Universal health care activist Ady Barkan dies at 39
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Universal health care activist Ady Barkan has died from ALS. He was 39 years old.
His wife Rachel King announced his death Wednesday on social media.
“I’m devastated to share the news that Ady has died from complications of ALS,” she wrote. “You probably knew Ady as a healthcare activist. But more importantly he was a wonderful dad and my life partner for 18 years.”
“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.”
A former progressive attorney, Barkan began campaigning for health care reform after his diagnosis in late 2016.
The following year, he confronted then-Sen. Jeff Flake over the GOP tax bill that would slash Medicare funding and used viral videos of their exchange to springboard into national progressive politics, focusing mostly on access to health care and ultimately becoming “the most powerful activist in America,” according to Politico.
He co-founded the political advocacy group Be a Hero in 2018.
His story was chronicled in the 2021 documentary “Not Going Quietly.”
“The paradox of my situation has been that as ALS has made my voice weaker, more people have heard my message,” Barkan told NPR in 2022. “As I’ve lost the ability to walk, more people have followed in my footsteps.”
ALS — or amyotrophic lateral sclerosis, sometimes referred to as Lou Gehrig’s disease — is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. While treatments are available, it is a degenerative and ultimately terminal condition.
