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Ady Barkan, activist dying of ALS, gives impassioned testimony at 'historic' Medicare for All hearin
Source: The Guardian
Ady Barkan, activist dying of ALS, gives impassioned testimony at 'historic' Medicare for All hearing
Lawyer speaks to House committee through computer that tracks eye movements: ‘My story is tragic but not unique’
Lauren Gambino in Washington
Wed 1 May 2019 06.00 BST Last modified on Wed 1 May 2019 13.38 BST
Ady Barkan has lost his ability to speak, but he has not lost his voice.
On Tuesday, the 35-year-old lawyer and activist, who is dying of amyotrophic lateral sclerosis, or ALS, testified at a “historic” Capitol Hill hearing on Medicare for All.
-snip-
Barkan told lawmakers that his family had “comparatively good private health insurance” but still pays about $9,000 a month for around-the-clock home care. The alternative, he said, would be to go on Medicare and move into a nursing home, which would take him away from his wife and son.
“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.”
He continued: “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. We have so little time left together, and yet our system forces us to waste it dealing with bills and bureaucracy.”
-snip-
Lawyer speaks to House committee through computer that tracks eye movements: ‘My story is tragic but not unique’
Lauren Gambino in Washington
Wed 1 May 2019 06.00 BST Last modified on Wed 1 May 2019 13.38 BST
Ady Barkan has lost his ability to speak, but he has not lost his voice.
On Tuesday, the 35-year-old lawyer and activist, who is dying of amyotrophic lateral sclerosis, or ALS, testified at a “historic” Capitol Hill hearing on Medicare for All.
-snip-
Barkan told lawmakers that his family had “comparatively good private health insurance” but still pays about $9,000 a month for around-the-clock home care. The alternative, he said, would be to go on Medicare and move into a nursing home, which would take him away from his wife and son.
“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.”
He continued: “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. We have so little time left together, and yet our system forces us to waste it dealing with bills and bureaucracy.”
-snip-
Read more: https://www.theguardian.com/us-news/2019/apr/30/medicare-for-all-hearing-ady-barkan-als
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