What ACT UP is, why it started—and why it must rise again

by Louis Catania
By: Louis Catania, Division of Infectious Disease and medically reviewed by Ann K. Avery, MD, Infectious Disease Physician at MetroHealth Medical Center

If you’ve ever seen a protest demanding better healthcare or fair treatment for people living with HIV, chances are, ACT UP had something to do with it. 💥

This bold, unapologetic activist group changed the course of the HIV/AIDS crisis in the 1980s and ‘90s, forcing governments, pharmaceutical companies, and the public to take action.

But challenges like access to healthcare and HIV stigma still exist today, making ACT UP’s mission just as important as ever. So, what was ACT UP, and why do we need it again? Let’s dive in.

How ACT UP was born

In the 1980s, HIV/AIDS was devastating communities, especially among LGBTQ+ people, people of color, and other marginalized groups. But instead of taking urgent action, the government ignored the crisis, and pharmaceutical companies delayed life-saving treatments. 😡

People were dying, and no one in power seemed to care. That’s when ACT UP (AIDS Coalition to Unleash Power) was born. Founded in 1987 in New York City, ACT UP was a radical direct-action group that refused to stay silent while their friends and loved ones suffered. They staged protests, occupied government buildings, and demanded better medical research, affordable treatment, and policies that put people before profits. And guess what? It worked. 👏

Thanks to ACT UP’s relentless activism:

  • The FDA sped up the approval process for HIV medications. 💊
  • The U.S. government increased funding for HIV/AIDS research and care. 🏥
  • Needle exchange programs were introduced to reduce HIV transmission. 💉
  • Life-saving treatments became more accessible to those who needed them most. 💙

But just because we’ve made progress doesn’t mean the fight is over.

Why we need ACT UP today

Thanks to some pretty incredible medical advances, HIV is now very treatable, and not nearly as scary as it once was. But the epidemic isn’t over—and neither is the fight for health equity. Today, people living with HIV still face stigma, medical barriers, and systemic discrimination. We’re also seeing rollbacks in policies that protect LGBTQ+ rights, reproductive healthcare, and access to affordable treatment.

ACT UP’s legacy teaches us a powerful lesson: change doesn’t happen on its own. It happens when people come together, organize, and refuse to accept injustice. So, what can we learn from ACT UP’s playbook?

How to take action and make an impact

Every effort—big or small—moves us closer to a world where healthcare is a right, not a privilege. It starts with getting informed, speaking up, and standing with those affected by HIV stigma and healthcare inequities.

Whether you’re educating friends, joining a local advocacy group, or simply showing up for someone in need, your voice and actions matter. Change happens when people refuse to stay silent, and history has shown us that when we come together, we’re unstoppable. ACT UP’s signature phrase is: SILENCE = DEATH.

Here’s how you can start to make a difference right now:

  • Start with getting informed 📚: Commit to learning and stay up to date on HIV-related issues, healthcare policies, and local legislation. Knowledge is power!
  • Join a grassroots movement ✊: Find local advocacy groups working to protect healthcare rights, fight HIV stigma, and push for change. There are ACT UP chapters that are still active.
  • Use your voice 🗣️: Whether it’s writing to lawmakers, showing up at protests, or educating others, speaking out makes a difference.
  • Engage in community care ❤️: Sometimes activism is as simple as showing up for each other. Checking in on friends, supporting those in need, and sharing resources builds stronger, healthier communities.
  • Organize with your peers 📲: The Positive Peers app isn’t just a place for support—it can also be a way for you to find like-minded people that care about the things you care about. Whether you want to start a local advocacy group, plan a meetup, or simply find like-minded activists, join the conversation here.

The fight isn’t over—so let’s rise up

ACT UP is a great example of how activism actually works—and now, it’s our turn to carry that fight forward. Imagine what we can accomplish when we lift each other up, challenge outdated systems, and demand better for our communities.

So, let’s rise up, take a stand, and keep pushing for a future where everyone has access to the care and dignity they deserve. Because together, we have the power to make real, lasting change. 💪✨