Victoria Drain doesn't know how long she has been HIV positive. She was never offered an HIV test during the months she spent in an Ohio county jail.
It was not until she was sentenced and sent to Ohio's prison system in July 2016 that she was screened for HIV. "Your second morning there, every new offender undergoes a series of blood work, HIV testing not only included, but mandatory," Drain, a trans woman sentenced to a men's prison, told TheBody.com via letter. "A couple weeks later, I'm called to medical and received the news of my HIV result."
Kodi Faircloth, on the other hand, knew her HIV status by the time she was arrested in June 2015. Nine months earlier, she had been hospitalized after being badly beaten by her daughter's boyfriend. She spent three days in the hospital; during that time, she says, no one said anything about HIV to her.
One month after going home, she received a phone call from hospital staff telling her that she had HIV. In response, Faircloth remembered, "I did heroin and ice for nine months straight. I didn't see a doctor at all in those nine months after I found out. I was so ashamed and embarrassed, and I just wanted to die."
Faircloth was later arrested and spent 90 days in the Tulsa County Jail. Though she told jail officials about her HIV status and asked for medication, she received none, she said.
It was only after she entered Mabel Bassett Correctional Center, Oklahoma's largest women's prison, and sent 45 requests for medical care that she was finally able to see a doctor. "On Nov. 2, 2015 (on my 39th birthday), I was told that I had full-blown AIDS. CD4 [count was] 35," she wrote. Even then, it wasn't until mid-November that she finally began receiving medication.
Related: Behind Prison Doors
The rates of HIV among incarcerated women are higher than those of their non-incarcerated counterparts. In 2009 and 2010, the Bureau of Justice Statistics found that 1.5% of women in state and federal prisons were living with HIV or AIDS, a slight decrease from the nearly 2% in previous years. These numbers do not include the number of trans women with HIV housed in men's facilities.
In many prisons, information about HIV is scarce. Oklahoma is no exception. Faircloth says that no information is available at the prison's library or in its medical department. But even if information were available on the shelves, Faircloth faces another obstacle -- she is blind and can only read braille. Until recently, the prison's only braille book was the King James Bible. Several months ago, she received several mystery novels in braille from DC Books 2 Prisons, an all-volunteer group that sends reading material to incarcerated people. These are the only books that she can read on her own.
For everything else (including her correspondence with TheBody.com), she must rely on others for help. The prison assigns her another incarcerated person who acts as her orderly and helps her navigate through a prison environment ill equipped for those who are blind or vision-impaired (According to Faircloth, she is the only blind person in the prison.) Faircloth also depends upon her orderly to read to and write for her. If that person dislikes writing, or chooses not to, then Faircloth is unable to dictate letters to seek outside information (or even to thank people who have already sent books and information).
Fortunately, Faircloth's latest orderly, Belinda, or BJ as she's known to the women around her, is more than willing to read to and write for her. "I keep our room sterilized, very clean," she wrote in a letter to TheBody.com. She also ensures that Faircloth gets to the dining hall in time for meals, the pill line for her medications, doctor's appointments, and GED classes. "I try to take care of Kodi, making sure she gets her meds and appointments, but I'm not any doctor," wrote BJ, who added that she had worked in the medical field before her incarceration.
Facing Stigma, Ostracism and Violence
Christine Johnson already knew her status when she entered the North Carolina Correctional Institution for Women in January 2014. "I have been HIV positive for little over 20 years," she wrote in a letter to TheBody.com. "The virus has been suppressed for almost eight years. I am very open and honest in prison, as well as on the street, about being HIV positive," she explained. But that openness comes with a price: Johnson faces shunning, stigma, and violence on a daily basis. She has been physically attacked, leading to a black eye, several bruises, and a broken left foot. "On a daily basis, I am isolated, stolen from [and] called names," she wrote. "I've been called pissy, shitty, AIDS-toting bitch." She's also had her medications, food, and clothing stolen from her, acts which happen not simply because she's in prison but because she's open about her status in prison.
The stigma and violence largely come from the other incarcerated women, most of whom have little to no knowledge about HIV. There's no easy way to get information, either. Like many prisons, there are no programs or classes about HIV and transmission, leading to fear and ignorance. Johnson believes offering such a class or program would help curb the ignorance, violence, and stigma. "I believe that when women come in on reception [they] should take classes on how you can catch HIV," she reflected.
Peer education is how people incarcerated in New York state fought the stigma and violence against people with HIV in the 1980s and 1990s. But the HIV programs available in New York's prisons remain an exception rather than the rule, with most jails and prisons failing to offer educational or support programs around HIV.
Despite Past Victories, HIV Care Can Still Be Substandard
"I tested poz in 2000 at Corcoran," wrote Penni Bullington in a letter to TheBody.com. Bullington is a trans woman who has spent 28 years in and out of California's prison system. But, she continued, she "wasn't told or given my test results till the day I paroled from Mule Creek [a different prison] in 2002. So every single person I tattooed, shot dope, had sex with, is now [or] could very well be HIV+."
Bullington had been in various California prisons throughout the 1990s and, both inside and out, watched many friends fall ill and die from HIV-related complications. Despite their deaths, she said, "I use to think I would never get it."
In the early 1990s, Brian Carmichael and other people imprisoned in California led hunger strikes to end the forced segregation of people with HIV and improve HIV care in California's prisons. Their efforts resulted in the building of the first-ever prison hospice, as well as a legislative investigation that condemned prison medical care in California.
Despite these gains, prison health care in California remains largely inadequate due in part to severe overcrowding. In 2006, in response to a lawsuit brought by prisoners, federal judge Thelton Henderson ruled that California's prison health care was so bad that it violated the Constitution's ban on cruel and unusual punishment. He appointed a receiver responsible for raising prison medical care to constitutional standards.
Five years later, however, medical care remained below constitutional standards and, at times, life threatening. The U.S. Supreme Court weighed in, ruling in the 2011 Plata v. Brown that California's prison overcrowding prevented adequate medical care, thus violating the Eighth Amendment's ban on cruel and unusual punishment. The Supreme Court ordered the state to reduce its prison population, which it did partially by keeping people with shorter sentences in county jails and transferring other people to private prisons out of state.
Bullington, who has been transferred to several different facilities since returning to prison in 2004, says that each time she arrives at a new prison, her medications, medically ordered diet, and medical appointments are cancelled. "You will wait on a doctor or nurse practitioner to see you within 90 [days] of your arrival," she explained. "You will see some doctor on a Skype/telemedicine [call] who will dictate if you get to keep any of your [medical] stuff. But generally, you have [already] gotten sick and had to file an emergency 602 appeal to get services." (A 602 is a written complaint, or grievance, about prison conditions or practices.)
This uneven access to care and medications has taken its toll. Now, 15 years after she first learned her status, Bullington reports: "I'm so sick that I've had a MRSA infection for over two years, open sores that cover all my clothes, bedding in blood & puss. It's so bad that correctional staff refuse to search my cell, allow me in the chow hall [or let me] use inmate laundry or have [a] cellmate."
In Oklahoma, though Faircloth now receives medications, they're not always consistently given. Starting around Christmas 2015, the prison ran out of medications for over two weeks. Missed doses can lead to the development of drug resistance, which can make HIV treatment ineffective. Even if medication gaps don't result in resistance, treatment lapses can make it difficult to maintain undetectable viral load. An undetectable viral load decreases the likelihood of HIV transmission, making it a vital HIV prevention strategy in the vast majority of prisons and jails that ban safer sex and injection equipment.
The missed medications may have had other effects for Faircloth. "I began having flu-like symptoms, and I began throwing up blood, and I had diarrhea with blood in it," she wrote. "I lost 30 pounds. The lasting side effect from that incompetency episode is I cannot take the medicine without Phenergan now."
Once a year, Faircloth is brought to a room with a video screen where she "meets" with the HIV specialist, a practice known as telemedicine. "She reads our labs by email," she described. "The appointment lasts only three to five minutes." The specialist then instructs the prison's chronic care doctor about any follow-up treatment that Faircloth might need. Then Faircloth is escorted from the room until the next year's visit.
Faircloth undergoes blood tests every four months, but, she writes, "Unless we stay on them, we never get our blood results." In 2017, she began having fevers; lesions began to erupt on her face. Though she put in sick-call after sick-call request, she wasn't able to see a doctor for eight months. The doctor prescribed Bactrim, an antibiotic used to treat bacterial infections.
Choosing to Refuse HIV Meds
In Ohio, Victoria Drain has had little difficulty obtaining HIV meds. Within two months of her diagnosis, prison officials sent Drain to an infectious disease doctor and prescribed Genvoya. But Drain opted to refuse treatment. "In order to fully understand my position, you'd have to be sitting in my cell, wearing my shoes," wrote Drain, who is at the maximum-security men's prison in Lucasville, where overcrowding and other conditions led to an 11-day riot in 1993. Twenty-five years later, Drain describes the prison as "a place known to house the majority of Ohio's known gang members and violent offenders." She says, "I am a target here and my HIV status is common knowledge due to 'breaches' in confidentiality from staff to inmates, although if asked, I never deny it."
She is currently in the prison's segregation unit, a form of isolation in which she spends at least 23 hours a day locked in her cell. (Even when prisons say they are placing prisoners in segregation for their own safety, it is the exact same system most commonly known as solitary confinement, a practice which has increasingly come under fire by activists and the medical community in recent years.) Though prison medical staff readily offered her HIV medications, they would not give her hormones. Drain filed suit for hormone replacement therapy, but lost. Though Ohio's Department of Correction has offered hormone treatment to at least one other trans woman in its custody, Drain's petition and subsequent appeals were denied. "All I have is me, in this mistaken body, in this cell," she wrote.
To track the deterioration of her health, Drain allows medical staff to check her viral load and CD4 count every 90 days, noting that, in the absence of medications, her viral load is increasing while her CD4 is decreasing.
"I decided to refuse my medication because I have a life sentence," Drain explained. "I'm afraid to outlive my mother, who is 60, and be left 100% alone in prison to die alone without outside support and be buried by the state in a prisoner graveyard. I'd rather die while my mom's alive and go home close to her. If I had three years and not 38-to-life, I would take meds, for sure."