His face is everywhere: in TV commercials during late-night comedy shows, in the pages of Wired, and on a billboard.
Brian Kursonis, who was diagnosed last year with early-onset Alzheimer’s at age 55, is a star of the drug industry’s “Go Boldly” campaign — a sophisticated PR push, costing tens of millions a year, to highlight pharma’s commitment to develop cures for dreaded diseases.
The ads might improve pharma’s battered reputation. But behind the soft lighting and inspiring music, the patient who’s helping to anchor the campaign says his life is falling apart.
He is living alone, after a nine-year relationship broke up as his memory deteriorated. He had to give away his beloved dogs. He loves fly-fishing, but forgets how.
And he is running out of money.
Kursonis hopes he can find a way to earn a living as an advocate, but if money doesn’t come in soon, he won’t be able to make the December rent on his spartan apartment in a suburb outside of Charlotte, N.C. He fears he will soon be homeless. His best option might be a shelter.
Kursonis’s story highlights the complicated, often heartbreaking realities that compound the challenges of living with Alzheimer’s.
In the “Go Boldly” ads — funded by the drug industry group PhRMA — he’s paired with a scientist who promises to bring an Alzheimer’s drug to patients in her lifetime. Even if she succeeds, a long shot in a field that has been marked by failure after failure, Kursonis knows it will probalby be too late to help him and millions of other patients.
Now, he’s begun speaking candidly about his challenges — both on his blog and in interviews with STAT — in hopes of raising awareness and building a new career as a patient advocate.
“I want people to know, if I disappear, that at least I tried,” Kursonis said.
Kursonis’s life was a lot less complicated when PhRMA asked him last winter to film the video that became the ad. He lived with his fiancee and her two teenage daughters, girls he said he’s raised and loved like they were his own. They lived in a comfortable five-bedroom house outside Charlotte, a place they’d called home since 2010. Kursonis loved his big, beautiful backyard. The outdoor deck he’d designed himself. The nearby creek and the woods beyond, where he walked his three large dogs every day.
“I thought that was the last place I was going to live,” Kursonis said.
It can be easy, when talking to Kursonis, to overlook the fact that he has Alzheimer’s — he’s articulate, introspective, and funny.
And unlike many Alzheimer’s patients, Kursonis is well aware of what his disease is doing to his mind. He doesn’t hesitate to talk about the losses both small and large: Getting confused about which airport he’s in. Forgetting whether he’s read a thriller. Not being able to figure out how to fly-fish.
‘He’s a great advocate for patients and for the need for more research in the Alzheimer’s space.’
Kursonis had been working as a financial analyst when the first symptoms surfaced; he experienced vertigo and found himself blanking out. He left his job in 2015. His fiancee, certain there was something wrong with him, insisted on getting him tested. In May 2016 came the diagnosis: early-onset Alzheimer’s.
He fell into a depression. Then he found a new calling in advocacy. That set him down a path that has involved giving talks, telling his story to state and federal legislators, and joining the board of his local chapter of the Alzheimer’s Association.
So when a PhRMA staffer asked if he’d be willing to fly to Boston to film a video, Kursonis jumped at the chance.
Kursonis told his story to the camera for about 45 minutes, choking back tears at several points.
“Alzheimer’s wants to give you its perspective. And I choose not to accept that,” he says in one segment. In another: “Eventually they’ll have some breakthroughs, and I may not benefit from those breakthroughs, but I’m sure going to” — here he broke down, pausing for a long moment to regain his composure — “I’m going to give it my best.”
One way he’s doing that: participating in a clinical trial at Wake Forest University, testing an experimental treatment involving insulin delivered through the nasal passage.
Last May, a few months after launching the broader “Go Boldly” campaign, PhRMA aired the first television ad featuring Kursonis and Alzheimer’s researcher Samantha Budd Haeberlein, vice president of clinical development at the Cambridge biotech Biogen Inc.
PhRMA has bought $5.7 million worth of airtime to run the spot more than 1,000 times on national TV, according to iSpot.tv, a company that tracks TV ads.
“He’s a great advocate for patients and for the need for more research in the Alzheimer’s space. He’s got a really compelling story and he tells it very effectively,” said Robert Zirkelbach, PhRMA’s executive vice president of public affairs.
But in July, the ground fell out from under Kursonis’s feet. His fiancee ended their relationship and gave him two weeks to move out. His name wasn’t on the title deed of the house, so he had no say and no rights when his fiancee decided to sell it. He had to give up his dogs.
It’s not unusual for a patient like Kursonis to fall through the cracks, in part because it’s so unexpected and so deeply rattling to develop the disease so early. Fewer than 4 percent of Alzheimer’s patients — or about 200,000 Americans — experience dementia symptoms before age 65.
“Many of them find themselves isolated [without] the support from the family that they would normally have if they were older and we would expect this kind of disease to happen,” said Dr. Gabriel Léger, a neurologist at the Cleveland Clinic’s Lou Ruvo Center for Brain Health in Las Vegas who specializes in early-onset Alzheimer’s.
The all-too-common result: marital difficulties, insurance nightmares, financial hardships, and, in the toughest cases, homelessness.
Zirkelbach, the PhRMA vice president, said the group is aware of Kursonis’s difficult financial situation and looking for ways to help, but said it would be inappropriate to provide details.
When he lost his family and his home, Kursonis had only about $7,000 or $8,000 in savings. His only income each month is a $950 disability check.
He found an apartment that went for about $1,000 a month, and only half a mile from his old home, so he was less likely to get lost.
Kursonis spent more than $2,000 to create a nonprofit called Faith2Care, meant to connect overwhelmed caregivers of Alzheimer’s patients with local faith communities eager to provide support. He hopes to get grants and donations to fund the nonprofit — and pay himself a salary to run it.
Unless that funding materializes, he said, he doesn’t expect to have money for his rent. He could be homeless before Christmas.
Kursonis said he tries to push aside worries about his future.
“I can’t dwell on that,” he said. “I’m not going to be able to help anybody. That’s what gives me life.”Rebecca Robbins can be reached at rebecca.robbins
@statnews.com. Follow her on Twitter @RebeccaDRobbins. Follow Stat on Twitter @statnews.