Last month during a patient's visit, I was reviewing the demographic sheet in his chart and noticed he'd listed his emergency contact as:
2829 King's Landing
King's Landing, Westoros
When I asked him about it, he laughed because he was surprised I'd caught the quip and understood the reference. She was the character he most admired on Game of Thrones. We talked about the show for a few minutes and as the moment of levity passed, his smile faded because I wanted to know why he'd chosen to use a fictional HBO character as a next of kin in an official health record. He paused and hung his head in silence. I knew his silence meant he was still struggling with his diagnosis and worse, he probably hadn't told anyone. A tear fell as he told me he wasn't ready for people to know he was HIV-positive. I know this reaction well. I've written about it before. It's stigma and it's our elephant in the room. It's looming large and threatening to doom progress toward ending the HIV epidemic. Stigma discourages people from wanting to know their HIV status. It causes disengagement from health care. It results in hiding, shame, embarrassment and isolation. As trite as it sounds the solution is talking. We have to talk about HIV because talking about a thing helps normalize it. But we don't.
Someone recently asked me why HIV remains so highly stigmatized and why people still know so little about HIV and its treatment advances. As I pondered the question I realized it's because our society stopped talking about HIV 20 years ago. Consequently, our HIV psyche is stuck in the 1990s -- a time when HIV was highly stigmatized and largely perceived as a gay, white male disease. It was associated with gaunt and emaciated appearances and death. People remember a time when the treatment side effects could make you feel sicker than the disease itself. If we'd kept talking about HIV as a society, our perceptions would be that HIV is a chronic but treatable sexually transmitted infection.
When I talk to community about solutions to changing this perception, people often say our society doesn't talk enough about HIV. We don't. Churches don't talk, schools don't talk, artists don't talk, athletes don't talk, politicians don't talk -- because it means we'd have to talk about sex. It's ironic -- our society is obsessed with and accepting of images of sex in music, television and film, yet the subject is taboo in our most influential institutions: schools and churches. Many people and institutions are talking about HIV but to combat widespread stigma this conversation must spread beyond us and infused throughout society. Conversations about HIV must be integrated within discussions about other things we talk about, particularly within conversations about health. Even now, despite recommendations most doctors are not routinely screening for HIV during yearly physical examinations.
I was recently invited by a church here in Washington, D.C. to educate its members about HIV. Upon my insistence that each person in the audience find ways to strike up conversations about HIV, a woman asked me to give examples of how someone could strike up a conversation about HIV. I responded by role playing as if I were speaking to someone in a queue leaving church or in the grocery store check out line. The examples helped them understand but more importantly her question helped me see how difficult this challenge can be for people who don't think about HIV everyday. That's why we need help from visible people to get these conversations started. Alicia Keys has recently launched an awareness campaign. We need more of this! Imagine if Daenerys Targaryen were to spend a scene educating her minions about HIV prevention. One of my dreams is to meet with Chris Rock and convince him to embark on a comedy tour focused on health in America. I am convinced he can make anything funny. Because comedians have an amazing ability to entertain while educating, we could witness the shift we are seeking if more like him would educate society about HIV. Similarly, I dream of Scandal writers incorporating all the relevant messages in a single episode. That would be powerful!
We desperately need a sea change -- something different. I am convinced these tactics would have tremendous impact. A few years ago, I saw a quote by President Richard Nixon posted in the Newseum that says, "The American people don't believe anything until they see it on television." I believe it's true but I'd add... and on the radio and in the movies and on the Internet! When it comes to arts, theater and music, we are impressionable. This conversation has to become more mainstream. We've got to talk and we need more voices -- visible voices. It sounds simple, but often the solutions to overwhelming problems only require a simple solution. It's hard to get much simpler than this one.
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