Members of two different panels testified before the Senate Appropriations Subcommittee on Labor, Health & Human Services last week regarding the dire state of Alzheimer’s disease funding. Although the Alzheimer’s disease hearing lasted approximately two hours, the majority of the publicity generated by this hearing focused on comedian/actor Seth Rogen’s testimony…and the number of empty chairs he testified to during the hearing.
Rogen’s testimony came at the end of the two-hour hearing, and although most chairs were empty for the entire hearing, by the time Rogen addressed the subcommittee, he was speaking to only two members of the subcommittee, Sens. Tom Harkin and Jerry Moran.
In our sound-bite, entertain-me society, I am not surprised that Rogen’s testimony stole the spotlight. A simple Google search provides multiple stories regarding his testimony and his reaction to the lack of attendance by subcommittee members. Some praised his testimony; others criticized it. Some believed he wasted an opportunity with too much comedic banter while others commended him for using his celebrity status to bring light to the growing epidemic that Alzheimer’s disease places before us. Given the fact few probably tuned in to watch the entire two-hour hearing, I count the publicity a win in the Alzheimer’s battle. If more people became aware of the need for more funding and the need to apply more pressure to the government to increase and sustain that research, then I think it’s a win. In fact, Harkin reiterated that “pressure point” at the end of the hearing when he encouraged each of us to apply pressure locally so that our government leaders pay attention to the pleas of their constituents.
As for Rogen’s testimony, he talked about his personal experience with the disease as his mother-in-law fights her losing battle with Alzheimer’s. He acknowledged his own misconceptions about the disease until he saw it for himself and said that was the impetus for starting his charity, Hilarity for Charity. Finding a way to correct those misconceptions, to make younger people take notice of a disease often thought of as just “an old person’s disease,” and to rally their support in the fight, are all reasons Rogen started the charity. He has also expanded its reach to the college community through the “Hilarity for Charity U” program. I hope to see the SIUE Chapter of PRSSA spearheading an event as part of this program sometime in the near future too.
As for the rest of the hearing, compelling testimony was given by Dr. Francis Collins, director of the National Institute of Health, who led the first panel of experts in discussing the promising research being conducted and the critical funding needed to keep that research going. This point was also poignantly emphasized by former Rep. Dennis Moore who was diagnosed with Alzheimer’s in 2011 and now serves as an Alzheimer’s Association advocate.
Many of us have similar stories to tell, and we need to keep telling them. There is power in these stories, and if we don’t use this power, then sadly, what Dr. Oz said will indeed be true. Let’s not see that happen. Instead let’s harness the power of storytelling and let our elected government officials know that they need to address this growing epidemic by allocating the funds needed to stop it. Alzheimer’s disease is the 6th leading cause of death in the United States. There is no means of prevention and no cure, and there are no survivors. We need research dollars to change this.
Let’s take a cue from Spiderman: “With great power comes great responsibility.” Let’s share our stories. Let’s all be superheroes.