Encounters with Ady Barkan
Reflections on an activist who helped define America's health care battles
The first time I met Ady Barkan, in the middle of his big breakout political moment, he knew he’d probably lose. But he was fighting anyway.
It was December 2017. Republicans were speeding toward passage of a tax-cut bill with no Democratic support. Activists were warning that massive cuts to health programs would be required to pay for it.
And Ady was one week removed from haranguing Sen. Jeff Flake aboard an airplane, captured in a video destined to go viral: an ALS patient, pleading with a Republican senator to block the tax-cut bill and “save my life.”1
Now Ady was back in Washington, trying to coax his failing body through nonstop meetings, protests and media appearances. The GOP had control of both chambers of Congress and the White House; the only hope that Ady had to stop the tax-cut bill was to convince a few senators like Flake to vote no.
It was a slim hope. It would prove fruitless.2 But “slim hope” had come to define Ady’s life by the time we sat down.
He was 33 years old, a few days away from turning 34. He also knew he was months — maybe several years — away from his death.
And if I’m honest — his hotel room felt more than a bit like a hospital room. It had the smell of sickness. There were the tell-tale signs of a person with medical needs. You know it if you’ve lived it.
It would’ve been easy for him to despair. And there were a few tears during our conversation, much of which was quickly posted as a Politico podcast.
But mostly, Ady wanted to convey hope, he said. A little bit of hope … that the government can be made to be accountable, that democracy can work, he told me.
I had been among the early reporters to amplify his confrontation with Flake — tweeting about it at 1:45 a.m. — so maybe that’s why Ady took a few minutes to sit with me and podcast producer Bridget Mulcahy, on a day when every minute counted. Or maybe Ady figured that our Politico podcast would be yet another path to reach the lawmakers whose minds he desperately wanted to change.
Though he hardly needed another podcast. As we sat together, late on a Friday morning, clips of his appearances on CNN and MSNBC were racking up millions of views around the internet. Famous actors and athletes were following him on Twitter. Democratic senators were lining up to cut their own videos with him.
What is it like to be at the center of this moment, I asked him. Ady took a beat to answer.
It’s a surreal burden, in some ways, he said, before cracking a joke, but also natural because I've always been a very arrogant person.
Ady Barkan passed away on Wednesday, at 39. He leaves behind a wife and two young children, and a legacy of being a very, very vocal activist — no small feat for a man who ended up relying on a computer to speak for him.
I spoke to a few of his closest colleagues on Thursday, who conceded he was tough, demanding, in many ways a perfectionist. Maybe a little arrogant, too, at least intellectually. But they also shared stories of his humor and humanity, his piercing questions about their own lives and deep concern for others.
Ady was already succeeding as an activist before he got sick, a point I tried to convey in the Washington Post obituary that I wrote on Thursday. But his clash with Flake launched him onto the national stage — and his ALS helped keep him there.
Everyone expected him to die. It was a theme that shaped Ady’s media coverage, sometimes explicitly. “The Most Powerful Activist in America Is Dying,” Arthur Allen wrote in a terrific Politico Magazine profile — more than 4.5 years ago.
But then Ady … just didn’t die. He traveled the country trying to elect Democrats before the 2018 midterm elections, and then became a power broker in the 2020 Democratic campaign, as candidates trekked to California to try to win his endorsement.
Today, those interviews make for fascinating historical artifacts. He challenged Sen. Cory Booker about why he had taken drug companies’ money. He spent several minutes probing Sen. Kamala Harris about whether she truly believed in Medicare for All.
And after the election, he became a sometime-thorn in the side of the Biden administration, prodding the president to keep his commitments to progressives.
Some Biden officials were annoyed by Ady and his allies’ activism, particularly around a patent fight related to covid-19 vaccines that was seen by many in the administration as unproductive. But mostly they cheered and respected him, a sentiment conveyed by the condolences the president tweeted on Thursday.
We never talked about it, so I don’t know for sure how Ady felt about occasionally annoying the White House. But I think Ady would’ve liked that he did.
The second time I met Ady Barkan was in Vermont, as he appeared with Sen. Bernie Sanders to stump for Medicare for All.
It was August 2018, eight months since our sit down, and the changes were shocking and visible. The man who had gingerly walked, with support, in a hotel room was now relying on a motorized wheelchair. His speech was labored and often unintelligible.
Ady had come to Vermont on his Be a Hero tour, aiming to visit roughly 20 states in 40 days — in an RV — while challenging Republicans and supporting Democrats ahead of the midterm elections. In many ways, it was the real-life affirmation of the virtual victory lap he’d enjoyed after confronting Flake. Actual people were coming to see Ady, to cheer him, and to join his cause.
But the toll of travel and speaking engagements quickly mounted, and Ady had grown much weaker by the time he arrived in Vermont. Liz Jaff, his close friend and cofounder of Be a Hero, told me it was devastating to watch Ady’s words slip away from him, as his mouth simply wouldn’t do what he willed it to do.
I caught up with Ady in the parking lot after his appearance with Sanders, and he was clearly exhausted, barely able to mutter a few words. But it was the last moment I would hear his actual voice; every time we corresponded after that was through email, Twitter message or texts conveyed by his collaborators.
Being a beat reporter means being in lots of running conversations, sometimes juggling hundreds of texts, dozens of calls and emails and even a few coffee meetings across a particularly busy day. It can be a transactional existence — one that doesn’t always allow for closeness or reflection, amid the rush to break news and hit deadlines.
And often, those conversations are with people who are complete opposites. To put it another way: if I’m doing my job, I’m talking to Ady Barkan — but I’m also talking to the person who opposes Ady Barkan. And it grew harder to talk to Ady Barkan as he relied on machines and surrogates to speak for him.
So I don’t want to exaggerate our relationship. We never had the long, expansive conversations that I’ve had with other activists and officials, some of whom have spent hours on the phone with me, breathlessly making a case for their priorities. We never met up in secret so he could help me break a big scoop. We never even discussed this tantalizing tweet about one of the NBA’s most memorable games, a clear missed opportunity by your hoops-crazed author.
But it was also clear that Ady Barkan was someone who mattered — I cared about what he thought and did. At Politico, I shared news of his campaigns in my daily newsletter. At the Washington Post, I chose his words to lead a story about a fight for home-health funding and other progressive priorities.
So as I wrote Ady’s obituary on Thursday, I tried to reflect on the broader arc of his life. Ady’s ascent to national fame six years ago was helped by his ALS, but also fueled by a convenient foil — Jeff Flake — whose responses about the tax-cut bill were mostly forgotten, even as Ady’s words became a rallying cry.
One of Ady’s close friends told me that the Republican senator was understandably annoyed by how Ady’s viral moment had come at his expense. The two men never met again, the friend claimed.
But Flake, now the U.S. ambassador to Turkey, emailed me on Thursday afternoon with a different story: he and Ady continued to intermittently meet on Capitol Hill, visits that Flake claimed he came to enjoy. Even when the two didn’t agree, Ady “always treated me with respect and kindness,” the former senator told me.
“I was glad that he apparently never considered me a lost cause,” Flake added.
Of course, when thinking about their confrontation over the tax-cut bill, it was Ady who actually lost; Flake voted for the tax cuts less than two weeks after Ady’s personal pleas went viral. Other defeats for Ady would follow, too. He lost on home-health funding. He lost on efforts to unseat Republicans like Sen. Susan Collins. He even lost in the 2020 presidential campaign; Biden was his third choice, after Elizabeth Warren and Sanders, and refused to support Ady’s signature issue of Medicare for All.3
But Ady believed he could change minds, change the system, change Americans’ health care for the better. Faced with a death sentence at a young age, he used his condition to help shift the national political conversation; he rededicated himself to fighting for a stronger safety net. Say what you will about Ady Barkan — but he died trying.
The viral video stemmed from a series of chance encounters and culminated in a memorable moment at 30,000 feet in the air. As Ady prepared to board a plane to Arizona, he overheard a fellow activist named Liz Jaff making a phone call — venting about the challenge of making viral political videos — and struck up a conversation with her about their shared interests.
Liz told Ady that Jeff Flake — one of the key Republican senators in the tax-cut battle — was aboard their flight, and the two activists quickly agreed that they would try to engage him. When Ady walked past the senator, he secured a promise that the two men would talk about the tax-cut bill once the plane was in the air. Liz and Ady then came up with a plan to sit next to each other and record that conversation — even doing a test to ensure that the plane’s background noise wouldn’t drown out the recording, Liz told me. The rest is viral political video history.
Republicans indeed passed their bill with no Democratic support, but Congress took action to avert the health care cuts that Ady and others feared.
“Even though he wasn’t our first choice, I don’t think that progressives and Democratic Socialists should sit out the election, or vote third party, and I wanted to make that clear,” Ady said in July 2020, as he acknowledged activists’ disappointment that Biden was the Democrats’ nominee but tried to rally the party behind him.
Absolutely love this! Thank you for such a beautiful piece, Dan.