Ady Barkan, health care activist, dies at 39

National News

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

Ady Barkan, at home in Santa Barbara, California, Sept. 17, 2019. Rozette Rago / The New York Times

By Mike Ives, New York Times Service

updated on November 2, 2023 | 10:47 AM

Ady Barkan, a well-known activist who campaigned for “Medicare for All” while struggling with the terminal neurodegenerative disease ALS, has died. He was 39.

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

Ady’s life and activism touched millions of people. Now it’s our turn to show up for him.

One thing you can do to help is make a donation to the GoFundMe set up by Ady’s close friends in support of his family. Can you help spread the word?https://t.co/AOAsoCYqDH

— Be a Hero (@BeaHero) November 2, 2023

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 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. He was initially raised 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.

Barkan initially wanted to be a lawyer and 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 ALS, Barkan was an energetic but relatively anonymous foot soldier for progressive causes like rights for immigrants and workers, ending mass incarceration and reforming the Federal Reserve. After getting sick, 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 attracting public attention to his progressive causes. On an airplane in 2017, he confronted Sen. Jeff Flake, R-Ariz., over a Republican tax bill that he believed could lead to steep cuts in social services like health care.

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

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

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

In the lead-up to the 2020 presidential election, Barkan made clear that while he endorsed the Democratic nominee, Joe Biden, 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 later Sen. Bernie Sanders of Vermont.)

Ady Barkan was a hero who made this world a better place. I’m grateful for his years of friendship and my heart is with Rachael, Willow, and Carl tonight. pic.twitter.com/TQc1CdSelu

— Elizabeth Warren (@SenWarren) November 2, 2023

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

“I think that is not enough,” said Barkan, who by that point could only speak only through a computerized voice using eye gaze technology.

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

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

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; their two children, Carl, 7, and Willow, 3; a brother, Muki Barkan; and an aunt, Deborah Schrag.

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

This article originally appeared in The New York Times.