HIV exposure laws criminalize private lies in the name of public health, but as medical treatment improves are they really curbing infection or punishing positivity?
By Whitney Mallett
(Illustration: Taylor Le)
The flight’s turbulence didn’t exactly help Mark’s nerves. It had been a short trip, but Mark is a big man to be squished into a small seat, even for two hours. To make matters worse, he was still wearing his suit from the afternoon in the office.
From the airport in Charlotte, Mark rushed straight to the hotel to check in. He wanted this weekend to be perfect. He’d sold his motorcycle to afford an engagement ring and had spent hours in Zale’s agonizing over exactly the right model. Now, with the ring in his pocket, he waited for Stacy outside on the hotel balcony, frowning at the rain clouds overhead.
Mark and Stacy had been dating for the past year and a half. They’d fallen in love fast. Their ambition was what had first drawn them to each other, but now it was keeping them apart. They’d both left Arkansas to kickstart their careers; Mark was now in Washington, D.C., and Stacy in Charlotte. Despite the distance, they were determined to make things work. They saw each other every couple of weeks and planned to move in together. They had even broached the idea of kids in a vague future sort of way.
But there was something weighing on Mark, something that was turning his anxiety up a notch. It had been on his mind ever since he first started falling for Stacy, a year and a half before. And this was the weekend he was going to take the gamble that they were really, truly invested in each other — in good times and in bad, in sickness and in health.
“Is something wrong?” Stacy asked as she joined Mark outside.
He turned to face her. “I want you to know that I’m HIV positive,” he said.
Stacy froze.
A confused look spread across Mark’s face. He’d convinced himself Stacy knew about his HIV status. Months ago, not long after the two had met (and before they had sex, according to Mark), she had come across Mark’s medication in the bathroom. When Stacy questioned what the pills were for, Mark explained that he’d been born with hemophilia, a hereditary disorder that prevents blood from clotting properly. Not everyone with hemophilia has HIV, but, for Mark, the two diseases had always been connected: he and his older brother were infected with HIV as kids while treating their hemophilia.
Mark and Stacy remember this conversation differently. (You should know that Stacy was, at first, apprehensive to talk. She agreed, reluctantly, on the condition that we wouldn’t use her real name in the story. We changed some details throughout the piece to protect her identity.)
Mark says he told Stacy he had the same disease as his brother, explaining how they were both plagued by hemophilia and HIV. Stacy had written down the names of his medications so that she could better understand his condition. He thought she had put two and two together.
But Stacy says Mark didn’t give her any of these clues. When she came across a needle used for blood transfusions, Mark assured her it belonged to his brother, she says. The bottles of pills he kept in the attic all belonged to his brother, he told her. Mark gave her no indication he was HIV-positive, Stacy says. He had even showed her negative HIV test results a few months into their relationship. Now, she suspects they were faked.
Betraying a partner is almost always reprehensible, but not always criminal. Lying about, or withholding information about, an HIV diagnosis, however, could not only put the lives of others at risk — it could also send you to jail.
Say you’re living with HIV in one of the 35 states with exposure laws — you can end up behind bars simply for having sex. That’s right: If you sleep with someone without telling them about your HIV status, that’s grounds, in many cases, for a prison sentence. What if you didn’t even transmit the virus? Doesn’t matter. The laws vary from state to state, and are modified from time to time, but, in most cases, you don’t even have to have sex, you just have to engage in behavior where there’s a risk of transmission. Just hope you’re not in one of 28 states that considers HIV exposure a felony: You could end up serving more than 20 years.
Back in the late 1980s and early ’90s, when many of the exposure laws were first put in place, times were quite different: The AIDS epidemic was at its peak. In 1993, there were more than 100,000 new cases of HIV reported and nearly 40,000 people in the United States died from an AIDS-related illness. The following year, AIDS was the leading cause of death for Americans between the ages of 25 and 44. State officials felt they had to do something to curb the epidemic; exposure laws were their answer. Even as rates of new HIV diagnoses slowed, these laws have stayed on the books. Between 2003 and 2013, at least 428 individuals were convicted of HIV exposure, according to a data set compiled by ProPublica.
“If we are going to have a law like this, it should treat like harms alike.” That would mean we criminalize exposure of other infectious diseases that reduce life expectancy, like malaria or Hepatitis C, the same way we treat HIV.
Exposure laws may have made sense to many lawmakers back in the 1990s, but medicine has come a long way over the past 30 years. The latest antiretroviral therapy (ART) drugs drastically lower the amount of virus in the blood, which, in turn, decreases the chance of transmission up to 96 percent, even when fluids are exchanged — an action often not required for a felony conviction. And the combination of ART and condoms reduce that risk up to 99.2 percent. But only 37 percent of the 1.2 million Americans living with HIV are being treated, according to a 2011 report from the Centers for Disease Control and Prevention. “The goal should be really to get people into treatment and get their viral loads down,” says Pamela Payne-Foster, the deputy director of the Institute for Rural Health Research. Criminalization, Payne-Foster says, can undermine prevention because it adds to the stigma that prevents people from being open about the virus in the first place. Attorney Scott Schoettes, the HIV project director at the civil rights non-profit Lambda Legal, agrees. “If we are going to have a law like this,” he argues, “it should treat like harms alike.” That would mean we criminalize exposure of other infectious diseases that reduce life expectancy, like malaria, tuberculosis, or Hepatitis C, the same way we treat HIV.
Despite medical advancements, some lawmakers aren’t quite ready to let go of HIV exposure laws. Arkansas’ William Jones, who’s prosecuted several HIV-exposure cases, explains it from the victim’s point-of-view. Even if they don’t become infected, he says, “they are still going to feel violated and helpless.” He compares what Mark did to “encouraging someone to walk along the river, knowing that there are some loose rocks but not telling them.” Louisiana District Attorney Jerry Jones maintains that the same question legislators asked decades ago remains relevant today: “What period of time in the penitentiary would be adequate to call it justice if a healthy young girl is given HIV or AIDS? What’s a sufficient law to tell someone that they’re going to die?”
Mark and Stacy never went out for dinner that night. He says that they eventually ordered room service, and, when it came, Stacy was still in tears. The hotel waiter asked Stacy if Mark, who’s built like a linebacker, 5’10’’ and 208 pounds, had put his hands on her. She insisted he didn’t. The waiter eventually left, but Stacy’s distress lingered all weekend.
Every time Mark would try to console her, Stacy winced. She told Mark she would never speak to him again. The next day, the couple went to a nearby clinic for Stacy to be tested.
Forty-eight agonizing hours later, the test results came back: negative.
Stacy says that she was relieved, but not entirely: HIV can take up to six months to be detected, so she would need to be tested again. She had half a year of waiting left to see if Mark had infected her.
Mark says that he left for D.C. later that day, the engagement ring in his pocket.
That week, the two began to brawl over email. “I can’t think, my nerves are bad, my god damn hair is falling out,” Stacy wrote to Mark. “WHO GIVES YOU THE RIGHT TO TAKE PEOPLE’S LIVES?????? I hate that you put me through this.”
“I was scared of rejection,” Mark tried to explain. “Though I endangered you; you were never at the bottom of my heart. I lied about my health out of fear of you leaving.”
Weeks passed and Stacy prepared herself for the worst. Plagued by the stigma of a potential HIV-positive result, Stacy put on a “poker face” and visited Mark in D.C. He was the only person she could talk to about her inner turmoil. They tried couples therapy for a few months, and Mark even let Stacy accompany him to check-ups with his own doctor so that she could understand how he managed life with the virus.
Exposure laws in most states don’t take intent into consideration. They don’t factor in whether someone is taking medication or using condoms or any other measures that greatly reduce the risk of transmission.
Mark says he wrote Stacy in August to break things off; the distance just wasn’t working. Stacy remembers differently. She found it difficult to trust Mark again. Months after the proposal, she discovered that Mark had lost his job — and had kept it from her, again. “He is a liar and a reckless person,” she says. Fortunately, it wasn’t long before Stacy received her results from the second HIV test: they were negative. She was free of HIV, of Mark, and of his lies.
But not quite. The following spring, Stacy found out about HIV exposure laws for the first time and decided to press charges. As soon as her allegations reached the local news, another one of Mark’s exes followed suit. She, too, was HIV-negative.
Mark was sentenced to 12 years in prison.
Exposure laws in most states don’t take intent into consideration. They don’t factor in whether someone is taking medication or using condoms or any other measures that greatly reduce the risk of transmission. What’s more, they don’t even apply to the group most frequently spreading HIV: individuals who don’t realize they have it. Only those who knowingly expose someone can be prosecuted.
In Arkansas, where Stacy pressed charges, HIV exposure is a Class A Felony, in the same category as second-degree murder and human trafficking, and punishable with a minimum of six years and a maximum of a life sentence, depending on the individual’s record.
For someone like Mark, who manages the virus through ART, whose chance of transmission is less than 1 percent, how do we measure the risk? Still, sex is only consensual when one is cognizant of the inherent risks, however low they might be.
Mark grew up in a small, northern Louisiana town called Grambling. Originally a farming village settled by newly freed slaves after the Civil War, Grambling is extremely rural, decidedly Southern, and nearly homogeneously African American, with a population just shy of 5,000. Instead of a traffic light at the intersection of Central Avenue and Main Street, there’s a church and a turn-of-the-century historic black college: Grambling State University.
Mark’s father worked in the military, eventually as a sergeant major, and was gone for weeks or months at a time. As a child, his dad’s homecoming was a fever of excitement. He’d take Mark and his older brother and sister out to places like Burger King, vexing “Don’t tell your momma I took you here … she wants you to be proper.” Mark’s mother, Hazel, taught etiquette classes. Manners and poise were important to her. She had moved to Grambling in her early twenties for college, and, after graduating, she married, had children, and worked in social services.
Now 75 years old, she’s still exceptionally active in the community, the president of a couple local foundations, and an elected official in the local parish. She’s a very proud woman, especially of Mark. “I can talk to people and say, ‘Sure, I have a son that is HIV-positive,’ and I say it with pride,” Hazel says. But it wasn’t always easy for her to be so open.
Hazel is a carrier of hemophilia. When both of her sons were born with Hemophilia Severe A, she dedicated much of her life to managing their condition. Once a year, she’d drive them five hours to their appointments at Tulane Medical Center. She even sent them to a summer camp for hemophiliacs, so that the boys could learn how to manage the disease and how to self-transfuse as needed.
“We were so happy that [the doctors] had something to stop hemophiliacs from bleeding. Happy, happy, happy!” Hazel remembers. “And then all of a sudden … it was something that was killing them.”
When Mark was seven years old, his family learned that he and his brother had been infected with HIV during one of their regular blood transfusions. This was actually not uncommon: from the late 1970s to the mid-’80s, roughly half of hemophiliacs were infected with HIV after being treated with contaminated blood products.
“When we found out,” Hazel says, “we were told, ‘Don’t tell anyone.’” The year was 1981. AIDS was still being called a “gay-related immune deficiency.” A culture of silence and fear surrounded the emerging health crisis, largely because there was so much unknown. Hazel thought that keeping quiet about her son’s condition would protect her family. “People were doing horrible things,” she says. As the virus spread, prejudices did too. In the small town of Arcadia, Florida — which was not too different from Grambling — three brothers contracted HIV through contaminated blood products and the town had burned their family’s home to the ground in 1986.
Suddenly, when he was 20, Mark’s brother, eight years his senior, died of AIDS complications. “At that moment,” Mark says, “all I knew was that I probably wouldn’t live past 28.”
In this climate of fear, Hazel and her husband decided to keep the HIV status of their sons a secret — even from the boys themselves. Mark remembers his mother waking him up in the middle of the night to feed him a cocktail of pills. He also wore a pager-like device at school that would beep when he had to take medication. “I never knew exactly what it was for so I always assumed it was for my hemophilia,” Mark says.
When Mark was 17, his parents thought he was old enough to understand what was really going on. During one of his regular hemophilia check-ups, his doctor disclosed his HIV status. “I was angry,” Mark recalls. “I didn’t necessarily know how to handle it.”
The gravity of the situation did not entirely dawn on Mark until people around him started disappearing. Fellow patients he knew from the hemophilia treatment center wouldn’t be there anymore. Friends at summer camp wouldn’t come back the next year. Nevertheless, Mark just took his medication and went on with his life. He started college at Grambling State and kept himself busy with his studies. But then, suddenly, when he was 20, Mark’s brother, eight years his senior, died of AIDS complications. “At that moment,” Mark says, “all I knew was that I probably wouldn’t live past 28.”
Haunted by his brother’s death, Mark found it difficult to get close to anyone. He started to date women in college but had never been open about his HIV status with anyone besides his family. “It’s strange,” Mark says. “When the relationship got serious to the point that it might become physical, I would find a way to break up with them even if it meant saying that I was dating another girl. She would say, ‘Oh, he’s a dog. He’s dating other women. He doesn’t want me anyways.’ I would do things like that knowing that inside me, I didn’t know how to deal with HIV.”
The specialists at Mark’s summer camp had discussed safe sex with him, but he doesn’t remember any adult talking to him about HIV exposure laws — even though they were just beginning to be enacted around the country. In fact, when Mark was first informed of his positive status, around 1990, it was already a few years after Louisiana passed its first exposure law.
Mark eventually had more serious, long-term partners and insists he told them about his status before having sex. While these were hard conversations, what was ultimately even more difficult was dating with an expiration date. For Mark, being honest about his HIV status was wrapped up in being honest that he wasn’t expecting to live much longer.
“I reached a point of depression,” Mark says. After finishing his master’s degree, he moved to D.C. to pursue a career in defense and policy analysis. Eventually, he started seeing someone. On one of their first few dates, Mark took her out to dinner and decided to tell her about his status. “She just walked out of the restaurant,” he says. “I started to revert back to being fearful of telling people.”
Mark and Stacy met when they were students. Mark was in graduate school in Fayetteville while Stacy was near the end of her undergraduate degree in Little Rock, a few hours away.
Early on in their relationship, Mark was “really nice, really caring, really loving,” Stacy says. “He was this really polished, professional guy that anyone would want to be friends with. [He seemed] that he had it all together, and had everything planned to a T.”
At this point, Mark was looking for something serious. “I just wanted to be in a relationship and be married,” he says. “I just wanted to be normal.” His father had recently passed, and he craved closeness. When he met Stacy, he was “just in happy-go-lucky love land.” Despite the distance, the relationship remained his top priority. “I thought she was the one,” he says. “Simple as that.”
Mark says he took every precaution to protect Stacy, always using condoms and never missing a pill on his daily ART regimen. But he kept his HIV status to himself. “Was my intent to harm this woman?” Mark asks. “No.”
In the three decades since HIV-specific laws were first enacted, only the state of Iowa has re-considered its language. In 2014, when an HIV-exposure case was appealed at the state’s Supreme Court level, the defendant’s attorney, Scott Schoettes of Lambda Legal, introduced scientific evidence to weigh the real risk of transmission in the situation. The court decided that, since there was only a tiny chance of transmission (the defendant was using ART drugs), he couldn’t be held accountable for endangering his partner.
“I found that there are people in this world that will accept you for who you are,” he says, “but first you have to accept yourself for who you are.”
Based on this case, Iowa introduced a tiered system that makes sentences contingent upon intentional and actual transmission; reckless disregard and actual transmission; intent to transmit but no transmission; and reckless disregard but no transmission. What’s more, the law is no longer HIV-specific — it treats other infectious diseases the same way.
While there are still states — namely, Missouri, Rhode Island, and Texas — trying to make penalties harsher, there have been some recent signs that attitudes are beginning to change. In 2014, the Department of Justice released a best practices guide for HIV-exposure laws, advising states to only pursue criminalization in the event there was intent to transmit the virus or significant risk of transmission. California Congresswoman Barbara Lee has repeatedly tried to pass a national bill that would force states to repeal HIV criminalization laws. And actor Charlie Sheen started the first mainstream discussion of HIV transmission and the associated medical risks when he opened up about his positive status in November.
For now, though, these laws still put people behind bars. Mark spent nearly three years locked up. He was released in the spring of 2011 — nine years early, on account of good behavior. He’s been trying to put his life back together ever since. It’s tough. Not least of all because, in Arkansas, like in many other states, being found guilty of HIV exposure means you’re a registered sex offender for 15 years. “When I have to show my license, [it ’s] the first thing they see,” Mark says. It’s a label that makes getting any job a challenge, not to mention the career he had been studying for in defense and policy analysis.
After his release, Mark moved back in with his mother in Grambling and started a Ph.D. program in education (while incarcerated he taught classes to inmates). For the first time in his life, he got involved in the HIV/AIDS community, and he’s been sharing his story to advocate against non-disclosure laws. And finally, last fall, Mark got hired as the deputy tax assessor in Lincoln Parish, Louisiana.
Mark is in a serious relationship now too. He disclosed his HIV status after just two weeks of knowing his new partner: “I found that there are people in this world that will accept you for who you are,” he says, “but first you have to accept yourself for who you are.” The couple is now engaged.
It’s been more than a decade since Mark first proposed to Stacy. I met her on a humid afternoon in Arkansas. She’d taken the afternoon off work to meet me at the county prosecutor’s office. Sans make-up, she wore a pin-striped suit with a bright pink V-neck, her hair pulled back in a tight bun. When I had first reached out for an interview, months earlier, she had refused. After searching Mark’s name online, though, she realized that the version of events he was presenting in his advocacy work was different from the one she remembered. It was then that she decided she wanted to tell her side of the story. As we sat in the office waiting room, I could sense her reticence.
Eventually, as she recounted her relationship with Mark, distress broke through Stacy’s walled demeanor. Tears streamed down her face, her vulnerability emerging like an unwanted compulsion. “I have not had a long-term relationship since [him],” she confided. “I find it hard to trust men.” She says the whole ordeal wrecked her confidence and now she second-guesses her instincts. “I can’t believe I didn’t know he was lying. I am usually really good at picking up on that kind of thing,” she confessed. “He had everybody fooled.”
Stacy connects Mark’s deceitful behavior to a childhood of having to hide being HIV positive. “He is a compulsive liar because he got trained [to be one] as a child,” she says. It’s complicated. The same laws that regulate honest disclosure of one’s HIV status also perpetuate the stigma that leads people to hide their status in the first place. Stacy, though, doesn’t see non-disclosure laws as a problem. “If they didn’t have this law then he would have gotten away with it,” she says. “This law protects me and all the other women.”
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