People in Seattle and Western Washington responded to the dark days of the early HIV/AIDS crisis, a period that roughly spanned the early 1980s to the mid 1990s, the best way they knew how: by banding together. Amid the grief of losing close to 3,300 people during that time period in King County alone, public health officials became energized, community members mobilized, and organizations arose to combat a swift and deadly disease. Fear raged, victories were notched, controversies erupted. As the twentieth century beckoned and HIV became viewed as a manageable, chronic condition, the region's connection to the broader HIV/AIDS narrative led to national and international achievements. The history of HIV/AIDS in Western Washington, which continues to unfold through the present day, is decades-long and vast, filled with countless players and innumerable events. Comprehending all that occurred grows more challenging as those who survived its losses face their own mortality. Even so, the story of what happened in Seattle and the surrounding area will likely continue to evolve as new efforts have been initiated to gather, memorialize and share that history.
Unusual, unknown, unclear
The history of HIV/AIDS in Western Washington didn't begin in the Evergreen State. Instead, its origins lay in the unexpected medical condition of a handful of patients who lived more than 1,000 miles away.
In the U.S., epidemiological advances and discoveries are tracked by the Centers for Disease Control and Prevention (CDC) in its "Morbidity and Mortality Weekly Report" (MMWR). On June 5, 1981, the MMWR announced that between October 1980 and May 1981, "5 young men, all active homosexuals," had been treated for Pneumocystis carinii pneumonia at Los Angeles-based hospitals. "Two of the patients died" (Gottlieb). The men, from 29 to 36 years old, had never met and didn't share any sexual partners. A "cellular-immune dysfunction" may have been to blame; occurrence of pneumonia in healthy men without any visible clinical immunodeficiency was "unusual."
The finding, which ran 875 words, is the first mention in the medical literature of what would be known as AIDS (CDC). By 2017, more than 70 million people across the globe would contract the virus responsible for AIDS -- and close to half of them would die from infections brought on by HIV (World Health Organization).
A month later, The New York Times reported that an outbreak of a "rare cancer" called Kaposi's sarcoma, which manifested as "one or more violet-colored spots anywhere on the body," had occurred in 41 gay men in New York and California. The cancer was "rapidly fatal" (Altman). Doctors speculated whether "particular viruses or environmental factors" could be the culprits, but as for the outbreak's actual cause? It was "unknown." The Seattle Gay News reported the cause of the cancer remained "unclear" ("Cause of ...").
By the end of 1981, there had been 270 cases in the U.S. of people exhibiting severe immune deficiency; 121 were dead (U.S. Department, 1). Researchers at the CDC were receiving reports of five to six new cases a week. Gay men in large cities -- and at this point, the majority of reported cases involved gay men in metropolitan areas -- were visiting health care providers with complaints of swollen lymph glands, mild fevers, sore throats, fungal infections in the mouth, coughs, and weight loss. Within a year, maybe two, of coming down with the still-unnamed syndrome, the person would likely die.
Dread coursed through gay communities nationwide. But by New Year's Day 1982, some Washingtonians found solace in a macabre realization (Atkins): While medical reports and news stories linked the syndrome to people in New York City or San Francisco or L.A., no reports identified anyone from Seattle. Maybe Washington would be spared.
It was wishful thinking. The virus was already here.
The news broke in late July 1982: The first case of the "deadly infectious disease" had been diagnosed in a man in Seattle, someone who split time between the Emerald City and San Francisco. Another four local cases were suspected (King).
By then the collective suite of infections had an official name: Acquired Immune Deficiency Syndrome, or AIDS. In a sign of how little researchers understood about its transmission, Dr. Hunter Handsfield, director of Harborview Medical Center's sexually transmitted disease control program, said he believed there were probably only a few cases in the city (King).
The lack of knowledge in the medical realm was mirrored in the general public. While some men who visited the volunteer-run Seattle Gay Clinic, located on Capitol Hill in Firehouse Station 7, asked about AIDS, a local internist found many of his gay patients didn't know about the illness. "The level of awareness is different here," said Dr. Tim Smith, "than in larger urban areas where there have been more reports" (Evans, "Local Diagnosis ...").
Later that year, Dr. Robert Wood, a local gay physician with a growing practice, treated a patient: A man, early 30s, originally from Ohio, working for a bank in Honolulu, who, after seeking treatment in San Francisco, sought healthcare in Seattle. "So I took it on, with a little trepidation, and it turned out he was still quick sick," Wood said (Royale interview). The man had Pneumocystis pneumonia, and tests showed his blood contained Mycobacterium avium-intracellulare, a bacterial infection. Together, his infections amounted to a clinical diagnosis of AIDS. After consulting with another physician, Wood hospitalized the man on the 11th floor of the Seattle Public Health Hospital, renamed Pacific Tower (Pacific Hospital). His stay was short, and after his release, he returned to his native Ohio, where he died in 1983 (Royale interview). He's believed to be the second person diagnosed with AIDS in King County (Burak, 1).
With cases both confirmed and suspected, it became unavoidable: AIDS was in the Seattle region. On Dec. 1, 1982, the Seattle Gay Clinic and Seattle Counseling Service for Sexual Minorities hosted the first citywide symposium on AIDS: "Keeping Our Gay Community Healthy: An Open Forum." Held at Seattle Central Community College, some 300 people packed into a classroom to hear the latest data and discuss what the information meant for their lives (Burak, 2). The date of the forum proved auspicious: In 1988, December 1 would be named World AIDS Day.
In April 1983, a man from Tacoma died of complications from AIDS. He was the first AIDS-related death in the region (King, "Tacoman").
"It was pretty scary in those early days," Wood said. "We didn't know how big the iceberg was, but we were seeing only the tip of it in case of AIDS" (Royale interview).
But how do you battle fear? How do you dismantle an iceberg? In Seattle, the answer was to care for those in need. Community members, public officials and activists found unique, and sometimes collaborative, ways to confront the threat of AIDS.
Chicken soup for many souls
Tim Burak was a volunteer at Seattle Gay Clinic, a gay-friendly alternative to the county's STD clinic. Through his role, Burak encountered sick men, some homebound, who needed assistance with chores or transportation to doctor visits. Along with other volunteers in 1983, he helped propose the clinic initiate a "buddy network," a loose affiliation of volunteers to pick up groceries, deliver a meal, or just hang out. Burak even dreamed up a name. "If you're interested in volunteering for the CHICKEN SOUP BRIGADE," a Seattle Gay Clinic announcement proclaimed, "give a call" (King County Archives, 5). Chicken Soup Brigade would eventually be run by Carol Sterling, who exemplified a pattern of lesbians caring for gay men in the midst of a health crisis (Doughton, 16).
Other organizations sprang up. The Northwest AIDS Foundation also began in 1983, with a focus to raise funds for educational campaigns and to offer direct assistance to people as they moved through illness to death; the foundation would eventually combine with Chicken Soup Brigade and Evergreen Wellness Advocates to become Lifelong (Lifelong). The Gay Men's Health Group began in 1983 as well, its name harkening to the Gay Men's Health Crisis, an organization formed in New York City (Burak, 2). Shanti/Seattle provided emotional support to people living with AIDS, its methods based upon the original Shanti group in San Francisco (University of Washington).
As the 1980s progressed and deaths mounted -- by 1985, there had been 74 confirmed deaths in King County (King County Archives, 23) -- more groups with helpful missions took root. Each sought to untangle the crisis from a unique perspective: Lesbians bonded together to form Blood Sisters, a response to regulations barring men who slept with men from donating blood; the local order of the Sisters of Perpetual Indulgence, a drag queen collective that accented its nuns' habits with white-face drag, fought queer stigma and fundraised for AIDS organizations; and the People of Color Against AIDS Network (POCAAN) formed in 1988, one of the country's first AIDS organization's focused on communities of color (Royale interview). It would eventually run a campaign that read, "AIDS is a White Man's Disease," followed by the kicker: "Famous Last Words" (King County Archives, 39).
Dozens of groups emerged in that crucial time. And while they sought to help the growing population of people living with AIDS, public health officials kept busy as well. Often, the roles of each realm meshed. But at times, conflicts arose.
Sickness and health
Awareness about AIDS increased, but in the early 1980s, questions still outnumbered answers. Locals seeking information could call the Seattle-King County Department of Public Health (SKCDPH) AIDS Hotline. Originally staffed by a volunteer, in 1983 SKCDPH created a full-time paid position. It becomes the nation's second funded local AIDS-focused health program, following San Francisco (Burak, 3).
In the spring of 1984, national officials offered a spot of good news: The cause of AIDS has been identified as a retrovirus known as HTLV-3 (it would eventually be renamed HIV, for human immunodeficiency virus). The following year delivered another medical achievement: A blood test to diagnose the virus had been created (Burak, 4).
One requirement faced by patients, organizations and public health departments alike was the need for money. The region's public health department scored a financial victory in 1985 with a grant from the CDC, to become one of the nation's first AIDS Prevention Demonstration Projects (Burak, 5). The next year brought another significant grant, this one for $740,000 from the Robert Wood Johnson Foundation to fund coordination of AIDS services and a long-term-care feasibility study (Robert Wood Johnson).
Victories aside, the local public health department's STD clinic had a strike against it: It was located in the same building as the Seattle Police Department. Groups with troubled histories with police -- from black and brown people to injection drug users, from folks with criminal records to queer people -- felt ill at ease at the prospect of receiving medical treatment in the vicinity of police.
The sentiment had boiled over in the autumn of 1983, when news reports revealed some SPD officers had circulated an "AIDS Alert" list, which contained the unverified names of 10 locals believed to have AIDS. Members of the AIDS Action Committee wrote to Mayor Charles Royer demanding an outside investigation. Health department officials decried the list, fearful the controversy would keep people from seeking medical care (King, "'AIDS Alert'"). It was later revealed the list, identical to one created by employees at Harborview Medical Center, was comprised mostly of people who neither had nor were suspected of having AIDS ("Harborview ...").
Stigma was real, and HIV testing brought the issue to the fore. After the creation of a public health testing project (Seattle City Council Ordinance No. 112260), public health officials encouraged people to get tested. Some locals, in contrast, debated the benefits. After all, with no cure, what difference would it make to know your HIV status (King County Archives, 23)? Compounding that sentiment was concern about the afterlife of test results: What would happen to them? Where would they be kept (King County Archives, 24)?
In 1986, 94 people in King County died of complications from AIDS. In 1988, there were 156 deaths (King County Archives, 34, 44). As deaths increased, so did fear. With doctors and researchers struggling to find solutions -- or even a cure? -- could the state's educators provide assistance? Washington's state legislature supplied an answer.
Nationwide, doctors, public health officials and those treating people living with HIV agreed education was paramount to protecting people from the virus. By the late 1980s, King County residents had already encountered blatant AIDS-based discrimination. In 1985, AIDS advocates and public health officials denounced calls from Jim Wright, a candidate for King County Executive, to quarantine people living with AIDS (Sullivan); state voters denied him the county's highest office after handing him a mere 8 percent of the vote (Gilje). Still more could be done.
In early 1988, the state legislature, acting on recommendations from the Governor's Advisory Council on HIV/AIDS, considered legislation to protect the civil rights of people living with HIV. The proposal also sought to mandate AIDS education in state schools, beginning in the fifth grade, with an emphasis on sexual abstinence (1988 Wash. Laws). To calm potential parental blowback, school districts would make materials available to parents and guardians before AIDS-centered lessons were taught. The state's workforce would also receive education. Known as the AIDS Omnibus Act, it passed the state legislature by one vote (Burak, 9).
Lobbyists who worked on the bill considered it a success (Dziewiontkoski). Viewed by many as the most progressive AIDS-centered legislation during that era, other states used it as a model (King County Archives, 50). Nestled in its 25 pages was a state-assured guarantee that no one would be tested for HIV without consent -- unless, as stipulated in a list of exemptions, the person was convicted of a sex offense. In short order, Washingtonians would witness how the requirement would play out.
On May 31, 1987, Seattle Police arrested 30-year-old Steven Farmer after a 17-year-old male sex worker accused him of rape. During the arrest, police seized a Polaroid camera and a box of photos from Farmer's apartment. The photos, of a 16-year-old and a 17-year-old male, led to charges of "exploitation of a minor," a felony. But when the King County Superior Court ruled the photos and camera had been illegally seized, charges were reduced to a misdemeanor. Farmer, who had recently resigned as an Alaska Airlines steward to use retirement money to pay legal fees, admitted in a plea deal to "communicating with a minor for immoral purposes." Sentencing was set for the end of the year ("Sentence Upheld ...").
As he awaited sentencing, the county prosecutor's office received a tip: An associate and former lover both claimed Farmer was HIV-positive. Prosecutors then received new testimony from two teenage male sex workers, which led to four new charges: two for patronizing juvenile prostitutes, and two for exploitation of a minor. And there was still the original misdemeanor charge to which Farmer had pleaded guilty. For that, he was sentenced to 60 days in jail, slapped with a $980 fine, and handed a year of probation.
Months later, passage of the AIDS Omnibus Act declared sex offenders could be forced to take an HIV test.
Under state law, Farmer's misdemeanor conviction wasn't a sex offense. Neither were the four later charges. Yet when Farmer was found guilty on those four counts, King County Superior Court Judge Charles Johnson ordered Farmer to submit to an HIV test, the results of which would dictate his sentence. Farmer resisted. AIDS advocates protested: The judge's ruling criminalized HIV, they said. No matter. Farmer's positive test result was read in open court. On July 1, 1988, some three months after the AIDS Omnibus Act became law, Farmer was sentenced to 7 1/2 years in prison, longer than the standard sentence ("Sentence Upheld ...").
From that point, little improved for Farmer. His legal appeals to overturn the sentence failed. The Washington State Supreme Court ruled in early 1991 that forcing Farmer to undergo an HIV test had violated his constitutional rights. Regardless, his sentence was upheld (State v. Farmer). He was sent to state prison, where AIDS-related complications took their toll. Gov. Mike Lowry granted Farmer clemency in January 1994, allowing him to enter a hospice in Tacoma, to live out his remaining days (Birkland).
Reaction to Lowry's clemency decision was swift and damning. Farmer was perceived as a sex offender, and offering him hospice, even as a person living with AIDS, struck many as unconscionable (Carlson). But finding a place for anyone to live with, and die from, AIDS had long proved a challenge.
Since the early days of the crisis, people living with AIDS confronted the cold prospect that their illness could lead to homelessness, whether through rejection by family, lovers, or friends, a depletion of finances, or eviction. By 1985, some people with AIDS had endured lengthy hospital stays because they had nowhere to go after release (Taylor). In February 1986, the Seattle City Council attempted to circumvent that possibility: The council allocated $5,400 to cover a year's rent for three rooms in the Morrison Hotel for people living with AIDS. The Seattle Housing Authority oversaw the effort (Seattle City Council Ordinance No. 112673).
Congregants in Seattle's University Unitarian Church had also pondered the housing issue, leading the church to purchase a Capitol Hill house that became the first AIDS housing in the city (University Unitarian Church). But what of long-term hospice care?
In 1991, 321 people died of AIDS-related complications in King County (King County Archives, 60). The ongoing death toll, contextualized with research funded by the public health department's 1986 Robert Wood Johnson Foundation grant, demonstrated the need for AIDS hospice care. Volunteers created AIDS Housing of Washington, and together located a site on a major roadway in Madison Valley (Royale interview). A 35-bed nursing facility was planned. Money was raised. But the project faced a major roadblock: opposition from neighbors (Virginia Mason).
By this point in the AIDS crisis, AIDS activism was an undeniable force, embodied by a group called AIDS Coalition to Unleash Power, or ACT UP, started in New York in March 1987. Regional chapters formed in other cities, including ACT UP Seattle, founded in 1998. Even though its membership was fluid, roughly half of its members were women (Royale interview). It entered the fight to ensure the facility was built.
When community members learned one of numerous developers opposed to the facility sat on the board of the Seattle Art Museum, ACT UP Seattle planned to protest the museum's upcoming gala. Museum staff tried, but failed, to convince activists to cancel their planned action. Instead, the developers caved (Royale interview). The facility was built. Operated by Virginia Mason Hospital, Bailey-Boushay House opened on June 24, 1992. It was the nation's first long-term care facility and outpatient health program for people living with AIDS in the country.
Countless people died in Bailey-Boushay House, including one of King County's most well-known people with AIDS: Steven Farmer. After Gov. Lowry had granted Farmer clemency and he moved a Tacoma hospice, he was an unwelcome presence. Controversy over his residency grew to such a degree, he was transferred to Bailey-Boushay House. Farmer died there in September 1995 (Birkland).
Farmer aside, community members celebrated Bailey-Boushay House, and ACT UP Seattle had demonstrated that action, even the threat of action, could constitute a triumph. Though by that point, ACT UP Seattle had been involved in another win, this time for a different population stigmatized by AIDS: injection drug users.
While gay men were vilified during the early days of the AIDS crisis, people who injected drugs were also demonized. Public health officials knew by the mid 1980s that sharing needles could transmit HIV from one person to the next, but some thought giving injection drug users free needles would only lead to more drug use (King County Archives, 47). For another viewpoint, the U.S. only had to look around the globe.
The world's first needle exchange programs appeared in 1983 in Amsterdam, the Netherlands, a response to local health officials seeking a solution when a pharmacy stopped selling IV drug users sterile needles and syringes (Bassler). Shown to lower HIV rates, legal exchange programs arose in other countries. Not so in the U.S. -- until a Tacoma man named Dave Purchase started a program in August 1998 by placing a folding chair and TV tray close to a house known to draw heroin users (Dave Purchase Project). He exchanged free needles. Soon supported by the Pierce County Health Department, it's considered the first legal and publicly funded needle exchange program in the country.
In folksy tales of a bygone era, neighbors are known to borrow from each other. ACT UP Seattle members heard what Purchase had done in Tacoma and decided to apply similar tactics in the Emerald City. There was one problem: Exchanging used needles for clean ones without a prescription was illegal. To activists, potentially saving lives overrode legality.
In March 1989, ACT UP Seattle set up a needle-exchange table downtown that moved from location to location, not only to offer access to as many injection drug users as possible, but to evade police (Royale interview). Local public health officials knew the exchange program was in full swing, and some had even given it their blessing. Even so, health officials reasoned any needle exchange program should be run by health officials. Within a couple of months, the health department secured county funding and took over the program (King County Archives, 45-6). Within years, local needle exchange annual volume surpassed 500,000 syringes (Burak, 16). ACT UP Seattle had done it again.
An AIDS hospice, a needle exchange program, statewide legislation protecting (most) people living with AIDS: Washington had scored multiple wins. But larger, nationwide victories were on the horizon.
In 1994, researchers announced HIV transmission from mother to infant had been reduced when mothers used AZT (Burak, 16), a controversial drug that local people living with AIDS had tested in early trials (Katz). The same year, Saquinavir, a type of drug known as a protease inhibitor that prevents viral replication, was approved for people living with HIV. Medication, while not always affordable, was available. In 1996, the CDC announced its first decline in AIDS-related deaths since it began gathering data (U.S. Department, 8).
The nationwide epidemic had peaked (King County Archives, 68-70) -- at least for some. AIDS still had its tenterhooks in the lives of women, people of color, and injection drug users (U.S. Department, 8, 9). Globally, HIV/AIDS had become the world's fourth-leading cause of death.
As healthcare disparities became more pressing in multiple communities, Seattle still found itself connected to the larger AIDS narrative. And this time, the news involved that magic word: cure.
Timothy Ray Brown was aware of the battles people living with AIDS could face. Having grown up in and around Seattle, Brown had participated in ACT UP Seattle protests. In the early 1990s, in his mid-20s, he moved to Europe. He was living in Berlin when he tested HIV-positive (Engel).
Brown began taking antiretrovirals, from which he experienced few side effects. For a decade, his health remained stable. But on a trip back to the U.S. in 2006, he began to experience severe exhaustion. Doctors in Berlin informed him he had acute myeloid leukemia, a blood cancer. As he underwent treatment, his oncologist, who knew a rare gene mutation conferred resistance to HIV, suggested Brown undergo a stem-cell transplant from someone with the mutation. Brown passed on the transplant and stuck to chemotherapy.
When the leukemia returned the following year, he opted for the stem-cell transplant. On the day of the procedure, Brown stopped taking his HIV meds. The transplant process was brutal, but he made it through. Three months later, he still hadn't taken any HIV meds -- yet his HIV was undetectable. A recurrence of leukemia led to another stem-cell transplant. Again, there was no sign of HIV. In 2008, researchers announced an anonymous "Berlin patient" had been "cured" of HIV. Two years later, Brown took his story public. He made multiple trips to Seattle, his hometown (Engel). In March 2009, a second person was also deemed cured. Investigators presented details of that case at the Conference on Retroviruses and Opportunistic Infections held in Seattle (Mandavilli).
Pathway to remembrance
By 2018, the AIDS crisis had claimed 8,043 lives in Washington state, and more than 14,000 people in Washington were living with HIV. Roughly 90 percent of those were aware of their status, including in King County, which had achieved a medical milestone known as "90-90-90:" 90 percent of residents knew their status; 90 percent of that group were taking antiretrovirals; and 90 percent of that group had suppressed viral counts. King County was one of the first regions -- if not the first -- in the country to reach that goal (King County).
To commemorate decades of sorrows and successes, a group of volunteers began preliminary work on a project called the AIDS Memorial Pathway, or The AMP. A public-private partnership with a proposed budget of $2.9 million, The AMP will be sited on top of the Capitol Hill light rail station, in a neighborhood whose residents suffered the early impacts of the virus (Doughton, 18). Part of the memorial will occupy the northern end of Cal Anderson Park, named for Washington's first openly gay state legislator, who died in 1995 of complications from AIDS (Kershner). Stories of people reflecting on the impacts of HIV/AIDS were being collected for the memorial, and artwork was being planned. The AMP was projected to be completed in 2020.