In 1971, The National Cancer Act sparked an intensive $100 million quest for a cure. The National Cancer Institute (NCI) medical branch chief at the time was Dr. Vincent DeVita, Jr. Although he was skeptical of the approach, 50 years and $100 billion dollars later, he has changed his mind. “Money does buy ideas when you put brilliant scientists to work,” he was recently quoted as saying. “We are not only winning the war on cancer, but the death of cancer is inevitable.”
This statement raises the question of how is it possible that we had the foresight to spend generously to cure cancer, and yet have all but ignored the debilitating, progressive, and incurable disease of lymphedema that a significant percentage of cancer survivors will acquire due to cancer treatment? Current estimates of NIH’s annual investment in all lymphatic research is approximately $25 million. An estimated $5 million of this research funding is dedicated to lymphedema research. There is only one way to interpret this. We give lip service to lymphedema, but currently there is no national commitment to finding new treatments and cures.
The FY2021 Federal Appropriations Bill called for the establishment of a National Commission to study the need for lymphatic research. NIH Director Dr. Francis Collins has not established the Commission. At the end of 2021, he retired, leaving the fate of the Commission to a newly appointed director.
We cannot say that Dr. Collins and others at NIH were not aware of the public outcry calling for a substantial investment in lymphatic and lymphedema research. Dozens of patients responded to a LE&RN campaign and sent their stories directly to Dr. Collins. Reading these stories is painful – both for the depth of suffering they reveal, and the fact that this suffering has been largely unaddressed. I greatly appreciated the invitation in July 2021 to provide a Zoom presentation to Dr. Collins about the need for lymphatic research. Yet, no patient is helped by a presentation alone. Only a significant financial commitment to fund research can address the need.
I have been told that real change will not occur until an NIH Institute Director embraces a bold commitment to defeating lymphedema. The lymphatic research community looks to Dr. Gary Gibbons, Director of NHLBI (National Heart Lung Blood Institute), to be this leader.
As we begin 2022, we look to Dr. Gibbons to support the legislative language in the FY2022 appropriations bill calling for the National Lymphatic Commission and to focus on a plan that leads to a cure for lymphedema. This community deserves nothing less and there would perhaps be no better home for a future Lymphatic Center than at NHLBI.
Dr. Gibbons, lymphedema needs a champion today akin to Dr. DeVita’s championing a cure for cancer fifty years ago. We look to you to make this a priority of your legacy.
William Repicci
President & CEO, LE&RN