Faced with discrimination, HIV patients cope with their disease
Story by Cody Newton
Photo Illustrations by Ariane Kunze
I wish I could paint you a dramatic picture with images of how the steam rose from the 150-degree latte in front of my father, blurring the fearful expression he fought to hold back. I wish I could recall the color of his shirt, or the way his bracelets slid down his wrist as he nervously raked his fingers across his facial hair, creating that distinctive crunching sound. But despite it being only six years ago, I can’t.
My little sister, Mariah; my father, Nelson; his partner Gordon; and I sat at a little steel table smashed between Café Aroma, the information kiosk, and a hundred dull faces all mulling about the Valley River Center in Eugene, Oregon. All other details are gone, eaten alive by the beast of a cat my father was about to let out of the bag. My thoughts were spastic. Did I do something wrong? Did someone die? When my father spoke, his words were fatigued: “OK, I’ve got something heavy . . . pretty drastic for you two to hear. However, I need to tell you, I’ve done a lot of research, talked to a lot of doctors, and I’m going to be OK.
“I have HIV.”
It never occurred to me that someone I loved could get HIV, and I imagine I’m not alone.
Over a million Americans have HIV and most have learned that it carries more than a fear of death: the disease also brings a heavy load of judgment and discrimination.
It took my dad two months before he felt he was ready to tell Mariah and me that he was sick. He later told me how he debated telling anyone, even his own children.
I asked my dad what had to change for him to be more open about living with HIV. He admitted that it’s a hard question to answer. There is so much information about HIV that he’s surprised people still treat the subject like the plague.
About a year ago, my dad ended a friendship due to such a reaction. My dad, a hairdresser, often helps out friends during his off hours. He was cutting a friend’s hair in his kitchen when he nicked his finger. She lost control and started shouting, “Fuck, you’re bleeding! How am I going to tell my husband? Fuck, I’m going to have HIV now!”
She was completely safe. She had no open sores and my father’s blood didn’t even touch her. It’s reactions such as this that my father hopes will end.
Because of his disease, my dad has experienced similar scenarios in places he should feel safe—hospitals and doctors’ offices. He recently went to the emergency room for stitches after slicing his thumb while laying linoleum. The nurse, wearing gloves, began to clean the wound and go over his medical history. When my dad told the nurse he had HIV, the nurse panicked. He stopped what he was doing and left to get his supervisor. A doctor came in to finish and blew it off as if nothing had happened. “I’m pretty sure that was [the nurse’s] first time handling something like that, and he didn’t do very well,” my dad says.
My father’s situation isn’t unique. Angela Jones, a fifty-year-old mother of two and peer counselor from Atlanta, Georgia, has been living with HIV for over twenty-six years after a botched blood transfusion. Much like my dad, she constantly experiences discrimination. Jones has seen doctors put on two or three pairs of gloves, then suit up in extra gear and equipment. She says it makes her feel bad—as if she’s some sort of burden. She’s been to the dentist and watched the hygienists do their best to keep their hands off her. One dentist went to measure a sizing plate and simply looked into her mouth and guessed the size.
“They didn’t even want to touch me,” she says.
When it comes to the medical industry, Jones feels that it’s a losing battle. She, like my dad, is dependent on pharmaceutical companies. Jones’ HIV medication, Atripla, costs her $1,500 a month, while my dad pays $2,000 per month for his medication. Jones says that with all her medications, treatment, and hospital visits she can pay upwards of $25,000 a month.
Atripla is distributed by Bristol-Myers Squibb & Gilead Sciences. Bristol-Myers reported sales of almost $19 billion in 2009. Jones says the problem is they are making too much money being made. She says they’re not going to tell people how much they know—that HIV doesn’t have to kill you. “They can make their money behind fear,” she says. For her and my father, that fear has led to discrimination.
Every year, Americans put billions of dollars into fighting HIV, yet every year, approximately 56,300 Americans are infected. Many people feel HIV discrimination is a key factor. If people are afraid to reveal they have HIV, it will just keep spreading. Jones had a relative who wouldn’t admit he was carrying HIV. He witnessed multiple girlfriends die from AIDS as a result of their relationship until the disease killed him in 2001.
Susan McCreedy, HIV case manager for the Ryan White Foundation in Bend, Oregon, has worked with HIV patients for years. “The discrimination [against people with HIV] is more out of homophobia and fear than out of anything else,” she says. When people experience this discrimination they’re less likely to request care.
Another effect of the stigma that McCreedy noticed is that it keeps people out of care. “They don’t feel like they’re worthy of it,” she says. Many of her clients have been “passively suicidal,” as she calls it. “[Patients are] purposely choosing not to stay in care, choosing not to stay on meds that may have been prescribed because for whatever reason, they let themselves die,” McCreedy says.
Recently, McCreedy had a client die for that very reason. He started using methamphetamine while living in a large city. Somewhere along the ride he became infected with HIV. He started losing friends and ended up at St. Charles Hospital in Bend, where he met McCreedy. He began treatment and moved in with his parents. “He’s living back with his parents who never accepted him in the first place because he’s gay. Now he has AIDS, and they’re incredibly judgmental, but they’re trying to be supportive,” she says. “They don’t know what to do and they don’t have any support for having a child with HIV. They’re just clueless.” According to McCreedy, there was no need for him to die. He just let go. She saw four similar tragedies play out in just three months.
Jones knows this feeling all too well. “Your mind controls every aspect of your body. Once you give up mentally, that’s it,” she says. Even my dad admits he’s not living because of the pills; he’s living because he wants to.
Approximately 18,000 people die a year in America from HIV/AIDS-related deaths. The website Mental Health Matters states that a person with AIDS is twenty times more likely to commit suicide. People like McCreedy don’t think that’s necessary.
“They don’t feel like they’re worthy of existing. Some of them will come into case management apologizing to me for their situation, like they’re such a bad person,” she says. “It’s really sad.” According to McCreedy, this problem is rampant and only getting worse.
My dad asked my sister and me not to tell anyone he had HIV. “Don’t tell your friends,” he said. “Your friend’s parents probably won’t let them come over to the house anymore.”
In grade school, principals hosted fundraisers for kids’ parents who had cancer, but I kept quiet about my dad. I have close friends who won’t know my dad has HIV until they read this article. This disease infects all aspects of life.
McCreedy explains that if it’s going to get better it needs to begin at home. “The thing we know that changes attitudes about things like fear of difference or homophobia, or fear of a disease like HIV, is knowing somebody personally who is affected by the disease. It’s one of the only things that changes attitude,” she says.
The HIV Alliance of Lane County in Eugene, Oregon, has implemented programs to do just that. Janet Bott, an assistant for the HIV Alliance’s Speakers in Schools program, says they “place people who live with HIV or AIDS into classroom settings, and they share their life story.” Bott says they’re willing to tell students the truth about living with HIV. People with HIV don’t just experience stigma from the public, but often within their own families as well. “It’s a culturally pervasive problem. Living with HIV, you’re instantly in a discriminated class,” Bott says.
Jones chooses not to date these days. A couple years ago, Jones became acquainted with a man interested in dating her. She asked if he knew she had HIV, and that they would need to use a condom when they slept together. He simply replied that he didn’t like to use condoms. My dad has encountered similar situations.
A man my dad slept with went to the police station, called my dad, got him to admit he had HIV and that they slept together, while the police secretly listened in. Charges were filed and my dad had to go to court to get out of it. Because of this, my dad says he wouldn’t date anyone that isn’t HIV positive.
Bott believes that we can fix these problems. “We’re working through education to change what’s normal within our cultural paradigm,” she says. “It’s a way of getting to people’s minds and hearts. Because you can hit people with logic all day long, but most of our decision-making isn’t ruled by logic. It has a strong emotional content to it.”
Unfortunately it’s harder to get people to speak out about HIV in smaller areas.
“Really the best thing is to get people who don’t have HIV to come out into the community, and stand up and support people who are gay, or who are living with HIV,” McCreedy says.
Jones is now a volunteer with Speakers in Schools, talking to students about what it’s like to live with HIV and what they can do to be safe. “We’re the land of the free,” she says. “We should have the freedom to sit down and discuss these things.” After twenty-six years, Jones still doesn’t understand why so many in our society close the doors and walk away from this breed of discrimination. But she’s doing her best to open them.
Being open about having HIV isn’t easy for my dad either, but it’s helped him stay well. At forty-seven, he is healthier than ever and shows no signs of slowing down. To him, the most positive aspect to being open about his HIV is simple education. As he explains with his characteristic bluntness, “If people weren’t stupid, they wouldn’t be afraid of me.”
For Susan McCreedy and the HIV Alliance, communication is the most effective way to get people into treatment. There has to be willingness in everyone—not just those already affected by HIV—to be open and unafraid. For people to feel safe admitting they are HIV positive, they must first live within a culture sensitive to the struggles and stigmas faced by those with the disease.
The issue of HIV discrimination is as old as the disease itself and it isn’t always easy for people to talk about. Navigating through the cloud of misinformation surrounding the affliction can be just as difficult, but ignoring the issue doesn’t make it disappear. For my father and Jones, being open about HIV has made living with it easier. Easier not only to seek treatment, but also to recognize the friends they didn’t need, while cherishing the ones they’ll love forever.
