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I'm Dying Of ALS, And Watching Congress Debate Health Care This Week Gave Me Hope

Ady Barkan with his wife, Rachael King, and their son, Carl.
Ady Barkan with his wife, Rachael King, and their son, Carl.

I wanted to be in Washington this week at the first ever hearing on “Medicare for All” in Congress’ House Ways and Means Committee. Even if I couldn’t argue my case with my own voice, I would have liked to share my story using a synthetic voice, like I did a month ago in the Rules Committee hearing room, in the hope that my experience would compel members of Congress to fix our country’s broken health care system. After that, I would have wanted to rally outside the Capitol with my brothers and sisters in the progressive movement, hearing from people across the country who’ve experienced firsthand the same kind of injustices that I have, at the hands of the pharmaceutical and insurance industries. Instead, I was stuck at home.

ALS is no fun. Before it struck, I was a healthy, happy activist and lawyer living an amazing life with my wife and infant son. Now, I can’t do 95% of what I want to do, and getting on a flight to D.C. is a major undertaking that requires a small army of helpers. I wanted to be there, pushing back on the members of Congress who used the hearing to fearmonger and repeat the lie that Medicare for All is too expensive, too ambitious to afford. But I couldn’t, which is why I watched yesterday’s hearing from my home in Santa Barbara, California.

Watching the Republican members lie about doctor shortages and cost hikes, and wring their hands over the end of the private insurance industry in America, I was struck by how far our movement has come. Not long ago, Medicare for All was a fringe notion, not taken seriously as a potential health care solution by anyone in the media or political establishment. Now, thanks to decades of activism and the principled leadership of progressives like Rep. Pramila Jayapal, Sen. Bernie Sanders and Sen. Elizabeth Warren, we have held three hearings in two months on Capitol Hill, in full view of TV cameras. If the old maxim is true ― first they ignore you, then they laugh at you, then they fight you, then you win ― they’re certainly not ignoring us anymore.

Finally, I watched my friend Rebecca Wood take the mic and deliver powerful, stirring testimony that laid bare the human consequences at stake as we debate health care policy. Her story, as she put it yesterday, is one of “profound policy failure,” beginning with her daughter’s premature birth and encompassing fight after fight with her insurance company, trying to get it to cover essential care for Charlie. It sounded a lot like my own battles with my insurance company, which tried to deny me essential medicine and equipment, and which still refuses to pay for the cost of my round-the-clock home care attendants. Now, that costs me $9,000 per month.

It just doesn’t need to be this way. As Rebecca put it yesterday, she “shouldn’t have had to spend the last seven years fighting the healthcare system” to get her daughter the care she needs. I shouldn’t have had to spend so much of my precious time post-diagnosis on the phone with my insurance company. The truth is, the only people our current system works for are the executives of pharmaceutical and insurance companies, who make an enormous amount of money while so many people like Rebecca struggle to afford the most basic care.

There’s a better alternative, and it’s Medicare for All. Cutting out the insurance industry middleman will result in higher-quality care and enormous savings systemwide, all without the panic of having to worry if something is covered. Most of all, it will mean that we stop thinking about health care as a commodity that some people are too sick or too poor to afford. Instead, we’ll be making a fundamental commitment to one another: that health care is a human right and we all deserve to live with dignity.

My time here is running out, and I can’t be part of everything I want to anymore. But until my last day, I’ll continue to make the case for a better, more fair, more humane society. I know it’s possible, and I believe momentum is on our side. We can win, but only if millions of people have the courage to shed our cynicism and engage directly in the fight for a better future. I invite you to be a part of it.

Ady Barkan is a lawyer and activist who has built three programs at The Center for Popular Democracy: the Be A Hero and Fed Up campaigns and the Local Progress network. He was a law clerk to the Hon. Shira A. Scheindlin in the Southern District of New York and prior to that he was a Liman fellow with Make the Road New York, where he represented low-wage workers seeking to recover unpaid wages and obtain safe and dignified working conditions. He graduated from Yale Law School and Columbia College. He lives with his wife, Rachael, and their young son, Carl, in Santa Barbara, California.

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