Ady Barkan in Santa Barbara, Calif., in May 2022. Barkan, an activist who fought for access to universal health care, improved home health support, and other reforms to America’s health care system, died Wednesday. He was 39.  Jonas Jungblut for The Washington Post

Ady Barkan, an activist who fought for access to universal health care, improved home health support, and other reforms to America’s health care system as he suffered from the degenerative disease ALS, died Wednesday at a hospital in Santa Barbara, California. He was 39.

The cause was complications from the medical condition, sometimes known as Lou Gehrig’s disease, that had steadily robbed him of his ability to move and speak, said Liz Jaff, who co-founded the political advocacy group Be a Hero with Barkan.

A Yale-trained lawyer, Barkan initially worked as an activist to improve housing for low-income Americans, strengthen protections for immigrants, and other progressive causes.

The publication Politico in 2016 named Barkan, then 32, among the most influential people in American politics for his efforts to reform the country’s banking system, with Barkan arguing that the Federal Reserve did not appropriately reflect the needs of working people.

That same year, he was diagnosed with the terminal disease ALS, or amyotrophic lateral sclerosis, forcing Barkan into what he described as a personal reckoning. But he quickly realized that he could utilize his illness to force policymakers, who often shrugged off activists’ pleas, to engage with him in discussions about healthcare reforms.

As Republicans in December 2017 debated whether to pass a bill to cut taxes, Barkan confronted then-Sen. Jaff Flake, R-Ariz., and warned him that the party’s legislation would trigger automatic cuts to federal health programs that Barkan said would lead to unsustainable medical bills for ALS patients and Americans with other serious health conditions.

“You can be an American hero,” Barkan beseeched Flake, as fellow activist Jaff held the camera to capture the conversation. “You can save my life.”

Flake and other Republicans said Barkan’s claims about the bill’s impact were unfounded because Congress would take action to avert the health care cuts, and the party passed the legislation with no Democratic votes.

But Barkan’s video received national attention, transforming him overnight into a prominent commentator on healthcare causes, and the rallying cry he uttered – be a hero – became the name of the new organization that he and Jaff co-founded in 2018.

The group worked to stage protests of Republican policies and raise awareness for priorities such as “Medicare for All,” a proposed single-payer health system favored by some Democrats.

“The ugly truth is this: Health care is not treated as a human right in the United States of America. This fact is outrageous,” Barkan testified in a congressional hearing in April 2018, adding that he and his wife had been locked in fights with his health insurer over his medical bills.

“We have so little time left together, and yet our system forces us to waste it dealing with bills and bureaucracy,” he added.

Barkan and Jaff also embarked on a cross-country speaking tour in an RV in the summer of 2018, aiming to confront Republicans about their votes and help elect Democrats in that year’s midterm elections. But the travel and frequent speaking engagements had a visible toll: Barkan would lose his voice – frequently becoming unintelligible – even as he spoke to crowds of hundreds of supporters drawn to hear his message.

Barkan turned to a computer-generated voice that allowed him to hold conversations and make remarks, including when he testified at Congress’s first hearing devoted to Medicare for All in April 2019.

Days after that hearing, Barkan, Jaff, and their allies began strategizing around how he could play a role in the 2020 presidential campaign, eventually settling on a strategy of holding one-on-one conversations with candidates seeking the Democratic nomination.

Democratic Sens. Kamala Harris of California, Cory Booker of New Jersey, Elizabeth Warren of Massachusetts, and others agreed to sit down with Barkan in California, where they were confronted on taking donations from the pharmaceutical industry, whether they were misleading voters on their support for health reforms, and other discomfiting questions.

“He made himself a force,” said Mike Casca, who worked with Barkan to shape the policy priorities discussed during the 2020 campaign and is now a spokesperson for Sen. Bernie Sanders, I-Vt., a frequent ally of Barkan.

Barkan had initially endorsed Warren and, after she dropped out, backed Sanders in that year’s presidential race. But once Biden – who refused to support Medicare for All – secured the nomination, Barkan endorsed him too, saying the party needed to align to defeat the incumbent president, Donald Trump.

Barkan addressed the Democratic National Convention, saying that Trump had mismanaged the national response to the coronavirus pandemic and that only Biden could be trusted to pursue necessary healthcare reforms.

After Biden was elected, Barkan urged the administration to follow through on commitments that he had worked to secure from the new president. One was a pledge to suspend patents on coronavirus vaccines developed by the United States to share them more quickly with the world.

The most persistent clash was around home health support, with Barkan insisting that the Biden administration and congressional Democrats needed to pass $400 billion in additional funding to pay for more aides and expand access to the services.

“Home care is keeping me alive. I don’t think I could tolerate my paralysis if I were isolated in a nursing home instead of surrounded by the love of my children and wife every day,” Barkan told a reporter in September 2021, typing out the message with eye movements. “But millions of disabled people and their families aren’t as lucky as me.”

Democrats’ spending bill stripped out the added funding sought by Barkan – a gutting blow for the home health support movement. But Barkan hailed Biden the following summer for provisions contained in the Inflation Reduction Act that were intended to lower drug costs, including forcing companies to negotiate with the federal government on the prices of some high-cost medications.

“For decades, the pharmaceutical industry has had Congress and the American people in a death grip. This law will begin to free us from their clutches,” Barkan said in a statement at the time. But the activist’s praise was qualified. “This bill is a tenth of a loaf. But if you’re starving, a tenth of a loaf is a good start,” he said.

Ohad Barkan was born in Boston on Dec. 18, 1983, and grew up in Cambridge, Massachusetts, before completing high school in Claremont, California. His parents, who had immigrated from Israel, were university professors.

He became involved in politics as a teenager by campaigning for Rep Adam Schiff, D-Calif., in 2000. He said he initially identified as a centrist Democrat, but he grew disenchanted with America’s political system after the 2003 U.S.-led invasion of Iraq, saying the bipartisan support for the war effort revealed the need for more progressive reforms.

He received a bachelor’s degree in economics from Columbia University in 2006 and graduated from Yale Law School in 2010. He worked for the Center for Popular Democracy, a progressive advocacy organization, before launching Be a Hero.

Survivors include his wife of 18 years, Rachael King, an associate professor of English literature at the University of California at Santa Barbara, and their two children, Carl and Willow; his mother, Diana Kormos Buchwald, and his stepfather, Jed Buchwald, both professors of the history of science at the California Institute of Technology; his father, Elazar Barkan, a professor of international and public affairs at Columbia, and his stepmother, Pamela Smith, a history professor at Columbia; and a brother.

Barkan was the author of a 2019 memoir, “Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance,” and the focus of the 2021 documentary “Not Going Quietly.”

He often reflected on the irony that his messages resonated louder in Washington even as his body increasingly failed him.

“What I’ve trained myself to do is to influence government decision-makers,” Barkan said in a December 2017 interview, before he had completely lost his voice. “I don’t want everybody to be a professional activist. But I do want everybody to have a little bit of hope … that the government can be made to be accountable, that democracy can work.”