Just Treatment: Exploring Cancer Care for Prisoners

Prisoners are among the only U.S. citizens with a constitutional right to health care.

That irony will anger some and perplex others, but prisoners are by definition wards of the state. When we take someone’s liberty, we also take responsibility for their food and shelter, their security and health. But behind bars, perhaps even more than in America at large, health care is inconsistent in its availability and quality.

Many prisons and larger jails have created their own medical systems, such as those in Wisconsin and California, and may subcontract specialist health care with university and private facilities. But as of 2012, more than 20 states — often chasing the promise of cost control — had hired private contractors like Corizon Health and Correct Care Solutions. “Every state, every jurisdiction, is like its own individual fiefdom,” says Brie Williams, M.D., director of the Criminal Justice & Health Program and the Criminal Justice and Aging Project of Tideswell at the University of California, San Francisco. “When you’ve seen one prison or jail, you’ve seen one prison or jail.”

Corizon agreed in emailed comments screened by its lawyers.

“Nothing is withheld, but not everything is doable, because every institution is different. I can’t emphasize this enough: There is no typical,” Richard Kosierowski, M.D., director of oncology services for Corizon, said. “Care is not that different from what a patient in the community would experience. The difference is that, because of security costs and needs, it is a very complex method of delivery.”

Humane and curative care surely happens in prisons. Some prisoners get their first regular health care, leading to prevention and early diagnosis. The hospice movement is taking root, offering both compassionate end-of-life care and redemptive work for some inmates.

But there are too many disastrous cases, caused by no or slow investigation into cancer’s red flags: unexplained pain, massive weight loss, palpable tumors. Horror stories about prisoners dying bit by bit before the eyes of unresponsive prison workers make alarming headlines, and some end up in court.

Overall, the sprawling U.S. penal system is simply too diverse for blanket statements. Despite comprising less than 5 percent of the world’s population, the U.S. detains more than one-fifth of the world’s inmates. In 2017, there were 1,719 state prisons, 102 federal prisons, 901 juvenile correctional facilities, 3,163 local jails and 76 Indian Country jails, together holding 2.3 million in custody, according to the nonprofit Prison Policy Initiative. Prisons hold state and federal inmates, typically for sentences longer than a year, whereas jails are for those serving shorter sentences in counties and cities. Their walls contain a growing number of patients with cancer, some of whom read CURE® and send occasional letters about their circumstances.

Despite the wide range of experiences, unifying themes have emerged: the powerlessness of prisoners to drive their own health care and the staggering increase in the age of the prison population. From 1981 to 2016, according to the American Civil Liberties Union (ACLU), the number of state and federal prisoners aged 55 and above soared from 8,853 to 124,900. The 2030 projections top 400,000.

Mostly, the incarcerated are ignored. The rare public spotlight on prison health oscillates between outrage over human rights and alarm over cost.

Garnering less attention is the dilemma of a prisoner who, expecting release in a few years, receives a potentially terminal diagnosis. The extra test, second opinion and clinical trial are largely out of reach. Judge and jury did not intend for this individual to die in prison, but will the difference between care inside and out become a death sentence? And if treatment fails, should dying behind bars be part of the punishment, too?

PRISON HEALTH CARE: IT’S THE LAW

“I’m not sure we’re a better society for letting them die alone and uncomfortable,” says Michele DiTomas, M.D., M.S., who runs a hospice for the California Department of Corrections and Rehabilitation. “I think we are a better society if we help people die with forgiveness and closure and comfort.”

Correctional institutions are required to address inmates’ health problems.

That principle achieved the force of law in 1976, when the Supreme Court ruled on Estelle v Gamble, which began when a Texas prisoner was injured by a falling 500-pound cotton bale. Gamble lost his case, but the landmark decision stands: “Deliberate indifference by prison personnel to a prisoner’s serious illness or injury constitutes cruel and unusual punishment contravening the Eighth Amendment.”

Medical care must meet community standards, but the legal record paints an unsettling picture of our constitutional commitment since then.

Take, for instance, the cases described in recent letters from the Prison Law Office, a nonprofit California firm that works to improve conditions for incarcerated people, to the Arizona Department of Corrections (ADC).

“This is the tenth time my office has written to you about delays,” begins one letter. “We remain deeply concerned about the serious and ongoing errors and delays in his medical care,” ends another.

When a 37-year-old woman with a family history of early breast cancer asked for a mammogram in April 2017, the Perryville, Arizona, prison denied the request, saying she was too young and lacked symptoms.

However, no physical exam was conducted, and on May 27, she reported a golf ball-size lump in her right breast. A diagnostic mammogram requested on June 8 was performed July 7. An Aug. 4 biopsy led to a surgical consult on Aug. 30, after which the doctor wrote: “Patient needs oncology consult ASAP!!” A biopsy after a Sept. 29 surgery revealed that the patient was BRCA mutationpositive with triple-negative breast cancer, but she did not see an oncologist until Nov. 15. Delays continued into January; by then, the woman also had a uterine mass and a new lump in the opposite breast.

These letters exist because, in 2014, the ADC settled a class action lawsuit on behalf of 33,000 Arizona prisoners alleging a systematic violation of their 8th amendment rights against cruel and unusual punishment because of both inadequate health care and the correction department’s punitive approach to mental illness. Without admitting guilt, the ADC agreed to a settlement requiring it to meet more than 100 health care performance measures.

Yet the ADC hasn’t entirely met the terms of that settlement. At a federal hearing in February, the judge threatened fines for about 1,400 violations disclosed in December and January alone. In March, the judge threatened ADC with contempt charges. Meanwhile, the corrections department has both blamed Corizon and rewarded it financially.

Prisoners sue their jailers frequently — sometimes frivolously, sometimes with just cause. But jailhouse lawyering should not be confused with the dozens of class-action lawsuits that have spotlighted health care deficiencies in correctional systems at every level, compelling reform efforts in many states. “Anything that we know about correctional health care is based primarily on litigation,” says Josiah Rich, M.D., M.P.H., of the Center for Prisoner Health and Human Rights at Brown University in Providence, Rhode Island.

A 2006 class action filed by the ACLU against Wisconsin for health care failings at the women’s Taycheedah Correctional Institution provides one example. That action was dismissed with the ACLU’s blessing in 2016, after the state worked to improve conditions for its prisoners. “The impetus for the improvements at the prison was the litigation,” said Larry Dupuis, legal director of the ACLU of Wisconsin, at the time. “But the medical leadership team has demonstrated a commitment to improving the quality of care that we expect them to maintain in the future.”

In a wide-ranging interview, James Greer, director of the Bureau of Health Services at the Wisconsin Department of Corrections (WDC), touched on many cancer-related issues, from drug prices and psychological support to compassionate release and the development of a prison hospice staffed by 50 trained inmates, where families can visit anytime. He also touted new strategies to treat HIV and hepatitis C, classes for yoga and mindfulness, and a pilot program in counseling about prediabetes.

POWERLESS AND SICK

DAVID FATHI, director of the ACLU's National Prison Project - PHOTO BY JENNIFER HEFFNER

DAVID FATHI, director of the ACLU's National Prison Project - PHOTO BY JENNIFER HEFFNER

“Aging is one of the big issues in corrections across the country,” Greer adds. Wisconsin is getting ready to build the state’s first nursing-home unit, a 60- to 70-bed facility at a minimum-security complex. “We’re going to ask for another one, probably, in the next budget. We have close to 700 prisoners over 65,” he says. Piecemeal victories like Wisconsin are important, but they do not convince David Fathi that U.S. prisoners get proper care.

“Health care in prisons varies from barely adequate to almost nonexistent,” says Fathi, director of the ACLU National Prison Project, which supports prisoners’ legal rights. “Prisons are closed institutions, and prisoners are an unpopular and politically powerless group. It’s a recipe for neglect and abuse.”

For one thing, prisoners remain at the mercy of their caregivers, who may be either engaged and empathic or overworked and disconnected.

JACK BECK, of the Correctional Association of New York, says the prison environment is not conducive to good health care. - PHOTO BY BEN HIDER

JACK BECK, of the Correctional Association of New York, says the prison environment is not conducive to good health care. - PHOTO BY BEN HIDER

“They are inmates first and patients second,” says Jack Beck, Prison Visiting Project director of the Correctional Association of New York, which has legislative authority to inspect the state’s prisons. “Unfortunately, many providers become totally biased. They don’t trust or believe their patients. The environment is not conducive to good health care. The resources are not adequate to good health care.”

The path to informed advocacy is also blocked.

Prisoners generally do not have access to the internet, severely limiting their ability to research treatment options. Outside family members can assist, but they are not typically permitted to accompany prisoners to appointments and, even with proper privacy clearance, can struggle to get complete information.

PAYING FOR PRISON HEALTH CARE

What’s more, the advocacy now common in cancer treatment runs counter to the correctional culture of control. Prisoners often don’t even know when their appointments are. “Self-advocacy in prison is punished,” says Laura Whitehorn, who spent 14 years in a federal prison during the height of the AIDS epidemic and became a health advocate after her release. A friend of hers in prison who found breast lumps actually withheld that information during a parole hearing. “To advocate for yourself is seen as trying to make yourself more than a prisoner,” Whitehorn says.

Meanwhile, corrections, like everybody else, is struggling with rapidly climbing health care costs.

A 2017 analysis of state prison health spending by The Pew Charitable Trusts shows remarkable variation in spending per inmate in 2015 — from $2,173 per year in Louisiana to $19,796 in California. The 49-state median was $5,720. Care for federal prisoners cost $7,958 per capita in 2015.

Compare that with median health care spending across all U.S. residents, which was $8,045 in 2014. Louisiana’s median for citizens across its entire population was $7,815, much more than it spent the next year on health care per inmate, and California’s per capita health care cost was $7,549 in 2014, much less than it spent per inmate the following year. Arizona residents spent $6,452 per citizen overall in 2014, compared with $3,529 per prisoner in 2015.

Across the board, in fiscal year 2015, state correction departments spent $8.1 billion on prison health care services, about one-fifth of prison expenditures overall, according to Pew. The federal government paid another $1.3 billion. Neither Pew nor the government break down spending by disease, but Peter Lee, Pharm.D., M.B.A., vice president of clinical pharmacy services for Corizon Health, says its cancer spending jumped from about 3 percent of total costs in 2016 to about 4 percent in 2017. Federal spending on drugs also is accelerating steeply, attributed partly to cancer biologics.

Correctional budgets are already challenged by costly breakthrough treatments for hepatitis C, a disease 10 times more common in incarcerated populations than in the general public.

Some states already administer the drugs to prisoners; in at least nine states, class-action suits demand access. New York was an early adopter, spending about $140 million between 2014 and 2017. Furthermore, due to budget cuts and policy errors, the U.S. penal system has become the country’s default mental health provider, another big expense.

JUST TREATMENT?

As more expensive targeted and immunotherapies for cancer become standards of care, the squeeze in correctional budgets could get even more serious. Some of these novel drugs cost $150,000 or more per patient, per year, or even $400,00 for a one-time treatment with chimeric antigen receptor T-cell therapy, and those often constitute just one element of overall treatment. Most experts interviewed by CURE® didn’t specify whether prisoners have access to these expensive therapies, or, if so, how the system pays for them. In addition, care and monitoring of side effects can be particularly challenging — a troubling scenario for a generally undereducated patient base and understaffed facilities.

That cancer is now the leading cause of death in federal prison is a surreal combination of simple aging and a throw-away-the-key approach to criminal justice that began in the 1980s and is now regretted by many jurisdictions. In the 1980s, U.S. incarceration rates climbed precipitously and prison terms lengthened. A backlash to this mass incarceration has been building in response to overcrowding, budget stress and accountability.

Some argue that rehabilitation seems less valued than a cheap prison labor force. Among the loudest voices are those critiquing the apparent racial and economic prejudice of the system, which locks up a greater percentage of black men than even South Africa did under apartheid. Poverty is also punished. Among black men, more than half of the poorest fifth are likely to be jailed at some point; for the top fifth, the probability tumbles to 14 percent.

Perhaps the most damning statistics were crunched by the Department of Education in 2016. Analyzing the period between 1979 and 2013, it found that public school spending rose by 107 percent compared with a 324 percent increase in corrections spending.

Race and poverty also fuel health disparities, with evidence of a vicious feedback loop between public health and corrections. A 2017 paper in leading medical journal The Lancet titled “Mass incarceration, public health, and widening inequality in the USA” highlighted several studies suggesting “that states with large numbers of former inmates have poorer-quality health-care systems, lower life expectancy, and higher incidence of HIV infection and infant mortality than do states with few former inmates.”

As a group, prisoners have had historically poor access to health care even before incarceration: inadequate PAP tests for cervical cancer surveillance and little to no screening for breast, colorectal or prostate cancer. “It goes on and on,” Rich says. “The prevalence of cancers is going to be higher.”

Higher rates of HIV mean more HIV-related cancer.

Higher rates of hepatitis and alcohol abuse mean more liver cancer. Higher rates of smoking mean more lung cancer. Smoking and drinking combined mean more head and neck cancers.

Research comparing people in and out of custody suggests that prisoners over age 50 are more likely to have the health problems of people 10 to 15 years older. “As the prison population ages in this country, which it is doing due to extremely long sentences, it’s become even a needier population from a medical standpoint,” Fathi says. The trend has engendered bipartisan discourse over the failures of mass incarceration and how to reverse them.

“This is an obvious place where we can re-examine our over-reliance on mass incarceration,” Williams says, “and really question whether or not the criminal justice system, the correctional facilities, prisons and jails are the right place for these people.”