by Brian Knowles
Special to the SGN
Flash back to the 1980s when acquired immune deficiency syndrome (AIDS) was considered a death sentence. Treatment options simply did not exist. The Centers for Disease Control and Prevention and other institutions were only beginning to rule out routes of transmission and implement programs to research and track the disease worldwide. The federal government was stuck in a slow vortex, unable to have any sort of impactful immediate response. By the end of 1983, AIDS cases in the U.S. had risen to 3,064 and nearly half of those were lives lost. In 1984, 7,699 cases and 3,665 lives lost. The numbers kept climbing.
Hospitals were on the hook to care for those dying from AIDS, driving up insane daily operational costs that were not sustainable. Advocates, private groups and community members across the country were trying to figure out how to care for these people whose lives were being robbed. In Seattle, it was all about community. Different communities coming together - embracing the creative, vibrant culture this city has always offered.
Of them were Betsy Lieberman and Chris Hurley. Lieberman had a long career as clinic coordinator of the Pike Place Market Community Clinic, where Hurley also worked. In the mid-80s, the clinic started to see an increase in patients with HIV, all with extreme needs - from health care to housing. At this time, home health care didn't want to take these people in. Hospice wasn't as large as it is today, and these individuals found themselves at a loss for resources.
In the late 1980s, The Robert Wood Johnson Foundation took a seat at the table and engaged in this crisis, beginning to evaluate the needs of King County. For nine months, Lieberman sat at that table and one of the group's community recommendations included building a 35-bed skilled nursing facility and day health program. AIDS Housing of Washington was founded in 1988 and the facility they launched would become known as Bailey-Boushay House (BBH), named after Thatcher Bailey, a founding donor, and his partner Frank Boushay who died of AIDS in 1989.
However, the opening of BBH was a rough road. It was contested by the public, resources were scarce, and hospitals were not interested in supporting the effort. While hospitals were the most viable option at the time for caring for those living with AIDS, there was a lot of fear in the medical community - from nurses to doctors - about the unknown. I still remember seeing patients at clinics be completely neglected because staff were afraid of contracting HIV. And there was a lot of fear in the public as well - no one wanted their neighborhood, their restaurants, their laundromats to be infiltrated with the disease. Still, Lieberman and Hurley pressed on. They knew there was a better way; these individuals deserved compassionate care.
Lieberman focused on raising money, working on permits and licenses, while Hurley served as the first executive director building the operations and programming. Virginia Mason Medical Center showed its support when other hospitals bowed out, helping BBH build its vision of creating a 24-hour care residence where people with AIDS could find care and a way to live their last days with dignity.
In 1992, BBH was officially established in the Madison Valley neighborhood of Seattle. It opened with 50 staff, 35 beds and two programs. The neighborhood was still fearful, but thanks to early supporters like Café Flora, BBH was able to build a stable foundation to grow into what it is today.
Since I started as director of the outpatient program in 1992 to now serving as executive director of BBH, I've seen our programming and services evolve just as the disease has evolved from 'fatal' to 'chronic.'
When we opened BBH's doors, death surrounded us. In fact, half of King County residents who have died from HIV/AIDS have died in our building. Every single day was emotionally charged as we navigated our harsh reality. While it was tragic, we found comfort knowing that people were able to live their last days with dignity rather than neglect.
Since those early days and thanks to medical advancements, BBH has grown to offer a range of services focused on helping people live well with HIV/AIDS through outpatient and inpatient programming. Services address the holistic needs of clients, from chemical dependency, to mental illness and depression, to homelessness, incarceration and, of course, other chronic diseases. By creating this foundation of support and trust, we see greater success with treatment and adherence.
A huge area of focus is our Housing Stability Project. Bailey-Boushay House is the only organization of its kind in the U.S. to tackle permanent housing for those who are living with HIV/AIDS and are homeless. Through weekly drop-in classes, BBH meets people where they are in the community (such as shelters) and in-house to provide them the tools and skills to get off the streets, and teach them the basics of taking care of a home.
We've made great strides at BBH over the past 25 years as the nation's first nursing care residence for people living with HIV/AIDS. We have provided a sense of community and care for thousands and thousands of people not just here in Seattle, but across the Pacific Northwest, from Alaska to Idaho. But there is always more we can do to improve the quality of life for people living with AIDS.
On World AIDS Day, it is important to reflect on the history of HIV/AIDS and its impact on our city, our community and its people. This includes acknowledging the tragedies of the past, while also celebrating improvements in the quality of care and the steps that have led us to where we are today and where we're going.
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