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.”
Truthout Is Preparing to Meet Trump’s Agenda With Resistance at Every Turn
Dear Truthout Community,
If you feel rage, despondency, confusion and deep fear today, you are not alone. We’re feeling it too. We are heartsick. Facing down Trump’s fascist agenda, we are desperately worried about the most vulnerable people among us, including our loved ones and everyone in the Truthout community, and our minds are racing a million miles a minute to try to map out all that needs to be done.
We must give ourselves space to grieve and feel our fear, feel our rage, and keep in the forefront of our mind the stark truth that millions of real human lives are on the line. And simultaneously, we’ve got to get to work, take stock of our resources, and prepare to throw ourselves full force into the movement.
Journalism is a linchpin of that movement. Even as we are reeling, we’re summoning up all the energy we can to face down what’s coming, because we know that one of the sharpest weapons against fascism is publishing the truth.
There are many terrifying planks to the Trump agenda, and we plan to devote ourselves to reporting thoroughly on each one and, crucially, covering the movements resisting them. We also recognize that Trump is a dire threat to journalism itself, and that we must take this seriously from the outset.
Last week, the four of us sat down to have some hard but necessary conversations about Truthout under a Trump presidency. How would we defend our publication from an avalanche of far right lawsuits that seek to bankrupt us? How would we keep our reporters safe if they need to cover outbreaks of political violence, or if they are targeted by authorities? How will we urgently produce the practical analysis, tools and movement coverage that you need right now — breaking through our normal routines to meet a terrifying moment in ways that best serve you?
It will be a tough, scary four years to produce social justice-driven journalism. We need to deliver news, strategy, liberatory ideas, tools and movement-sparking solutions with a force that we never have had to before. And at the same time, we desperately need to protect our ability to do so.
We know this is such a painful moment and donations may understandably be the last thing on your mind. But we must ask for your support, which is needed in a new and urgent way.
We promise we will kick into an even higher gear to give you truthful news that cuts against the disinformation and vitriol and hate and violence. We promise to publish analyses that will serve the needs of the movements we all rely on to survive the next four years, and even build for the future. We promise to be responsive, to recognize you as members of our community with a vital stake and voice in this work.
Please dig deep if you can, but a donation of any amount will be a truly meaningful and tangible action in this cataclysmic historical moment. We are presently looking for 143 new monthly donors before midnight tonight.
We’re with you. Let’s do all we can to move forward together.
With love, rage, and solidarity,
Maya, Negin, Saima, and Ziggy