As surprising as it may seem, there are only two weeks left of the DukeEngage-New Orleans program. Exactly six weeks ago I started interning at CrescentCare, a nonprofit organization dedicated to providing affordable health services to underserved individuals in the Greater New Orleans area. When founded in 1983 by a small group of volunteers, CrescentCare, or NO/AIDS Task Force at the time, started out as a telephone hotline service in response to the devastating AIDS epidemic that ran rampant across the country in the 1980s. Although over the past several decades CrescentCare has expanded well beyond just an HIV/AIDS volunteering organization, it remains unwavering in its effort to reduce new HIV incidence in at-risk populations and offer a full range of clinical and support services to people living with HIV in the local community.
In order to better understand the community needs and improve clinical care quality, my coworker Joy and I had the opportunity to go to several CrescentCare clinics and observe their clinical work flows. By mere coincidence, we sat in on a HIV stigma presentation during our visit to the FACES (Family Advocacy, Care and Education Services) clinic, and the experience led me to a deeper understanding of the far-reaching impact of institutional stigma on the lives of people living with HIV.
It is the nature of humans to be afraid of the unknown, and this deep-rooted fear can be traced back to our ancestors who lived at a time when the unknown could easily mean danger and therefore lower chances of survival. This fear is encoded in our DNA and once provided an evolutionary advantage for our predecessors. However, in today’s society this survival-driven fear has morphed into many insidious forms: homophobia, xenophobia, antisemitism, islamophobia, just to name a few.
Not surprisingly, the stigma around HIV/AIDS also stems from fear. Since the AIDS outbreak in the 1980s, the epidemic has taken a heavy toll on mankind — more than 35 million people were living with HIV/AIDS around the globe by 2013 and hundreds of thousands of people had died from the disease. Throughout the history of AIDS, stigma has been woven into the language we use to address the disease — in the early days, AIDS was known as “gay-related immune deficiency (GRID),” as mentioned in a 1982 New York Times article, and also as “gay cancer” or “gay plague,” given the disproportionate incidence of AIDS in the gay community at the time. In a state of confusion and despair caused by the epidemic, people sought to give meaning to the mysterious disease by grouping it with a particular population. By calling AIDS “gay cancer,” some people felt assured that there was no way they would contract the disease so long as they steered clear of gay men, and it was easy to fault an already marginalized demographic for all the bad things that had been happening. The initial portrayal of the disease further marginalized the LGBT population and etched a negative image of AIDS victims in the public mind.
Nearly 40 years after the first reported AIDS case in the U.S., the rhetoric of HIV/AIDS is still shaped to cast people living with HIV in a negative light in a way to seclude them and make them feel invisible. Sometimes the implication is subtle in our language — some people use words such as “HIV infection” and “AIDS virus” without giving them a second thought. It is also common for people to associate AIDS with homosexuality, drug use, sex work, and promiscuity, which are deemed unacceptable in many cultures and societies. The lack of knowledge about HIV/AIDS and cultural taboo lead to immense misconceptions, prejudice, discrimination, isolation, stigma, and injustice.
As part of a global effort to reduce the stigma around HIV/AIDS and advocate for people living with HIV (PLWH), the U.S. implemented the Stigma Index Project in 2013, and 300 PLWH in New Orleans and Baton Rouge were interviewed regarding their personal experiences with stigma and discrimination. About 40% of the interviewees attributed the gap in time between getting a positive result and receiving HIV care to inability to deal with positive diagnoses due to fear, insecurity, and distrust. Moreover, many reported incidents of verbal harassment, sexual rejection, internalized discrimination and even discrimination by health care providers. As a result, 68% suffered from depression; 59% experienced severe anxiety; 33% withdrew from family and friends; 24% reported income loss; 22% had increased drug and alcohol intake. I remember sitting there in silence while the representative was giving her presentation, trying to wrap my head around all these statistics and imagine how much strength and stamina it must have taken for these people to come out and recount their stories. As an HIV tester at Duke, I am lucky in that I haven’t had a single positive case, and the truth is I hope I never will because deep down the thought of having to inform a person of their positive result scares me despite all the training I have received. However, my fear is nothing compared to what these people have to deal with on a daily basis. Their fears of being identified in public, being seen with their medications, being shunned by their doctors, being judged by their families and friends, and being fired from their jobs add a tremendous amount of weight to the burden of a positive HIV diagnosis, which on its own is extremely difficult to cope with. These fears also take a physical toll on people living with HIV as they fall out of care due to isolation and despair, causing higher rates of transmission.
I know as a privileged college student I can never truly relate to their life experiences because, the truth is, they are living a whole life away from me and the best I can do is trying to empathize with them through snapshots of their lives. Although the work I’m doing at CrescentCare does not involve interactions with HIV patients, I have come closer to understanding their hardships by becoming more educated about HIV/AIDS and hearing about their stories. I also know that the system can’t be fixed in one day — discrimination and stigma in healthcare, workplace, and community settings are fueled by longstanding prejudice and are embedded in people’s attitudes towards high-risk populations. However, what we need to keep in mind is that secluding and neglecting AIDS victims does not make the disease go away. Instead, barring people from accessing health services and obtaining work opportunities only exacerbates the epidemic by making people more vulnerable to HIV. What we can do is to be open-minded and have respect for people living with HIV who are fighting the disease with incredible strength and bravery and initiate open dialogues between individuals and communities in order to build solidarity. At the end of the day, we are in this fight together and only together can we win this fight.