I interviewed five people with Long COVID in prison. They are invisible in the system.

While there are no data sources on Long COVID in prison, experts suspect rates of the disease may be higher there than in the general population. They face high reinfection risks and poor access to medical care.

A graphic shows two images side by side. One shows mobility devices, including many walkers, outside of prison cells. The other shows a red SARS-CoV-2 virus contrasted with a black background. — The Sick Times / Sources: Oregon Department of Corrections, Przemyslawiciak

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Key points you should know:

Prisons in the U.S. experienced extraordinarily high SARS-CoV-2 infection rates in the early years of the pandemic. As a result, rates of Long COVID among the prison population may be even higher than those in the general population.
No systematic source of data exists on Long COVID rates in prisons, and there is very little information about how the disease affects this population.
Healthcare in prison is characterized by cost-cutting and neglect. As a result, some people give up on seeking medical care.
Many people in prison may have no idea what Long COVID is or if it explains their symptoms due to lack of information and lack of dedicated and informed medical care.
Advocates can include people in prison in their efforts at patient education and can consider how blanket policy adoptions will impact or benefit this population.

Since he had a stroke during his case of COVID-19 in November 2020, 72-year-old Richard Grape sleeps for 12 to 18 hours a day and uses a wheelchair. Grape says he lacks the energy to do much of anything at all, even play games on the PlayStation he bought for himself. Like a lot of people with Long COVID, he doesn’t have a formal diagnosis.

Grape has spent the last 31 years imprisoned by the Colorado Department of Corrections (DOC). An army veteran who treasures his travel memories, Grape told The Sick Times what it’s like to be in prison with Long COVID. “I think it’s actually getting worse, to be honest with you,” he said. “I do not have a lot of drive or motivation to do hardly anything.” Nonetheless, Grape still needs to get up any time guards want to do a shakedown (a surprise search) of his cell or count heads.

Prison is a notoriously bad place for anyone with chronic illness because of the difficult living conditions and inadequate medical care. There are no reliable data on how many people in prison across the country have Long COVID, or, critically, what kind of care they are receiving.

John Richard Green, who is imprisoned in Texas, wrote that, with Long COVID, his health is “more messed up than the floor of a New York cab.” He has chronic diarrhea, cataracts in both eyes, incontinence, fatigue, and nerve pain. Green is a fan of the band Emerson, Lake & Palmer, and like Grape, is an aging man who has been in prison for decades.

“Now I am bedbound, sick, and all alone,” he wrote. “And waiting for parole to a nursing facility because I have nowhere to parole to.” Green recently lost his aunt, who managed his finances. Like many people entering their “golden years” in prison, Green has little surviving support on the outside. Yet, he wrote, “I’m hanging on, because I promised my aunt I wouldn’t give up.”

For this story, The Sick Times spoke with experts in prison health data and lawyers handling prison-related litigation, and circulated a call among prison newsletters. After several months, we interviewed five people in prison in four states who have Long COVID symptoms but found no sources of systematic data.

Speaking with sources in prison is challenging. All forms of external communication are difficult from inside the prison. Calls are limited to 30 minutes or less, depending on the state, and in Colorado and Oregon, an opaque process of approval took several weeks before these calls were permitted. Additionally, e-messages require the purchase of “stamps,” which is a hardship for those without financial support from the outside.

Once in contact, sources reported no interest from medical staff in Long COVID and varying levels of accommodations for their symptoms. Grape and Green are each living in quasi-retirement within the prison, but others are simply struggling through daily life as best as they can. Wayland Scott, who is living with Long COVID in an Oregon prison, said that it’s hard enough to find a decent job and requesting any work accommodations or restrictions would be of no benefit. “You’d screw yourself.”

All those who spoke to The Sick Times lacked Long COVID–informed medical care, but more than that, they lacked access to basic information about the disease.

Hot spots

In 2020 and 2021, prisons had extraordinary rates of SARS-CoV-2 infection. In her book Corridors of Contagion, Victoria Law highlights that by mid-June 2020, all five of the largest known infection clusters were in prisons or jails. During the first year of the pandemic, the rates of SARS-CoV-2 infections as well as mortality were several times higher in the prison system than in the general population, with an especially severe difference in the first few months.

That trauma had a lasting effect. At the first mention of COVID-19, many people in prison will respond immediately with strongly worded criticisms about the institutional failures they experienced. Some sources for this story believe prisons infected people on purpose.

“The measure of security aimed at protecting prisoners was less than none,” Stanley Williams, who has been in prison for 28 years, wrote in a letter to The Sick Times. Williams went on to describe seeing other people in the prison die from COVID-19 and coming close to death with his own case of COVID-19.

Scott said, “All we could do was sit in the stupid cell down there in the hole, our lights on all day long … I mean, they treated us as if we were just … I don’t know how to put it, they treated us horribly.”

Scott is part of a class action lawsuit alleging the Oregon DOC failed to protect people in its custody from COVID. Scott, who was working as a live-in caregiver to another person in the prison, contracted COVID-19 from his charge, who died from the infection.

All we could do was sit in the stupid cell down there in the hole, our lights on all day long … I mean, they treated us as if we were just … I don’t know how to put it, they treated us horribly.
Wayland Scott, A person with Long COVID in an Oregon prison

Even Grape, who defended the Colorado DOC’s failure to provide him with a mobility device until after he had taken a disastrous fall, was unforgiving in his assessment of the department’s COVID-19 response. “They made big mistakes,” he said. He went on to say that he suspected the facility tried to get people sick in an attempt to pursue “herd immunity.”

The terror and trauma of those peak COVID-19 years is documented in Corridors of Contagion as well as in the University of California, Irvine, audio archive Prison Pandemic. People in prison share stories about punitive measures like being held in solitary, losing visits and phone calls with family, terrifying brushes with death, and a stunning lack of information and personal protective equipment.

While this research focuses on the early pandemic, COVID-19 and Long COVID still impact prisons today. Previous outbreaks have shown that the regular, ongoing waves in SARS-CoV-2 infections do not stop at the prison doors.

Continued circulation of COVID-19 means continued risk for reinfection, which can significantly impact health, including setting back the baseline of those who already have Long COVID. There is little that people in prison can do to protect themselves; some can access surgical masks, but higher-quality masks that do more to prevent airborne contagion remain unavailable. Other layers of protection, like isolating from those who may be sick, are completely out of a person’s control in a prison setting.

While no systematic data are available, experts expect the Long COVID rate in prisons is high. In a 2024 preprint shared in medRxiv, a team of researchers estimated that 9,100 to 11,000 people in California alone developed Long COVID as a result of prison transmission, using data that went only through early 2022. The disease’s burden “is disproportionately on Black and Indigenous people in comparison to the state as a whole,” they wrote.

At least one death in prison from Long COVID has been documented. Eugene Varner Jr. was a 43-year-old man who died in an Illinois prison in March 2021. His family won damages from the state after demonstrating that he died from lack of treatment for a blood clot he developed a few months after having COVID-19. Long COVID deaths are significantly undercounted, and there are likely other unaccounted for deaths from the disease in prison.

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Long COVID is invisible in the prison system

Even if prisons were collecting Long COVID data, there would likely still not be many official cases, surmises Sharon Dolovich, director of the UCLA Law Behind Bars Data Project, which tracks deaths in carceral facilities across the U.S. That’s because a Long COVID diagnosis often requires the cooperation of medical providers who are invested enough to seek causes for symptoms and rule out other possibilities. “You don’t get that when you’re in prison,” she said.

Grape characterizes the medical care he receives as adequate, but even so, he reported that he did not seek a specialist visit for his suspected Long COVID. “It’s like, what are they going to do?” he asked, indicating that diagnosis is unlikely to offer treatment and can only confirm what he already knows.

All five people in prison who spoke to The Sick Times suspected they had Long COVID, but, like Grape, few of them pursued care for it. There are some guidelines for treating the disease written by specialized providers, including off-label treatment guides, that may help improve quality of life for some people with the disease — but a person must be able to work with a provider to access those treatments. That can be challenging for people with Long COVID even outside of prison.

The profit-driven model of healthcare in prison is largely to blame, said Sarah Grady, a lawyer who specializes in representing the civil rights claims of people in prison. The way the model generally works, she explained, is that for-profit corporations receive a set payment per individual in the prison, so that any care they provide reduces their profits. Stories abound of people being given aspirin and nothing else for medical ailments ranging from toothaches to torn muscles, or not having severe concerns checked out until it was too late. She characterized the current model as “rapacious capitalism,” where these for-profit healthcare providers are bought out by private equity firms who increase profits in the short term by providing “constitutionally inadequate” care.

Even states without for-profit providers involved, like California, operate on this cost-reduction model, Dolovich said. “It’s not as if private providers have the lock on under-providing care with an eye to the bottom line.”

Grape characterizes the medical care he receives as adequate, but even so, he reported that he did not seek a specialist visit for his suspected Long COVID. “It’s like, what are they going to do?” he asked.

People in prison learn this through hard experience and act accordingly, showing little trust in the medical system.

Qaurra Rose, who lives in an Oregon prison, said that although she can get so congested she cannot breathe properly since contracting COVID-19, she doesn’t trust the prison medical enough to seek relief. “Quite frankly the only reason I don’t say anything to medical staff here is cause I don’t trust them to do anything about it,” she wrote in an e-message.

Meanwhile, her cellmate, Wayland Scott, says he has frequently had problems breathing after COVID-19, and gets winded going up the stairs he must take to get to his cell. Even so, he has not been able to receive an inhaler, despite having one before Long COVID when he first came to prison. “There was a year that they had a big shortage of the albuterol. And when that happened, I got taken off of my inhaler and I’ve never been able to get it back,” he said.

Prisons are “magnifying lenses for all our social problems, and healthcare is one of those,” said Keramet Reiter, a co-founder of the Prison Pandemic archive. Although prisons may seem like a sealed-off place where problems of all kinds can be contained, “they’re actually incredibly porous,” Reiter said. “They are not places that provide care in any sense.”

People in prison are part of the Long COVID community

Outside of prison there is an active community of people with Long COVID advocating for themselves. They are pushing at the local and federal levels for more recognition for the disease, research into biomarkers, and treatment trials. They demand institutions to fund and prioritize research into a condition that is affecting an estimated over 400 million people worldwide.

Similarly, prison health researchers and advocates need and want quality data on the prevalence of Long COVID. Those who spoke to The Sick Times all highlighted the importance of transparency in the “black box” of prison for improving the often deplorable conditions.

Dolovich emphasized the role that sharing information with those in prison can play in helping people assess their own health within the information vacuum of prison. Individual advocacy, too, can be “really meaningful to achieve better outcomes than would happen without that advocacy,” said Grady.

In Oregon, Scott said, “If we don’t sit here and push and push and push and push, they don’t do nothing for us.” Scott felt he was not getting his inhaler and other necessary treatment because he does not have any outside advocates who felt comfortable confronting the authority of the DOC by demanding better treatment for him.

Advocacy is useful on a “macro level,” too, Grady said. For instance, lawyers and advocates were able to use Centers for Disease Control and Prevention (CDC) and Illinois state policies around reducing COVID transmission to improve conditions for people in prisons and jails. Advocacy “around a particular condition … can be really meaningful in helping to at least ensure that there are systems in place to address these chronic conditions,” she said.

The policies Long COVID activists fight for on the outside will be the same levers available for those inside the prison to find some relief.

People often underestimate the impact of just listening to people in prison, Reiter said, since people inside “often have their day-to-day realities denied, particularly around illness.” Ultimately, the answer, she added, is to “just get people out.”

People inside “often have their day-to-day realities denied, particularly around illness.” Ultimately, the answer, she added, is to “just get people out.”
Keramet Reiter, co-founder of the Prison Pandemic archive

October Krausch, PhD, is a freelance sociologist, activist, and writer in the Detroit metro area. Their writing has been published in Truthout, In These Times, Inside Higher Ed, and The Progressive, and they are the editor of the forthcoming book The Struggle Is Always Worth It.

Readers interested in connecting with and/or supporting the people with Long COVID interviewed for this story can contact October at rebelprof@proton.me or @freeze.16 on Signal.

All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.