Ady Barkan, a progressive activist who spearheaded the struggle for healthcare reform despite having amyotrophic lateral sclerosis (ALS), passed away at the age of 39.
Rachael Scarborough King, Barkan’s wife, announced the news on social media on 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.”
In 2016, Barkan received an ALS diagnosis. A illness of the neurological system that is incurable and weakens brain and spinal cord nerve cells is called ALS. Three years is the usual survival period following diagnosis; however, 20% of individuals survive longer than five years, and some patients have survived up to 20 years.
“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.”
Barkan previously talked to PEOPLE about the moment he was diagnosed with ALS. Barkan was unable to speak and could only communicate by staring at a robotic keyboard that translated his eye motions into words.
“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.”
After learning of his diagnosis, the father of two declared he would not let the terminal illness to limit him.
Barkan, who was dependent on a ventilator for breathing and needed round-the-clock nursing care at his Santa Barbara home, started a campaign to get about $400 billion added to President Joe Biden’s proposed infrastructure bill for home health care for the elderly and disabled.
After a video of a fortuitous encounter on an airline was released in 2017, Barkan went viral. He pleaded with former Arizona senator Jeff Flake to “be an American hero” and reject a tax measure because he believed it would deny individuals like him access to health care.
The Yale Law School graduate created his “Be A Hero” campaign shortly after, thanking home care for enabling him to live “a beautiful, full life” with his family rather than being alone in a nursing home.
The documentary Not Going Quietly centers on Barkan’s lobbying work for healthcare reform, which has resulted in multiple arrests at the U.S. Capitol and a six-week, 22-state wheelchair road tour before to the 2018 midterm elections.