Ady Barkan, activist who fought for health care

Ady Barkan, an activist who fought for access to universal health care, improved home health support and other reforms to America’s health care system as he suffered from the degenerative disease ALS, died Nov. 1 at a hospital in Santa Barbara, Calif. He was 39.

The cause was complications from the medical condition, sometimes known as Lou Gehrig’s disease, that had steadily robbed him of his ability to move and speak, said Liz Jaff, who co-founded the political advocacy group Be a Hero with Barkan.

A Yale-trained lawyer, Barkan initially worked as an activist to improve housing for low-income Americans, strengthen protections for immigrants and other progressive causes.

The publication Politico in 2016 named Barkan, then 32, among the most influential people in American politics for his efforts to reform the country’s banking system, with Barkan arguing that the Federal Reserve did not appropriately reflect the needs of working people.

That same year, he was diagnosed with the terminal disease ALS, or amyotrophic lateral sclerosis, forcing Barkan into what he described as a personal reckoning. But he quickly realized that he could utilize his illness to force policymakers, who often shrugged off activists’ pleas, to engage with him on discussions about health care reforms.

As Republicans in December 2017 debated whether to pass a bill to cut taxes, Barkan confronted then-Sen. Jeff Flake (R-Ariz.) and warned him that the party’s legislation would trigger automatic cuts to federal health programs that Barkan said would lead to unsustainable medical bills for ALS patients and Americans with other serious health conditions.

“You can be an American hero,” Barkan beseeched Flake, as fellow activist Jaff held the camera to capture the conversation. “You can save my life.”

Flake and other Republicans said Barkan’s claims about the bill’s impact were unfounded because Congress would take action to avert the health care cuts, and the party passed the legislation with no Democratic votes.

But Barkan’s video received national attention, transforming him overnight into a prominent commentator on healthcare causes, and the rallying cry he uttered — be a hero — became the name of the new organization that he and Jaff co-founded in 2018.