Lifelong: Helping People “Live Forward”on February 23rd, 2015 at 6:29 pm
The year was 1987. 16,908 people had already died from AIDS in the United States[i] and the disease was spreading rapidly.
Amidst this backdrop, Pride Foundation distributed our first eight grants to organizations working with the LGBTQ community. Totaling $2,500—with investments ranging from $500 to $1,000—the funds were used for educational materials and to address the widespread impact of the AIDS epidemic on our community.
One of our largest grants that first year went to Northwest AIDS Foundation (now Lifelong) in Seattle to provide emergency care to those dying from AIDS.
Across the country in Chicago, a young lawyer named Ed Wilhoite—now the Chief Executive Officer at Lifelong—was just beginning his engagement with the fight against AIDS. Ed remembers being on a bus one day when ACT-UP/Chicago held a street action that blocked the bus from moving forward.
The group was protesting Chicago Transit Authority’s (CTA) refusal to place safe sex posters on buses, and Ed thought it was a violation of the First Amendment; “Sometimes that’s all it takes. I got off the bus and handed my card to one of the protestors, offering my help.”
Daniel Sotomayor from ACT-UP called him the next day, and Ed was soon deeply engaged in their work.
Ed recalled that they were able to win the fight with CTA, resulting in ACT-UP posters going up on the buses, “no doubt saving people’s lives.”
“For the next couple of years, I worked closely with Daniel on First Amendment issues,” Ed said. “I was his suit, and he changed my life. He was my age, and soon he would pass away from AIDS-related complications. To me, his life (and death) epitomizes both the madness and the measure of AIDS. I also began to work with a group of volunteer attorneys who organized the AIDS Legal Council to meet the unique legal needs of persons with AIDS (loss of job, loss of home, loss of insurance, loss of family, among so much other loss). All of this work intellectualized AIDS for me as an issue of social justice, of health care, and of civic rights.”
In 2001, Northwest AIDS Foundation merged with Chicken Soup Brigade to become Lifelong AIDS Alliance, today known as Lifelong. The organization’s mission is to empower people living with or at risk of HIV/AIDS and/or other chronic conditions to lead healthier lives.
Over the years Lifelong has continued to grow and is currently serving nearly 6,500 clients in Washington annually, with a staff of 125 people. Their current services are robust, serving the full spectrum of needs related to HIV/AIDS, including HIV medical and housing case management, a food and grocery program, nutritional counseling, recovery support services, insurance access, care coordination, and prevention services.
Chicken Soup Brigade, a program of Lifelong, is the only food program in the Pacific Northwest that delivers free, well-balanced meals that are tailored to the specific needs of people with chronic illnesses.
Ed shared that Lifelong is also “a community-based leader in shaping state and federal policy that supports funding for the HIV/AIDS community and advocating for social change.”
In order to understand Lifelong’s current work, it is important to reflect back on how HIV/AIDS has changed over time, and how Lifelong has adapted to this shifting landscape.
In the first ten years of Northwest AIDS Foundation’s existence, its primary focus was on meeting the basic needs of people who were dying from AIDS. This meant supporting clients in their final days at home—ensuring that food, heat, and electricity were available and that people were surrounded by loved ones.
As Ed noted, “AIDS, and the rampant discrimination that followed, struck quickly and fiercely. ‘Get out of our house.’ ‘You’re fired.’ ‘I lost my insurance.’ ‘I have no money for food.’ ‘I am too weak to take care of myself.’ ‘We never want to see you again.’ ‘Don’t touch me.’ These were sometimes dark, difficult days. But as we understood the disease better, we feared less.”
The next phase of Lifelong’s work was focused around access to treatment and keeping those living with HIV/AIDS healthy and alive.
“As the disease changed, so did Lifelong, which increasingly professionalized its staff to manage the growing complexity of living with HIV and AIDS and the additional ailments that came along with the disease,” Ed reflected. “While the majority of Lifelong’s clients were (and remain) gay men, the proportion changed as women, people of color, and youth were disproportionately affected. AIDS was no longer the gay disease it never really was.”
In recent years, Lifelong’s work has shifted yet again, as Ed so eloquently stated, “to help clients build a future, to expect more, to be ambitious. To live forward.”
To Lifelong, that means continuing to take care of people’s basic needs, enhancing peer support services and empowerment, engaging in advocacy and leadership, and working towards developing supportive employment opportunities for those living with HIV/AIDS.
Reducing the disproportionate impact that HIV has on certain populations is an area that Lifelong continues to prioritize. In Washington, gay and bisexual men (GBM) make up approximately 4% of the population, yet comprise nearly 75% of all new or prevalent HIV cases, with those numbers even higher in King County. Within that community, Latino and black GBM are also disproportionately affected by HIV—with rates significantly higher than white GBM.
“Gay and bisexual men adversely affected by stigma, poverty, lack of access to healthy food, unstable housing, mental illness, and substance abuse are at risk of HIV and often do not test early enough, often enough, or at all (and so are diagnosed late),” Ed commented. “When this happens, connecting to medical care and attaining viral suppression is crucial and requires a robust, creative, and resource-intensive approach to HIV prevention, care and treatment.”
Thanks to Lifelong’s well-rounded services, the organization is able to serve as a significant support and educational resource for gay and bisexual men throughout Washington. Yet this is not without challenge. While the Affordable Care Act has had a drastic impact on expanding health care access for people living with chronic conditions, securing continued funding for this work has become increasingly difficult.
“HIV no longer commands the same level of public attention or compels public interest as it did even ten years ago,” Ed stated. “And, for sure, public funding for HIV-related care and support services continues to decline.”
As Lifelong adapts and shifts to meet the changing needs of clients and stay on top of medical advances in the field, the organization hopes to find new ways to integrate their core services and clients into a larger health care delivery system with non-HIV clients.
Providing essential support for vulnerable individuals, with a particular emphasis on access to food, housing, and health, is a critical part of Lifelong’s work moving forward.
And while many living with HIV—and particularly LGBTQ people living with HIV—continue to struggle with isolation, stigma, and barriers to access, overall we have made significant gains in changing public perception and improving people’s quality of life since the mid-1980s.
“The shift has been dramatic,” commented Ed. “Increased public awareness, greater visibility, and openness of people living with HIV really have had (and continue to have) positive effects across society. And the recent understanding of treatment as prevention (TasP) has changed our thinking, our behavior, and our work.”
Lifelong is poised to capitalize on this and will continue expanding upon their decades of experience to find new ways of caring for people, providing services, and collaborating more broadly to fight against illness and poverty.
When Pride Foundation made one of our first grants to Northwest AIDS Foundation in 1987, we never could have imagined the different cycles and adaptations the organization would go through to be where it is today. Those initial grants marked the beginning of Pride Foundation’s commitment to building the infrastructure of organizations working with the LGBTQ community.
For many of our early grantees, it also marked the first time that an organization received foundation support explicitly because of their work with LGBTQ people and families.
“Pride Foundation has been a critical and generous partner, for all of the right reasons, not just of Lifelong, but of HIV-related care and support services throughout the Northwest. We rely on and are grateful for their support,” Ed shared.
As Lifelong’s work continues to deepen and touch our community in new and important ways, we are honored that the organization is a part of our history.
Returning back to what personally connected him to this work so many years ago, Ed reflected; “Daniel, of course, is my 25 year-old story. These men, and many others, who lived in the face of this disease, are an essential part of the man I became. Today, perhaps, the moments of hope and joy are easier, because they are so ordinary. And I don’t think Daniel would have had it any other way.”
“Our [Lifelong’s] work is not done,” Ed mused. “But it is not without hope.”
Zachary Pullin is Pride Foundation’s Communications Manager. Email Zachary.