Stat

FINALIST—PUBLIC INTEREST

“Death Sentence” is a package of stories—more appear on the Stat website—that encapsulates Nicholas Florko’s sweeping two-year investigation into the refusal by state prisons to test and treat for hepatitis C. As a result, more than 1,000 incarcerated people have died from hepatitis C in the six years since a simple cure became available. “States are effectively killing their prisoners by withholding treatment,” explained the National Magazine Awards judges. “ ‘Death Sentence’ is an alarming and ultimately damning indictment of their inaction.” Florko joined Stat in 2018 and now covers the impact of business decisions on public health. An online-only publication launched in 2015, Stat is dedicated to covering health care and the life sciences. This year Stat was nominated for the National Magazine Award for General Excellence as well as the award for Public Interest.

Nicholas Florko

Death Sentence

There is a simple, outright cure for hepatitis C. But state prisons across the country are failing to save hundreds of people who die each year from the virus and related complications.

A Stat investigation has found that more than 1,000 incarcerated people died from hepatitis C–related complications in the six years after a curative drug hit the market. The death rate in 2019 was double that of the broader U.S. population.

In the stories in this piece, reporter Nicholas Florko documents prisons’ blatant refusal to test and treat people with the condition, even, in some cases, in the face of legal orders to do so. He introduces incarcerated people who watched their health deteriorate or lost their lives because of the rationing of hepatitis C drugs. Prisons say the medicine, even as its price drops, is too expensive for them to distribute widely. But incarcerated people are fighting back: some have fought for the treatment in the courts and won, forcing the system to care for them and, in some cases, other incarcerated hepatitis C patients.

Death, Despite a Cure

Falls City, Nebraska—John Ritchie shouldn’t have died.

He knew he had hepatitis C. And he knew, too, about the simple, once-daily pills that could fully cure him of the potentially deadly viral infection in about twelve weeks.

But Ritchie was serving a twenty-year sentence for armed robbery, and the Missouri Department of Corrections refused to treat him.

Ritchie begged repeatedly for the medicine. He went through all the formal steps to request medical care. The prison system knew he was getting sicker and sicker—it documented his deteriorating condition in his health records. The prison’s doctors wrote frequently he would benefit from hepatitis C treatment. But officials still denied him, in the same way a Stat investigation documented prisons around the country are still denying thousands of others the cure.

So the virus infecting Ritchie’s blood continued to replicate, scarring his liver until it was so damaged that it could hardly function. Eventually he was diagnosed with liver cancer, a common complication of untreated hepatitis C. Now, the prison argued, he was too sick for the drugs to work. They refused him again.

“I don’t have the energy to do nothing anymore,” Ritchie told a court in 2019. “I try to talk too long, I can’t breathe … I get out and get a little fresh air, but I can’t do a lot of walking, and I can’t get in the sun.”

He died in June 2021 at the age of sixty-four, nearly five years after his first request for medication.

Stat’s investigation found that 1,013 people died of hepatitis C–related complications in states’ custody in the six years after the first cure, a Gilead antiviral drug called Sovaldi, hit the market in late 2013. This tally, based on an analysis of 27,674 highly restricted death records, has never before been reported.

Many of those 1,013 people were not serving life sentences; they would likely have had the chance to return home, reapply for jobs, and reconnect with parents, spouses, and children—or, in Ritchie’s case, his one grandchild, Gabe.

Many should not have died. In fact, the treatment for hepatitis C is a modern medical marvel. The scientists who paved the way for its discovery won a Nobel Prize. Public health experts say it’s possible to cut hepatitis C deaths to virtually zero and effectively eliminate the virus as we’ve done with smallpox or polio.

Francis Collins, the White House science adviser and former longtime director of the National Institutes of Health, called Stat’s findings “unacceptable.”

“You have to wonder if this individual [Ritchie] had received [treatment] at the first opportunity, would he still be alive today?” Collins said.

Told of Stat’s findings, Chelsea Clinton, a global health advocate and vice chair of the Clinton Foundation, said the rationing of hepatitis C care by prisons and people dying as a result is “incredibly infuriating.”

“It certainly is a gross injustice that we are continuing to punish people who are already incarcerated as a punishment,” she said. “That sometimes there’s a death sentence attached if there’s untreated hepatitis C—that to me is morally indefensible.”

Stat’s investigation is based on interviews with nearly one hundred incarcerated people, grieving families, prison officials, and other experts; more than 225 public records requests; and reviews of over 150 lawsuits. The reporting underscores the harrowing and largely preventable toll of substandard hepatitis C care for prisoners.

It also reveals that state governments are failing to care for the people in their custody as they are required to do under U.S. and international law. In many cases, prison officials did not simply fail to act but actively erected barriers to hepatitis C testing and treatment with the curative pill. They are avoiding mass testing to ensure they wouldn’t have to treat as many people, misleading incarcerated people about the effectiveness of available medicines and refusing to share death and treatment data that should be public.

Some states go even further to flout their obligations: in Illinois last year, for example, prison officials didn’t treat anyone with the virus at a number of the state’s prisons, despite orders from a federal judge to do so.

The hepatitis C–related death rate for people in prison was more than double the rate in the overall population in 2019, even without adjusting for the fact that the prison population is younger than the overall population.

“Most of those deaths due to hepatitis C—not all of them, but most of them—are preventable, and it’s inexcusable that they died,” said Jeff Keller, a board member and president-elect of the American College of Correctional Physicians, which represents clinicians who work in prisons, and the former chief medical officer of Centurion, a major private prison health-care provider. “There’s no reason for them to have died.… It’s unconscionable.”

Yet for those who run the prison systems, there is a reason: politicians and state corrections officials say the issue is money. Gilead drew extensive criticism for its initial decision to charge $84,000 for the medicine; even now, after an unprecedented price drop, treatments for hepatitis C cost roughly $24,000 per course of treatment. Missouri estimated in 2019, for example, that it would cost the prison system $90 million to treat every incarcerated person with hepatitis C—nearly 70 percent percent of its medical budget.

“In the end it all comes down to [the fact that] all prison systems are underfunded,” Keller said.

Stat reached out to prisons nationwide to respond to the deaths. Most did not respond at all. In one case, Missouri, the prison forwarded Stat to its private contractor for medical care, Centurion. Centurion did not respond.

But some prisons are finding ways to make the math work. Death rates in prison from hepatitis C are starting to drop. Some two dozen state correctional systems have publicly pledged to ramp up their screening and treatment for hepatitis C.

Most of that progress has been driven by the extraordinary efforts of incarcerated people themselves, who have filed lawsuits challenging their state’s policies, often without the help of a lawyer or even the internet, in hopes of saving their own lives or those of their friends.

“There are a lot of people that feel that just because I’m in prison I can’t make a difference in the world—and that enrages me,” said Mathiew Loisel, the lead plaintiff in a lawsuit that successfully forced Maine to ramp up treatment of hepatitis C in prisons. “I feel like … I have done something meaningful with my life.”

For those who lose their lives to hepatitis C, it is a bitter irony: Few conditions that cause so much suffering are so easily curable.

The new treatments had especially raised hopes for prison doctors because they have seen the virus run rampant among the populations they treat. Hepatitis C primarily spreads through risky behaviors like IV drug use or unsanitary tattooing. It’s estimated that between 12 percent and 35 percent of people in prison have hepatitis C, while less than 2 percent of the overall U.S. population carries the virus.

If untreated, the bloodborne infection can lead to scarring and permanent damage of the liver known as cirrhosis. The scarring can lead to life-threatening complications, including liver cancer or dangerously swollen blood vessels prone to hemorrhage; in some cases, hepatitis C destroys the liver entirely.

The outsized toll it has taken on the prison population is particularly distressing for public health experts because prisons should be the ideal setting for treatment. They provide health care to the very population at high risk for the virus and who often do not have regular contact with the medical system due to factors like unstable housing, lack of health insurance, or drug use.

“You know that this population has high rates [of infection], you have them there for a period of time where you can screen every single person that comes through,” said Ranit Mishori, the senior medical adviser for Physicians for Human Rights. “It’s a wonderful opportunity to start and complete the treatment.”

Even modest increases in testing and treatment for the virus would have massive consequences not just for incarcerated people but for the broader community, too. Roughly 95 percent of people in prison will be released into the community at some point—and if untreated, so will their infection.

“Preventing and treating hepatitis C protects families, friends, and communities after they reenter society,” said Tom Frieden, the former director of the Centers for Disease Control and Prevention. “Ensuring quality care in correctional facilities and good linkage to care as individuals go back into the community results in fewer infections, healthier lives, and lower health-care costs.”

Gregg Gonsalves, an associate professor of epidemiology at Yale, who has written about the rationing of hepatitis C care in prisons, put it even more bluntly: “Prison walls aren’t as concrete as you think. Things go in and out of prisons—and so does infectious disease.”

One peer-reviewed study found that universal testing of people in prison coupled with treatment for just a subset of hepatitis C–positive prisoners would prevent 4,200 to 11,700 liver-related deaths over 30 years, 80 percent of which would have occurred in the community.

And unlike many other medical issues that plague the prison system, such as complex mental health problems and substance use disorders, hepatitis C is easy both to diagnose and to treat with a once-daily pill.

Yet prisons haven’t capitalized on the new medicines. The hepatitis C–related death rate in prisons in 2019 was 10.0 per 100,000 people, compared to a rate of 4.3 per 100,000 in the general population, even before adjusting for age in either population.

That discrepancy represents a glaring inequity between the care afforded to the broader U.S. population and that provided to incarcerated people across the country, Clinton said.

“It’s a health equity issue because of the structural vulnerability of people who are incarcerated,” she said. “It’s a health equity issue because of who we disproportionately incarcerate in this country, particularly men of color. It’s a health equity issue because we are not taking a whole-of-community approach to really eliminating hep C.”

It’s hard to grasp just how much death the 1,013 figure represents. The count is more than quadruple the number of people who died from AIDS-related complications in the same time period in state and federal prisons combined. It is more, too, than either the number who died of homicide behind bars or who died of drug and alcohol intoxication. In fact, it’s nearly the same number of people currently housed in Vermont prisons.

“These statistics are simply awful,” said Charles Rice, one of the three scientists awarded the Nobel Prize for their work on hepatitis C. “We need to find better ways to get those infected into treatment.”

Stat’s analysis focuses on 2014 to 2019 because the federal government extensively changed the way it collects data on deaths in custody in 2019. But data from individual states that publicly report deaths in their facilities suggest that incarcerated people continue to die from hepatitis C complications. In Texas, which publicly reports the cause of death for every incarcerated person who dies, more than sixty people have died of hepatitis C–related complications since 2020.

The investigation focused exclusively on state prisons, which house roughly 85 percent of the incarcerated people in this country. (The far smaller federal prison system has also generally done a better job at testing and treating for hepatitis C than state prisons.)

Public health experts said the death rates seen in prison are far higher than they’d expect. Carolyn Wester, the director of the Division of Viral Hepatitis at the Centers for Disease Control and Prevention, called the rate “very concerning.”

“I’d like to see those related death rates much, much lower,” Wester said. “With highly effective curative treatments, everybody should be treated for hep C—we should be tackling these [cases] well before disease progression, liver cancer, death are on the table.”

The aggregate statistics obscure particularly striking inequalities in hepatitis C care in certain states.

In Oklahoma, for example, the prison death rate for hepatitis C–related deaths was more than five times the overall state rate in 2019: 71.9 per 100,000 for people behind bars compared with 13.5 per 100,000 statewide.

Some of the outsized death rates in prison from hepatitis C are likely due to the fact that prisons have a higher prevalence of hepatitis C than the average population—and some people likely come into prison with hepatitis C that is so advanced that they’re already at a much higher risk of dying. But experts Stat spoke to said that unequal care plays a large role.

John Ward, former head of the CDC’s hepatitis work, told Stat that prisons should be able to lower their death rates from hepatitis C to at least those seen in the outside community.

“This is a real problem, we have a real solution, and it’s not being delivered to the people who need it the most,” said Ward, who is now director of the Coalition for Global Hepatitis Elimination at the Task Force for Global Health.

Incarcerated people like John Ritchie are dying of hepatitis C because prisons are gambling with their lives to save money.

The drugs that cure hepatitis C were astronomically expensive when they first hit the market. The first such drug, Gilead’s Sovaldi, cost $84,000 per course of treatment, and prison systems argued that limiting treatment to only the sickest individuals was the most realistic way to control costs.

Now, the drugs cost $24,000 per course of treatment, and prisons can often cut better deals to bring it closer to $15,000 per course of treatment.

That still represents a massive sum of money for prisons, which often have to operate with extremely tight budgets set by state legislatures.

“It’s still a high price when you have so many patients,” said Josh Sharfstein, a vice dean at Johns Hopkins University who has helped correctional departments figure out how to pay for these drugs.

Prisons say that limiting care to the sickest patients is a sensible policy, given those constraints, because hepatitis C damages the liver gradually—over years or decades—allowing correctional systems to prioritize who gets treatment based on their budget needs.

Prison systems have also argued that prisoners’ pleas for the drugs constitute, as Missouri officials put it, a “mere difference of opinion concerning appropriate medical care,” and are attempts by prisoners to direct their own medical treatment. In one legal filing, Missouri called the broader medical community’s recommendations to treat people as soon as they’re diagnosed with hepatitis C “aspirational public health proposals.”

Missouri officials did agree in October 2020 to modestly ramp up the correctional system’s testing and treatment for hepatitis C in response to a lawsuit brought by Ritchie and a number of other incarcerated people infected with the virus.

However, the department is still treating just a fraction of its hepatitis C–positive population. Though the state knows of more than 900 hepatitis C–positive people in custody, just 13 percent of them received the curative pills last year, according to public records obtained by Stat.

Even now, a number of other states still rely on policies like Missouri’s first one. Prisoners in South Dakota and Ohio, for example, aren’t eligible for treatment until they are on the cusp of cirrhosis.

Many policies Stat reviewed were too vague to confirm whether people without advanced liver disease are ever eligible for treatment. Nebraska’s policy, for example, says that patients with cirrhosis are the “highest priority” for treatment, but that policy does not concretely say how the department would handle people with less severe illness.

As a result, just a fraction of the people who have hepatitis C in these states are getting access to treatment.

In 2021, at least a dozen states were treating less than 20 percent of their hepatitis C–positive population. A number of states, including Indiana, Iowa, Nebraska, and West Virginia, were treating less than 10 percent. South Dakota, which housed at least 382 people with hepatitis C in 2021, treated just seven people.

Additional states may have similarly low treatment rates, but several declined to share how many people were getting hepatitis C medicine. And some provided incomplete data that made it impossible to discern their rates.

Roughly 30 percent of people with hepatitis C clear the virus without treatment, so it is possible some portion of prisoners with the condition didn’t need the medicine. But prison records were not detailed enough to determine what proportion of those with hepatitis C were newly infected, and therefore able to clear the virus, or were chronically infected and needed medication.

Some states, moreover, are still not doing the bare minimum to address the virus in their facilities: testing everyone.

Hepatitis C is referred to as the “silent epidemic” because it often does not cause symptoms until a person is very sick. Universal testing for the virus should catch most cases, but prisons in Texas—the largest correctional system in the country—don’t proactively test everyone in their care for hepatitis C, a spokesperson told Stat in June.

Georgia tests only a tiny fraction of its incarcerated population. In 2021 the state reported that just 2,286 prisoners had a hepatitis C test on record. Another 44,250 incarcerated people were listed as “not reported.”

This lack of testing almost certainly means doctors only catch hepatitis C when an individual is very sick and has developed a complicating illness, such as cancer.

Asked why prisons wouldn’t test everyone in their care for hepatitis C, Keller, the official from the American College of Correctional Physicians, was blunt: “They don’t want to find every inmate that has hepatitis C, because if they find them then they’re on the hook.”

For every incarcerated person who dies of hepatitis C, there are countless more individuals who will live the rest of their life with the collateral damage of an irreversibly wrecked liver, including an outsized risk of liver cancer.

“If we wait until they already have cirrhosis, we are condemning them to this lifetime of cancer risk,” said Jordan Feld, a hepatitis C expert at Toronto General Hospital. “That liver is never a normal functioning liver again.”

As of January 2021, more than 1,100 men and women in Florida’s prison system alone have cirrhosis.

“In what world do we … think it makes sense to turn them out worse than what they were when they went in?” asked Gregory Belzley, an attorney that represented people in prison with hepatitis C.

It’s not just the people infected with the virus who suffer. Families have to push to get their loved ones into treatment or to get them home before they die behind bars.

Charlene Hill, Ritchie’s longtime partner, spent hours on the phone with Missouri’s Department of Corrections each week, begging for him to get treated.

Hill lives in a subsidized, 600-square-foot one-bedroom apartment on the Kansas-Nebraska border, in Falls City. Her “hooptie,” an old grey Ford Taurus, could hardly even make the drive to visit Ritchie, 260 miles to the southeast in Jefferson City, Mo.

The two, married as teenagers, had been together on and off for nearly four decades. After a divorce, they reconnected in their late fifties, thanks to online sleuthing by their daughter, who found Ritchie’s location online. Hill and Ritchie hadn’t spoken in a decade, but they quickly realized how little had changed since they met in the 1970s, when Hill asked Ritchie for some spare change at a nightclub and he handed her a twenty instead.

Hill called everyone she could think of in her quest to get him treatment. Once, she tracked down the number of a local representative and tried to convince him to intervene. She even tried to pay for the treatment herself and have it brought into the prison.

“He just wanted help before he died, and we couldn’t get him no help—nobody wanted to help,” Hill said through tears. “They just let him die.… I begged and I pleaded and I cried and I hollered and I cursed—and it didn’t matter.”

Missouri officials argued they had spent the better part of the year before Ritchie’s cancer diagnosis preparing to treat him for hepatitis C. Once he had cancer, though, their hands were tied. Stat was unable to obtain Ritchie’s medical records, and Ritchie’s personal attorney declined to comment for this story. Ritchie’s personal lawsuit was settled in August 2020, according to public records.

Ritchie’s case pains Hill all the more because she herself is proof of what the drugs can do, if they’re taken at the right time. Hill was prescribed Gilead’s Harvoni for her hepatitis C in 2018, and just as Ritchie was formally requesting the therapy, she started taking hers.

Her treatment was quick and simple. Within a few weeks, she was cured.

Though she was never able to get him the pills she knew would save his life, Hill was able to get Ritchie medically paroled when his cancer was in its final stages. She hoped they could have a few good months together.

At one point, the couple had hoped to remarry once he made it out of prison. Ritchie had bought Hill an engagement ring and a new wedding ring, a gift to replace the one he bought her at Woolworths back when they first got married, when she was sixteen and he was seventeen.

In the end, Ritchie lived just five days out of prison. He was comatose the entire time, confined to a hospital bed. Hill stayed by his side the entire time, whispering in his ear, reassuring him that it was OK for him to let go.

“I think about him every day and all the struggles that we went through,” Hill said. “And how close we were to being able to be together.”

“We were so close,” Hill said. “We were so close.”

The Worst States

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 percent 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

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 percent 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 9 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

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 twenty 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 fifty 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

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 percent 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 twelve 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

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 fifty-six-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 December 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

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

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 eighty-four incarcerated people from 2014 to 2019—the third-largest total of the fifty 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 percent of those it knew to have the virus.

Oklahoma did not respond to request for comment.

Florida

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 November 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 twenty-eight 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 thirty days.

Texas

More than sixty 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’s 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.

An $84,000 Cure

State prison systems say they can’t afford to cure everyone with hepatitis C. The drug, even after a dramatic price drop, is still expensive.

But several states have recently figured out how to make the math work.

When Gilead launched Sovaldi, the first-ever cure for hepatitis C, in late 2013, it charged $84,000 for a course of treatment. Today, a version of Gilead’s most popular hepatitis C drug, Epclusa, retails for $24,000, less than a third of that price.

Now, prisons in states including Washington, Michigan, and Virginia are cutting deals with Gilead and makers of competing drugs to further reduce how much they spend on the medicines. Louisiana, which has one of the lowest corrections budgets per capita, has treated more than 1,600 people for the virus since signing a deal with Gilead in 2019. Other prisons have forged creative partnerships with hospitals and health departments to bring the costs down, too.

The recent progress demonstrates that the future of hepatitis C care in prisons doesn’t have to look like the early years after these drugs first launched, when more than 1,000 incarcerated people died from hepatitis C–related complications.

There’s no denying it: the drugs remain pricey, and treating everyone infected with the virus would eat up a big chunk of the prison medical budget in some states. In Oklahoma, for example, there were 2,119 people with hepatitis C in 2021. At $24,000 per course of treatment, the medicine would cost the state $50.9 million. That year, Oklahoma’s entire correctional health care budget was $85.7 million.

In Maine, the state with the third-smallest prison population in the country, the Department of Corrections needed the legislature to greenlight an infusion of $5.5 million when it had to expand its hepatitis C treatment program after settling a prisoner-led lawsuit.

“Although funding is difficult to come by, it was very difficult for anybody to argue for a better use of money,” said Ryan Thornell, the deputy commissioner of Maine’s department of corrections.

Further headway will depend on prison doctors, administrators, legislatures, and governors agreeing that it’s worth investing millions of dollars into hepatitis C treatment for incarcerated people and looking for deals and appropriations to help make it happen.

“These correctional facilities and their administrators … they need to see value in the public health intervention,” said Erin Fratto, a consultant who helps states craft hep C pricing deals. “They need to see value in the incarcerated individuals’ lives.”

In many ways, state prisons must contend with the same high drug prices that eight in ten Americans deem “unreasonable.” Though they have some power to negotiate a discount, they are excluded from the lower rates that federal agencies, like the Bureau of Prisons, command. Same as everywhere else in the U.S, drugmakers themselves set the price for their products.

Gilead, the company behind most of the successful hepatitis C treatments, has made billions off of these pills—pulling in $2.27 billion from Sovaldi in the first three months after it launched alone. Epclusa has garnered Gilead more than $12.5 billion in global sales since the drug launched in 2016.

The company has defended its prices as “fair and reasonable,” and “in line with the previous standards of care.” A statement to Stat highlighted that 95 percent of patients who get the drugs are cured.

“We are committed to helping make these medicines accessible to those who need them, including incarcerated individuals, and exploring innovative approaches that address access gaps in today’s healthcare system,” the company said. “Ensuring all patients have access to this highly effective and valuable treatment is a priority.”

Still, most states have set up systems to ration access to hepatitis C medicines because they say they’re too costly to give to everyone with the condition.

There is some truth to their argument, that not everyone needs immediate treatment with the medicines. About 30 percent of cases clear up on their own. And the disease is often very slow-moving; it’s estimated that roughly 15 percent to 30 percent of those with long-term infections will develop severe liver damage, known as cirrhosis, in twenty years.

Treatment for the virus also doesn’t prevent people from getting infected again, if they go back to risky behaviors like prison tattooing. That means prisons could be on the hook for multiple courses of treatment for a single person.

But public health experts say prisons’ focus on the sticker shock of these drugs is shortsighted. The top organization that addresses liver disease in the United States recommends that prisons treat people for the virus as soon as they’re diagnosed. That’s because getting cured of hepatitis C early not only prevents cirrhosis, it reduces the risk of other illnesses like liver cancer. Those with hepatitis C are also at higher risk for a number of other conditions that can seem totally unrelated to liver disease, like type 2 diabetes and coronary artery disease.

Ramping up treatment for hepatitis C also would dramatically reduce the prevalence of the disease in prisons over time, because those who are cured are no longer infectious and cannot spread the virus to other incarcerated people.

Jagpreet Chhatwal, an expert on the cost effectiveness of hepatitis C drugs and a Harvard professor, argues that the medicine’s price is now at the point that the health-care system overall would save money over the long term to pay for these treatments now.

“We are preventing all those future complications of hepatitis C that are expensive,” he said, estimating that a national effort to eliminate the disease—inside and outside of prisons—would cost between $8 billion and $10 billion, but would save the health-care system $26 billion.

So how does an underfunded prison make the math work to get these drugs?

A number of prison systems have turned to a federal drug discount program known as 340B to buy hepatitis C medicines. To do this, corrections departments partner with a public health department or another player in the health-care supply chain, such as a hospital, that is eligible to receive the discounts, which are only available to certain entities that treat the poor. Texas, Alaska, and Utah have all used this approach.

Other correctional systems have hammered out deals directly with drugmakers. States including Louisiana and Washington have devised so-called subscription deals that give the states access to an unlimited supply of these drugs for a set overall price. Others, like Virginia, have negotiated discounts with Gilead in exchange for preferring their drugs over their competitors.

“It really was a very, very easy process,” said Jamie Smith, the chief pharmacist for the Virginia prison system, regarding the state’s contract with the drugmaker.

Even so, Virginia spent a total of $29.3 million on hepatitis C drugs in fiscal years 2019, 2020, and 2021, according to Trey Fuller, assistant director of health services at the Virginia Department of Corrections. It treated nearly 2,300 incarcerated people during that time, according to records obtained by Stat.

For every state that’s cutting a deal, there’s another that isn’t.

In 2020, Florida’s Republican governor Ron DeSantis vetoed a $28 million funding increase for hepatitis C treatment in the state’s prisons. In Oklahoma, legislators have repeatedly rejected the state’s requests for significant spending increases for this population. Wyoming’s Republican governor Mark Gordon lobbied the state legislature to reject a modest $4 million bump requested by his own corrections department. DeSantis and Oklahoma’s top appropriator didn’t respond to requests for comment. A spokesperson for Gordon said that the governor believed that the department of corrections could cover the cost of hepatitis C medicines with their existing budget.

“Not everybody agrees that the corrections population should be treated medically in the same manner, for all the same issues, that the general population in the community is,” said Thornell, the Maine corrections official.

Jeff Keller, the president-elect of the American College of Correctional Physicians, put it even more starkly: “We physicians in the system are trying to do the best we can. The issue is that the legislators in the states [that don’t treat hepatitis C] don’t care … it doesn’t play well politically.”

A Crisis Kept Hidden

It’s virtually impossible to get information from states and correctional facilities about why people die in prison.

For more than two years, Stat endeavored to document the number of incarcerated people who died due to complications from hepatitis C, part of a broad investigation into prisons’ failures to prevent avoidable death and suffering related to the condition.

Prison systems fought our attempts at every turn.

This undertaking underscores how easy it is for prisons to hide the true reason why people die behind bars and how useless the existing data are for determining whether people in prison are dying from preventable conditions. The overwhelming difficulty of the task raises questions about whether and how family members or community advocates could ever use the information to sound the alarm about especially dangerous facilities, help families and friends figure out if a death was preventable, or pinpoint inadequate care for certain diseases.

By law, states are supposed to record the details of every death that occurs in prison. The Death in Custody Reporting Act, a federal law on the books for more than twenty years, requires states to fill out a four-page form that lays out basic information about every incarcerated person’s death, including the name, age, and ethnicity of each person who died and their cause of death.

The Department of Justice uses those data to compile high-level reports about deaths in prison, but the data are often reported at such a macro level that it’s not useful. Those reports, for example, only provide a tally of how many people die of “liver disease,” which could have been caused by everything from hepatitis A, B, and C to liver damage from alcohol use.

When Stat filed public record requests seeking the information, states gave multiple reasons for hiding it. Arizona, for example, said it didn’t maintain death data in the format Stat requested. When Stat sent a follow-up request demanding the exact forms the state already submits to the federal government, the state then said it couldn’t provide those documents because they were owned by the Department of Justice. (Other states provided the exact same forms.)

Arkansas is one of several states that declined to provide Stat with any data at all because the state’s records law doesn’t require it to provide data to out-of-state residents. (Arkansas governor Asa Hutchinson wrote the Death in Custody Reporting Act when he was in the U.S. House of Representatives.)

Other states, like Texas and Alaska, told Stat the forms they are required to submit to the federal government simply don’t exist. Texas added that it doesn’t have access to the forms because they’re submitted via a “data upload.”

Iowa said the information was confidential. Others, like Connecticut and Georgia, simply ignored Stat’s request altogether, in clear violation of public records laws.

Some states, like Indiana, shared data that were largely useless: The state only categorizes deaths as “homicide,” “use of force,” “suicide,” “accident,” or “natural causes,” making it nearly impossible to assess the adequacy of the prison medical system there.

In fact, Stat was only able to document the number of people who died of hepatitis C after crafting an agreement with the federal government to analyze the death data submitted by state prisons pursuant to the federal Death In Custody Reporting Act. That data is housed at the University of Michigan and is typically only available to Ph.D. researchers who are approved by the Department of Justice—an option unavailable to the average American. For our research, the DOJ withheld names and other demographic information.

Even those data were highly imperfect. Often, they were not detailed enough to discern whether someone died of hepatitis C. We excluded any such death from our tally, meaning it is likely an undercount of the actual death toll from this disease.

Prisons are only required to submit one cause of death to the federal government. What that means in practice is that a person who died of a hemorrhage due to hepatitis C–induced bleeding is often listed as dying of a hemorrhage, making it impossible to know if that bleeding was caused by something like hepatitis C or a homicide.

The problem is especially acute when it comes to hepatitis C–induced liver cancer. The Centers for Disease Control and Prevention estimates that nearly 50 percent of liver cancer cases are attributable to hepatitis C, but prisons across the country only report when people die of liver cancer, not what actually caused the cancer. Stat counted 416 deaths since 2014 that listed liver cancer as the cause of death with no additional causes; those are not included in our count of 1,013 hepatitis C–related deaths in prison.

Stat’s tallies also only include deaths from 2014 to 2019 because responsibility for collecting these data was transferred in 2019 to another office in the federal Justice Department, which is known as the Bureau of Justice Assistance.

There are growing signs that the reporting of prison deaths has worsened under the new office. The Government Accountability Office, the federal government’s oversight arm, found earlier this year that 70 percent of the records submitted to that office in 2021 were incomplete. The Department of Justice itself also issued a lengthy report this year acknowledging it had limited “capacity to collect accurate and complete information.”

The Bureau of Justice Assistance declined to share more recent data.

“We know now that the Department has received underreporting of deaths in custody since late 2019,” a spokesperson said. “The Department is not releasing [death] data from this period as it is taking steps to improve the quality and completeness of state reporting.”

The reporting of deaths in custody is so shoddy that academics and advocacy groups have launched their own projects to cobble together information on how people die in custody.

“The way that we have to do it is frankly unacceptable,” said Lauren Brinkley-Rubinstein, an associate professor of population health sciences at Duke University who heads the Third City Project. “It shouldn’t fall on curious citizens to go dig and find what they can.”

Andrea Armstrong, who compiles and releases data on deaths in Louisiana jails and prisons, noted a number of shortcomings with the federal data, including that they typically are released years after deaths actually occurred and that the data do not specify the facility or even region of the state where the person died. That, she said, makes it impossible to pinpoint problematic prisons in the state.

Armstrong’s project, which also memorializes people who die by name, also couldn’t be compiled using the federal data because the federal government doesn’t release identifiable information about those who died in custody. Her team relies on media reports, litigation, and public-record requests to get this more detailed information.

“We made that commitment to say the names out loud, and therefore some of the other datasets [wouldn’t work],” Armstrong, a distinguished professor of law at Loyola University New Orleans, explained.

Some of the privacy around deaths in custody is supposed to protect people’s personal health information. Under the federal privacy law, known as the Health Insurance Portability and Accountability Act, information about a person’s health is confidential for fifty years following their death. States like Texas, which report the cause of all prison deaths, are able to disclose this information because their state legislatures have passed specific laws allowing them to do so.

Privacy lawyers say it’s reasonable, generally, for states without clear-cut laws to be cautious about disclosing anything that could be considered protected health information because they could be dragged to court for an invasion of privacy.

“You can’t unring the bell if [private information] leaves and you shouldn’t have let it go,” said Barry Herrin, a health privacy lawyer, who noted officials usually won’t give up potentially protected information unless someone sues for it.

But there are ways to disclose why a person died without divulging identifying information. States like California, for example, release a yearly report outlining how many people die of specific medical conditions in the state, including hepatitis C. That sort of disclosure, HIPAA experts told Stat, would not violate privacy rules.

“You Want to Give Life”

Warren, Maine—For the prisoners who receive it, hepatitis C treatment is more than a cure. It offers a second chance, an opportunity to live long enough to get out of prison and become a productive member of the community.

Take Mathiew Loisel, thirty-seven, who was cured of the hepatitis C virus at the Maine State Prison in the spring of 2021. Just a few years ago, Loisel was cycling in and out of solitary confinement, much in the way he cycled in and out of foster homes and then psychiatric facilities. Then, jail and prison, on and off, for trespassing, criminal mischief, parole violations. Now he is serving thirty years for murder after he shot a man during a robbery.

But he earned a college degree in prison and is eyeing online business and law degrees he could put to use when he’s out, in 2034. He already has some legal experience—he’s actually the reason why Maine is treating hundreds of incarcerated people for the virus. He successfully sued the state in 2019 to challenge its policy of treating only the sickest individuals in its care.

“I have taken a life,” Loisel told Stat in the summer of 2021, sitting in the visiting room at the Maine State Prison. “At some point, you want to give life.”

Treating people with hepatitis C while they’re in prison makes sense from a public health perspective. It is perhaps the most opportune time to reach an often transient and uninsured population and ensure they take every dose of the daily medication. But it also presents a chance to help people reenter the outside community healthier than when they entered prison.

“These are all human beings who deserve the best we can find to help them stay healthy and resume—hopefully—a normal and productive life once they’re released,” said Francis Collins, the White House science advisor. “That’s what public health is all about.”

In 2018, Loisel was one of just a handful of men incarcerated in Maine to earn his associate’s degree. Soon after came his bachelor’s degree, which he finished with a 4.0 grade point average.

He’s a self-proclaimed autodidact and an eclectic reader. When he spoke with Stat, he brought along books by Karl Marx and Princeton psychologist Daniel Kahneman. He’s an avid writer, of treatises on the prison system and the values of dog training, of love poems, and of essays on his struggles with ADHD.

“What I once was is not the same as the person I now am today,” Loisel wrote in one poem.

“I now am a resilient, determined and unstoppable force to be reckoned with.”

At six-foot-four, with a voice that can match the pitch and power of a boat horn, Loisel is an unmistakably positive presence in the 900-person maximum security prison, the largest in the state.

“He’s actively engaged in good work inside the facility,” said Ryan Thornell, deputy commissioner for the Maine Department of Corrections.

Loisel says it was the grace he felt at Riverview Psychiatric Center that helped him turn his life around. Maine State Prison officials sent him there soon after he was charged with murder.

Riverview was more focused on rehabilitation than punishment, unlike the jails and prisons Loisel had come to know. There, a bad day was just a bad day. It didn’t mean another trip to the segregation wing, where cells were the size of a walk-in closet. Where protests and self harm often led to blood, urine, and toilet water seeping into the hallway from the cells around him.

“I know now how important it is to have that help, and that nurturing, and that care,” Loisel said. “I want to be a person who can use that experience … to use that to create some sort of reform or change to help others.”

When he returned to the Maine State Prison, Loisel began taking college courses, training therapy dogs, and teaching English and math to other incarcerated people.

He’d work in the Maine State infirmary, a quiet sanctuary tucked into a corner of the prisons’ medical wing. There, the prison bunks are replaced with hospital beds, and the walls are painted to resemble the log cabins in the woods of Acadia National Park, eighty-five miles north. The experience, he insists, strengthened his resolve to fight for better health care services in prison.

“When you watch men die because of a lack of services … it strengthens your convictions,” Loisel said.

Loisel came across a copy of Prison Legal News, a monthly publication by the criminal justice reform nonprofit Human Rights Defense Center that is circulated in many prisons. One article described how incarcerated people in Florida and Tennessee had successfully sued to challenge their state’s rationing of hepatitis C care.

He decided to follow their lead.

Like many in prison, he filed his first lawsuit without the help of an attorney. He finally found one, Miriam Johnson, by literally going through the phone book. Johnson had never represented an incarcerated person in a civil rights case, but Loisel’s encyclopedic knowledge of the law convinced her to help him.

“I got off the phone with Mathiew, and I think I said to my colleague, ‘I just talked to someone at the Maine State Prison and he knows more about this particular issue than when I typically deal with a forwarding attorney, and I’m looking at this and I think he might be right,’ ” Johnson told Stat.

The Maine Department of Corrections ignored Loisel’s lawsuit for three months. Once lawyers were involved, the case settled relatively quickly.

The quick resolution was influenced by the political climate in the state: Maine had just elected Democratic governor Janet Mills, replacing Republican governor Paul LePage, who just a year earlier had pledged to go to prison himself before expanding health care to the state’s poor.

“Governor Mills came in with a very aggressive and forward-thinking public health approach,” said Thornell, the DOC official, who was appointed during the LePage administration. “That’s what made it possible here—in her administration—where it may not have been as possible in other administrations.”

After the settlement in February 2021, the prison system began testing every person booked into custody for the virus, unless they refuse, and nearly everyone with hepatitis C is eligible for treatment.

Maine treated 205 men for hepatitis C drugs in 2021—including Loisel.

For him, the treatment was simple: he took a daily walk from his cell to the pill line in the main building. He’d get a cup of water from the fountain, retrieve a yellow tablet from the pill officer behind the plexiglass window, and swallow it. He’d open his mouth to prove he’d taken it and then go back to his daily routine. Within six weeks, he was cured.

Even now, Loisel isn’t quiet about his frustrations with prison life.

Sitting in a multipurpose room one afternoon, not more than a few yards away from the warden, he sounded off to Stat about the injustices of the criminal justice system and his negative experience with a prison clinician who’s related to Maine’s corrections chief.

He only paused when his attorney arrived; he couldn’t wait to speak to her about a document he was being asked to sign that would have released the prison’s health-care provider of any liability as part of his settlement.

“I’m not quite satisfied,” Loisel said. “It’s hard for me to enter into any agreements or settlements that may further restrict people from pursuing justice.”

That zeal explains how Loisel has become a vocal and engaged member of his own legal team, even without a law degree. His lawyers regularly send him legal filings to review before they file them with the court. In 2019, a judge even agreed to bus him to the federal courthouse in Bangor, seventy miles to the northeast, to take part in the formal settlement negotiations for his case.

It explains, too, his plans to go to law school. He’s now applying to MBA programs, but after that, he’s eyeing a legal career.

Maine allows certain convicted felons to practice law—and he already won his first case.