Dear LE&RN Supporting Members and other allies,
The White House has released its Fiscal Year (FY) 2023 Budget Request to Congress. Medical research is featured heavily throughout the Biden-Harris administration’s materials and messaging. Congress is working quickly to absorb the budget request and advance the FY 2023 appropriations process with a tentative goal of passing the spending bills before the end of the calendar year.
The language below from the President’s FY 2023 Budget Request to Congress is of particular interest to the lymphatic disease (LD) and lymphedema (LE) community:
Lymphedema (LE)— LE is a chronic, debilitating, and incurable swelling that can result from damage to the lymphatic system due to surgery, cancer treatment, or injury, and that can also be inherited. An estimated 10,000,000 Americans suffer from LE. Additional research is necessary to improve our understanding of this condition and expand the treatment options available. The Committee directs NHLBI to increase support for research on LE and to establish a Research Condition Disease Categorization category for research related to lymphedema.
Action taken or to be taken
The National Institutes of Health (NIH) supports and is strongly committed to advancing a robust, trans-disciplinary portfolio of research on the lymphatic system. Established in 2002, the Trans-NIH Lymphatic Coordinating Committee (TNLCC) brings together representatives from the NIH Office of the Director and eight Institutes and Centers (ICs). The TNLCC works collaboratively utilizing IC-specific resources and expertise on lymphatic diseases and conditions to help set priorities in lymphatic research.
The lymphatic system plays a significant role in a broad spectrum of diseases and conditions, including infectious diseases, inflammation, cancer, obesity, and cardiovascular disease. One disease of the lymphatic system that has high public interest is lymphedema.
Tracking NIH annual support levels is critical to measuring progress, gaps, and opportunities in various research areas. Research, Condition, and Disease Categorization (RCDC) category development for Lymphedema—as well as a broader category for Lymphatic Research—began in March 2021. Since then, IC subject matter experts have been working to establish trans-NIH definitions for an automated algorithm for capturing relevant NIH-funded projects.
NIH anticipates that fiscal year (FY) 2021 data for these new Lymphedema and Lymphatic Research categories will be finalized and ready for public reporting in spring 2022. After FY 2021, NIH will continue to report the annual funding level for each subsequent fiscal year.
It is also significant to see that whereas the budget only seeks marginal increases to NIH, it proposes $5 billion for the new Advanced Research Project Agency for Health (ARPA-H) within NIH.
Why is ARPA-H so important to lymphatic research? Because it represents a substantial budget that is not currently committed to any project. The goal of ARPA-H is to create breakthroughs and build platforms to revolutionize prevention, treatment, and cures of diseases. Its mission is to overcome market failures. Lymphatic research, such as LE research, fit squarely in ARPA-H’s mission.
From being relatively invisible, lymphedema and lymphatic diseases are now claiming the center stage they have long deserved. This is no accident. It has taken an activist community determined to raise visibility while making their demands known. It has also taken LE&RN’s relentless team in Washington, DC who have doggedly kept our issues front and center.
We are now in talks with NIH regarding the FY 2022 Congressional mandate that directed that institution to establish a National Commission on Lymphatic Research and to create a research category for LE. If we keep up the current momentum, the next few years should result in unprecedented successes for our community.
William Repicci, LE&RN President & CEO