Ady Barkan, in wheelchair, and Cristina Jiminez, left, lead a group of Deferred Action for Childhood Arrivals (DACA) supporters through Los Angeles on January 3. (AP Photo / Reed Saxon)
I have ALS, a deadly, incurable neurological disease that is paralyzing my whole body, including my diaphragm. This makes it difficult for me to breathe while lying flat in bed. This month, my doctor prescribed me a Trilogy breathing-assistance machine, which would solve the problem (at least for now). Yet my insurance, Health Net, denied coverage, calling it “experimental.”
But Trilogy is normal standard of care. The doctor’s office told me they had never seen it denied in more than six years of prescribing it. I’m not alone in having my time and energy wasted; millions of Americans have had similar experiences with their insurance provider. Many have suffered or even died, because they didn’t get the care to which they were legally entitled. And, if we don’t fundamentally change our health-care system, there will be many more deaths. Instead of focusing on providing quality care, our system prioritizes shifting costs and maximizing profits.
But what if we had a system where all appropriate care was paid for smoothly and without struggle? We could save enormous amounts of time and money, allow doctors to do their jobs, and let patients focus on living more dignified and fulfilling lives.
My complaint about the denial of coverage on Twitter went a bit viral. I asked the Twitterverse what I should do about the problem: start a petition, file a complaint with the insurance commissioner, or maybe hold a protest. (The vote was a tie between launching a petition and filing a complaint.)
In the end, none of the options was necessary. Health Net called my doctor’s office. “We made a mistake,” they said. The machine will be covered.
I’m glad the problem got resolved. I’m looking forward to breathing and sleeping better at night. But I am outraged about this health-care system. There is zero chance Health Net would have moved so quickly if I didn’t have a Twitter following.
Millions of Americans are denied care every year. Few of them have megaphones to intimidate large companies into quick action. And so they suffer and spend their precious hours fighting with profit-seeking, opaque bureaucracies.
So I have some questions for Health Net about what the company did to me and what it is doing to its other customers. I believe it has a moral obligation to all of us to answer these questions publicly.
You can tell from the evolution of my questions, I believe that Health Net’s behavior is a symptom of a broader sickness not just in our health-care system but in our political economy. The flaws in the for-profit health industry derive from and exemplify the most inhumane aspects of capitalism: how the constant pursuit of lower costs and higher revenue incentivizes the erasure of the individual, and of her dignity, from the firm’s consideration. And thus from consideration by the body politic.
It’s an unjust way to run a health-care system. It’s an unjust way to run a country.
And the Republican Party is trying to make it worse. Republicans spent all of 2017 trying to deregulate the health-insurance industry, making it even easier for companies to abuse consumers. Their tax scam kicks out one of the three legs of the ACA stool—the individual mandate, which requires people sign up for insurance—and destabilizes the entire system by removing 13 million people from coverage. And just last Thursday, the Trump administration announced that it would impose unreasonable work requirements for people who need Medicaid—a backhanded way to make it harder for people to access benefits.
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Americans are outraged. We see what is going on. More than at any other point in my life, the American people are ready for significant change to our economy and our politics. This year, millions of us will take to the streets and the halls of Congress to demand a very different country. We will say #HandsOff our Medicare, Medicaid, Social Security, and food stamps. We will work indefatigably for a #BlueTsunami2018. And then, throughout 2019 and 2020 we will resist, organize, and vote. In 2021, when we have built the foundation for a political revolution, we will win #MedicareForAll and end this inefficient, for-profit health-denial system. And then we will start to roll back the power of money in our democracy.
Through this collective struggle, we will transcend our individual limitations. And we will all breathe freely soon.
Ady BarkanTwitterAdy Barkan is the founder and co-executive director of Be A Hero, a political advocacy organization fighting for health care justice. He was diagnosed with A.L.S. in 2016 and the author of Eyes to the Wind.