In Haiti, Venise Louis' relatives refused to let the orphaned girl attend school or eat with the rest of the family once she was diagnosed as HIV positive.
In Cambodia, Uch Navy's husband committed suicide and left her infected with the disease that had brought on his despair. Instead of offering condolences, neighboring villagers set her house on fire -- driving off the widow and her young son.
In Nigeria, which imposed a harsh anti-gay law in January, Ifeanyi Orazulike has risked beatings and imprisonment to deliver healthcare information and condoms to other homosexual men. Fear of attacks or arrest deters people from seeking care, says the worried gay rights activist, who's not infected. "I feel discouraged."
Theirs are among the stories chronicled in "AIDS: Living in the Shadows," a new Voice of America documentary on the stigma attached to those with acquired immunodeficiency syndrome or the virus that causes it.
Since its emergence in 1981, HIV/AIDS-related illness has killed tens of millions. Antiretroviral drugs and guidance on healthful behaviors have extended chances that the world's 35 million people now infected with HIV can lead full, productive lives if they can access care.
"I believe AIDS can be beaten ... but only by eradicating its most deadly symptom: stigma," Sir Elton John, the rock star and longtime AIDS activist, says at the start of the documentary. It will premiere July 22 at the 20th International AIDS Conference in Melbourne, Australia, and will be streamed online on VOANews.com.
Stigma leads potentially infected people to delay vital HIV testing and treatment. It prompts them to hide diagnoses – fearing discrimination, ostracism or violence – and put themselves and others at risk. Unchecked, the disease can devastate families, communities, whole societies.
"You've just got to get people to understand ... the bad guy is the virus, the bad guy is not the person," says Anthony Fauci, a leading AIDS expert and director of the United States' National Institute of Allergy and Infectious Diseases. "This is a public health issue, not a moral issue."
A costly toll
The pandemic claims 2.3 million new infections and 1.6 million deaths each year, Fauci says. Countering it requires "education, education and education."
That begins with objective assessment and accurate information.
In the documentary, VOA takes an unsparing look at how HIV/AIDS stigma affects those living with the disease, revealing shame and isolation as well as courage and compassion. Its reports, compiled into a half-hour documentary, were shot in Cambodia, Canada, Haiti, Nigeria and the United States.
The epidemic hits hardest in sub-Saharan Africa, home to roughly 25 million or 70 percent of the globe’s HIV-positive individuals. Nigeria alone has 3.4 million.
“AIDS has cut short countless lives in many parts of the world, but nowhere more than in sub-Saharan Africa, where Voice of America has millions of listeners, no doubt some of whom have AIDS or who have family members or friends living with the disease," says David Ensor, VOA’s director. “It is for them, and millions like them in other parts of the world, that VOA has produced 'AIDS: Living in the Shadows.' “
"While VOA is not able to offer medicine to fight the disease, its programming has long spotlighted what Elton John describes ... as 'its most deadly symptom: stigma.' But perhaps nothing VOA has done in the past is as powerful or as poignant as 'AIDS: Living in the Shadows.' ”
Elton John is hosting the VOA documentary because its focus on crippling stigma “resonates deeply with Elton on a personal level and also fits in beautifully with the Elton John AIDS Foundation’s mission and goals,” says Scott P. Campbell, executive director of the foundation in New York.
The foundation supports efforts to combat stigma, provide treatment and lobby governments in the United States, the Caribbean and elsewhere in the Americas. Its sister foundation in London funds programs in Europe, Africa and Asia. Since 1992, they’ve raised a combined $300 million to continue their work, Campbell says.
A persistent problem
VOA executive producer Beth Mendelson initially planned to subtitle the documentary "Leaving the Shadows." But, in the various countries, she, producer-editor Jeff Swicord and writer-producer Chris Simkins struggled to find subjects "willing to be on camera, to find someone willing to tell their stories," Mendelson says. "I was stunned by how pervasive the stigma still is … despite progress in treating the disease.”
One of those subjects -- Christian Paige-Bass, an HIV-positive gay man in Washington, D.C., who's outspoken about the importance of testing -- says the mere mention of AIDS still makes some people recoil. "It's like you turning the lights on and the roaches are running," he says.
Stigma can reach beyond those who’ve been infected.
“I feel it myself as an AIDS physician,” says Julio Montaner, director of the British Columbia Center for Excellence in HIV/AIDS. He helped establish a Vancouver facility at which people who inject heroin and other illicit drugs can do so under medical supervision. Featured in the documentary, Insite aims to minimize harm to users and to reduce their risk of spreading HIV and other diseases.
Montaner sometimes gets questioned in social settings about why he focuses on the disease and those who have it, he says. “Have you ever seen a cardiologist being asked, 'Why are you a cardiologist?' That alone tells you a story."
But the discrimination experienced by HIV-positive people is exponentially greater, he emphasizes, voicing special concern about rising infection rates and isolation in Canada’s First Nation or indigenous communities.
“Stigma can be direct and blunt or it can have insidious, subliminal effects,” says Fauci, referencing the early years of the AIDS crisis in the United States. Then, the public perceived HIV/AIDS as “somebody else’s problem, [those] who brought it on themselves. That somewhat diminished the interest and enthusiasm” to address the problem.
Since then, U.S. spending on HIV/AIDS research and patient support has grown steadily, the Kaiser Family Foundation found in a federal funding review – though much of the increase is driven by mandatory domestic care and treatment programs. The federal government allocated $29.7 billion for the current fiscal year, including about $6.5 billion for international efforts. The White House, which in mid-July announced its first comprehensive national HIV/AIDS strategy, has requested $30.4 billion for 2015, including about $6.2 billion for global work.
Panel to weigh in
Immediately following the documentary’s debut, Fauci and Montaner are scheduled to speak on a panel moderated by VOA’s Mendelson. It also will include Nigerian activist Orazulike and Elton John AIDS Foundation representative Mohamed Osman.
Like the documentary, it will be streamed on VOA’s website.
Fauci anticipates questions about the case of a young Mississippi girl born infected with HIV and considered “functionally cured” after aggressive drug therapy just after birth and for 18 months. She’d gone without treatment for at least a year while showing no evidence of HIV. Now almost 4, her recent relapse made headlines when it was divulged earlier this month.
Fauci says the case illustrates “how we are still in the very early discovery phases of a cure.
"We've got a lot of work to do."
