discourage anyone from receiving Hep C treatment” and that the consent form, which STAT obtained through a record request in March, “is currently undergoing review and update.”
Beyond its form, the state’s treatment rates are among the worst in the country. In 2021, Nebraska only treated nine of the 286 people in its custody that are known to have hepatitis C. Strimple noted that the treatment number increased to 22 in 2022.
Arizona agreed to overhaul its prison health care system back in 2014, but at least 112 people in the state died from hepatitis C-related complications in the six years after, according to STAT’s tally.
Incarcerated people have filed more than a dozen lawsuits against the state in recent years after they’ve been denied access to the curative drugs, according to STAT’s analysis of legal filings.
One such lawsuit, filed by Brian Dann in 2017, alleged that the state had delayed providing him hepatitis C drugs though he had severe liver damage. By the time Dann was able to access the medications, his liver was too damaged to recover. He died in March 2018 during a procedure meant to temporarily repair his liver, the Arizona Republic reported.
The state’s own confidential reviews of in-custody deaths appear to confirm that several incarcerated individuals died unnecessarily from hepatitis C, including a patient who had the virus for 20 years but wasn’t considered for treatment until “months before his death from complications of hepatitis C and liver cancer,” according to a recent lawsuit filed by the American Civil Liberties Union, which references portions of the death reviews.
Progress has been so meager that a federal judge in June held the state in contempt for its failure to improve its health care system. “Defendants have failed to provide, and continue to refuse to provide, a constitutionally adequate medical care … system for all prisoners,” wrote federal Judge Roslyn O. Silver. “Defendants have been aware of their failures for years and Defendants have refused to take necessary actions to remedy the failures.”
The Arizona Department of Corrections declined to provide STAT with up-to-date treatment data, despite its obligation to do so under the state’s public record law. Records released as part of the ongoing ACLU lawsuit indicate that as of October 2021, upward of 8,000 people were known to have hep C in the state’s prisons; the state has lately been treating roughly 50 people per month for the virus.
A spokesperson for the DOC said the state “has taken a proactive approach to the treatment of chronic Hepatitis C in our patient population and will continue to treat patients consistent with evidence-based practices,” and that it is working to “optimize” the number of people being treated for the virus.
South Dakota treated just seven people in 2021 with hepatitis C medications — the smallest number of people treated by any of the correctional systems that shared their data with STAT.
South Dakota houses roughly 3,500 people, making it one of the smaller correctional systems in the country, but even so, seven people represents less than 2% of its hepatitis C-positive population. The state knows of 382 people in its custody in 2021 with the infection, it said.
The state’s policy requires people to have severe liver scarring, known as F3 fibrosis, or another serious risk factor, like an HIV diagnosis, to even be considered for treatment. There are a number of ways patients can be kicked off the state’s treatment waitlist, too. If they’ve recently taken part in high-risk behaviors like tattooing, or used drugs or alcohol in the past 12 months, they can be removed from the list for a year. Even refusing a medical appointment disqualifies people from being considered for treatment for a year.
The most surprising part of South Dakota’s restrictive policy is that up until recently, it was actually administered by the state’s public health department, rather than by the prison itself or a private medical contractor. That unusual agreement means that the same department in charge of combating infectious diseases in South Dakota is the one erecting barriers to care for the state’s prison system.
A Department of Corrections spokesperson told STAT, however, that the medical care for incarcerated people was transferred back to the Department of Corrections in October. “We are in the process of reviewing, revising, and developing policies that follow national best practices, including enhancing our policy for the treatment of hepatitis in a way that is consistent with community standards of care,” the spokesperson said.
Illinois agreed in 2019 to revamp its entire prison medical program, as part of a civil rights settlement. But it’s still falling woefully short — and the Department of Corrections’ own documents indicate that people are still unnecessarily dying of hepatitis C.
An independent review of one such death found that a 56-year-old man had been referred for hepatitis C treatment in 2017 but was never formally considered for the treatment until a few months before his death in November 2021.
That same report found that the agency wasn’t recording the recommended regular liver cancer tests for people with advanced liver disease. Instead, the report found that “only two of [the] 30 correctional facilities provided data in their Chronic Care Rosters indicating that liver ultrasonography screening is being performed on small numbers of patients with hepatitis C.”
As of Dec. 2021, Illinois knew of more than 800 people in its custody with Hepatitis C, but six prisons didn’t treat a single patient that year. Stateville, a maximum security prison that houses more than 2,000, treated just one.
Illinois did not respond to requests for comment.
Kentucky is actively fighting against improving its hepatitis C policies. In 2016, a group of incarcerated people sued the state on behalf of more than 1,200 people with the virus in custody. The state fought the case in court and won. A federal judge found that a modest 2018 effort to revise the state’s treatment protocols was enough.
Kentucky treated just over 100 people in 2021, when it knew that at least 1,841 people in its custody had the virus.
Kentucky did not respond to requests for comment.
Oklahoma prisons have a massive hepatitis C problem for a state its size. In 2021, prison officials estimated that 2,119 people had the virus.
State officials acknowledge that hepatitis C played a role in the deaths of more than 84 incarcerated people from 2014 to 2019 — the third-largest total of the 50 states. The mortality rate for prisoners in Oklahoma was 71 per 100,000 people in 2019, more than five times higher than in the outside community.
The state, however, does appear to be trying to improve its response to the virus. The corrections department requested nearly $100 million to increase hepatitis C treatment in the state, though legislators have appropriated only a fraction of that. Oklahoma treated 589 people for the infection in 2021, roughly 27% of those it knew to have the virus.
Oklahoma did not respond to request for comment.
Hepatitis C was a cause of death for at least 130 people in the Florida’s custody from 2014 to 2019.
The state’s high death count is likely due partly to the sheer size of the state’s correctional system, which is the third-largest in the nation. But the state also has a long history of denying people access to hepatitis C cures. A federal judge chastised the state in 2019 for a “long and sordid history of neglect” for people with the virus.
But there is reason to be hopeful: The state was ordered, thanks to a prisoner-led lawsuit, to expand its treatment and testing for the virus.
Already, between January 2018 and January 2021, Florida treated more than 3,000 people for the virus. But in January of last year, Florida prisons still housed roughly 7,000 people with hepatitis C who hadn’t been treated for it. The state initially declined a record request seeking updated treatment data from the state, but just ahead of publication, the state responded that it “has treated 9,128 patients for Hepatitis C,” total, through Nov. 22.
“[Florida Department of Corrections] takes the health and safety of every inmate very seriously,” the spokesperson added.
Florida, more than other states, will also be watched in the coming years for how well it cares for those who are already dangerously ill with the virus. As of January 2021, more than 1,100 men and women in Florida’s prison system were known to have permanent liver damage, known as cirrhosis. At least 28 were on the verge of liver failure, meaning they will likely need intensive monitoring and care to stay alive. Under the court order, it is required to refer anyone with the most advanced form of cirrhosis to a liver transplant specialist within 30 days.
More than 60 people have died of hepatitis C-related complications in Texas prisons since 2020, and hepatitis C has played a role in more than 200 deaths since curative therapies hit the market, according to Texas’ own data, which is more detailed than the data it submits to the federal government.
The state, which operates the largest correctional system in the country, does not test everyone in its care for the virus, despite experts’ recommendations. As of June, only half of the system’s intake facilities have stood up opt-out testing programs, according to a department spokesperson.
In fiscal year 2020, Texas treated 970 people for hepatitis C. The number of incarcerated people infected fluctuated that year from 11,301 to 15,563. Officials refused to provide 2021 treatment data.
There are signs, however, that the situation in Texas may improve in the coming years. The state agreed to settle a prisoner-led lawsuit last year. Under its terms, Texas will give the antiviral drugs to at least 1,200 prisoners per year until it’s treated at least everyone diagnosed with hepatitis C in Texas custody as of September 2020.
A spokesperson for the Texas prison system said in a statement after this article was published that since the state settled the 2020 lawsuit, it has treated 3,000 of the 8,000 prisoners it knows to have hepatitis C.