Making ENDGAME: A Conversation With Filmmaker Renata Simone

Director, producer and writer Renata Simone reflects on making ENDGAME, what she’s learned over the last two decades in covering the AIDS epidemic and what she hopes viewers will take away from the film.

You’ve been covering the AIDS epidemic for more than two decades now. Tell us about how you originally started covering the issue, and what brought you to this particular portion of the story – AIDS in Black America – now.

I’ll go backwards. In 2006, we broadcast the The Age of AIDS. For that four-hour series, we did 175 interviews in 17 countries. Because we had to cover the whole world and 30 years of history, we didn’t have much time for a current story in the U.S. But I did go down to Selma, Ala., and shot the situation there, which was startling.

People were having trouble getting medicines, the stigma was outrageous, and the clinic had their front window broken three times.  So what was a two-and-a-half minute segment in The Age of AIDS became this two-hour film.

Since 2006, I’ve wanted to go back and cover the story in depth, and it took all those years in between to raise the money and then shoot it.

What originally drew you to covering AIDS? And what’s kept you reporting on it for so long now?

I was a science and biology major undergraduate, and graduate school was philosophy. I was nearing the end of my masters and the ivory tower was getting very narrow. So I wanted to find a job.

I was in the basement of Radcliffe at Harvard. There was a loose-leaf binder — this was in the ’80s — and there was a job for a senior researcher at FRONTLINE. I didn’t even know FRONTLINE was here. I called up [senior editor] Marrie Campbell, and she said: “Actually we have a lot of in-house candidates for this job and it’s very specific. We need someone who can take medical journals and translate them sort of into English so that our producers can understand. We’re working on a film about this mysterious new disease called AIDS.” And I said: “I know about science. I can read this for you. I can translate this.” So she hired me over the phone.

Then I worked on the first film about AIDS, which Mike Sullivan at WCCO in Minneapolis was producing. From that first project, I became the in-house HIV expert, because no one else wanted to touch it. There was a kind of stigma.

That stigma existed even among journalists? 

Journalists didn’t want to be [identified] with it. …

But when NOVA did an HIV film, they hired me. Then FRONTLINE was going to do another film, Who Pays for AIDS?. I came back and wrote the research paper for that, and then I just stayed with [the subject].

The reason I can stay with it for all these years is because it draws together almost every field of life. It goes from the most intimate moments of our lives, as a sexually transmitted disease, all the way up to international levels of our government. And it goes from money to politics to health and nutrition, to gender — all the things you could be interested in. …

The stories in ENDGAME are profoundly personal. You hear from people like Nel, a 63-year-old grandmother who married a deacon in her church, and finds out that her husband had concealed his HIV diagnosis from her had also transmitted the virus to her. How did you establish trust with people like Nel and get them to speak so candidly?

My good friend James Nachtwey, the famous war photographer, was talking about this one day. And I said, “What do you think it is Jim?” And he said, “I think it’s in our eyes.”

That’s a short answer for a long thing. What’s in your eyes? It’s what you know. It’s what you feel. It’s what you feel about them. It’s the way in which you will hold what they give you.

I talked to people not only about their own lives, but I talked to them about what I do. And my rule of journalism is not one that you hear often, but it’s the Hippocratic Oath: First do no harm. I really believe that, and when people know that I’m not going to intentionally or otherwise do any harm to them, it helps establish that kind of trust.

I’m also working in a medium that is conducive to that kind of trust. I’m making a long-form film, not doing a three-minute news piece. I’ve had people ask me if they can take excerpts of various things to put in their own films, and there’s just no way I would let that happen.

Some of the characters in the film, like Tom and Keith, the young men who were born with the virus, recently watched it for the first time. How did they react? Do you know if it helped them to see themselves telling their stories on screen? 

It’s been incredibly humbling and moving to get feedback from the people in the film, because so many have said that it’s been a healing process for them.

There’s that whole school of psychology that says what we do to heal and to move forward is to make sense of our own story. So to do a film that’s observational, and one that they essentially control by telling their own story, we verify their story and give it back to them in a way that makes sense. So they get a sense of cohesion about their own experience.

The young kids in the film that were born with HIV had a very interesting reaction. I wasn’t there for the screening, purposely so they could have their own freedom of reaction [without] the observer effect. But the counselors that worked with them said that they had made leaps and bounds forward in their therapy. They heard things in the interviews that they’ve been struggling to get these kids to feel, to realize for many years.

Just for a moment of levity, Keith’s response [to watching it] was that he said, “I look good.” [laughs] And then the two young women [with HIV] who had their backs to the camera said that the experience made them want to disclose and that if they had to shoot it again, they would show their faces. … It’s really sweet.

I am white. I’m dark, but I’m white. So I would go to these places and I would say, “You may notice that I’m white,” and we all laughed. Then they got tears in their eyes, and this happened over and over again. They would say, “But you see anybody else here? You’re here, you care.” That’s just awesome. I get choked up thinking about it.

It’s an untold story these people are in. Whether its Oakland or Memphis — where we didn’t end up shooting, but did the research — some people are just off the map. They feel abandoned by the media and the culture, by the government. They just feel abandoned. …

The silence that surrounds the virus is a theme that permeates the film. And that’s not just about the fact that people who have the virus are keeping silent, but it’s also the silence of others unwilling to push the issue or to talk about it.

Remember Martin Luther King said, “In the end, we will remember not the words of our enemies, but the silence of our friends.” And I think that people feel that. Like Marvelyn [Brown, a young woman who contracted the virus after high school] says, “I feel like the community let me down. My family let me down. The school system let me down.”

It’s a challenge. How can we help each other to not let people down? How can we as a culture not let people down? I called the film ENDGAME because all the tools are in place. We don’t have to let each other down. We know how to stop HIV. Prevention, it works. We know how to treat HIV. Medicines can keep it under control. Finally, the logjam in the church is breaking. A lot of the leaders in the church are starting to step forward. So all the tools are in place, and we can be in the endgame.

The film explores how AIDS has transformed from what used to be a death sentence to what is now a chronic, manageable illness. Some of the activists you spoke to say that as a result, the media’s spotlight on AIDS shifted. So what are some of the biggest myths or misconceptions that still exist today about AIDS?

One is that AIDS is cured.

It’s not cured. Even Magic Johnson said: “No I’m not cured. I’m taking my medicine the way I am supposed to.” And there are a couple of ideas in there. You have to take the medicine consistently. There’s a myth that once you feel better you can stop taking the medicine, but you can’t, it comes back.  And it comes back in a form that’s mutated around the drugs and it’s very dangerous.

There’s a myth that if you’re on the drug, you can have unprotected sex. That’s not true. … That’s what happened to Anthony and Jovonté, in the last sequence.

There are still sadly enough myths that still persist that you can transmit the virus by touching, or sharing a drinking glass.

But the most difficult one right now is the complacence because people think that it’s over. They think it’s like diabetes or a headache, that you just take something for it, and it’s not like that. All the drugs have side effects. Being on drugs the rest of your life does have side effects. It’s not fun. It’s difficult. It’s also an expensive disease for individuals and for the society, and it’s completely preventable. We all have in our lives unpreventable tragedies, things that came out of nowhere, whether it was health or something else. But this is a preventable one. …

This story is incredibly multifaceted. There are so many different angles, from cultural values, legal and policy issues, to the drug epidemic, to the way it’s affected women differently. How hard was it to tell the story with all of these lenses and make it flow the way it did?

It was a struggle. I sat for three months with my transcripts of probably 85 hours interviews spread out on my dining room table, trying to synthesize and understand how this was going to work. I made a big diagram, which [WGBH Vice President for National Programming] Margaret Drain said looked like a diagram for a nuclear reactor. [laughs]

So I could see it visually. I used the idea of embedding the history in the stories. I didn’t want to do a chronology. I didn’t want to do a series of disconnected stories. It’s a journey through history and space, because we go from Oakland to the East Coast. …

In this case, I really, really took my cues from other people. And when the people were compelling, it was because there was a really important issue embedded in the story. So that was my thought process: Who are you, what are you thinking, why is your situation the way it is. From those answers, the issues came out.  It’s not what I usually do. …

Talk about the process of making this film. How was it different from others you’ve done?

I saw big chunks of it in my head.  I saw the transitions before we went to shoot them. … I met the people, I talked to them on the phone, I went and visited them. I knew which people I wanted to cover, and then I started to see the transitions. I use these motifs. I use the blurred lights, blurring them and focusing on them. Blurred light discs are representations of the virus. So that’s one of my motifs.

Another decision I made early on is that I didn’t want to use stock footage or archive film when we do history. I wanted it to be in keeping with the idea of people telling their own stories. So I used murals. We shot murals everywhere we went. That way, it’s people telling their own stories through art. … I think you get different information from that. Like there’s one mural that basically shows the history of the riots, and the policeman who shot at a man’s head. I think that is more effective than black-and-white footage, with someone having shot it. That’s out of the hand of someone who felt the outrage. …

The other thing was the shadow photographs. Instead of cutaways, it’s an idea that this is the shadow that we don’t look at, but it’s right there.

I had these ideas in my head and then I went out and got them.  I worked with a very good cameraman with whom I had a great mental connection. When I said what I wanted for the shots, he did it. … We were really in sync. In fact, the first shot in the film was the first one we did. We went out the night before the gala, and then we shot the skyline. And the last shot in the film, the panorama of the Oakland Bay Bridge, we shot at the end.

And the hands, I knew I wanted that. Because on the research trips, I had seen people do that. The testimony. Standing and putting your hands up in church is a way of bearing witness and reaching to God. I’d never seen a ceremony like that where people called out names and stood up, but when it happened, I knew this was the end of the film.

Phill Wilson says in the film that we could have “nipped this epidemic in the bud,” but didn’t because of a lack of political will. And there are those today who argue the U.S. has not directed enough money towards prevention. Can you put in context how things are comparatively today?

They’re much better. There’s a National AIDS strategy.  There’s awareness. People cared enough to fund this film.

But there are some things that are troubling. There’s a de-emphasis on prevention. People are focusing a lot on treatment, and really I agree with those who say that we should be focusing on keeping the people who are not affected healthy, not so much just proportionately focusing on treatment. Three percent of U.S. domestic funding is on prevention. That’s not an indication of a lack of awareness, but it is in an indication that there are things we could be doing that we are not.

Why haven’t prevention efforts kept pace with the advancements in life-saving medicines?

No one makes money on prevention. And prevention involves talking about things that a lot of people don’t want to talk about. You have to talk about safe sex. You have to talk about drug addicts staying safe. You have to talk about what happens in prisons. You have to talk about young kids and adolescent sex education. There’s a lot of things that people would rather not [address], and medicine is easier in that way.

This is a story you’ve been covering for decades, but what did you learn in the three years you made this film that you didn’t know before? Did anything surprise you or change the way you think about this public health crisis?

One thing that became really clear to me during The Age of AIDS, but even more so now is this. People would ask me, “How do you think we can end AIDS?” I would say, “Teach little girls to read.” This may sound glib, but I’m serious.

I’m always surprised, and even more so in this film, about how women’s lack of power in their own lives put them so much at risk. If a girl can read, she can support herself. And if she can’t [read], she probably can’t [support herself]. She may end up in sex work; she may end up in a relationship that’s abusive or puts her at risk in some way that she can’t get out of.

The woman at the end of the film whose back is to the camera and says her boyfriend will shoot her [if she tells him she has HIV], the rest of that is that she can’t leave the boyfriend because he pays her rent. I’ve seen this all over the world; I’ve seen this in South Africa, in Thailand, in the Ivory Coast; I’ve seen it with my eyes when I’ve interviewed these girls, but to see it here breaks my heart.

What message do you hope viewers take away from the film?

I think there are three reasons why we should care.

The first, and the least altruistic reason, is that it’s expensive. Sixty-three percent of the people who are in treatment for HIV are in government programs. So it’s a financial issue.

Second, you don’t know your own risk. Bambi Gaddist says, “Don’t forget, a wedding ring is not a condom.”

And third, do not judge. I hestitate to use a religious aphorism: But for the grace of God, there go you. It could be you.  …

We think that we could do better, but if you walked in those shoes, if you were born in that place, you would find yourself in the path of the virus in the same way that they did. As Dr. Joyner [the doctor in the film who treats patients in prison with HIV] says, there’s no room for judgment.

Transcribed by Kyna Doles