Ady Barkan Obituary – Death: Activist who Championed Health Care Reform, Ady Barkan Dies of ALS At 39

Ady Barkan Obituary – Death: Activist who Championed Health Care Reform, Ady Barkan Dies of ALS At 39

Ady Barkan Obituary: Ady Barkan, the progressive attorney and activist who grew to prominence campaigning for health care reform after being diagnosed with ALS, has died of complications of the disease. He was 39.

His death was announced on Monday by Rachael King, his partner of 18 years, as well as Be a Hero, the political organisation he co-founded in 2018.

Barkan was a lifelong social justice advocate who championed a variety of causes, from expanding worker rights to reforming the Federal Reserve. After he was diagnosed with the terminal neurological disease ALS (amyotrophic lateral sclerosis) in 2016—just months after the birth of his first child—he turned his focus towards improving Americans’ access to health care.

“The knowledge that I was dying was terrible, but dealing with my insurance company was even worse,” Barkan said in the trailer for Not Going Quietly, a 2021 documentary about his life and activism. “I wanted to spend every moment I had left with Rachael and Carl, but then Congress came after our health care. I couldn’t stay quiet any longer.”

Barkan went viral in 2017 after he confronted then-Sen. Jeff Flake, R-Ariz., about the GOP tax bill while on an airplane—on his way home from protesting that very legislation in D.C. Videos of the 11-minute exchange show Barkan urging Flake to “be an American hero” by voting no on legislation that would slash billions in Medicare funding and limit access to health care.

That conversation didn’t change Flake’s vote. But it did launch Barkan into the spotlight, and he amplified his advocacy for health care as a human right and other progressive causes in the years that followed.

Barkan spearheaded the Be a Hero campaign, travelling across the country to encourage voters to back progressive candidates in the 2018 midterm elections. He also co-founded the organisation by the same name, which has campaigned for a variety of causes and now spans nonprofits and a political action committee. That same year, he was also arrested in the U.S. Capitol for protesting the nomination of now-Supreme Court Justice Brett Kavanaugh.

Even after losing the ability to speak, Barkan testified (through a computer system that tracked his eye movements) at Congress’ first-ever hearing on Medicare for All in 2019. He interviewed Democratic presidential candidates in 2020—including President Biden, whom he ultimately endorsed—and spoke at the 2020 Democratic National Convention.