“We have this misconception that HIV is a chronically manageable disease, a term I don’t like to use,” said Schouten. “One pill a day doesn’t take away the problems of people with HIV.”
The early epicenter of the U.S. AIDS epidemic was white and gay neighborhoods in San Francisco and New York. Today those hardest his are largely black, Latino, poor, often living in rural areas and in the South. If many Americans are lulled into thinking HIV/AIDS has gone away, it’s because the people most affected are largely invisible to them – just like members of the lesbian, gay, bisexual, and transgender community had been at the pandemic’s beginning.
“As HIV becomes more of a disease that affects people of color and people in poverty, even people in the LGBT community have lost focus on HIV as a social justice problem,” said Bertram Johnson, a HANC engagement officer. “[The exhibition] raises awareness of the continued need for research – for an HIV vaccine, for more accessible prevention and treatment, for a cure.”
‘Transfixed by a moment of shared history’
Johnson works for The Legacy Project, a HANC program that bridges gaps between researchers and those affected by HIV, especially African Americans, Latinos, and Native Americans. A theater actor, dancer, and singer, he has long been interested in using the arts as a way to build trust with communities disproportionately affected by HIV/AIDS but not well represented in research clinical trials.
In 2012, he invited Hushka – who has been working on Art AIDS America for the last 10 years – to a meeting of artists, scientists, and activists. Leading up to the exhibit opening, Johnson made presentations to museum staff about ongoing HIV research. HANC Director Schouten helped recruit scientists at the National Institutes of Health to write an introductory essay for the exhibit’s 300-page catalog.
In addition to HANC, Fred Hutch also is home to the federally funded HIV Vaccine Trials Network, which oversees clinical trials in the U.S. and globally, and defeatHIV, one of three federally funded research groups working to develop a cure for HIV. Staff at all three praised the exhibit as a powerful reminder of why their work matters.
“You would have to physically go to Tacoma Art Museum and walk among the 127 pieces of art to understand when I tell you that Art AIDS America is a subtle emotional rollercoaster,” said Michael Louella, who coordinates defeatHIV’s community advisory board. “You will swear you are in a museum one minute, and then the very next you will find yourself transfixed by a moment of shared history.”