On Wednesday, health care activist Ady Barkan lost his battle with the neurodegenerative disease ALS.
He was 39 years old. He was diagnosed with the disease in 2016, just after the birth of his son. When he first got the news of the terminal illness, Barkan said his world fell apart.
As the large medical bills began pouring in, he was inspired to take action against what he said is a flawed health care system in the United States.
As his disease progressed, leaving him paralyzed and unable to speak, Barkan took action, using his ailing body as a weapon in the fight for healthcare rights.
“I learned we could transcend the darkness of this moment, of any moment,” he said. “By joining the struggles of past and future freedom fighters by coming together in pursuit of a better world.”
In honor of Barkan’s life and legacy, we look back on our episode with him in a special edition of LA Stories Revisited.
He talked to Fernandez using unique eye gaze technology, which allowed him to form words and answers using only a computer screen and his eyes.
He opened up about his journey with ALS, which is chronicled in the documentary "Not Going Quietly." Barkan first rose to fame after a chance encounter with then Senator Jeff Flake, where Barkan urged Flake to vote against tax cuts that would hurt his access to health care, along with millions of others.
Video of the encounter went viral, and while Flake ultimately voted for the tax cuts, Barkan seized the opportunity to use his newfound platform to grow his activism for health care rights.
He even helped create the “Be a Hero” fund, which uses fundraising to create change. “Hope is not a state of mind,” he said. “It’s a state of action.”
As a father of two, Barkan said his children provided motivation in his battle for patient rights. Though his body was ailing, he staged protests and sit-ins, and confronted lawmakers directly in an effort to make change.
Knowing that his time was limited, he wanted to do everything he could to leave the world in a better place for his kids. While the battle with ALS was hard, and the disease was devastating, Barkan held on to the hope that something good would come out of the diagnosis.
“I may not live to see us win every fight I’ve taken on,” he said. “But I know one day someone will. Perhaps that someone will be my children or yours. And that’s motivation enough for me.”
Watch “LA Stories with Giselle Fernandez” at 9 p.m. every Monday on Spectrum News 1.