The words March Madness probably conjure images of college basketball and fantasy brackets. But on Washington, DC’s Capitol Hill, the phrase denotes something much different; instead of tallied points and tournaments, for staffers in the nation’s capital it means a flurry of meetings that coincide with the coming of spring. In DC, March coincides with the time when Congress gets ready to pass the annual budget and lawmakers meet face to face with constituents to learn why they must back certain policy priorities and where they must fight to allot federal dollars.
Among the mad dash of people looking for facetime are AIDS advocates, who every year descend on the Hill to muster support for the many ways in which Americans need money to fight the ongoing AIDS crisis, including money for prevention, treatment and housing, just to name a few. In these encounters, there is one thing that advocates have that can affect the number of dollars allotted for AIDS better than anything else. It’s something that everyone has, a secret weapon that advocates know make a tangible difference in the hearts and minds of Congresspeople: their stories.
“Making that personal connection to the dollars and cents is what changes hearts, minds and votes,” says Carl Baloney, the vice president of public affairs and chief policy officer at AIDS United. “This is a chance for them to tell stories to people in power about how their vote would affect them.”
As much as we might feel closer than ever to politicians because of social media platforms, the reality is that nothing can replace an in-real-life interaction; that’s where AIDSWatch steps in. The annual event — put together by AIDS United, Harvard Law School’s Center for Health Law and Policy Innovation and the U.S. PLHIV Caucus — brings hundreds of people to DC each year and allows advocates to step up and become integral to policy and funding decisions made in Congress. It is the rare opportunity to not only share your unique insight and experience with people in power, it’s also a chance for the veil to be lifted into the process of lawmaking.
It’s no secret that funding for AIDS programs is in a more tenuous spot than it’s been in previous years. Even President Joe Biden previously warned in an October 2023 speech that some lawmakers are “trying to wipe out federal funding to end the HIV epidemic” as part of a larger push of anti-LGBTQ legislation. Some of this is no doubt due to the palpable feeling of division coming out of DC these days. But, according to Baloney, AIDSWatch is interested in the antidote to the current divisive nature that plagues Congress. “We really need to find common ground across movements to make sure we build power to fight against those attacks,” he says.
To that end, the theme for this year’s AIDSWatch is “We’re in this together,” a phrase that underscores the need to work across differences, including the political aisle, to find solutions that benefit both people living with and at risk for HIV.
In 2023, over 350 people from 37 states attended AIDSWatch. The advocates managed to have 187 meetings with members of Congress. That’s a far cry from the early days of the event. According to Baloney, when AIDSWatch started over three decades ago, the number of people in attendance were just a few dozen. But as the numbers have grown, and the nature of the AIDS epidemic in the United States has changed, face time with elected officials has become even more crucial to ensuring that funds are allotted where they are needed.
Making political change can seem like a Herculean task, like moving a diplomatic mountain. But the reality is that a powerful story has always been the key to making change in the HIV community. People like the late Ryan White and his mother, Jeanne White-Ginder, as well as the late Hydeia Broadbent have affected widespread change and shifted cultural attitudes by sharing a part of themselves with the world. To those who run AIDSWatch, the same principle rings true; telling a lawmaker how the dollars allocated to the Housing Opportunities for Persons With AIDS program have helped you is a much stronger message than any number on a ledger could ever be.
“There’s something so crucial and pivotal about sharing your story with your representative,” Mackenzie Flynn, the policy and annual conference manager at AIDS United, tells POZ. “That’s what really gets change going. That’s the power of grassroots work and organizing.”
Despite sounding like it might be a bit wonky for the average person involved in HIV work, Flynn says that the conference is not one that requires a deep knowledge of policy or politics. In fact, this might be one of the few conferences where being able to tell your story can lead to direct change. “No one needs to be a policy expert,” she says. “They can just go on the Hill and really talk to these people.”
More than just putting a face to the HIV community, people who attend often find themselves more empowered by learning more about the political process and even being able to hold their politicians to task for their votes. This particular point can be empowering during a crucial election year. “One of the tools that we use to learn how to make decisions about who we vote for is to pay attention to what they do while they’re in power,” Baloney says. “We’re going up on the hill to tell folks that if you do not do what we need, we’re going to hold you accountable in the ballot box.”
AIDSWatch attendees become part of a symbiotic relationship between elected officials and community members, but they also get to grow closer with other people who are doing the work. Because AIDSWatch is a community-based event, Flynn and Baloney have both emphasized that this year’s event has incorporated community feedback and continues to evolve, even after three decades going strong.
For instance, this year the conference will feature workshops, sessions and spaces that are Spanish-language first, after a significant contingent of monolingual and Spanish-first speakers attended in years past and advocated for English to not be the only language represented at the event.
To that end, not only have there been spaces created for Spanish speakers, AIDSWatch has also enlisted Carlitos Diaz, a Puerto Rican Orlando-based artist and HIV advocacy worker, with creating an art installation that will run for the length of the conference. Diaz has designed an ofrenda, an altar that honors ancestors who have died, that will allow attendees to also add tributes to their own loved ones who have passed.
“I think it’s always important for us to have knowledge of people who were before us,” Diaz tells POZ. “Spaces like conferences, everything is so fast. Something like an ofrenda can make a really beautiful impact — for someone to just stop and understand it.”
It’s often said that numbers tell a story. And they can: millions of dollars given, thousands of people helped. But at AIDSWatch, Flynn says, you don’t have to be a mathematician or a politician to make your mark. “No one’s expected to be a policy expert,” she says. “Your story and your personal experience are enough.” Flynn’s words bring to mind the concept of “come as you are,” something that is so crucial to the work that AIDS activists and advocates do every day.
And with AIDSWatch, which will take place in Washington, DC, beginning March 17, and for which registration is still open, that phrase means even more. Being a part of AIDSWatch can make a real difference for you, if you benefit from federal funding, as well as people you may never meet: those who depend on a voice in the room that they may never access.
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