Rear view of a patient at the hospital looking through window

Why cancer patients leaving prison struggle to get care

People who have been incarcerated are more likely to die when they have cancer than those who were never in prison, recent research suggests – an effect of systems that have not been designed to care for individuals when they are in the criminal justice system or after they’ve been released.

That systemic bias further fuels stigma against them and perpetuates disparities in health care access and outcomes, said Dr. Emily Wang, co-author of a study published in September in the journal PLOS ONE and the founding director of the SEICHE Center for Health and Justice at the Yale University School of Medicine.

“Being behind bars is worse for your health outcomes,” Wang said.

In the study, researchers analyzed a decade of data from more than 216,000 adults in Connecticut who were diagnosed with invasive cancers. This data included hundreds of people diagnosed while incarcerated or within a year of their release from a correctional facility. Researchers also checked the survival rates at five years and overall for the study’s subjects.

Compared to people who were never incarcerated, the researchers identified a “significantly higher” risk of dying from cancer for those who either had been diagnosed while in jail or prison or shortly after their release. Justice-involved individuals were also more likely to be younger, male and Black or Latino, compared to those who were never in a correctional facility.

“Cancer prevention and treatment efforts should target people who experience incarceration and identify why incarceration is associated with worse outcomes,” the authors wrote.

Nearly a third of deaths during incarceration are cancer-related, the study found. Much data has shown that people leaving correctional facilities encounter barriers in accessing public health insurance, such as Medicaid, according to the researchers.

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Communities can legally discriminate against people who have been in jail or prison, and health care workers may withhold care from them. Their health records may not follow them from one facility to the next, much less when they exit state custody, further delaying their ability to connect with needed screening and treatment. These obstacles delay a patient from receiving cancer-related care, including screening, treatment and check-ups – delays that many people who were formerly incarcerated can’t afford to endure.

“You can see how this intricate web of laws and policies and practices really constrain your ability to meet your basic health needs following release,” Wang said. Five decades of mass incarceration have widened health disparities, she said.

Lack of access ‘is about punishment’

Those health disparities are not an accident – they are part of a system of punishment designed to inflict pain even after a person serves their sentence, experts told the PBS NewsHour.

More than 45,000 state and local laws across the nation further entangle a person’s attempt to access cancer care upon release. Referred to as collateral consequences, these laws can block a person from securing housing, serving in the military, working and more. That matters when a medically fragile person is trying to start over and get the health care they need before time runs out for them.

Often, people who are diagnosed with cancer either within a correctional facility or shortly after their release are not treated with the “normal sense of urgency” compared to someone sick with cancer who has never been incarcerated, said Dwayne Watterman, who directs facilities for New Jersey Reentry Corporation, a post-incarceration program designed to help people reestablish themselves and avoid systemic pitfalls that often lead to cycles of reincarceration. In 2022, Watterman said his team helped more than 17,000 people at 10 sites across the state rebuild their lives.

But that process is far from easy, he said. People who are transitioning back into life outside of a correctional facility often lack the bureaucratic keys – such as a birth certificate, a driver’s license or a Social Security card – that could unlock a new job, an apartment or health insurance.

Requesting and receiving those critical pieces of identification can take months, Watterman said. For clients who are struggling with poor health, he added, those delays are agonizing and typically met with little sympathy.

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“It’s about punishment,” Watterman said. His clients often encounter attitudes from health care and social services systems that suggest, “It’s OK for them to be in this situation, and this is a part of their suffering. This is a part of what they’ve done.”

Faced with so many obstacles to receiving care while ill, he said many clients become too exhausted to fight a system “that’s not designed or set up to care for you.”

“If I’m going through pain and I have to go through all these barriers, it may be … easier for me to just give up,” he said.

Before a person leaves a correctional facility, Watterman said, greater collaboration and conversation between the criminal justice system, health care providers and social workers could go a long way to ensure smoother transitions, more stable access to services and improved outcomes.

Bridging gaps in care

Communication between facilities, like corrections and their network of health care providers, even in the same state, may be “absent, fragmented or never been a thing,” said David Cloud, who directs research at Amend, a program at the University of California, San Francisco, that works to reduce the negative health effects of correctional facilities.

Many jails and prisons lack electronic health records, he said, and paper records are often lost or don’t follow a person who is transferred from one institution to another, even if the patient asks for them.

“You could know you have cancer, see a physician and still experience potential barriers to getting those records,” Cloud said.

Improving consistent communication could go a long way in documenting a person’s cancer history and hastening their ability to receive appropriate care during and after incarceration.

Some states are working to bridge those gaps. In January, the Centers for Medicare and Medicaid Services approved California’s Section 1115 waiver to connect justice-involved individuals with certain health conditions to Medicaid services 90 days before they leave a jail, prison or youth detention facility.

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This effort is the first in the nation that would chip away at federal laws that restrict payment of Medicaid benefits for people while incarcerated. While the waiver does not explicitly include people diagnosed with cancer, it does provide access to Medicaid for people with a “chronic condition or significant non-chronic condition” and could better position people for needed services.

“Medicaid waivers are a really important way to experiment” and see if more stable access to health care benefits produces better outcomes for people after incarceration, including cancer patients, Cloud said. He thinks additional states need to broaden these services and that the federal government can further act to “make it not just a good thing to do but an obligation.”

Until then, Watterman and others will continue to work with the hundreds of thousands of people working to restart their lives. They hope for change that eventually makes life a little easier for those who are also cancer patients trying to survive.