Press Release
LE&RN Releases First-Ever National Indicator Report on Cancer-Related Lymphedema
New York, NY, June 3, 2024 – The Lymphatic Education & Research Network (LE&RN) is excited to announce the release of the first-ever National Indicator Report on Cancer-Related Lymphedema. This landmark report provides an in-depth review of the state of lymphedema knowledge and care, emphasizing the need for increased awareness, strategic policy interventions, and investments to improve patient outcomes.
"This first-ever report is crucial given the widespread prevalence of lymphedema and the significant gaps in our understanding of the disease,” said William Repicci, president and CEO of LE&RN. “With millions affected and so much more that we need to learn about lymphedema, this effort, combined with the latest federal initiatives to understand and treat lymphedema, heralds a new dawn in patient care. These advancements are vital for improving outcomes and addressing the profound physical, emotional, and financial burdens caused by lymphatic disease."
Lymphedema, particularly secondary lymphedema, represents an estimated 99% of lymphedema cases. In developed countries, the most common causes of secondary lymphedema include cancer treatments, chronic venous disease, adverse reactions to other therapeutics, and obesity. Despite its prevalence, lymphedema remains an underappreciated and underfunded public health issue.
An estimated 10 million Americans live with lymphedema. Studies have shown that Black and Hispanic women are on average 3 times more likely to develop lymphedema following breast cancer surgery, highlighting significant health disparities. Despite the significant physical, mental, and financial toll that lymphedema imposes on individuals, families, and caregivers, accurate estimates of its prevalence or annual incidence in the U.S. are lacking. Unlike most other chronic health conditions, there are no formal epidemiologic studies to validate lymphedema statistics.
Among the report’s key findings, obesity and chronic venous disease have eclipsed cancer as the leading causes of secondary lymphedema. Still, their impact on the prevalence of lymphedema is still largely unknown, indicating that lymphedema prevalence is likely under-enumerated. This issue is aggravated by the lack of consistent disease ascertainment and the undercoding of relevant lymphedema diagnostic codes in electronic health records. Delayed diagnosis and treatment lead to worse outcomes and higher healthcare costs. Lymphedema causes significant physical, emotional, and financial burdens, affecting people of all ages, sexes, races, ethnicities, and socioeconomic statuses.
"Lymphedema patients face significant challenges that can be addressed through strategic policies and investments,” continued Repicci. “We urge policymakers to prioritize improved insurance coverage to reduce out-of-pocket costs, mandate lymphatic system education in medical and nursing schools, and promote public awareness to reduce stigma and encourage early diagnosis. These actions can drastically improve patient outcomes and alleviate the burden of lymphedema."
About LE&RN
The Lymphatic Education & Research Network (LE&RN) is an internationally recognized non-profit organization founded to fight lymphatic diseases such as lymphedema, lipedema and lymphatic anomalies through education, research, and advocacy. LE&RN provides valuable educational resources, supports research initiatives, and promotes awareness worldwide. For free support in navigating the challenges of lymphatic diseases, visit the LE&RN Resource Center online or by calling 1-855-378-8163. LE&RN provides valuable educational resources, supports research initiatives, and promotes awareness worldwide.
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Press Release
LE&RN Applauds the Launch of Groundbreaking ARPA-H LIGHT Program to Innovate Lymphatic Diagnostic Solutions
Former LE&RN Special Projects Director, Dr. Kimberley Steele, to Spearhead Ambitious Federal Program to Detect and Treat Lymphatic Disease
New York, NY, May 13, 2024 – The Lymphatic Education and Research Network (LE&RN) is thrilled to announce the launch of the Advanced Research Projects Agency for Health (ARPA-H) Lymphatic Imaging, Genomics, and pHenotyping Technologies (LIGHT) program. This pioneering initiative seeks to transform the understanding and treatment of lymphatic diseases—a significant medical challenge often invisible to the naked eye.
The LIGHT program aims to develop comprehensive diagnostic tools to revolutionize the detection and treatment of lymphatic diseases within the next three to six years. Nearly 30 million Americans live with lymphedema (LE) or lipedema and face severe challenges due to the lack of standardized diagnostic tools and understanding of the lymphatic system's vital role in health.
"The launch of the LIGHT program by ARPA-H is a monumental achievement in the world of lymphatic research," said William Repicci, President & CEO of LE&RN. "Having Dr. Kimberley Steele at the helm, with her personal dedication to the cause, deep roots in LE&RN, and a profound understanding of the lymphatic system, is incredibly inspiring. This program not only promises to develop new diagnostic tools but also paves the way for future treatments that could significantly reduce the burden of lymphatic diseases."
“The lymphatic system is underappreciated, and its critical role in our health has been overlooked for far too long,” said ARPA-H LIGHT Program Manager Kimberley Steele, M.D., Ph.D. in a statement released by ARPA-H. “It takes care of waste removal, maintains our body’s fluid balance, transports fat and protein, and supports our immune system. It plays a critical role in the spread of cancer and is also an important factor in many chronic diseases, including heart disease. We are decades behind in developing diagnostic tools to assess the health of the lymphatic system. This program will change that.”
“The LIGHT program has the potential to transform lymphatic medicine from an invisible and undervalued discipline to one recognized as essential for our health,” said ARPA-H Director Renee Wegrzyn, Ph.D. “Today, people with lymphatic disease may remain misdiagnosed or undiagnosed for years; some never get a diagnosis. In the future, with a comprehensive set of tools, the journey to diagnose lymphatic dysfunction could be measured in minutes, accelerating the path to future interventions.”
The program will address the complex challenges associated with diagnosing lymphatic diseases, which are often misdiagnosed due to subtle or overlapping clinical symptoms. Current diagnostic methods, such as physical evaluations and existing imaging technologies, fail to provide detailed insights into lymphatic anatomy or function.
LIGHT will focus on three key technical areas to overcome these challenges:
- Diagnosis and monitoring through biomarker discovery.
- Development of imaging technologies that offer detailed views of the whole-body lymphatic structure and function.
- Prevention, prediction, and diagnostic confirmation through advanced genetics, epigenetics, and models of lymphatic dysfunction.
LE&RN hosted ARPA-H Lymphatics Program Webinar: Learn About This Exciting Funding Opportunity! presented by Dr. Steele on May 1 to raise awareness about this milestone opportunity. LE&RN continues to champion these efforts, driving forward the agenda for lymphatic research and advocacy.
About LE&RN
The Lymphatic Education & Research Network (LE&RN) is an internationally recognized non-profit organization founded to fight lymphatic disease and lymphedema through education, research, and advocacy. LE&RN provides valuable educational resources, supports research initiatives, and promotes awareness worldwide. For free support in navigating the challenges of lymphatic diseases, visit the LE&RN Resource Center online or by calling 1-855-378-8163.
Press Contact
Sara Ashley Sapp, Communications Director
ssapp@lymphaticnetwork.org
LE&RN seeks to highlight media coverage featuring lymphatic diseases in the news.
Scientific Reports: The Lymphedema Patient Experience within the Healthcare System: A Cross-Sectional Epidemiologic Assessment
Lymphedema is a progressive lymphatic disease that potentiates physical and psychosocial distress. Despite its impact, patients reportedly encounter lymphatic ignorance throughout the healthcare system.
HealthCentral: Why Do Doctors Know So Little About Lymphedema?
Millions of Americans, mainly women and often breast cancer survivors, live with painful and damaging swelling in their bodies. Why is this condition under-researched, underdiagnosed, and skimmed over in med school?
TODAY: What is Wendy Williams' feet disorder? What to know about lymphedema
“This is lymphedema,” Williams says in the documentary. “And I can only feel now 2% (of my feet)."
TODAY: Woman, 36, uses viral videos to share what people get wrong about lymphedema
When Nicole Faccio was born, her left arm was already noticeably swollen. “I probably gave heart attacks to a couple of people,” Faccio, 36, London-based project manager for a technology consulting firm, tells TODAY.com. Born with primary lymphedema in Puerto Rico in the 1980s, Faccio says her parents “immediately started looking for help.”
Cure: Medicare Must Now Cover Lymphedema Treatment Garments
Medicare will now cover doctor-prescribed compression supplies for patients with cancer and other conditions who are experiencing lymphedema, thanks to the Lymphedema Treatment Act.
Allure: When Is Cellulite Actually Lipedema?
You might be hearing about lipedema lately. Searches for the term “lipedema surgery” have recently spiked by 400%.