Sick on the inside 

Hundreds of Montana State Prison inmates are infected with hepatitis C, and hundreds more are at risk. This October, for the first time, a handful will receive treatment from the state. What about the others?

Deer Lodge inmate Daniel Loween becomes animated discussing Viktor Frankl’s Man’s Search for Meaning. He leans forward in his chair, then back, hands gesturing, attempting to illustrate the book’s abstract ideas. Man’s Search for Meaning is a Viennese psychiatrist’s recounting of experiences in Auschwitz that led him to develop an existentialist approach to psychotherapy. It’s also about the search for a reason to live.

A friend and teacher of Loween’s at the Montana State Prison, where Loween is serving a sentence for check fraud, gave him the book a few weeks ago. Every word has had an impact, Loween says, but the section on indeterminacy has really got him thinking. It’s set him to wondering not only about how long he’ll be locked up, but also about an illness he may or may not have—hepatitis C.

“The thing that struck me the most was that indeterminate thing,” he says. “Here you are in a concentration camp, living from day to day, and you don’t know if you’re getting out or if you’re going to die or if the Allies are coming. It’s uncertain. And that’s the worst thing about this place, and about not knowing if I have hep C.”

Loween’s been tested in prison. His urine has been screened. Levels have been checked. All the results indicate that something is fishy with his liver, but the evidence stops short of confirming hepatitis C.

Loween wants a definitive answer, wants to have a liver biopsy, wants his viral load measured, something conclusive. So far his requests to prison officials have played out like a Ping-Pong grudge match. Loween writes to the infirmary demanding information. The infirmary replies without including the information he wants. He writes again with the same request.

“I would just like to know if hep C is a life threatening illness, and if so, why am I being denied treatment?” Loween wrote on one request.

“We are not doing hepatitis C treatment at MSP for anyone, if you become ill let us know,” came the reply a week or so later.

“Should I infer from this that having hep C is not the same as being ill?” Loween shoots back. “Why aren’t prisoners with hep C being monitored to be sure that the virus is not progressing to life threatening levels?”

Neither of those questions received a reply.

If Loween could confirm that he is sick, he’d be entitled to free treatment from the Veterans’ Administration. Loween is petitioning for a medical parole so he can be tested by the VA and, if need be, treated. The free VA treatment should act as leverage in getting his parole granted—after all, why would the state want to spent thousands of dollars on him, when free treatment waits on the outside, he says. But so far, the parole board hasn’t taken him up on the offer.

In the meantime, Loween keeps filling out medical forms and getting slow or no replies. His frustration has begun to boil.

“Jesus Christ, they have the money to test my piss for drugs, but not my blood for a killer disease,” he says.

The hepatitis C virus was discovered in the late ’80s, and over the next decade was confirmed as the most common chronic blood-borne infection in the United States. The Centers for Disease Control in Atlanta estimates that during the ’80s, an average of 230,000 new infections occurred every year, and that more than four million Americans have been infected with the virus.

Those infected are at risk for chronic liver disease—the 10th leading cause of death among adults in the United States, accounting for about 25,000 deaths annually. The disease can also cause a loss of energy and collapse of the immune system. For inmates, many of whom are also infected with HIV and/or hepatitis A and B, hepatitis C can be the last nail in the coffin.

The infected population serves as the primary source of transmission to the uninfected. Although it can be spread sexually, and from mother to child during birth, both are rare. Most often the sharing of drug or tattoo needles transmits the disease, especially in the prison population.

Until the mid-’70s, prison medicine was a luxury, and diseases like hepatitis went untreated and unchecked. But after prison riots and lawsuits brought poor prison conditions into the public eye, medical treatment on the inside began to change. By the late-’70s, American prisons were required to provide some level of medical care. But this didn’t mean that inmates would be treated for just anything. Hepatitis C in prisons throughout the country continues to go largely untreated. While a few states have begun treating inmates, there is no national screening or treatment policy.

Because hepatitis C is contagious even while the illness is in remission, and because most inmates will be released eventually, the 98 percent of the general population without hepatitis C is at risk of contracting the disease from the estimated 40 percent of former-prisoners with the illness.

“This isn’t one of those, ‘oh us poor mistreated prisoners, we have it so bad,’ types of things,” says Loween. “The point is we are people, and 99 percent of us are going to be back out there, and we’re all susceptible to infectious diseases.”

The Centers for Disease Control has issued guidelines for prisons across the United States to deal with what the Center considers one of the primary public health crises in the country. The Center advocates that prisoners whose habits put them at risk of contracting hepatitis C should be vaccinated against hepatitis B, since there’s no vaccination for hep C, and the combination is deadlier than either variant alone. The CDC also recommends that inmates with risk factors should be tested for infection, with those who test positive evaluated for chronic infection and antiviral treatment.

“What we recommended in terms of hepatitis C was that basically [inmates] should be able to receive the same care as they would if they were in the community,” says Dr. Cindy Weinbaum, CDC epidemiologist and lead author of the guidelines. “The same standard of care should be applied inside the prisons as is outside.”

But like federal prisons, state facilities have been slow to acknowledge the problem. Phyllis Beck, director of the Oregon-based non-profit Hepatitis C Awareness Project, spends much of her time tracking individual states’ progress on curbing the explosion of hepatitis C in the prisons. She’s been gathering information on all the lawsuits filed by inmates against the states, but says that there are just too many. Beck says that no state is exempt from the problem, and she wouldn’t be surprised if every state had an active suit.

Prisons from New Jersey to California have taken heat for downplaying the rates of hepatitis in the incarcerated population. During the past year, amidst the lawsuits and the bad press, most states have begun to draft plans for dealing with the emerging epidemic.

Earlier this month, Montana Department of Corrections Medical Director Dr. Liz Rantz met with other prison medical directors from around the country to discuss options. Under new protocol adopted by Rantz and most of her peers, Montana inmates will be granted hep C antibody tests upon request. But that test provides only evidence of exposure, not the conclusive (and more expensive) diagnosis that Loween wants.

Another part of the new protocol will identify inmates who might be candidates for treatment. But the plan, to be implemented in October, would only apply to three or four Deer Lodge inmates who meet the optimal criteria for treatment—including clinical signs of liver failure, anemia, low viral load HIV infection or 10-year-plus life expectancy—Rantz says. Factors disqualifying inmates from consideration include pregnancy, documented abuse of drugs or alcohol in the preceeding two years, and “history of non-cooperation with provision of other prison services.”

Qualifying and disqualifying criteria are complicated and many, but the bottom line calculation is that of an estimated 900 Montana prisoners infected with hep C, fewer than five are likely to receive treatment, according to Rantz.

Rantz admits that hepatitis C rates in the prisons are high—in the past, she’s said that 30 percent of Montana’s inmates are infected; since then, she has backed off that number and insists that the infection rate is much closer to 15 percent. In any case, she believes fear of the illness has been over-inflated. For the majority of those infected, she says, the virus will never do enough damage to cause health problems.

“They may get a little liver inflammation over time,” says Rantz. “If they drink a lot, or they take a lot of Tylenol, or have other terrible health habits, it will contribute to their progress toward what’s called chronic active hepatitis. For most people, it’s just a fact of life…Even for the people who get chronic liver disease, it’s a very slow process, sometimes stretched over 20 years.”

Rantz goes on to say that there is no way of knowing who will develop complications, which makes treating the disease tricky. The state could hypothetically put $20,000 into the treatment of an infected prisoner who doesn’t need treatment, or who won’t respond to treatment, she says.

“The old treatments were about 40 percent effective,” she says. “[At best], the new ones are about 80 percent effective. But the downside of that is that even once the virus is cleared and you stop the treatment, six months later 50 percent of the people will be re-infected.” To make matters worse, Rantz says, there’s no evidence that treating the virus can clear the disease from the body permanently.

More optimistically, many inmates cite conflicting evidence from a study done at Hannover Medical School in Germany. The study reports that quick treatment after infection can almost always cure hepatitis C. Administering interferon-a within two or three months of contraction appears to be virtually 100 percent effective in getting rid of the virus for good, according to the study. Studies of other treatment plans, applied further into the disease’s development, report an efficacy rate of around 50 percent—much closer to Rantz’ 40 percent baseline number.

Inmates’ claims for effective treatment underscore Rantz’ opinion that a lot of misinformation is out there. First off, she says, it’s not possible to know exactly when the infection sets in, and so the majority of inmates couldn’t benefit from early treatment. Secondly, Rantz says that treatment takes months, if not years, to complete, and is only effective if continued without interruption. Since many inmates bounce back and forth between the inside and outside, interruption of treatment would likely be common.

Rantz also says that treatment varies between people based on genotype. There are at least six distinct hepatitis C genotypes identified—genotype 1 is the most common in the United States. Treatment rates vary greatly depending on genotype, according to the Centers for Disease Control. Pegylated interferon and ribavirin, the latest treatment of choice, have up to a 50 percent efficacy rate for people with the most common genotype, and up to an 80 percent rate for genotypes 2 and 3, also according to the CDC.

This data bolsters the hope of Montana inmates struggling for some kind of treatment. And for Loween, it punches holes in the state’s claim that effective treatments aren’t out there.

“The Center for Disease Control is a prestigious place,” says Loween. “Let’s say someone came out here with two glasses of water, and one said certified safe by the Centers for Disease Control, and the other one said certified safe by Montana State Prison. Which one are you going to drink out of? We all have common sense about these things.”

But again, the inmates don’t have all the details, says Rantz.

Prisoner Gary Quigg knows he has hepatitis C. Quigg found out after being transferred from Deer Lodge to a prison in Tennessee. In his subdued manner, Quigg describes the moment he found out he was ill.

“The prison doctor [in Tennessee] wanted to do some blood work and I asked why. He said, ‘Well, how long have you had hepatitis?’ I told him I didn’t have hepatitis. ‘You mean they didn’t tell you?’ said the doc. ‘You have hepatitis C and B.’”

Quigg has no idea how he contracted the two strains. He speculates that he may have been infected by an old girlfriend, but admits that he could have picked it up on the inside. Quigg has a single tattoo–done with his own hand and a sewing needle, ink and thread in the mid-’70s. He says he has no idea how many people had used that same needle to ink hearts or initials into their skin before he used it. Neither he nor anyone else knew that there was any danger in sharing needles.

“It’s something we all did,” he says.

Since Quigg discovered his illness in 1997, he’s been on a quest to find treatment. He has read books and subscribes to all sorts of hepatitis awareness and treatment newsletters. He’s asked politely for treatment and he’s demanded it, but he’s had no luck. Neither have dozens of other inmates.

Terry Schatz and Quigg used to sit at the same table at the chow hall during meals, and the conversation often turned to hep C. Schatz was also infected with the virus, but he wasn’t as healthy as Quigg.

Quigg says he’s lost energy. He can’t remember things as well as he used to. Like many others infected with the virus, he calls it “brain fog.” But Schatz’ symptoms, Quigg says, were much worse.

“He said he was afraid he was going to die.”

Quigg and Schatz have more in common than just their illness. Both are plaintiffs in a case being handled by University of Montana law professor Jeffrey Renz, suing Dr. Rantz and the Department of Corrections. Quigg and Schatz aren’t the first inmates to run up against a correctional department unwilling to provide conclusive testing or treatment. In March of this year, inmate Keith Brown brought a similar case before the Montana Supreme Court. Brown claimed that he was dying a slow, painful death at the regional prison in Missoula, and petitioned the court to either impose an immediate death sentence, grant him medical parole, or order the state to provide treatment–an expensive and lengthy process.

According to Montana law, any prisoner may be examined for any sexually transmitted or infectious disease, and if infected, must be treated. On these two points alone, former Montana Supreme Court Justice Terry Trieweiler thought that the Brown case was a sure victory.

“We knew they had an obligation to treat it,” says Trieweiler. “We also knew from the information provided that it can be treated, and it was undisputed that [Brown] had hepatitis C. So I think that all the facts that the court needed were before the court.”

But a majority disagreed with Trieweiler and decided against Brown. In February of this year, a split Montana Supreme Court refused help for Brown and the rest of the state’s infected inmates.

“We recognize the seriousness of the medical issue that Brown has raised, but are unable to grant relief given the state of the proceeding before us,” said the four-judge majority led by Chief Justice Karla Gray, which was stymied by the incomplete and conflicting science of the issue. The court concluded that it is an individual prisoner’s responsibility to present conclusive evidence of appropriate treatment.

One of three dissenting justices, Trieweiler wrote that the Montana prisons were becoming “death camps.” It’s an opinion he still holds.

“They’re a captive people with a disease that, left untreated, will ultimately cause their death, or at least severely debilitate them,” he says. “To me that’s very much like a death camp.”

While the majority maintained that cost was not a factor, Trieweiler is convinced it played a role in the decision.

“I think that in light of the struggle the Department of Corrections was having with budget cuts, there wasn’t much likelihood of having more money for treatment,” he says. “I think that the people at the Department of Corrections take the attitude that they are going to apply the money where they think it’s important. And they don’t think this is important.”

Under the Department’s current budget, treatment is prohibitively expensive. Considering the estimate that more than 900 Montana prisoners have hepatitis C, and that the most effective treatment programs can run as high as $30,000 a person, it’s clear the system’s allotted $8 million total health care budget isn’t enough to handle the problem.

Not only is cost a factor in the current policy, says Trieweiler, but the high price of mounting a Supreme Court case makes it near impossible for inmates to change the system.

“That’s the other hypocritical part about the majority opinion. They send these people back to trial court to develop the factual record, which requires sophisticated representation. Not only are they not lawyers, but they are behind bars and they don’t have legal resources, so how are they supposed to develop the factual record. There’s a catch-22.”

The inmates in Deer Lodge agree with the former justice. Both Quigg and Loween fit the image of the self-educated prisoner. Their cells are filled with books and briefs, but their knowledge about the disease, its treatment and the legal system has yet to garner results. Trieweiler believes much of the problem stems from the fact that the issue revolves around prisoners. In his estimate, the state and the majority of the court believe that the incarcerated are “bad people” and need to learn to live with the illness.

So far, Quigg’s case has had only a preliminary pre-trial conference, but he is confident. Based on the 8th amendment—which includes the cruel and unusual punishment clause—Quigg hopes that he and the 30 other plaintiffs will succeed where Brown’s Supreme Court case failed.

On May 19, 2003, Schatz died. Many Deer Lodge inmates took it hard. They blamed the prison, saying Schatz needed treatment he didn’t get.

“Everyone thinks that if there isn’t any treatment, people are just going to keep keeling over,” says Quigg.

Rantz knows the inmates think that Schatz died from hepatitis, but she says that wasn’t the case.

No autopsy was done on Schatz, but Rantz says that he was sick from a life lived in poor health. Hepatitis may have complicated that, but his death was ruled the result of natural causes, she says.

In the absence of any treatment, some inmates have tried to mitigate the progression of the illness. Quigg says that he and others with hepatitis C have researched special diets they hope may slow damage to the liver.

“There are certain foods you’re supposed to avoid, and certain skin lotions with chemicals that you should avoid,” he says. “The prison never even tells you anything about what you should avoid. They’ve just got their heads in the sand and won’t address the issues.”

Quigg and others have requested special diets, but have had their requests denied. Rantz says that the Department doesn’t offer special diets because they don’t make a difference. Rantz says that this is just another example of the confusion over the illness pervading the prison population.

“These guys all have a lot of beliefs about what will help, but the thing that helps you when you have hepatitis C is not drinking, not getting HIV and living a good healthy life,” she says. “A lot of them think that they need milkweed thistle and things like that, but there is no evidence that any of that stuff helps.”

To many inmates, Rantz is the villain in all of this. She’s seen as the one withholding treatment and letting prisoners get sicker and sicker. But Rantz says that not many in the prison, or even on the outside, understand the issue. Prisoners, she says, don’t know how hepatitis C spreads, how it affects the liver or how it is best treated, and even the medical community fails to present a consensus.

“It’s a really complicated thing, and it’s very difficult to explain to somebody who just discovers that they have hepatitis why we aren’t just giving them penicillin and curing them,” she says. “If you have pneumonia, you’re sick and you go to the doctor and the doctor gives you some antibiotics and maybe some other things, and two weeks later you’re well. The pneumonia’s gone and you feel good. In the case of hepatitis C, you give the so-called treatment to people who don’t feel bad, you give it to them for a year and it makes them feel terrible. Your life is really limited while you’re being treated.”

But Loween and Quigg are already living limited lives, compelled by the constraints of prison life and the medical uncertainty of the status quo. Come October, several Deer Lodge inmates are likely to begin treatment for their disease, but neither Loween nor Quigg will be among them. Until something gives—Quigg’s lawsuit, Loween’s request for a medical parole—both men will just have to try to live with the uncertainty.

“I just want to know if I have the disease,” says Loween. “Sometimes I think maybe I don’t have it and that would be really cool. I don’t want to have it, but I want to know.”

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