An activist dying from ALS told Congress that 'GoFundMe is a terrible substitute' for healthcare

  • On Tuesday, activist and lawyer Ady Barkan testified in front of Congress in favour of Medicare for All.
  • Barkan, 35, lives with amyotrophic lateral sclerosis (ALS).
  • Barkan used his own experience to explain why there should be universal healthcare and why “GoFundMe is a terrible substitute congressional action.”
  • The activist called the Medicare For All Bill “the only solution to what ails the American health-care system.”
  • Visit INSIDER’s homepage for more stories.

On Tuesday, activist and lawyer Ady Barkan testified in front of Congress in favour of the Democrats’ Medicare For All bill. Barkan lives with amyotrophic lateral sclerosis (ALS) and used his personal experience to advocate in favour of the bill, which supports a single-payer healthcare system in the US, GQ reported.

In 2016, Barkan was diagnosed with the degenerative disease, which impacts nerves and muscle control. According to the Washington Post, the disease has affected Barkan’s ability to speak. So on Tuesday, the activist addressed Congress using a computer system.

“Never before have I given a speech without my natural voice,” Barkan said. “Never before have I had to rely on a synthetic voice to lay out my arguments, convey my most passionately held beliefs, tell the details of my personal story.”

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Barkan, who lives in California with his wife, Rachael, and son, said he has “comparatively good private health insurance.” Still, his family pays about $US9,000 out of pocket for at-home medical care, according to The Guardian.

“We are cobbling together the money, from friends and family and supporters all over the country. But this is an absurd way to run a healthcare system,” he said. “GoFundMe is a terrible substitute for smart congressional action.”

If not for his private insurance, according to The Guardian, Barkan said his other option would be to go on Medicare, which would place him in a nursing home away from his family, he said.

“Like so many others, Rachael and I have had to fight with our insurer, which has issued outrageous denials instead of covering the benefits we’ve paid for,” he said. “We have so little time left together, and yet our system forces us to waste it dealing with bills and bureaucracy.”

Barkan first became prominent in activist circles in 2017 when he confronted former Arizona Sen. Jeff Flake on a flight from Pheonix to Washington, asking him not to vote on the Republican tax plan. Barkan told Flake about how he lives with ALS and told him how his vote would lead to funding cuts to programs he depends on.

Ultimately, Flake voted in favour of the bill.

In the last two years, Barkan has continued to push the cause. He has attended a number of protests and was arrested at several recent demonstrations, including one about the appointment of Judge Brett Kavanaugh to the Supreme Court, The Guardian reported.

Before testifying on Tuesday, Barkan participated in a protest in support of Medicare for All, which he has called “the only solution to what ails the American health-care system,” according to the Washington Post.

“We have a once-in-a-generation opportunity to win what we really deserve,” Barkan said on Tuesday. “No more half measures. No more health care for some. We can win Medicare for all.”

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