by Alan Prendergast, Westword
When Joseph Deaguero went to prison almost three years ago, he had a pretty good idea of what to expect. He had been behind bars before, for a series of assaults and domestic-violence arrests. But this time around, Deaguero, who’s currently 52 years old and serving a twelve-year sentence for second-degree assault, began to wonder if he was going to survive the experience.
In 1996, Deaguero learned that he’d tested positive for hepatitis C, a blood-borne virus that attacks the liver and has infected 17 percent of the American prison population. At the time he was told not to worry about it; the virus can lie dormant in the system for decades without manifesting any symptoms, and about one in six of those infected will “clear” the virus on their own. In other cases, though, the virus leads to chronic liver disease, and a sizable number of the chronic cases – between 25 and 40 percent, depending on which studies you believe – can eventually develop into cirrhosis or liver cancer.
Shortly after he started serving his latest sentence, Deaguero complained of symptoms of a hep C flare-up: chronic fatigue, aching muscles and joints, a constant throbbing pain in his lower back. He went to the prison infirmary for tests and was told that there were new wonder drugs coming on the market that could actually cure hep C, in more than 95 percent of the cases treated. But before he could qualify for the medication, the Colorado Department of Corrections required that he take alcohol- and drug-education programs that can last from six months to a year.
Deaguero took the programs. Last spring he contacted the prison medical providers again to ask when he could start taking the cure. He was told he didn’t qualify for treatment. The new drugs are obscenely expensive – at full retail value, as much as $1,100 a pill, or $95,000 for one patient’s daily dosages over twelve weeks. According to DOC standards, Deaguero’s liver wasn’t damaged enough yet to justify the expense. Medical staff would continue to monitor him, and if tests indicated that his condition had worsened to a sufficient degree, he would then become eligible for treatment.
Deaguero filed a grievance, arguing that it would be better to treat him now rather than risk further damage and possibly the $500,000 cost of a liver transplant down the road. “To invest in my treatment now would make a lot of sense at this point in my life,” he wrote. “Not when it’s too late.”
His grievance was denied. He is now appealing. “They provide the least treatment possible, and it takes forever to be seen,” he says. “I understand it’s expensive. So is treating cancer, but the DOC does it. They are not consistent on how they grant treatment.”
Complaints about the prison system’s severely rationed approach to treating hep C aren’t confined to Deaguero. Many of the 2,200 prisoners in the DOC who’ve been diagnosed with hep C worry about not only worsening aches and inflamed livers, but also their one-in-five odds of a protracted, agonizing death from cirrhosis and organ failure. “I am aware of four others just in my living unit that have hep C and are in the same situation as me,” says 61-year-old John Spring, who was diagnosed with the virus in 2005 and has been approved for monitoring but not treatment. “I know of three inmates who have died because the DOC did not treat them or delayed their treatment.”
Nationally, hepatitis C claims more casualties than any other infectious disease, including HIV. Approximately four million Americans have the virus; as many as half of them may not even be aware that they have it, since symptoms can take years to surface. Because the blood-to-blood transmission occurs primarily through shared needles – from intravenous drug use, homemade tattooing and the like – the disease is highly concentrated in the correctional system, with a third of the identified cases surfacing in medical screenings in jails and prisons.
In Colorado, hep C has long been one of the leading causes of death inside state prisons. A recent Westword review of 823 deaths within the DOC over the past fifteen years found that 161 of those deaths, nearly one in five of them, were caused by end-stage liver disease and related illnesses. That’s roughly twice the number of suicides behind bars during that same period, three times the number of deaths attributed to drug and alcohol use, and four times the number of homicides. The data provided doesn’t specify how many of the liver-related deaths were the direct result of hep C complications, but the DOC has determined that the virus was a contributing factor in at least eighteen deaths over the past three years.
Because of the enormous costs involved, only a lucky few prisoners, around twenty a year, have actually received treatment for the disease since the wonder drugs first became available a couple of years ago. According to a DOC spokeswoman, forty prisoners have completed treatment so far and have been declared free of the virus; another ten are currently receiving the drugs. The bill to date for those cases runs to $2.8 million.
Prison officials say they give top priority for treatment to prisoners whose tests indicate a high level of liver scarring; they take into account other considerations as well, such as whether the patient also has HIV, which puts them at higher risk of complications from liver disease. But prisoners maintain that even those with alarming test scores have to wade through so many other requirements, paper-shuffling and foot-dragging – classes, biopsies, monitoring, review of their situation by an Infectious Disease Committee – that their treatment can be delayed indefinitely.
“As far as I’m concerned, DOC could stand for Department of Construction – because there are roadblocks at every turn,” says George Miller, serving 53 years for second-degree murder. “The year-long protocol to meet DOC criteria for hep C treatment is a diversion tactic.”
Miller suspects that he acquired the hepatitis C virus from a blood transfusion after a car accident in 1986. (Effective screening of the blood supply for the virus wasn’t implemented until 1992.) “I have no tattoos, no drug use in prison and no sexual activity,” he notes. But he’s watched his hep C scores get worse, along with his stomach pains, while he waits out a decision on whether he will receive treatment.
Another prisoner, James Dawson, says he received assurances from medical staff that his worsening symptoms – including itching, dark urine and a swelling in his stomach – merited treatment. (Like Miller, Dawson believes he acquired the virus from blood transfusions in the late 1980s, which he received after being shot and stabbed.) Last year Dawson signed a contract that the DOC requires for prisoners seeking treatment, but he has not yet received any medication or monitoring for progression of the disease. He’s now suing the department in federal court, claiming that the process that decides who actually gets treatment for hep C is “ambiguous, arbitrary and objectively unreasonable.”
While some prisoners have been told they’re not sick enough to get the cure, others have been told they’re too sick – or too old. The current DOC hep C treatment guidelines, updated in 2015, don’t specify an age cutoff for treatment, but for many years the standards for receiving an earlier, iffier course of antiviral drugs required that the patient have at least a twenty-year life expectancy and be under 65 years old. Ross Alley, 71, who’s serving 64 years for assault, claims he’s been trying to get hep C treatment for the past nine years but has been told he has too many other health issues to be a good candidate. “These are some conniving, no-good bastards who would rather see you die as treat you,” he says. “Death is cheaper than the cure. They do, on occasion, help the younger inmates, but us older guys are just left to die.”
Alley, Dawson and other prisoners recognize that their cause isn’t one the average taxpayer will readily embrace. The notion of paying for even substandard medical care for convicted criminals is repugnant to some, and the prospect of paying millions of dollars to cure a virus that is itself heavily stigmatized because of its association with drug use is bound to generate outrage. But with the cost of the antiviral drugs dropping, civil-rights and public-health advocates contend that it’s cheaper in the long run to address the hep C crisis in prison rather than begrudgingly treat a handful of the infected while ignoring the rest.
“When those prisoners are released with this communicable disease, they might be eligible for Medicaid,” notes Mark Silverstein, legal director for the ACLU of Colorado. “Then they might get treated on the public’s dime – or its silver dollar. It’s a long-term savings to treat the disease now rather then have to treat the long-term complications.”
In September 2016, the ACLU filed a class-action lawsuit against Colorado’s Medicaid program on behalf of patients who’d been denied hep C drugs because their livers weren’t sufficiently damaged to meet the program’s treatment criteria. The basic contention of the suit is that individuals who can’t afford private health insurance shouldn’t be denied lifesaving care “for the sole reason they are poor.” Silverstein says he understands the rationale for prioritizing treatment when expensive medications are involved, but he is also looking closely at the hep C guidelines developed by the DOC, which he considers even more restrictive than the Medicaid rules that the ACLU is challenging.
“The protocol is supposed to be about being eligible for treatment,” he says. “But it appears to me that being eligible for treatment in the DOC and actually receiving treatment are way different things.”
Although it’s received scant attention in the mainstream press, the quandary over treating hepatitis C in prisons encompasses familiar issues and forces in the national debate over health care. It involves a target population of patients who are disenfranchised and void of political allies, colliding with the brutal economics of Big Pharma and the strained resources of a state bureaucracy that, despite a budget approaching a billion dollars a year, doesn’t have the funds available to fulfill its mandate to care for the medical needs of 17,500 prisoners.
The surge in hep C cases behind bars over the past two decades is partly a matter of more diligent testing, but the scope of the problem still managed to catch corrections health officials by surprise. Researchers had suspected the existence of a strain of “non-A, non-B type hepatitis” as far back as the 1970s, but it wasn’t until the late 1980s that a reliable method was developed for identifying the virus – and screening it out of blood-bank supplies. It took many more years for correctional systems to develop their own detection and treatment protocols. The Colorado Department of Corrections had screened prisoners for liver abnormalities as far back as the 1970s, but it didn’t begin testing all prisoners on intake for the virus until 2007.
Although not every case of hep C can be traced back to a dirty needle – it’s a hardy virus, and studies indicate that it can live outside the body at room temperature for weeks – it seems particularly well-suited for transmission among convicts. People who engage in intravenous drug use, amateur tattooing and other high-risk behavior are particularly vulnerable. But that marginalized population is also the least likely to obtain medical help for the disease; a recent study by Yale researchers indicates that less than 1 percent of prisoners in state prisons who have hep C are receiving treatment.
Until fairly recently, the standard treatment regimen consisted of high doses of interferon, a virus-fighter produced by white blood cells, in combination with another drug, ribavirin. The drugs were expensive (as much as $25,000 per patient), effective in fewer than half the cases, and could cause significant side effects, from anemia, hair loss and flu-like symptoms to memory loss and liver failure. Adding a third drug to the package, boceprevir, appeared to boost success rates somewhat, but also increased the likelihood of side effects. Most prison officials were reluctant to invest in such costly and unreliable therapy, particularly if there was a good chance that the patient might go back to injecting drugs and get infected all over again.
In Colorado, a pre-condition to interferon treatment was that the prisoner go through a year of substance-abuse classes and stay drug-free; even sneaking a cigarette was cause for rejection. Some prisoners found long waiting lists for the classes or were told they weren’t sick enough to qualify, then later told that their condition had deteriorated to the point that it was unlikely that the drugs would do any good.
A 2002 Westword report on the problem found that only one in a hundred prisoners who had hep C were getting the drugs, and that hepatitis-related illnesses had outpaced heart problems, lung cancer and all other natural causes as the leading killer in the DOC.
But starting in 2013, the release of a new generation of direct-acting antivirals, known as DAAs, offered new hope for hep C patients. The new drugs are tailored to combat specific genotypes of the virus, are accompanied by few side effects and are incredibly more effective than interferon, resulting in a virtual cure in more than 90 percent of patients. They are also incredibly more expensive.
One of the wonder drugs, Harvoni, came with a $95,000 price tag for a twelve-week course of treatment. Insurers negotiate confidential discounts, but the $1,100-per-pill sticker shock quickly became a source of anger and indignation among lawmakers, advocacy groups and other critics of pharmaceutical companies. It didn’t help that Harvoni’s maker, Gilead Sciences, reportedly spent $100 million on television and magazine ads touting its breakthrough directly to consumers, featuring actors declaring, “I am ready to be cured.”
Prison systems, like many state Medicaid systems, have responded to the demand for Harvoni and similar medications by developing elaborate treatment protocols that severely limit access to the wonder drugs. A patient has to have a high fibrosis score (an indication of liver scarring), participate in substance-abuse classes and drug testing, be reviewed by a committee and so on. Colorado’s restrictions on who actually gets the drugs are fairly typical, according to Rich Feffer, the correctional health programs manager for the Seattle-based Hepatitis Education Project.
“Every prison system sets its own criteria for testing and treatment,” Feffer notes. “Prisons are supposed to treat all health conditions to the community standard. But because they have such a high prevalence rate of hepatitis C and the drugs are so expensive, they have come up with ways to triage care.”
While budget considerations dictate the triage approach, that approach also flies in the face of the treatment guidelines developed by the American Association for the Study of Liver Diseases, which now recommends DAA drug therapy for all chronic hep C patients other than those with short life expectancies. The DOC responded to aWestwordrequest to interview its chief medical officer, Dr. Susan Tiona, with a brief written response regarding its hep C policies. But in a more detailed e-mail response to an inquiry by state senator Pat Steadman a few months ago, Tiona acknowledged that the department was treating only 20 to 25 prisoners for hep C a year.
In the e-mail, Tiona noted that the DOC has roughly 2,000 prisoners who’ve been diagnosed with chronic hep C. By calculating that 20 percent of those prisoners will develop significant liver disease, she arrived at “a target group of approximately 400 offenders that could benefit from treatment.”
She continued: “Given the generally slow progression of liver disease in chronic hepatitis C, if we continue to identify and prioritize the sickest individuals for treatment each quarter, we should be effective in eliminating Department-wide deaths from hepatitis C within the next decade, and we should be effective in eliminating all additional complications from hepatitis C by 2035. Should our resources increase, or should the cost of the medications decrease, allowing us to treat more offenders per year, we could reach these goals even more quickly.”
Tiona’s memo doesn’t explain how her staff could identify which 400 prisoners out of the 2,000 are the ones who could benefit most from treatment. But even if the selection process was flawless, at a rate of 25 prisoners a year, only 250 out of that 400 could expect to be cured in the next decade. And, of course, the calculations don’t address infected people moving in and out of the system, or how many deaths and “additional complications” would result from lack of treatment of thousands of prisoners between now and 2035.
Steadman’s inquiry was prompted by Nancy Steinfurth, the executive director of Liver Health Connection, a Denver nonprofit. She points out that the triage approach is based on the flawed assumption that hepatitis C progresses in a linear fashion, with gradually rising fibrosis scores and other symptoms. In fact, a patient whose symptoms seem quite mild one year might be in a critical situation the next.
“I was saddened by her response,” Steinfurth says of Tiona’s e-mail. “It seems like a very slow response to the disease. These people are at the whim of the Department of Corrections as to whether they get treated or not. It’s heartbreaking to think of these people not able to do anything else, just waiting to be possibly cured. The DOC has a lot of power over whether someone is living or dying.”
Recently the DOC submitted a funding change to its budget request for the next fiscal year, proposing to shift $2 million from mental-health services and other funds to hep C treatment, doubling the current amount of money devoted to fighting the disease. The reallocation would allow the department to offer the cure to up to seventy prisoners next year, at an average cost of $57,000 per patient – without actually asking for an increase in its current $846 million annual budget.
Michael Tenneson can appreciate the irony. He had tried to kill himself several times, going back to childhood. He had killed others with impunity, people he didn’t even know, just because they had something he wanted.
Life meant nothing to him. He had done terrible things in two states, fully expecting to be executed for his crimes. But one of the states, Wisconsin, has no death penalty, while in Colorado he managed to cheat the hangman. And then, just as he got interested in sticking around – life in prison, okay, but still a life of some kind, a chance to take things in a different direction – hepatitis C started having its way with him. And prison officials aren’t exactly falling all over themselves to save him.
Unlike many prisoners, Tenneson can pinpoint exactly the moment he was infected with the virus. In 1987, when he was 27 and on the lam from a triple homicide, he traveled by Greyhound bus from Chicago to Denver. There was a woman on the bus who was shooting up cocaine. She asked him if he wanted to join her. She also said something about hepatitis, but Tenneson didn’t give a damn.
“I felt I had nothing to lose at that point,” he recalls. “I expected to die when the police caught me anyway. So we shared a needle several times.”
Two days before he got on the bus, Tenneson had broken into the home of 73-year-old Lila Bush in La Crosse, Wisconsin, in search of cash and drugs. He fatally shot Bush, her 33-year-old son, Kenneth, and Kenneth’s girlfriend, Debra Raget.
The killings made no sense. Little about Tenneson’s emotionally twisted, drug-addled, escalatingly violent life did. Court testimony would later describe how his alcoholic father beat him and raped his mother in front of him. By the time he was six, he was trying to commit suicide by running in front of cars. By his teens, he was in and out of reformatories, on and off heroin and speed, and had been diagnosed with an impressive array of personality disorders. In his early twenties, he raped an 83-year-old woman and then tried to kill himself in jail. The Bush family murders occurred while he was on work release from other crimes.
Tenneson got off the bus in Denver, met a woman in a bar, and decided to lay low in the Mile High City. Not long after he arrived, he awoke with a fever, a yellowish tinge to his eyeballs and an ache in his left arm, which had a vivid red line running down it. He knew it had to be something he picked up from the chick on the bus, but he was too afraid to go to a hospital. The fever broke the next day.
He soon had other worries. After only a couple of months in town, he partied with some new buddies, 23-year-old Jeffrey Sheffield and Mitchell Gonzales, 22 – and then shot them in the head while they slept. Caught driving the car of one of the victims the next day, he was arrested and eventually confessed to the Wisconsin murders.
Wisconsin gave him three life sentences. Denver prosecutors asked for the death penalty, asked the jurors not to be swayed by stories of poor little Mikey and his drunk dad and his weird behavior. “Mr. Tenneson suffers from a very serious personality defect,” prosecutor Mike Little acknowledged. “He kills people.”
But one holdout on the jury refused to vote for execution, and Tenneson was sentenced to life in prison. His reprieve became a rallying cry for district attorneys who wanted to take the death-penalty decision out of the hands of jurors and turn it over to a three-judge panel – a process Colorado adopted briefly in the 1990s before the United States Supreme Court declared such arrangements unconstitutional.
Over the years, Tenneson has become an accomplished painter, showing work in professional galleries. He says he’s no longer the monster, the “drug-addicted drunk” who committed such terrible crimes.
“I narrowly missed the death penalty in 1987, and since then I have spent the last 29 years in a concrete box smaller than an apartment bathroom, doing the very best I can to make the world a better place,” he says. “I feel horrible for the loss of life and pain and suffering I caused my victims and their families.”
Tenneson recognizes that there are people who believe he could make the world a better place by leaving it. People who would see a kind of karmic justice in the fact that, having dodged execution by lethal injection, the five-time killer now faces the possibility of a horrible death from an injection he administered himself thirty years ago. But that’s not the way he sees it. Having committed to keeping him behind bars the rest of his natural life, the system has an obligation to treat him, he says, rather than giving him the runaround and dooming him to a preventable death.
“I was given life,” he says, “not death. The DOC is essentially taking thousands of inmate lives into their own hands, throwing our names in a giant fishbowl, and picking out a small handful and telling them they can be treated. It’s a death-sentence lottery.”
When he first entered the prison system three decades ago, Tenneson’s hep C didn’t show up in any of the standard medical tests. He finally learned he had the virus in 1992, when he complained of feeling run down and had blood work done. He was told his liver enzymes weren’t sufficiently abnormal to warrant interferon treatment.
For years Tenneson watched his liver enzyme levels rise and experienced other symptoms, including nausea and fatigue, that indicated his condition was getting worse. He pushed for treatment. Staffers at the Limon prison discouraged him, stressing that the interferon “cure” could be worse than the disease. Eventually they told him he needed to have more lab work done and a liver biopsy, take 24 Alcoholics Anonymous sessions and get official approval to qualify for treatment. “I had the labs done,” he says. “I took the AA sessions. I requested the liver biopsy, but it was never scheduled. I was told my case had been submitted and to just be patient.”
After two years of waiting, it became clear to Tenneson that Limon officials weren’t even going to order a biopsy. He took another round of substance-abuse sessions, hoping they would reconsider. In 2001 he was moved to the Sterling prison and began the whole process over again: labs, AA, consultations, denials. In 2008 he was moved again, to Arkansas Valley, and once again pressed for treatment. Medical staff asked him why he hadn’t had a liver biopsy yet.
“The physician’s assistant told me they had no record of my attempts and I would have to take the 24 sessions – again,” he says. Several months later, a biopsy was taken. Tenneson was told his liver wasn’t sufficiently damaged to justify treatment.
Back at Sterling in 2010, he again asked for interferon. His kites went unanswered for months. After another transfer to Arkansas Valley, he’s now at the Colorado Territorial Correctional Facility, getting new labs done and learning about more hoops he’s expected to jump through to qualify for the new wonder drugs.
“All they’re trying to do is discourage people from getting a lifesaving treatment by making it as difficult as possible to meet the criteria,” he says. “How many times do I have to sit in a room full of self-pitying drunks? What does that have to do with being qualified to take a lifesaving treatment for hep C?”
Several lawsuits filed by prisoners have claimed that correctional-system restrictions on hep C treatment appear to be little more than delay tactics. A recent ruling in a case brought by prison activist Mumia Abu-Jamal found that Pennsylvania’s treatment protocol “presents deliberate indifference to the known risks which follow from untreated chronic hepatitis C.” The threat of lawsuits is prompting Medicaid systems to expand access to the new drugs, and prisons are somehow supposed to meet the same standard of care – even though to do so now seems prohibitively expensive. Even with heavily discounted drugs, treating all of the chronic hep C prisoners in Colorado could cost $100 million.
“If they tried to treat everyone with hep C, it is simply unaffordable,” notes Feffer of the Hepatitis Education Project. “It is important to prioritize the patients who need care, but from a public-health standpoint, it doesn’t make sense. Ninety-five percent of the people in prison get out. Prison health is community health; by curing people, you’re reducing the number of infections. This should be considered a priority population [for treatment] if you’re trying to reduce the cost of end-stage liver disease and liver transplants.”
But correctional systems, Feffer explains, have little motivation to offer prisoners a costly cure. If most of them get released to the community before the damage becomes irreversible, then the liver transplants become someone else’s problem. “Prisons aren’t incentivized to treat, because they’re not the ones who are going to save the money,” he says.
No one knows better than Tenneson that the world has little compassion to spare for the likes of murderers and rapists. But, he says, the system is supposed to be better than the people it incarcerates.
“We live in a country that publicly claims to care about human rights,” he says. “It’s easy to hate us and blame all of society’s problems on us. But you can pay to cure this disease today, or pay much higher penalties tomorrow for ignoring it.”
Ed Note: Lawsuits challenging the systemic failure of prison officials to provide adequate treatment to prisoners with hep C, including the latest generation of hep C drugs that have a high cure rate, have been filed in Minnesota, Tennessee, Pennsylvania, Massachusetts and Florida. Other lawsuits have been filed on behalf of individual prisoners who have been denied treatment. [See: PLN, April 2017, p.34; Feb. 2017, p.21; Aug. 2015, p.22].
This article was originally published by Westword (www.westword.com) on December 13, 2016; it is reprinted with permission, with minor edits.
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