Story by C Jackson Cowart
Photos by Gabi Palacio
CHAPEL HILL, N.C. — Alex Delaney wondered if anybody would ever love him again.
For decades, Delaney had been told that HIV was a disgusting disease — and, by extension, people with HIV ought to be treated as less than human.
Then, in 2010, he became one of them.
“As soon as they hear and see those three letters,” he said, “they just run away.”
Delaney is one of nearly 35,000 people living with HIV in North Carolina, with roughly 1,400 new cases per year, according to a state report from 2016. Over 62 percent of those are African-American, with a rate of 81 infections per 100,000 African-American men — the highest rate in the state.
Three decades ago, an HIV diagnosis was akin to a death sentence. Now, it’s a manageable chronic disease.
David Currin, a nurse clinician in UNC’s Division of Infectious Diseases since 2001, said treatment options have come a long way since the 1980s, when the AIDS epidemic broke out. Currin, who was diagnosed in 1989, took 12 pills per day in his early treatments.
In recent years, the one pill per day regimen has sufficed in bringing most patients to undetectable viral levels, meaning they don’t show signs of the disease and can’t transmit it so long as they stay consistent with treatment.
“Now the focus is on prevention and cure,” Currin said.
Yet fears and naivete about the disease have persisted. The discussions of HIV that were pervasive in the late 20th century have quieted down now with more effective treatment options. But that silence leads to fewer people taking precautions against transmission and fewer yet who understand life after diagnosis.
The epidemic hasn’t faded away — but the conversation has.
“Because of stigma, people are scared to get tested ….” Delaney said. “People who do get tested and find out their status don’t want to start therapy because of the stigma. People who are HIV-positive don’t want to disclose because of the stigma.”
Nearly eight years after his diagnosis, Delaney has accepted and embraced his status. Now a post-baccalaureate student in the UNC nursing school, he’s turned his HIV status into an impetus for personal and career growth.
It wasn’t easy. He’d always been one to care for others, to shield the pain from those who couldn’t handle it. But this pain was his alone to endure, and he couldn’t hide it — even from himself.
***
When the doctors delivered his diagnosis, Delaney broke down.
It was March 15, 2010, a date he can rattle off as quickly as his birthday. He was 23, born to a military family in Radford, Virginia, and raised in the military town of Jacksonville, North Carolina — where he gravitated toward arts and sciences through high school.
He graduated from UNC-Chapel Hill in 2008 with a bachelor’s degree in speech therapy and a minor in music, but he couldn’t do much without additional schooling. So he worked odd jobs: in retail, as a teacher’s assistant in special education, even singing bass in Transit Vocal Band, an acapella group in Raleigh.
Delaney was full of compassion and lacking direction — not unlike any other college graduate.
“I could definitely tell that he was a little lost,” said Christopher Beeson, a friend since 2010.
For Delaney, it felt like his life was just beginning. Then came his new reality, and he wondered if his life could ever be the same.
He had been seeing somebody off and on in the years after college, and he “ventured out” during an off-period before rekindling with his partner, who suggested the two get tested. It was routine for Delaney to get tested for sexually transmitted diseases — every six months at the minimum, every three if he could. It was the least he could do for his health.
So Delaney went to the Student Health Action Coalition (SHAC) in Carrboro and took a rapid antibody test, a preliminary measure for HIV testing.
It came back positive.
“Part of me was trying to prepare for the worst,” he said. “But another part of me was hopeful that maybe somehow it was a false positive.”
Delaney had a working knowledge of HIV, having enrolled in a couple of volunteer research studies in college. But nothing readied him for a potential diagnosis. He told no one; he hadn’t even accepted it himself.
The SHAC medical staff referred him to UNC hospitals for an RNA test a few days later. There, they confirmed the worst.
He couldn’t hide any longer. He started bawling.
“I never really thought it would be me being the one getting it,” Delaney said. “You never think anything’s ever going to be you.”
***
In a booth at Red Lobster, to someone he hardly knew, Delaney said it for the first time.
When the doctors confirmed his HIV status, they told him to seek a place of security and let himself accept his diagnosis; he wouldn’t solve everything in one day. But he couldn’t tell his family, at least not yet. Not until he could shield the pain.
He had already scheduled a lunch that day with an acquaintance, John Pickett, a mutual friend with his old partner. It wasn’t planned around the doctor’s visit. But that day, hours after confirmation, he said it aloud for the first time:
“I have HIV.”
Still, it took a year for Delaney to seek treatment. Doing so meant facing a reality he hadn’t yet embraced.
When he was diagnosed, Delaney says doctors told him his viral levels didn’t indicate he needed treatment. He says that wouldn’t happen now — waiting only increases the chance of HIV developing into AIDS, and it raises the likelihood of spreading it to others.
At the time, though, Delaney didn’t push for treatment. He’d have rather ignored his diagnosis than attack it, not to mention the cost of a prescription without a stable job.
“My initial reaction was to kind of push it away and be numb to it,” he said.
But the feelings kept catching up with him. His off-and-on partner was gone, chased off by his diagnosis. Delaney was alone, stricken by the guilt of a diagnosis he felt he had brought upon himself. He was one of those disgusting people with HIV, and he would be his entire life.
At work, he succumbed to sudden breakdowns and had to vacate the scene just to avoid other people. Yet he craved others’ company, the relationships he was afraid he’d never know again. He worried passersby knew his status — would they judge him for it? Would they ever accept him again? Could he accept himself?
“I’m not even sure I knew exactly what to think,” he said.
Delaney waded into a relationship with someone in 2011, a year after his diagnosis. His partner wasn’t even his type, Delaney jokes now, but anybody was better than nobody. Yet the diagnosis danced around his mind. He couldn’t hide it.
By the time he disclosed, it was too late. His partner felt betrayed, worried that Delaney had infected him.
The relationship was over. The pain wasn’t.
“I didn’t want to be in that position again,” Delaney said.
So, more than a year after his diagnosis, he sought treatment — both to protect himself and those he cared about. He enrolled in a research study at UNC testing an unapproved drug among “naive” patients, i.e. those who hadn’t yet been treated. He received free medication, easing his concerns about affording treatment, for the 96-week duration of the study.
It was one pill per day with no side effects. He’s been on it ever since.
“Alex came in right in the time we were simplifying regimens,” Currin said.
On Oct. 26, 2011, nearly 600 days after his diagnosis, Delaney’s viral load was undetectable. He had accomplished a milestone, one that signaled stability and mastery of his diagnosis.
It was time to share the news.
***
Delaney leaned over the table at his family reunion and whispered it to his older cousin, one of his closest confidantes: “I have HIV.”
“Have you told anybody else yet?”
He hadn’t. Delaney didn’t want to disclose his status to his parents or any of his four siblings until he felt comfortable with it: his numbers in check, his medication consistent, his viral load undetectable. If he had control over it, it’s almost as if his life was the same as before.
“What if it was flipped?” his cousin asked. “How would you feel if they kept that from you and waited so long to tell you?”
He was right. Delaney couldn’t shield the pain any longer.
A few weeks later, Delaney made a weekend trip home for another milestone. This will be easy, he told himself. He’d already come out once to his family — how hard could it be a second time?
It wasn’t any easier. He sat with each family member, one by one, and told them those same three words he first uttered at Red Lobster and again at the dinner table.
They cried, just as he had when the doctor first told him. But he was still human, and they loved him all the same.
After two milestones, Delaney started to settle into his new reality. And through the diagnosis, he discovered a new purpose.
He was fascinated by his own research study and was inspired by the deliberate care of his medical team. He wanted to work in HIV research — both to help others and help himself cope with the realities of his diagnosis — and he was already involved in the LGBT community, a high-risk population for HIV infections.
Meanwhile, Currin and his crew needed a research assistant to help recruit participants for another research study, HPTN 073, which focused on using “C4 assistance” — client-centered care coordination — to address patients’ needs beyond medicine, such as housing assistance or substance abuse counseling.
Delaney was caring, charismatic and connected with the community. It was the perfect match.
“He was the first person I thought of,” Currin said.
Delaney joined UNC as a research assistant in May 2013 and helped recruit for the initial study. His recruitment strategies were adopted for future research studies, too. He was an integral part of the team.
But it wasn’t enough. Delaney wanted to be able to offer the same attentiveness and care that his nurses provided him when he sought treatment. He left the research team in January, enrolling in UNC’s nursing program on an accelerated track for postbaccalaureate students.
His colleagues threw him a surprise goodbye party in December, playing a video with memories over the years. The same medical team that helped him through his diagnosis was now celebrating his departure.
Delaney cried — as he did had in the doctor’s office almost eight years earlier — and his colleagues did, too. This, of course, was different.
“I think people really realized just how much he had given to this unit,” Currin said.
In 15 months, he’ll be back in the medical field, though he doesn’t quite know in what position. It might be nursing education; it might be working in an STD clinic; it might be in HIV research once again.
Beeson advised his friend not to decide just yet: it’s easier to let life run its course than worry about what’s ahead. But he knows Delaney is destined for success as a nurse.
“He gets so much fulfillment from helping people,” Beeson said.
After years experiencing his new normal, Delaney is finally at peace with his status. Now, it’s about helping others feel the same.
***
When Delaney meets someone new, he often starts the conversation in a peculiar way.
“I’m HIV-positive,” he says. “What’s your status?”
It sounds odd at first, almost too casual, but that’s the point. His Facebook page is adorned with pictures spreading HIV awareness. He puts it on his dating app profile, which prompts plenty of inquiries from would-be partners. He’s started copying and pasting his answers; you can only get so creative with basic education.
It’s tedious, sure, but Delaney doesn’t mind. He’s been educating people about HIV for years, and he’s determined to help fight the stigma in any way he can.
“Talking to me about HIV doesn’t give you HIV,” he said. “You’re not going to get it from me just from having a conversation.”
It’s no longer a secret for Delaney. He’s forgiven himself and released the guilt from his initial diagnosis. He’s used the diagnosis as an impetus to improve his general health; he manages his diet and goes to the gym regularly.
And he’s actively involved with others who share his positive status.
“Simply having HIV bonds a lot of us and forms a community,” Delaney said.
He’s not the same man who met Beeson months after his diagnosis or the one whom Currin worked with in the early stages of treatment. He’s stronger now, with a confidence once foreign to the natural introvert.
Beeson says seeing Delaney embrace his HIV status is almost like watching someone stand up straight for the first time. He’s not ashamed anymore.
Delaney still deals with rejection and the pain that comes with it. There will always be those people who find HIV disgusting and treat those with it as less than human. There will always be those who can never love him.
But he doesn’t question his own self-worth. He’s done that enough already.
“Now I know that I am a strong person of high value, that I’m just a normal person like everyone else and we all make mistakes,” Delaney said. “And unfortunately, this just happened to me. It could happen to anybody.”
Delaney acknowledges how fortunate he is. He’s taken the same medication from the beginning, with no side effects and no ill effects from his diagnosis. He hopes his status means nothing more than one pill per day and six-month checkups with his health care provider.
It’s a far cry from how living with HIV used to be, but it’s a chronic disease nonetheless. And it’s all a part of the conversation that can combat the stigma of the HIV epidemic, Delaney says.
It’s a conversation that, eight years after diagnosis, he’s more than willing to have.
“I try not to make it a big deal,” Delaney says, “because, really, it shouldn’t be.”
