On the morning of January 30, a 43-year-old inmate went to the infirmary at Dixon Correctional Center complaining of chest pain. When he returned to his housing unit, he told the other prisoners he'd been treated with Tylenol and Tums. That evening, he collapsed in the doorway of his cell.
Daniel Holland, who lived a few doors down, had a front-row seat for the ensuing commotion, and watched as staff carried the man away in a body bag. He called me the next day. "They let you die here," he said.
Holland first contacted me in May 2002 complaining in a letter that Illinois prisons provided inadequate health care.
His own health problems started with a stomachache on April 10, 2000. The evening is a bit of a blur--he spent it vomiting into the toilet in his cramped cell at Western Illinois Correctional Center, where the state was keeping him at the time. "I was hugging the bowl, too weak to stand, with only a desk lamp on," he explained. "I thought what I was regurgitating was chili, but my cell mate got tired of waiting for me to stop hurling and got the cops." When staff arrived and "flipped on the fluorescents," Holland saw that he was lying in a pool of blood. An ambulance took him to a hospital about 30 miles south of the prison. A nurse later told his girlfriend that he'd lost so much blood she was surprised he'd made it there alive. Over the next few days he received three liters of blood--more than half of what an average man's body contains.
Holland, then 43, was diagnosed with esophageal varices, dilated blood vessels that can occur when the scar tissue of a damaged liver disrupts the flow of blood, which then backs up in the vein connecting the liver to the other abdominal organs. The blood redirects itself out through tiny vessels in the wall of the esophagus, and those vessels can stretch beyond their capacity and burst, resulting in a massive hemorrhage. Sometimes the bleeding stops on its own or with medical intervention, but at least 30 percent of the time bleeding varices are fatal.
Holland doesn't remember much about being in the hospital--he was disoriented and verbally unresponsive. According to his medical records, after four days and an invasive procedure in which doctors tied off the bleeding blood vessels with latex bands, his condition stabilized and he was deemed well enough to return to prison. But within eight hours he was hemorrhaging again.
This time the ambulance took him to a hospital closer to the prison. At Memorial Medical Center in Springfield a gastroenterologist named Fernando Castro inserted a tiny video camera at the end of a thin, flexible tube down Holland's throat to transmit images of the esophagus, stomach, and duodenum, but could not pinpoint the source of the bleeding. To reduce the risk of future ruptures--which are common--Castro prescribed medication to decrease Holland's heart rate and lower his blood pressure.
Castro had bad news for Holland. Blood tests had revealed that his platelet count was low and his liver enzymes mildly elevated. He diagnosed Holland with cirrhosis, gallstones, and an ulcer, but that wasn't all that was wrong. Holland also tested positive for the antibody to the hepatitis C virus (HCV), a deadly blood-borne disease that appeared to be destroying his liver. Castro's findings surprised Holland. He'd felt perfectly healthy until he'd started vomiting. He didn't have the symptoms of cirrhosis: no jaundice, no weakness, no muscle wasting. Just days earlier he'd been lifting weights at the prison gym.
Castro explained that a more specific diagnostic test was needed to confirm the presence of the virus, and Holland left the hospital under the impression that Castro would be treating him for hepatitis C--"He said he was going to do clinics with me every two weeks."
But the day he was discharged, IDOC transferred him to Danville Correctional Center, almost 200 miles away. He never saw Castro again.
A few months later, the hepatitis C diagnosis was confirmed. In the three years since, Holland says, prison doctors have alternately told him that there's no known treatment for the disease, that there is but it costs too much, and that he's not a candidate for it.
Holland says he's not receiving proper medical care, and that he's not the only one. "I had lunch with six guys who all have hepatitis/cirrhosis, all at varying stages and durations, and not one is being treated for the cause of their disease." This was a public issue, he said, "especially for people in the Chicago megalopolis," because the inmates who do survive until their out dates put the public at risk. The bulk of prisoners in Illinois are from the Chicago area, he continued, and they will return, "quite possibly diseased," to their home communities.
The Department of Corrections agreed to let me meet with Holland in person last August but limited the interview to one hour and insisted it be conducted in the presence of an IDOC representative, who sat at a table next to Holland, taking notes. I worried that the presence of a monitor might intimidate him and prevent him from speaking freely, but he openly criticized the health care he and other inmates receive. Soon it became clear he felt he had little to lose. He was desperate. "I can't have a stomachache without thinking I'm going to die," he said.
Hepatitis C is a leading cause of liver failure and liver cancer and is the primary reason for most liver transplants. Anything with blood on it is a potential source of transmission. You can get the disease by sharing a toothbrush or razor blade with someone who's infected, by getting tattooed, or by injecting drugs with a dirty needle--the most common way. You're also at risk if you have sex with an infected partner, though the risk is lower than with direct blood-to-blood transmission. About 85 percent of people who contract HCV become chronically infected; 20 percent of them eventually develop cirrhosis. Cirrhosis caused by the virus kills between 8,000 and 10,000 people in the U.S. each year.
In the summer of 2000, a few months after Holland was transferred to Danville, surgeon general David Satcher took the extraordinary step of writing an open letter to citizens about hepatitis C. Because symptoms often don't appear until decades after transmission--after the virus has begun to wreak havoc on the liver--he called it a "silent epidemic." The majority of people who have it, he wrote, "probably are not aware that they are infected." To Satcher's knowledge, a surgeon general had written such a letter only once before--in 1986, regarding the AIDS crisis.
"Like HIV/AIDS," Satcher said at a press conference after drafting the letter, "hepatitis C is a contagious epidemic that has spread at an alarming rate." Some estimates put the number of infected people in the U.S. at four and a half million. By comparison, only one million have HIV.
Like many people with the disease, Holland doesn't know how he contracted it. He's been locked up for 23 years. It's possible he's been infected the whole time--he has a history of injecting speed, cocaine, and heroin--but he claims he was always adamant about using clean needles. He suspects the virus entered his system in the summer of 1992 through a blood transfusion related to knee surgery. Back then the blood supply was just starting to be screened for hepatitis C.
Holland is six feet tall and thin, with heavily tattooed arms. He was born in Kentucky in 1957 to a teenage mother and a father who was in the military. His parents divorced when he was a baby, and he and his mother soon relocated to Illinois, where she eventually remarried.
Holland ran away to escape beatings, but, he says, it was the 60s, "so they just kept sending me back."
The state eventually declared him a habitual runaway and sent him to the Audy juvenile correctional center when he was six years old. Over the next several years he bounced between foster and group homes. He says he was "afraid and suspicious of adults in parental roles" and that he "would run away just to insure I wouldn't be beaten--even when no one had put a hand on me."
He got high for the first time at 13 and couldn't get enough of "altered reality" after that. He soon began selling drugs. "The people I ran with--bikers, junkies, & thugs--were my 'role models,'" he wrote. "Even though I knew stuff was legally & ethically wrong, I'd do it anyway & disregard the consequences to myself and/or anyone else. I just wanted to party, regardless of all else."
Holland was locked up between 1975 and 1979 for a string of armed robberies and has been incarcerated since 1980 for rape, aggravated kidnapping, and deviate sexual assault; he's scheduled to get out in 2016. He says the couple who accused him of these crimes owed him nearly $1,000 for coke and had mentioned something about "burning" him.
He says he's changed a lot in his 23 years behind bars. He's studied horticulture, taught himself desktop publishing, earned an associate of arts degree from Lewis University, edited and written for prison publications, and learned paralegal work.
He met his girlfriend, who doesn't want her name used, 13 years into his sentence. She read through his criminal file shortly after they met and had a hard time reconciling the person she knew with the description she found on paper. "The person I met was nothing like what was described," she says. "He was a different person already."
Explaining what she sees in him, she says, "This is a man with an IQ of 154 and one hell of a sense of humor."
Back in April of 2000, when Holland told her about his preliminary diagnosis, she researched HCV and passed information on to him. Overall, the news was good: the virus could sometimes be cleared from people's systems.
Hepatitis C was first identified in the late 80s. Until recently, patients didn't have much hope. Interferon shots were the only treatment, and it wasn't much of one. The side effects were harsh and the success rate low--between 10 and 20 percent. In 1998 the FDA approved the combination of interferon and the antiviral drug ribavirin. Response rates shot up, and the toxic cocktail was hailed as a major breakthrough, despite the even higher incidence of severe side effects, which sometimes included bone marrow suppression and incapacitating depression.
Combination therapy quickly became the standard treatment, and in 2001, when the FDA approved the use of pegylated interferon, which stays in the body longer than regular interferon, it got even better. The drugs can now eliminate HCV in up to 45 percent of people with the most common of the six known genotypes of the virus--genotype one--and up to 80 percent of people with genotype two or three.
The success of the treatment--which lasts between six months and a year and can cost from $12,000 to $25,000--has threatened to overwhelm health care budgets in U.S. prisons. HCV is ten times more prevalent in prison than in the general population due to the high prison concentration of people with histories of drug use. According to the advocacy and research organization the Sentencing Project, one in five people in U.S. prisons is locked up for a drug crime and 75 percent of inmates report having a substance abuse problem.
Correctional facilities must provide prisoners with health care that meets community standards. Though some argue that prisoners shouldn't be entitled to health benefits when legions of law-abiding working poor must do without, denying or providing substandard treatment to prisoners violates the Eighth Amendment protections against cruel and unusual punishment. According to the landmark 1976 Supreme Court decision Estelle v. Gamble, "Deliberate indifference to serious medical needs of prisoners" constitutes "unnecessary and wanton infliction of pain."
But so far there are no consistent standards for the medical management of the virus in U.S. prisons. Instead, as the Philadelphia Inquirer put it on July 21, 2002, most states "are ignoring the crisis, even as prisoners are dying." At the time, only one of the 1,170 inmates with HCV in New Jersey was being treated, and that prisoner had to sue the state, a measure that is becoming increasingly common.
In the past few years, individual and class action lawsuits on behalf of prisoners with HCV have been cropping up all over the country. Last January the ACLU filed a class action suit against prison officials in Michigan over their handling of HCV cases. (One man who tested positive for the virus but wasn't informed of his status wound up infecting his girlfriend while he was on parole.)
Michelle Burrows, an Oregon attorney who's spent two years researching hepatitis C in prisons, says few states have "anything worth a damn" in place to deal with the epidemic. Her exhaustive 299-page complaint against the Oregon Department of Corrections challenges the department's practices and policies for testing, diagnosing, and treating inmates with the disease. Routine blood work that turns up the HCV antibody isn't followed up with a diagnostic test in Oregon prisons, she says. "They don't tell people they have HCV. They pretend they don't know, and they don't treat it." And she says when people do get diagnosed--usually because symptoms have appeared--prison officials typically "find every single reason in the book to deny treatment."
Burrows's complaint cites a 1998 CDC report that predicts the number of people who will die from HCV-related cirrhosis will triple in 20 years. An obvious way to curtail the spread of the disease would be to eliminate it from the prison population. "We know where this disease is, and we know how to take care of it," she says. "Nobody's doing it."
After Holland arrived at Danville in mid-April 2000, he waited for news about his condition. And waited.
Given that he'd just nearly bled to death, spent most of the previous week in the hospital, and tested positive for the antibody to a deadly disease, he felt more than a little ignored. He tried to be patient, but common sense told him that the more time passed, the worse it would be.
Two weeks went by and Holland was still in the dark. He wrote to Castro: "I need your help, Doc. These people have no immediate intention of telling me my exact situation and I need to know....I doubt they plan to follow up with the clinics you mentioned with you in Springfield."
Holland gave Castro permission to discuss his case with his girlfriend, and Castro faxed her a letter saying it was "very likely" Holland had chronic hepatitis C and would "benefit from therapy," though he again mentioned that an additional test was necessary.
A week later, Holland says, prison doctors still hadn't given him any information about either his specific condition or hepatitis C in general. Everything he knew about the disease--including ways to prevent it from spreading--he'd learned from outside sources, mostly what his girlfriend had culled from the Internet.
He wrote a letter imploring Danville's medical director, Ike Uzoaru, to take his condition seriously. "This requires your attention, sir, which is what I am seeking."
Holland says the letter went unanswered, so he filled out a grievance form the following week detailing his medical history and requesting "the treatment I need to survive." He wrote that he'd seen Uzoaru "for approximately 5 minutes" and had "received no further information or treatment specific to my illness since arriving here over a month ago."
Five days later he was summoned to the infirmary for a blood test, but another month passed before Uzoaru finally confirmed Castro's preliminary diagnosis: Holland did indeed have hepatitis C. Holland says the doctor then told him his liver, though damaged, was still functioning within the normal range.
Holland took that to mean that it wasn't too late to save his life.
But he says when he tried to consult the doctor about treatment options, Uzoaru told him there were none. "When I pulled out my stack of information off the Internet and started conversing with the guy," Holland says, "he told me point-blank he works for a medical corporation that's contracted to the state, and they're not going to allow him to prescribe something for me on an individual basis that's going to cost around $20,000 a year." (IDOC says its prison doctors aren't allowed to comment on inmates' cases.)
Holland had a hard time wrapping his mind around the diagnosis. "I feel fine most of the time," he wrote to a lawyer at the end of June. "But if I have hepatitis C that's causing cirrhosis of the liver, [Dr. Uzoaru] has wasted approximately ten weeks not treating it and allowing further damage to occur." He referred to his situation as a "medical nightmare" but said, "I don't take this personally, it's their standard operation--the minimum they can get by with because it costs less and no one will believe an inmate anyway."
Brian Fairchild, an IDOC spokesperson, denies that the department offers substandard health care to skimp on costs. Doing so would be illegal: courts have ruled that budget constraints are not a legitimate excuse for shirking constitutional obligations.
But that doesn't mean correctional institutions can't try to cut costs. Illinois, like the majority of states, does so by farming out prisoner health care to low-bidding health care providers in the private sector.
A study commissioned by the U.S. Department of Justice in 2001 ranked Illinois second lowest in the nation for spending on inmate health care in 1998. According to the study, the state spent an average of $3.45 per prisoner per day, or $1,259.25 a year. Fairchild says that today the health care budget is pushing $100 million, which means the department has increased spending per prisoner to about $2,300 a year. That's still a tenth of what the department could have to spend to treat an inmate for hepatitis C--not counting what it would cost to manage any side effects.
HCV treatment is "too expensive," says Burrows, the attorney behind the Oregon lawsuit. "But there's no choice." We've locked up more people than we can properly care for, she says.
In the 90s, with politicians riding to office on "get tough on crime" platforms, judges bound by mandatory-sentencing policies, and the war on drugs criminalizing people who might otherwise--with the benefit of rehab--be productive members of society, the number of people behind bars in the U.S. exploded, increasing by 79 percent from 1990 to 2000. Although the rate of growth is slowing, the U.S. still has the highest rate of incarceration in the industrialized world--702 per every 100,000 people.
There are consequences to warehousing people in large numbers. "If voters decide to do that, they have to assume responsibility for prisoners' care," says Burrows. It's mandated by law--and, as Holland points out, if we don't, we just might have to pay for it with more than money. "Hepatitis is communicable," he wrote. "Guys that have it in here are going to get out, & without education, and, most importantly, treatment, they WILL spread it in their community. Your community. Your readers' community." Infected ex-cons, he warns, "will be coming to your workplaces, restaurants, schools, movie theaters, airliners, buses, commuter trains, and so on & so on."
Seventy percent of patients who've had esophageal varices rupture will have second bleeding episodes, and Uzoaru scheduled Hol-land for a prophylactic rebanding in October 2001. But a month before the appointment IDOC transferred Holland again.
When he found out he was being moved to Dixon, he was glad. A former mental institution, Dixon has the largest infirmary in the state's prison system, and it has a reputation as the place to be for inmates with serious medical concerns.
But at Dixon Holland was assigned to a "loud and boisterous" six-man cell, where noise from televisions and radios and the men shouting over them prevented him from getting much rest. He slept only a couple of hours a night, and he worried that exhaustion would aggravate his condition. He requested a new housing assignment from administrators and his doctor but says he got the runaround: the administrators told him he'd need a request for medical housing from the doctor, and the doctor told him housing was a matter of security.
He wrote to the warden: "I'm stressed from tension and contention every day in this room. I'm tired all the time, in pain, and worried this situation will continue to deteriorate." But in spite of his "miserable housing assignment," he wrote, "I am ecstatic to be here."
That didn't last long. His first appointment with the medical director, Antreas Mesrobian, didn't go well. He says when he asked the doctor if he planned to treat him for hepatitis C, "he said 'no.' No explanation, just 'no.'"
Holland says Mesrobian also canceled his appointment to get rebanded. "He told me there was no need," he wrote in a letter to Dixon's health care unit administrator, Donna Drew. "His exact words were, 'If you start bleeding again we'll take care of it, but otherwise no.'"
Two weeks later, at about 9 AM on October 31, 2001, Holland began vomiting blood. He also passed black, tarry stools. A cell mate notified a guard about Holland's condition, but according to Holland no one came to his rescue. "About an hour later, I told them, 'Look, I can't sit here like this.' I was covered with blood," Holland says. His cell mate again attempted to find help, but Holland says he was ignored until the 11 o'clock head count, when a lieutenant found him "naked, covered in regurgitated blood, and so weak I couldn't sit on the toilet myself."
Holland says he waited in the infirmary for another hour while staff located his file. According to IDOC medical records, he wasn't taken to the hospital until three hours after his life-threatening hemorrhage had begun.
IDOC's Fairchild maintains that the health care in Illinois prisons is "very similar to health care that people get on the outside" with HMOs. The department doesn't make treatment decisions, Fairchild says. "That's left up to the health care contractors and the doctors who work for them."
This arrangement, however, doesn't absolve prison officials of their constitutional obligations. Prison doctors are bound by the terms of the contract that their employers have worked out with IDOC. Fairchild says IDOC's medical director, Willard Elyea, directly oversees the care of inmates with serious illnesses to ensure that the course of their treatment "is within community standards and reflects good corrections practice."
The department (which would not comment specifically about Holland's case) eventually referred Holland to the digestive disease and liver clinic at the University of Illinois Medical Center at Chicago.
Holland recalls doctors there twice saying that they planned to treat him for hepatitis C. Holland's girlfriend talked to him after one of his early appointments. "He was so excited," she recalls. "He said the treatments were scheduled to begin in two weeks."
Either Holland misunderstood the doctors or the doctors changed their minds--according to University of Illinois spokesperson Sherri McGinnis, Holland's doctors aren't available to comment--but whatever the case, treatment was not forthcoming. Holland says that on a subsequent visit a nurse practitioner told him he wouldn't be treated because he had cirrhosis. McGinnis says only that esophageal varices, which are usually a complication of late-stage liver disease, are a contraindication to treatment.
Holland isn't the only critic of health care in prisons.
A 1999 article in the Northwestern School of Law's Journal of Criminal Law and Criminology asserts that managed health care in prisons "is conspicuously different from managed health care on the outside."
The author, Ira Robbins, a professor at American University's Washington College of Law, cites cases in which inmates were denied access to necessary medical procedures, understaffing jeopardized patients' welfare, and doctors received financial rewards for delaying or denying treatment (in one case, the medical director of a prison in Florida got a $250 bonus for every 911 call he avoided). Robbins also writes of a "disturbing trend" in which "inexpensive over the counter medications" were being used in prisons to treat serious illnesses.
"Despite--or, perhaps, because of--the money saved by the government and the money made by managed care organizations," writes Robbins, "the level of health care in these facilities has decreased, and prisoner complaints and lawsuits are on the rise."
He also raises the question of whether the cost-cutting aspects of managed care render it inherently unconstitutional in the prison setting, where patients cannot choose their own doctors or health care plans. "Because of the firmly established case law holding that medical decisions cannot be based on financial considerations, financial incentives to delay or deny treatment should constitute per se deliberate indifference."
Robbins concludes, "Legislatures should consider banning private managed health care in prisons and jails."
When it comes to hepatitis C, IDOC considers "good corrections practice" that set forth by the Federal Bureau of Prisons. Under the bureau's hepatitis C treatment eligibility guidelines, the conditions that could have disqualified inmates in 2002 included recent use of illicit drugs or alcohol, major depression, cirrhosis, or less than a year left to serve of their sentence. Only 23 of the 850 prisoners in Illinois who were known to have HCV at the end of last year qualified for combination therapy. (According to IDOC's Fairchild, 75 inmates are currently being treated for HCV, and the department is tracking 250 additional cases.)
Attorney Burrows is challenging some contraindications used by the Oregon Department of Corrections that are also used by the FBOP, such as the use of illicit drugs or alcohol. "This is a punitive contraindication," she says, because there's "no medical evidence" to suggest that it would alter a patient's response to therapy.
According to Stephen Kimberley, an Oregon internist who's served as a consultant for Burrows and other attorneys involved in hepatitis C litigation, some states deny treatment to prisoners merely because they have tattoos. "This has no scientific or medical basis," he says.
Benjamin Wolf, associate legal director of the ACLU of Illinois, says prison officials, when confronted with the costly management of diseases, often "find pseudomedical reasons for denying treatment."
However, when it comes to deciding whether a hepatitis C patient is likely to benefit from treatment, standard practice is to consider the state of the liver.
Since most people with chronic hepatitis C infection don't go on to develop cirrhosis, doctors usually take a wait-and-see approach with patients whose livers aren't yet damaged. Patients whose livers are damaged but still functioning well--those who have what's called compensated liver disease--are usually thought to be ideal candidates for treatment. Experts differ, though, on whether to treat patients with advanced liver disease. Most don't, as severely damaged livers may not properly filter out toxins and the treatment could be worse than the disease.
The companies that manufacture interferon and ribavirin haven't yet tested them on these patients, so treating them would require off-label use of the drugs. While there's nothing illegal about that (witness Botox), many doctors fear getting sued if something goes wrong. As a result, says Bennet Cecil, a hepatitis doctor in Kentucky, "most liver doctors stay away from people who need treatment the most. Eighty percent of hepatitis C patients don't have cirrhosis and are not in danger of dying." Those with cirrhosis are usually between 40 and 50 years old, he says, and they "die at the speed of an 80-year-old." These are the patients Cecil specializes in treating, and he claims he's had success in doing so. If you rid them of the virus, he says, you stop the progression of liver disease and decrease the likelihood that they will develop liver cancer or need a liver transplant.
Several years ago Cecil went to court on behalf of Michael Paulley, a Kentucky prisoner with advanced liver disease. The Kentucky Department of Corrections said his cirrhosis, low platelet count, signs of decompensated liver disease, and history of depression all ruled him out as a candidate for treatment under the department's eligibility guidelines, which relied on 22 exclusion criteria adopted from other prison systems across the country. Paulley sued the department, claiming the criteria were overly restrictive and illogical--at that point not one Kentucky prisoner had qualified for treatment.
Cecil, who runs several hepatitis C clinics and was cited in the court's opinion as "the most experienced physician in the Louisville area with combination drug therapy," testified that Paulley should be treated.
The court concluded that there was "more of money than of medicine behind the Department's decision to deny Paulley treatment" and ruled in Paulley's favor. Cecil began treating him, and today, Cecil says, Paulley is "cured of hepatitis C," though still contending with liver damage.
Treating cirrhotic patients is gaining wide support. Last summer the National Institutes of Health convened a panel of experts familiar with the latest advances in treatment and research to issue a consensus statement on the management of the virus.
In February the Federal Bureau of Prisons updated its eligibility guidelines to reflect the panel's findings, eliminating several previously listed contraindications to treatment. Where last year the FBOP could have denied treatment to inmates with compensated cirrhosis (then a relative contraindication), this year inmates with cirrhosis could be first in line. According to the updated guidelines, "persons with severe liver disease, including compensated cirrhosis, are at higher risk for developing liver complications and should therefore be priority candidates for treatment." Fairchild says the change to FBOP guidelines is "irrelevant," because the department never considered early cirrhosis an absolute contraindication to treatment.
Treating patients with a history of esophageal bleeding is sometimes done on a case-by-case basis. But ruling out Holland as a candidate for treatment due to prior esophageal bleeding would still be standard medical practice--if not for a few other factors in Holland's medical history: for one, in liver function tests Holland's bilirubin (a breakdown product removed from the blood by a healthy liver) measured only 0.3 to 0.6 milligrams per deciliter back in 2000, after his first hemorrhage, and subsequent readings haven't exceeded 0.8.
"That's not consistent with late-stage cirrhosis," says Oregon's Kimberley, who has worked with hepatitis C educational and patient-advocacy programs for the last ten years. "A normal reading is 1.2 or lower. It's not until you get a reading of 4 or above that you may be beyond help--and even then there may be gallstones or other factors contributing to that bilirubin level." In addition, Holland's ALT levels, which indicate liver damage, are elevated, but only slightly--suggesting mild, rather than advanced, liver disease. And his platelet count has been on the low side at times, but it has never fallen below 75,000, the cutoff limit on the drug prescribing insert, according to Helen Te, a hepatitis specialist and assistant professor of medicine at the University of Chicago Hospitals.
Given Holland's history of esophageal varices, his lab values surprised Kimberley. "On the one hand esophageal varices are a totally valid reason for denying treatment," he says. "However, everything else indicates that his liver is not that bad."
Besides his lab values, there are other compelling indications that Holland's liver may be able to tolerate treatment. An ultrasound on October 10, 2002, suggested that his liver was of normal shape and size; a liver ravaged by cirrhosis would likely be shrunken.
Holland remembers the technician seeming surprised by the results and asking if he was sure he had cirrhosis. A "clinic note" from an earlier visit to UIC, on March 21, 2002, reveals how--in the face of contradictory evidence--the assumption that Holland had cirrhosis remained unchallenged. "The patient appeared to be extremely upset that I was telling him he had cirrhosis," the doctor wrote. "More than two years ago, a doctor had told the patient that his liver had very little damage. Again we explained to him that the only true way to [diagnose] cirrhosis is under a liver biopsy, for which he has never had. However, with this esophageal varix finding, he is presumed to be cirrhotic. He was very upset with this diagnosis. I explained to him that his liver function tests are extremely well compensated."
Kimberley's conclusion? "A clinical assumption has been made that is probably wrong." Kimberley suspects the esophageal varices "are a red herring."
"Intense vomiting and anatomical variations can cause bleeding from the esophageal veins without having varices," he says, "and without the additional presence of clear laboratory evidence of cirrhosis, I sincerely doubt that this man ever had varices related to liver failure." In other words: it's entirely possible that Holland's bleeding had nothing to do with cirrhosis and that Holland's liver may not yet be cirrhotic.
Duodenal ulcers are the most common cause of upper gastrointestinal bleeding, and Holland had one. If IDOC's medical director is, as Fairchild claims, "very familiar" with Holland's case, he probably ought to be familiar with Castro's "operative report" from April 2000, which stated, "Patient could have either bled from esophageal varices, congestive gastropathy, or duodenal bulb ulcer."
Castro went on to diagnose Holland with cirrhosis, but according to Kimberley, Holland's medical records should be setting off alarms. "The clinical picture and the diagnostic data do not match," he says. "There's an enigma here that needs to be resolved."
The only way to resolve it is with a liver biopsy--which the University of Chicago's Te calls "the gold standard" for detecting early stages of cirrhosis and assessing damage to the liver. Holland has never had one; Kimberley says standard medical practice calls for it.
"If a businessman came in with a history of esophageal varices, a history of hepatitis C, and Holland's lab values," he says, "he would get a liver biopsy. I'm confident of that. There is no way he would be written off as a lost cause without more evidence."
Without a biopsy report, doctors can't possibly know whether Holland would benefit from treatment.
Since patients with compensated liver disease are generally thought to be ideal candidates for treatment, since Holland's UIC doctor admitted in a clinic note that Holland was only "presumed" to be cirrhotic, and since there's no way to definitively assess the state of his liver without a biopsy, why didn't the doctor order one?
Kimberley suspects it was deemed too expensive. A biopsy, he says, would run the state "well over a thousand dollars."
Prison doctors have to ration expensive treatments, he says, so they "look for reasons not to treat." In Holland's case, they found one. "Esophageal varices are usually a clear indication of cirrhosis," he says, so it seems the doctors have prematurely "glommed onto that and said, 'Well, forget him.'"
Kimberley thinks it's a mistake not to explore Holland's case further. "He may be an excellent candidate for treatment."
The Department of Corrections maintains that Holland's liver is too far gone for him to benefit from hepatitis C treatment. But if it is, then IDOC missed the opportune moment to treat him, as Holland's been in IDOC custody for more than two decades.
As early as 1998, the CDC was recommending HCV testing for anyone who'd ever injected illegal drugs, including "those who injected once or a few times many years ago," anyone who'd had a blood transfusion before July 1992, or anyone who'd had persistent abnormal ALT levels.
Holland says the department never offered him a test, though he was clearly in a high-risk category.
He also says there were indications that something was wrong with him years before his first hemorrhage. Back in 1994, he says, he took blood tests as part of an annual physical. "When the blood came back," he says, "the guy didn't like my iron levels and my platelet count, but he said it wasn't enough that he was worried about it. They never investigated to find out what was wrong."
Holland says he asked about the results at subsequent physicals. "Every year I questioned medical staff regarding the apparent anomalies with my liver and was told it 'wasn't anything to worry about,'" he wrote in a grievance dated May 20, 2000.
If his liver is damaged but still functioning well, as a battery of tests indicate, then prison officials, it would seem, have a constitutional obligation to treat him. "Even if it doesn't cure me," he says, "it'll still stop or slow damage to the liver."
Without treatment, Holland--who was recently transferred again, this time to Pinckneyville--may not survive to his release date in 2016. If that's the case, he says, IDOC would in effect be overriding his judge and jury and imposing a sentence of death.