Filmmaker Renata Simone, who produced the first national series on HIV in 1989, took three years to produce ENDGAME: AIDS in Black America – a powerful documentary that premieres TONIGHT, Tuesday, July 10 from 9:00 to 11 p.m. ET on PBS (check local listings). Simone set out to explore “one of the country’s most urgent, preventable health crises—uncovering the layered truth about how and why HIV is so much worse in black America and revealing how prejudice, silence and stigma have allowed the virus to spread deep into the black community.”
The heart of the two-hour documentary is the individual stories that illuminate how racism, stigma, ignorance and fear breed new HIV infections – despite the heroic stance of those fighting against the odds to stop the disease from spreading.
But the news out of the documentary – the real revelation 30 years-plus after the CDC first alerted the world to the mysterious illness in June 1981 – is that blacks were among the first 10 people known infected with the disease. That the researchers and the media reported only that gay white men were infected caused the black community (and presumably other people of color communities) to tragically believe HIV/AIDS wouldn’t impact them.
The documentary opens with Phill Wilson talking to an audience at a Black AIDS Institute fundraiser in Hollywood on World AIDS Day:
Today is World AIDS Day and today in America, 152 will become infect with HIV – half of them will be black. Today in Amercia, two-thirds of the new HIV cases among women will be black. Today in America, 70 percent of the new HIV cases among youth, will be black. That is why our resolve to end AIDS must not end tonight.
The narrator transitions to “30 years and three miles from here,” at UCLA with an interview with Dr. Michael Gottlieb, co-author with Dr. Joel Weisman of the first CDC report on five cases of gay white men with a mysterious deadly disease.
Gottlieb told Frontline:
Thirty years ago, I was a junior professor at UCLA teaching immunology and we wanted to have a case to discuss on rounds. So I asked the residents if there was such a case and they came back with our UCLA patient zero, if you will….
This was someone who was previously healthy who all of a sudden had dropped 25 pounds and [looked like] a scarecrow…..
[In] medicine, when we describe a patient, we say ‘This is a 31 year old white, single gay male.’ But in our reports, we said nothing whatsoever about race. It really is an omission on our part.
The first five patients were white. The next two were black. The sixth patient was a Haitian man. The seventh patient was a gay African American man here in Los Angeles. Most of those first patients died within months. We had no information, no treatment. In June of 1981, we’re thinking, ‘Oh, this is something among gay men here in Los Angeles. And yes, some were white and a couple were black. No big deal.
But it was a big deal, says Frontline, since the media played up images of gay white men.
Phill Wilson tells Frontline that he lived in Chicago and had no relationship to Fire Island or West Hollywood. “I thought: Thank God it is them and not us. For once in a lifetime it is about white people and it is not about black people.” Wilson has been HIV positive since the mid-80s.
IF those following the mysterious illness in those very early days – Dr. Gottlieb and others – had made an effort to publicize that blacks were among the first 10 patients who were infected with the then-fatal disease and that it was a sexual disease rather than one related to sexual orientation – would that have prompted black leaders to get involved? Maybe, maybe not. Remember, many gays were too terrified to act in those early days, too. But because the race of the two patients was omitted, it didn’t even cross anyone’s mind.
Civil rights leader Julian Bond says:
“Was it on my radar? I don’t really know if it was something that I felt I didn’t want to get engaged in, or what the reason was. … Well, I feel badly about myself. It’s a bad reflection on me that I didn’t take a more leading role than I did. I could have; I should have. I was in a position of responsibility. I could have done it, and I didn’t.”
And then there was the church. Conservative clergymen like Pastor Michael Jordan helped promote the stigma with a sign outside his church. “The words was very stern,” explains Jordan. “‘AIDS is God’s curse to a homosexual life.’ I think it stinks in the nostrils of God.”
“In the South, in the Black Belt, there’s a great stigma around HIV. People are afraid to eat behind individuals. They don’t want to live next door. We even had people throw out refrigerators and stoves after that person died,” says Mel Prince, who runs the only HIV clinic between Selma, Alabama, and the Mississippi border.
White churches and religious leaders famously failed, too, following the same line that AIDS is God’s punishment for homosexuality. But this documentary isn’t about them – it’s about institutionalized racism always wheezing in the background, weakening America’s immune system.
“The film is about race in America as much as it is about HIV—how a virus has exploited our inability to deal with our problems around race,” filmmaker Renata Simone says in a press release. “In part I hoped to show how the big, abstract social issues come to rest on people every day, in the limited life choices they face. The story of HIV in black America is about the private consequences of the politics of race.”
Among the honest and frank people we meet across the country are basketball star Magic Johnson whose diagnosis stunned and frightened the world; Nel, a 63-year-old grandmother who married a deacon in her church and found his HIV diagnosis tucked into his Bible – a diagnosis he had known about before their marriage; and Jesse for whom gay nightclubs were a culturally safe center to escape the homophobia of church, family and community.
One of the exciting moments in the film is when women learn that medicine is treating them with data gleaned from men. They “act up” and demand research and treatment geared to women’s bodies and experiences. But then, as UCLA sexologist and psychologist Gail Wyatt explains, for women, it’s often still about getting the man: “[Women say], ‘I may have to take some risks to prove to that person that I really care about them, that I trust them and I’m not going to create a lot of drama.’”
The documentary ends in Washington DC where the prevalence of HIV last year was higher than in African nations like Rwanda, Kenya, Ethiopia and the Congo. But Phill Wilson is hopeful: “We’ve been at this for 30 years now. We are at a different point in the evolution of the crisis. We need to be talking about our endgame.”
The documentary will be available on the PBS/Frontline website after it premiers tonight.