At SELF, we’re big on discussing how societal stigma impacts the way people navigate their physical and mental health. Culturally, we’ve made some incredibly important strides in breaking down the shame that surrounds illness. Just look at the scores of people opening up about depression, miscarriage, anal cancer, and so much more. But even in the face of this progress, health stigma still persists. For World AIDS Day 2020, we wanted to talk about the stigma that still exists around HIV/AIDS.
Before I say more about that, I want to clarify the difference between HIV and AIDS, since so many misconceptions stem from misunderstanding the nuances here. HIV, or human immunodeficiency virus, weakens a person’s immune system, making them more prone to potentially life-threatening infections, the Centers for Disease Control and Prevention (CDC) explains. AIDS, or acquired immunodeficiency syndrome, is the most severe stage of HIV.
People can get HIV in a few different ways. This virus mainly spreads via bodily fluids people swap during anal or vaginal sex and also when sharing drug injection equipment. It’s no coincidence that these are deeply and unfairly stigmatized activities. Our society all too often still looks down upon sex, substance use, and addiction, with very real and harmful consequences.
Contrary to popular belief, people with HIV can live long, healthy lives. This is thanks in large part to antiretroviral therapy (ART). In what’s known as viral suppression, ART can lower the amount of the virus in a person’s system. If viral suppression is effective enough that a test cannot detect HIV in someone’s body, that person has what’s called an undetectable viral load. At this point, HIV is basically not affecting a person’s health and is generally much harder to spread (or even virtually impossible to spread, depending on the activity), the CDC explains. There are also drug therapies that can help with HIV prevention: PrEP (pre-exposure prophylaxis), which people who are more vulnerable to HIV exposure can take daily to prevent transmission, and PEP (post-exposure prophylaxis), which people can take shortly after they think or know they’ve been exposed to the virus. But there are barriers blocking some people from access to these life-changing technologies, like a lack of health insurance or living in an area without many health care clinics. And without ART specifically, a person with HIV can develop AIDS. In this phase of HIV, people can wind up with “opportunistic infections” like pneumonia and certain cancers because of their extremely compromised immune systems. These infections are incredibly dangerous to people with AIDS. Sadly, many people who die from AIDS-related illnesses experience consistent stigma along the course of having the disease.
The stigma surrounding HIV/AIDS can manifest in a number of terrible ways, from offensive “jokes” about contracting it, to fear-mongering about sex, to both subtle and blatant discrimination, and beyond. This impacts how so many people think about HIV/AIDS, but it of course has the biggest effect on people actually living with HIV or AIDS. Around 38 million people worldwide had HIV/AIDS in 2019, according to HIV.gov, and around 67% of people with HIV were on ART to prevent the virus from progressing to AIDS. In the U.S. specifically, it’s estimated that around 1.2 million people have HIV. While around 19% of all people with HIV don’t know they have the virus, the vast majority do. Meaning there are lots of people out there who are getting the message that they’re deeply flawed or tainted simply because of the way their immune system functions.
This is why World AIDS Day, which takes place every December 1, is such an essential awareness-raising campaign. Launched in 1988, the mission of World AIDS Day is multifaceted: to call attention to the HIV epidemic and how we can bring it to an end, to spread knowledge about what HIV and AIDS actually are, to combat stigma, and to honor those who have died from AIDS.
This year, the theme of World AIDS Day is Ending the HIV/AIDS Epidemic: Resilience and Impact. “The theme reminds us of all we can achieve together when we focus on impact by using data to deliver high quality, people-centered HIV prevention and treatment services to those most in need, tackling stigma and discrimination, and empowering communities,” according to a statement about the purpose of the day this year. “It reaffirms the essential role of resilience, which enables individuals and communities to meet the challenge of HIV/AIDS even in times of adversity.”
At SELF, furthering these goals has involved offering guides to talking with partners about getting tested, explaining why PrEP isn’t just for men who have sex with men, and breaking down what safe sex means when it comes to HIV transmission. But we also want to shine a light on people doing the important work of reducing the stigma of living with HIV or AIDS. One of those people is Jonathan Van Ness, our December digital cover star. In the profile, Van Ness explores his journey with HIV after being diagnosed in 2012. “There’s a younger part in me that was scared that if I did come out with my status and talk about it, that that was going to be the only facet of me that people were going to want to talk about or think about or acknowledge,” he says. “If that’s the only facet that people are going to see me for, that’s on them, that’s not on me.”
Van Ness, like anyone else with HIV or anyone who is dealing with AIDS, is so much more than this one facet of their health. So, this World AIDS Day and beyond, I hope you’ll join us in chipping away at the stigma. Learn more about the basics of these health issues, and share your new knowledge on social media with the hashtag #WorldAIDSDay. Read about the experiences of people living with HIV or AIDS. Push back when you hear people “joking” in a way that perpetuates shame. And remember, through it all, that HIV and AIDS are diagnoses, not definitions.