Activist With ALS Tells Congress: ‘GoFundMe Is A Terrible Substitute’ For Gov’t Action

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Ady Barkan, an activist with advanced amyotrophic lateral sclerosis — known as ALS, or Lou Gherig’s disease — urged members of a congressional committee on Tuesday to support Medicare for All.

“Some people argue that although Medicare for All is a great idea, we need to move slowly to get there,” Barkan, who works with the progressive Center for Popular Democracy, said in his opening statement to members of the House Rules Committee on Tuesday. A computerized voice read his words.

“But I needed Medicare for All yesterday. Millions of people need it today. The time to pass this law is now.”

Explaining that even with “comparatively good private health insurance,” his family had relied on family, friends and supporters to pay $9,000 monthly for home care, Barkan said: “GoFundMe is a terrible substitute for smart congressional action.”

“The fundamental truth,” he added later, “is that too many corporations make too much money off of our illnesses, and they are spending gazillions of dollars lobbying and campaigning and fighting to stop us from building something better.”

Barkan has been a national force in American politics during the Trump administration, from his encounter on a plane with then-Sen. Jeff Flake (R-AZ) to testifying before Congress to starring in campaign ads and fundraising for congressional Democrats to getting arrested multiple times in the U.S. Capitol (handcuffs were unnecessary for his otherwise nearly immobile wrists).

Thursday’s hearing was on Rep. Pramila Jayapal’s (D-WA) Medicare for All legislation; Committee Chairman Jim McGovern (D-MA) said it was the first hearing Congress had ever held on Medicare for All.

Watch Barkan’s full opening statement below, or read it here.

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