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Ady Barkan, activist who championed health care reform, dies of ALS at 39

Ady Barkan speaks at the premiere of his documentary <em>Not Going Quietly</em> in August 2021 in Los Angeles.
Vivien Killilea
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Getty Images for Greenwich Entertainment
Ady Barkan speaks at the premiere of his documentary Not Going Quietly in August 2021 in Los Angeles.

Ady Barkan, the progressive attorney and activist who grew to prominence campaigning for health care reform after being diagnosed with ALS, has died of complications of the disease. He was 39.

His death was announced on Wednesday by Rachael King, his partner of 18 years, as well as Be A Hero, the political organization he co-founded in 2018.

Barkan was a lifelong social justice advocate who championed a variety of causes, from expanding worker rights to reforming the Federal Reserve. After he was diagnosed with the terminal neurological disease ALS (amyotrophic lateral sclerosis) in 2016 — just months after the birth of his first child — he turned his focus towards improving Americans' access to health care.

"The knowledge that I was dying was terrible, but dealing with my insurance company was even worse," Barkan said in the trailer for Not Going Quietly, a 2021 documentary about his life and activism. "I wanted to spend every moment I had left with Rachael and Carl, but then Congress came after our health care. I couldn't stay quiet any longer."

Barkan went viral in 2017 after he confronted then-Sen. Jeff Flake, R-Ariz., about the GOP tax bill while on an airplane — on his way home from protesting that very legislation in D.C. Videos of the 11-minute exchange show Barkan urging Flake to "be an American hero" by voting no on legislation that would slash billions in Medicare funding and limit access to health care.

That conversation didn't change Flake's vote. But it did launch Barkan into the spotlight, and he amplified his advocacy for health care as a human right and other progressive causes in the years that followed.

Barkan spearheaded the Be A Hero campaign, traveling across the country to encourage voters to back progressive candidates in the 2018 midterm elections. He also co-founded the organization by the same name, which has campaigned for a variety of causes and now spans nonprofits and a political action committee. That same year he was also arrested in the U.S. Capitol for protesting the nomination of now-Supreme Court Justice Brett Kavanaugh.

Even after losing the ability to speak, Barkan testified (through a computer system that tracked his eye movements) at Congress' first-ever hearing on Medicare for All in 2019. He interviewed Democratic presidential candidates in 2020 — including President Biden, whom he ultimately endorsed — and spoke at the 2020 Democratic National Convention.

Politico described Barkan as "the most powerful activist in America." He was declared one of TIME's most influential people in 2020. Sen. Elizabeth Warren, D-Mass., wrote in the accompanying blurb that "Ady and the movement he has behind him bring us closer than we have ever been to making health care in America a basic human right."

Barkan told NPR in 2022 that he learned early on that his ALS compelled people to listen to him with "newfound attentiveness."

"The paradox of my situation has been that as ALS has made my voice weaker, more people have heard my message," he said. "As I've lost the ability to walk, more people have followed in my footsteps."

Jamila Headley, the co-executive director of Be A Hero, remembered Barkan in a lengthy statement as a "brilliant strategist, an incisive communicator, and powerful advocate" whose power was "rooted most of all in his humanity."

She said in his activism and his humanity, Barkan became a "real-life hero" to millions of people navigating their own health challenges and the shortcomings of the U.S. healthcare system — and vowed to continue that work.

"We've always known we wouldn't have enough time with him," she added. "While we don't know how to imagine a world without him learning, strategizing, fighting, and laughing alongside us, we do know that through Be A Hero and the movement of patients we are building, Ady's work will live on."

Barkan's advocacy continued even as his health deteriorated

Barkan addresses the livestream of the virtual Democratic National Convention in August 2020.
Handout / DNCC via Getty Images
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DNCC via Getty Images
Barkan addresses the livestream of the virtual Democratic National Convention in August 2020.

Barkan, who was born to Israeli immigrants in Boston and raised in California, decided to become a lawyer for the poor and disadvantaged after reading To Kill A Mockingbird as a kid, as he told Politico in 2019.

The Columbia University and Yale Law School graduate spent time clerking for a federal judge in New York and working for the immigrant-led organization Make the Road New York, representing workers seeking to recover unpaid wages and improve working conditions.

The 2011 Occupy Wall Street movement inspired Barkan to pursue activism full-time. He gained a reputation as an effective organizer during his tenure at the Center for Popular Democracy, where he went on to launch several programs, includingthe Fed Up and Be A Hero campaigns.

The 2014 Fed Up campaign — which first gained Barkan national attention — pushed for the Federal Reserve Board to focus on full employment. Dean Baker, the co-founder of the Center for Economic and Policy Research, wrote in a tribute that Barkan made the case to then-chair and current Treasury Secretary Janet Yellen, who took it seriously.

"This shift in Fed policy towards promoting full employment, and not just obsessing about inflation, was a remarkable victory," Baker wrote. "It improved the lives of tens of millions of workers."

Barkan married King — whom he met in college — in 2015, and their son Carl was born in 2016 (their daughter Willow was born in 2019).

Four months later, after a bout of stiffness in his left hand, Barkan was diagnosed with ALS, at the age of 32. The average age at diagnosis is 55, and life expectancy after diagnosis is two to five years.

Barkan chose to use his remaining time to fight for lasting health care reform, even as he lost the ability to move and speak.

"Organizing is about using the resources at your disposal to build the power you need to accomplish your goals, and ALS is unfortunately very much at my disposal," he told NPR.

He said he found great joy and meaning in the struggle for justice, even as ALS paralyzed his body.

"Being part of the movement has given me purpose, a community and the chance to nudge our society in the right direction," he said. "It's allowed me to transcend my dying body and find personal liberation. And I honestly don't think those things are just for me."

Both Headley and King emphasized the important role that Barkan's team of 24/7 caregivers played in letting him continue to live at home with his family, with King writing that "everyone should have that chance."

Headley said Barkan's family was "the center of Ady's universe," saying it was his love for them — and desire to continue to be a partner and father — that "animated his own fight for access to home care."

Barkan told NPR that he and King had agreed to film the 2021 documentary because they thought it would one day be a "good memento" for their kids.

"Of course, Carl and Willow know me as their silly dad," he said. "But I also want them to be able to know about my work and my politics and how their existence motivated me to fight for a better world."

Progressive lawmakers are honoring his legacy

Barkan speaks at a rally organized by House Minority Leader Nancy Pelosi at the U.S. Capitol in December 2017.
Chip Somodevilla / Getty Images
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Getty Images
Barkan speaks at a rally organized by House Minority Leader Nancy Pelosi at the U.S. Capitol in December 2017.

Progressive lawmakers, many of whom got to know Barkan well over the years, paid tribute to him on Thursday, calling him a hero and pledging to continue his fight for health care reform.

The Congressional Progressive Caucus said in a tweet that "the progressive movement has lost a hero. Ady Barkan accomplished more in his too-short time here than most do many lifetimes over."

Caucus chair Rep. Pramila Jayapal, D-Wash., issued a separate statement praising Barkan's lifetime of advocacy.

"His commanding presence would not be denied and his relentless pursuit of justice could not be ignored — not by a senator on an airplane, a presidential candidate, or the countless activists he inspired daily," she wrote.

Warren called Barkan a hero who made the world a better place and thanked him for his years of friendship. She wrote in her 2020 TIME profile of him that she kept a photo of the two of them — and Carl — on her bookshelf "as a constant reminder that none of us knows what could happen tomorrow, so we embrace life fully as it comes, and we make purpose where we can."

Vermont Sen. Bernie Sanders described Barkan as an inspiration, saying there are "very few people in this country who have done more to make health care a human right."

Former House Speaker Nancy Pelosi, D-Calif., said in a statement that "everyone who had the honor of being with Ady knew that we were in the presence of greatness: a relentless organizer and beloved leader with indomitable courage."

She said she had told Barkan that he was her hero when she saw him accept the Roosevelt Institute's Freedom From Want award in September, which was reportedly his last in-person appearance.

It's not just lawmakers who have been moved by Barkan's activism. Headley, of Be A Hero, wrote that he "inspired many of us to join the fight for universal access to life-saving and life-giving health care."

The organization is asking people to help celebrate Barkan's life and impact by submitting their own stories of what he meant to them.

Copyright 2023 NPR. To see more, visit https://www.npr.org.

Corrected: November 1, 2023 at 10:00 PM MDT
A previous version of this story said Barkan's death was announced on Monday. His death happened and was announced on Wednesday.
Rachel Treisman (she/her) is a writer and editor for the Morning Edition live blog, which she helped launch in early 2021.