Ady Barkan, ALS advocate and subject of documentary ‘Not Going Quietly,’ dies at 39

Ady Barkan, an attorney and liberal activist whose story was featured in the 2021 documentary “Not Going Quietly,” has died. He was 39.

His wife, Rachael Scarborough King, shared the news on X/Twitter Wednesday, noting 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. “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.”

King 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 battle for health care rights to become a leader in the effort to save the Affordable Care Act. He was the subject of the 2021 documentary “Not Going Quietly,” directed by Nicholas Bruckman, which follows Barkan on a national campaign for health care reform.

In 2018, he co-founded Be A Hero, a nonprofit organization that aims to expand access to health care.

The organization’s co-executive director Jamila Headley shared in a statement, “After his diagnosis, Ady chose to use the time he had left fighting to create a country where health care is treated as a human right. He knew he was building something that would outlast him, and his relentless campaigning made him one of the most prominent health care advocates in the nation.”

The statement continued, “Ady testified before Congress at the first-ever Medicare for All hearing in 2019, interviewed the Democratic presidential candidates in 2020 to discuss health care in America, and spoke in prime-time at the Democratic National Convention. Up until his death, Ady spent his days working with the Be A Hero team of staff and volunteers to stop health insurance corporations from gouging Medicare and denying patients care, and fighting to make it possible for people with disabilities and older adults who need home and community-based services to get the care they need surrounded by the people they love.”

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

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