Ady Barkan, health activist, dies at 39 | ET REALITY

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

His death was announced Wednesday by Be a Hero, a political organization he co-founded in 2018. Barkan died of complications from ALS around 6 p.m. 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, affects many patients in the prime of life and often causes death within two to five years.

As Barkan faced 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 declined, 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 is the paradox of my situation,” he told The New York Times in 2019. “As my voice grows weaker, more people have heard my message. As I lost the ability to walk, more people followed in my footsteps.”

Ohad Barkan was born on December 18, 1983 in Boston. He initially grew up 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 history of science at the California Institute of Technology in Pasadena. Her father, Elazar Barkan, is a professor of public and international affairs at Columbia University.

Barkan initially wanted to be a lawyer and worked for a federal judge in New York after finishing law school. 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 the ALS, Barkan was an energetic but relatively anonymous soldier for progressive causes such as immigrant and worker rights, ending mass incarceration, and reforming the Federal Reserve. After falling ill, he became a hero of the left: Politico I call it “the most powerful activist in America” and became a social media star.

He was an expert at drawing public attention to his progressive causes. On a plane in 2017, he confronted Senator Jeff FlakeRepublican from Arizona, for a Republican tax bill that he believes could lead to deep cuts in social services like health care.

“Think of the legacy you will have for my son and your grandchildren if you take your principles and turn them into vows,” Barkan said. “You can save my life.”

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

Be a Hero, which was formally founded that year, eventually grew to include two nonprofits and a political action committee.

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

In a 2020 discussion with Barkan over Zoom, Biden did not commit to doubling the budget of the National Institutes of Health, saying he would “significantly increase the budget” and ensure that “we spend another $50 billion on biomedical research.” ”over the next few years.

“I think that’s not enough,” said Barkan, who at the time could only speak through a computerized voice using gaze technology.

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

“Thank you, Mr. Vice President,” Barkan responded. “I’ll take you up on that.”

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

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

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