George rarely betrays his fears. He works Washington with equal parts charm and authority. Members of Congress greet him like an ambassador. A few months ago, George and Trish showed up five minutes late for a meeting with Nancy Pelosi, but she welcomed them with hugs and two-cheek kisses. What was supposed to be a 15-minute meeting lasted 39.
In meetings like this, George gives the policy briefing and lays out the strategy. Trish is all tactics. “How do we get more Republicans?” she asks. Under pressure from Tea Party activists and deficit hawks, Republicans won’t sign onto any legislation that increases funding without a comparable reduction in spending elsewhere. Democrats have been more willing to sign on to legislation, but without Republican backing it’s largely a token gesture.
George tells Republicans that Alzheimer’s will bankrupt the federal government—but if you invest in a cure now, you’ll save trillions.
In truth, any number of illnesses—including heart disease, which nearly killed George—could overwhelm government health-care spending. But Alzheimer’s is the only one that’s untreatable. George is losing patience with both sides as they argue about reform of the health-care system: “Lost in this whole debate is that the traditional way we’ve driven down health-care costs in the 20th century is to cure disease! No one talks about the fact that you don’t have polio-care costs anymore.”
He has mastered not just the politics of the disease but the science. The proteins and the genes, how they interact and how they don’t. He defines the gap between the known and the unknown and looks for ways to fill it. He tracks potential drug treatments in the pipeline. He consults with public-health officials. Befriends leading researchers.
“I can e-mail with George back and forth like I do with a scientist,” says Rudy Tanzi, who co-discovered the genes that cause early-onset Alzheimer’s, the rarest form. “He’d be qualified to work in my lab.” Tanzi credits George and Trish’s efforts for galvanizing researchers and in the process “increasing public awareness about Alzheimer’s by 1,000 percent.”
Trish is the indispensable partner. The right brain to George’s left. Proof that his interest is beyond scientific or political.
It’s March 2002. Trish sits in the darkened Union Square Theatre in New York, visiting with her mother. She does this once a day. Twice if there’s a matinee. Doris Belack, a veteran TV actress, stands in for Bea Lerner. The audience thinks it’s watching a woman named Grace.
Trish’s play will survive longer off-Broadway—three months instead of one night. George’s advertising campaign helps. Some people say they see their mothers onstage.
Trish’s favorite scene comes after Grace takes the experimental drug and momentarily slips free of Alzheimer’s. She has booked a pair of cross-country tickets and planned a vacation to the Grand Canyon with her daughter, Kate. “We leave tomorrow,” she says.
Kate: “We? I’ve got an important job.”
Grace: “Writing punch lines, Katie. I mean, let’s face it, you’re not exactly Arthur Miller. Quit.”
Kate: “Quit??! There’s no way I’m going to—I’ve worked years to get . . . .”
Grace: “How many people would give anything to have their mother back? When you think about it, I’m giving you a gift.”
Trish says she wrote the play to tell people about Alzheimer’s. And that’s true. But it was also a present to herself.
She entertains notions of reviving the play again. Mostly, though, she limits her writing to blog entries—and checks. As she gets older, she thinks more than she used to about getting Alzheimer’s. She says the next big invention should be GPS tracking for personal items—the phone, the keys. She makes a more conscious note of where she puts things. But she still won’t get the genetic test.
Last year, George got a seat on an advisory council writing a national plan to combat Alzheimer’s. The council was created by the law Obama signed in 2011, the one based on George’s study group. The plan, finalized in May, will become the guiding policy strategy for the administration, which has committed to spending $156 million more on Alzheimer’s research over the next two years. It’s a trifling amount, but a start. The plan contains five goals. Number 1: Prevent and treat Alzheimer’s disease—by 2025. Without George’s urging, it wouldn’t have included a deadline. Publicly, he takes no credit. But he leaves a footprint.
As George thinks about his own mortality, he considers what Trish would do without him. She’d have plenty of money. She’d probably move closer to one of the kids. Tyler is in Chicago, teaching and coaching high-school football. Alissa is a lawyer and talent manager in Los Angeles. George thinks Trish would carry on.
It’s when he thinks about living without her that his mind goes somewhere he can’t linger. He thinks about 2020, or 2025, and sees Trish. And she’s not alone. She’s surrounded by 10 million other people. They didn’t beat the odds, either. And this drives him.
“I can’t do anything for her,” he says, “until I do it for everybody.”
Looking for help and support with Alzheimer's Disease in Washington? Consult our list of resources.
This article appears in the June 2012 issue of The Washingtonian.