Reigniting The Fight

The 9th Annual AIDS Philanthropy Summit, which took place in September, also marked the 30th anniversary of Funders Concerned About AIDS.

Funders joining together

The funders who convened at the conference, many of whom have been involved in the fight against HIV and AIDS since its earliest days, have collectively born witness to the incredible suffering and unbearable loss that has been experienced over the past three decades. But they have also observed and, often, played a direct role in amazing progress and life-saving achievements.

Recapturing lessons, re-catalyzing resolve, and re-igniting the fight to end AIDS

Over the course of the Summit’s two day agenda, this history was revisited in the hope of recapturing lessons, re-catalyzing resolve, and re-igniting the fight to end AIDS. In fact, “Reigniting the Fight” was the theme chosen for this year’s conference.

In 1983, the first five private foundation grants were awarded

As early as 1983, funders in New York City and San Francisco began meeting to discuss concerns about the growing health crisis among gay men in their cities. Also in 1983, the first five private foundation grants were awarded, totaling $216,000. Later, in 1986, the Robert Wood Johnson Foundation became one of the first private foundations to include an AIDS program in its annual budget.

AIDS begins to come out of the shadows

1987 was a formative year in the fight against HIV and AIDS: the FDA approved AZT as the first available treatment for HIV and AIDS; Randy Shilts published the book And the Band Played On; and Elizabeth Taylor convinced President Reagan to finally talk about AIDS publicly.

FCAA is officially launched

Also in 1987, the funders who had, by that time been, been convening for four years, officially formed Funders Concerned About AIDS.

Finding inspiration in the darkest of times

In 1987, John Barnes was years away from becoming FCAA's Executive Director. At that time, he was the first and only case manager for people living with AIDS in the State of Delaware. Much of his time was spent arranging funerals for people whose families had disowned them. While he watched all of his clients die he struggled to maintain hope. One of his sources of inspiration was a little book of daily affirmations called “The Color of Light.” In this book, he read about an old native North American Indian tradition called Heyoehkah.

People who do things differently

Michael Seltzer, Founding Executive Director (1987-1995); Sunita Viswanath, Executive Director (2005-2009); Richard Turner, Board Chair (1993-1995) and Executive Director (1995-1996); Paul Di Donato, Executive Director (1997-2005)

"The Heyoehkahs, or sacred clowns, were people within the tribe who 'did things differently,' challenged people’s thinking, shook them up. Their function was to keep their people from getting stuck in rigid ways of thinking and living. They were also known as contraries because the lived backwards. They walked backward, danced backward, everything they did was contrary to the norm. By their living, they symbolized the shadow of the Creator God, reminding people of their spiritual center."

A Heyoehkah response to AIDS

Jeanne White accepts FCAA’s Humanitarian Leadership Award

From the beginning, there has always been a Heyoehkah response to AIDS. When the "typical" reaction was fear and panic, there were people dancing backward, responding with love and confidence. When, every day, the world began repeating a death mantra, our sacred clowns danced their dance of life. They talked about living with AIDS, surviving, healing, recovering. When the "normal" reaction to a diagnosis was isolation, our Heyoekhkahs dragged us into a community. When the world wanted us to be victims, they drew circles of light around themselves and stood in their power.

There is always hope

Sheryl Lee Ralph and the Howard University Gospel Choir perform at the Levi Strauss Foundation, EFG and FCAA Global Funders Reception.

Whenever it got dark, they turned toward the light. When people said "There is no hope," they said "There is always hope." When people said. "This isn’t about us," they stood up and said. “This is about you. This is about us all. Our planet is sick. Earth has acquired an immune dysfunction. We are all living with AIDS.”"

We need to dance backward

Materials from FCAA's "If you fund..." campaign.

Today we’re in a very different place in the epidemic. We have the ability to ensure that everyone living with HIV can live a long and healthy life. We can prevent others from becoming infected. But we don’t have the will to scale the response up in order to reach everyone in need. Our leaders want to divert resources from saving lives to building walls. We need to dance backward.

When enough of us dance backward, we can get the world to do the same

Via globalgoals.org

Recently, the Gates Foundation released their first “Goalkeepers Report” to track progress on the Millennium Development Goals. It showed the growth and decline of AIDS deaths per 100,000 population and covered roughly the same period as FCAA's 30 year timeline. It is clear that Institutions like PEPFAR and the Global Fund bent the curve. But it is equally clear that, when enough of us dance backward, we can get the world to do the same. This shows us a potential path forward. Will the progress we’ve made in reducing AIDS deaths continue? Or will we revert back to an uncontrolled pandemic?

Warning signs

Via files.kff.org

This July, the Kaiser Family Foundation reported that donor government funding for HIV in low and middle income countries had fallen by 7%. It is time to dance backward.

Kindling the flames

The presenters and attendees who came together at this year's AIDS Philanthropy Summit included many cherished Heyoekahs. They encouraged us to take inspiration from what we’ve achieved together over the last 30 years. And to kindle the flames to reignite the fight to end AIDS.