On November 1, 2023, the world lost a remarkable advocate for healthcare reform and social justice. Ady Barkan, a Yale-trained lawyer, passionate activist, and ALS (amyotrophic lateral sclerosis) survivor, passed away at the age of 39 in Santa Barbara, California.
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His life was a testament to the power of resilience, determination, and a relentless commitment to improving the lives of others.
Early Activism and Recognition
Ady Barkan’s journey as an activist began long before he was diagnosed with ALS. He initially dedicated his efforts to causes such as improving housing for low-income Americans, strengthening protections for immigrants, and fighting for progressive values. In 2016, at the age of 32, Politico recognized Barkan as one of the most influential figures in American politics. His advocacy work focused on reforming the country’s banking system, arguing that the Federal Reserve did not adequately address the needs of working people.
Diagnosis and a New Purpose
However, in the same year, Ady Barkan received a devastating diagnosis: ALS. This terminal illness led him to a personal reckoning, and he quickly realized that he could use his condition as a platform to engage policymakers in discussions about healthcare reform. Despite the physical toll ALS took on his body, he never wavered in his commitment to making a difference.
A Hero’s Plea
One of the most poignant moments in Ady Barkan’s journey came in December 2017 when he confronted then-Senator Jeff Flake (R-Ariz.). Barkan warned Flake that proposed legislation would lead to unsustainable medical bills for ALS patients and others with serious health conditions. He implored Flake, “You can be an American hero. You can save my life.” Despite skepticism from some politicians, Barkan’s passionate plea captured the nation’s attention and marked the birth of the “Be a Hero” organization.
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Be a Hero: Advocacy and Activism
Be a Hero, founded by Ady Barkan and Liz Jaff in 2018, focused on staging protests against Republican policies and advocating for healthcare priorities, including Medicare-for-all, a single-payer healthcare system championed by some Democrats. Barkan testified before Congress in April 2018, passionately proclaiming, “Health care is not treated as a human right in the United States of America.”
A Cross-Country Journey
In the summer of 2018, Ady Barkan and Liz Jaff embarked on a cross-country RV tour to confront Republicans about their votes and support Democratic candidates in the midterm elections. The physical toll of travel and speaking engagements was evident as Barkan gradually lost his ability to speak. However, his determination remained unwavering, and he began using a computer-generated voice to communicate.
A Powerful Voice
Ady Barkan’s impact continued to grow. In April 2019, he testified at Congress’s first-ever hearing devoted to Medicare-for-all, using his computer-generated voice to convey his message. He also engaged with candidates seeking the Democratic nomination for the 2020 presidential campaign, initiating one-on-one conversations to address healthcare and social justice.
A Life of Passion and Purpose
Ady Barkan’s life and activism were marked by a relentless pursuit of justice and his unwavering commitment to creating a more equitable society. Despite the limitations imposed by ALS, he continued to inspire countless individuals with his resilience and dedication to the causes he held dear.
A Lasting Legacy
Ady Barkan’s legacy lives on through his memoir, “Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance,” and the 2021 documentary “Not Going Quietly.” His impact on healthcare reform and social justice will continue to inspire future generations to advocate for change, making the world a better place in his memory.
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