Dying Activist Tells Congress GoFundMe Isn’t a “Substitute” for Health Care

On Tuesday, Democrats on the House Rules Committee held the first hearings on Medicare for All, the proposed overhaul of the American for-profit health-care system. The first person to give testimony was Ady Barkan, an advocate for single-payer health care who was diagnosed with amyotrophic lateral sclerosis, or ALS, three years ago.

Barkan—whose voice had so degenerated that he had to rely on the same speech-generating device that the late Stephen Hawking used—testified about how private insurance has affected his life:

"For my family, although we have comparatively good private health insurance, ALS now means paying out of pocket for almost 24-hour home care. This costs us $9,000 every month. The alternative is for me to go on Medicare and move into a nursing home, away from my wife and my son. So 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 health-care system. GoFundMe is a terrible substitute for smart Congressional action." 

More and more Americans like Barkan are turning to crowd-funding platforms like GoFundMe to cover medical expenses. According to the company CEO Rob Solomon, one out of every three GoFundMe donations goes toward medical costs. "When we started in 2010, it wasn't purposefully set up and built to be a substitute for medical insurance," he told CBS. Barkan's testimony is the first part of a hearing on Washington representative Pramila Jayapal's Medicare for All proposal that would phase out private insurance companies and move Americans onto single, government-run system that would cover most medical services.

rob delaney

✔@robdelaney

I cried watching this, thinking of my beautiful son Henry and his final weeks at home. Thank you, brave, beautiful @AdyBarkan. I will honor your incredible work & continue the fight for #MedicareForAll. PLEASE watch this in full & RT.

8:35 PM - Apr 30, 2019

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Barkan, unfortunately, won't benefit from any these developments even if they happen. His diagnosis is terminal and he's likely to only live a few more years at most. "Like so many others," he continued, "Rachel and I have had to fight with our insurer, which has issued outrageous denials instead of covering the benefits we paid for. We have so little time left together, and yet our system forces us to waste it dealing with bills and bureaucracy. That is why I am here today, urging you to build a rational, fair, efficient, and effective system."