When people go to jail or prison, their health issues go with them — but treating this unique patient population brings a series of complex challenges.
According to the Bureau of Justice Statistics, it’s estimated that more than 1.2 million people (about the population of New Hampshire) were incarcerated in the United States in 2022. 1
Under federal law, all people in jail or prison have the right to adequate medical care, but high costs, complicated logistics, gaps in care, and communication challenges between on-site physicians and specialists, including hematologists and oncologists, have made it difficult for these patients to get the care they need.
“We can do better,” Michael DeBaun, MD, MPH, a professor of pediatrics and medicine at Vanderbilt University School of Medicine in Nashville, told ASH Clinical News.
Just last year, a case study in Blood looking at three incarcerated patients with plasma cell dyscrasias who underwent bone marrow transplantation found that the care they received while behind bars was lacking.2
“Our research suggests that incarcerated patients face multiple obstacles that delay or hinder treatment, including siloed care, poor record-keeping, lack of follow-up, and difficulty obtaining appropriate medications,” the authors concluded.
To understand the unique challenges of caring for this patient population, ASH Clinical News spoke with several experts to learn more about how care is provided in incarcerated settings, the biggest obstacles to caring for these patients, and ways that hematologists and oncologists can help improve care.
The Right to Health Care Versus the Reality of Receiving Care
As established by the 1976 Supreme Court ruling in Estelle v. Gamble, all incarcerated individuals are entitled to adequate health care, with the court concluding that failing to provide such care would be “cruel and unusual punishment.”3
However, as Crystal S. Yang, JD, PhD, a Bennett Boskey Professor of Law at Harvard Law School, pointed out, adequate care can be difficult to achieve.
“These rights are difficult to enforce by potential litigants, and there are very few oversight mechanisms in our nation’s correctional facilities,” she said.
In states like Nebraska, there is also state-level legislation to guide the care individuals in prison or jail receive.
“They have a state statute that says the care has to be equivalent to the care these patients can get in the community, but I’ve worked in three other states, and I can tell you that even though it’s not legislated, that’s the thought,” said Jerry Lee Lovelace, MD, PhD, the medical director for the Nebraska Department of Correctional Services.
The United Nations’ (UN) Nelson Mandela Rules also state that prisoners “should enjoy the same standards of health care that are available in the community and should have access to necessary health care services free of charge without discrimination on the grounds of their legal status.”4
Under this international standard set by the UN, prisoners should receive a level of preventive care, checkups, and treatment equivalent to that of those living in the community.
“Now, one valid question in the U.S. is whether that standard is sufficient, even if it were enforced, since many Americans are uninsured, underinsured, or unsure of their coverage,” said Marcella Alsan, MD, MPH, PhD, a physician economist and Angelopoulos Professor of Public Policy at Harvard University. “Yet even that admittedly imperfect standard is not met in most of our research.”
According to Dr. Alsan, that’s because sheriffs aren’t trained as medical providers and often the funds are “simply inefficient.”
“Without resources and regulatory oversight, it’s very hard to know what, if any, preventive services incarcerated individuals are receiving,” added Nadia Huffman, a project coordinator with the Harvard Kennedy School’s Health Inequity Lab.
Providing Basic Treatment On-Site
Most prisons have on-site facilities where incarcerated individuals can receive primary care and basic outpatient services. These on-site clinics are typically run by the state’s department of corrections, contracted private companies, state university public medical schools, or a hybrid of these options, according to a 2018 Pew assessment of care within state prisons.5
These on-site facilities may also include specialized units or clinics that can provide other types of care like dialysis or beds where patients can recuperate after a hospital stay.
According to Dr. Lovelace, if a person requires daily medication, it can either be distributed in a packet similar to a pill bottle, which the patients can take to their cells, or for certain “watch take” medications like narcotics or some mental health medications, they are required to go to a pill window where they are given the medication and watched as they take it.
On the federal level, the Federal Bureau of Prisons (FBOP) said in a statement to ASH Clinical News that all patients are provided with essential medical, dental, and mental health services and are treated independently on a case-by-case basis.
“The FBOP uses licensed and credentialed health care providers in its ambulatory care units, which community consultants and specialists support,” they noted. “All incarcerated individuals have daily access to medical care and appointments, and medical employees conduct daily rounds throughout each facility.”
Arranging a Patient’s Specialized Care
Just like in the community, people who are incarcerated may have medical needs that extend beyond the on-site clinic’s capabilities, and a specialist is needed.
Prisoners in Nebraska are typically transported to the specialist’s office by two guards for medical appointments, Dr. Lovelace said. The Department of Corrections then pays the provider for services rendered.
Pew concluded in its 2018 analysis that off-site care often constitutes a “significant part” of correctional health budgets. For example, in 2015, Virginia spent 27% of its health care budget on off-site hospital care.
The handling of emergent and non-emergent hospital stays varies by state. Non-emergency care requires approval from the corrections department to curb costs and make sure the most efficient care strategies are in place. In some instances, these decisions are made by the medical director employed either by a contracted third party or the state corrections agency, while in other instances a panel weighs in on each request.
In many cases, when people who are incarcerated are hospitalized, two guards accompany them throughout their stay. Some states, though, have gotten creative when it comes to ensuring the community’s safety while also providing incarcerated patients the care they need.
Pew reported that nine states have chosen to have a hospital wing “hardened” or converted in one or more hospitals to a secure incarcerated-only unit, where safety precautions are put in place and rooms are modified — for example, bolting down the television or having a room without windows. This allows the department of corrections to save money on staffing. Other states, like North Carolina, Texas, and Georgia, have built their own prison hospitals to serve the needs of individuals who are incarcerated.
Uma Borate, MD, MBBS, a clinical associate professor in the section of acute leukemia and the Division of Hematology at The Ohio State University in Columbus, told ASH Clinical News she is tasked with providing care to incarcerated people with leukemia.
“Once the incarcerated patient or the inmate gets sick, we typically are sent a request to evaluate this patient to figure out what’s going on, and that typically happens at the hospital,” she said. “They come in, and much like for any other patient with leukemia, they get a bone marrow biopsy, and they get diagnosed with leukemia.”
Dr. Borate never goes into a prison setting herself but does coordinate care with doctors at the on-site prison medical facilities.
“Certain treatments that are able to be administered in those medical facilities actually do get administered there, including transfusions, antibiotics, and certain low-risk chemotherapy treatments,” she said.
Using telehealth systems, Dr. Borate is then able to follow patients at their medical facility.
“I get sent their vitals; they have typically done blood work there, so I can review their blood work; and then we have a conversation via telehealth,” she said. “I ask them their symptoms, I ask them if they have any concerns, and then depending on what the plan is at the end of the visit, we coordinate with the facility and medical team to say, ‘Well, this patient needs to start the next round of chemo’ or ‘I need to do blood work every two or three months.’”
If there is a medical concern or the patient needs treatment that extends beyond the capabilities of the on-site prison facility, Dr. Borate said the patient is transferred to the hospital.
Considering Who Pays for Treating Incarcerated Patients
Because prisons and jails are federally obligated to provide medical care, the question becomes who pays for that care? A provision of the 1965 Medicare and Medicaid Act known as the Medicaid Inmate Exclusion Policy (MIEP), according to the Harvard experts, prohibits carceral institutions from billing Medicaid for services rendered behind bars, which means the burden typically falls to the state-level department of corrections or the FBOP.
The U.S. Government Accountability Office (GAO) found that in the fiscal year 2016, the total health care obligation for those housed in federal prisons was $1.34 billion, a staggering 37% increase from 2009, largely due to a growing aging prison population that has more complex health care needs.6
Some of the costs of care fall to the incarcerated patients themselves. In 2022, 40 states and the federal prison system had patient copays.7 Although these copay costs average around $2, this relatively low amount can place a financial burden on incarcerated individuals, who typically make between 13 and 52 cents an hour and can be taxed up to 80% of their income for things like lodging, court costs, or building new prison facilities.8
“People struggle with not affording the copay,” Cynthia Alvarado, who spent 12 years in a Pennsylvania prison, told Prism, a nonprofit news organization, in 2022. “That creates mental health issues because now you’re depressed, now you’re sad, now you have more problems over not being able to afford something that should just be free while you’re in the custody of their care.”8
Navigating Numerous Challenges to Treating Patients in Custody
The growing financial burden to incarcerated people and federal and state authorities isn’t the only challenge that can hinder the quality of care.
Dr. Lovelace said carceral facilities often have difficulties staffing the on-site medical facilities.
“In a lot of the states, the prisons are always in rural places, and it’s hard to attract physicians and psychiatrists to those rural places,” he said. “It’s hard to get them there in the community; it’s even harder to get them there in the prison.”
These staffing shortages — and the day-to-day obligations already facing the taxed on-site medical facilities — can make it difficult for specialists or outside providers to communicate with the prison or jail staff as much as they might like.
Dr. DeBaun, a pediatric hematologist and oncologist who works with patients with sickle cell disease (SCD) who are incarcerated, said oftentimes communication takes place with a nurse or health care administrator at the on-site prison medical facility instead of directly with a peer physician about the patient’s needs.
There are also significant differences in the way treatment plans are approached.
According to Dr. Borate, for instance, when a patient in a traditional setting is diagnosed with leukemia, the specialist often has a conversation with the family or support system about the treatment options, long-term outcomes, toxicity, and supportive care the patient will need, but that can’t happen when the patient is incarcerated.
“You’re essentially saying, ‘You have this disease; this is the best treatment that I think will be recommended for you, and you do the treatment,’” she said. “So there isn’t that typical discussion with the patients and their support system as you normally expect.”
In addition, it’s difficult for a patient who is incarcerated to do some of the supportive care aspects of treatment that are usually recommended for patients enduring long hospital stays or managing a life-threatening disease, like regularly getting out of bed and walking the halls to get exercise or eating a healthy diet.
Another challenge is ensuring that adults and children with chronic conditions who are held in custody are treated by those with enough knowledge about a specific condition to recognize the need for acute medical care.
In one heartbreaking case at a U.S. immigration detention center in Texas, an 8-year-old girl with SCD died in custody on May 17, 2023, after contracting the flu. The day she died, Anadith Reyes was seen three times by the border patrol’s medical unit, and her mother begged the staff to hospitalize her daughter, but by the time she was taken to the hospital, it was too late.9
“If this girl had gotten the care she needed, if people had been paying attention to the fact that she had SCD and were escalating her care more quickly, she would most likely be alive right now,” said Elizabeth Barnert, MD, MPH, MS, an associate professor in pediatrics at the University of California, Los Angeles David Geffen School of Medicine.
After Reyes’ death, Dr. DeBaun and colleagues did a review of six chronic diseases in children and adolescents, including SCD, to identify gaps in care for those youth in custody.10
“Youth in custody face numerous challenges in accessing health care services, such as limited resources, fragmented health care systems, and insufficient coordination between prison health care teams and external health care providers,” the review noted. “Moreover, custodial facilities may lack the necessary infrastructure and specialized health care personnel to manage the time-sensitive acute medical needs of youth with chronic diseases.”
These gaps in care were also observed in the Blood case study of three incarcerated patients with plasma cell dyscrasias who underwent bone marrow transplants. The review’s authors noted that all three patients had been transferred between correctional facilities and outside hospitals, resulting in fragmented care and incomplete records.
“Additionally, patients went months or even years without follow-up monitoring after initial treatment and would often re-enter the health care system only upon presenting with severe symptoms from relapsed disease,” they wrote.
Working to Improve Care for Incarcerated Patients
Dr. DeBaun believes that one way care can be improved for patients being held in custody is by working with specialists to create standards or guidelines to direct the care of those with chronic or life-threatening conditions who are incarcerated.
He’s currently working with the American Society of Hematology to create a panel where hematologists, mental health professionals, and those working in carceral settings can work together to develop a set of guidelines or standards designed specifically to address the unique needs of this patient population in a way that takes into consideration the correctional systems’ restrictions and capabilities.
“The goal is to do better for this patient population and apply our expertise,” he said.
He’s hopeful specialists can provide insight to create strategies to improve the intake process for those in custody, manage and administer their care during their stay, and develop separate strategies to make a more seamless re-entry into society.
Dr. Barnert, who plans to attend the panel with Dr. DeBaun, said improving medical education, fortifying training, and providing on-site medical providers with clinical guidelines to help guide the care for complex patients with life-threatening or debilitating conditions could be “groundbreaking.”
“I think what hematologists can do is ... contribute to the development of clinical guidelines that include specific considerations for people in custody because you … are the hematology experts, and a lot of the management that will happen, the day-to-day management, won’t involve the specialists,” Dr. Barnert said.
“So if the specialists can provide that level of insight to the correctional health providers, that is extremely helpful.”
Many experts agree that another strategy to improving continuity of care is using telemedicine in more depth and frequency to improve patient access to specialists and mental health providers and potentially even reduce health care costs for this patient population.
According to Dr. Lovelace, having specialists in the community who understand the prison systems’ unique needs and are willing to offer their help would benefit the entire system.
“Some specialists are very user friendly and are just always happy to get on the phone with you and talk you through something, and some specialists aren’t,” he said.
Although this patient population has some distinct needs, Dr. Borate encourages her colleagues to focus on the many ways in which they are just like any other patient.
“It’s really important to continue to see the human face of the person in front of you, not the chains and the guards,” she said. “I feel very strongly that those inmates and patients are very much interested in being alive and doing the best they can to be a good partner in the fight against their cancer. They are very invested in their treatments, they ask a lot of good questions, and within the limitations of their system, they really try to do as best as they can.”
References:
- Carson EA, Kluckow R. Prisoners in 2022 — Statistical Tables. Bureau of Justice Statistics. November 2023. Accessed April 22, 2024. https://bjs.ojp.gov/library/publications/prisoners-2022-statistical-tables#:~:text=Findings%20are%20based%20on%20BJS’s,to%20yearend%202022%20(87%2C800).
- Mahayni Y, Ahmed T, Seiter K, et al. Management of bone marrow transplants in incarcerated patients with plasma cell dyscrasias: a case series. Blood. 2023;142(Suppl. 1):7350.
- Estelle v. Gamble, 429 U.S. 97 (1976). November 30, 1976. Accessed April 22, 2024. https://supreme.justia.com/cases/federal/us/429/97/.
- Gilmour A. The Nelson Mandela Rules: protecting the rights of persons deprived of liberty. United Nations. 2015. Accessed April 21, 2024. https://www.un.org/en/un-chronicle/nelson-mandela-rules-protecting-rights-persons-deprived-liberty.
- State prisons and the delivery of hospital care. July 19, 2018. Accessed April 21, 2024. https://www.pewtrusts.org/en/research-and-analysis/reports/2018/07/19/state-prisons-and-the-delivery-of-hospital-care.
- U.S. Government Accountability Office. Bureau of Prisons: better planning and evaluation needed to understand and control rising inmate health care costs. July 31, 2017. Accessed April 22, 2024. https://www.gao.gov/products/gao-17-379#:~:text=From%20fiscal%20years%202009%20through,increase%20of%20about%2037%20percent.
- Herring T. COVID looks like it might stay. That means prison medical copays must go. Prison Policy Initiative. February 1, 2022. Accessed April 21, 2024. https://www.prisonpolicy.org/blog/2022/02/01/pandemic_copays/.
- Avila CJ. Prison health care is only available if you can afford it. Prism. October 31, 2022. Accessed April 20, 2024. https://prismreports.org/2022/10/31/prison-health-care-hidden-costs/.
- The Associated Press. 8-year-old sought help 3 times on the day she died, immigration officials say. May 21, 2023. Accessed April 21, 2024. https://www.nbcnews.com/news/latino/8-year-old-girl-sought-medical-help-3-day-died-immigration-officials-s-rcna85499.
- Dickens C, Ramesh A, Adanlawo T, et al. Time-sensitive healthcare guidelines for youth with chronic diseases in custody: gaps in care. Pediatr Res. 2023.