Confronting a Global Pandemic: An Examination of the Causes, Cultures and Conditions that Define AIDS

James lives in Torono, Uganda. He takes care of his younger sister Jessica. His father had died of AIDS and his mother had disappeared. James is seven years old.

Sergei and Lena, a Russian couple, have a young son, Nikita, who lives with Lena's mother on the outskirts of Moscow. Sergei and Lena both contracted the HIV virus by sharing infected needles.

Nagaraj is a truck driver from Nammakkal, India. He and his wife Bhanu are expecting their first child. And they are both HIV positive.

Alex is a young gay man from Rio de Janiero, Brazil, a country whose aggressive and progressive education and health care policies have given people like Alex a chance to rebuild his health.

Lek is a former sex worker in Thailand. She resigns herself to living out her days alone in a Buddhist monastery, but her family finally opens its heart to her and invites her to return home...to die.

These are the characters whose stories drive Rory Kennedy's Pandemic: Facing AIDS , a wide-ranging, yet tightly constructed examination of the causes, cultures and conditions that define AIDS in the 21st century. The film, which airs on HBO on June 15, is the centerpiece of a multi-disciplinary project that includes a traveling photography exhibit, featuring the works of 100 photographers representing 50 countries; a book, published by Umbrage Editions, that includes these photographs, as well as essays from UN Secretary General Kofi Annan, Nobel Laureate Nadine Gordimer, among others; a CD of world music; a website (www.pandemicfacingaids.org) that includes elements and references from the aforementioned components; and comprehensive educational materials for distribution to schools, government agencies, nonprofit organizations and grassroots community groups throughout the world. HBO, AOL Time Warner and its foundation and the Bill & Melinda Gates Foundation were instrumental partners in making the Pandemic: Facing AIDS project possible.

The interest in the AIDS issue came to Kennedy 12 years ago, when she made Fire in Our House, a documentary about needle exchange programs in the US. But the inspiration for Pandemic: Facing AIDS came in 2000, when she was invited by the Clinton Administration to serve on a White House delegation to Africa to investigate the AIDS crisis there. "What I saw on that trip was very impactful and deeply affecting," she remembers. "I was familiar with the numbers going over there, but meeting people was devastating. When we were there we met a woman with 11 children, 10 of whom had died of AIDS. The level of abject pain and suffering that we witnessed was really unimaginable, and what became clear as I learned more and more about AIDS was that what was happening in Africa was beginning to happen in Asia, the Caribbean, Eastern Europe and other places around the world. I felt that if we can learn from what was happening and what had happened in Africa, it would be much easier to prevent the AIDS crisis from spreading than dealing with it once it had spread. We felt that we should make a film that really dealt with the global pandemic."

Kennedy's previous feature-length documentary, American Hollow , profiles a family in rural Appalachia. She and cinematographer Nick Doob—who also worked on Pandemic had spent the better part of a year living with and documenting the family. With Pandemic: Facing AIDS , the timeline was much tighter—14 months between when the production team received initial funding to when they completed the film-and the geographical scope was formidable. And with 50 million people living with HIV in the world today, narrowing down to a cross-section of five people was a tremendous challenge. So the strategy become multi-pronged: "We wanted [the characters], as much as possible, to represent the experience of living with AIDS, and of course there's a different experience for every single person who has it," says Kennedy. "We wanted to show a diversity of countries. We also wanted people who had contracted AIDS in different ways, and who came from a different class or group of people." In Russia, for example, the virus has been spread largely through sharing infected needles.

And while the AIDS pandemic is very much a part of the global landscape, some countries, notably Brazil and Uganda, have taken greater measures to make AIDS education and prevention a part of their respective public policies. "We also wanted some level of hope," says Kennedy. "A lot of people hear the numbers and hear the stories and feel that there's nothing that they can do. So we also identified countries' programs that had been effective. One of the things about AIDS is that it's a disease that's entirely preventable. Part of our effort is to show people that in fact there is a lot that people can do, that politicians can do, that policy makers can do to prevent the spread of AIDS and treat people. So we really wanted to focus on countries that have had some level of success."

Once Kennedy and her team, including producer Liz Garbus, had established the strategy of narrowing down the main characters for the film, they identified different programs in different countries that were working with the populations in which the filmmakers were interested. Members of Kennedy's team would scout ahead of her and meet with different people and narrow that group down to one person. Kennedy would then spend a week to ten days in each country with the characters and the various community groups. Local production companies and producers would then help Kennedy's team with follow-up. In the story of Nakaraj and Bhanu, for example, Bhanu was seven months pregnant when production began. "We wanted to capture the birth of the child," Kennedy relates. "We had a local producer who was very familiar with the production, setting the style, tracing the woman's story and her husband's story. He earned the trust of the characters and also was our interpreter. So he was able to go back when she was giving birth and film that moment.

"We really relied heavily on the people we worked with in the specific countries who knew we were working on a film where people spoke six different languages," she continues. "None of them really spoke English. That was its own challenge—trying to make connections with people through interpreters, trying to earn their trust. But I think we were very lucky and ended up finding extraordinary people who really opened up a lot."

And if language barriers posed a challenge in production, consider the post-production process: Kennedy, editor Kate Amend and writer Mark Bailey faced 200 hours of material, very little of it in English. After getting that material translated, the post team read the transcripts and narrowed the footage down to 60 hours. After coming up with an outline of what the narrative arc of each of the stories would be and what the focal points were, the team pared that footage down to 30 hours, which was then subtitled for the first time. "Then we basically went through the process that documentarians go through, which is really trying to keep a balance between the characters and connecting with people and also conveying information," she explains. "We decided pretty early on that the information was secondary to the characters themselves. The most important thing was to try to get these characters from so many different places from around the world who spoke different languages to speak to a Western audience in a way that they can identify with."

All the while, Kennedy was developing the ancillary materials—the book, the educational materials and the photography exhibition, with Nan Richardson at Umbrage Editions; the website, with the AOL Time Warner Foundation; and the CD, with Warner Music Group (Miriam Cutler composed the music, along with Philip Glass). The film and photo exhibition premiered at the AIDS Conference in Barcelona in July 2002, and the website and CD were completed by then as well. The educational materials were completed in December 2002, and the book is being released this month in conjunction with the telecast.

Other key players in helping to make the Pandemic: Facing AIDS project happen were the committees and consultants—particularly in the fields of medicine and education. Says Kennedy, "They played a very crucial role in deciding on which countries we were going to focus, what kind of programs, what types of people, why we needed a balance of people. All of those decisions were certainly impacted and influenced by experts. Once we got a rough cut, we sent it out to different people in the AIDS arena to make sure that there was nothing in there that was offensive or incorrect. We did the same thing with educational materials, as well as the book and the website. There are subtle politics around AIDS. It's very important what words you use, or don't use. Those types of things contribute to alienating people if you don't present them in a way that is more open."

The surviving characters have seen the film—although, sadly, Nagaraj passed away recently—and Kennedy is planning additional events in Uganda, India and Brazil. The educational materials and website are available in five different languages, and the Pandemic team is currently conducting an outreach campaign in the US, with 3,500 educational packets, including a 40-minute version of the film being distributed to schools and nonprofit organizations. Kennedy will also work with the United Nations to distribute the materials internationally, including to such organizations as the Uganda Orphans Rural Development Programme, which is featured in the film.

"Once you're exposed to the suffering and the experience of all the people who are living with AIDS, it's really impossible to turn your back on that," Kennedy maintains. "A lot of my energy now is in trying to get this project out to as many people as possible, to use this as a tool for people to get involved in the fight against AIDS. My goal is to try to get that message out there as widely as possible. As a filmmaker, it really impacted me in the power of film to persuade people to get more involved and use this project as an advocacy tool to educate people and encourage action."

Thomas White is editor of Documentary.