When Santa Barbara lawyer-turned-activist Ady Barkan settled in to watch the second round of the Democratic presidential primary debates late last month, he had no idea his story would be part of the heated discussion.
Barkan, 35, who has amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, watched from his wheelchair as Massachusetts Sen. Elizabeth Warren described how he and his family had to raise money online to help pay for roughly $9,000 a month in health care costs not covered by his private health insurance.
Thank you, @ewarren. You are right: this health care system is unconscionable. My family needed #MedicareForAll yesterday. pic.twitter.com/vrXPbD6zmf
— Ady Barkan (@AdyBarkan) July 31, 2019
“The basic profit model of an insurance company is taking as much money as you can in premiums and pay out as little as possible in health care coverage,” Warren said. “That is not working for Americans.”
But for Barkan, the moment was not about him.
“Elizabeth Warren’s point wasn’t just to mention my name, it was to call attention to the ways our broken health care system is hurting people across the country,” he said in an email interview.
Proponents of “Medicare for All” argue that a single, publicly funded insurance plan is the most effective and equitable way to deliver health care to all Americans. The concept, and whether it is politically feasible, is a dividing line among Democratic presidential candidates.
Barkan, a community organizer for the progressive advocacy group Center for Popular Democracy, was diagnosed with the neurodegenerative disease in 2016 at age 32. ALS causes muscles to atrophy, and patients to lose control of their bodies. Eventually, they are no longer able to breathe without assistance from a ventilator.
Barkan had already made a splash on the national political stage a few years earlier because of his campaign to persuade the Federal Reserve to focus on full employment and rising wages.
He and his wife, Rachael Scarborough King, a University of California-Santa Barbara English associate professor, had welcomed their first child earlier that year. As he put it, “life was perfect.” But the diagnosis plunged him into depression as he realized he would likely not live long enough to see his son grow up. People with ALS live an average of two to five years after diagnosis.
His fight for better access to health care began in 2017, when he protested the GOP tax cut bill on the grounds that removing that revenue from the federal government would make it more difficult to fund disability and Medicaid payments.
On the way home from the protest, he ended up on the same flight with former Arizona Sen. Jeff Flake, a Republican, and used the opportunity to have a gentle but pointed conversation about how the bill would devastate families like his. The exchange, captured on video, went viral and landed him more opportunities to share his story. By then, he needed a cane to walk and could no longer hold his baby.
When he was tapped to deliver the opening statement for a congressional hearing on Medicare for All in April 2019, Barkan could no longer speak and delivered his testimony via computer.
Barkan’s delivery at the hearing was stirring, even to some advocates who oppose his aims. Although Grace-Marie Turner, president of the Galen Institute, a public policy think tank that opposes increased government involvement in health care, testified at the same hearing against Medicare for All, she said she came away with great respect for Barkan.
“It is tragic that Ady is afflicted with ALS,” she said. “His ceaseless dedication to his cause and to his family, despite this devastating illness, shows true heroism.”
Barkan now requires round-the-clock home health aides, who account for the $9,000 out-of-pocket cost that Warren mentioned in the debate.
He spoke with California Healthline’s Anna Almendrala about the case for Medicare for All. He responded to email questions with a device that uses lasers to track his eye movements in order to type.
The following interview has been edited for length and clarity.
Q: Why do you think that Medicare for All, which was once considered fringe, is now a major part of the debate among Democratic nominees?
We’re the richest nation in the history of the world, and yet people are going bankrupt from their medical bills. Clearly, people’s frustration with the health care system is reaching a boiling point. Tens of millions of people don’t have any health insurance. Millions more have to fight with their insurance company every day, when those companies try to deny coverage for necessary care.
Q: What did you think about the debate, especially the portion in which candidates were asked about raising taxes on the middle class to pay for Medicare for All?
When I saw the moderate candidates argue that Medicare for All will never pass because Republicans are going to call us socialists, or attack us for raising taxes, that makes me sad. It’s an argument that doesn’t give voters enough credit. Yes, Medicare for All will probably mean a new tax, but that tax will be less, way less, than how much we’re spending on health care bills. Let’s make that argument and treat voters like adults.
Q: What do you think about California Sen. Kamala Harris’ health care plan, which would allow more people to opt into Medicare while also giving private insurers the chance to participate?
It raises a lot of questions for me, like why there’s such a long phase-in to cover everybody, and why Sen. Harris seems insistent on preserving a role for the private insurance industry. One thing I think candidates haven’t had to do so far is make a case for why private insurance companies are good, how they actually make life better for doctors or patients.
Q: While Medicare for All is becoming a more mainstream idea, politically it remains a long shot, even in a state like California. In its absence, what other options would you support?
There are various incremental reforms that would still be important improvements over the status quo. And I am not sure that incremental reforms will be more politically viable than Medicare for All.
The insurance industry will oppose a public option just like they’ll oppose single-payer. So, I guess I don’t really accept the premise of the question. But, putting that aside, I support any solution that gets more people the health care they deserve.
Q: How are Rachael and your son, Carl?
Rachael is enjoying teaching and looking forward to having time off when the new baby comes in November. That’s some news for your readers — she’s pregnant with our second!
Q: How are you doing physically, emotionally and mentally?
ALS is exhausting, infuriating and inserts itself into every moment of my life. I recently lost the ability to drive my wheelchair, so other people have to do it for me. But there are always glimmers of hope.
Very soon I will have access to eye-drive technology, which will allow me to drive my wheelchair with my eyes using my computer.
Q: What does it feel like to see yourself, struggling with a debilitating disease, as one of the most prominent faces of the Medicare for All movement?
I am glad to be able to use my personal tragedy to support transformative change, although I would obviously give up all the attention and accolades in a heartbeat if I could be healthy. I’d much prefer to make impact the way I was before my diagnosis.
This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.