Ady Barkan, Health Care Activist Spurred by His Illness, Dies at 39

Mr. Barkan campaigned for Medicare for all while struggling with A.L.S., the terminal neurodegenerative disease.

THE NEW YORK TIMES, Mike Ives, November 7, 2023

Ady Barkan, a well-known activist who campaigned for Medicare for all while struggling with the neurodegenerative disease A.L.S., died on Wednesday in Santa Barbara, Calif. He was 39.

His death, at Santa Barbara Cottage Hospital, was announced by Be a Hero, the political organization he co-founded in 2018.

Mr. Barkan was diagnosed with A.L.S., or amyotrophic lateral sclerosis, in 2016, four months after the birth of his son, Carl. The disease, which causes paralysis, strikes many patients in the prime of life and often leads to death within two to five years.

As Mr. Barkan confronted his mortality, he dedicated the rest of his life to changing the American health care system.

His profile and influence grew even as his health deteriorated, in part because he had a knack for blending his personal story with calls to action. He testified before Congress, interviewed Democratic presidential candidates and spoke at the Democratic National Convention.

“That’s the paradox of my situation,” he told The New York Times in 2019. “As my voice has gotten weaker, more people have heard my message. As I lost the ability to walk, more people have followed in my footsteps.”

Ohad Barkan was born on Dec. 18, 1983, in Boston. His mother, Diana Kormos Buchwald, is a professor of the history of science at the California Institute of Technology in Pasadena. His father, Elazar Barkan, is a professor of international and public affairs at Columbia University. Both emigrated to the United States from Israel.

Mr. Barkan was raised in Cambridge, Mass., where his parents were graduate students, and later in California, where he attended high school in Claremont. One of his first forays into politics was volunteering on an election campaign for Representative Adam Schiff, Democrat of California.

He met his wife, Rachael King, who is now a professor of English literature at the University of California, Santa Barbara, at Columbia University’s student newspaper when they were undergraduates there.