Ady Barkan, the well-known activist who campaigned for Medicare for all while battling 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. Mr. Barkan died of complications from ALS at about 6 p.m. local time at Santa Barbara Cottage Hospital in Santa Barbara, California, the group said.
In 2016, four months after the birth of his son Carl, Mr. Barkan was diagnosed with ALS, or amyotrophic lateral sclerosis. The disease, which causes paralysis, affects many patients in their prime and often leads to death within two to five years.
As Mr. Barkan faced his mortality, he devoted 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 the ability to combine his personal story with calls to action. He has testified before Congress, interviewed Democratic presidential candidates and spoken at the Democratic National Convention.
“That’s the paradox of my situation,” he told The New York Times in 2019. “As my voice got weaker, more people heard my message. As I lost the ability to walk, more and more people followed in my footsteps.”
Ohad Barkan was born on December 18, 1983 in Boston. He was initially raised in Cambridge, Mass., 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 be 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 was an energetic but relatively anonymous champion of 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 called him “the most powerful activist in America” and became a social media star.
He was adept at drawing public attention to his progressive causes. On the plane in 2017 he confronted Senator Jeff FlakeRepublican from Arizona, over a Republican tax bill that he believed could lead to steep cuts to 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 votes,” Mr. Barkan said. “You can save my life.”
2018 was arrested in a wheelchair in the 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 into two nonprofits and a political action committee.
On the eve of the 2020 presidential elections. 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 endorsed Sen. Elizabeth Warren of Massachusetts and later Sen. Bernie Sanders of Vermont.)
In a 2020 discussion with Mr. Barkan on Zoom, Mr. Biden would 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 on biomedical research” over the next few years. .
“I don’t think it’s enough,” said Mr. Barkan, who until then could only speak through a computerized voice using eye-to-eye 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,” replied Mr. Barkan. “I’ll understand 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; brother Muki Barkan; and aunt, Deborah Schrag.
U video Last year at Mr. Barkan’s 39th birthday celebration, Carl summed up his father’s life’s work with remarkable economy: “He helps keep people from being too expensive to go to the doctor.”