Hepatitis C 'epidemic' largely untreated in Tennessee prisons

• Health experts say the number infected probably is higher because prisons test only a handful of inmates.
• Of the 901 inmates tested in 2015, 424 tested positive for hepatitis C.
• The pill that can cure the eight inmates who are receiving it is expensive: A full regimen can cost $84,000 or more to treat one patient.

Editor's note: This is part one of a two-part series focusing on hepatitis C in Tennessee prisons. Part two focuses on the public health impacts of treating prisoners infected with the disease, and a prison policy that leaves some victims in the dark. 

John Bilby should be dead by now.

Before September, the 66-year-old inmate didn't know about the hepatitis C that's slowly destroying his liver. Then, after 27 years in prison, they told him he had six months to live.

"He says I have (terminal cirrhosis of the liver) and without a liver transplant I will die," Bilby said in a letter to The Tennessean, referencing a recent conversation with a prison doctor.

Bilby's asked for treatment, but he's one of thousands who've been denied.

Only eight of the 3,487 inmates known to have hepatitis C in Tennessee prisons are receiving medicine that can cure the disease, caused by a virus that can lead to fatal liver damage. Nearly one in two inmates the state did test in 2015 showed signs of having hepatitis C.

Similar circumstances across the country have led to class-action lawsuits from inmates in three states. The inmates and their attorneys in those cases argue the state is failing to provide reasonable medical care by refusing to give the medications that could cure hepatitis C to most infected inmates.

Health experts and prison advocates say the number infected in Tennessee probably is higher because prisons test only a handful of inmates and most people infected, inside or outside prison, have no idea they're carrying hepatitis C. Centurion of Tennessee, the prison system's health care provider, acknowledged hepatitis C reached "epidemic" levels in prison as early as August, according to documents obtained by The Tennessean.

The state's chief doctor in charge of tracking infectious diseases says hepatitis C is at epidemic levels outside prison as well. State prison officials know they have an epidemic on their hands, but are not taking steps to actually tackle the problem.

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Hepatitis C: What is it, and how is it treated?

Hepatitis C experts and a former nurse practitioner in a Tennessee prison believe they know why Tennessee prison officials, and prison officials across the country, refuse to test all inmates: Acknowledging inmates have the disease means they must treat it.

“Because treatment is expensive and prison budgets are often limited, there could be an incentive not to test for (hepatitis C)," reads a 2015 study on hepatitis C in prison funded by the National Institutes of Health.

Put another way, "the concept there is 'don’t ask, don’t tell,' " said Dr. Arthur Kim, an assistant professor of medicine at Harvard Medical School and a national expert on the treatment of hepatitis C.

Of the 901 inmates tested in 2015, 424 tested positive for hepatitis C, said Department of Correction spokeswoman Neysa Taylor. There are more than 20,000 inmates in state prisons, with almost 11,000 inmates admitted and 5,754 released during the 2015 budget year. By any standard, thousands of inmates are going untested while nearly half of the small number who are tested show signs of having the disease.

Taylor said the department monitors inmates who may have hepatitis C, but she didn't answer questions about how many inmates are tested in years before 2015 or how many have died from liver disease. The department's treatment guidelines she provided The Tennessean are outdated compared with advice from leaders in the field.

In February a national hepatitis C guidance panel, composed of hepatitis C experts from across the country, issued new guidelines on treating hepatitis C. The department references the panel's guidance, but it still practices methods that are no longer recommended.

"The guidance simply believes that virtually all patients infected with hepatitis would benefit from a cure of this infection. Therefore, the panel does not believe restrictions based on fibrosis score (level of liver damage), based on recent drug use, based on other, life-threatening conditions, should be major factors in those decisions," said Kim, who also serves as a co-chairman of the panel.

'Our job is not to punish'

Bilby is incarcerated for a reason: He pleaded guilty in 1989 to aggravated rape, kidnapping and assault with intent to commit murder. Tennessean reports from the time say Bilby abducted and sexually assaulted a female real estate agent after posing as a prospective homebuyer, then fought with law enforcement, including grabbing a gun belonging to the son of a police officer trying to arrest him, before he was subdued.

He was sentenced to 50 years. He wasn't sentenced to death, and like every other inmate in the U.S., Bilby has a constitutional right to medical care.

The pill that can cure the eight inmates who are receiving it is exceedingly expensive: A full regimen can cost $84,000 or more to treat one patient. Even if the Department of Correction spent all of its nearly $1 billion budget on treatment, there's no guarantee that would cover treatment costs for every infected inmate.

Administrators always grapple with costs. But Donald Willie, a former nurse practitioner who worked in a West Tennessee prison for 14 years, hinted there could be other motives beyond avoiding pricey medications.

"There are a lot of these contractors that think they’re part of the punishment of the inmates. That's something I've been against since the very beginning," Willie recently told The Tennessean.

"Our job is not to punish the inmates but to provide, maybe not the highest quality care, but good, sound care."

Kim agrees cost is a serious problem for prison systems across the country. But the threat hepatitis C poses is greater.

"I express sympathy for prisons because they do have limited budgets in which to work. It's clear that mass treatment would exceed those budgets," Kim said.

"However, the opportunity for treatment on a mass scale for both prevention of future liver disease as well as the potential for transmissions ... in the community is immense, if one thinks about the potential to treat while incarcerated."

Centurion and the system

In the fall of 2013, private health care contractor Centurion took control of health services in all of Tennessee's public prisons with a five-year, $270 million contract.

Centurion has cost-saving objectives: It must cut down on the rate of emergency room visits and prescriptions issued every year by 20 percent. There also are built-in penalties for noncompliance: Every time an inmate is sent to the emergency room without department approval, Centurion can be fined $1,500.

The new company recognized hepatitis C was going to be a "cost driver," according to hundreds of pages obtained by The Tennessean through an open records request.

For a time Centurion and the department flirted with the idea of testing every patient, said Willie, who worked at West Tennessee State Penitentiary in Henning. But that effort faded, as it had under previous health care contractors.

"It's a system that is set up for failure," said Willie, who worked at the facility about 50 miles north of Memphis from 2001 to September.

During his last five or six years at the prison — with Centurion overseeing health services at the facility during part of that time — Willie handled inmate intake. Sometimes he'd provide 20 physicals a day, assessing inmates' medical histories and suggesting treatment plans. Periodically, as a new medical contractor would take over health services, Willie says there would be a new push to test for hepatitis C for all incoming inmates.

"We started for a while doing a hepatitis panel on everybody. And we stopped that because we found out there were too many people who had hepatitis C, and then if you’re going to do that, you’re going to have to do something about that," Willie said.

Department spokeswoman Taylor didn't answer questions about how the state or Centurion determines which inmates to test. But she said a positive test result doesn't necessarily mean an inmate actually has hepatitis C.

Kim, who also serves as director of viral hepatitis at the Division of Infectious Diseases at Massachusetts General Hospital, said some people who've beaten the disease may still have traces in their body, but the "majority" who test positive have hepatitis C.

It's impossible to know how many people are infected if there isn't widespread testing. Dr. Cody Chastain, an assistant professor in infectious disease at Vanderbilt University, said 20 percent to 30 percent of patients may spontaneously clear the disease, but agreed with Kim that most patients do not.

At what cost?

For years, treatment for hepatitis C meant suffering through flulike symptoms for weeks with a 50-50 shot the treatment would work. Sovaldi and similar medications such as Harvoni cure more than 90 percent of hepatitis C patients while causing minimal side effects and require only a daily pill regimen, Kim said.

That change represents a massive breakthrough in treatment, said Peter Erlinder, director of the International Humanitarian Law Institute based in Minnesota.

"This is a disease that up until 2013 was an incurable disease that was very likely a death sentence for a significant number of people who had it. It no longer is," said Erlinder, who also serves as an attorney representing inmates suing for the treatment in Minnesota.

Tennessee spent $30 million on Sovaldi and Harvoni for 342 Medicaid patients who had hepatitis C in 2014, more than any other medication, according to a U.S. congressional study published in December. In comparison, Centurion reported spending $568,000 on hepatitis C treatment for public prisons in 11 months of 2015. Data for costs in February 2015 was requested but not provided to The Tennessean. By the end of the year there were 2,794 inmates in Tennessee's public prisons with hepatitis C, which doesn't include hundreds more housed in prisons run by Corrections Corporation of America.

The fact people can live with the disease for years without showing visible signs opens the door to institutions treating the most severe cases first, said Dr. Tim Jones, the state epidemiologist with the Tennessee Department of Health for the past seven years. It's not a perfect system, but he thinks it's a system based on reality.

"If we had our choice, just about everyone with hepatitis C would be treated," Jones said.

​"The problem is the cost. And as painful as it is to say, even in our wealthy country with a great medical system, when you're talking about costs at this height you just can't ignore them."

But testing, at least initially, is considerably cheaper than treatment, said Chastain, who runs a clinic at Vanderbilt that focuses on helping Tennesseans who have hepatitis C. The initial tests can cost as little as $20 to $30, Chastain said, noting there can be a difference between a bulk price versus what a patient may actually pay. Secondary testing to confirm a patient has hepatitis C is more costly, Chastain said.

It's not the patient's fault if tests or medication are expensive, Erlinder argued. Doctors in prisons or elsewhere should base their diagnosis on sound medical practice, not price tags.

"There isn’t a doctor in the state of Tennessee who will say it’s proper medical practice to take into consideration that taking out an appendix depends on whether the patient can afford it or not," Erlinder said.

For Erlinder, the argument comes down to providing the cure because it's the reasonable standard of medical care as recommended by Kim's guidance panel. In Centurion's contract, in Tennessee and other states, it is required to ensure all services "at a minimum, meet the generally accepted standards of medical care."

"What are the doctors doing who are responsible for prescribing these drugs if they aren’t doing what this guidance panel says?" Erlinder said.

The last burden

At the end, Centurion and the state favored the cost-cutting approach too often over the patient's best interest, in Willie's opinion. He left his job at West Tennessee about six months ago.

"It was a bottom line thing, and people were dying," Willie said.

Inmate John Bilby wants any care he can get. Although Bilby says his doctors told him he's too old or sickly for the medication, in theory, the guidance panel suggests not using the treatment only when a transplant or other procedure wouldn't help. He's filed a grievance, but he hasn't received favorable news; Centurion data shows the vast majority of medical grievances are rejected.

Patricia Lamberth, Bilby's sister, recently said her brother was transferred to Trousdale-Turner Correctional Center, the new CCA-operated prison, for about three weeks before being transported back to Turney Center.

The private prison operator doesn't use Centurion for its health care needs. Spokesman Jonathan Burns didn't tell The Tennessean what company it does use, but said "CCA follows TDOC policy and treatment protocols related to hepatitis C in all our Tennessee facilities."

A letter Rep. Bo Mitchell received from state officials said as of March, 711 inmates infected with hepatitis C are housed in CCA facilities.

Bilby is up for parole in December, but he expects to leave prison before then. He'll either get the medical furlough he's requested or he'll leave in a coffin.

Either will be the latest, and last, burden for his family. The broader burden hepatitis C presents for Tennesseans will live on.

Reach Dave Boucher at 615-259-8892 and on Twitter @Dave_Boucher1.