Protecting the Future of Lupus Research, Programs, and Care

In recent weeks, the Administration and Congress have made significant changes that threaten to negatively impact vital lupus research, drug development and public health initiatives, including the reorganization and significant staff reductions at the U.S. Department of Health and Human Services (HHS) and cutting the Lupus Research Program at the Department of Defense (DoD). 
The Lupus Foundation of America is profoundly concerned by these changes and has been working on every front—on behalf of all those impacted by lupus - to protect and strengthen these critical federal programs that support the lupus community. With funding and access to care at risk, our advocacy has never been more urgent - or more relentless.

Here are a few of the ways we’re standing with the lupus community and leading the charge:

Voices in Action

• LFA Statement: We issued a public statement calling on Congress and the Administration to preserve and strengthen essential lupus programs.  Read it here.
• Action Alert: Our current action alert empowers individuals to contact their members of Congress directly. These voices matter—Congress created these programs, and only Congress can ensure they continue. Take action now.
• 2025 National Lupus Advocacy Summit: Hundreds of lupus warriors and medical experts will head to Capitol Hill in May to speak directly with lawmakers. Those unable to attend in person can still make a powerful impact from home by joining our virtual advocacy effort. Become an advocate and help amplify our message nationwide.

On the Front Lines in Washington

We’re actively engaging with:

• Congress, through champions in the Lupus Caucus and key committees, to protect funding for research and education programs at the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC) and public health programs like Medicare, Medicaid, and more.
• Federal agencies, like the Food and Drug Administration (FDA) and Centers for Medicare and Medicaid Services (CMS) to ensure lupus-related programs stay strong and lupus treatments are accessible.
• The Administration, to influence budget and policy decisions that affect the lupus community.

Leading Powerful Coalitions

The LFA leads and participates in multiple coalitions that unite the patient advocacy community around key issues. These active coalitions represent hundreds of patient groups working together for shared goals. Together, we’re:

• Fighting for research funding at the National Institutes of Health, Centers for Disease Control and Prevention (CDC), Department of Defense (DoD) and the FDA.
  • Coalitions: NIAMS Coalition (co-led by the LFA), Research!America, Ad Hoc Group for Medical Research, Defense Health Research Consortium
• Protecting access to affordable health care and treatments.
  • Coalitions: National Health Council (board member and active committee member)
• Supporting engagement in clinical trials from all those impacted by lupus and drug development.
  • Coalitions: Alliance for a Stronger FDA
• Safeguarding Medicare and Medicaid coverage and access.
  • Coalitions: MapRx (founded and led by the LFA), Partnership to Protect Coverage
• Elevating vaccine access and other issues for immunocompromised individuals.
  • Coalitions: Immunocompromised Collaborative (co-founded and steering committee member)

Our team is leading efforts, at the table, in the meetings, and on the front lines - every single day.

Bottom line: We are doing everything in our power to protect lupus research, programs, and access to care. And we’re not backing down.

Let’s keep the momentum going - your voice and support matter now more than ever.