Jeffrey Muller sits in an office adjacent to the reading room at the University of Michigan Law Library on a rainy December day. His looks match the weather.
His skin has a yellowish tinge. His hands shake with a slight tremor. His voice is timorous. It seems an effort to get the words out. “I’m a lot sicker than I look,” he says.
And he looks like he belongs on Kevorkian’s short list.
Until a few weeks ago, Muller spent the past 18 years in Michigan prisons after convictions for breaking and entering an unoccupied house, armed robbery of a convenience store, felony firearms violations and dealing small amounts of drugs.
An avid runner in his early days as an inmate, he began having health problems in 1995. Muller was eventually diagnosed with end-stage cirrhosis of the liver, a condition brought on by hepatitis C. His only chance to live beyond the next year or so is a liver transplant.
While in prison, Muller sued the state to get better treatment for his disease. When he was unexpectedly paroled in November he dropped the lawsuit. He is now on Medicaid and he remains on the transplant list, waiting along with others for the call that will give him a new liver.
But his crusade to get treatment prompted students at the University of Michigan’s Clinical Law Program to file a class-action lawsuit aimed at ensuring that other Michigan prisoners with hepatitis C get better treatment, including liver transplants.
There are a lot of them.
Michigan correctional officials concede that some 15,000 of the state’s nearly 50,000 inmates are infected with the virus. The medicines to treat and in some cases cure hepatitis C cost an estimated $15,000 per inmate.
And liver transplants cost about $250,000 each, not counting follow-up treatment costs. If 10 percent of the 15,000 infected Michigan inmates got transplants today, the price tag would be $375 million, plus follow-up.
“It is going to be extremely costly,” says Scott Chavez of the National Commission on Correctional Health Care, a nonprofit group that examines prison health care issues. “Taxpayers are going to be asked to pay an unbelievable amount of money. It will definitely break the budgets of most state correctional departments.”
Mary Dettloff, a spokeswoman for Gov. Jennifer Granholm, says the governor takes the looming problem of hepatitis C in the prison system very seriously.
“We understand it and we will do everything we can to provide service, but everything is cast in the light of the deficit we’re facing in this state,” she says. “We’re facing an enormous budget problem.”
Todd Harcek, chief of staff for House Appropriations Chairman Marc Shulman, R-West Bloomfield, says that money specifically to treat hepatitis C has been proposed in the past, but funds have never been approved.
“It’s going to be a draining area in the corrections system,” Harcek says. “If you give someone a million-dollar transplant and he’s in for life, is that appropriate?”
Harcek says lawmakers need to take the larger view.
“I think a prison is going to become more like the prison that the public demanded,” Harcek says. “If it’s a question of whether health care dollars outside of prison is a priority vs. health care dollars in prison, the public is probably going to demand that those outside of prison are the first priority.
“But the state does have an obligation. We’re bound by law and moral issues. So it’s going to be a balancing act. Health care costs are straining every budget in this country.”
Muller recalls the first time he learned of the severity of his condition and his conversation with the prison doctor who made the diagnosis.
“He essentially said, ‘Convicts don’t merit liver transplants. There’s a short supply. Livers are scarce. You’re going to die. You dug your hole. You made your bed. Accept it like a man.’”
Hepatitis C is sweeping through the nation’s prison systems. While the virus affects less than 2 percent of the U.S. population, Dr. Anne Degroot, who heads a prison health education project at Brown University in Providence, R.I., estimates that 30 percent to 40 percent of the prison population is infected, which is consistent with the estimates of Michigan officials.
This means that, conservatively, more than 15,000 of Michigan’s nearly 50,000 inmates have hepatitis C.
(Both hepatitis B and C in their chronic stages can cause long-term damage to the liver. However hepatitis B less frequently progresses to the chronic stage. There is a vaccine for hepatitis B, but not for hepatitis C.)
Hepatitis C is most commonly spread through needle sharing, both through intravenous drug use and tattooing, and unprotected sex. Until screening began in 1992, blood transfusions were a major transmitter.
Hepatitis C is the most common chronic blood-borne infection in the United States. It causes 8,000-10,000 deaths in this country annually, a rate that will triple in the next two years, according to the National Foundation for Infectious Diseases.
The virus usually progresses so slowly that no symptoms may appear for 10-20 years after infection. By the time symptoms do appear, liver damage has already begun. Eighty percent of cases become chronic.
Left untreated, about 15 percent of those with the chronic disease develop cirrhosis, the Centers for Disease Control reports. But those numbers rise significantly for older people, males and those who have a history of alcohol or substance abuse — factors common among prisoners.
Treatment of combination therapy with pegylated interferon and ribavirin is effective for about 60 percent of those infected, the CDC says. But the treatment is expensive and often causes severe side effects. Transplants for inmates are extremely rare, but could increase in an aging prison population and as litigation forces states to treat infected inmates.
Money factors aside, the epidemic raises a thorny moral dilemma. When an inmate receives a heart or liver transplant, someone else — usually a law-abiding citizen — is deprived of that organ. Because they have broken the laws of the state, should the state eliminate inmates from the benefits shared by those who keep the laws?
‘Cajoled and begged’
Jeffrey Muller is 50. He grew up in Grand Rapids and received a Catholic school education.
“In the summer of ’69 I made what turned out be a series of poor choices which, by the end of ’73, landed me in prison,” he says. Muller blames “a total disenchantment with everything American” and experimental drug use for his problems. But mostly he blames himself.
“I looked up one day and when the smoke cleared, I was in Jackson prison.” He shared needles and received a blood transfusion when he was young but says he will never be sure how he became infected with hepatitis C.
After he learned of his disease in 1996, Muller became a master of the prison grievance system. He was resourceful in his efforts to get better medical treatment. “I cajoled and begged and threatened and did everything else I could do, all to no avail.”
The needed interferon and ribavirin were denied.
In 1997 his liver damage caused blood vessels to burst in his esophagus and he almost bled to death. His immune system became dangerously weak. And he says that the correctional system continued to construct barriers to treatment.
He recounts the time that his diuretics were discontinued and he became bloated. When he was ordered to urinate as part of the drug testing required for him to remain on the transplant list, he was barely able to provide a sample. A guard examined it and told him that it looked adulterated. When Muller was unable to urinate again, he was given a disciplinary ticket for substance abuse. “They could have told me I could go home and I couldn’t have urinated,” Muller says.
The sample he initially gave was eventually tested and came back negative for drugs or adulteration.
With his immune system compromised, he was transferred to a prison with a large transient population, where his chances of getting sick increased. When Muller became ill, he was placed in a hospital room next to a patient suffering from a severe respiratory infection. His request to be moved to another room was denied.
And in an outrageous incident that is currently the subject of an Michigan Department of Corrections investigation, Muller was removed from the transplant list when a urine sample he gave came back positive for marijuana. Muller says the guard refused to seal the sample in his presence. In a hearing report, the guard who administered the test said there was “no possible chance” the sample was another prisoner’s.
Muller swore that he had not used drugs, but even his attorneys and family were skeptical. “My brothers are all saying, ‘Well, it doesn’t really surprise me,’” Muller says.
Muller’s attorneys say they sought to get the sample back, but MDOC officials claimed that it had been destroyed. In fact, the testing company still had the sample. It was subpoenaed and subsequent DNA testing showed that it was not Muller’s.
Muller has been restored to the transplant list, but after the positive test he was off for months with no way of knowing if he would ever get back on.
“That was pretty devastating. I had fought and battled for so long and tried to keep a positive attitude. Because even the people who had stood behind me and really believed in me, including my family, they really questioned me.”
Muller is convinced that someone deliberately tried to kill him.
“They were bound and determined to keep me off the transplant list. Whether it was a financial decision or a political decision, I don’t know.”
Cruel and unusual
David Santacroce is a clinical-assistant professor in the Michigan Clinical Law Program at the University of Michigan. He provides backup and oversight while students in the program get hands-on legal experience representing clients who cannot otherwise afford it. The students and Santacroce are Muller’s attorneys.
The lawsuit Muller filed in 1999 in an attempt to get medical treatment was rejected because it lacked the proper cover page. Muller then sent a letter to the Clinical Law Program, one of hundreds the program receives annually from people asking for help.
“There was student interest for this,” Santacroce says. “They were very interested in a guy who was in jail for so long, and he had really accomplished a lot since he went to jail. He’s a really talented guy who made some mistakes around drugs. It was an interesting issue — whether this guy was a candidate for a transplant.”
The standard for inmate health care was established in a 1976 Supreme Court case. In Estelle vs. Gamble the court ruled that “deliberate indifference to serious medical needs of prisoners” violates Eighth Amendment protections against cruel and unusual punishment.
“Under the Eighth Amendment you have to treat a prisoner’s serious medical needs,” Santacroce says. “A broken arm is a serious medical need, much less end-stage cirrhosis.”
Christine Vaughn, a U-M law student who worked on a class-action suit on behalf of prisoners with hepatitis C, says prisoners are not getting treated.
“They’re not providing medication; they’re not doing adequate testing; they’re not doing education to prevent it from spreading. They’re causing the future need for transplants,” Vaughn says.
Raphael Goldman, another student who worked on the lawsuit, says that taking the treatment burden off the states makes sense in the long run.
“I think the cheapest and most effective solution is to have a federal program that pays for testing and treatment in prisons,” he says. “That would make it cheaper on the federal government in the long run. They’re going to have fewer people on Medicaid and Medicare with end-stage liver disease.”
One certain consequence of denying treatment is a morbid result.
Says Santacroce: “The problem is that if you don’t treat early, and now you’ve got chronic liver disease so we’re going to dump you, you’ve killed that person.”
And that is unjust, Goldman says.
“We haven’t sentenced them to death, we’ve just sentenced them to prison.”
A body in a shambles
“My quality of life is severely compromised at this time,” Muller says, in classic understatement.
His liver is changing to scar tissue, impeding the flow of blood to his portal veins and arteries. His spleen is swollen to about 10 times its normal size. His body cannot metabolize sodium; he needs diuretics daily. He is short of breath and his mental acuity often falls off. His immune system is almost gone. His white cell count is minimal, making him susceptible to viruses and infections of all kinds. When he takes antibiotics, he sometimes becomes delirious.
Muller expected to be freed in 2004 but was paroled without explanation in November. He went directly from prison to the emergency room of a hospital. Yet he hangs on gamely.
“Patience is indeed a virtue,” he says. “You either develop it, nurture it, cultivate it and become intimate with it or you turn into a stark raving idiot living in the places I’ve been for the last 18 years.”
‘We’re handling it’
Officials from the Michigan Department of Corrections agree that hepatitis C in the prison system is a crisis. And they acknowledge that it threatens to break the department’s budget.
“I would say it is a crisis in prison populations throughout the country. I don’t think it’s any more a crisis in Michigan than it is in any other system,” says Dr. George Pramstaller, chief medical officer in the department’s Bureau of Health Care Services. “Because of the demographics, it is a very costly and complicated situation that has to be dealt with.”
Although the state does not routinely test for hepatitis C, Pramstaller says he believes that between 30 percent and 35 percent of state prisoners, more than 15,000 inmates, are infected.
Richard Russell, a registered nurse and administrator for the Bureau of Health Care Services, says that while hepatitis C is a big problem, MDOC is doing the right thing by the prisoners.
“We’re handling it appropriately,” he says.
The officials say that Centers for Disease Control and National Institutes for Health guidelines suggest treating hepatitis C only after symptoms of liver disease appear. Since only 15 percent of chronic patients suffer permanent liver damage, officials say that giving the interferon drugs to every inmate with the virus would be both costly and dangerous in view of the drugs’ side effects.
But the current policy — waiting until symptoms appear — means that some 2,000 inmates need or will need treatment. Pramstaller says that only 47 were receiving the interferon medications as of December.
Inmates can grieve their medical treatment from the local prison to the regional office to the state office. They can also get a lot sicker as the grievance steps are played out.
And even though Pramstaller says that “in a perfect world” he would offer annual testing of liver enzyme levels that can indicate hepatitis C, he believes the system is working.
“We feel we have an accurate way of assessing those people who are in need of treatment for hepatitis C,” he says.
Pramstaller says the numbers of prisoners needing medication will go up. And although he says transplant facilities have resisted assessing prisoners, there will be prisoners who need the transplants. There is no money in the corrections budget for these expenses. Pramstaller and Russell say the Legislature must solve the problem.
Funding, says Russell, “is really not our job. … What we do is define adequate care. It’s really up to the legislators to decide where the money will come from. Hepatitis C has been an ongoing discussion for the last two years at appropriation committee meetings.”
MDOC pays Correctional Medical Services, the largest national prison health care provider, a monthly fee for every inmate without regard for what health services have been provided. So the less care CMS doles out, the more money the company makes.
Critics say this gives CMS an incentive to deny such services as medication to suppress hepatitis C. But Ken Fields, spokesman for St. Louis-based CMS, says that day-to-day medical decisions are made by individual physicians. Pramstaller confirms that this is the case and that medical decisions are reviewed later against national standards.
The CMS contract runs until March 2005 and until then, that company will be responsible for treating inmates with hepatitis C. But if needed treatment is denied a prisoner, the state bears a legal obligation. And CMS is very much aware of expenses involved in the looming hepatitis C crisis.
CMS renewed its contract in New Jersey last year, but only with the stipulation that the state assumes all costs related to hepatitis C treatment. According to the Philadelphia Inquirer, CMS estimated that if 75 percent of New Jersey inmates were tested, the annual cost to the state for testing and treatment would be $8.4 million.
Russell says progress is being made on the medical front to provide less expensive and less caustic drugs. But until they come into use, expect to see more medical paroles for end-stage patients. Some call this practice of letting patients near death back into society “prisoner dumping.” It gets the inmate off one form of public dole and onto another to keep costs and mortality rates in the corrections system down.
This is not so, says Russell.
Medical paroles, he says, are “very much a humanitarian gesture. It has nothing to do with expenses. Inmates almost universally prefer not to die in prison; they prefer to die in society. We attempt to do that.”
Penny Ryder has been a prisoner-rights advocate for American Friends Service Committee for 15 years. She and others on the small staff work out of a heated outbuilding in Ann Arbor. The accommodations could be generously described as modest.
Ryder exudes a bright outlook despite the ambience of her workplace and a salary that does not approach what she could earn with her nursing degree. Ryder is doing a job that she loves.
“I try to give the inmates hope and I think that’s one of the things we’re here for — so that they don’t totally give up,” she says.
Ryder says that the quality of prisoner health care in Michigan is getting steadily worse.
“People are not getting treated,” she says. “It’s just one thing after another. Sometimes you think ‘How can all these things happen?’ It’s just constant.
“I don’t ever have to dig into our files to find some atrocious thing that has happened. It’s just ongoing. I’m really worried that because of the budget right now that it is going to get worse. This hepatitis C problem is definitely finances. They don’t want to pay for the treatment.”
Ryder says that MDOC’s policy of dumping prisoners got into full swing last year.
“They started having these medical paroles — paroling people just before they die. They’ve never done that before. I personally believe that they know those numbers are going up and they would rather get them out of the prison so they don’t have to take those deaths on their watch.”
She points out that hepatitis C is not just a prison problem.
“This is a contagious disease,” she says. “If they get out of prison and still have the disease, it’s a problem for our entire society.”
Ryder says that the inability to get prisoners the care they need is frustrating all around.
“They get angry. They get frustrated. They hate the system already. They came to prison to be punished. They didn’t come to prison to die.
“And, yes, I get frustrated. But I won’t give up. And that’s what we tell the prisoners. They can’t give up. Because then the system did win.”
The end game
Perhaps surprisingly, Muller agrees that status as an inmate should play a part in whether a person should receive an organ transplant.
“It is a part of the decision-making process,” he says. “The medical people involved have made the decision that simply because a person is locked up is no reason for a blanket denial of transplantation. I think that’s fair. I think it’s also fair that somebody who raped his mother and killed the people in the house next door and is doing six natural life sentences and has no redeeming qualities. … I think those are all valid considerations.”
Still, he chafes at the lock-the-door-and-throw-away-the-key attitude that he says he has encountered time after time in his quest to get treatment.
“Intellectually it angers me. It offends me … Emotionally it doesn’t anger me. Not the way you might think it does. Because I consider the source.”
And so since 1995 Muller has played a waiting game, filling out the paperwork, moving incrementally toward a goal, hoping to get there before the clock runs out.
“I try to be positive. I try to find the humor and the irony in the situation, rather than panic about it,” Muller says.
“You can sit and let it all chip away at you. You can bang your head against a wall and then when it’s all over, you haven’t accomplished anything other than your head hurts.”
Muller has modest expectations for the future.
“A checkerboard and a fishing pole,” he says, smiling. He earned a bachelor’s degree in behavioral science while in prison and intends to enroll in the master’s of social work program at Grand Valley State College.
“I’m 50 and I’d like to finish grad school,” he says “I’d like to think I might have 10 or maybe 15 more good years where I could be productive in some socially acceptable fashion. If that doesn’t come to pass, then it doesn’t. I’m just taking it one day at a time now and marveling at the wonder of all of it.”
Muller lives quietly now with relatives in the Grand Rapids area. He remains upbeat about receiving a liver transplant.
“I think my chances are good. I’m doing everything I can do to maximize the chances of being around when my turn comes.”
Absent a transplant, he thinks getting to 2004 is an iffy proposition.
“But I’ll see the summer of 2003, because I’m going swimming again before I die,” he says. “Outside in Lake Michigan or in an ocean. I haven’t been swimming in 18 years.
“I accept everything that’s happened to me,” Muller says. “I’ve resolved all of that. The blame lies with me, it doesn’t lie anywhere else and if I had it all to do over again, obviously I’d do it differently. So I don’t gnash my teeth about it because it’s not going to do any good.
“And I count my blessings. People still care about me after all I’ve put them through. It’s a blessing for me to wake up and have a dog at the foot of my bed. It’s a blessing for me to get up at night and go outside and look at the stars. I find a lot of joy.”
University of Michigan Clinical Law students sue for better testing and treatment.
Should convicted felons be on organ transplant lists? Tom Schram is co-chair of the National Writers Union of Southeast Michigan. E-mail him at email@example.com