Surviving and Thriving

As HIV/AIDS enters its fourth decade, affected Tucsonans have a lot of help and support

Jeffrey Stewart learned he was HIV-positive in 1991. Two years later, his partner died of AIDS—and his whole world fell apart.

Stewart, then living in San Diego, fell into a depression. He spent most of his time in bed, watching TV and rarely leaving his house.

"It was the diagnoses and the loss, but it was also the fear of the unknown," Stewart says.

Stewart eventually got better—but it took almost two decades and a move to Tucson, where he discovered a community of resources and support for people living with HIV/AIDS.

On Thursday, Feb. 23, Stewart stood in front of a full room of Tucson Interfaith HIV/AIDS Network volunteers, care partners and supporters, and was honored for his volunteer work with TIHAN's Poz Café, a project that allows people with HIV/AIDS to go to different area churches for a good meal, good fun and good will.

When Stewart was diagnosed, he had already witnessed dozens of friends die from AIDS since the epidemic started in 1981. When looking back at the tremendous loss today, Stewart and others living with HIV/AIDS all agree that despite the suffering and sadness, they are lucky to still be on the planet, thanks to the development of life-saving drugs.

Stewart says he was amazed at the level of resources available to him. While in San Diego, he received medications and took part in research trials at the University of California at San Diego. When he first moved to Tucson, he went to the Southern Arizona AIDS Foundation and received a referral to the El Rio Community Health Center for his doctor, help with moving expenses, and aid with rent and his utilities.

"At (the El Rio) health clinic, someone kept telling me, 'You need to go to Poz Café,'" Stewart says. "In January of last year, I went to my first café. Even before you walk in, everyone is smiling. It was refreshing, and I said to myself, 'I kind of like this place.' It was very good food, and it's a nice place where you can feel safe."

Beyond the good meal and camaraderie, Stewart says everyone receives a festively decorated grocery bag filled with items that most people on disability are unable to buy with food stamps, such as soap, toilet paper, shampoo, sunscreen and lip balm.

Stewart says the support has helped him blossom. He began volunteering at the café and doing public speaking about living with HIV/AIDS at various TIHAN congregations.

"I knew things were different when this one time, when I spoke to a congregation, I forgot all about living with AIDS, and it ended up all about my animals," says Stewart, who does animal rescue and lives with an assortment of dogs and cats—plus a few goats in the backyard.

When he visited his stepmother and niece last Christmas, he noticed that his stepmother was especially happy. He asked her why she was "so giddy, and she said, 'I can see that you are happy, and that makes me happy.'

"There was a time when I felt a stigma, but that has changed," Stewart says. "I don't feel uncomfortable being out and telling people about AIDS."

Many Tucsonans with AIDS or HIV are not as fortunate as Stewart. Some feel that their entire lives came crashing down when they were diagnosed, and the last thing they want to do is tell people they are HIV-positive.

John is one of those people. He's still able to work and has a good job—but he would never tell anyone at his office that he is HIV-positive.

"When I was first diagnosed, I was so scared. ... It took me a year before I was able to tell my parents," says John, who asked that his last name not be used.

John, who is straight, was diagnosed in 2004. He is not an intravenous drug-user, and he would not have called his behaviors risky. But he was in a short-term relationship, and he had unprotected sex—and that's all it took for him to become HIV-positive.

"My parents were devastated. They didn't really understand how this could happen to someone like me," he says.

He went to see his doctor about what he thought was a venereal disease. The doctor also did an HIV test, and that's how he found out. By then, the relationship had ended, but he did reach out to his ex to let her know.

"I don't know what happened to her, but I wanted to make sure I told her what happened. I wanted to make sure she wasn't going to sleep with someone else," John says. "At that point, I felt like, if anything, that was going to be the one responsible thing I could do out of all this."

For Barb Lock, a straight woman diagnosed as HIV-positive five years ago, it's always a struggle to fight the notion that HIV/AIDS is a gay disease. She wants to help people understand that everyone is susceptible to this virus, especially women.

"The idea that it's a gay disease—well, that hasn't been true in a long time," says Lock, who was infected by her husband.

According to the Arizona Department of Health Service's HIV Epidemiology Program 2011 Annual Report, out of the 2,324 people diagnosed with HIV/AIDS in 2009 and into March 2010, 326 were women. The largest number of those infected remains "men having sex with other men," at 1,424, compared to 226 via heterosexual sex.

According to the Foundation for AIDS Research, in the United States, women account for one in four new HIV diagnoses and deaths caused by AIDS. Diagnoses of women have tripled since 1985; most women contract the virus through heterosexual sex.

Those statistics should be enough to force changes in women's health care and how women are treated when they want to be tested. Lock says her own experience, when she was living in Pinal County, helped her realize something is wrong with the system.

Lock had a hunch that she might be infected, and she went to the county public health clinic to be tested for HIV. A nurse administering the test asked her a series of questions to determine whether she needed the test—and all of the questions involved the use of street drugs, she remembers.

"Have you had 'Special K' recently?" Lock recalls the nurse asking her.

"What? No, I don't eat Special K," Lock says she answered, thinking the nurse was talking about the breakfast cereal. When the nurse realized that Lock didn't have a drug history, she told Lock that she didn't need the test. But Lock insisted, and the nurse finally obliged.

"I knew that I wouldn't get the results right away, and I knew that because it's a public health clinic, they had to tell me in person if I was infected," Lock says. "So when the nurse called and asked me to come in, I knew I had it."

Lock says she was given two choices regarding where she could receive treatment: Phoenix or Tucson. So she moved to Tucson and took advantage of what she considers to be top services and resources; she even discovered help that most people in Tucson's HIV/AIDS community don't know about.

But she also discovered that when it comes to services for women—one of the fastest-emerging groups with HIV/AIDS—there was a lack of support. She knows of only one support group set up specifically for women. It has a core group of six women who meet at the El Rio Community Health Center's Special Immunology Associates Clinic, at 1701 W. St. Mary's Road.

"Yet I know about 50 women in Tucson who have HIV," Lock says. "I want to reach out to more women in Tucson."

A self-described advocate for herself, Lock is working on starting a new organization that will be called PowerSourceTucson. She'd like to see it create a drop-in center for women with HIV and offer more support groups. The goal is "empowering women living with HIV and AIDS," Lock says, adding that she is now recruiting members for the board of directors.

She says more support groups for women are needed, because women face challenges that gay and straight men don't. Lock says that because women tend to have lower incomes, they aren't always able to qualify for better assistance. It's also challenging for many women to find the time for support groups, because they have to juggle work and child care.

What also could be keeping women away, Lock says, is the ongoing stigma of AIDS/HIV. The assumption is that if you're an infected woman, you must be a prostitute or an intravenous drug-user.

Lock says that many infected women who have children never tell their kids.

"Many women don't disclose status, and sometimes, it can feel like a heavy burden," says Lock, who does not have children of her own. But as children get older, Lock says, women are faced with a need to tell, because "mom may not live further than 20 years."

Lock says most women learn they have HIV/AIDS when they are very ill and have to be hospitalized. "Women don't consider themselves at risk, unless they have risky behaviors," she says.

If a woman is married or in a monogamous relationship, a physician would not think of her as exhibiting risky behavior. Lock says that when she went to her doctor for her annual exam, the doctor never offered to test her for HIV/AIDS. It may be time for an HIV test to be part of routine health exams for all women, Lock says.

Despite her wish that more services for women were available in Tucson, Lock says she is grateful for the help she has received here. She says the care she receives at El Rio is exceptional. In Pinal County, where she was diagnosed, there was only one caseworker for the entire county—and the caseworker's office was in Florence.

"El Rio is a model clinic recognized across the country," Lock says, "and as holistic as a clinic can get. I feel very lucky."

Filling the chair next to Jeffrey Scott Brown is a large roll of red felt covered with names hand-drawn in gold and silver. It's the 130-foot-long Tucson AIDS Ribbon.

To Brown, it's a labor of love that he started to remember his Tucson and Los Angeles friends who died from HIV/AIDS. But Brown, who describes himself as the ribbon's caretaker, says he also uses the ribbon to remind people how important it is to protect themselves and to get tested.

"It's important that as long as people keep getting infected, we never forget the loss we've suffered," Brown says. "I'd like to think that reminding people about that loss would help, but people continue to get AIDS."

Brown says that last year, Tucson lost at least eight people in the HIV community—but what's different now compared to when he was diagnosed in 1991 is that people are dying of things like heart failure related to the long-term use of the medications that suppress HIV.

In the era when he was diagnosed, it was often shocking to see how gaunt many people became. "You knew they had AIDS, but nowadays, you can't tell when some is HIV-positive," Brown says. "I do feel lucky, and I know that sounds strange to some people, but I'm here. And after seeing a lot of friends die back then, I am glad to be here.

"We call ourselves poz warriors," Brown says of those who are living with positive HIV tests. "We're in the battle. We're in the trenches."

But don't call him a "survivor." "We are still people infected," he says.

Brown says that in the first decade of AIDS, it created a sound heard around the world: It was the "sound of millions of lives snuffed out during that time from the early 1980s to mid-1990s" before effective drugs finally came along. First, it was AZT that everyone took, but "it rotted people's brains out," Brown recalls. "I couldn't talk in sentences. It was mind-numbing. Now they put small amounts in other drugs, but at a much lower dosage."

While we talk, Brown's cell-phone alarm goes off, and he begins to pull several prescription bottles from his pockets.

"Time to take my morning meds," he says. Four sizable pills are washed down with water. One is a combination of different medications; another pill keeps pneumonia away. One is meant to prevent yeast and fungal infections.

"This is my breakfast," Brown says. "But this is so much better than the 48 pills I used to take." In addition to the pills, Brown says he also takes supplements including collagen, fish oil and vitamin B.

In 2003, Brown moved back home to Tucson from Los Angeles on the day his grandmother celebrated her 100th birthday. He says he wanted to be closer to his family and to get a fresh start in his hometown. He grew up in Winterhaven, the neighborhood known for its over-the-top Christmas displays.

The AIDS ribbon has been a saving grace for Brown, allowing him to recognize the loss of friends and deal with that loss in a way that seems to make sense for him and many others. Tucsonans help him carry the ribbon at special events, including the All Souls Procession and the Pride Parade.

But Brown says it's the resources in the town and the way people with HIV/AIDS have come together to form a community that help him most. Volunteers at clinics and organizations like the Tucson Interfaith HIV/AIDS Network, or TIHAN, and the Southern Arizona AIDS Foundation provide massages and exercise classes. Those organizations are also an excellent source of help for people who run into roadblocks getting treatment. For example, when the state's drug program dropped the ball last year on Brown's prescription for a medication he must take every day, advocates at SAAF stepped in and helped him get the meds.

"All of these people in the HIV community help make living the daily battle easier. If there are any challenges, it's connecting people to all the resources—you have TIHAN, SAAF, the Pima County Health Department, the clinics, and the Pima County HIV/AIDS CARE Consortium," Brown says. "We probably could do a better job of bringing all these resources together" and in "reaching out and connecting up with people in Nogales, Bisbee, Tombstone. There are a lot of people in rural areas that have HIV."

One group in town is focused on creating a sense of community for people with HIV/AIDS; the group also attracts people from rural areas. About six years ago, Carl Stoeckel started BePositiveTucson to help HIV-positive people in Tucson connect socially.

"We felt it would be worth our while to spend our time pleasantly taking field trips, such as hiking or going to view the annual crane migration near Willcox," Stoeckel says. "Not everything appeals to everyone, so we try to keep it as varied as we can. One of the most-successful things we've done is adopted Greasewood Park and worked with Tucson Parks and Recreation to clean it and plant trees."

Stoeckel, who was diagnosed with HIV in the early 1980s, says he had no idea he would still be alive today.

"When I was first diagnosed and moved back to the East Coast, I figured in two years, I'd be dead. But then the medication came, and it literally changed everyone's lives. It provided me with a second chance and a mini-teaching career. I retired, and now I'm happily on Social Security," Stoeckel says, laughing.

There are no dues to pay in BePostive, which has a core group of about 15 participants that attend the monthly hikes and potluck dinners. Stoeckel maintains a Yahoo! group, which is how people join and get information on monthly get-togethers. The gatherings can range from helping Brown with the AIDS ribbon to volunteering with Positively Beautiful, which provides a day of pampering for women with HIV/AIDS.

"We're trying to maintain ourselves as viable, productive individuals. It's very, very hard when you're on disability and have lost everything," Stoeckel says. "Sometimes, people feel they can't provide anything in return, so we're here to say, 'Look, this is what we have to offer and what you can do.'"

There's a tendency in the HIV community to offer support in the form of medications, rent, utilities and food.

But what about fostering "a sense of joy?" Stoeckel asks. "Let's start with that."