WASHINGTON, DC – March 19. Lupus Research Alliance (LRA), the world’s largest private funder of lupus research, celebrates its 15th Annual Advocate for Lupus Research Day on Capitol Hill today, sounding the need for increased federal funding to further advance new lupus treatments and a cure.
Advocates representing the Lupus Research Alliance are on the Hill to focus attention on what holds the most promise for the lupus community – more research funding. Virtual advocates are amplifying the message using the Lupus Research Alliance Legislative Action Center tools to contact their legislators.
Together advocates ask Congress to provide for Fiscal Year 2020:
The Lupus Research Alliance has invested over $200 million in 500+ cutting-edge projects – significantly more than any private lupus organization in the world. The organization’s investments have afforded scientists the opportunity to pursue cutting-edge ideas that have contributed to transformative scientific advances improving lupus care today. The LRA is also the only non-government entity in lupus that bridges scientific discovery and clinical testing, propelling better treatments and a cure faster and more comprehensively than any other group.
Lupus Research Depends on Federal Funding
Still, more government support is urgently needed for lupus research. Grantees rely on the NIH to continue the work LRA’s funding allows them to begin. Despite highly promising results, rates for obtaining an NIH grant remain relatively low at 20%.[1]
Given the high demand for new research alongside the growing numbers of women treated at military health facilities, the Lupus Research Alliance also asks Congress to double its investment for the Department of Defense Lupus Research Program (LRP), as requested by the Congressional Lupus Caucus.
The LRP was established in 2017 with advocacy efforts by the LRA. Response from the research community has been overwhelming; the LRP has received $5 million each year under the Congressionally Directed Medical Research Programs in the Defense Appropriations Bill. In these first two years, 220 grant applications represented an estimated $80 million in requested funding. But with the limited budget, only 13 grants were given in the first year, and no more than 17 are expected to be funded in the second year. That leaves 190 potential lupus research breakthroughs unexplored.
Hundreds of advocates taking part in the Lupus Research Alliance’s 15th Annual Advocate for Lupus Research Day are lending their voices both in person and online, sharing stories with legislators of what people with lupus endure. The Lupus Research Alliance Legislative Action Center provides easy tools to contact senators and representatives about these important requests.
Recognition is given to the following: GSK as a Gold Sponsor; Eli Lilly and Company and Mallinckrodt Pharmaceuticals as Bronze Sponsors. Special thanks to the PA Fund for Patient Advocacy for their support and scholarship grants to bring 15 advocates to DC.
About Lupus
Lupus is a chronic, complex autoimmune disease that affects millions of people worldwide. More than 90% of people with lupus are women; lupus most often strikes during the childbearing years of 15-45. African Americans, Latinx, Asians and Native Americans are two to three times at greater risk than Caucasians. In lupus, the immune system, which is designed to protect against infection, creates antibodies that can attack any part of the body including the kidneys, brain, heart, lungs, blood, skin, and joints.
About the Lupus Research Alliance
The Lupus Research Alliance aims to transform treatment while advancing toward a cure by funding the most innovative lupus research in the world. The organization’s stringent peer review grant process fosters diverse scientific talent who are driving discovery toward better diagnostics, improved treatments and ultimately a cure for lupus. Because the Lupus Research Alliance’s Board of Directors fund all administrative and fundraising costs, 100% of all donations goes to support lupus research programs.
[1] https://report.nih.gov/nihdatabook/report/20
