President Signs Nearly $19 Million in Lupus Funding Into Law

Today’s victory is the culmination of over a year of advocacy by the Lupus Foundation of America and our dedicated advocates.

Moments ago, President Donald J. Trump signed into law two funding packages providing nearly $19 million in new funding for lupus-specific research and education programs, as well an additional $41.7 billion in funding for the National Institutes of Health (NIH). The funding bills were passed by the U.S. House of Representatives on Tuesday, and the Senate followed suit on Thursday. 

This is the first time in U.S. history that Congress has appropriated more than $15 million for lupus-specific programs in a single year – beating the previous high by more than $4 million.

With President Trump’s signature today, the government is fully funded for fiscal year 2020, and lupus programs at the Centers for Disease Control and Prevention (CDC), Department of Defense (DoD), Office of Minority Health (OMH), and NIH can continue and enhance their critical work. These programs are helping us better understand lupus and how it affects those living with it, and accelerating the search for more safe and effective treatments.

Notably, Congress increased funding for all of the programs that we advocated for on Capitol Hill this year! This includes an additional $1 million for the National Lupus Patient Registry at CDC, a doubling of funding to $10 million for the DoD’s Lupus Research Program, an additional $250,000 for the lupus program at the Office of Minority Health, and a $2.6 billion boost for the NIH. For complete details about these programs and the spending packages passed today, read our earlier post.

The Road to Today

Today is a monumental day in lupus advocacy, and a victory of this magnitude would not be possible without the daily support of lupus advocates and their commitment to raising their voices and educating their members of Congress about the disease. 

While things moved quickly on Capitol Hill this week, the fight to secure this funding actually began more than a year ago, immediately after funding for fiscal year 2019 was completed. Since then, we have been in constant contact with Appropriations Committee staff and our champions in the Congressional Lupus Caucus about lupus funding for fiscal year 2020. 

Every conversation we had was supported by lupus advocates who never stopped contacting their members of Congress to tell the lupus story and build relationships with members and their staff. Whether in person or online, lupus advocates illustrated the debilitating nature of this disease, and made clear that Congress needed to do more to move us closer to a world without lupus.

The voices of lupus advocates were loud every day, but never were they louder than at the 2019 National Lupus Advocacy Summit, the largest lupus advocacy event in the nation. More than 350 advocates from 33 states came to Washington, DC to meet with their members of Congress and urge them to join our fight, and thousands more participated online. In one single day, lupus advocates held 172 in-person meetings, and online, more than 1,300 advocates sent over 4,400 emails to their members of Congress.

On March 5, 2019, 518 of 535 congressional offices – 96.8% – heard from a lupus advocate about the programs funded today. 

Behind the scenes, we worked with the Congressional Lupus Caucus to draft a Dear Colleague letter for Representatives to show their support for these programs (61 would sign) and assisted Appropriations Committee staff in drafting report language directing CDC and OMH on how to use the funds they would ultimately receive.

In June, the House of Representatives responded to lupus advocates by approving legislation providing $17.5 million for lupus-specific programs and $41.1 billion for the NIH. The Lupus Foundation of America and our advocates saw an opportunity for more, however, and spent the August recess meeting with their members of Congress to thank them for their support and ask them to increase funding levels even more.

Off the strength of those August meetings and the previous outreach from lupus advocates, in September the Senate released their draft Labor, Health and Human Services, and Education spending bill, which included $8.5 million for the National Lupus Patient Registry at the CDC, an increase of $1 million over the House’s $7.5 million. The Senate also provided an additional $250,000 specifically for OMH’s lupus program, the only increase the Senate included in OMH’s entire budget. While the Senate never acted on the bill, both increases were carried through to the funding package signed by the president today.

Without lupus advocates raising their voice at every opportunity we provided, and finding their own opportunities, successes like today’s never could have happened. We are grateful to every lupus advocate for their tireless work over the past year, and we hope this victory can serve as motivation to continue the fight as we strive for even bigger successes next year and beyond.

Next Steps

We have already begun working to secure even more funding for lupus in fiscal year 2021! Sign up as an advocate to receive updates and alerts related to all of our policy priorities, and consider attending the 2020 National Lupus Advocacy Summit this March in Washington, DC. Limited scholarships are available.