Santa Barbara resident and nationally prominent health-care advocate Ady Barkan died early this week at Cottage Hospital at age 39 from the irresistible ravages of Lou Gehrig’s disease, a terminal neurological disorder also known as ALS.
A Yale-educated attorney and political activist, Barkan highlighted the struggles he and his family underwent to get the coverage he desperately needed — to make the case for single-payer insurance. In so doing, Barkan — who moved to Santa Barbara when his wife, Rachael King, got a job as an English professor with UCSB — pushed himself well past the breaking point of his vocal cords. Barkan delivered an impassioned speech to the Democratic National Convention in 2020, using a computerized voice-simulator device.
Although he and Joe Biden disagreed over national health-care policies, Barkan was emphatically unequivocal in his support for Biden and even more so in his attacks on Donald Trump. By that time, Barkan had achieved viral status as an activist, having confronted Republican Senator Jeff Flake from Arizona while the two were on a flight. Barkan urged Flake to break with his party over a massive tax cut then wending its way through Congress. That tax cut, Barkan argued, could be paid for only by cutting federal health care programs upon which he then relied in his fight with ALS.
“You can be a hero,” Barkan exhorted Flake. “You can save my life. Please.”
This exchange was captured on video, and that video would catapult Barkan to the status of activist superhero. He used this newfound prominence to form the organization Be a Hero, which he used to lobby, pressure, cajole, and exhort those seeking elected office.
Senator Flake would break with Donald Trump and the MAGA wave of his own party and retire from politics, but ultimately he did not vote as Barkan had urged.
Barkan used his high-profile persona to good advantage, challenging Democratic candidates for higher office for accepting large political donations from even larger pharmaceutical companies. If Barkan — with a law degree of Yale and a partner teaching at UCSB — had to struggle to secure the insurance benefits they needed to maximize his ability to function with a modicum of independence, his point was, the system was in dire need of reform.
Barkan was first diagnosed with ALS in 2016 at age 32. Two years later — knowing that time was short — Barkan embarked on what he dubbed the “Summer of Heroes” road trip, in which he and his crew traveled across 22 states in 40 days, confronting members of Congress about their positions on the Affordable Care Act in general and more specifically about its provisions protecting the coverage for individuals deemed to have pre-existing conditions.