by Macey L. Henderson, J.D.
It takes more than a TV news story or a Twitter hashtag campaign to save lives. Last August’s viral ice bucket challenge did more than just improve public health awareness of an issue. Its now been reported to have made a real impact into research for a rare disease, not just for improved public education and awareness.
An estimated 5,000 persons receive a diagnosis of Amyotrophic Lateral Sclerosis (ALS) each year in the United States, with an estimated prevalence of 12,000 cases according to the Centers for Disease Control and Prevention (CDC). The prevalence rate of ALS in the U.S. is consistent with previously reported prevalence rates from ALS registries in Europe.
A year ago, Forbes reported that the ice bucket challenge had raised more than $100 million dollars. Now one year later, CBS News reported that after 17 million people rose to the challenge, including President Barack Obama, more than $220 million has been raised for medical research and treatment for ALS. In contrast, the National Institutes of Health is projected to spend $50 million on ALS research in FY 2016, which is a $2 million increase from $48 million in FY 2014 and FY 2015.
Philip Wong, a professor at Johns Hopkins who led the research team responsible for decoding the protein TDP-43, credited the ice bucket challenge with facilitating, in part, this groundbreaking research. Should future research on mice models prove successful, human clinical trials could be the next step. Should clinical trials be in the foreseeable future, they already have a funding source should they receive proper ethical and regulatory oversight and approval.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.