Neal Baer: USC Community Based Learning Collaborative Presentation - April 18, 2008

Los Angeles, CA - It’s an honor to be here today to speak to you about great cause for hope - and, unfortunately, great cause for despair. But my intention is to leave you charged with new ideas and a renewed passion for stopping the spread of HIV. I hope to inspire you to draw on your own personal stories and to piggyback with ongoing community projects so that you will reap the rewards of making a difference in people’s lives.

As a physician, I’m deeply interested in preventing disease, particularly HIV, which still is raging across Africa and Asia and is far from being conquered here in the US. I will give you some background on where we are today in the transmission and treatment of HIV and AIDS. As a storyteller, I will talk about how stories can promote change, not only in our attitudes about the disease, but also by lessening the frequency of risky behavior.

1.2 million people live in the US today with HIV or AIDS. Now, cause for optimism: The number of new HIV infections annually has declined precipitously since 1980. And death from AIDS has dropped dramatically over the past 10 years, owing to major advances in treatment.

Last year, at the 14th Annual Conference on Retroviruses and Opportunistic Infections, two new AIDS drugs were announced, each of which work in a new way. This is exciting, because many people with AIDS have developed resistance to drugs currently on the market.

Now the bad news. Although the rate of HIV infection is decreasing among some groups, it’s increasing among African Americans, most dramatically, in African American women. This disparity is the result of a complex number of factors that include cultural and social barriers to prevention and treatment. For example, today African American men and women have about two times rate of AIDS as whites.

Why? The answer has to do with disparities in drug abuse, but also with cultural attitudes about homosexuality.

I’d like to show a series of clips from “ER,” the first show on American television to depict someone with HIV living a full life. Before ER, anyone with HIV/AIDS was almost always relegated to a death sentence. “ER” helped to change attitudes about HIV/AIDS, and we know this from research we conducted with the Kaiser Family Foundation and Princeton Survey Research that showed that the following storyline was the most popular with audiences in the early years of “ER.”

To my knowledge, there are no American TV programs today with lead characters living with HIV/AIDS. (Gloria Reuben’s character returned to “ER” this year for one episode after I asked the producers to bring her back to show that she was still living a successful, healthy life with HIV.) Why has this terrible disease been pushed out of mainstream television, and, therefore, one could argue, out of day-to-day discussion? I think one of the reasons is that HIV is now seen as a disease of the impoverished. People in other places, like Africa and Asia, have it. It’s no longer in the forefront of our culture, because, fortunately, it is no longer killing large numbers of Americans, predominantly larger numbers of well-educated white men, as it did in the past, who valiantly spoke up and fought for better access to treatments.

One could argue HIV and AIDS are in a “holding pattern” here in the US. Rates of infection are down, as are deaths. Certainly, we must do more here to increase access to better education and healthcare, especially for African American women, and we cannot become complacent about prevention. The number of infections among young gay men is increasing, possibly because they did not live through the time when the disease was a scourge without treatment. They don’t know what it’s like to see someone die from the horrible opportunistic infections that killed so many in the years before the triple cocktail. But resistance and the possibility of a super-resistant, mutated strain are on the horizon and we must be vigilant to decrease infection rates amongst all groups.

Now I want to talk about a statistic that does not receive as much attention as it should: The death rate from AIDS in Africa. The number is growing - unlike here - and the number of AIDS orphans is growing as well.

Recently, I had the privilege of visiting AIDS orphans in Mozambique where I met a family of 10 children. The eldest was 17. Their parents had died of AIDS. Can you imagine a family of 10 children living alone here in the US? It is commonplace across Sub-Saharan Africa. And it will only get worse. Unless each of us does something. Venice Arts, a community organization that teaches children photography and filmmaking, and I taught eighteen AIDS orphans photography last summer so that they could tell the world their own stories. We partnered with a community organization, Reencontro, in Maputo, Mozambique, which offers support to over a thousand AIDS orphans in a country with a half a million. I can’t emphasize enough the importance of partnership - or piggybacking - with an NGO. You don’t have to reinvent the wheel; just find the organization that has an established infrastructure so that you can bring your expertise to them. We brought our expertise - storytelling and photography - to an organization supplying food and shelter to orphans. They welcomed the chance to work with us and we were grateful not to have to start from scratch, building relationships.

I will show you photographs from our project later, but I would like to show you a clip from a movie* we made with a 16-year-old AIDS orphan, Alcides Soares. By partnering with another organization, ByKids, which seeks to teach filmmaking to children around the world, we taught Alcides how to tell his own story.

(editors note: please visit ByKids for more information about Alcides Soares film.)

But what can we do? Africa is so far away. What can we do here?

As I said earlier, you wouldn’t be here today if you didn’t care, so you’ve already done more than most. But I promised you I would give you a strategy for fighting HIV and AIDS, so that the dire situation can improve.

This clip was part of a show that aired three years ago and has been seen by tens of millions of people. You don’t have to be a TV writer, novelist, or a playwright to tell stories. Each of you is a storyteller - though you might not consider yourselves one or have thought about it before. We live, I believe, as narrative beings - relating to one another through stories. We tell stories all day long - about what we did yesterday, what happened to us at work, what our children did. Just think what our lives would be like without the ability to tell a story: A swirling chaos of the present. In fact, there is a terrible neurological disease called Korsakoff’s syndrome, where the stricken individual has lost his short term memory. Oliver Sacks writes about the Lost Mariner in “The Man Who Mistook His Wife for a Hat” in which the patient, Danny, lived in flux - he didn’t remember anyone; he couldn’t relate to current events; he couldn’t tell stories because he couldn’t remember what had happened to him. He was always lost at sea.

Stories are our life force - our continuity with each other. I draw on stories that have moved me as a doctor - what I call “private stories.” These are the stories we share with colleagues when we present patients on rounds or to consultants. This is where doctors take the messy life narratives of our patients (their history, their habits, their symptoms) and try to make sense of them. This is where we make stories out of our patients’ lives, so that we can share them with our colleagues in order to understand their maladies, and ultimately, treat them.

I took “private stories” I had experienced as a physician and made them pubic — in the scenes you saw from “ER” and “SVU” - by writing them into TV drama. I call this public storytelling. These are stories that I, as a physician, am fortunate to be able to share with the public. These stories on SVU and ER are personal, dramatic, and, I hope compelling. I believe that our duties as physicians do not lie only in the clinic, on the wards, or in the OR, but in making our private stories public. Public storytelling requires us to draw on our personal experiences and stories as physicians, and to bring them to public attention in order to improve people’s health and lives.

You don’t have to be a doctor to tell stories about HIV and AIDS - or about any social issue that stirs you, moves you. Each of you can reflect on why you came today - what private, personal story compelled you to come here? Whatever the reason, it’s a good one. And each of you can draw on whatever personal story that made you come here and turn it into a public story, to be shared with others, to motivate others to learn and to take action.

Please allow me to share how I took my private story, caring for patients with AIDS, and turned it into a public story.

When I was a medical student, we worried about mothers with HIV transmitting the virus to their babies through birth or breastfeeding. Fortunately, mother-to-child transmission is rare in the US because we’ve been conscientious in testing mothers and treating them before they gave birth. But I was struck by the astronomical infection rates in Africa. I wanted to take my private story - my experience here - and use it in Africa. I told you about teaching AIDS orphans photography last summer. The year before we taught mothers in Cape Town, South Africa, infected with HIV, how to tell their stories through photography. Here are some of the women’s and children’s photographs - here is their world through their eyes.

After we completed these two projects, it occurred to me that we should try to find a way to share our experience with others doing similar projects. I came here to USC, along with Jim Hubbard and Lynn Warshafsky from Venice-Arts, to meet with Geoff Cowan, the former Dean of the Annenberg School of Communications, and the Institute for Photographic Empowerment was born. Now we have a place to work with folks from around the world who are teaching participant photography to others. A partnership was established between Venice Arts and USC so that we could share our expertise and work together more powerfully than we ever could alone.

I leave you with this simple idea. Each of you can take your private story and make it public. You can find the vehicle that is right for you: Writing OP ED pieces; protesting; speaking before your legislature; teaching photography to students; talking to teens in malls, or at church; painting; writing poetry. The way you tell your story isn’t important - it’s that you tell it. Tell it and your story will change someone’s life. Someone will hear it and not get infected. Tell your story and you will change the world.

THE HOUSE IS SMALL