Looking Back, Looking Forward

When Wendell Hicks got his first test, he was so scared, he secretly crossed state lines for the blood draw and told the clinic his name was Mickey Mouse. He was nervous about the possible results—and fearful someone would find out he was having the test done.

This was 1987, and people were “dying left and right” from a mysterious “gay cancer.” It was a dark time for Hicks, who was just coming out as a gay man himself in the Bible Belt.

“What kind of dirty trick is this?” Hicks remembers thinking. “Oh my God, just when I’m coming to terms with being gay, this is the way it’s gonna be.”

The illness, which sent medical researchers scrambling to identify, label and detect what was causing all this death, had only recently become known as HIV, a virus that causes AIDS.

“It’s kind of traumatic to think about, actually,” Hicks says. “To go back to those days.”

Today, Hicks sits at a table in his office as he recalls when HIV/AIDS was still an enigma. He’s dressed in a pressed shirt and slacks, speaking softly with a slight Texas draw. As the director of Southern Arizona’s AIDS Foundation, he says the reality surrounding the virus now is much different than it was—but there’s still work to be done.

As of 2013, 1,144 people in Pima County are living with the virus.

While medical advances have improved lives, a stigma surrounding the virus persists and there remains a large amount of people in Southern Arizona who aren’t getting the proper care they need. Even more troubling, he says, are the people who don’t know they have it. What might be worse, is a sense that it no longer exists, he adds.

In Pima County, the numbers of prevalent cases have been on an upward trend, but the Arizona Department of Health Services says that’s because those living with HIV/AIDS are living longer. While the number of new cases in the area are involving gay men, a disproportionate amount of the black community is becoming infected.

“The increase in prevalence rates may be due to the efficacy of multi-drug treatments for HIV infection, which have sharply reduced the number of HIV-related deaths,” according to the a Arizona’s annual report on HIV/AIDS.

Minority groups and young gay men represent the bulk of new cases. Officials estimate 10 percent of the black community in Pima County is living with HIV/AIDS.

“Consider the impact of HIV/AIDS within this demographic as only 4 percent of Tucson’s total population identified as black in the 2013 Census,” UAMC clinical program manager Shannon Smith said in an email. Gay men make up nearly 60 percent of the 2,492 cases reported in 2013.

Testing early and often is something SAAF advocates for, but everyone should get tested, Hicks says.

“This is not just a gay disease, the virus does not discriminate and everyone should get tested. Not everyone knows their status. And that’s a key part in stopping transmission,” Hicks says.

One of the primary objectives for SAAF is to provide confidential, convenient testing. Staff regularly hold mobile testing clinics with the health department outside bars along Fourth Avenue on the weekends. Michael Lopez is one of the SAAF staffers who help get this done. On certain nights, he can be seen at places like Venture-In, Tucson’s oldest men’s bar, and advocating safe sex.

The 33-year-old native Tucsonan sports a full, black beard and colorful, geometric tattoos on his arms. He’s talking about just completing a Tough Mudder run as he stands at a table full of condoms and lube.

Behind him is a mobile truck—similar to ones so frequently used to serve Sonoran dogs to the late night crowd, but different. A shiny, clean exterior is well lit, with volunteers visible through a window outside. Instead of drunken eats, there are pamphlets. Curious people walk up, some linger, others just grab the free condoms.

Those interested in getting tested have to sign up. Lopez holds the list with attempts to open up conversation. He’s a fan of saying “eyebrows on fleek” and “bye Felicia.” The light-hearted approach makes something that was once terrifying, tangible. A few sign up.

“I have open conversations with people about sex and how the virus is passed around at these things. It’s very important I take a non-judgmental position that is information-based,” Lopez says. “Others just want to know where the silicone-based lube is.”

Gone are the days of secrecy and shame when it comes to getting tested. Indeed, early detection in Pima County means longer, healthier lives.

In 2013, about 11 percent of the new cases that year were people between the ages of 25 and 29, the majority age group for all new infections. They were all defined as having HIV, not AIDS. That same year in 2013, 17 percent of the people who tested positive had an AIDS diagnosis. They were also between the ages of 40 and 44.

It’s been nearly 30 years since Hicks got that first test. Although he’s negative, he’s sympathetic to the despair a person can feel after the diagnosis. Once someone tests positive in Southern Arizona, SAAF is there for support—something that was not always the case.

The U.S. federal government was slow to respond to the rising number of cases. In 1986, the National Academy of Sciences criticized Congress for not doing enough, calling the outbreak a “national health crisis.” It took another year and over 47,000 domestic infections until President Ronald Reagan publicly addressed the matter in May 1987.

Hicks recalls those days rallying around his sick loved ones despite this. He and friends, some parents and a “whole bunch of lesbians” banded together to volunteer and created food pantries for those afflicted. Across the country, grassroots efforts to comfort the ill rose in the ’80s. Both San Francisco’s Shanti Project and New York’s Gay Mens’ Health Crisis were created in 1982 to provide emotional and practical support.

SAAF’s origins began from these movements. In 1985, it started as the Tucson AIDS Project and later became known as the Shanti Foundation. It then evolved into the People with AIDS Coalition of Tucson. It became officially known as the Southern Arizona AIDS Foundation in 1997. Last year, the organization served 1,177 people living with HIV/AIDS in the county. Dental services, housing, nutrition and medication assistance all made up nearly 66 percent of its $7.4 million budget.

Brian King was an active volunteer for the GMHC in Manhattan. Long before joining SAAF, he was a peer counselor. He had just graduated from the UA in 1982 and moved to the city. He had no idea his building was considered an epicenter of the virus back then.

“I was this promiscuous party boy,” he said. “It didn’t take long.”

King was 22 years old when he was diagnosed with HIV. He remembers being defiant after being told to get his affairs in order.

“I said ‘Fuck you,’ to that doctor and I left and I never went back to him,” King said. He never told anyone until much later, even through the volunteer work. “I lived as if I didn’t have it.”

He says he feels healthy now, but did get really sick in 1994, just two years before a breakthrough medication was approved.

“Thank God for protease inhibitors,” King says. “Everyone stopped dying.” As a peer counselor in 1996, he says SAAF lost three to four clients a month to the disease.

The late ’90s in Pima County did see a decrease in death as a result of the new treatment. Patty McCracken, a registered nurse who worked at University of Arizona Medical Center’s Peterson Clinic, says it even surprised her when she got into the HIV field in 2000.

“I really didn’t want to do death and dying,” she says, recalling getting out of home care at the turn of the century. A Bluetooth headset is wedged in her left ear. She’s wearing a brightly lit scarf as she holds her Starbucks. The congenial woman looks and acts young for her age as she talks about how she usually orders her drink through the app. She’s been a nurse for 49 years.

When she first got the job at an HIV prevention clinic in New Mexico, she had figured the work would entail very sick people close to their end. But by then in that state, she says, the protease inhibitors were cutting death rates in half every year since their inception.

“It’s not about dying anymore. It’s a chronic, manageable disease. Being positive today is just like having diabetes or hypertension,” she says. “We’re not gonna let you die anymore.”

Still, there are those in Pima County with what the health department calls “unmet needs.” These are patients that haven’t had any HIV/AIDS-related treatment. These are people who haven’t had their viral loads checked or are not on antiviral treatment. As of 2012, 59 percent of the county’s HIV positive population met this criteria.

Shannon Smith at the UAMC’s Petersen Clinic says there are many reasons for this, including homelessness, drug addiction and mental illness. Patients who have unmet needs are difficult to treat, she says, because many don’t have a stable place to live, can’t make appointments or, if their medication requires food, plan meals accordingly.

“Pima County has done a good job providing housing for the homeless who have HIV,” she says. Staff and the organizations she works with immediately link up the needy with services. The Petersen Clinic works with COPE and SAAF for this kind of outreach.

Over the past year, Smith and her staff have been pioneering a new program that could potentially end new infections through a controversial practice of using antiretroviral medications to prevent the spread of HIV. It’s called PrEP, or pre-exposure prophylaxis.

Like similar clinics across the country, they’re prescribing Truvada, a once-a-day pill that protects those who take it from becoming infected. Studies on the drug have shown it to be 90 percent effective, but it’s not without critics.

AIDS Healthcare Foundation President Michael Weinstein has called Truvada a “party drug” that encourages risky sex. When developing the PrEP program at the Petersen Clinic, Smith says they took the controversy into account and did some research.

“What we found looking at all the literature was that those in the studies were not more likely to engage in riskier behavior after taking it,” Smith said. “And we agreed our clinic should include PrEP in treatment.”

Right now, the clinic sees 15 HIV-negative people who are taking Truvada as PrEP and continues to get referrals from SAAF. In May, staff from the Petersen Clinic will be holding a meeting with SAAF and COPE employees to discuss the program’s potential at eradicating new HIV infections in Southern Arizona.

The Petersen Clinic’s work is on par with the likes of San Francisco, where the city has implemented “Getting to Zero,” a goal set by public health officials to stop transmission through PrEP. Even New York City’s Mayor Andrew Cuomo has publically announced a benchmark of no new HIV infections by 2020 with the use of this pharmaceutical.

The drug’s efficacy has led health professionals wondering why the demand on refills has been relatively low. An estimated half million Americans are good candidates for the drug, but, according to drug-maker Gilead Sciences Inc., only 3,253 actually filled a prescription in 2012.

Shannon Smith says another obstacle faced in the implementation of PrEP is the ambiguous nature of the medicine. Is it used to prevent or to treat HIV?

“Truvada sits in between,” Smith says, referring to the drug being classified by the CDC as a treatment, not a prevention. Which means federal dollars cannot be spent on prescribing the pill to people who are negative. Another reason cited is the lack of marketing by its producer, Gilead.

Stigma can be another reason—something SAAF health specialist Jai Smith sees working and living in the gay community.

“I’m seeing a lot of stigma towards folks from within the community. Shaming people about the types of sex they choose to have,” he says. “Its an interesting juxtaposition. We should support each other and be our fabulous queer selves, but you shouldn’t be yourself without using a condom.”

Jai Smith says his view on Truvada has since evolved. He views the drug as another tool for people to use to improve their sexual health.

“I see a lot of folks who either know about HIV already and have gotten the whole song and dance about using condoms,” Smith said. “I feel like it’s less about ignorance and knowing what’s available for protection and more about not seeing HIV as something that’s threatening.”

This article appears in Jun 4-10, 2015.