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RGOD2: 25 years ago, Pasadena's AIDS Service Center started with a telephone under the stairs

I visited the AIDS Service Center in Pasadena several months ago with Bishop Christopher Senyonjo of Uganda.

The most poignant moment was seeing 90 satchels lined up against the conference room wall with names of children who would be going to local schools while living with HIV. It was a symbol of how this 25-year-old agency has adapted to serve an eighth of Los Angeles County residents living with HIV.

The new executive director, Anthony Guthmiller, told me how things had changed from the early days with support groups and one full time mental health specialist.

“The professional experience of our counselors is very different because they are dealing with dual and triple diagnoses. People don’t often fully disclose what is going on for them so our counselors have to become basically mind readers,” he said.

Things have certainly changed since I worked there from 1987 to 1990.

This center was the first gay/straight AIDS program created in California; last week, I saw how the local community is still supporting its tireless work during the “Big Week Out” events where hundreds of donors and volunteers organized fundraising parties all over the city. All Saint’s Church will soon be placing a plaque on the closet where the seminal volunteer phone line was actually housed.

Few people actually know the story of the birth of the AIDS Service Center and why it serves a unique role in the range of HIV services today.

Gestation to birth

The gestation period -- from a volunteer staffed telephone under the stairs” to the All Saints AIDS Service Center (ASASC) -- was actually two years from 1985 to 1987. I was director of planning for AIDS Project Los Angeles and charged with creating the first comprehensive prevention and care plan for the city. We spent a year working with diverse small and emerging organizations all over the county and I still own a large crumpled newsprint from my APLA office wall that divided up the regions by agencies. Minority AIDS Project covered South Central, APLA. West LA etc, but the San Gabriel Valley had a big question mark. Nobody was covering this largely suburban and straight area. This newsprint was the seed of the center – a question mark.

In 1986, staff at major hospitals like Huntington Memorial in Pasadena and St. Luke’s Monrovia were leaving food outside patient’s rooms. Good Samaritan Hospital’s board turned down an AIDS training for its surgeons saying this was not the kind of population it wanted to serve. There were extraordinary people within these organizations who protested and won. They brought in training like the use of universal precautions for all staff and patients, but it was a battle against fear and ignorance.

APLA sought partnerships with major health consultant agencies but we were always turned away. The Rev. Malcolm Boyd held AIDS Masses all over the city and attracted major press when people living with the disease or distraught loved ones found comfort in church.

The denial in the LGBT community was also palpable. The board of the Gay and Lesbian Centre was on record and considered itself a gay agency and not an AIDS organization. I negotiated the first HIV testing contract on behalf of the Centre in 1985 and the denial was palpable all around. Except for one board member (David Wexler, who went off to build APLA), most of the board considered HIV someone else’s problem. Most of them would also be dead within three years, including Judge Rand Schrader and Sheldon Andelson.

It was difficult to plan ahead for services and resources when the majority of people -- gay and straight alike -- were having difficulty dealing with reality. Meanwhile, people living with the disease were being kicked out of their homes, losing jobs and insurance, and becoming 20th-century lepers. Something had to be done and the church would play a major role in the development of building a coalition and bringing different professional organizations together. The church also had the moral authority to call for compassion and health service delivery. We used an interfaith panel including Archbishop Roger Mahoney in 1986 to defeat the La Rouche Initiative that was calling for forced testing and quarantining people with HIV in California.

A model agency for California

So the AIDS Service Center came out of two years of research, one was a county AIDS plan for Los Angeles, and in 1986 the Health Policy and Research Foundation asked me to create a plan for a model care center for California. I used a model based on the aging process. HIV speeded up the aging process in the late 1980s and people would die from simple infections with no immunity. Thirty-year-olds would end up looking like old men and women.

Most older people need a case manager to help them through the health care system and various levels of assisted living, depending on their illnesses and mobility. We also had a strong mental health component given the need for peer support groups and identifying early symptoms of HIV infection in the brain. I worked for Bruce Decker, who founded the Health Policy and Research Foundation of California. We had a little office in West Hollywood and David Smith (who went on to become the second-in-command at Human Rights Campaign) was our office manager. We brought Mike Gorman from the Centers for Disease Control in Atlanta to create a five-year AIDS prevention plan for the State of California while I focused on a model care center.

For a year, I would ask the question – “What services would be needed for the future HIV-infected populations in suburban L.A. or rural California as the disease moved away from urban gay males to other populations?” I visited many people and programs throughout the state and we held tons of focus groups.

Containing costs was a huge factor in this puzzle, given a hospital visit would cost $1,000 per day while assisted living facilities and keeping people in home with hospice care was more humane and cost effective. We only had a year to write up these plans and Bruce pulled together an expert team of researchers (like Don Francis who was one of the first to discover the virus) to critique or recommendations.

Sacramento lends support

We had to have political support to make all this happen and worked closely with the Senate Pro Tem’s (David Roberti’s ) office in Sacramento. There was one particular staff member in Sacramento who made all of this happen and it was his last great piece of work. He also died from AIDS. He is still remembered fondly by current staff in the Pro Tem’s office. Bruce died from AIDS-related complications in 1995.

It was an honor to get to know and work beside all these people. We held a big press conference at the release of the 90-page report. It projected numbers, costs and strategies from 1987 to 1991. Here is the official description of our work and you can order a copy online HERE.

Even now, I am not sure how we all made this happen, but we did. Relationships within and between emerging AIDS organizations were fraught with difficulties and the intense fear and homophobia all around this disease gave us all added challenges. Looking back, we all managed to create something wonderful in a sea of chaos and lack of support.

The statewide plan is described below and its main significance was how it both mobilized a variety of sectors including health care providers, the faith community and HIV education strategies and doubled the state’s AIDS funding from $32 million to $64 million.

Name: California War on AIDS - California AIDS Prevention/Treatment Plan 1987/1991

Annotation: This report presents recommendations for preventing and treating AIDS in California from 1987 through 1991, based on analyses conducted by an advisory body created in 1986 at the request of the director of the California Department of Health Services.

Abstract: The group examined the recommendations of the United States Surgeon General and others and received advice from 130 Federal, State, local, corporate, foundation, religious, and community experts on AIDS. The group recommends that the legislature and governor immediately call for a meeting of all possible funding sources. They should also set aside partisan and political considerations and declare a state of emergency to set aside normal budget limits and fund the needed efforts. Additional efforts should focus on expanding long-term strategic planning, preventing a health insurance crisis, increasing funding for clinical drug trials, expanding public health education and risk reduction programs, improving treatment, initiating effective case management, and conducting case monitoring and seroprevalence studies. Tables, figures, and appended charts and related materials.

Will the blueprint for the AIDS Service Center actually work?

I finished working for Bruce soon after the report was launched but wanted to see if the plan would actually work. This was the model that I would convince George Regas, the Rector of All Saints Church, that we needed to put in place in Pasadena to serve the San Gabriel Valley.

I organized an AIDS Mass to be held in late December at All Saints where George would preach. The Gay Men’s Chorus of Los Angeles sang the Lotti Mass in B. The church was packed. Everyone cried, and it was a cathartic experience. The chorus had been decimated by the disease and its director, Jon Bailey, a Methodist minister, provided enormous pastoral and spiritual care to its grieving members. I loved working with the chorus during these years. Another seminal moment. George was moved with compassion and said “Yes, let’s do it.”

George had a heart for social justice issues but was concerned about hiring an openly gay priest to his staff. It took him three months to finally decide and committed $30,000 of parish funds that I was supposed to match within three months. I created the Founders Circle and asked people to give $1,000 each so we could create the AIDS Service Center and hired Connie McCleary, who was leading the volunteer-based support groups already meeting at the church, and an assistant to help me. We had a tiny office at the church overlooking what is now the Doubletree Hotel. I became the center’s first executive director and a title as Associate for AIDS Ministry on the staff of the church.

The help of women’s leadership in Pasadena

Strategically, we not only needed All Saints to provide the moral space and start-up capital, but to break through the Pasadena denial, we needed the women’s community in Pasadena to become our allies. I targeted two organizations to work with us: the YWCA and Women at Work.

We needed a space for the new Center and the YWCA had a small suite available. Lots of former YWCA board members and “little old ladies from Pasadena” advocated on our behalf. Although we were a church based program, we were still seen as a radical organization dealing with a disease no-one owned yet.

Winning hearts and minds

Initially, the YWCA did not want the AIDS Service Center near them and their concerns focused on the shared bathroom space we would use. Fear of contagion was real. We were helped by Women at Work, who also shared the building, and the opening ceremonies were planned for later in 1987. One of the most homophobic L.A. County Supervisors, Mike Antonovich, agreed to be present at the opening and gave us $300,000.

I used the state AIDS plan to develop a model case management system and we won one of 30 national awards from the Robert Wood Johnston Foundation of over $1 million over three years. We were now on the map. By 1988, the process of implementing the California AIDS plan was well underway and we grew from being a volunteer program with a “telephone under the stairs” to having a $1.4 million budget in three years. Growth was painful and exhausting.

The politics of it all were vicious. The loss of beautiful young lives was a constant cloud of grief that hung over every staff member, volunteer and board member and the early years of the center were dark and depressing.

Next week, I will write a second piece acknowledging some of the early founders of the center who gave of themselves, some who are no longer with us and some who are very much alive.

RGOD2, written by the Rev. Canon Albert Ogle of St. Paul’s Cathedral in San Diego, looks at faith and religion from an LGBT point of view. Ogle is known around the world for his work in support of LGBT rights and HIV-prevention efforts. He is president of St. Paul’s Foundation for International Reconciliation. Donations to the foundation can be made by clicking HERE.