Pictured above: Dr. Anthony Fauci, the Director of NIAID at NIH; LE&RN Spokesperson Kathy Bates; and LE&RN President & CEO William Repicci
On March 15, I had the honor of seeing Kathy Bates receive a Research!America award for her impact on public opinion as LE&RN’s spokesperson. At that same ceremony, I spoke with Dr. Anthony Fauci, the Director of the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health (NIH). Dr. Fauci was well-known to me by reputation. Beginning in the mid-1980s, he was the omnipresent voice in the news warning the world that the AIDS epidemic was upon us.
Dr. Fauci came to NIH in 1984, three years after the CDC first noticed clusters of patients experiencing symptoms of a new disease they at first called “gay-related immune deficiency,” or GRID. Recognizing that branding the disease with this name was likely to hinder efforts to get the broad national support necessary for addressing the epidemic, advocacy groups recommended it be changed to “acquired immune deficiency syndrome” (AIDS). Dr. Fauci recounted that since the disease was then mostly affecting gay men, there was no governmental momentum to tackle this burgeoning epidemic. As he spoke, he offered a master class on the onslaught of a disease, the obstacles to it being addressed, and the efforts that turned that disease into a national priority.
Thanks to a national commitment to fund research, within thirty years AIDS went from a death sentence to a treatable disease with vaccines looming on the horizon. But what drove that commitment? The answer to this question is the tireless AIDS advocates who refused to take “no” for an answer. Dr. Fauci talked about the effect of groups like ACT UP that employed every means available to create change. There were marches, rallies, and the AIDS quilt. Drug companies and the FDA became targets of relentless campaigns. Politicians were assailed for inaction. Activist writers took to the media and artists from every field used their creative energies to tell the story. In 1985, the Tony-winning Best Play on Broadway was the AIDS-themed drama As Is. America was waking up to an unfolding tragedy in which no family was untouched. Hundreds of millions of research dollars followed and AIDS was wrestled to its knees.
With a Lymphedemic™ at hand, we have a blueprint of how the fight against a disease is won. Those directly impacted by lymphedema and lymphatic diseases number in the tens of millions. Yet, we have too often been silent and overlooked. Our movement will advance in direct proportion to the patient-driven community that spearheads it. And there are steps that we, as a community, must take now to drive the national commitment we need.
First, we have begun to use the acronym LE. The difficulty of creating change is compounded if people can’t remember the name of the disease—and LE is a disease.
Second, we must get political. LE&RN has written a petition to fight for a $70M U.S. Senate appropriation for LE research and a petition requesting that the World Health Organization designate “Lymphedema: Awareness & Cures” as its 2018 World Health Day Campaign. You and everyone you know must sign these petitions. Our strength is in numbers.
Third, “come out” one and all. You can’t engage your loved ones in this fight by denying you have a lymphatic disease. If not for yourself, think of all those you could be helping by raising your voice.
Fourth, we need leaders. Join or form a LE&RN State Chapter or International Chapter, and drive our message home to every politician around the world. Sponsor events so that others can find a community for support and where their voices can be heard.
Finally, we must not despair. The movement needs your relentless energy if monumental change is to follow.
You are not alone. We will build on each other’s strength and we will succeed. I am heartened by the unrelenting advocates I find at every turn. The movement is well on its way, and now is the time to raise the bar.
President & CEO, LE&RN