Culminating more than a year of advocacy by the Lupus Foundation of America and others, President Donald Trump has signed into law provisions for nearly $19 million in new funding for lupus research and education.
The funding bills, which included $41.7 billion for the National Institutes of Health (NIH), were recently passed by both legislative chambers. The signing marks the first time that more than $15 million for lupus-specific programs has been appropriated by Congress in a single year. It tops the previous high by more than $4 million.
The foundation, in a press release, said that with this signing the government is fully funded for fiscal year 2020, and that lupus programs at the Centers for Disease Control and Prevention (CDC), Department of Defense, Office of Minority Health, and NIH can be expanded.
“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,” the LFA added.
The LFA got what it lobbied for, including an additional $1 million for the CDC’s National Lupus Patient Registry, $250,000 more for the Office of Minority Health’s lupus program, $2.6 billion for the NIH, and a doubling of funding to $10 million for the U.S. Department of Defense’s Lupus Research Program.
“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,” the organization said.
Lupus advocates began pressing their case on Capitol Hill more than a year ago. They worked to ensure legislators’ awareness of lupus and its effects, and what specific funding was needed. At the 2019 National Lupus Advocacy Summit in Washington, D.C., in March, more than 350 advocates from 33 states met with congressional members. More than 1,300 advocates also sent lawmakers roughly 4,400 emails. Those efforts were followed by meetings and other behind-the-scenes activity.
“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 success next year and beyond,” the LFA said.
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