When Matthew McConaughey lost 40 pounds to play a man dying of AIDS, in Dallas Buyers Club, he was lauded for his bravery and determination as an actor by Hollywood and the media. After 30 years of collaboration among health advocates, HIV activists and government officials, People Magazine’s Sexiest Man Alive could pull out all the stops and bear down on a gritty story of what happened at the onslaught of the AIDS epidemic. He won an Oscar and the accolades that go along with it.
This year, Hollywood once again, was the center of an HIV-story with two actors pronouncing their true-life diagnosis of HIV. Danny Pintauro, a child-star from the ’90s show Who’s The Boss and bad-boy Charlie Sheen, a member of an acclaimed acting family and star of tabloid headlines for many years, both went “on the air” to declare their status. Unlike the notion of bravery attached by critics, media and the public for McConaughey, this time Pintauro and Sheen were cloaked in sensational headlines and the concept that “promiscuity” and poor “lifestyle choices” were to blame for their health conditions. Pintauro’s fellow child stars on The View asked him if he would “take responsibility” for his “actions” and his “lifestyle.” Fellow actor, Burt Reynolds, minced no words in his incredibly harsh condemnation of Sheen in an interview with a UK television show, saying, “I don't feel bad for him. He's getting what he deserves….He misbehaved badly. Very badly."
Hollywood and the media are not completely to blame for our misconceptions about HIV and AIDS and in many cases, they have elucidated the stories of those affected by the disease. Philadelphia, Angels in America, And the Band Played On and Dallas Buyers Club have brought true stories to life and helped America understand what lies beyond the red ribbon and the campaigns that are mounted on the first day of December each year, on World AIDS Day.
But when it comes to the real people that are living with HIV and AIDS, the Hollywood treatment just doesn’t apply. The stigma of HIV is alive and well in America. People of all races, socioeconomic status and ages, who are diagnosed with HIV face feelings of hopelessness, and fear of rejection from family, friends and community members. Many people avoid even checking on their status, remaining ignorant rather than facing the glare of disgrace so many people still assign to those diagnosed with HIV.
As a filmmaker, this reality became clear to me as I directed a documentary called The Last One about the history of the AIDS Memorial Quilt and its current relevancy today. For people of my generation, the Quilt was both a great tool of communication and community involvement.
When NAMES Project Foundation Founder Cleve Jones started the Quilt in 1987 as the U.S. government turned a blind eye to the devastation AIDS was causing in the gay community, he did so to force Americans to deal with what was happening to his community. The Quilt helped galvanize a nation by naming those lost and giving them an identity that could not be ignored.
In this year’s World AIDS Day proclamation, President Barack Obama said, “HIV still affects specific populations disproportionately across our country. Certain individuals—including gay and bisexual men, Black women and men, Latinos and Latinas, people who inject drugs, transgender women, young people, and people in the Southern United States—are at greater risk for HIV, and we must target our efforts to reduce HIV-related health disparities and focus increased attention on highly vulnerable populations.”
The President’s accurate take on the current state of HIV and AIDS is made more challenging by this sad truth: Aside from those who deal directly with this issue, in America today, HIV has largely slipped from our collective consciousness.
In 2016 we’ll bring our film and displays of the Quilt to hundreds of schools, churches and community centers when we launch our National Youth Outreach Campaign. Young people don’t always fully understand and appreciate the history and severity of HIV. Because strong medications are helping sustain the lives of those living with HIV, youth often have the notion that if you get it you can easily treat it. But they fail to grasp that it’s a long haul that often involves massive doses of drugs and extreme daily diligence to keep track of it all, not to mention the expense.
Through this campaign, we aim to shine a light on the message of the Quilt as it combats stigma and discrimination and offers people living with HIV, support and compassion, rather than condemnation. It is my hope that our documentary will be part of the catalyst that ultimately leads to the “last” panel sewn into its rich fabric.
Nadine C. Licostie is the executive producer and director of "The Last One,” a documentary about the AIDS Memorial Quilt, and a founding principal of Red Thread Productions.