Ady Barkan, Influential ALS Advocate and Subject in ‘Not Going Quietly,’ Dies at 39

Ady Barkan, Influential ALS Advocate and Subject in ‘Not Going Quietly,’ Dies at 39

Ady Barkan, an attorney and influential activist who used his years-long battle with amyotrophic lateral sclerosis to advance healthcare rights, has died. He was 39.

His wife, Rachael Scarborough King, shared the news on X (formerly Twitter) Wednesday that Barkan “died from complications of ALS.”

“You probably knew Ady as a healthcare activist. But more importantly he was a wonderful dad and my life partner for 18 years,” she wrote in a statement. “Ady fought for the 24/7 care he needed to be home with us until the end of his life. 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.

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Her statement 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 (Be A Hero).”

Barkan, who was diagnosed with ALS in 2016, used his own fight for access to healthcare to become a leader in the effort to save the Affordable Care Act.

His story was also featured in the 2021 documentary Not Going Quietly, directed by Nicholas Bruckman. It followed him through his progressive advocacy work as he embarked on a national campaign for healthcare reform, including when he testified before Congress.

Barkan also made headlines when he confronted U.S. Sen. Jeff Flake on a plane in 2017, asking him to vote no on a tax bill that would hurt programs that help people like Barkan who have ALS.

In 2018, he co-founded the nonprofit Be A Hero, which works to expand access to healthcare.

The organization’s co-executive director Jamila Headley shared in a statement on social media, “The Be A Hero team shared in the profound grief of all who knew and loved Andy. We’ve always known we wouldn’t have enough time with him. 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, Andy’s work will live on.”

Barkan is survived by his wife Rachael, and their two children, Carl and Willow.