October 14, 2011
When most of us think of HIV research, we envision laboratories filled with researchers dressed in white lab coats, mixing concoctions in beakers and viewing specimens through a microscope. It's very rare, when we talk about HIV research, that the people actually living with HIV come to mind. But "Making AIDS History," a new public service announcement (PSA) campaign created by the Foundation for AIDS Research (amfAR), is trying to change that. amfAR is an organization dedicated to funding HIV research and finding a cure.
amfAR's chief executive, Kevin Frost, told me, "This campaign is an extension of our desire to recognize our own history as an organization of 25 years in the fight to end the global AIDS epidemic." He added, "We also wanted to emphasize that research only matters when it benefits people and we set out to find those people who have benefited from our work."
One of the really great things about this campaign is that it shines light on people living with HIV in the Midwest, which is rare in a national conversation about the epidemic. According to Frost, this development was intentional. "While we understand that the epidemic disproportionately impacts large urban cities such as Chicago, New York, Miami, Los Angeles and San Francisco, people who live in the Midwest, also called the flyover states, and their issues often get overlooked," he said.
I recently sat down with three people who are featured in the campaign: David, Christina and Lonny talk about their lives, how HIV impacts their lives and why being in this campaign is important.
David is a young man who never thought he would ever contract a disease like HIV. However, his ignorance was challenged when he contracted HIV through unprotected sex. David almost ended his life the same night of his diagnosis, but fate turned his devastating diagnosis into a powerful advocacy-driven voice for all those living with HIV. David refuses to stand idly by as those infected are stigmatized and repressed.
David and I spoke a lot about the stereotypes that people use to assess risk and the misconceptions that people have about people living with HIV. "People ask me all the time was I promiscuous, did I come from a single-parent home, or did I even graduate from high school," he said. "And I didn't fit into those categories. I was someone who got tested every six months and thought I was in a monogamous relationship." He speaks out publicly in hopes of teaching young people that HIV risk is about behavior and it can happen to them too. He does this all without fearing stigma. "I am not embarrassed with my diagnosis. When I was having sex, I wasn't embarrassed. So why would I be embarrassed now?"
David also stressed the importance of having faith and recognizing that HIV does not have to be a death sentence. He confided to me that his brother is living with AIDS, and had lost hope in life. David saw firsthand how a positive attitude can really be the difference between life and death. "I knew that I didn't have a choice, but to be a catalyst of hope," he said. "My family had seen what AIDS can do and how it can take away your joy." Now, because David's brother sees how empowered David is, he too is finding the strength to get better. "Two years later and he looks at me for his strength, that glimmer of hope."
David hopes that he can serve as a glimmer of hope for everyone else.
View his PSA below:
Christina is a young woman who was infected with HIV at birth and endured a rough childhood full of illness after illness. As a rebellious teenager, at one point, she refused to take her medication, which resulted in an AIDS diagnosis. Now, Christina is the mother of a healthy, HIV-negative baby and lives a life full of hope and discovery.
Christina and I talked a lot about her childhood and how she faced a lot of adversity and stigma when her status was revealed to her community against her will. "I was hit by a car when I was 10 years old when I was with my friends. And the police officer on the scene told my friends I was positive," she said. "Within hours, everyone in my neighborhood knew."
Christina also struggled with being "sickly" most of her childhood, but when she started treatment, she got much better, which was something that she didn't believe would ever really happen. "When I was first diagnosed, the doctors told my father that I wouldn't have a long life expectancy," she said. "So I grew up very aware of my own mortality and didn't make any big plans for my future, because I wasn't sure that I would survive."
But she did more than just survive: Christina found love and even recently had a baby. And while she admits that life has been a journey -- she was sexually abused; was quite a rebellious teenager; got sick her freshman year in college and left school; and ended up moving to California to start a new job -- she owes her current life to HIV research and hopes that people see just how beneficial amfAR is to the HIV community. "I just had to be part of this campaign," she said. "It really brings to light the treatment side of their work and the faces of those who lives are better because of it."
Her message is clear, "Never give up hope."
View her PSA below:
Lonny did not want to go through the same abuse and neglect he witnessed his partner suffer while undergoing AIDS treatment, or lack thereof, at a time when nurses were scared to touch people living with HIV. Instead, he wanted to die with dignity, and thus, opted out of treatment for more than 10 years. After a stay in the hospital, and the realization that he wasn't going to die immediately, Lonny decided to seek treatment and be a voice for all those who had suffered like his partner had.
Lonny and I talked a lot about how fear, homophobia and stigma stopped him from getting tested even though he knew that he was HIV positive back in 1983. Even having Kaposi's sarcoma (KS) wasn't enough for him to seek the help that he needed. He admitted that those early days were very hard and very dark. "I remember all of these missing signs up all over the city, but really they weren't missing, they were dead," he said. He also told me about the AIDS phobia he experienced in his own gay community at that time. "I remember walking in bars and being spit on and being told, 'You have the gay cancer,' because I had KS."
It wasn't until 1995, when he had a 107° fever, and almost died, that Lonny got tested. When the doctor came back with his test results, he wasn't surprised. "I told her, 'I have AIDS, don't I?'"
Over the years, through involvement in many clinical trials, including one for hepatitis C, Lonny has made remarkable progress in his health. He has been undetectable since 1999.
He has also made some progress is fighting stigma in his community. He has helped create an AIDS organization in his area, he advocates on behalf of the Campaign to End AIDS (C2EA) and he talks to young kids about HIV. "So many of them are afraid of how they will be treated by others if they test positive, and I just tell them, there is life after HIV and that no matter what, we all have a future."
View his PSA below:
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.
Copyright © 2011 The HealthCentral Network, Inc. All rights reserved.