It started with the name pneumocystis. That was 30 years ago, June 5, 1981. It came as the first warning from the U.S. Centers for Disease Control and Prevention (CDC) about a particular kind of pneumonia killing young, gay men. It took another year before the CDC uttered the acronym “AIDS” (Acquired Immune Deficiency Syndrome) and a year more to recognize it as a virus (HIV or Human Immunodeficiency Virus), primarily transmitted by sex and needles. The first recorded case of AIDS in Nevada was in May 1982.
Those who remember the ’80s remember the devastation, whether you were in Nevada, California or anywhere—the wasting-away images, the safe-sex warnings, the anti-gay sentiments and, most of all, the death that came with HIV. More than half a million Americans have lost their lives to HIV and related diseases. Back then, it was a terminal disease, seen as something afflicting only white, gay men and intravenous drug users. People were given days, weeks to live.
Three decades later, the face of HIV/AIDS has changed. It’s treated as a chronic disease, and more than 1 million people in America are living with HIV/AIDS. Since 1996, drug “cocktails” have helped keep HIV and AIDS symptoms under control for many—but not all—people. It’s no longer seen as a “gay” disease—it’s something that affects everyone, male and female, young and old, black and white, Hispanic and Asian and more. The CDC says that an estimated 40,000 people are infected in the United States each year. That number has remained steady for about the past decade.
In 2009, the most recent year available, the CDC estimated that there are 6,863 people with AIDS living in Nevada, 518 of whom were diagnosed that year. That’s number translates into a rate of 10.6 people per 100,000, which is just below the nationwide average of 11.2.
Thirty years of AIDS have brought 30 years of stories—tragic ones, for sure, but also stories of survival, revival and triumph against long odds. And if those odds are becoming better every year, the fight—for individuals and for society—still requires extraordinary effort, understanding and endurance. Here are the stories of three Southern Nevadans who have been in the thick of the battle.
Stacy Young, The Single Mom
In 2009, Stacy Young was sick with pneumonia. It seemed like yet another challenge in a devastating year for the then 33-year-old—she’d lost her job, her relationship with her boyfriend of six years had just ended, and she was doing everything she could to raise her boys, who were 13 and 8 at the time. She’d been sick on and off, so much so that she’d lost 75 pounds by the time the pneumonia struck. When she went to the doctor, she was tested for HIV. That’s when she found out she had AIDS.
She didn’t know anything about HIV beyond the horror stories she grew up with in the ’80s. “I thought I was just going to die,” she says. Who will take care of my kids? she wondered. It took some time before she learned otherwise. She began going to counseling at the Community Counseling Center and at Aid for AIDS of Southern Nevada (AFAN) and realized that if she stayed on medication, she could live 30 or more years. “I learned that I’m still able to live,” she says.
In the beginning, she was taking 13 pills a day. Already on unemployment, she was too sick to look for a job. She was relieved to learn about AFAN’s Parent-N-Me Program, which works with single mothers and their children to provide housing, utility assistance and child care. The program also teaches women about budgeting and household management, and a registered dietitian demonstrates how they can plan meals and make quality food on a budget.
“It helped me out because I wasn’t working,” Young says. “I didn’t have a place to live. It really helped.”
The disease has been hard on her. She’s lost partial vision in her left eye from the virus. She gets rashes from the medication that flare up in the heat. She’s had to explain to her children why she often feels sick (her now 15-year-old son knows that she has AIDS, but the 10-year-old doesn’t).
And then there are the bouts of depression. She figured her dating life ended with her diagnosis. “I thought that once I’m diagnosed nobody would want to be in a relationship with me and all that,” she says. “I thought I really have nothing to live for but my kids.”
Plus, she didn’t know who made her sick. She says that the people she’s slept with have been tested, and all came up negative. “So I don’t have a clue,” she says. “I wonder. Because I’m, like, if they didn’t know, then I can understand. But if they knew and did it purposely, that kind of hurts, you know?”
It’s taken time, a lot of counseling and medication, but after two years she says that her life is getting back on track. She’s down to four pills a day and says there are many days that she feels good. And she’s thrilled to have a love life once again: She met a man on a chat line and recently became engaged.
“All my friends and family are, like, ‘He’s not afraid?’ I say, ‘No, because we use precautions, you know? We’re well aware. I told him beforehand, before we even met face to face. He said he loved me for what I was. It didn’t bother him.”
Joshua Montgomery, Addict Turned Activist
Joshua Montgomery says that in a strange way, HIV saved his life.
Back in 1998, the then-28-year-old lived in San Diego, and his goals went about as far as his next meth fix. “I was a hopeless dope fiend,” he says. “When I found out my status, that got me clean and sober, and I’ve been clean and sober ever since.” Now 42, Montgomery recalls the shame that came with his diagnosis. He was so ashamed, in fact, that it shook him out of his self-centered world of addiction. He vowed to do everything in his power to help others in his situation. He didn’t want anyone to ever feel as low as he felt.
Montgomery’s first step was to go back to school. He enrolled in San Diego City College, where he received his certification in drug and alcohol studies, and he worked in the HIV Case Management/Peer Advocacy Program in the Community Connection Resource Center in San Diego. Montgomery’s advocacy work continued when he moved with his partner to Las Vegas (the two recently split up after 12 years).
Since 2005, Montgomery has worked as an HIV-prevention coordinator at the Gay and Lesbian Community Center of Southern Nevada (a.k.a. The Center), where he also serves as the Vegas “Mpowerment coordinator,” arranging drug- and alcohol-free social gatherings for gay, bisexual and transgender men ages 18 to 29. He oversees an outreach team that visits bars and clubs, passing out safe-sex kits, which contain condoms, lube, HIV testing cards and information about the program.
Montgomery, like other advocates interviewed for this story, is concerned about the blithe attitudes of young people toward the disease. “They’re seeing a lot of longtime people who look healthy, and their motto is, ‘It’s OK, I’ll just pop some pills,” says Montgomery. “Yes, it’s manageable, but it’s also 100 percent preventable.” When Montgomery addresses groups of people, he shows them the 22 pills he takes each day. He tells them that he spends $200 to $300 a month on medicine, while his insurance picks up a much higher tab—up to $6,000. He describes tingling and pain he gets in his hands and feet at night (neuropathy), the high blood pressure he lives with, extreme water retention, chronic diarrhea.
Still, he says, he never lets those symptoms and side effects get the best of him. “I don’t allow myself to be an AIDS victim,” he says. “I’m a person who has a disease, but I don’t let my disease control who I am.” It hasn’t slowed him down. These days, Montgomery is studying social work at UNLV and recently started a relationship with a man who does not have HIV.
Montgomery marvels at the changes he’s seen in the AIDS arena since his diagnosis. But with all the improvements in medication, life span, programs and support, he says something else has been lost.
“I think one of the sad things is nobody talks about it anymore,” he says. “World AIDS Day used to have thousands and thousands come out, and they don’t really do anything any more to represent it. The red ribbon has been replaced with the yellow and pink for soldiers and cancer and so on and so forth. You really rarely will ever see red ribbons.”
Derek Washington, The Political Fighter
In 2006, Derek Washington moved from Los Angeles to Las Vegas looking to extend his career. He was a television producer who, at 42, said he’d “maxed out” his prospects in youth-centric LA and was hoping for a fresh start in Las Vegas. He had money, he had drive, he had confidence. Soon after he moved here, though, he fell sick. He soon learned that he had HIV.
Now 48, Washington looks back on the diagnosis and says he was never surprised.
“I was almost always living on pins and needles, waiting to find out I was positive because I was such the perfect demographic,” he says. “I was the right age, I was the right race [African-American], I was the right behavior [gay].”
He said from the moment he was diagnosed, the sickness just possessed him. He got shingles. He had a stroke. His teeth fell out. He went from living the glamorous life of a TV producer—attending star-studded events—to filling out paperwork to get $400 a month in assistance and medications.
“Psychologically, it’s a huge, huge issue. Not so much the disease, but the red tape that you go through once you have the disease in order to manage the disease,” he says.
He spent months and months on the couch at his mother’s house, too weak to get up for any reason other than to use the bathroom. He wanted to die.
The television was the backdrop to his suffering. He watched as Hillary Clinton announced her candidacy. And then the day of the January 19, 2008, caucuses, he summoned the strength to take a bus and participate.
“My mom was freaked out,” he remembers. “She said, ‘You can’t leave the house!’ Because it was the first time I was going anywhere on my own. I said, ‘No, I’m going to vote for Hillary.’”
Not only did he vote for Clinton, his energy remained high. High enough for him to become a delegate for Clinton at the state convention, and, later, a delegate whip at the Democratic National Convention.
“From that point on, I found a family in the Democratic Party. It kept me going; it gave me things to do,” he says.
Washington became the chairman of Stonewall Democrats of Southern Nevada, which is Nevada’s largest LGBT political organization, where he worked hard to get Sen. Harry Reid re-elected and to get “Don’t Ask, Don’t Tell” repealed. Earlier this year, he became the New Media and Diversity Outreach Consultant at AFAN, where he works to educate the public that HIV and AIDS are not just gay, white-male problems.
Washington says he was never an activist—for anything—before becoming sick. It took HIV to find his calling. While he knows he’ll have to stay on drugs for the rest of his life, he feels good now and is ready to give back.
“I’m out of the danger zone. That doesn’t make you complacent, but it does mean that I’m cool now, and I’m ready to return the favor, pay it forward. I feel like I have to,” he says. “I’m not a religious person, but whatever God had intended for my life, it’s been a pretty cool ride.”
Dispatches from the Front Lines
In Las Vegas, there is a small but tenacious community of professionals who test, counsel, educate and provide assistance to people affected by HIV/AIDS. We spoke with three leaders in this community to find out what issues concern them today.
“My concern is with a lot of the younger people. Now they are looking at HIV as something that happened to the last generation. People like me. A lot of people in their 40s and 50s now are the ones that are HIV positive, for whatever reason. And what I understand is that they think is there’s a cure for HIV now: Yippee, who cares? All I’ve got to do is take a pill for the rest of my life! And that’s really my concern: the complacency people have. They’re complacent about everything, but especially about being HIV positive. They don’t see the consequences. They didn’t see the people that used to come into the office in wheelchairs and blind, because they were severely affected by HIV. They just think you only have HIV if you are not careful, and once you get HIV just go to the doctor and get a pill.”
Antioco Carrillo, Community Counseling Center
Adapting to the changing face of HIV/AIDS:
“Our No. 1 rate is young African-American women ages 15 to 24. That’s where we’re seeing the highest increase. Forty-six percent of our clients are minority. And we’re always looking for ways to continue to diversify our outreach efforts. But we’ve also changed the face of AIDS. We see more women and children. And for a lot of HIV organizations, while we know HIV didn’t discriminate, a huge part of our clientele was gay men. We weren’t necessarily set up as agencies to service children or women. … Five years ago, in our last strategic plan, we went through a whole face-lift of, ‘How does this agency and our programming meet the needs of women and children? Where are we seeing gaps in our services with this population?’ … These are all things that we had to look at during that time. So HIV is really changing.”
– Jennifer Morss, AFAN
Yet, the face of AIDS also remains the same:
“Gay men are still affected. Gay men are the group that’s still rising. That little graph isn’t leveling out. It’s going up. Injectable drug users, that’s leveled out. They really get what clean needles mean and how harm-reduction can really benefit them and has benefited them. When you look at that, it’s kind of interesting.”
– Candice Nichols, Gay & Lesbian Community Center of Southern Nevada