Two pandemics meet within the broken U.S. prison health system

Yolanda Camacho turned 56 in January. Like many people across the country, she was unable to celebrate with family and friends. It’s not just the coronavirus that is keeping her from spending the day with her loved ones—Camacho is in prison. If she’s lucky, she might be able to get to one of the housing unit’s three phones and call her son that day. But, with COVID-19 raging through the nation’s prisons, including New York’s state prison system where she is currently incarcerated, Camacho spent the day in her cell hoping to avoid the new virus.

That won’t be easy. Since March 2020 and as of this writing, 5,016 people imprisoned in New York’s prisons have tested positive for COVID-19. Of those, 30 incarcerated people and seven staff members have died. At Bedford Hills Correctional Facility, where Camacho has been since 2006, 82 women have tested positive as of January 29; two have died.

Camacho is also living with HIV and terrified of contracting COVID. “My immune system is already destroyed,” she said.

Across the U.S., the pandemic has exploded behind bars. In state and federal prisons alone, there were 355,780 confirmed COVID cases and at least 2,228 deaths as of January 19. These numbers only encompass state and federal prisons for adults—not local jails, immigrant detention centers, juvenile jails or prisons, halfway houses, or locked-down psychiatric treatment or drug rehabilitation centers. One in five prisoners has had COVID-19 since the pandemic began.

While the Centers for Disease Control and Prevention (CDC) believes that people who are on effective HIV treatment have the same risk for COVID-19 complications as people without HIV, Camacho worries that being in prison increases her risk of contracting the virus. In prison, it is virtually impossible to maintain a six-foot distance from other people at all times. While the prison has issued masks, not everyone wears them—or wears them correctly. Furthermore, guards, medical personnel and other staff members enter and leave the prison on a daily basis; each person is a potential vector for the coronavirus to enter. The same holds true for jails, prisons, and immigrant detention centers across the country.

Camacho is currently on her 14th year of a 20-to-life sentence. This means that she will not be eligible to appear before the parole board for another six years; even then, she is not guaranteed release. In August 2020, Camacho applied for medical parole, which would have allowed the parole board to consider granting her parole earlier because of her medical conditions. She was denied. “They said I didn’t meet their criteria,” she said. “I wasn’t sick enough.”

Medical care, already inadequate, becomes worse

Outside of prison, Camacho, at 56, would not be considered particularly old. But incarceration, complete with inadequate health care, bad food, little opportunity to exercise, and non-stop stress, hastens physiological aging and shortens life expectancy.

At least 10% of people in state prisons are age 55 and older, many of whom have been sentenced to decades, if not life, in prison with few chances of reprieve or early release. Between 1995 and 2010, the number of prisoners age 55 or older nearly quadrupled while the number of all prisoners grew by 42%. It’s estimated that, at this rate, one-third of the nation’s prison population will be over 50 by 2030.

At the same time, the risk for severe illness from COVID is higher for adults age 50 and over. The combination of age and prison thus heightens the risk of COVID complications for those whose bodies have already been worn down by lengthy incarceration.

Positively Aware: Yolanda Camacho

Even before COVID reached the United States—and its prisons—medical care behind bars was, at best, inadequate and, at worst, fatal. For the entire month of November 2020, Camacho was not given her medications, causing a decrease in her T cells and a spike in her viral load. Red welts began spreading across her body.

Camacho repeatedly visited the prison’s medical clinic—no easy feat in prison, where movement requires prior permission. “You cannot just go to the clinic,” she explained. First, she had to fill out a nurse’s screening form. “If you’re lucky, they will call you down the very next day, two days later.” There have been times, she said, that she was never called at all and had to submit another form. “When you finally get called, you then see a nurse, tell her your problem, and she decides the severity of the situation and either puts you down to see the doctor right away or sets up an appointment.”

Camacho was finally reissued her medications on December 8 of last year. She worries that, because of the month-long lapse, she may not be safe taking them due to potential drug resistance. The red welts remain on her body and continue to make her itch. She has still been unable to see a doctor to talk about her concerns.

Alysse Wurcel, MD, is the co-founder of the COVID Prison Project, the infectious diseases liaison for the Massachusetts Sheriffs’ Association, and an assistant professor of community medicine and public health at Tufts University. Prior to the pandemic, her work focused on HIV and hepatitis C in jails. She emphasized that it is the responsibility of jails and prisons to provide medications to people with chronic health needs, including HIV. If Camacho has started her medications again, Dr. Wurcel said, her viral load can once again be suppressed and her T cell count increased. But, she added, the lengthy lack of access can cause psychological distress. This is particularly true for people who were diagnosed over a decade ago and had been told repeatedly that missing their medications could mean a death sentence.

In Idaho, Kerry Thomas has encountered similar problems getting his medications even before the COVID-19 pandemic hit. When he entered the Idaho State Correctional Center in 2009, medical staff initially told him that they didn’t have his HIV medications and were not sure when they would have them available.

Not willing to wait and allow his health to be jeopardized, Thomas called his doctor in Boise, intending to ask if he would send medication until prison medical staff were able to obtain his prescriptions. Instead, his doctor called the prison asking why Thomas was not receiving his meds. Half an hour later, prison officials summoned Thomas and reprimanded him for calling his doctor rather than waiting. But his unintentional advocacy worked: The prison quickly got his pills.

Still, each month he was left to hope that medical staff had reordered his medications before his existing prescription ran out. If his refill did not arrive, he had to put in a sick call request and wait, usually 48 hours. At that appointment, he was given another appointment, typically one week later, with a provider who then ordered his medications, which would take several days to arrive. This meant that Thomas—like many others—could have a lapse in medications of up to two weeks, making his HIV vulnerable to becoming resistant to the drugs.

These days, Thomas’s medications are classified as keep on person (or KOP), allowing him to skip the two-week process and reorder his medications directly by filling out a health services request and then picking up his refill three to four days later.

Because of his age and HIV status, Thomas, also 56, has been classified as medically vulnerable despite evidence that treated HIV alone does not increase risk of COVID-19 complications. Yet, he noted, he has not seen medical staff in the more than six months since that classification. He has submitted written requests asking to be seen by a nurse to discuss his medical status. He even tried following up with a staff member, who identified himself as a COVID nurse, when the nurse made his rounds through the housing unit. Neither garnered him any additional medical attention or answers.

Prisoners form support groups to battle stigma; the pandemic shut them down

For anyone living and aging with HIV behind bars, medical neglect is compounded by widespread stigma and ignorance. In some prisons, fear and ignorance have led to physical attacks against people believed to be living with HIV.

At the same time, incarcerated people have organized to overcome stigma and build support for those living with HIV. In the 1980s, women at Bedford Hills Correctional Facility, the New York prison where Camacho is currently incarcerated, began organizing to combat this stigma. As with everything in prison, it wasn’t easy. First, they had to request permission from the prison’s superintendent to start a peer support group; without such permission, members would be unable to reach out to others in the prison and could even get into trouble for congregating without permission. In 1988, after years of watching women around them die, the prison’s superintendent granted them permission and the AIDS Counseling and Education (ACE) program was born.

“ACE changed the culture in the prison,” co-founder Kathy Boudin recalled. “It changed the culture because it was about people coming together—some were HIV-positive, some were not. But we all were saying, ‘We have to do something about the crisis where there’s a lot of fear. If we don’t do it, no one else will do it.’ ”

Through ACE’s efforts, women learned how HIV could—and could not—be spread. They learned that they would not contract HIV from breathing the same air or from taking care of someone with AIDS. They helped women understand medical terminology and, at times, get needed medical care.

Still, stigma and violence persist. Brittney Austin, who entered Bedford in 2015, has had people post signs disclosing her status on the housing unit bulletin board. Once, she was assaulted. Her assailant wore gloves which, she explained before attacking Austin, were to prevent her from contracting HIV.

“Prison is generally not a place where HIV/AIDS is socially accepted. It’s taboo,” Austin explained. In 2017, Austin saw a flier for ACE and signed up to become a peer educator. “I realized that the only way to defeat stigma is to educate others,” she said. She remembers the first time she facilitated a session on U=U (Undetectable = Untransmittable). Many of the women attending had no idea that a person with an undetectable viral load cannot sexually transmit HIV to another person. “I literally saw a chain of stigma shatter before my eyes.”

While stigma persists, support has also become more available. By the time Camacho arrived in the early 2000s, Bedford had a weekly Friday group where women supported each other through their concerns and fears. They also helped each other understand the effects of various medications and taught one another how to self-advocate. Once, Camacho recalled, a medication she had been prescribed for hepatitis C seemed to be interfering with her HIV drugs. “I was scared that I would get really sick,” she said, “but the women talked me through it and told me the questions to ask [medical staff].” She also was able to have one-on-one sessions with an HIV counselor.

On the other side of the country, the Central California Women’s Facility (CCWF) has had a peer mentoring program since the 1990s, when women began banding together to educate and support one another as they attempted to navigate the prison’s health care system.

By the mid-2000s, the peer health program was run by Centerforce, an Oakland-based reentry non-profit. In 2013, three years after arriving in prison, Shawndra Boode decided to take the 80-hour training required to become a peer health mentor. The training focused on women’s health, including HIV/AIDS, hepatitis, and other sexually transmitted infections (STIs or STDs)—as well as the Prison Rape Elimination Act (PREA), a federal law passed in 2003 aimed at eliminating sexual abuse behind bars. Under PREA, prisons that receive federal funding must adopt a zero-tolerance policy towards sexual assault behind bars.

For Boode, then in her 30s, the decision wasn’t based on her own health concerns. (Boode does not have HIV.) Instead, she said, “I love helping my peers and being able to empower them with facts to make better choices.” Once she completed the trainings, she was able to teach classes on all these topics. She also became part of a cohort who could be called upon to support an incarcerated person when they were told they were positive for a sexually transmitted infection, or to visit the prison’s skilled nursing unit, which houses women whose advanced age and medical needs make them unable to live in the prison’s other housing units.

Not all prisons have similar programs. When Thomas first entered prison, there were no such support groups. At intake, new arrivals were given a flier and, in a group setting, asked if they had any questions. Thomas and others worked to change this and in 2016, the prison administration agreed to a peer mentor program. The program begins with Coffee Time, an orientation session for newly arriving prisoners. There, Thomas shares his personal story of living with HIV—and of being criminalized and incarcerated for HIV non-disclosure. (Idaho is one of 28 states with HIV-specific laws punishing activities like non-disclosure before sex, sex work, exposure to bodily fluids, needle sharing, and donations of blood, organs, or semen.)

“This has provided me the opportunity to mentor men with STDs where transmission risks are discussed … sexual, drug use, tattoos,” Thomas explained. “Being a mentor has given me a sense of purpose. Specifically with the HIV population, an opportunity to share my experiences, give support, and hopefully make a difference.” Since the program began in 2016, Thomas has mentored approximately 60 people one-on-one.

The COVID-19 pandemic put all such programs on pause.

The same is true in California, where the peer mentoring office has been shut down. Even before the pandemic, institutional support for the program had chipped away. When Boode began working as a peer mentor, she was paid 32 cents per hour. Five years later, pay for the peer mentors was slashed to 18 cents per hour. Boode, who relies on the wages from her prison job to buy food and hygiene products, took a prison construction job instead, where she earns $1 an hour, though she continued to volunteer as a peer mentor in her spare time.

Boode is saddened and frustrated that the prison is not allowing mentors to educate their peers about COVID and transmission prevention. “It is always better coming from us, their peers, than from staff, even medical, because there is no trust there,” Boode explained. “We are their peers and in the same boat, so to speak, so our work means more.” As of January 7, CCWF has 601 confirmed COVID cases (or 30% of the 1,994 prisoners); 460 occurred within the previous 14 days.

Still, though the program is technically closed, women who are known peer mentors continue to be approached by those needing support and information.

Shortly before New Year’s, prison medical staff passed out fliers about the COVID-19 vaccine to the 2,011 prisoners. “Normally, we would have passed them out and been able to encourage our peers or give them the pros and cons of the vaccine,” Boode explained. “Most of the time when we do [give out fliers about] the flu shots, we are asked, ‘Well, do you get it?’” When Boode or another peer mentor answers in the affirmative, the incarcerated person is more likely to agree to be vaccinated as well.

Punished for being medically vulnerable

In December 2020, in an attempt to isolate older men at risk for COVID, Idaho prison officials moved Thomas and 255 other men into a newly created unit for those considered high risk for COVID complications: men age 55 and older who have underlying medical conditions. For Thomas, this meant moving from an open dormitory to an eight-by-10 two-person cell. Depending on the day, he’s allowed out of his cell for either five hours or seven hours. During that time, he can take a shower, make phone calls from the shared phones in the common area, order items from the commissary (prison store), or socialize with the men from other cells. Otherwise, he and his roommate are locked together in their cell.

For Thomas, the move has impeded his ability to work, participate in prison programming, and be part of the mentoring program he co-founded. Before the move, he had worked as a clerk in the prison’s education office, earning 40 cents per hour or roughly $80 a month. That amount allowed him to buy his own necessities. More important, it provided him with a sense of value and purpose, even behind bars.

“There are a few areas that I define myself as a man,” he said. “Being courageous, having integrity. Financial independence is on the same line.” Now, he must rely on his son, friends, and advocates at the Sero Project—an organization that fights HIV criminalization laws, where Thomas is on the board of directors—for help with buying soap and other necessities.

Isolating those who are deemed medically vulnerable is a bad idea, said Wurcel. Including people with HIV in that cohort also discloses their status to the rest of the prison population. In addition, she said, “putting the most vulnerable people in one spot goes against the idea that everyone needs to be safe and protected.” In some instances, this may mean those in other units are not treated with the same precautions—such as requiring everyone to wear masks properly. Plus, if a person contracts COVID, all of the most vulnerable people are in the same unit, thus putting them all at risk.

Despite his efforts over the years, the stigma of HIV remains strong and, compounded with fears and ignorance about COVID, has rendered Thomas, who is open about his status, a pariah to many. “Comments are made daily that I must have AIDS or why else would I be on the high-risk unit,” Thomas said. “Therefore, if I sneeze or cough, men scatter, not to mention I eat alone and [am] generally viewed as a walking danger.”

Furthermore, these precautionary measures may have come too late to prevent his exposure to COVID. In November of last year, Thomas began suffering what he at first thought was a sinus infection with nasal drip, a dry cough, headache, and loss of taste. “I didn’t think much about it because I didn’t have a fever,” he recalled. He was seen by medical staff who prescribed TabTussin for his stuffy nose, but did not test him for COVID. His cough lingered another week. Later, he spoke to correctional officers who had contracted and recovered from COVID. They described the same symptoms, making him wonder whether he had had COVID.

Over the summer, Thomas’s current roommate experienced a fever, sore throat, dry cough, chest congestions, body aches, and fatigue. He requested a COVID test, but was not given one. The following week, he was moved to a different housing unit. Neither man was ever tested.

On December 29, 2020, the prison tested every man on Thomas’s housing unit for COVID, placing the entire unit on lockdown pending the results. Thomas was only allowed out of his shared eight-by-10 cell for 20 minutes each day. Thomas was, understandably, frustrated. “I am locked down because of who I am,” he said. He knows that precautions need to be taken to prevent spread, particularly in a congregate environment, but, he questioned, “Where does punitive lockdown come into play?”

That’s what Wurcel says too. “Jails and prisons have isolation policies meant to be punitive,” she noted. These come into play when someone breaks jail or prison rules or is deemed a threat to others. “It’s wrong to restrict some people [simply] because of their age or other conditions.”

In November 2020, Thomas received some good news: His sentence was commuted (or reduced), making him eligible for parole in September 2023 rather than waiting until 2029.

For the next three years, however, he remains behind bars, struggling not to lose hope in an environment that, in the name of protecting him from COVID, has instead further restricted and punished him for his age and status.

Thomas was told that, if he tests positive, someone would tell him. If he did not test positive, he would hear nothing. “That is another unnecessary layer added to an already stressful situation and environment,” he said. “So now I’m sitting around, tripping every time the door opens or I hear keys, wondering if my results have come in.”

Send them home

As COVID ravages the country—including its prisons —advocates, including formerly incarcerated people and those with loved ones in prison, are pushing for decarceration, or mass releases, to stem the spread.

In many states, including California, Indiana, and New York, advocates demanded that people whose age or preexisting medical conditions made them vulnerable to COVID complications be released—either temporarily or permanently. These calls have had varying degrees of success: California reduced its prison population by 22,148 since March 2020, largely by expediting the release of those already slated to leave prison within months. New York allowed 3,145 early releases, decreasing its state prison population by 8.8%.

But these decreases have failed to protect those left behind, who still are unable to socially distance, wash their hands, or take precautionary measures against exposure. In California, nearly 50% of its prison population has had COVID, with 45,486 confirmed cases and 175 deaths as of this writing. In New York, the COVID rate behind bars is 13%, with 4,502 confirmed cases and 30 deaths, nearly double that of the rest of the state (6.8%). Other states—including Idaho, where people must serve 100% of their sentence —did not sizably decrease their prison populations.

Positively Aware: Victoria Law

Victoria Law is a freelance journalist focused on mass incarceration and author of the forthcoming Prisons Make Us Safer and 20 Other Myths About Mass Incarceration.