Locked Up & Lost: HIV Behind Bars

When Jones was released from an Ohio State penitentiary in 2008 he recalls that a social worker attempted to link him with care, providing him with directions to HIV service providers and giving him a bottle of antiretroviral medication to bridge the gap.  

The college-educated, world traveler — who’d been HIV-positive, and in care, for decades — probably seemed like a perfect candidate for the reentry program. But, like thousands of other HIV-positive former inmates, Jones never showed up at the addresses he’d been given. 

“I’m not going there,” he decided. 

Worse, he discarded the pills he’d been given.

“They handed me two weeks’ worth of medication,” he remembers. “And most people probably did just like me — I left them at the bus station. I was like, ‘Well I’ve got two weeks’ worth, but what the hell am I to do after that?’” 

His behavior may seem shocking, but it reflects a startling reality: 90 percent of HIV-positive prisoners experience interruptions in their treatment upon their release from prison. Treatment interruptions can have long-term, negative impacts on the health of those living with HIV. The longer the interruption, the more time the virus remains unfettered, the more damage it can inflict and the greater reservoirs it can establish.More than 60 percent of former inmates report experiencing treatment interruptions lasting two months or more.

Jones, who was also featured in Plus magazine’s special investigation on depression, is an activist, peer educator, and performer with the unique ability to bring people to tears — from laughing so hard — even when talking about seriously depressing shit.

He grew up in poverty in “the heart of the ghetto,” where he was a victim of child sexual abuse. After growing up and coming out gay, Jones moved to Atlanta where he was later diagnosed with AIDS. That was in 1984, and Jones was told he had six months to live. Outliving that prediction — “for whatever reason, I’m still trying to figure it out” — Jones has had the un-enviable luck of watching others fade away. “Everyone else just died,” he reflects now. “Most of my friends…60, 70 people in the span of a few years.”

Nearly 20 years after his HIV diagnosis, Jones was back in Ohio and still struggling when, he admits, “my depression led me to prison.” Jones may have depression to blame, but far too often what leads those with HIV to prison seems to be the color of their skin.

The mass incarceration of African-Americans has become commonplace in the United States, both a result of and contributor to enormous racial and economic disparities in employment, education, healthcare, poverty, and even mortality. For guys like Jones, this stacked deck begins early and casts a long shadow.

“Inadequate prenatal care, childhood exposure to lead and other toxins in the home, poverty, and other early childhood trauma all predispose underserved children to poor performance in school,” argues Georges Benjamin, the executive director of the American Public Health Association. “Minor behavior patterns — especially among kids of color — can result in school suspensions as early as preschool. This practice starts the school-to-prison pipeline.”

More than 2 million people in the United States are incarcerated in federal, state, and local correctional facilities on any given day. Despite representing only 13.5 percent of the U.S. population, blacks accounted for almost 40 percent of the total prison and jail population in 2011. African-Americans are incarcerated at five times the rate of whites. The probability that a young black man will go to prison is tripled if he doesn’t finish high school.

The decades-long war on drugs — which Benjamin calls “a war on people” — and mandatory sentencing laws, have filled prisons to capacity. They also disproportionately criminalize people of color, Benjamin explains, by enforcing laws that penalize African-Americans more harshly. For example, he says the punishment for possession of crack cocaine was “100 times stricter than for powder cocaine, the latter of which was favored by whites.”

Black gay and bisexual men are also disproportionality impacted by mass incarceration, according to a 2014 report. The study’s author, Russel Brewer, director of the Louisiana Public Health Institute’s HIV/STI program, tells Plus, “I think what was surprising was that there was such a high prevalence of incarceration history among the black, gay [and] bisexual men in this study. About 60 percent of the men — I think it was over 15,000 men enrolled in the study — had a history of incarceration.”

Pulling disproportionately from disadvantaged communities with higher risks for HIV, correctional facilities have long reported much higher rates of HIV than external communities. In 2010, the rate of diagnosed HIV infection among inmates in state and federal prisons was more than five times greater than the rate among the general public.

But in the last two decades, institutions have also benefitted from outside HIV prevention efforts and wider access to antiretroviral medications. The number of AIDS-related deaths in prisons overall plummeted 77 percent between 2001-2010. In the same period, the estimated number of inmates with HIV also declined, although by a much smaller amount, just 16 percent.

Still, people living with HIV appear to be at an increased risk of being incarcerated, andstudies show 20 to 26 percent — that’s nearly one in four — of all Americans living with HIV are incarcerated at some point each year. 

Though HIV rates among black women are down overall, African-American women remain particularly vulnerable to being HIV-positive and imprisoned. In fact, prisons are the only setting in the U.S. where HIV prevalence is higher among women than men, with approximately 2.6 percent of female and 1.8 percent of male state prison inmates known to be HIV-positive. Further, African-Americans make up two-thirds of all newly reported HIV cases among women and 34 percent of female inmates.

Despite widespread concern that mass incarceration of African-American men has fueled the HIV epidemic in the black community, most experts, including those at the Centers for Disease Control and Prevention (CDC), insist that the majority of those locked up with HIV were positive prior to their incarceration.

It’s also a misconception that gay and bisexual men spread HIV in prison through sexual contact; several studies have shown that men who had anal sex with other men were far less likely to report this activity while they were locked up than prior to and after their incarceration.

“The research is really saying that folks are already living with HIV before they enter prison, or jail,” Brewer confirms. “And they just don’t necessarily know their status.”

One of the biggest barriers to that knowledge is the fact that there are no universal protocols on testing inmates for HIV. While some facilities mandate HIV testing for all incoming inmates, most rely on various voluntary options. Some facilities offer testing during an inmate’s intake while others only test inmates upon release. Very few prisons test both incoming and exiting prisoners for HIV.

Brewer, whose home state of Louisiana “has the highest incarceration rate in the U.S.,” says his agency is trying to expand HIV testing in the state’s correctional facilities, “so that upon entry, folks know their status so that they can get the care that they need while they’re there.” Unfortunately, most people incarcerated in the United States actually serve their time in jail cells rather than prisons. Jails are short-term facilities typically run by the county, while state and federal prisons are where time is served after sentencing. Some jail systems are enormous and dwarf many prisons. For example, Los Angeles has the largest jail system in the country, with approximately 18,000 inmates at any given time.

The transient nature of the jail population makes HIV testing even more difficult. In fact, nine out of 10 jail inmates are released in under 72 hours, generally not long enough for a lab to process the test and notify the individual before they are released—let alone for providers to link the HIV-positive to care.

A 2010 study of New York City jails found that 28 percent of inmates with HIV hadn’t been diagnosed at the time of their admission. Furthermore, researchers concluded, “Despite a four-fold increase in jail testing, most undiagnosed infections still are not identified through routine, voluntary jail testing, largely because of the low acceptance of HIV testing.”

There is also no denying that HIV can spread behind bars. Despite legal prohibitions, inmates continue to have sex and inject drugs. Prison tats had long been thought to spread HIV between inmates but several studies ruled tattooing out as an HIV vector.One CDC examination of seroconverters in Georgia state prisons created genetic fingerprints for the prison’s various HIV strains, and then followed them back to determine how each inmate was exposed. Those who initially insisted their only risk-factor was tattooing, later admitted to having sex with other prisoners prior to testing positive.

Efforts at preventing the spread of HIV inside prisons face more hurdles than those outside and the services provided aren’t consistent throughout the correctional system. Some, but hardly all, institutions offer educational materials, instructor-led trainings, peer-to-peer  programs, and prevention case management. Although other countries have successfully integrated harm reduction options for inmates who use injection drugs, no American facility has yet to authorize a needle exchange program.

The World Health Organization and CDC both recommend the distribution of condoms in prisons, but in 2014, California became only the second state — after Vermont — to do so.

“That condoms work is not a mystery,” Los Angeles jail epidemiologist Garrett Cox told Al Jazeera after the law passed in California. Unfortunately, even inmates who are aware of their HIV status and/or want to practice safer sex rarely have access to condoms. Instead they employ creative solutions like using plastic wrap, latex gloves, or plastic grocery bags secured with rubber bands. 

Other inmates may not understand risks associated with sex or drug use. Or they just may not care. The Georgia prison study found that of those who seroconverted in prison, 44 percent had been previously incarcerated, 86 percent had committed a violent offense, and 34 percent were serving life sentences. While some of these men may not have understood their risks, others may have felt they had nothing to lose or that the risk of HIV was worth the high or sexual contact. 

Jones, the one-time Ohio prisoner, recalls that for those facing long prison sentences, “people just did what they did.” Even knowing someone had HIV wouldn’t necessarily stop someone else from having sex (or sharing a needle) with them. (Interestingly, that Georgia study did confirm that — as in the general population — those who find out they are HIV-positive while in prison do alter their risk taking behavior afterwards and thereby decrease their likelihood of transmitting HIV to others.)

As prison populations swell, correctional facilities increasingly find themselves serving as primary health care providers. Considering that those serving time often hail from disadvantaged communities with limited resources, the healthcare correctional institutions provide may be the first such care an inmate has ever received. 

“Unfortunately the economic downturn and resulting healthcare cuts have dramatically impacted the jail, making it the provider of first resort for any number of health problems, HIV included,” the Cook County, Illinois, sheriff’s office said in a statement to Chicago’s Windy City Times. “We are working to better identify those with medical and behavioral healthcare needs, including HIV, and developing better transitions to care in the community with the hope that people will continue to access that care rather than cycling through the jail for care.”

Medical care of prisoners may be constitutionally required but there are no guarantees about the quality and inclusivity of that care. Many prison systems outsource their medical care to other providers and not all of them are equal. In fact, several have been sued for allegedly denying HIV care.

While researching her report, HIV Treatment in U.S. Jails and Prisons, Mary Sylla, founder and director of Policy & Advocacy for the Center for Health Justice, discovered that only 43 percent of surveyed correctional care providers reported that an HIV specialist was “often” available to see patients at their facility. More disturbingly, 38 percent reported that an HIV specialist was “never” available.

Kerry Thomas isn’t surprised.

“Although the medical contract reads like a medical plan comparable, if not better than, a private plan in the community,” says Thomas, “in application it is difficult to get the services we need at times.” 

Thomas, a straight black man, is serving a 30-year sentence in an Idaho prison for not disclosing his status to a woman he had sex with — even though he used condoms, had an undetectable viral load, and did not transmit HIV. 

As a person living with HIV, Thomas is a part of his prison’s Chronic Care Clinic, where he says he sees a provider three to four times a year—just not the same provider.

“It has been my experience that the person I’ve seen is unfamiliar with my case,” he admits. “On one occasion the provider thought I was there for hep C follow up. Although the contract says that counseling and education is offered, it is not at this facility.”

Although he is able to see his doctor from the outside community once a year, Thomas says getting his antiretroviral prescriptions filled isn’t a breeze. “I have to stay on top of the pharmacy to make sure there isn’t a delay,” one that could seriously impact his health.

With so many inmates either learning for the first time they have HIV, or finally having access to health care in prison, it’s not surprising that studies show 75 percent of HIV-positive inmates receive their first antiretroviral treatment while incarcerated.

Living with HIV while locked up adds a layer of complication to what can already be a stressful and life-altering chronic illness.
“In terms of confidentiality,” Jones says, “in prison, it’s not something that exists.” First, he says, inmates cue up in the “pill line” to get their medication and “everyone else can see what you’re getting. You can’t take a handful of pills without other people looking, so everyone knows.”

In the Ohio facility where Jones served his time, inmates with HIV saw a specialist via telemedicine, rather than in person. “You would talk to a doctor on a TV,” he recalls. “They would call you out during count time. I’m up there with five other people and we’re all in this room to talk to this particular doctor. So it doesn’t take a lot for other people to realize we all must be positive.”

In prison culture, where any sign of weakness — or isolation — can open an inmate up to violence and victimization, having other people know your HIV status isn’t something to be taken lightly. “You might be harmed,” Jones admits. “You could be harassed in a lot of ways. You could be ostracized.”

Lara Strick of the Washington-based Northwest AIDS Education and Training Center, encouraged prison administrators and health care providers attending the 2014 Oregon Corrections Conference to seriously consider side effects when choosing which HIV meds to give inmates.

For example, Strick noted that jaundice could broadcast one’s ill health to other prisoners, drowsiness could impact both alertness and a prisoner’s ability to respond to a threat, and one of the biggest side effects of ART, diarrhea, is “a big deal in prison” because inmates don’t have free access to a bathroom. 

For Jones, his time in prison — and his health — were further complicated when he was diagnosed with terminal cancer. The creator of the one-man show about his experience, “And I Die Slowly,” jokes about it now. “Having stage four cancer, with one leg chained to a bed while being depressed? It’s not something you want to experience.”

His cancer added to the many reasons Jones says having “a good relationship with the nurses [makes] all the difference in the world.” A good provider can help you get the right meds, deal with side effects, access facilities, and feel like a human being instead of an “offender.”

The people who see inmates only as “offenders” rarely see the value in providing HIV prevention (especially condoms or needle exchanges) and sometimes even HIV treatment (especially when it comes with a hefty price tag). But prison administrators and public health advocates are starting to see common ground.

Condom distribution has not only reduced transmission inside the L.A. jail system, but has also had a ripple effect on public health in outside communities. 

“More than 95 percent of prison inmates will be released at some point during their lifetime,” adds Nina Harawa, who previously worked in Los Angeles County Department of Public Health’s HIV Epidemiology Program. Now a professor at Charles Drew Universityand the University of California Los Angeles (UCLA), Harawa has launched a number of innovative and successful programs for African-Americans living with or at risk of HIV.

The concern over prison inmates going out into the larger community is what really fuels HIV prevention and treatment efforts inside. Talk about releasing people with undiagnosed or untreated HIV back into a community and suddenly even the most pro-law enforcement public officials may discover the political will — and funding — to preempt a public health nightmare. Add to that the potential that those prisoners may be taking drug-resistant strains back to their home communities and suddenly controlling HIV in prisons sounds like a taxpayer bargain. The Georgia HIV study proved exactly that, that many of the HIV strains in the prison system were drug-resistant and could further compromise efforts to treat the chronic condition, inside and outside prison walls.

All released inmates — not just those with HIV — experience social and economic barriers to their efforts to reestablish connections with friends and family, secure housing and employment, and deal with untreated substance use issues and mental health disorders.

Having served time can bar a person from receiving public assistance and forever alter one’s legal rights. “Upon release, bans on welfare, public housing, educational aid, employment, and voting make it virtually impossible for ex-offenders to have a real chance at life,” notes Brewer in one of his studies. Thus, “almost guaranteeing recidivism.”

Having HIV chips away at even those slim chances of success, particularly because health outcomes for poz people generally plummet post-incarceration. While the majority of HIV-positive inmates respond well to antiretroviral medication during their prison sentence, most discontinued their treatment following release from prison.

In fact, national studies show only 5 percent of inmates receiving antiretroviral medications in prison filled a prescription for the drugs within 10 days after their release and only 18 percent filled one within 30 days. As few as 20 percent were successfully linked to any type of HIV-related care within a month after their release.

A 2010 review of Texas’s attempts to connect recently released HIV-positive inmates to care found that 90 percent of the time there were treatment interruptions; in more than 70 percent of the cases, that interruption lasted at least a month. Over 60 percent of the former inmates experienced treatment interruptions lasting two months or more. 

University of Texas researchers followed HIV-positive “repeat offenders,” inmates who were reincarcerated after being provided discharge planning services like a 10-day supply of antiretroviral medications and assistance applying for AIDS Drug Assistance Program (ADAP) funding for a 30-day supply of meds. One striking finding was that “between the time of release from prison and reincarceration,” inmates experienced dramatic decreases in their CD4 lymphocyte counts and simultaneous increases in their viral loads.

Bottom line: the health of inmates with HIV deteriorated after they were released from prison. These findings aren’t that surprising, given the known negative health outcomes associated with interrupted or discontinued antiretroviral therapy. These interruptions have also been associated with the development and transmission of drug-resistant HIV strains.

Formerly incarcerated people with HIV who had undetectable viral loads at the time of their release were more likely to fill their prescriptions within the first ten days, though, as were those who received assistance completing a Texas ADAP application. 

“It really is difficult to find employment, find housing, or other services that you might need,” Brewer says, repeating what he’s heard from former inmates and trying to explain why people are getting lost after they get out of prison. “So, forget care. You’ve got to worry about other stuff; your immediate needs. You can’t be focusing on going to the doctor yet. You’ve got to take care of your other business.”

When it comes to “transitioning HIV care after release,” Thomas says he’s heard that “there are issues in Idaho in this area.” But his personal experience — he’s been in and out several times while living in the same Idaho city where he was incarcerated — has been consistency in care. In fact, he says, his HIV provider is with the same clinic that serves the prison system. “Therefore I have had the same doctors since 1988 and before my release in 2003 a case manager came out to the prison to determine which services I needed.”

When Jones was released he was given those two weeks of medication he left at the bus station, an action that stuns Harawa. As someone who helped establish similar programs in Los Angeles, Harawa is shocked by Jones’s admission that he discarded expensive antiretroviral drugs in a public venue.

“But,” she stammers, “He was on medication in the jail! Why did he not know what to do with it?” She also worries about the person who stumbled upon the medication after that. “What are they doing?”

Despite Jones’s experience, Harawa still believes in providing people getting out of prison with a starter supply of antiretroviral meds. In the state of California, she says, HIV-positive inmates are “supposed to get 30 days of release meds, and generally people were getting that, and that helped. It might take that long for somebody to reestablish their care, but they were generally able to do so, especially if they already had a care provider before they went to prison.”

Jones says the Department of Corrections in Ohio sends somebody from the health department to visit poz prisoners “maybe 30 days before your release date.” 

“But they need to start that process a lot earlier,” Jones explains. “So I’ve been trying to propose to our Department of Corrections a peer program. To have a positive person that’s been incarcerated…so positive inmates can [listen] to another positive person saying, ‘I’ve been in and this is what I did. If necessary give me a call when you get out, I can go with you to a doctor’s appointment.’ A lot of people don’t even want to go into a hospital, because that’s where infectious diseases breed.” 

That’s where a peer can intervene, Jones says. He now runs a pre-release support group for HIV-positive inmates closing in on their exit dates.

“It’s important to me to make sure that people who are coming out of prison are linked to care,” he explains, proud that the program has gotten a positive response. “I was surprised that people would attend these, that they were bold enough to attend. It’s amazing to me that [it] went so well.”

DeAnn Gruber, STD/HIV Program Director at Louisiana’s Department of Health and Hospitals, agrees that pre-release interactions need to start earlier. Louisiana launches its program 180 days before the client’s release date in order to complete the requisite paperwork and applications for post-release HIV medical care, case management, and ADAP enrollment. Finding that the traditional system offered “a limited focus and little opportunity for dialogue,” Gruber’s department launched a video conferencing program (funded by Special Projects of National Significance) to encourage more back-and-forth communications and hopefully increase the likelihood that HIV-positive prisoners will link to care within 90 days of their release. 

Los Angeles has started a “peer navigator” program, doing much of the same things that Jones hopes to see in Ohio. “There is transitional case management that goes on in our jails,” Harawa acknowledges. “But you know, it often, like beautiful plans, fell apart quickly after people [left jail].”

So William Cunningham, a professor at UCLA, launched LINK LA, a first-of-its-kind program and clinical study that employs people who share backgrounds with those coming out of jail to meet them at the gate upon release, help them access HIV services, and reintegrate into the community. 

“The jail system represents an important aspect of the epidemic that hasn’t been addressed sufficiently,” Cunningham explained when the program began. “Recidivism rates for HIV-positive men are extremely high — it’s like a revolving door between the community and the jail.”

If Link LA, a randomized controlled trial funded by the National Institutes of Health, succeeds in slowing that revolving door, it could end up serving as a model for other correctional facilities — and the communities those released inmates return to.

Post-release programs are making an impact.

“Those who are getting social services, support, case management, and other services, seem to do better,” Harawa concludes. “And that has a positive effect.” 

But, she admits, they still aren’t reaching everyone.

“The people who really seemed to struggle in our study,” Harawa says, “were those who found out [they were HIV-positive] when they got to prison, or maybe they’d only first gotten care in prison. When they got out, they were just — pretty lost. And, unless they found a really good social service provider, or a friend support network who could help them along the way, they seemed to stay pretty lost.” 

This article was produced as part of a 2015 Equal Voice Fellowship awarded Jacob Anderson-Minshall by a partnership of New American Media and the Marguerite Casey Foundation.

[Photo by JoshuaDavisPhotography via Flickr.]