NIH video below. Presentation by LE&RN President & CEO William Repicci begins at about the 16:00 mark. Transcript is provided beneath the video.
NIH-OSTP listening session on Advanced Research Project Agency—Health (ARPA-H) with focus on allergies and infectious diseases, and global health
Meeting 8: August 5, 10:30-11:45am ET
Open to invited stakeholders for comments NIH Director Dr. Francis Collins introduced each speaker
William Repicci, President and CEO, Lymphatic Education and Research Network (4 min) (Spotlight: Repicci)
Dr. Bruce Roberts, Chief Research Science & Innovation Officer Food Allergy Research and Education (4 min) (Spotlight: Roberts)
Dr Stephen Morrison, Senior Vice President and Director of Global Health Policy Center, Center for Strategic and International Studies (4 min) (Spotlight: Morrsison)
Dr. Judy Wasserheit, Founding Board Chair, Research Committee Co-Chair, Consortium of Universities for Global Health (4 min) (Spotlight: Wasserheit)
Jamie Bay Nishi, Director, Global Health Technologies Coalition (4 min) (Spotlight: Nishi)
Suraj Madoori, US and Global Health Policy Director (Treatment Action Group), Research Working Group of the Federal AIDS Policy Partnership (4 min) (Spotlight: Madoori)
Presentation by William Repicci, President & CEO of Lymphatic Education & Research Network
Dear Dr. Collins,
First, thank you for your tireless efforts during this pandemic that still rages across the globe. And on behalf of LE&RN and myself, thank you for this honor of presenting a case today on behalf of hundreds of millions worldwide living with lymphatic diseases.
I send you best wishes from LE&RN Spokesperson and actress Kathy Bates who fondly recalls our talks with you and Dr. Fauci at the Research America awards dinner the year she was honored. That event also provided the opportunity of us to bring our case directly to President Biden who keynoted the event.
I thought I would begin my remarks today by making the case for why the time has come for significant investment in lymphatic research. I planned to describe the physical suffering of those with progressive, debilitating, deforming and incurable diseases like lymphedema and lipedema: the hopelessness, psycho-social trauma, and the incredible medical cost and loss of quality of life. I thought to tell you about the robust community of hundreds of lymphatic researchers prepared to give us tomorrow’s breakthroughs, and to bring to you the lament of the medical community that feels their hands are tied in treating lymphatic diseases without research providing them treatments to offer patients. However, looking at the esteemed group here today it occurs to me that you are already prepared to make bold moves. As such, I simply offer myself as a partner in this quest.
I recall my first lymphatic research conference a decade ago. There was a palpable excitement among researchers who saw themselves as explorers who had landed on a previously undiscovered island full of riches. Here was a system playing a significant role in a continuum of diseases such as cancer metastases, diabetes, heart disease, Rheumatoid arthritis, obesity, AIDS and a host of immunological diseases, with Alzheimer’s disease and multiple sclerosis now added to that list.
And then there were with an estimated 10 million Americans and 250 million worldwide living with lymphedema. Regardless of whether the onset of LE was due to cancer, physical trauma, genetic or hereditary factors, or lymphatic filariasis, the treatments were the same: compression therapies and therapeutic massage.
There is still not a single drug on the market to treat LE. Nor is there a major pharma company preparing to do so as they as they look to NIH for the necessary pathbreaking fundamental research. There are now surgeries such as lymph node transfer, LVA and debulking. However, insurers call these surgeries “cosmetic” and deny coverage due to a lack of research proving their efficacy. Now, surgeons believe they can prevent LE by offering these surgeries prophylactically.
With NIH’s new five-year strategic plan focused on enhancing women’s health, you will not find diseases more aligned with your goals than LE and LI.
Dr. Fauci recounted to me how NIH’s investment of $3B a year helped make AIDS a treatable disease. In 2015, an informal meeting with staffers at NIH’s Lymphatic Symposium determined that a minimum of $75M a year in lymphatic research funding was needed to truly begin advancing the field. Currently, we estimate that NIH is allocating approximately $5m a year in LE research grants, and investing a total of $25M for all LD research
I dream of a Manhattan Project-like effort to find new treatments and cures for LDs. I grow hopeful envisioning NIH creating a National Lymphatic Commission. I ask that you consider establishing a Lymphatic Center focused on the broad continuum of lymphatic research across all NIH Institutes. I ask that NIH then consider funding that Center with $100M annually for grant awards, with up to $50M of this dedicated to finding a cure for LE.
Dr. Collins, we look to you to catapult lymphatic research into the 21st Century.