For over 22 years, The AIDS Initiative of The Actors Fund has been helping members of the entertainment industry living with HIV/AIDS cope with the extraordinary health care challenges as well as the financial and emotional crises brought on by the disease on both a short and long-term basis. The collaboration between BC/EFA and The Actors Fund’s AIDS Initiative is a model for how an industry can respond effectively and with compassion to the AIDS crisis. The AIDS Initiative provides a full spectrum of essential support services, including emergency financial assistance for basic necessities such as rent and health insurance payments, case management referrals to other sources of community and public assistance, benefits advocacy and counseling and support groups for people with HIV/AIDS, their partners, families and caregivers. Since its inception in 1988, with your extraordinary and continued support, The AIDS Initiative has received over $36 million from Broadway Cares / Equity Fights AIDS (of a grant total of $52 million provided by BC/EFA to The Actors Fund from 1988 to 2009). But how did this all begin? Where did it start?
AIDS, previously known as G.R.I.D. (Gay-related immune deficiency), was first reported by the U.S. Centers for Disease Control on June 5, 1981. The New York Times followed nearly a month later with its first, short article about the disease that appeared under the headline “Rare Cancer Seen in 41 Homosexuals.” By the end of that year, 121 deaths had been documented and by 1987, AIDS had killed over 17,000 people in the United States; over 9,000 in New York City alone. With scientists unable to identify the cause of the disease, let alone any kind of viable treatment, those suffering faced incredible stigma. Ostracism, discrimination and even violence against infected individuals as well as those perceived to be infected was rampant. People with AIDS or displaying symptoms of the disease often lost their jobs and their apartments. Often abandoned by families, shunned by neighbors and with a shamefully dismissive and then ruefully slow response from government and established social service providers, the sick were left with little means of support. People were literally left to die, in understaffed hospital wards or bedridden at home, unwanted and alone.
By 1987 AIDS was having an undeniable effect on the Broadway community. With no respite in sight, Equity Fights AIDS was created by the Actors’ Equity Council in November of that year as one of the nation’s first industry-based AIDS funding efforts.
Colleen Dewhurst, then president of Actors’ Equity Association, had already lost many friends and colleagues to the dreaded disease and was quick to champion the new committee and its determination to do something, anything, to reach out with funds and assistance to sick and dying members of the theatre community. Tom Viola, who would later become executive director of BC/EFA, was Ms. Dewhurst’s assistant. “The committee’s first grassroots efforts, though very small compared to what we do today, would not have happened without her,” he remembers. “Colleen not only dared to speak out publicly when very few would, but her personal enthusiasm and the respect she had long held within the industry created an enduring support that toppled any question as to why the union was bothering with this issue. People who had been desperate to do something rallied together quickly and with great spirit.” As fundraising efforts were planned, it was wisely determined early on that the money raised by Equity Fights AIDS would support the newly created AIDS Initiative of The Actors Fund.
“It was an amazing time,” says Eric Stamm, The AIDS Initiative’s first coordinator from 1988 to 2001. “Equity Fights AIDS provided The Actors Fund with much needed funding to meet the rapid expansion of the program. Simultaneously, Broadway producers created a separate organization, Broadway Cares, which provided grants to organizations in the city and across the country offering services for people with AIDS and their families, including The Actors Fund through its shared fundraising efforts with Equity Fights AIDS. All this happened in about six months. That quickly, we were running The Actors Fund’s first dedicated social service program, The AIDS Initiative.”
He goes on to say, “It was unusual because it was also a kind of huge ‘coming out’ for the Broadway community. Something people just didn’t discuss was suddenly at the forefront of the movement. I’m still impressed with how quickly everyone disregarded any sense of prejudice and did whatever they could to raise money. I learned that there was a difference between ‘cure’ and ‘healing.’ We were able to create a safe, healing environment for people who were dealing with overwhelming challenges, even as in many cases they faced their own eminent deaths.”
The caseload at The AIDS Initiative tripled every six months in those first years with, at the same time, over a third of the program’s clients dying within a year. Elizabeth Avedon, a social worker with The AIDS Initiative for 16 years, explains, “Until the meds (protease inhibitors) came out in ’96, you’d meet a client and wonder how long they were going to live. The main thing was to be as supportive as possible and make their dying as comfortable as possible. In the 1980s, every moment was triage; so many decisions informed by trauma. Our work and the lives of our clients and so many who loved them were filled with unrelenting grief and extraordinary anger.”
Keith McNutt, who joined The Actors Fund in 1995 and is currently the Director of the Western Region, was The AIDS Initiative coordinator from 2001 to 2006. “It’s interesting,” Keith noted. “If you look at the history of The Actors Fund, you see it was created in 1882 largely because show business was considered scandalous and people working in it often couldn’t receive necessary services. Churches would not bury performers in consecrated ground. 100 years later, we were going through the same thing. Bodies were being flown to families who didn’t even know their son was gay, much less sick. Funeral homes often refused services. Families sadly often rejected their sons. An extraordinary circle of lovers, friends, colleagues and activists became family.”
In 1996, the beginning of a breakthrough occurred with the discovery of protease inhibitors. AZT had been prescribed since 1990 but was not effective in many cases and came with a host of dangerous, toxic side effects. However, by late 1997, when the combinations and dosages of the protease regimens were better refined, people started to show vast improvement.
These medications had a significant impact on AIDS Initiative clients as services at The AIDS Initiative shifted from helping people with a fatal disease to assisting those living with a chronic illness. Advances in treatment allowed staff to guide clients toward independence, helping them build skills and learn more about the supportive network that can help them remain highly functioning individuals.
But with medical advances have come new challenges. Kent Curtis, supervisor of The AIDS Initiative since January of 2007, says the most difficult thing about AIDS today is that the disease, its symptoms and treatments are different in each person. “It’s hard to paint a prototype picture because it’s so individual. We have clients who have had serious side-affects to the medications, including bone loss, kidney and liver disease and severe lypodystrophy. At the same time, you have as many who have been HIV positive for 20 years and are symptom-free.”
Yet despite the success of the medications, the case load at The AIDS Initiative has not gone down significantly, remaining at around 450 of the nearly 3,000 clients served by The Actors Fund each year, still the largest case load of any dedicated social service program. There are now two separate populations: the newly diagnosed and long-term survivors. “The good news,” Keith McNutt says, “is that people are surviving and living more normal lives. The bad news is, because it’s not so visibly scary anymore, prevention efforts are faced with a daunting challenge.”
Today AIDS has in many ways gone back underground as it becomes one of a host of social issues such as lack of affordable health care, poverty, addiction, racism and once again stigma. The “face of AIDS” has changed from what was once a majority of white gay men to a significant increase in communities of color and other underserved minorities today. This is not to say that AIDS is no longer an issue among gay men.
Sadly, recent statistics show a rise in new infections both in a younger generation that did not witness the first 20 years of the epidemic and cannot imagine its severity and in an older generation of gay men who, exhausted or burnt out from the years of trauma, unexpectedly face emotional challenges unimagined in those early years that have adversely affected their psychological well-being and sexual behavior.
BC/EFA’s commitment to supporting and funding those essential services remains steadfast.
“Even as we expand BC/EFA’s reach to ensure that the safety net of social services offered by The Actors Fund are available to all in the entertainment industry, our legacy of compassion and commitment is informed by our continued support for The AIDS Initiative,” says BC/EFA’s Executive Director Tom Viola. “For many of us, myself included, memory of those first years propels us forward. It leaves us wanting to do as much as we can for as many as possible in memory of those who died under intensely heartbreaking circumstances and in honor of many more whose efforts addressed those challenges with courage, imagination and heart.”
The history of The AIDS Initiative is one of great achievement in the face of tragedy. Over the past 22 years, it has affected and changed more lives than could ever have been imagined at its inception.
The speed, concern, generosity of spirit and tireless efforts that built The AIDS Initiative and prompted the creation of Broadway Cares / Equity Fights AIDS remain a source of pride to the theatre community.
Even as BC/EFA re-doubles its efforts to secure that the social services offered by The Actors Fund are available to all – we remember the fire of our humble beginnings and still believe in a phrase first coined then:
“What we do together makes a difference.”