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The final years of Carl Hoffer’s life were, in his words, “living hell.”

His legs were so swollen they’d crack and leak white fluid. When he was hospitalized in August 2016, hospital staff used a needle to drain 7 liters of fluid from his abdomen.

By the end, he could only move with the help of a wheelchair, and he’d often have accidents because he lacked the energy to get to the bathroom.

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“On Saturday, I soiled myself (mostly urine) three more times … I was too weak to even move around on my bed. For the next six days lived under a pile of filth. Rather than help me … my plight was ignored for all that time,” Hoffer wrote in a letter from a Florida prison on Jan. 17, 2018.

Hoffer should have been one of the first people on the Florida Department of Corrections’ list to receive transformative hepatitis C treatments when they hit the market in late 2013. Instead, after requesting the medication repeatedly, he had to sue to get it. And while the first judge who heard his case agreed that he was suffering cruel and unusual punishment, ordering Florida to treat everyone in its custody with hepatitis C, the state appealed — and won.

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Hoffer’s story — and the legal system’s back-and-forth decisions in his case — underscores how difficult it is to establish that prisoners have been denied their constitutional right to health care. Though the medical community universally agrees that people with hepatitis C should be treated with the new class of curative drugs as soon as possible, the judicial system is struggling to keep up with the rapid advances in liver care over the last decade — especially when it comes to incarcerated people.

“It was such a remarkable medical breakthrough, and it is taking the courts time to catch up with the medical field,” said Jennifer Wedekind, a senior staff attorney at the American Civil Liberties Union, who has litigated prisoner-led hepatitis C lawsuits.

A former U.N. official even told STAT that the egregious denial of care for incarcerated people like Hoffer may constitute torture — meaning that pain was inflicted on a person intentionally — though such determinations usually require a trial.

“If the warden is made aware of the situation, is made aware of what services … are available and still the inmate is denied those services, then it could very well rise to the level of torture,” said Juan Méndez, a former United Nations special rapporteur on torture and other cruel, inhuman, and degrading treatment or punishment.

Even if prisons’ actions don’t meet the standard for torture, they are likely violating other international protections for incarcerated people, according to Ranit Mishori, a senior medical adviser for Physicians for Human Rights.

“These individuals’ human rights are being violated,” she said.

There’s no clear trend in how the justice system is approaching a prisoner’s right to hepatitis C medicines. Nearly every time prisoners have banded together with the help of a lawyer and sued for access to the treatment, the cases have settled, making it more difficult to know for sure where courts might land on the question. In certain cases, the judge hinted that the prisoners’ claims had merit, but others provided little sense of where they would have come down on the legal questions.

There’s been a number of major setbacks for prisoners as well. A district court judge in Florida found that the rationing of hepatitis C care was unconstitutional, only to have an appeals court overturn the ruling. District judges in Tennessee and Kentucky have ruled the rationing is OK, too.

The law in this arena centers on a 1976 Supreme Court case, Estelle v. Gamble, which established that any “deliberate indifference to [prisoners’] serious medical needs” was an “unnecessary and wanton infliction of pain,” and therefore a violation of the Eighth Amendment.

Legal advocates interviewed by STAT were definitive: Denying hepatitis C drugs to prisoners constitutes the type of deliberate indifference the Supreme Court sought to avoid.

Judges who ruled against prisoners took the view that testing and monitoring of hepatitis C constitutes treatment for the virus — and thus denying new medications isn’t unconstitutional. Testing and monitoring was the typical treatment for most hepatitis C patients two decades ago, when the then-primary treatment, interferon, came with a raft of dangerous side effects. Back then, the American Association for the Study of Liver Diseases only recommended that people with significant liver damage be treated for the virus.

But in 2022, no one recommends that people with hepatitis C wait to get treatment. The AASLD and the Infectious Diseases Society of America now recommend that nearly everyone with hepatitis C be immediately treated with the drugs that incarcerated people are seeking.

The legal advocates argued, too, that the standard prisoners have to satisfy to challenge prison medical policies makes it exceptionally difficult to win in court.

“The Eighth Amendment standard for a medical care claim is very, very burdensome, it’s very very difficult to meet, and it goes above and beyond medical malpractice,” said Samuel Weiss, the executive director of the advocacy group Rights Behind Bars.

Weiss explained that prisons can usually win these cases by simply claiming that their doctors disagree with their patients about the best way to treat hepatitis C.

That’s exactly what happened in Kentucky.

In February 2018, Kentucky’s top prison doctor testified that he had treated just 55 people for hepatitis C since curative drugs hit the market four years earlier. Federal judges were convinced that the state’s “treatment policies and protocols are objectively reasonable and are the result of subjective medical judgment.”

Gregory Belzley, the attorney who brought the Kentucky case, described the courts’ decision as: “If a [nurse] sticks you with a needle to determine how bad your condition is, that’s treatment.

“As a human, I find it abhorrent,” Belzley said. “Thousands of people who are entitled, under the prevailing standard of care, to treatment … are not going to receive treatment, just simply because they are prisoners.”

Carl Hoffer's handwritten will
Hoffer hand wrote a will for his family from prison

Realistically, Hoffer had virtually no chance of ever having a life on the outside. He was sentenced to life in the 1970s after he committed a string of crimes including a robbery, an escape from jail, and a murder.

Hoffer had made a life in prison. He’d sell cups of coffee for $0.70 apiece. He’d bet on the Celtics and the Patriots. And most of all, he’d keep up with his family by writing his stepson Patrick, who shared some of those letters with STAT.

When Patrick’s son Alex was born, Hoffer, a semi-professional R&B singer, wrote a song and sang it to Patrick’s answering machine. He’d write home to suggest coming-of-age rituals for Patrick’s teenage daughter, Livia. “You guys and the boys could present her with a family official token of womanhood, perhaps a claddagh ring,” he wrote on Feb. 12, 2017. He’d ask Patrick about his mother, who he had lost touch with over the years.

“If he saw a Brinks truck and the door was open and there was a bag of money, he’d take it. But he was also the kind of guy who would intervene if there was a domestic dispute,” said Patrick Fontaine, Hoffer’s stepson. “His heart was always in a good place.”

Hoffer finally did receive treatment for his hepatitis C in 2017, right before the first federal judge ruled in his favor, forcing Florida to treat all incarcerated people in the state. The judge wrote about Hoffer specifically, saying he “should have been treated … certainly by 2014.”

But Hoffer’s liver was too far gone. By January 2018, his condition had drastically deteriorated. He scribbled out a one-page will and sent it to his stepson.

“I love you, love you, love you,” it began.

Two months later, on March 21, he was pronounced dead.

“Carl left behind the problems he had faced in the prison system and there is something that must be done to create a system that is fair,” Hoffer’s granddaughter Livia wrote in a high school essay the day after Hoffer’s death. “His experience within the [prison] system was unfair and sickening to anyone on the outside looking in.”

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