Ady Barkan, health activist with ALS, dies aged 39

Andy Barkan, a well-known activist who campaigned for Medicare for all while battling the neurodegenerative disease ALS, died Wednesday in Santa Barbara, California. He was 39 years old.

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

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 life 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 the American health care system.

His profile and influence grew even as his health declined, in part because of his ability to combine 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 followed in my footsteps.”

Ohad Barkan was born on December 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 immigrated to the United States from Israel.

Mr. Barkan grew up in Cambridge, Mass., where his parents were graduate students, and later in California, where he attended Claremont High School. One of his first forays into politics was a campaign volunteer for Representative Adam Schiff, Democrat of California.

He met his wife, Rachel King, now a professor of English literature at the University of California, Santa Barbara, on the Columbia University student newspaper when they were undergraduates there.

Originally wanting to be a lawyer, Mr. Barkan clerked for a federal judge in New York after 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 his ALS diagnosis, Mr. Barkan was an energetic but relatively anonymous champion of progressive causes, including rights for immigrants and workers, ending mass incarceration and reforming the Federal Reserve. After falling ill, he became a hero of the left and a social media star. Politico call him “The Most Powerful Activist in America.”

He was adept at attracting public attention to his progressive causes. On a plane in 2017, himself faced off against Senator Jeff FlakeArizona Republican, on a GOP tax bill that he believed could lead to steep cuts to social services such as health care.

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

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

Officially founded that year, Be a Hero eventually grew to include two nonprofit organizations and a political action committee. Among other issues, the group campaigned to protect nurses during the pandemic and to replace Senate Republicans, who it said were the chamber’s “most dangerous voices” in the 2022 midterm elections.

Senator Elizabeth Warren, D-Massachusetts, said in September that she had watched Mr. Barkan “pick very good fights” over the years and that he had been instrumental in stopping Republican efforts to repeal the Affordable Care Act, President Barack Obama’s signature domestic achievement.

“Thanks to his persistence, he wasn’t just in the race,” Ms. Warren said, speaking in effect to an audience at the Franklin D. Roosevelt Presidential Library and Museum in Hyde Park, New York, where Mr. Barkan was accepting an award from the Institute Roosevelt for his activism. “He drives those races and he helped win them.”

Ahead of the 2020 presidential election, Mr. Barkan made it clear that while he endorsed the Democratic nominee, Joseph R. Biden Jr., he disagreed with the nominee on health care policy. (President Biden opposes Medicare for all, and Mr. Barkan initially endorsed Ms. Warren and later Sen. Bernie Sanders of Vermont for the party’s nomination.)

In a 2020 Zoom discussion with Mr. Barkan, Mr. Biden did not 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 in biomedical research” in the coming years.

“I think that’s not enough,” said Mr. Barkan, who until then could only speak through an electronic voice using eye gaze technology.

“Well, maybe when I’m elected, you can come and help me figure out what’s enough,” Mr. Biden told him.

“Thank you, Mr. Vice President,” Mr. Barkan replied. “I’ll take you with this.”

Mr. Barkan is survived by his parents; his wife; their children, Carl, 7, and Willow, 3, a brother, Muki Barkan; and several aunts and uncles.

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

Mr. Barkan remained relentlessly upbeat and energetic even when he was paralyzed from the head down and lost control of his breathing. In 2018, he traveled to 22 states in 40 days. Three years later, he argued in an opinion piece in The New York Times that home and community care deserved more federal funding.

“Although I am not the father I hoped to be, I am grateful for every moment with my children,” he wrote. “And anything is possible because I have 24-hour care at home.”

In a speaking at the Roosevelt Library in September, his last personal event, Mr. Barkan opened by thanking his three caregivers and saying that he and Ms. King would soon celebrate the 18th anniversary of their relationship.

“Every year has been an adventure and coming to New York this week, especially with our two perfect angels, Carl and Willow, is wonderful proof that new adventures still await us,” he told the audience from his wheelchair . “And that staying in the fight can bring handsome rewards.”

Johnny Diaz contributed to the report.

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