Lupus, Advocacy, and the Push for Health Equity: Why Our Voices Matter

For those of us living with lupus, healthcare is personal. From seeing specialists to managing medications, we know how much these decisions affect our lives. But beyond our individual experiences, a bigger conversation is happening—one about health equity and why it’s so important that all patients, especially those from minority and underserved communities, have a say in their care.

Lupus affects women and people of color at higher rates, yet many of us struggle to access care, find the right treatments, or even be included in research. While clinical trials often lack diversity, health equity is about more than research.¹ It’s also about who shapes healthcare policies, how treatments are developed, and whether patient voices are truly heard.

And that’s where we come in.

We All Have a Role in Advocacy

Health equity isn’t just something for policymakers or researchers to figure out—it’s something we all have a stake in. Advocacy can take many forms. Some of us feel comfortable sharing our stories and speaking out publicly. Others may prefer to support the cause in quieter ways, like spreading awareness, connecting with organizations, or mentoring fellow patients. Every role matters.

By stepping forward—whether in the spotlight or behind the scenes—we help create change. But first, we must recognize that our voices belong in this conversation.

Why Health Equity Matters

Lupus is complex, affecting each of us differently. Yet, many treatments follow a one-size-fits-all approach because research hasn’t always included diverse patients. Women of color, for example, are often underrepresented in clinical trials, meaning some medications may not be tested for the very people who need them most.

But health equity isn’t just about research—it’s about ensuring lupus patients have access to quality care, affordable treatments, and a seat at the table in decision-making spaces. When pharmaceutical companies, researchers, and healthcare organizations partner with patient advocates, they make better decisions that truly meet our needs.

How We Can Take Action

Even as policies shift, we have the power to push for meaningful change. Here’s how we can get involved in ways that fit our comfort levels:

• Share Our Stories:

  Raising awareness about lupus and the challenges we face helps decision-makers understand real patient needs. Whether on social media, through advocacy groups, or in conversations with healthcare providers, every shared experience adds to the movement.

• Engage in Research through Patient Panels:

  Many lupus patients hesitate to participate in research, but increasing diverse representation in clinical trials ensures that treatments work for all of us. Joining patient advisory boards also gives us a direct voice in shaping research and healthcare policies.

• Push for Better Access to Care:

  Many lupus patients struggle to get a diagnosis, see a specialist, or afford medications. We can support change by signing petitions, joining advocacy efforts, and supporting policies that improve access to care.

• Hold Healthcare Companies Accountable:

  More organizations are committing to diversity in research and treatment development—but accountability matters. Asking questions like, "Who is included in this research? How are lupus treatments designed to serve all patients?," keeps the focus on real progress.

Together, We Create Change

Change doesn’t happen overnight, but every action—big or small—moves us closer to a more equitable healthcare system. The lupus community is powerful, and when we come together, we make a real impact.

Advocacy isn’t just for a select few—it’s for all of us. Some will lead from the front, speaking at conferences or sharing their stories publicly. Others will work behind the scenes, writing letters to lawmakers, supporting patient groups, or guiding newly diagnosed patients.

Every role matters. Every voice strengthens the movement.