Ady Barkan, Healthcare Activist and Subject of Documentary “Not Going Quietly”, Dies of ALS at 39

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Ady Barkan, who was diagnosed with ALS in 2016, died Wednesday due to complications of the neurodegenerative, incurable disease

<p>Vivien Killilea/Getty</p> Ady Barkan

Vivien Killilea/Getty

Ady Barkan

Ady Barkan, progressive activist who used his battle with amyotrophic lateral sclerosis (ALS) to lead the fight for healthcare reform, has died at the age of 39.

Barkan’s wife, Rachael Scarborough King, shared the news on social media Wednesday.

“I’m devastated to share the news that Ady has died from complications of ALS,” she wrote on X, formerly Twitter. “You probably knew Ady as a healthcare activist. But more importantly he was a wonderful dad and my life partner for 18 years.”

Barkan was diagnosed with ALS in 2016. ALS is an incurable nervous system disease that weakens nerve cells in the brain and spinal cord. The average survival time post-diagnosis is three years, though as many as 20% of patients live more than five years and some have lived as many as 20 years after their diagnosis.

“Ady fought for the 24/7 care he needed to be home with us until the end of his life,” King said of her husband, alongside a family photo. “It’s impossible to thank his incredible caregivers enough for their labor and care, which allowed us to live as a family through Ady’s health challenges. Everyone should have that chance.”

She continued, “Thank you to everyone who has supported Ady and our family over the years — from the amazing caregivers who became family to us to the activists facing their own health challenges who joined the movement he was building @BeAHero.”

Related: Dad Dying of ALS Devotes His Remaining Days to Fighting for Home Healthcare for Those in Need

Barkan — who could only speak by gazing at a computerized keyboard that transforms his eye movements into machine-generated words — previously spoke to PEOPLE about the moment he was diagnosed with ALS.

"Rachael and I were both stunned," he said in October 2021. "I never imagined it could be something as insidious as ALS. My life completely changed overnight."

Following his diagnosis, the father of two said he refused to be held back by the incurable disease.

Barkan — who depended on a ventilator to breathe and relied on 24-hour nursing care at his home in Santa Barbara — embarked on a crusade to get nearly $400 billion for home health care for the disabled and elderly added to President Joe Biden's proposed infrastructure bill.

Barkan became a viral sensation in 2017 after the release of a video showing a chance encounter on an airplane. He asked former Arizona Sen. Jeff Flake to "be an American hero" and vote against a tax bill that he was convinced would restrict health care to people like him.

Michael Nigro/Pacific Press via ZUMA Ady Barkan
Michael Nigro/Pacific Press via ZUMA Ady Barkan

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Shortly afterwards the Yale Law School grad — who credited home care with allowing him to live "a beautiful, full life" with his family instead of being alone in a nursing home — launched his "Be A Hero" campaign.

"Providing care for people we love isn't a Republican issue or a Democratic issue," he said at the time. "It's an American issue and a moral one to ensure that everyone gets to live safely, with dignity and respect."

Barkan's advocacy work for healthcare reform — which has involved several arrests at the U.S. Capitol, along with a six-week, 22-state road trip in his wheelchair before the 2018 midterms — is the subject the documentary Not Going Quietly.

"I want to leave behind a legacy that inspires at least a couple of new people to get involved and be part of our political process," Barkan told PEOPLE. "The cure for what ails American democracy is more American democracy."

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