On May 15, 2017, after serving 37 years, David Maldonado was released from prison. He had been sentenced to life for a murder he committed when he was 16. But for Maldonado, getting out was about more than freedom; his release might have also saved his life. In 1997, Maldonado was diagnosed with chronic hepatitis C—a disease, now curable, that the state of Pennsylvania had refused to treat. “Society really didn’t care whether I lived or died,” he told me recently.
Hepatitis C is caused by a virus that infects and inflames the liver; it’s spread through blood, most often via intravenous drug use. Between 75 and 85 percent of those infected with hepatitis C develop chronic hepatitis C, which can lead to liver scarring, liver cancer, cirrhosis, and death. It’s the most deadly infectious disease in the United States, killing around 20,000 people a year—more than the next 60 infectious diseases combined.
Prisons are at the epicenter of this epidemic; an estimated 20 percent of incarcerated individuals carry the virus, compared to about 1 percent of the general population, according to American Association for the Study of Liver Diseases and the Infectious Diseases Society of America (AASLD/IDSA).
“A huge concentration of people who have it are [incarcerated], and if we don’t cure people in prison, then they’ll be released and it will make it more prevalent on the outside of prison,” said Mandy Altman, the director of the National Hepatitis Corrections Network, an organization that provides hep-C resources to those working in jails and prisons.
In 2011, the Food and Drug Administration started to approve direct-acting antiviral (DAA) medications, which now have a more than 95 percent success rate. The medications have few side effects and require taking as little as one pill a day for eight to 12 weeks. Previous medications cured about half of those who were treated, required weekly injections for months, and could have fatal side effects. Yet, despite having a cure, about 97 percent of prisoners with hep C have not received treatment, according to a survey released last year.
Maldonado told me that he first learned of the cure when he saw a TV commercial. But when he asked the Pennsylvania Department of Corrections (PA DOC) for DAAs, he was denied: “I said, ‘My sentence is life imprisonment, not death.… You’re going to let me die from this.’”
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While Maldonado was incarcerated, he wrote several handwritten pleas to prison officials. “I’m serving a life sentence so I don’t have the option of getting out and seeking treatment at other places,” he wrote in 2015. PA DOC responded that the drug had not yet been approved for use by the Bureau of Health Care Services, a PA DOC entity that oversees medical, dental, and food services.
Maldonado’s correspondence echoed the words of US Supreme Court Justice Thurgood Marshall: “An inmate must rely on prison authorities to treat his medical needs; if the authorities fail to do so, those needs will not be met.” In 1976, Marshall wrote for the majority in Estelle v Gamble that “deliberate indifference” to prisoners’ serious medical needs constituted cruel and unusual punishment.
Maldonado joined a class-action lawsuit, filed in 2015, against PA DOC, challenging the denial of DAAs to nearly all inmates with chronic hepatitis C. On November 19, a proposed settlement agreement was announced that would greatly expand access to DAAs for Pennsylvania prisoners. The judge has granted preliminary approval, and a hearing is scheduled for February 5, 2019.
“I’m glad the guys in prison are going to get treated. They deserve it,” Maldonado told me. He said he hopes that “they didn’t wait too long for some.”
In December 2018, out of 4,863 prisoners who had been diagnosed with chronic hepatitis C in Pennsylvania, only 130 were receiving DAA medication, according to PA DOC spokesperson Amy Worden. Under the new agreement, Worden wrote in an e-mail, “the DOC commits to continue to expand DAA medication treatment to eligible inmates in the earliest stages of infection…over the course of the next three years.”
The settlement deal stipulates that prisoners can receive DAA medication if they have at least one year’s life expectancy and at least 20 weeks until their release date. Su Ming Yeh, deputy director at the Pennsylvania Institutional Law Project, one of the firms that filed the suit, said she expects about 5,000 individuals will now be cured.
Guidelines set by the AASLD/IDSA recommend early treatment for chronic hepatitis C in nearly all cases. “Universal treatment should be the standard for correctional systems,” said Yeh. “It’s smart correctional policy to treat everyone.”
Prior to the settlement, Pennsylvania limited treatment to those who suffered from severe complications. In January 2017, a federal district judge condemned these practices in a case brought on behalf of activist Mumia Abu-Jamal, who had chronic hepatitis C and is serving a life sentence.
“The Hepatitis C Protocol deliberately delays treatment for hepatitis C,” Judge Robert D. Mariani wrote in his order requiring that Abu-Jamal receive DAA medication. “Defendants, pursuant to DOC policy, deliberately chose a course of monitoring over treatment for nonmedical reasons and are allowing Plaintiff’s condition to worsen while his liver function and his health continues to deteriorate.”
Since 2015, PA DOC has treated 650 people with DAAs—with the average per-patient treatment now costing about $20,000, according to Worden. When the medications first became available, it could cost upward of $94,000 to treat one person. With increased competition and negotiations between the department and the drug companies, the price dropped for PA DOC patients, Worden said. Costs are expected to keep falling, but it’s undeniably a significant expense for prison systems.
The unwillingness to cure people is often attributed to the high cost as well as the stigma associated with hepatitis C. But Maldonado is not alone in fighting for treatment. Across the country, prisoners and their attorneys are going to court to demand access to DAAs. Settlements in Massachusetts and Colorado, as well as a court order in Florida, have all mandated increased access to medication for prisoners. In December, a US appeals court upheld a lower court’s ruling that found that prisoners with hepatitis C constitute a class in a suit against the Missouri Department of Corrections.
This past summer, attorneys DeVaughn Ward and Kenneth Krayeske sued the Connecticut Department of Corrections (CT DOC) on behalf of Robert Barfield. Barfield was diagnosed with hepatitis C in 2006 and has been incarcerated in Connecticut since 2012. His repeated requests for DAAs were denied until the suit was filed last year, according to the complaint. Since 2016, Barfield has reported a variety of symptoms associated with chronic hepatitis C: numbness in his hands and feet, weight gain, pain, and loss of hair on his legs.
The CT DOC did not respond to a request for comment, but court documents show that it prioritizes treatment for those who have already suffered liver scarring.
“The treatment of plaintiff Barfield has been consistent with the appropriate standard of care,” wrote assistant state attorneys general Steven Strom and Terrence O’Neil. “The standard of care for treatment of HCV [Hepatitis C Virus] in correctional settings is not based on any one set of guidelines.”
Delaying treatment for hepatitis C, the ACLU argues, causes unnecessary suffering. “No one sentenced people in prison to die from lack of medical care,” ACLU of Connecticut’s legal director Dan Barrett said. “No gavel banged and said, ‘I sentence you to a hole in which your medical needs are going to be ignored.’”
In June, the ACLU of North Carolina and North Carolina Prisoner Legal Services sued the North Carolina Department of Public Safety (NC DPS) for restricting access to DAAs. Prisoners in North Carolina, similarly to those in Connecticut, usually must suffer from liver scarring to qualify for the cure. Those with a history of mental illness, fewer than 12 months left on their sentence, a life expectancy of less than 10 years, and/or a disciplinary infraction for alcohol or drugs in the previous year are prohibited from receiving DAAs.
These restrictions, and those like it in other states, are not medically justified, according to Raymond Chung, the chief of hepatology at Massachusetts General Hospital. “The notion of applying boundary conditions on who should receive therapy is probably not well-grounded,” said Chung.
Michele Luecking-Sunman, a civil-litigation managing attorney for North Carolina Prisoner Legal Services, told me, “The standard of care is to treat hepatitis C as soon as chronic hepatitis C is identified. That standard applies to people who are in prison and people who are out of prison.”
Out of the 1,543 prisoners in North Carolina diagnosed with chronic hepatitis C as of April 2018, about 589 had completed treatment and 72 were currently in treatment or had been approved for treatment, according to a legal filing by the NC DPS. But based on estimates of the prevalence of chronic hepatitis C, there are likely between 6,500 and 12,500 prisoners with the virus in North Carolina, according to an affidavit by Paula Smith, the former medical director for the Division of Adult Correction of the NC DPS.
“There are thousands of people in our prison system who have hepatitis C who don’t know it,” said Luecking-Sunman.
The undercount reflects a woefully inadequate screening process. A simple blood test is all that’s required to test for hepatitis C. The NC DPS policy currently advises health-care practitioners in the prison to “discuss risk factors and if present, consider testing for hepatitis C.” The policy, however, does not specify when or how often this discussion will take place. NC DPS deputy communications director Diana Kees declined to comment on their hep-C treatment protocol, citing pending litigation.
NC DPS’s practices appear to ignore the recommendations of the Federal Bureau of Prisons and AASLD/IDSA, which state that prisons implement a universal opt-out testing policy. Adopting this strategy nationwide, according to AASLD/IDSA, would prevent more than 11,000 liver-related deaths over the next three decades.
To slow the spread of hepatitis C in the United States, people in prison must be screened and treated. “This represents a golden opportunity to try to contain the epidemic, identify cases, and treat them, and, at the same time, help to stem the spread of the infection,” Chung said.
Altman from the National Hepatitis Corrections Network emphasized that treating the prison population as somehow separate from the general population is a mistake. “There’s no difference between people in prison’s health and the health of our country. It’s the same people,” she told me.
Maldonado said that the core problem was that so many people refuse to see prisoners as humans. Maldonado now lives in Philadelphia, where he works as a case manager for the homeless. The settlement in his case, he said, is welcome news for those still incarcerated. For him, treatment made all the difference: “They consider me cured. I don’t have to worry about dying from this.”
