[Mr. Barkan campaigned for Medicare for all while struggling with
A.L.S., the terminal neurodegenerative disease. ]
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ADY BARKAN, HEALTH CARE ACTIVIST SPURRED BY HIS ILLNESS, DIES AT 39
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Mike Ives
November 2, 2023
The New York Times
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_ Mr. Barkan campaigned for Medicare for all while struggling with
A.L.S., the terminal neurodegenerative disease. _
Ady Barkan in 2019. He had a knack for blending his personal story
with calls for action., Rozette Rago for The New York Times
Ady Barkan, a well-known activist who campaigned for Medicare for all
while struggling with the neurodegenerative disease A.L.S., died on
Wednesday in Santa Barbara, Calif. He was 39.
His death, at Santa Barbara Cottage Hospital, was announced by Be a
Hero [[link removed]], the
political organization he co-founded in 2018.
Mr. Barkan was diagnosed with A.L.S., or amyotrophic lateral
sclerosis, in 2016, four months after the birth of his son, Carl. The
disease, which causes paralysis, strikes many patients in the prime of
life and often leads to death within two to five years.
As Mr. Barkan confronted his mortality, he dedicated the rest of his
life to changing the American health care system.
His profile and influence grew even as his health deteriorated, in
part because he had a knack for blending his personal story with calls
to action
[[link removed]].
He testified before Congress, interviewed Democratic presidential
candidates and spoke at the Democratic National Convention.
“That’s the paradox of my situation,” he told The New York Times
[[link removed]]
in 2019. “As my voice has gotten weaker, more people have heard my
message. As I lost the ability to walk, more people have followed in
my footsteps.”
Ohad Barkan was born on Dec. 18, 1983, in Boston. His mother, Diana
Kormos Buchwald, is a professor of the history of science at the
California Institute of Technology in Pasadena. His father, Elazar
Barkan, is a professor of international and public affairs at Columbia
University. Both emigrated to the United States from Israel.
Mr. Barkan was raised in Cambridge, Mass., where his parents were
graduate students, and later in California, where he attended high
school in Claremont. One of his first forays into politics was
volunteering on an election campaign for Representative Adam Schiff,
Democrat of California.
He met his wife, Rachael King, who is now a professor of English
literature at the University of California, Santa Barbara, at Columbia
University’s student newspaper when they were undergraduates there.
Initially wanting to be a lawyer, Mr. Barkan was a clerk for a federal
judge in New York after law school. But he decided to become a
full-time activist after being drawn to the Occupy Wall Street
protests that began in Lower Manhattan in 2011.
Before his A.L.S. diagnosis, Mr. Barkan was an energetic but
relatively anonymous foot soldier for progressive causes, including
rights for immigrants and workers, ending mass incarceration and
reforming the Federal Reserve. After getting sick, he became a hero of
the left and a social media star. Politico called him
[[link removed]]
“the most powerful activist in America.”
He was adept at attracting public attention to his progressive causes.
On an airplane in 2017, he confronted Senator Jeff Flake
[[link removed]],
Republican of Arizona, over a Republican tax bill that he believed
could lead to steep cuts in social services, like health care.
“Think about the legacy that you will have for my son and your
grandchildren if you take your principles and turn them into votes,”
Mr. Barkan said. “You can save my life.”
In 2018, he was arrested in his wheelchair
[[link removed]]
in a Senate office building as he protested the Supreme Court
nomination of Brett M. Kavanaugh.
[Mr. Barkan, photographed from above, is smiling as he sits in a
wheelchair beside another protester in a wheelchair as police officers
surround them. ]
Mr. Barkan, center, as he was about to be arrested by Capitol Police
in 2018 during a protest in the Russell Senate Office Building in
Washington over the nomination of Brett M. Kavanaugh to the Supreme
Court. Credit...T.J. Kirkpatrick for The New York Times
Be a Hero, which was formally founded that year, eventually grew to
include two nonprofits and a political action committee. Among other
issues, the group campaigned to protect nurses during the pandemic,
and to replace Senate Republicans, who it said were the chamber's
“most dangerous voices” in the 2022 midterm elections.
Senator Elizabeth Warren, Democrat of Massachusetts, said in September
that she had watched Mr. Barkan “pick a lot of really good fights”
over the years, and that he had been instrumental in stopping
Republican efforts to repeal the Affordable Care Act, President Barack
Obama’s signature domestic achievement.
“Thanks to his persistence, he hasn’t just been in the fight,”
Ms. Warren said, speaking virtually to an audience at the Franklin D.
Roosevelt Presidential Library and Museum in Hyde Park, N.Y., where
Mr. Barkan was accepting an award from the Roosevelt Institute for his
activism. “He’s been leading these fights, and helping win
them.”
In the lead-up to the 2020 presidential election, Mr. Barkan made
clear that while he endorsed the Democratic nominee,
[[link removed]]
Joseph R. Biden Jr., he disagreed with the candidate on health care
policy. (President Biden opposes Medicare for all, and Mr. Barkan had
initially endorsed Ms. Warren and later Senator Bernie Sanders of
Vermont for the party’s nomination.)
In a 2020 discussion with Mr. Barkan over Zoom, Mr. Biden would not
commit to doubling the budget for the National Institutes of Health,
saying that he would “significantly increase the budget” and
ensure that “we spend another $50 billion on biomedical research”
over the next several years.
“I think that is not enough,” said Mr. Barkan, who by that point
could speak only through a computerized voice using eye gaze
technology.
“Well, maybe when I get elected, you can come and help me figure out
what’s enough,” Mr. Biden told him.
“Thank you, Mr. Vice President,” Mr. Barkan replied. “I’ll
take you up on that.”
Mr. Barkan is survived by his parents; his wife; their children, Carl,
7, and Willow, 3; a brother, Muki Barkan; and several aunts and
uncles.
In a video [[link removed]]
celebrating Mr. Barkan’s 39th birthday, Carl summarized his
father’s life’s work with remarkable economy: “He helps to make
sure it’s not too expensive for people to go to the doctor.”
Mr. Barkan remained relentlessly optimistic and energetic even as he
become paralyzed from the head down and lost control of his breathing.
In 2018, he traveled to 22 states
[[link removed]] in 40 days. Three years
later, he argued in an opinion article in The New York Times
[[link removed]]
that home- and community-based care deserved more federal funding.
“Although I’m not the father I had hoped to be, I’m grateful for
each moment with my children,” he wrote. “And it’s all possible
because I have 24-hour home care.”
In a speech
[[link removed]] at
the Roosevelt Library in September, his last in-person event, Mr.
Barkan opened by thanking his three caregivers and saying that he and
Ms. King would soon celebrate the 18th anniversary of their
relationship.
“Every year has been an adventure, and coming to New York this week,
especially with our two perfect angels, Carl and Willow, is wonderful
evidence that new adventures still await us,” he told the audience
from his wheelchair. “And that staying in the struggle can bring
beautiful rewards.”
Johnny Diaz contributed reporting.
Mike Ives [[link removed]] is a reporter for The
Times based in Seoul, covering breaking news around the world. More
about Mike Ives [[link removed]]
A version of this article appears in print on Nov. 3, 2023, Section B,
Page 11 of the National edition with the headline: Ady Barkan, 39,
Health Care Activist Spurred by Illness. Order Reprints
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* Ady Barkan; Be A Hero; Medicare for All;
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