By Megana Sekar
I’ve always firmly believed that a small action by an individual can have a reverberating effect. A few words of support could create a huge shift in a person’s day or week and advice you give a friend in passing could change their mindset. When I first heard that the United Nations’ theme for World AIDS Day 2019 was “Communities make the difference,” I reflected on the history of the AIDS epidemic and how passionate individuals were able to create a better future. The progress that’s been seen in treatment and awareness could not have happened without people living with HIV and their allies fighting for a seat at the table.
The documentary How To Survive A Plague chronicles how AIDS activists used unapologetic tactics to get attention, and then used those confrontations to offer new policies rooted in the knowledge of what their community needed. During the 1980s, thousands of people had already died from AIDS, but the crisis was still being ignored by both the Reagan administration and medical bureaucracies. In 1987, people living with HIV/AIDS came together to form ACT UP, or the AIDS Coalition to Unleash Power. Soon after its founding, ACT UP held “die-ins” on Wall Street, New York’s City Hall, and in front of the Food and Drug Administration (FDA). These activists literally put their bodies on the line to demand respect and access to treatment… And it paid off. After ACT UP protested in front of the FDA, activists met with government officials. Soon after that, the FDA announced a shortening in the drug approval process and increased access to experimental drugs.
David France, the creator of How to Survive a Plague, has said that ACT UP’s members united in anger towards how they were treated. By channeling their anger into action, activists like the ones who formed ACT UP changed patient advocacy. No longer were people living with HIV forced to the side. Instead, progress was led by those it would affect most. AIDS activists of the past and present serve as examples of the good that can come from passionate individuals coming together.
Today, the Pediatric AIDS Coalition at UCLA (PAC) strives to embody the courage and tenacity of early activists and help continue the advocacy they started. PAC’s theme for the 2019-2020 year is ‘Unite.’ We chose this theme as a reminder that only by uniting diverse communities can we break the stigma of HIV/AIDS and create an AIDS-free generation. When we raise money for our beneficiaries, we hope to support them in their mission to provide strong communities to those living with and affected by HIV and AIDS. Ultimately, PAC aims to empower individuals living with HIV by empowering the communities around them.
We work closely with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF), which works with local organizations across the globe to give resources to existing health structures, community health workers and women and children living with HIV/AIDS. EGPAF trains health workers to provide HIV counseling and testing, sustain support groups in the community, and check up on other women to make sure they are following treatment plans. The Laurel Foundation, another one of our beneficiaries, provides safe spaces for kids affected by HIV through camps, workshops, and community events. Additionally, PAC’s direct mentorship programs organizes retreats and events with many of the campers at the Laurel Foundation, such as the Life Skills Retreat held every President’s Day Weekend. At these retreats, kids can choose to talk about their experiences with adversity or not, but regardless are surrounded by an understanding and caring community.
Now that I’ve shared a few of the ways our beneficiaries empower others, you might wonder how you can advocate for those living with and affected by HIV in your own communities. I asked myself the same question a few years ago. Personally, PAC has helped me speak up for the things I care about. A few months ago, one of my close friends made an uneducated joke about AIDS, comparing it to something negative. I knew that some discomfort was worth it to educate him and change the narrative. So, I spoke up and changed the conversation to why my friend shouldn’t tell jokes at the expense of other people, about something he didn’t yet understand. I told him that he can’t know whether his words would affect someone’s self-esteem or perpetuate a harmful stigma. That small incident reminded me that even though it’s usually easier to stay quiet, every moment you choose to speak up for something you care about matters. Today, take a moment to think about the ways you impact those in your communities, and the ways your communities make a positive impact on the world. On this year’s World AIDS Day, and every day of the year, be an advocate and unite others in the common goal we all share – creating a generation free of HIV, AIDS, and stigma.