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The Needle and the Damage Done

In prison, getting hepatitis C is easy. Getting treatment isn't.

Terry Akers feels like death warmed over.

His back throbs. His testicles ache. His gut -- dude, don't even ask. It's like he's living in an old Road Runner cartoon, and someone just shoved a keg of nails down his swollen throat. He's got a bad case of cottonmouth and a fierce need to urinate, thanks to the painkillers, which don't seem to be doing...anything...about the pain.

Sitting in a glass-and-steel booth in the Colorado State Penitentiary, the state's highest-security prison, he fingers the murky blue tattoos that cover his spindly arms -- wizards, demons, naked nymphs, the phrase WINNER TAKES ALL arching across his left bicep -- and tries to focus. What was the question? How long has he been inside?

Brett Amole
Nancy Brown has battled prison officials over hep C treatment for her husband.
Brett Amole
Nancy Brown has battled prison officials over hep C treatment for her husband.
Inmate Grant Brown
Inmate Grant Brown
One small catch: After two years of delays, Terry Akers is no longer eligible for interferon treatment.
Brett Amole
One small catch: After two years of delays, Terry Akers is no longer eligible for interferon treatment.

Twenty-three of his 42 years, plus a few months in juvie. The last ten years in solitary confinement. The last seven in 23-hour-a-day lockdown at CSP. "I've been in one kind of cage or another since I was a kid," he says.

In a cage, or trying to get out. Fact is, this Terrance Joel Akers, underweight and pasty-skinned and hurting, is merely a ghost of the badass he used to be. Go back twenty years, to the 21-year-old hothead, recently escaped from a Virginia prison, who knocked over a Taco Bell in Arvada for dope money and wound up killing a teenager who tried to stop him.

Or fifteen years, when the tattoos were still fresh, to the inmate known as "Smiley," who iced another prisoner because he thought the dude was planning to do him.Not long after that, Smiley Akers went to court to be sentenced for one of his many escape attempts, used a zip gun to hijack a prison van, and fled through the streets of Cañon City.

Go back even ten years, when six lifers with nothing to lose busted out of Centennial, a maximum-security prison, shooting a guard in the process. Wearing an officer's uniform and armed with a handgun of mysterious origin, Terry Akers was the last of the bunch to be captured.

That Terry Akers was a desperado, all right-- and a real escape artist. But this one? A ghost, a wisp, humbled by a cage even he can't escape. He's trapped not just in CSP, which was built for men like him, but in his own ravaged body, a funhouse of failing organs and bad chemistry and the pain of the damned.

Akers knows he is going to die in prison. He'd have to live to 133 to see parole. His doctors say he might still be alive for his 45th birthday, three years away, but fifty is probably out of the question. He is dying of cirrhosis, a particularly nasty liver disease that announced itself a few months ago by pumping fluid into his abdomen and rupturing veins in his esophagus.

Cirrhosis is often the result of chronic alcohol abuse, but Akers is no boozer. Having spent almost his entire adult life in stir, he's had little opportunity to imbibe; wine tastings are hard to come by at CSP. He blames his condition on another culprit. Two years ago he was diagnosed with hepatitis C, a bloodborne virus that, depending on whose figures you believe, has infected 20 to 40 percent of the entire U.S. prison population.

Hepatitis C is one of the most common causes of chronic liver disease. The virus can be transmitted a number of ways, including exposure to blood products or blood transfusions given before 1992, when better screening methods emerged; unlike AIDS, it's not easily acquired through sexual contact. These days hepatitis C is spread primarily through intravenous drug use, amateur tattooing or what health-care workers call "needle-stick accidents." Although the virus can lurk in the system for years with no visible symptoms, most hepatitis C infections ultimately become chronic, with the potential for cirrhosis, liver cancer and organ failure.

Akers hasn't had access to tattoo work or hard drugs in more than a decade. He speculates that the virus might have found him through a shaving nick -- a few years ago, CSP banned disposable razors and required prisoners to share electric shavers, a practice since abandoned. ("They said they sterilized those shavers, but when you cracked one open, there was enough hair to build a toupee, so you know they didn't clean them," he says.) But the most likely explanation, he concedes, is bad behavior of long ago: "I would have to say it was probably drugs or tattoos."

An estimated 4 million Americans, in all walks of life, carry the hepatitis C antibody, indicating ongoing or past infection by the virus. But the link to dirty needles makes hepatitis C particularly well-suited for transmission among convicts. The combination of a criminal lifestyle and the disease's ability to lie dormant for decades --during which a carrier may drift from prison to the street and back again, passing along the disease in cellhouse tattoo parlors and shooting galleries -- has produced a corrections health crisis of staggering dimensions.

Keeping that crisis contained within prison walls is a formidable challenge. A cutting-edge regimen of drugs has proven effective in treating up to 40 percent of hepatitis C patients in this country. But the drugs are expensive, as much as $25,000 per patient, and prisoners say they face an obstacle course of procedures, delays and bureaucracy that effectively denies treatment to many of them. At issue is not simply whether murderers, rapists and other felons deserve such costly treatment -- court cases have generally held prison medical providers to a "standard of care" comparable to that of the surrounding community -- but whether budget-conscious corrections officials can set conditions for treatment that seem designed to keep the pool of patients on drug therapy at a minimum, regardless of the medical need.

The Colorado Department of Corrections is considered to be ahead of the curve in dealing with hepatitis C. The DOC has screened its inmate population for liver abnormalities since the 1970s, long before hepatitis C was identified as such. The DOC also claims a lower incidence of the virus among its population than most other state prison systems; 15 percent of the inmates coming into the DOC this past year have tested positive for hepatitis C. But Akers and several other prisoners have filed grievances about the hep C program, claiming that the agency's foot-dragging is costing them their health and possibly their lives.

The DOC's doctors knew he had hepatitis C two years ago but refused to put him on drug therapy, Akers says, even after tests revealed his rapidly deteriorating condition. Now that he's developed cirrhosis, he's no longer eligible for the drugs. "The whole time, I kept asking for treatment," he remembers. "I didn't know very much about it, but I knew that the sooner they treated it, the more chance there was that the treatment would be successful. They told me I didn't meet the criteria."

Joseph McGarry, the DOC's chief medical officer, says the agency's requirements for hepatitis C treatment are reasonable -- particularly since no one knows if the drugs help in the most serious cases, anyway. "We don't have any evidence that the stuff we're doing affects mortality at all," he says. "I don't think a delay in treatment is going to have any demonstrable effect, because the treatment itself hasn't been proven effective."

Akers acknowledges that a killer's aches and pains aren't something that causes public-health officials to storm the gates. Few people will mourn his passing, he suspects, and that situation allows prison authorities wide latitude in his treatment. "What do they care?" he says. "No one's going to listen to us anyway."

Yet the way he sees it, while treating hepatitis C in thousands of prisoners may be expensive, ignoring it could be even costlier.

"They say 20 percent of the prison population has this, but how many are actually getting treatment?" he asks. "This disease may get to me, but most of the others are going to be back on the street and spread it to other people out there."


The surging number of hepatitis C cases in prisons is partly a matter of more diligent testing, but the scope of the problem managed to catch corrections health officials by surprise. Many agencies were still struggling to find the resources to cope with their AIDS population when they were confronted with a flurry of reports concerning another virus -- which, until 1989, was generally referred to as "non-A, non-B type hepatitis." It wasn't until five years ago that researchers developed a treatment protocol for the disease, and even the drug therapy now recommended in chronic cases is considered an "evolving" area of clinical practice.

The chief drug used to combat hepatitis C is interferon, a virus-fighter produced by white blood cells. In high doses, interferon has proven successful in ridding the body of detectable levels of the virus in up to one-fourth of the patients treated. However, the drug also has a range of potential side effects, from hair loss to flu-like symptoms to depression, and relapses aren't uncommon when the patient stops taking interferon. A combination of interferon and another drug, ribavirin, which was approved by the Food and Drug Administration in 1998, has achieved a success rate of around 40 percent, but long-term effects are still uncertain.

Eyeing both the cost of the drugs and their limited effectiveness, many states have been reluctant to fund treatment programs for prisoners, prompting lawsuits and accusations of stonewalling. Under pressure from a federal judge, the Kentucky Corrections Department recently backed off a tightfisted policy that excluded virtually all of its infected prisoners from treatment. That state's new medical plan will provide drugs for up to a thousand inmates already known to carry the hepatitis C virus and could cost the state as much as $25 million over the next two years.

Colorado was one of the states Kentucky officials contacted for advice in revising their plan. The DOC has its own elaborate protocol for deciding who will receive interferon or ribavirin -- one that's not as restrictive as the old Kentucky policy but has a few inflexible requirements of its own. For example, patients who are less than two years away from their discharge date, older than 65 or have a life expectancy of less than twenty years are not eligible for the drugs; nor are those who have already acquired cirrhosis, are still using illicit drugs or drinking, or have demonstrated "an established pattern of refusing to comply with medication contracts."

Medical chief McGarry says his department revised the protocol extensively last year in order to mount a more aggressive response to the virus. In the past, when a prisoner's medical tests revealed abnormally high liver enzymes, the agency used to wait six months to see if the levels persisted before running specific tests to detect the presence of hepatitis C. Now the hepatitis screening is done right away. "We're doing it sooner, and that streamlines how fast we're able to know if someone has hepatitis C," McGarry says.

But diagnosis is no guarantee of treatment, as Terry Akers discovered. He says he was told he had hepatitis C when his liver enzymes came back "high" two years ago. But he was also told to check back in six months so that his doctor could determine if he had a chronic case. (Eighty-five percent of all hep C cases develop into chronic infections.) Six months later he was put off for another six months; his case wasn't drastic enough to fit the treatment criteria, he was told, and department policy at the time required that liver enzymes be elevated for at least one year before drug therapy would be considered.

In the fall of 1999, after a full year of delay, Akers's case was finally certified as chronic hepatitis C. According to his medical records, the levels of key liver enyzmes had increased significantly during that year. But in the DOC medical staff's opinion, Akers's body was "fighting the infection adequately," and the lab results reflected no need for immediate treatment.

"Medical evidence supports the fact that this is a lifetime disease, with terminal illness from this being very remote," medical officer Orville Neufeld wrote in a memo to Akers. "Statistically, 95 percent of individuals with hepatitis C will die from other natural causes."

Akers filed formal grievances complaining about the lack of treatment, only to discover another catch: The DOC requires that hepatitis C patients complete a year of substance-abuse classes, complete with random drug testing, before being considered for interferon. Akers wondered why no one had told him about the requirement earlier so that he could get started on the classes; he also wondered how he was supposed to get access to such a program within CSP, which only offered much shorter drug-education programs on video.

McGarry says he isn't sure when CSP began to offer the one-year substance-abuse classes; more than a dozen inmates there are now enrolled in them. The classes became a requirement for treatment only a year ago, and other inmates besides Akers have complained of getting a runaround about them at CSP. (Calls to the prison's warden, Gene Atherton, were not returned.) In any event, Akers's condition soon began to defy the cheery assessment the prison's medical professionals had given him.

Last spring his stomach became grossly distended, as if he were carrying a beach ball under his shirt. At first the doctors suspected a bacterial infection, but it was ascites, an accumulation of fluid that is one of the common symptoms of cirrhosis. The veins in his esophagus also became painfully swollen. The DOC's internal medicine specialist said he'd seen worse.

After dinner a couple of months ago, Akers began to vomit blood. A physician's assistant responded to his distress call, looked in his toilet and decided, yep, that was a lot of blood. He was rushed to one hospital, then another, as he continued to throw up "mouthfuls of blood like it was cheap beer," Akers recalls. His esophogeal varices had ruptured in five places, requiring surgery.

Neufeld's statistics aside, researchers estimate that one in five chronic hepatitis C patients will develop cirrhosis. But the process can take ten or twenty years, and McGarry says there's no evidence that earlier treatment with interferon would have any positive result in the most serious cases. Although the DOC's own literature describes interferon as "potentially curative treatment," McGarry is wary of overstating its benefits.

"The disease takes so long to manifest itself, it's difficult to have the medical trials to show the drug treatment is effective," he says. "They've never proven that any of the people who get 'cured' are people who were going to develop hypatic failure or liver cancer otherwise. It's possible that the people who respond well to treatment were going to have a benign course anyway and didn't need treatment."

Now that Akers has developed cirrhosis, the DOC considers him a poor candidate for interferon, a position that's supported by many medical authorities. But Akers has a letter from a private doctor who believes he may still benefit from the drug therapy, and other states, including Kentucky, have considered offering the drugs to cirrhosis patients as well.

Akers says he doesn't have any complaints about his nurses, the physician's assistant or Dr. Neufeld; despite his violent history, they've treated him well, and he understands their hands are tied by department policy. The real issue, he says, is that the DOC treats so few of the people who have hepatitis C. Several of his buddies at CSP scrambled to get into the drug-education classes after they saw what happened to him, but as far as Akers knows, none are receiving interferon yet.

In Colorado prisons, McGarry estimates, around 2,000 hepatitis C patients have cases serious enough to make them candidates for treatment. But because of the various requirements for treatment, including the one-year waiting period, currently there are no more than ten to twenty inmates on interferon, he says.

Even with that small percentage, Colorado still ranks as one of the more progressive states in attacking the problem. Several states offer no treatment programs at all.


To become a candidate for drug therapy while in the care of the DOC, a prisoner who's tested positive for hepatitis C must first sign a contract. The contract states that the supplicant will take a year of substance-abuse classes, submit to random urine testing four times during that year, and commit to further tests and classes throughout the course of treatment. It's a straightforward document, one that seems to make perfect sense. After all, a patient who continues to shoot up is probably going to get reinfected anyway, so why bother to offer him a costly and futile program?

"Since you're using expensive and somewhat experimental treatment," says McGarry, "you want to make sure you have a highly motivated group of people who are taking part in this."

Yet fulfilling the contract can be a complicated matter. Prisoners aren't very good at following rules -- that's why they're in prison. And the contracts actually involve prohibitions that have little or nothing to do with the medical requirements for successful drug therapy. Consequently, patients who commit what might be considered in another setting a minor infraction -- such as sneaking a cigarette -- could wind up being denied lifesaving medical treatment.

"They're making it a privilege to get interferon," notes inmate Grant Brown, a resident of the Kit Carson Correctional Center in Burlington. "If they think you're a bad boy, you can't get medical treatment, basically."

Brown is a 33-year-old offender serving two consecutive sixteen-year sentences for burglary, courtesy of former Denver judge Lynne "Hang 'em High" Hufnagel. He admits to having dabbled in drugs during his past dozen years behind bars. He also has what prisoners call a "shirt": arms, back and chest covered in tattoos. He was diagnosed with hepatitis C eight years ago. Last spring, while he was staying in a halfway house in Denver, tests showed a dramatic rise in the levels of his liver enzymes, making him a candidate for interferon therapy. But before his own doctor could put him on the drugs, he was yanked out of community corrections for marijuana use and returned to prison.

Since then, Brown has been shuffled from one prison to another, with little attention to his medical problem. One doctor prescribed a low-fat diet that the prison kitchen had trouble accommodating; in the meantime, he's continued to lose weight and battle fatigue and other symptoms. He says he only learned of the requirement that he take a year of substance-abuse classes when he arrived at Kit Carson a few weeks ago; the months of classes he took during his prior prison stay didn't count, he was told, because he'd tested positive for drugs. Brown contended that he ought to get at least some credit for the classes he took at the halfway house -- but then he was told he could be bumped from eligibility because a recent urine test came back positive for a drug that, outside prison walls, is still legal.

"They tell me I'm no longer a candidate for interferon because I had nicotine in my system," Brown says. Although he won't cop to lighting up at Kit Carson, he notes that smoking was permitted at his halfway house, "and I don't know how long a trace of nicotine stays in your system."

Within the DOC, though, nicotine is considered a "substance of abuse" -- and ample reason to deny interferon treatment. "If you're cheating on nicotine, you're cheating on the rules for not using drugs," McGarry explains. "We're given a certain amount of funds to take care of the inmates, and you have to make decisions how you use it. A person who's breaking the rules, I just don't think that's a very good candidate for getting a $25,000 therapy."

Brown contends he's being denied on bureaucratic rather than medical grounds. "I can understand denying you interferon if you're doing dope," he says. "If you're doing heroin or speed or cocaine, you're hammering your liver anyway. But in my case, we're not talking about hard drugs.

"Look, I got this [disease] in prison. Yes, I was doing some illegal activities in prison. Whether I got it from drugs or tattoos, we shall never know. But because I'm in prison, does that make me less of a human being? Because I've gotten some hot UAs [urinalyses], should that be used to deny me treatment? I don't think so. I could teach the classes."

Unlike most prisoners, Brown has an advocate on the outside campaigning for his treatment -- his wife, Nancy, a medical assistant who's cajoled, prodded and browbeaten DOC officials and administrators at Kit Carson, a private prison under contract with the state, concerning her husband's care.

"He's literally dying in there," Nancy Brown says. "I have written. I have called. The warden got mad at me and said, 'You have something to say, you put it in writing.' They won't even talk to me. I've told them I will hold them all responsible if my husband dies because they denied him treatment."

Grant Brown has a parole hearing next summer and expects to be returned to a halfway house long before that. "I will be in community [corrections] before I ever get a biopsy from DOC," he says. "I have almost fourteen years in on a nonviolent property crime. The chances of me getting parole are pretty good. If they don't want to treat me, fine. Release me and let me treat myself."

For most of the DOC's hepatitis C patients, though, quick release isn't an option. Within a few months, the number of "candidates" who have completed the classes and are clamoring for interferon is likely to grow exponentially. But the current budget for hepatitis C treatment is only a million dollars per year; administrators will be faced with many more hard choices about who receives the pricey drugs and who doesn't while lobbying the legislature for more resources.

"This is a real problem," McGarry says. "The light at the end of the tunnel is a train. Everyone says that this disease has the potential to bankrupt a prison system, but we just have to find a way to deal with it."


Long before he found out about the cirrhosis, Terry Akers began to write the story of his life.

It's not a particularly glamorous or romantic story. Told in a flat, unadorned style, in the same poisoned vein as the autobiographical novels of ex-con Edward Bunker, it's a chronicle of a wasted life, of explosive anger and rock-stupid criminality and senseless killing, and of the desperate alliances and betrayals devised by men who live in cages. It is unsparing in its appraisal of prison life and its deeply flawed protagonist.

Akers still works on the manuscript when he feels strong enough. He's vowed to finish it before he dies, seeing in the work at least a shot at redemption. He hopes to find a nonprofit, maybe some group that works with troubled youth, that might publish it, keeping any profits for its mission. His ideal reader, the audience he's trying to reach, is a kid stewing in a juvenile detention center somewhere with nothing to do.

"Maybe some of those little hardheads on the street would get a chance to read it, and it would make a difference to them," he says. "See, it was people like me I looked up to as a kid. The only people I saw worthy of respect were dope dealers and such. I went from stealing candy bars to burglaries, stealing cars, and it all seemed like minor bullshit -- until I was fucking jammed. Because I never addressed the situation, everything I did just got me in deeper. I want them to know that, if you keep on that path, after a while there's no way out."

His hand glides over the tattoos. Winner Takes All. Asked what it means, he says there's no hidden message. Just what's there.

"If you survive in here," he says, "you're a winner."

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