Ady Barkan, a lawyer and influential activist who used his years of battling amyotrophic lateral sclerosis to advance health care rights, has died. He was 39.
His wife, Rachael Scarborough King, shared the news on X (formerly Twitter) on Wednesday that Barkan “died from complications of ALS.”
“You probably knew Ady as a healthcare activist. But more importantly, he was a wonderful father and my life partner for 18 years,” she wrote in a statement. “Ady fought for the 24/7 care he needed to be at home with us until the end of his life. It is impossible to thank his incredible caregivers enough for their labor and care, which allowed us to live as a family despite Ady’s health problems. Everyone should get that chance.
Her statement continued: “Thank you to everyone who has supported Ady and our family over the years – from the amazing caregivers who have become family to us to the activists facing their own health challenges and who have joined the movement he was building (Be A Hero). ”
Barkan, who was diagnosed with ALS in 2016, used his own struggle for access to health care to become a leader in the effort to save the Affordable Care Act.
His story was also featured in the 2021 documentary Doesn’t go quietly, directed by Nicholas Bruckman. It followed him through his progressive advocacy as he began a national campaign for health care reform, including while testifying before Congress.
Barkan also made headlines when he confronted U.S. Senator Jeff Flake on a plane in 2017 and asked 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 is committed to expanding access to healthcare.
The organization’s co-executive director, Jamila Headley shared in a statement on social media: “The Be A Hero team shared the deep sorrow of everyone who knew and loved Andy. We always knew we wouldn’t have enough time with him. While we can’t imagine a world without him learning, strategizing, fighting and laughing along with us, we do know that Andy’s work will live on through Be A Hero and the patient movement we are building.
Barkan is survived by his wife Rachael and their two children, Carl and Willow.