Only two AIDS informational and support groups existed in Utah at the beginning of 1986. They were the AIDS Project Utah and the Salt Lake AIDS Foundation. Both were fledgling organizations having been formed independently of each other in the fall of 1985.
The AIDS Project Utah’s Director, Duane Dawson, organized workshops based on the Shanti program which became the organization’s focus. APU hoped to provide in-home and onsite patient “emotional and practical support” for people dying from symptoms associated with AIDS.
In 1986, AIDS activist John Lorenzini joined APU after serving in AIDS organizations in Los Angeles and San Francisco. Lorenzini was also past co-chair of the National Association of People With AIDS for three years. His abilities and knowledge of the politics of AIDS significantly strengthened APU resources.
Before coming to Utah, Lorenzini had chained himself to the doors of the United States DHHS in San Francisco to protest the department not releasing AIDS funds. He acted alone, and arrested while wearing a T-shirt stating “I am a person with AIDS.” His action was the second recorded instance of AIDS civil disobedience, and he was the first AIDS activist arrested for protesting against the government.
Lorenzini and registered nurse, Elizabeth Van Der Burgh, who served on the APU Board of Trustees, began training sessions for the Utah Department of Social Services. Eventually, she trained over 700 department employees. In December 1986, Lorenzini and Van Der Burgh were presented a special award by the Department of Social Services and signed by Governor Norm Bangerter for their AIDS training sessions.
Lorenzini eventually left APU and returned to California where he died in 1990 from symptoms associated with AIDS.
Dawson resigned Aug. 5, 1986, suffering from burn-out. However, he stated: “I think we’ve built up a rapport with the medical community to the point that all newly diagnosed patients are referred to us. So we must be doing something right.”
The Board of Trustees of APU then selected Richard Cochran as its new director. Cochran was the first director of an AIDS service organization in the United States diagnosed with AIDS. APU stated they were sponsoring an “AIDS Awareness Week” for the end of October 1986. Salt Lake Mayor Palmer DePaulis and Utah Governor Norm Bangerter had declared the last week in October as AIDS Awareness Week. Cochran, however, was unaware that the Royal Court had two previous fundraising AIDS Awareness Weeks. His lack of experience with the greater gay community would eventually lead to his resignation.
At the end of September 1986, the Court’s Emperor X, Scott Stites, and Emperor XI, Robb Bullock, hosted the Royal Court’s AIDS Awareness Week and raised nearly $4,600 for AIDS education and services. Nearly all the funds raised to assist people living with AIDS was generated by, or through, the RCGSE.
On Oct. 24, 1986, AIDS Project Utah sponsored — as part of their AIDS Awareness Week — a fundraiser called “That’s What Friends Are For: A Gala Benefit Event”. The benefit was held at [Abravanel] Symphony Hall and featured comedienne Roseanne Barr. She was at the time barely starting out in her career as a stand-up comic known for her Domestic Goddess routine. Barr’s brother Ben was a member of the APU Gala planning committee.
Some 900 people attended the gala; however, Cochran created a faux pas at the end of the program when he expressed his gratitude for this “the first AIDS Awareness Week”. Many in the community took offense at what appeared to be a slight to the Court which eventually caused a rift between it and APU.
After the APU’s gala, Cochran stepped down due to health reasons and the rift in the gay community he inadvertently created. The APU Board of Trustees then appointed former assistant director Ben Barr as Cochran’s successor. Barr’s initial affiliation with the group was as an emotional-support volunteer. Barr immediately began smoothing out hurt feelings and made APU a part of the community and not a separate entity.
The other AIDS organization going through growing pains in 1986 was the Salt Lake AIDS Foundation. Dr. Patty Reagan was the founder of SLAF. She was a popular University of Utah associate professor of health and had returned to Utah in May 1985 from a sabbatical at the UC Berkeley doing post-doctoral work.
The Bay Area was at the hub of the AIDS crisis on the West Coast. Plus, UC Berkeley had a million-dollar grant for AIDS epidemiology study. Upon returning to Utah, Dr. Reagan stated, “My concern coming back to Utah was that no one was doing anything as far as AIDS education. I’ve discovered individuals and groups, a lot within the gay men’s community, are doing everything from collecting money to providing emergency food and housing, to forming AIDS support groups.”
Dr. Reagan said that because of the stigma of AIDS, gay men faced a whole new set of social stresses due to the loss of jobs, loss of housing, and loss of support in and out of the gay community. She stated, “It’s my job as a sex educator to help eliminate or eradicate the AIDS myths.”
Part of what the foundation did was through an AIDS support line providing “accurate health information and referrals”. Previous to the SLAF’s information line, the only resource for AIDS information in Utah was a national 800-number, limited to certain hours of the day.
The AIDS information line originated out of donated space within the Wasatch Women’s Center. Dr. Reagan paid $70 a month to maintain the phone line. Dr. Reagan said regarding the role of women during the AIDS crisis, “Women are at a unique place to turn their energy and personal resources against AIDS.” Additionally, she stated, “Women are playing a special role in the AIDS crisis. Not because we are biologically nurturers, men are that too. Women are the best possible ones physically and emotionally to deal with AIDS. We are at the least risk.”
Funding was an ongoing concern for both APU and SLAF as no financial help was forthcoming from the state. Utah’s Health Department had received a grant of $117,286 from the CDC to develop programs aimed at AIDS prevention. However, Dr. Craig Nichols, the state epidemiologist, refused to print safe-sex guidelines.
He stated, “We will probably cover every area except the Safer Sex area… Most of the material produced is too graphic for a state health department publication.”
Dr. Nichols felt that explicit discussion of the risks of AIDS from sex must come from the gay community itself, saying, “I don’t feel like we bear the total responsibility. And so we’ll do things we know we can do and are acceptable. And other groups will have to fill in where they think there’s a deficit.”
Dr. Reagan argued with Nichols about the lack of funding. She reported to him “how badly we needed the help because the gay community was working hard to help itself.”
“If the gay community can help itself, I don’t see why the health department should be doing anything else,” Dr. Nichols told her.