Ady Barkan, health care activist with ALS who confronted Sen. Jeff Flake, has died

A California health care activist, who went viral for a 2017 plane conversation with then-Sen. Jeff Flake, has died of complications of the terminal neurodegenerative disease ALS.

Ady Barkan's death at age 39 was announced Wednesday by Be a Hero, a political organization he co-founded in 2018.

Barkan was diagnosed with ALS, also known as Lou Gehrig's disease, in 2016, just four months before the birth of his son. The disease affects the nervous system, weakens muscles and impacts physical function.

He became a leader in the effort to save the Affordable Care Act, former President Barack Obama's signature health care reform law. That activism led to his conversation with Flake aboard an American Airlines flight from Washington, D.C., to Phoenix almost six years ago. Flake was a one-term Republican senator from Arizona who now serves as the U.S. ambassador to Turkey.

"If there were more people like him, we'd certainly be better off as a country," Flake said of Barkan, who he described as "bright" and "extremely committed to his cause."

On the flight, Barkan spoke with Flake, begging him to vote against a GOP tax-cut bill that included a provision to erase the mandate for people to buy health insurance coverage in the Affordable Care Act. Barkan told Flake that it could have a negative effect on his disability payments and rising medical costs, as he urged him to not vote for the tax cut. After speaking for hours on the flight, Flake did vote in favor of the tax-cut bill despite the conversation.

"We didn't agree on everything but he was kind and knowledgeable and he was a very effective lobbyist for his cause," Flake told The Arizona Republic in a phone interview. "I respected him a lot."

Barkan and Flake ended up on the same flight after Barkan had spent the week in Washington, D.C., speaking on the bill and trying to get the attention of lawmakers around the legislation.

"He is the single most important swing vote in this tax bill, and I need to tell him my story to vote against it," he recalled in a December 2017 interview with The Arizona Republic.

Moment with Flake: On flight to Phoenix, man with ALS pleads with Sen. Jeff Flake to vote no on tax bill

While the GOP tax-cut bill did eventually pass along partisan lines in Congress, Barkan's involvement in Arizona politics did not stop.

In April 2018, Barkan's political organization, Be a Hero, spent six figures toward the campaign of Democrat Hiral Tipirneni, who was running for the House from Arizona's 8th Congressional District. The seat was left open after former Rep. Trent Franks, R-Ariz., resigned from his position in Congress ahead of a pending ethics investigation related to sexual misconduct allegations.

Barkan backed Tipirneni, a doctor and Democrat in the West Valley, because of her support of the Affordable Care Act and accessible health care at large and was even featured in a commercial supporting her. Tipirneni was running against Rep. Debbie Lesko, R-Ariz., to replace Franks in Congress. Lesko eventually won.

"I think this race epitomizes the big questions about health care in America," Barkan said in a 2018 interview with The Republic.

Barkan and Flake also kept in touch after their initial conversation on the American Airlines flight and when Barkan would come to Washington, he would visit Flake in his office, Flake said.

"I always enjoyed that," Flake said. "I respected him greatly as a man and as a father and as a citizen. He was a good man."

Barkan was survived by his wife of 18 years, Rachael King, a professor of English literature at the University of California, and his two children, Willow and Carl.

King turned to X, formally known Twitter, to speak on her husband's passing.

"You probably knew Ady as a health care activist. But more importantly he was a wonderful dad and my life partner for 18 years," King wrote. "Words cannot express the pain of losing Ady. We thought we had many more together."

Reach reporter Morgan Fischer at morgan.fischer@gannett.com or on X, formally known as Twitter, @morgfisch.

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This article originally appeared on Arizona Republic: Ady Barkan, activist who had viral encounter with Jeff Flake, dies