‘No one believed that it would ever come to this place’: Fear and hatred clouded efforts to care for Iowa’s early AIDS patients

Jordan Sellergren/Little Village

This is the second article in a three-part series examining the legacy of HIV/AIDS in Iowa City. Read part one here.

It’s October 1980, and Jack Stapleton is treating a 19-year-old girl diagnosed with a rare lung infection: pneumocystis carinii pneumonia.

Stapleton, then an internal medicine intern in Chapel Hill, North Carolina, became interested in infectious diseases while treating her. With infections, if you did the right things, you could make a specific diagnosis and treat that diagnosis, he said. And unlike oncology, you could cure your patients.

But her infections weren’t cured. They diagnosed her with post-chemotherapy myelodysplasia, but they still couldn’t explain these strange opportunistic infections.

“She came back several times with recurrent bad infections and died in the spring of 1981 of AIDS, but AIDS didn’t exist yet,” Stapleton said.

By June 1981, Stapleton began seeing three patients with pneumocystis pneumonia, two who were gay men.

“We couldn’t figure out why they were getting these weird infections,” he said.

Stapleton and the infectious disease staff came to see a patient in the intensive care unit. He was on a ventilator, and a consultant asked him, “Are you homosexual?” The patient nodded his head.

The consultant had just read a recent article in Morbidity and Mortality Weekly Report, detailing pneumocystis pneumonia among five young, gay men in San Francisco, called Gay-Related Immune Deficiency (GRID).

The LGBTQ community in Iowa City wasn’t too concerned about AIDS, said Rev. John Harper, a semi-active member of the Gay People’s Union at the University of Iowa.

“It was essentially a big city disease. It was something that was confined to New York City, San Francisco, Los Angeles, major population areas on both coasts, and not really relevant to us,” Harper said. “No one believed that it would ever come to this place.”

HIV/AIDS was much worse in Chapel Hill, Stapleton explained, because it was more urban and had more people of color, who were disproportionately hit by the disease. But Iowa wasn’t the presumed safe haven.

“When I was recruited here, there was still a lot of denial in Iowa. The health department was saying things like, ‘There’s only 100 or 200 people in the state with HIV,’ and I had 200 people in our clinic at the same time,” said Stapleton, who moved to Iowa City in 1986. “So, it was like, ‘You guys are crazy.’”

Stapleton joined the infectious disease faculty and spearheaded the University of Iowa Hospitals and Clinics’ (UIHC) HIV program. He’d often traveled to Des Moines to talk with medical groups and attend conferences. And as he drove across I-80, the exit signs for tiny towns stuck out to him.

“We had patients from all those towns,” he said. “People in those little towns would have thought it was a big city disease. But I knew that wasn’t true.”

A Sept. 18, 1987 Daily Iowan editorial addressing common misconceptions around HIV/AIDS in Iowa. — University of Iowa Libraries archive

Jill Jack, head of the Lesbian Alliance, remembers seeing a news report about a disease affecting gay men in New York. But she wasn’t too worried.

“At first, I was concerned, but I was in the ‘Huh’ stage,” Jack said. “I had friends who traveled to New York, San Francisco, you know, kinda like, ‘Careful!’ It didn’t take long to have it sink it, like, ‘Oh shit. Yes, it’s affecting gay men, and no one’s doing anything.’”

In September 1982, the CDC first used the term AIDS to describe the disease. But by that point, terms like “gay men’s pneumonia” and “gay cancer” were already shaping public perception.

Laurie Haag remembers hearing about AIDS on an airplane to Los Angeles in 1982 to attend an event for the Equal Rights Amendment. Her friend had a magazine and the cover story was about AIDS.

“That’s the first time I remember understanding how really bad it was. It wasn’t just a thing some gay guys got, you know. It was a crisis. We had just realized that if you got it, you were gonna die,” she said. “Gay culture was really kind of busting out, and when it went up against this AIDS brick wall, it was hard. People just got stopped in their tracks, and the growth of the culture just came to a standstill.”

In the early ‘80s, national rhetoric blamed gay men for contracting HIV, positing that if they weren’t gay, they wouldn’t have developed AIDS.

“I can actually remember a conversation where I overheard my uncle, a former Marine, and my grandmother’s husband talking about it. And one of them was literally saying, ‘If they get it, they get it. It’s their own fault,’” Haag said. “Nobody has dismissed an entire generation of straight men because they smoked themselves to death.”

Protesters in Evansdale, Iowa speak out against plans to build an HIV/AIDS hospice at a time when landlords were denying AIDS patients with impunity. This successful protest was conducted by a neighbor and his family. He later bought the property for use as a rental. March 3, 1990. — Gitone/Wikimedia Commons

How HIV/AIDS kills you

The human immunodeficiency virus renders people unable to fight off infections by attacking the immune system. When someone is first infected, they may not feel sick. At most, they’d notice some flu symptoms. But as the virus spreads and kills white blood cells, common sicknesses last longer and become more frequent.

Left untreated, a person will develop acquired immunodeficiency syndrome, and their body can no longer fight infections. Bacteria, fungi, viruses and parasites — that normally don’t cause infections in healthy people — suddenly lead to recurrent illnesses.

People could develop skin lesions, rashes, fevers, fatigue, sweats, rapid weight loss, lung infections, intestinal infections and even certain cancers like lymphomas, skin cancer and cervical cancer.

“It was kinda like zombies. Like you would see people on the street, and you would know. It was always obvious that some people have it,” Haag described.

When people with AIDS walked into 620, Tim Budd noticed.

“People were getting sick and dying, and there were certainly people who came to the club who you knew were ill. And I would hear about friends getting sicker, and I was surprised that people weren’t being safer,” Budd said. “People fought so hard in the in the late ‘70s and early ‘80s for gay liberation, and for gays to be out and proud, and for them to be visible, and to be treated as equal citizens. And then to fight so hard for that, and to just start dying from telling people to go out and love each other? It was depressing.”

Without treatment, the AIDS survival rate is around three years.

“The shock of each of those losses. Because they came so quickly,” Harper said. “There were instances in which people went from HIV to AIDS, disclosed it to their friends, had not shown any symptoms, and suddenly, they were dead. That was always horrifying and painful.”

In the 42 years since the first official case, there is still no cure.

“My personal pain is we’re a long ways off from a cure, although clearly the hope is that we could cure HIV/AIDS,” said Stapleton, who still runs UIHC’s virology clinic today. “The idea that we’re going to eradicate HIV, a lot of people seem to think we have or are. And that’s just not true.”

If you weren’t political, you became political

Michael Blake, head of GPU, was cognizant of the national news but didn’t really take notice until people got sick. The first people he knew with AIDS were UI music faculty members, like Kerry Grippe who tested positive in 1985.

“Kerry was probably one of my two closest friends that ended up passing away. And it was just really traumatic,” Blake said. “Because it really was a death sentence, and people knew it. I don’t have words [to describe] that panic of getting it.”

Grippe became the subject of two special news features, one in the Des Moines Register and another in The Daily Iowan. He died two years after his diagnosis. His funeral was held at the Unitarian Universalist Church, just above the basements that held GPU-sponsored dances.

“Kerry was a very creative, wonderful man, and obviously he gave a face to the thing,” he said. “It was very secret, you know. Kerry became visible.”

Kerry Gripes appears in a Daily Iowan special issue on the AIDS epidemic in 1987. — University of Iowa Libraries archive

Blake stepped down as head of the Gay People’s Union to chair the health committee, “because it was becoming apparent that the university wasn’t going to do anything.” The LGBTQ community had to prioritize survival, and all else withered by the wayside.

“AIDS changed what our intent was. Back then, we really wanted to create a whole new community. And what happened with AIDS was, it took a lot of that energy away,” Blake said. “We’ve been kind of assimilated into straight culture. Back then there was a whole lot of focus and energy put into designing and defining our own culture, which doesn’t necessarily follow a straight norm.”

The university and the state of Iowa wanted to ignore AIDS and especially gay professors who had died from the virus, Blake said. He worked at the Student Health Center and fought his superiors to include information about AIDS on the brochure rack. The director claimed the information wasn’t “vetted,” but Blake suspects the real reason was social stigma. He also caused a stir when KCRG interviewed him as “Mr. Gay” in front of the Student Health Center, and he criticized the university and the center for not doing their jobs to protect people.

But pockets of campus were supportive. The student government, for example, funded GPU’s health initiatives, like buying 10,000 condoms to distribute across campus. GPU speakers visited rhetoric classes in the English department to talk about HIV/AIDS. They held Saturday workshops with education about supporting people with AIDS.

“We mimic the country in that ignorance is fear,” Blake said. “As more information was discovered, that you could touch people, and they weren’t going to give you cooties, and it just gradually got better.”

Michael Blake as the Condom Queen — courtesy of Michael Blake

GPU taped the workshop and sent DVDs to the rhetoric classes. When Haag moved to Iowa City in 1986 to get a Ph.D. in the Communication Studies department, she watched that AIDS education video. All the incoming freshmen were “very uncomfortable” and didn’t want to talk about the virus, safe sex or sexual orientation.

Those small victories peppered years of inaction at the state and national level.

“Nobody cared. There was no funding. People were dying left and right. Nobody would go visit. It was just horrific. The pandemic is probably the closest thing that I could say it was like, except for the fact that you weren’t ostracized,” Jack said. “If you weren’t political, you became political. Because you had to be.”

The Lesbian Alliance wasn’t as prompt, admittedly, but that too changed.

“Lesbians felt we were safe. Realistically we weren’t, but we were concerned and worried because it was happening in our community. And it took a while for it to come, ‘Oh, you can get it too,’” Jack said.

Harper felt that the local response was much faster in comparison and that the local government and university were “consistently supportive and sympathetic,” though he acknowledged that practically everyone was “late to the game.”

ICARE and the AIDS Coalition of Johnson County

Haag attributes Iowa City’s early AIDS activism to Rick Graf, who co-founded the Iowa Center for AIDS Resources (ICARE) — which still exists today — and also served on the board of the AIDS Coalition of Johnson County. ICARE began in the spring of 1986, and the AIDS Coalition followed soon after in the fall.

“He’s probably the main reason that the community was really well-organized around that issue fairly early on,” Haag said. “He was quite the activist, very beloved. He was both beloved and a pain in the ass, and that it was good that he was both. He was able to use both pieces.”

“We were really good friends,” Blake said. “Sometimes he was too passionate, and when you get in your face, people shut down and don’t listen. So, Rick kind of had that problem sometimes, but I just dealt with it … He was there. Worked up till the end.”

Graf and a few other people met in the kitchen of Mike Miller, an ER nurse, and began planning the initial stages of ICARE. The nonprofit offered case management for patients with AIDS, provided supplies like cane and walkers, helped them with groceries and household chores, and offered counseling and support services.

Harper joined the ICARE board around ‘88 or ‘89. At the time, he led the board of Trinity Episcopal Church downtown. They remodeled the basement and lent the space to three AIDS-related agencies, including ICARE. Harper often counseled people who were HIV-positive.

“It was some of the most excruciatingly painful stuff I ever did,” Harper said. “What do you say to someone who is virtually certain to die? How do you comfort them without giving them false hope that something is coming along to save them? I’ve done this same thing more recently with terminal cancer patients. There just wasn’t a way out.”

Harper helped plan pancake breakfast fundraisers in the Ped Mall. The event started at six o’clock in the morning and lasted until 1 p.m., and would raise between $20,000 and $30,000 annually. Local politicians and elected officials often volunteered to make pancakes, said Haag, who joined ICARE’s board in the early ‘90s.

The AIDS Coalition of Johnson County was a community group with representatives from public and private organizations, like UIHC, Mercy Hospital, Iowa City Free Medical Clinic, Johnson County Public Health, GPU and so on. It focused on providing AIDS education and direct services to AIDS patients.

In its first public newsletter, the organization proclaimed that “the AIDS epidemic is ‘our’ problem, a problem shared by the entire community.” It reaffirmed that AIDS is preventable, that people infected with the virus deserve access to healthcare, to retain their jobs and housing, and to participate freely in the community’s social life, and that AIDS legislation should be guided by scientific facts, not “irrational fears.”

Another AIDS Coalition newsletter from 1987 includes an untitled article from Ozzie F. Díaz-Duque, a translator for the UIHC and later professor in UI’s Spanish and Portuguese department. It memorializes two patients he met at UIHC, who both died from AIDS in 1986.

“I remember Michael’s addition to M&M’s and his ability to make me comfortable with his illness, teaching me not to look at him through his illness but as a person. He died at home, peacefully, away from the artificiality and sterility of a hospital. David died in a hospital, still estranged from his family in Small Town, Iowa,” Díaz-Duque wrote. “I wrote a little about them because they touched my life but mainly because the human side of acquired immune deficiency syndrome gets buried in the statistics, the controversies and the prejudices of society.”

Blake remembers a story about Díaz-Duque. A UIHC patient was dying of AIDS and wanted to see his dog, but staff wouldn’t give permission. Díaz-Duque and a couple other people snuck his dog up the fire escape.

UIHC’s Virology Clinic

Under pressure from GPU and other AIDS-related organizations, UIHC hired “an actual infectious disease specialist” in 1986, according to Blake. The specialist was Jack Stapleton.

After a year of working at UIHC, Stapleton was up to 75 patients by myself. He realized that the hospital needed a multidisciplinary clinic, with services like infectious disease care, testing, social work, nursing, pharmacy support, mental health services and funding or consults for other services like dental care.

They named it the “Virology Clinic” instead of “HIV/AIDS Clinic,” fearing the latter would lead to discrimination towards patients. Stigma around AIDS was common in healthcare settings, he said. He remembered walking with an AIDS patient in the hallways, and people backed against the walls until they passed. Stapleton was confused, but the patient replied, “I get that stuff all the time.”

“Because the primary role of HIV is sexual transmission, it kind of exposed a lot of hypocrisy about sexual orientation. And that’s maybe the thing I learned the most from taking care of people with HIV,” he said. “COVID, being respiratory transmission, has kind of a different level of transmission. That changes the tenor of discussion about it.”

The virology clinic had around 200 active patients and had 70 to 80 new patients each year. And every year, 50 patients would die.

“I came home one night for dinner, and my youngest said, ‘Hey, Dad, you look kind of down. Somebody die again today?’ And like, ‘Well, yeah actually,’” Stapleton said. “We had one patient a week dying of AIDS back in the late ’80s, early ’90s. And that was a toll because I got to know my patients.”

There was no treatment until 1987, he explained. And then there was just one: azidothymidine, or AZT. It had caustic side effects — nausea, vomiting, headaches, muscle pain, fatigue, insomnia, etc. — and cost thousands of dollars annually. But for the few patients who took AZT, it prolonged survival, briefly.

“The virus will become resistant to it very rapidly, usually within a period of months, or even weeks. The benefit would last maybe a year, if you’re lucky two. Then the virus would become resistant, and there weren’t other options,” Stapleton said.

Survivor’s guilt

Tim Budd bounced his hometown of Council Bluffs to the Quad Cities, with frequent trips to Iowa City and Cedar Rapids before landing in London with his boyfriend. AIDS was at a much greater scale there, and he missed his friends here. Iowa City has a way of pulling people back and not letting go, he said. So, he moved back in 1986. His boyfriend followed stateside and tried to persuade him to come back to London, but Budd refused, and they parted ways.

“We would talk on the phone or correspond through letters, and he sent me a letter saying, ‘How’s your health?’ And I’d say, ‘It’s fine.’ And I didn’t understand what he seemed to ask,” Budd said.

He eventually revealed that he was HIV-positive, describing it as “being kicked in the teeth.”

“He wrote me again later saying that if I wanted to see him, I should come one more time. So, my mother game me money for a ticket. I went and saw him, and he was very ill, although it was lovely to see him. It was really taking a toll on him,” Budd said. “My boyfriend died of AIDS, after I came back to Iowa City. So, I was just sort of concerned about my own health for a while. Survivor’s guilt.”

His boyfriend’s sister called him to deliver the news. It was “very upsetting and scary,” and Budd immediately went to the free medical clinic. The nurse brought him into a separate, private room for pre-testing counseling. They drew up his blood to test for HIV antibodies and told him to return in three to four days. When he returned, they brought Budd back into that private room, and he anticipated the worst. The test was negative, but instead of feeling relieved, he felt very, very guilty.

“You just sort of begin to think that if you survived while others died, it seems sort of random. It seems that maybe you have some purpose to be here that you’re not aware of yet. I don’t know,” Budd said. “When I got back from London. I was all about safe sex now. I still am to this day.”

The Cleve Jones’s NAMES Project AIDS Memorial Quilt covered the National Mall at the Second National March on Washington for Lesbian and Gay Rights. Photograph courtesy of Jill Jack.

The politics around AIDS was horrific

Iowa City was immune from homophobic prejudice, with news coverage decidedly “both-sided” on homosexuality, even as thousands died from AIDS.

One issue of The Little Hawk on Oct. 17, 1986 was bluntly called “The Two Sides of Homosexuality,” a two-page spread with the “Views of homosexuals…” on the left, “… and of homophobics” on the right.

In 1989, the Iowa Department of Public Health denied funding for a safe sex workshop for gay and bisexual men sponsored by the AIDS Coalition.

“The politics around AIDS was horrific, horrific,” Jack said. “We were going to help them bring the AIDS quilt, parts of it, and people were protesting. They didn’t want the quilt there.”

The AIDS quilt at the March on Washington stretched from the Lincoln Memorial to the Washington Monument. It took days to read the names of every victim.

“I remember going to the AIDS quilt and that was just kind of overwhelming. And the march itself was overwhelming,” Blake said. “It ended up being a really spiritual thing for me.”

UI student groups brought sections of the quilt with names of Iowa City victims, and it covered the floor of the ballroom at the Iowa Memorial Union (IMU). One conservative protestor, Jeffrey Renander, who edited The Campus Review, held a mock parody of the AIDS quilt, called the gerbil quilt, accusing gay men of inserting gerbils in each other’s rectums.

Renander rented out a glass case at the IMU for the gerbil quilt and protested pride rallies, calling himself an “animal rights activist.” The Dean of Students refused to remove the quilt, claiming it would violate Renander’s free speech. In response, queer-supportive student group rented out the cases every day during Pride Month on the first day reservations were available. Renander also drew attention with a parody cartoon of Bart Simpson holding a slingshot, saying “Back off Faggot!” Matt Groening, the creator of Bart, called the depiction “ugly heartless bigotry.”

Harper thought the faith community was generally supportive in Iowa City, but he remembers sometimes struggling to find people to hold funerals for AIDS victims. Harper has always been churched. At age 10, he knew he was called to the ministry. He drifted away from the church for its stance on civil rights and the Vietnam War. He never lost faith during the AIDS crisis but was often furious at some religious bigotry towards queer people.

“It got me awfully angry, because that’s very non-Christian behavior from people who claim to be Christians,” he said.