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.”
We’re not backing down in the face of Trump’s threats.
As Donald Trump is inaugurated a second time, independent media organizations are faced with urgent mandates: Tell the truth more loudly than ever before. Do that work even as our standard modes of distribution (such as social media platforms) are being manipulated and curtailed by forces of fascist repression and ruthless capitalism. Do that work even as journalism and journalists face targeted attacks, including from the government itself. And do that work in community, never forgetting that we’re not shouting into a faceless void – we’re reaching out to real people amid a life-threatening political climate.
Our task is formidable, and it requires us to ground ourselves in our principles, remind ourselves of our utility, dig in and commit.
As a dizzying number of corporate news organizations – either through need or greed – rush to implement new ways to further monetize their content, and others acquiesce to Trump’s wishes, now is a time for movement media-makers to double down on community-first models.
At Truthout, we are reaffirming our commitments on this front: We won’t run ads or have a paywall because we believe that everyone should have access to information, and that access should exist without barriers and free of distractions from craven corporate interests. We recognize the implications for democracy when information-seekers click a link only to find the article trapped behind a paywall or buried on a page with dozens of invasive ads. The laws of capitalism dictate an unending increase in monetization, and much of the media simply follows those laws. Truthout and many of our peers are dedicating ourselves to following other paths – a commitment which feels vital in a moment when corporations are evermore overtly embedded in government.
Over 80 percent of Truthout‘s funding comes from small individual donations from our community of readers, and the remaining 20 percent comes from a handful of social justice-oriented foundations. Over a third of our total budget is supported by recurring monthly donors, many of whom give because they want to help us keep Truthout barrier-free for everyone.
You can help by giving today during our fundraiser. We have 8 days to add 460 new monthly donors. Whether you can make a small monthly donation or a larger gift, Truthout only works with your support.