Ady Barkan, a powerful moral force in the fight for a just healthcare system, died at the age of 39 on Wednesday from complications of amyotrophic lateral sclerosis, commonly known as ALS.
Following his terminal diagnosis in 2016 — just months after the birth of his son, Carl — Barkan campaigned tirelessly for Medicare for All and other progressive causes, frequently taking part in Capitol Hill protests, congressional hearings, and conversations with prominent political figures even as he lost the ability to stand, walk, and speak on his own.
In 2020, Barkan delivered an address to the Democratic National Convention using a voice-generating device attached to his wheelchair.
“Like so many of you, I have experienced the ways our healthcare system is fundamentally broken. Enormous costs, denied claims, dehumanizing treatment when we are most in need,” Barkan said. “Since my shocking diagnosis, I have traveled the country meeting countless patients like me, demanding more of our representatives and our democracy.”
Barkan’s death was announced Wednesday by his wife, Rachael.
“You probably knew Ady as a healthcare activist,” she wrote. “But more importantly he was a wonderful dad and my life partner for 18 years.”
Hi all, this is Ady’s wife, Rachael. I’m devastated to share the news that Ady has 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. [1/4] pic.twitter.com/KZ8k73Gujp
— Ady Barkan (@AdyBarkan) November 2, 2023
Be a Hero — an advocacy organization that Barkan co-founded in 2018, the year before the birth of his daughter, Willow — said in a statement that Ady “inspired many of us to join the fight for universal access to life-saving and life-giving healthcare.”
“Ady was a life-long activist and movement lawyer,” said Jamila Headley, the group’s co-executive director. “Before he co-founded Be a Hero in 2018, Ady spent years fighting to advance worker rights and economic justice at social justice organizations, including Make the Road New York and the Center for Popular Democracy, where he co-founded the Fed Up Campaign and Local Progress.”
“Up until his death,” Headley continued, “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.”
It’s with deep sadness that we announce the death of our co-founder and co-executive director, @AdyBarkan, at age 39 due to ALS-related complications.
— Be a Hero (@BeaHero) November 2, 2023
Ady will continue to be at the heart of Be A Hero and what we do here for years to come. pic.twitter.com/Cd6sfxVW5l
News of Barkan’s passing was met with an outpouring of tributes from those who worked alongside him for healthcare and economic justice.
“There are no words to capture Ady Barkan’s brilliance, moral clarity, and immense capacity to imagine and fight for a new world,” progressive activist Ana Maria Archila wrote on social media. “My dear friend, rest in power. Forever and always, your voice will guide us.”
Rep. Pramila Jayapal (D-Wash.), chair of the Congressional Progressive Caucus and one of the lead sponsors of Medicare for All legislation in the House, said in a statement late Wednesday that “the progressive movement has lost a hero tonight.”
“Ady Barkan accomplished more in his too-short time here than most do many lifetimes over. This country, and the lives of all of us who knew and loved him, are better for it,” said Jayapal, whose Medicare for All bill now has the support of more than half of the House Democratic caucus. “I am devastated to lose a champion, a partner, and a friend. My Progressive Caucus colleagues and I are with all those mourning Ady tonight, and we send our deepest condolences to Rachael, Carl, and Willow.”
Sen. Bernie Sanders (I-Vt.), the Senate’s top Medicare for All proponent, wrote on social media that “Ady Barkan was an inspiration to all of us.”
“There are very few people in this country who have done more to make healthcare a human right,” Sanders added. “To honor his life, let us dedicate ourselves to completing his work.”
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