January 2, 2024

The national lupus community lost a passionate advocate with the passing of former Congresswoman Eddie Bernice Johnson (D-TX).

As many have shared, Congresswoman Johnson was a woman of significant “firsts” – first Black head psychiatric nurse at the Dallas VA hospital, first nurse elected to Congress, first African American and first woman to chair the House Science, Space and Technology Committee. And as a born trailblazer, she used her strong voice to advocate for lupus patients and their families, helping to establish the first Congressional Lupus Caucus in 2015.

Congresswoman Johnson’s clinical background and natural empathy led her to establish – in partnership with the Lupus Research Alliance and others –the Lupus Research Program under the Department of Defense Congressionally Directed Medical Research Program. She led the Congressional Lupus Caucus, which continues to advocate for robust lupus research funding.  She also chaired the Congressional Black Caucus which pursues a policy agenda that includes eliminating racial health disparities – a critical goal with a disease like lupus that disproportionately affects people of color in both prevalence and severity.

“Congresswoman Eddie Bernice Johnson’s decades of service leave a legacy upon which to build a future of better lupus treatment for people most affected by the disease,” commented Albert T. Roy, President and CEO of the Lupus Research Alliance. “The research we fund at the LRA is advanced by grants through the federal Lupus Research Program, further propelling discovery toward much-needed new treatment options. Her work in Congress also promises to ensure affordable access to those therapies once determined to be safe and effective.”

“The most meaningful way we can honor Congresswoman Johnson’s life is to keep working to realize the vision we shared for a future where every person with lupus can get the right treatment they need to live their best life.”