A social justice activist, who is dying from amyotrophic lateral sclerosis — known as ALS or Lou Gehrig’s disease, urged members of Congress Tuesday to implement “Medicare for All” and shared how his family has been impacted by his diagnosis.

Ady Barkan, who helped start three programs at The Center for Popular Democracy including the Be A Hero campaign, spoke using a computer-generated voice to the House Rules Committee at the invitation of chairman Rep. Jim McGovern, of Massachusetts. The Santa Barbara, California, resident was diagnosed with ALS three years ago at the age of 32.

“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,” he told members of Congress.


Barkan estimated that despite having “comparatively good” private health insurance, he and his family have to pay $9,000 a month out of pocket to cover the nearly 24-hour home care his degenerative condition now requires.

“Our time on this earth is the most precious resource we have,” he urged. “A Medicare for All system will save all of us tremendous time. For doctors and nurses and providers, it will mean more time giving high quality care. And for patients and our families, it will mean less time dealing with a broken health care system and more time doing the things we love, together.”