This is the final article in a three-part series examining the legacy of HIV/AIDS in Iowa City.
In the early 1980s, Rev. John Harper was a fresh-faced graduate student at the University of Iowa and a semi-active member of the Gay People’s Union.
He’d heard about some disease affecting gay men in New York and San Francisco. He started being more careful, though he doubted whatever it was would spread as far as Iowa.
But by June 1983, Iowa’s first case of HIV/AIDS was reported in Des Moines, and when it finally hit Iowa City, the disease multiplied fast.
“There was a period of time when probably a dozen or more people I knew in Iowa City died pretty quickly,” Harper said.
After a decade of AIDS, Iowa City’s LGBTQ community became more careful, more insular.
“It went underground,” said Harper. “After that numbness wore off, people were watching their backs.”
Tim Budd, manager at Iowa City gay bar 620, left for San Francisco when 620 owner Daryl “Woody” Woodson offered him a plane ticket. He met someone and decided to live there. The gay scene was great, but he had to work a full-time and part-time job to pay the bills.
“San Francisco was sadder. A lot of people were dying by the mid-’90s there. My boyfriend and I used to go to secondhand stores and find the most amazing clothes that you knew were some dead man’s,” Budd said. “When I first moved back in ‘96, a friend of mine passed away from it. The guy who he was dating refused to believe it.”
When Rick Graf, co-founder of Iowa Center for AIDS Resources (ICARE), revealed his HIV diagnosis, it paralyzed the atmosphere. Graf was in a monogamous relationship with his longtime partner, Don Engstrom, and so he didn’t get tested. It wasn’t until a former partner tested positive in 1990 that he decided to double check. The test was positive, and his white blood cell count was low.
Graf revealed the diagnosis at a gay and lesbian rights rally in September 1991, when his condition was quickly becoming visible.
“Instead of fighting for my clients and trying to help them resolve their problems, suddenly, I was fighting for myself, for my own life,” he told the Daily Iowan in 1992. “I just want to live my life with all the joy that I can, whether I have one year to live or 50 years.”
In December 1991, Graf began volunteering in two experimental drug trials in Minneapolis. Harper knows people who survived AIDS because they were smuggled medication from other countries.
Graf wasn’t fond of the University of Iowa Hospitals and Clinics (UIHC), but virology clinic founder Jack Stapleton respected him, despite their arguments. He once listened to Graf scream into the phone for several minutes, and then invited him to air his grievances at a medical conference.
“He was motivated for very good purposes, and sometimes passion shows up that way,” Stapleton said. “He and I kind of grew to a mutual understanding.”
Rick Graf’s final years
Jill Jack, head of the Lesbian Alliance, was close friends with Graf and Engstrom. When Iowa City began its domestic partner registry in November 1994 — becoming the second city in Iowa to recognize same-sex partnerships — Jack and her partner Diana planned to be first in line. But when they arrived, someone had beaten them there.
“Don and Rick were the first ones. And we were number two. We were standing on the line right behind them like, ‘Dammit, we can’t beat you guys out of anything.’ He was a good soul. He was ornery as all get out,” Jack said. “He was a carpenter. So, he could really butch it up if he needed to, but he was a real queen. He looked good in a tutu, and work boots and jeans.”
“He and I used to fight all the time. He was on the Pride committee. Great man, sweet man. He was dying for at least — and he just wouldn’t let up. If he thought he was right, He was gonna hang on to this opinion until you just told him, ‘Rick, stop it!’” she laughed.
“I was with him right before he died,” Jack said. “He just woke up, and I said, ‘Rick, it’s Jill.’ And he said, ‘I was just dreaming about you.’ And I was like, ‘What?’ and he said, ‘I was just dreaming about you. We have to talk. I have some ideas.’ And in my head, I was like, ‘Oh, he’s dreaming about our next Pride rally or something.’ And then he slipped off, and it just really touched me, because that was the last time he spoke to me. And I think he died either that night or the next day.”
Graf was a smaller man, especially when standing next to Engstrom, a “big, robust guy,” Haag remembered. But after getting sick, Graf was “tiny.” Engstrom was afraid of hurting him at night, of rolling over and crushing him. Graf slept on top of him, so they could still have touch. Haag had dinner with Graf one night prior to his death.
“At some point, I just sort of felt like he just wasn’t there for a while. Like left his body for a little while,” she said. “I remember just sort of being struck by that. It started to close in. And he was dead within a year.”
Graf died in his home in the summer of 1995, two years before the highly active antiretroviral therapy (HAART), a three-drug regiment, became the new standard for HIV care. This treatment knocked HIV down to non-detectable levels in the viral blood test.
“I lost — it’s making me tear up — I’ve lost some good friends, and I’ve had some good friends survive it,” Jack said. Her cerulean eyes match her winter hat and mittens. “The drugs are better. Yay for science. That’s what you kept hoping for: Science, please, please come up with something.”
A crisis becomes commonplace
The year 1997 marked the first significant decline in AIDS-related deaths, largely due to HAART. But the treatment didn’t work for everyone. Some patients had multi-drug resistance from decades of violent therapy regimens, Stapleton said. And others couldn’t tolerate the side effects.
The virology clinic received their first Ryan White grant in 1998, which expanded its social support capabilities. The clinic can also provide housing assistance through the Housing Opportunities for Persons With AIDS (HOPWA) program.
As the virology clinic improved and began offering more comprehensive patient care, the AIDS Coalition and ICARE diminished and folded into other more generalized healthcare organizations, like Mecca.
The Affordable Care Act in 2010 drastically increased funding for the clinic, since patients could pay for HIV medicines through insurance, freeing up other funding sources and grants.
Today, it’s “both better and worse,” Stapleton said. In 2007, new integrase inhibitors became the most potent medicine with the fewest side effects. At non-detachable levels, HIV is no longer infectious to other people. The virology clinic has seen 2,619 patients since opening in June of 1988. Last year, it had 750 patients, and around 95 percent of those patients had undetectable viral loads.
The virus has become a chronic disease, instead of a death sentence. But consequently, HIV cases remain high.
“We’ve still got an AIDS pandemic,” Stapleton said. “There are still about a couple million new cases a year globally … There are more people living with HIV in the United States than ever.”
‘What a loss. What a cultural loss.’
Either because of effective treatment, or over a decade of growing fatigue, AIDS faded into the peripheries for some. But for countless others in Iowa City’s LGBTQ community, AIDS never went away.
“For the most part, people have stopped talking about AIDS, kind of stopped thinking about it … People assume even if they do get diagnosed with something, they can live forever on good drugs,” Harper said.
AIDS was an “oh shit” moment, Jack said. Two dear friends of hers died — one early in the crisis, the other after prolonged illness.
“So many people, oh my god. So many people. So many men, so many young men. The depth and wealth of their talents. We all suffer from the loss of them,” Jack said. “Even people that I knew, like this incredible gifted designer. Just what a loss. What a cultural loss.”
Michael Blake, an early member of the UI Gay People’s Union, said his survivor’s guilt has lessened over the years, though he had a “PTSD reaction” when the COVID pandemic began. Because of AIDS, ’90s queer activism assimilated into straight culture, he said.
In the ’70s, for example, gay folks wanted to redefine cultural norms surrounding sex and relationships, many by having multi-partner relationships instead of traditional, monogamous marriage.
“When AIDS came on, there was a lot of finger-pointing at, ‘Well, it’s because you’re promiscuous,’” Blake said. The push for marriage equality was partly a reaction to that.
Women in the ’70s created unions outside of the patriarchal marriage structure, Jack explained. But AIDS “derailed” those ideals, and activism became very linear. After surviving AIDS, they decided to pick a “hard but easy route.”
If there was a silver lining from the AIDS crisis, Jack believes it caused the community to finally coalesce and unite against a common threat.
“I think it brought a sense of self and openness. Like, we’re not really taking anything, because literally they were fighting for their lives … I think [that] gave people the strength to say, ‘Fuck this shit,’ just like Stonewall. I think it brought lesbians and gays closer in that bigger context as well.”
Blake and Haag both echoed that sentiment.
“The men’s and the women’s group came together, because the women really were caregivers,” Blake said. “They didn’t go, ‘We’re lesbians, and gay men are dying, and it’s not our problem.’ I think it did ultimately bring everybody closer.”
That process continued throughout the ’90s, with some resistance. When Haag joined the Pride committee, they discussed including bisexuals in the acronym. The “heated discussion” ended with people walking out of the meeting. And transgender issues started entering the lexicon by the late ’90s, though trans people had existed for decades prior.
The AIDS crisis also sped up the coming-out process, Haag said. Gay men from her hometown returned home with AIDS to live out the remainder of their lives, and their families took care of them.
“If your son had AIDS, you were changed by that,” Haag said.
“Some of them couldn’t go home,” Jack added. “So, the community took care of them, and I have friends who are still alive, which is amazing.”
Assimilating into straight culture
620 closed after the university bought the property in 1998. Budd went to the opening weekend of a new gay bar, Studio 13, then called The Alley Cat, “which is a better name.” An actor at Riverside Theatre in Iowa City, Budd thinks the Studio 13 crowd is younger — or he’s getting older — and more heteronormative than the customers he served at 620.
After returning to Iowa City, Budd began studying theater at UI and working as a bookseller at Prairie Lights. Some gay authors don’t want their novels in the gay section, he said. They want their books in the general section, which surprised him since they fought hard to have gay sections.
“Now it seems gay has become, dare I say, passé. That it’s no big deal. And I’m sure it is if you’re from a small-town Iowa. Like, I haven’t come out to all my family,” Budd said. “But I’ve never wanted to get gay married. I never wanted to have a straight life.”
While mainstreaming LGBTQ culture has undeniably helped secure rights and representation, it also had a downside, Hagg said.
“I just have always felt like Iowa City has been relatively welcoming, compared to a lot of places. And so, the gay culture has not had a unique identity here. I don’t know how people find community now,” she said. “We’ve lost this other thing, this coming together. So, I definitely miss that.”
Modern Pride parades don’t resemble the protests she once attended.
“I’m not sure it’s quite the same. It’s like people are sort of buying Pride versus experiencing it,” she said. “It doesn’t feel as communal to me … It’s just not quite as conducive to building community. It serves community, but it doesn’t serve to build it.”
Jack said LGBTQ people have to balance individuality within the community with broader cohesion — more mosaic than melting pot. She worries that the new generation will repeat the same mistakes amid the current anti-trans cultural panic promoted by conservative media and lawmakers.
“The community is not alarmed enough to react and say, ‘We demand care. We demand knowledge. We demand you to pay attention to this because it could kill us.’ I think young people today are incredibly active, but I don’t want them to reinvent the wheel,” Jack said.
When Michael Blake reflects on the AIDS crisis in Iowa City, he’s proud of the way local LGBTQ locals came together.
“Just going through the files again, it was amazing what we did,” he said.
Many young queer people regard the era as “ancient history,” Jack said. But the communal energy that sparked Stonewall, the first Pride rallies and societal action to combat AIDS is still aspirational.
“I think they hunger for it.”
