Fact vs Fiction: Clinical Trials Need Participants
So there was actor William Shatner playing Denny Crane in the series finale of “Boston Legal” this week—the Denny Crane who, along with his cast of characters, was always peculiar and pompous, and then who scriptwriters decided to give a diagnosis of early-stage Alzheimer’s disease.
In TV-land, this character isn’t the first and won’t be the last to have Alzheimer’s disease. It makes sense: it poses a good storyline, and it hits home with viewers. And it goes a long way toward raising awareness of the disease. The hope is that the disease is portrayed accurately and the storyline includes appropriate content.
Our message needs to get out in multiple forms, and Denny became the messenger here. In this instance, we’re talking millions and millions of viewers, lots of press. Evidence of this, I don’t watch the show, but I’ve heard or read about it in the media and online (including other posts here). That’s awareness-raising.
So as Alzheimer’s disease and other brain disorders weave in and out of TV and movie scripts, what makes the Boston Legal plot stand out is its spin: Denny made a plea to the Supreme Court to acquire a non-FDA approved drug, Dimebon, to slow the progression of his disease.
But let’s separate fact from fiction here.
Fact: Dimebon is an experimental drug that is involved in clinical trials to treat Alzheimer’s disease; in fact, it is involved in a pivotal Phase 3, or final, phase.
Fact: Spots are still open for the Dimebon trial, which in total is enrolling 525 individuals with mild to moderate Alzheimer’s disease at sites in the United States, Europe and South America. Denny could have gone to the University of Rochester (NY), for one; there’s reportedly room for five to ten more participants there.
Despite the embellishment to achieve the storyline, what I’m excited about is that the quirky Denny Crane gives us the opportunity to jumpstart a dialogue about clinical trials. Trials for countless drugs, including Alzheimer’s disease, are searching for participants. Only by having these participants and conducting these trials will we move the ball farther along the field. Searching for the cure, getting that touchdown, involves human beings playing their part.
That doesn’t mean to say anyone should blindly sign up. Engaging in a trial is a serious and thoughtful commitment. It involves coming to the decision that this is the right step for you, and at the right point in the disease process. Making the commitment should involve discussions with your family, your healthcare provider and those in charge of the trial. It means knowing the facts. How much time is involved? Will you get the experimental drug or a placebo? What are the risks? Ask and ask some more. Before volunteering, participants must learn about the details of a study and give informed consent.
So as Denny and the rest of the crew at the fictitious law firm of Crane, Poole & Schmidt end their Monday night run on ABC, hopefully, the final storyline will open a new chapter on clinical trial participation.