LRA Forum for Discovery Showcases Cutting-Edge Lupus Research
December 11, 2024.
The Lupus Research Alliance (LRA) hosted its highly anticipated annual scientific conference, Forum for Discovery (FFD), November 11-13...
2022 LRA Advocacy a Success for Lupus Research
2022 LRA Advocacy a Success for Lupus Research
January 6, 2023
With the help of our advocates throughout the year, 2022 was a year of great action and accomplishment. The budget for 2023 that Congress passed at year-end includes some very important funding and recognition for lupus:
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$10 Million for the Lupus Research Program – A longstanding priority for Lupus Research Alliance has been protecting and growing the amount of funding for the Department of Defense Lupus Research Program. The spending agreement maintains the current level of $10 million for this important program. We are pleased Congress protected this funding as line items for other diseases were reduced or eliminated. However, LRA and our allies will keep making the case that increasing research funding is needed and would be hugely helpful for lupus patients and their families.
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Advancing Diversity in Clinical Trials – To develop the most effective therapies, the people participating in clinical trials must accurately reflect the population with the disease. That is why LRA has pushed for steps to increase diversity of clinical trials, including the DIVERSE Act which would allow financial assistance for trial participants to remove one significant hurdle they may face. While this legislation was not yet enacted, the spending agreement did include other important provisions intended to increase clinical trials diversity. LRA will remain engaged with the Food and Drug Administration (FDA) and drug and device sponsors to ensure trial populations accurately reflect the patient population.
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Increased Funding for the NIH – We are pleased Congress increased funding for the National Institutes of Health (NIH) by $2.5 billion above the 2022 level, because investing in basic and applied medical research is one of wisest investments we can make to improve lupus treatment.
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Important Language for the FDA – As all of you are only too aware, lupus is incredibly difficult to treat and there are too few approved therapies developed specifically for the disease. That is why LRA drafted and advocated for language identifying this challenge and urging FDA to expedite its ongoing work with the lupus community to surmount these hurdles to accelerate development of new therapies. We are pleased this language is part of the final agreement signed into law by President Biden.
The LRA cannot thank you enough for your advocacy and work on behalf of all people with lupus and their families. We are calling on you again to make sure lupus continues to be top of mind in the coming year. Learn how you can get involved in our Take It To The Hill 2023.
