ActionAIDS: A Look Back on 25 Years

We talk to Kevin Burns and Bob Schoenberg about the past and the future of HIV and AIDS

Kevin Burns (courtesy of ActionAIDS)

This weekend (Oct. 22), ActionAIDS commemorates a milestone – 25 years in Philadelphia helping those living with or affected by HIV and AIDS. Since it was founded in 1986, then assisting just 100 people, ActionAIDS has grown to reach more than 5,000, making it one of the largest AIDS organizations of its kind on the East Coast.

As ActionAIDS gets ready for its anniversary gala on Saturday (7 p.m.) we talked to the executive director Kevin Burns and Bob Schoenberg, the first president of the ActionAIDS board and current director of the University of Pennsylvania’s LGBT Center, who will be receiving the Friends for Life award this year. Other award recipients include the Rev. Jim Littrell, the first director of ActionAIDS, and Anna Forbes, the first staff member to ever work with clients.

How did you first become involved with ActionAIDS?

Burns: I first became involved with ActionAIDS as a volunteer buddy when the organization was formed. Prior to 1986, I had lost a number of dear friends to AIDS. I saw my volunteer work as an opportunity to honor the memory of friends I had lost, as well as do something for the LGBT community. The idea that people with HIV/AIDS were being so blatantly discriminated against was maddening for me. I had to do something.

In 1989, I was working as a social worker at a community mental health center that was going through some structural changes. At the same time, ActionAIDS had secured funding to hire additional case managers (social workers). I had been at the mental health center for about 10 years and I thought it would be nice to do what I was doing as a volunteer on a professional level, full time, so I applied and was offered a position. I never intended to stay at ActionAIDS as long as I have, but I was very fortunate that the organization grew as I grew professionally. As a result, I have had the opportunity to move into positions of greater responsibility over the past 22 years. My passion for this work has grown with each passing year. I can’t imagine working anywhere else until HIV is over.

Bob Schoenberg (courtesy of the University of Pennsylvania)

Schoenberg: I had been a volunteer for another local organization doing AIDS-related work since the spring of 1983. A number of volunteers felt the need to provide programs and services which were more client-focused, to increase the attention paid to people living with the illness, thus enhancing the quality of their lives. We decided to start a new organization and, in September 1986, ActionAIDS was born. I was elected to serve as its first board president, a position I held until the middle of 1990. ActionAIDS was created based on a set of operational and ethical principles to which all of the founders agreed – and which are still in place 25 years later.

What’s the most significant accomplishment the organization has made in its 25-year history?

Burns: I believe that our most significant accomplishment is the work we have done with thousands of clients over the years. We came together as a community to fight AIDS. In the beginning, we provided services that helped our clients to access the services they needed and all to often, to die with dignity. Today, thanks to advances in HIV treatment, we have the opportunity to work with clients to be sure they have everything they need to live long productive lives.

I think that our primary goal is to provide high-quality services to the clients who come to us for services. To be sure that we listen to clients and work with them to change as an organization so that we remain responsive to their needs. We are committed to being good partners with other providers, our vendors and the community at large. We strive to be transparent, accountable, accessible and responsive on all levels – to be strong advocates and caregivers.

Schoenberg: Having provided high-quality services for 25 years is itself a significant accomplishment. The organization has changed to suit the times. The number of its long-time employees and volunteers is a testament to the quality of the organization.

What about on a personal level?

Burns: My proudest accomplishment, professionally and personally is the privilege of being executive director of ActionAIDS. I love this organization, our staff, volunteers and clients. I feel very fortunate and blessed to have been able to work at ActionAIDS for the past 22 years.

What are your hopes for the future of ActionAIDS?

Burns: My hope is that we will continue to change and grow as the disease changes. Today, housing is a primary need, especially for people active in addiction and with serious mental health problems. We cannot begin to treat HIV disease, without addressing these co-morbidities. Housing is treatment. Other goals include working to increase access to primary care for people with HIV disease, eliminating waiting times for medical appointments, growing advocacy programs on a state and national level, and increasing our impact on health care reform – specifically, working to help the larger health care system and elected officials see the value of and lessons learned from HIV/AIDS care networks and Ryan White-funded programs. This, I believe, would have a very positive impact on increasing access to health care for poor people across the board.

Schoenberg: Public awareness has increased enormously, treatments have been discovered and promoted, the client population has changed considerably. Though some of the needs clients faced in 1986 remain the same, many are different. All organizations related to HIV/AIDS have had to evolve with social, economic and political realities.

When ActionAIDS was founded in 1986, none of us even remotely thought there would be a need for the organization to exist so far in the future. The fact that I was there at the beginning and contributed to something that has endured and succeeded in so many ways makes me feel proud. I will feel even better when HIV/AIDS is eradicated and organizations like ActionAIDS can close their doors forever.

ActionAIDS 25th Anniversary, Oct. 22, 7 p.m., The Arts Ballroom, 1324 Locust St., 215-981-0088.