Health care activist Ady Barkan dies at 39

Ady Barkan, a well-known activist who campaigned for Medicare for All while battling ALS, a terminal neurodegenerative disease, 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 around 6 p.m. local time at Santa Barbara Cottage Hospital in Santa Barbara, in 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 life and often results in 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 deteriorated, in part because he had a gift for blending 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 grew weaker, more and 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 grew up first in Cambridge, Massachusetts, where his parents were graduate students, and then 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. His father, Elazar Barkan, is a professor of international and public affairs at Columbia University.

Mr. Barkan initially wanted to become a lawyer and worked 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, Mr. Barkan was 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 falling ill, he became a left-wing hero: Politico called him America’s most powerful activist and he became a social media star.

He knew how to attract public attention to his progressive causes. On a plane in 2017, he confronted Sen. Jeff Flake, Republican of Arizona, over a Republican tax bill that he said could lead to deep cuts to social services like health care.

Think of the legacy you will leave for my son and your grandchildren if you take your principles and turn them 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 Brett M. Kavanaugh’s nomination to the Supreme Court.

Be a Hero, which was officially founded that year, eventually grew to include two nonprofit organizations and a political action committee.

As the 2020 presidential election approaches, Mr. Barkan has made clear that while he supports the Democratic nominee, Joseph R. Biden Jr., he disagrees with the candidate on the policies of health. (Mr. Biden opposes Medicare for All, and Mr. Barkan initially supported Sen. Elizabeth Warren of Massachusetts and then Sen. Bernie Sanders of Vermont.)

In a 2020 discussion with Mr. Barkan about Zoom, Mr. Biden did not commit to doubling the National Institutes of Health’s budget, saying he would significantly increase the budget and ensure that we spend An additional $50 billion for biomedical research over the next few years. several years.

I think that’s not enough, said Mr. Barkan, who at this point could only speak through a computerized voice using gaze technology.

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

Thank you, Mr. Vice President, replied Mr. Barkan. I’m going to talk to you about it.

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, celebrating Mr. Barkan’s 39th birthday, 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 .