This article is part of News is Out’s Caring for Community series, which is focused on the challenges and triumphs of giving and receiving care in the LGBTQ+ community. These stories have been created through a strategic partnership between AARP and News is Out.
When Leslie Ewing walked into Daddy’s, a Castro gay bar, in the mid-1990s during the peak years of the AIDS epidemic in San Francisco, she was nonplussed by a comment she overheard.
“I heard, ‘I smell fish,’” Ewing, a lesbian longtime activist, recalled in a recent phone interview with the Bay Area Reporter. She knew then, she said, that her role was important.
Ewing had gone to Daddy’s in her capacity as president of the board of the AIDS Emergency Fund, a nonprofit founded in 1982 by gay men that provided cash payments to people living with AIDS to help them pay for rent, utilities and other living expenses. She said that she had been good friends with Daddy’s owner, the late Philip Turner, and that the bar was holding a beer bust that day that would benefit AEF. (Turner died in 2001.)
At that time, bars in the Castro and South of Market neighborhoods often held beer benefits for AEF. Neighborhood businesses and bars also had collection jars for the nonprofit’s widely successful penny campaign, which raised funds from people dropping their pennies and other spare change in the jars. The program had a popular tagline, “Every penny counts,” and resulted in over $100,000 being raised over the years, Ewing recalled.
Ewing, now 73, served on the AEF board from 1993-1997 and was the first female board president of the organization, which at that time was mostly run by male volunteers from the gay and leather communities. “I was president for two years,” she said, “because half the board died.”
That was generally the case in those years of the AIDS epidemic when an entire generation of gay men was lost to the disease. It was June 5, 1981, when the federal Centers for Disease Control and Prevention’s Morbidity and Mortality Weekly Report noted five cases of pneumocystis pneumonia among previously healthy gay men in Los Angeles. A second report of PCP and Kaposi sarcoma cases in New York City and California followed a month later. Though it didn’t have a name yet, AIDS engulfed gay males and other communities across the country and around the world.
The disease affected San Francisco like nothing else before. And it wasn’t just in the mostly white LGBTQ Castro neighborhood. People of color and poor people, along with women, hemophiliacs, and people who inject drugs, would also be greatly impacted by the epidemic. But many in the lesbian community stepped up during those years, from leading nonprofit boards to working in the health care field to organizing blood drives so that women could help men and others who were sick and dying. (Gay men had been banned from donating blood due to the AIDS crisis, and the policy was only recently revised to allow men who have sex with men to give blood if they have not had gay sex in the past three months.)
Today, of course, scientific advances have ushered in new antiretroviral medications that can drastically lower the viral load – the amount of HIV in the body – of patients. Undetected = Untransmittable is the phrase used when someone’s viral load is undetectable and they don’t transmit the virus to sexual partners.
Help for the Tenderloin
While San Francisco’s Castro was hard hit by AIDS, so was the Tenderloin and the city’s South of Market neighborhood. Then, as it is now, some of the city’s most vulnerable residents call the areas home.
Val Robb, a lesbian, is a retired HIV nurse whose work included stints with Visiting Nurses and at Zuckerberg San Francisco General Hospital and Trauma Center’s Ward 86. The outpatient HIV/AIDS clinic opened there in 1983 when SFGH became the first hospital in the country to start such a program. In the late 1980s, Robb started working with HIV-positive drug users in the Tenderloin. It was “right before the harm reduction movement took off,” she said in a phone interview. “In the early 1990s, I was doing a lot of training nationally because people didn’t know what to do with drug users who were really sick.”
Robb, 67, also was one of the first nurses to take on providing services at the Ambassador Hotel, a single-room-occupancy facility in the Tenderloin that was leased by a gay man, Hank Wilson. He and his friend, Tom Calvanese, a queer man, turned the hotel into a haven of sorts for those with few options. (Wilson died in 2008.)
“It was a robust program in the Tenderloin for marginally housed sick folks,” Robb recalled, adding that before protease inhibitors, it was mostly hospice care.
In an email, Calvanese, 62, wrote that he was manager at the Ambassador. He described what led to Wilson leasing the hotel.
“I think it’s important to realize that the Ambassador Hotel was a haven for queer, transgender, gay, lesbian, bi, and alternative low-income folks before AIDS came along,” he stated. “So, when HIV/AIDS hit, it hit the Ambassador Hotel hard.
“I recall there being about 15 people living with HIV/AIDS when I started as hotel manager in 1989,” Calvanese added. “Within two years. There were 150, and more arrived continuously. The need was overwhelming and the Ambassador Hotel became the housing of ‘last resort’ for many who had nowhere else to go.”
Calvanese described the effect that lesbian nurses and other professionals during that time as being “beyond measure.”
“Many of those we cared for there were without family and support systems,” he noted. “More often than not, it was fierce lesbians like Val who came on the scene, rolled up their sleeves, and got to work. … More importantly, they came back, day after day, week after week, year after year. Their commitment and their presence made it all possible.”
Today, the Ambassador is operated by the Tenderloin Neighborhood Development Corporation and serves people with extremely low incomes.
Robb said that she and other nurses and social workers developed a clinical program to help people manage pain and their dying process, as well as leveraged services in the hope that similar programs could be created at other locations. The nursing and social work staff had a room where they kept supplies, and Robb said that despite some fear of homophobia on the part of straight clients, that didn’t materialize.
“When I took care of gay men there were high, high levels of appreciation,” she said. “In the Tenderloin, especially as a lesbian, I was nervous at first because there were a lot of straight men, but I found an incredible amount of acceptance and diversity, to my surprise.”
Robb said that she wanted to give a shoutout to lesbian social workers, who often earned less than nurses and worked side by side with them.
Rallying around gay brothers
During the 1980s and early to mid-1990s, many in the lesbian community rallied around their gay brothers, offering support, comfort, and care at a time when many men had been disowned by their families and were dying. Many, like Robb, were nurses. Lesbian nurse Diane Jones retired in 2016 from Ward 86 at SFGH.
In an email, Jones wrote that she began her nursing career on Ward 5B, SFGH’s inpatient AIDS unit. She later moved to Ward 86. In a 2016 B.A.R. article on the occasion of her retirement after working at SFGH for 34 years, Jones didn’t want to talk about those early days, preferring to focus on the importance of removing barriers to health insurance, increasing access to care and advocacy for patients. In the email, Jones wrote that she still felt that way and was “reluctant to do these history pieces.”
San Francisco political activist Martha Knutzen said in a phone interview that it did not surprise her that lesbians in nursing and other health professions rose to the challenges presented by AIDS.
“We shared the same experience and stigma and not getting the right kind of care,” Knutzen, a lesbian, said. “From the very beginning people just saw these needs.”
Knutzen, 66, is retired and currently serves as president of the San Francisco Disability and Aging Services Commission. She emphasized that she was speaking for herself and not the panel.
The AIDS epidemic started to turn with the availability of protease inhibitors in the late 1990s. Today, there are many more medications, including PrEP, which when used as prescribed, is very effective at preventing HIV. But as has been reported in the B.A.R., disparities remain in accessing PrEP, particularly in communities of color.
Knutzen pointed to the late Pat Norman, an African American woman who was the first gay or lesbian employee at the San Francisco Department of Public Health. At DPH, she worked in the Office of Special Problems. During the HIV/AIDS epidemic, Norman was the coordinator for gay and lesbian services at DPH.
“It was important to have that,” Knutzen said of Norman’s presence at DPH. “She did a lot of good by being there at that time.” Norman died in August.
Ewing, who had been involved with old LGBTQ activist groups such as Queer and Present Danger, an affinity group of the AIDS Coalition to Unleash Power, or ACT UP, was reflective of her work with AEF. “You knew you were doing the right thing,” she said. “It was all hands on deck.”
It didn’t start out easy. In 1996, during Ewing’s stint as AEF board president, the late B.A.R. leather columnist Mister Marcus (aka Marcus Hernandez) was critical of her because she did not attend an event at the Eagle, a leather bar. Letters to the editor came in from readers who demanded Marcus apologize. (Hernandez, whom Ewing said never did apologize to her, died in 2009.)
“Mister Marcus has done a dishonor to himself and an extreme disservice to our community by attacking the commitment of Leslie Ewing, president of the board of the AIDS Emergency Fund,” wrote reader Jessea Greenman in the Sept. 19, 1996 issue. “I suggest he apologize graciously, sincerely, publicly, and immediately.”
Gay men with AEF and other organizations who may have had their doubts grew to support Ewing, who went on to work for Under One Roof, an old San Francisco nonprofit that donated proceeds to HIV/AIDS organizations. In 2019, Ewing retired as executive director of the Pacific Center for Human Growth in Berkeley, one of the oldest LGBTQ community centers in the country and the oldest in the Bay Area.
“I wasn’t trying to replace men,” Ewing said of those early days. “I was trying to stop an epidemic. That’s what it was like for me.”
But that didn’t mean that the lesbian community as a whole was on board. Ewing also took some criticism from separatist women, she said. “I do remember getting a fair amount of flak from lesbian separatists for ‘serving’ men rather than ‘lifting’ women – like it was an either-or decision. My response was that we were just trying to stop an epidemic,” Ewing wrote in an email.
Knutzen didn’t see the lesbian separatism issue that way. In her experience, “we were all physically connected. That’s how I remember it. Women, lesbians, feminists, that was my friendship group and we just stepped in and started helping.”
She noted that the Harvey Milk and Alice B. Toklas LGBTQ Democratic clubs, both of which she’s been involved with over the years, were doing AIDS work, or had an AIDS caucus, as did faith communities like Congregation Sha’ar Zahav, the LGBTQ synagogue near the Castro.
“What we were doing in the AIDS caucus – so much of the Democratic [Party] structure blended in with Queer Nation,” Knutzen said, referring to the activist group.
Knutzen came to San Francisco in 1981, three years after the assassination of gay supervisor Harvey Milk and then-mayor George Moscone by disgruntled ex-supervisor Dan White.
“After he was killed, we all understood the political power we had to keep,” Knutzen said, referring to Milk’s death. “Having political power saved our lives and changed health care. It really matters for people to get involved and vote.”
Gay activist Cleve Jones, a co-founder of the NAMES Project AIDS Memorial Quilt who has lived with HIV for many years, said that while people may focus on lesbian separatists, he thought it was a small group. He, too, praised lesbian nurses. “Lots of doctors had a lesbian on staff,” he recalled in a phone interview. (The quilt is now under the stewardship of the National AIDS Memorial Grove in San Francisco.)
Jones, who also co-founded the San Francisco AIDS Foundation, said that at one of the Castro bars he frequented, The Village (later Uncle Bert’s and now The Mix), men and women socialized together. And some lesbians had gay men who shared housing with them. “Lots of women stepped up to take care of their roommates,” he said.
Jones, 68, had nothing but praise for the lesbians who became active during those early AIDS years.
“Most organizations were dominated by men and as the men got sick and died, a whole new generation of leadership emerged with lesbian and straight women in AIDS organizations and the political world,” he said. Quite a few, like Ewing and her late partner, Rebecca Le Pere, who died in 2002, got involved in the AIDS quilt, he said. Le Pere served as managing director for the quilt when it was housed in San Francisco under the NAMES Project. (The quilt later moved to Atlanta, and in 2019, the NAMES Project dissolved and the AIDS grove became its steward. The panels are now housed in a warehouse near the Oakland International Airport when not out on loan or otherwise displayed.)
Le Pere’s death from breast cancer helped inspire AEF to create a separate Breast Cancer Emergency Fund that is still in operation as the Breast and Ovarian Cancer Emergency Fund under the auspices of Bay Area Cancer Connections, according to the website. AEF merged with Positive Resource Center, or PRC, and is now known as Emergency Financial Assistance.
“I’m guessing that through the span of the entire years we lost 20,000 to 25,000 gay men in San Francisco,” said Jones. “Women stepped up in leadership, as volunteers, with meal deliveries. For men in my generation, it still often comes up in conversation and how important it was to support women.”
Jones pointed out that some LGBTQ organizations were already moving to a model of having male and female co-leaders during the early years of the epidemic. “It’s still important,” he said.
Knutzen said that the so-called San Francisco Model that relied heavily on partnerships between LGBTQ and HIV/AIDS organizations, and agencies like DPH, was “so important.”
“It led to so many reforms in health care,” she said, mentioning organizations like the Shanti Project, which pioneered compassionate volunteer-driven services, and Pets Are Wonderful Support, which started in order to provide people living with HIV/AIDS resources to help care for their pets. (PAWS is now part of Shanti.)
Lesbians band together for blood drives
Ewing pointed out that in those days, long before email, cellphones and social media, lesbians didn’t always know what others were doing around AIDS work and helping gay and bi men.
One of those other activities was spearheaded by Lenore Chinn, a lesbian who, at the time, worked in health care at Davies Medical Center in San Francisco and is an artist who now focuses on photography. In the late 1980s, Chinn and other women in the Harvey Milk LGBTQ Democratic Club held an annual blood drive in the Castro. While gay men could not donate blood at the time, many needed blood because of the side effects of AZT, the first medication approved for AIDS, Chinn recalled.
“Many people in the club – guys – died. Many of us were in health care,” Chinn said in a phone interview, referring to the lesbian members of the Milk club.
Called the Women’s Day Blood Drive, it was one day every August at Most Holy Redeemer, the Roman Catholic Church in the Castro. Staff from Irwin Memorial Blood Bank would come and its staff would handle the blood donations. (Irwin Memorial was later known as Blood Centers of the Pacific and is now known as Vitalant.)
The women ran ads in the Bay Area Reporter. “Our boys need blood,” one old ad stated. “Lesbians, help solve an urgent crisis in our community. Stand with our brothers in fighting the AIDS epidemic.” The effort ran from 1985 to the early 1990s, Chinn recalled.
“Jim Rivaldo was a graphic artist and he created ads in the B.A.R. and other papers,” Chinn said, referring to the late gay political consultant who died in 2007 after living with AIDS, hepatitis C and other complications, including liver cancer. Rivaldo was a founder of the Milk club.
At its height, sometimes over 100 people would show up from all community sectors, Chinn recalled. She noted in an old B.A.R. article that 95% of donors were lesbians. She also remembered that the wording on the blood bank’s materials “was poor,” in that people couldn’t donate if they had tattoos unless they were able to verify how they were obtained. “And prostitutes couldn’t donate,” she recalled of how the materials referred to sex workers. “The terminology has changed,” she said.
Chinn, 73, said in addition to the women’s blood donations bolstering local supplies, they helped patients reduce the cost of a pint of blood via credits they could get through an account that the Milk club had set up. At the time, the men would get $20 off and a pint cost $70, she said. A 1988 B.A.R. article noted that the Women’s Day Blood Drive had “issued over 500 credits to people with AIDS and ARC” (AIDS Related Complex).
In 1988 a physician at San Francisco General Hospital threatened a “media war” over the blood drive, claiming that tainted blood was being collected. An article in the B.A.R. at the time stated that Dr. Lorraine Day had taken her claims to media outlets that reported, “gays were giving blood in the Castro.”
That was not the case, but the blood bank relocated the drive to its offices, and Chinn was quoted in the article as stating that blood bank officials were “bending over backward to help us.”
“It became a bone of contention,” Chinn said, adding she and others were angered by the pushback they received and the need to move the blood drive to the blood bank’s offices.
The fight over allowing gay men to donate blood continues today. As the B.A.R. reported last year, in 1983, due to the AIDS epidemic, the federal Food and Drug Administration imposed a lifetime ban on blood donations by men who’d had sex with men since 1977. Under the Obama administration this was changed to a ban on men who’d had sex with a man in the past 12 months; and under the Trump administration amid a blood shortage caused by the COVID-19 pandemic, this period was reduced to three months.
Last year, Vitalant announced a study that sought gay and bi men to challenge the FDA ban.
Brian Custer, Ph.D., a gay man who is a vice president of research and scientific programs at Vitalant, said last year that the blood donation nonprofit is conducting a study in eight cities that will be presented to the FDA in early 2023. Custer said he hopes the study’s results will guide the federal agency to consider changing questions about men who have sex with men specifically to questions about sexual health and safety across all orientations.
Not just in SF
Lesbians were helping gay and bi men outside of San Francisco as well. In 2018, the B.A.R. reported on a film titled “Quiet Heroes” that shined a light on those who treated and cared for people living with AIDS. One of those was Dr. Kristen Ries, a lesbian who in 1981, began treating AIDS patients in conservative Utah. She had admitting privileges at a Catholic hospital, which funded a nurse, Maggie Snyder, to return to school to become a physician assistant. Snyder and Ries eventually became life partners as well as professional ones.
Back in the San Francisco Bay Area, Ewing, the former AEF board president, said that those early years “were all a jumble.”
“In the worst days of the epidemic, we were swimming in deep waters of our own,” she said. “The community was a lot different.”
Cynthia Laird is news editor of the Bay Area Reporter.