Ady Barkan, health care activist, dies at 39

Ady Barkan, a well-known activist who campaigned for Medicare for all while battling the terminal neurodegenerative disease ALS, has died. He was 39.

His death was announced on Wednesday by Be a Hero, a political organization he co-founded in 2018. Mr Barkan died of complications from ALS around 6pm local time at Santa Barbara Cottage Hospital in Santa Barbara, California, the group said. .

Mr. Barkan was diagnosed with ALS, 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 their lives and often leads to death within two to five years.

As Mr. Barkan faced his mortality, he dedicated the rest of his life to changing America’s health care system.

His profile and influence grew even as his health deteriorated, in part because he had a knack for combining 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 grown weaker, more people have heard my message. Because I could no longer walk, more people followed in my footsteps.”

Ohad Barkan was born on December 18, 1983 in Boston. He grew up initially in Cambridge, Massachusetts, where his parents were graduate students, and later in Claremont and Pasadena, California.

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.

Mr. Barkan initially wanted to become a lawyer and after law school clerked for a federal judge in New York. But he decided to become a full-time activist after being drawn to the Occupy Wall Street protests that began in Lower Manhattan in 2011.

Before ALS, Mr. Barkan is an energetic but relatively anonymous foot soldier for progressive causes such as immigrant and worker rights, ending mass incarceration and reforming the Federal Reserve. After he became ill, he became a hero of the left: Politico called him “the most powerful activist in America,” and he became a social media star.

He was adept at drawing public attention to his progressive causes. On a plane in 2017, he confronted Senator Jeff FlakeRepublican of Arizona, on a Republican tax bill that he believed could lead to sharp cuts to social services such as health care.

“Think of the legacy you will have for my son and your grandchildren if you translate your principles into votes,” Mr. Barkan said. “You can save my life.”

In 2018 he was arrested in his wheelchair in a Senate office building while protesting the nomination of Brett M. Kavanaugh to the Supreme Court.

Formally founded that year, Be a Hero eventually grew into two nonprofits and a political action committee.

In the run-up to the 2020 presidential election, Mr. Barkan made it clear that while he supported the Democratic nominee, Joseph R. Biden Jr., he disagreed with the candidate on health care policy. (Mr. Biden opposes Medicare for all, and Mr. Barkan initially supported Senator Elizabeth Warren of Massachusetts and later Senator Bernie Sanders of Vermont.)

In a 2020 call with Mr. Barkan over Zoom, Mr. Biden declined to commit to doubling the budget for the National Institutes of Health, saying he would “significantly increase the budget” and ensure that “we spend another $50 billion on biomedical research. ” the coming years.

“I don’t think that’s enough,” said Mr. Barkan, who at the time could only speak through a computer voice using eye-gaze technology.

“Well, if I get elected, maybe you can come and help me figure out what is enough,” Mr. Biden told him.

“Thank you, Mr. Vice President,” Mr. Barkan responded. “I will speak to you about that.”

Mr. Barkan is survived by his parents; his wife of 18 years, Rachael King, professor of English literature at the University of California, Santa Barbara; their two children, Carl, 7, and Willow, 3; a brother, Muki Barkan; and an aunt, Deborah Schrag.

In a video Last year, on the occasion of Mr. Barkan’s 39th birthday, Carl summed up his father’s life’s work with remarkable economy: “He helps make sure it’s not too expensive for people to go to the doctor.”