My Father. My Son. An ACA Diary. (by Sandra Joy Stein)
On the left, Sandra’s father. On the right, her son. [Image description: A split screen shows, left, an older white man with glasses, suit and tie, speaking into a microphone. To the right is an image of a black child wearing a black face mask and a blue jacket.]
March 2007: My sixty-six-year-old father is rushed to the hospital after surviving a fairly major heart attack while living in another country. I fly to the city where he is, assess the cramped and disjointed medical infrastructure and immediately initiate plans to Medevac him home for care. He tells me he does not want to return to the United States for the surgery that could save his life. Thinking he is anxious or heavily medicated, I try to persuade him to consider transferring to the nearest U.S. hospital. He signals for me to lean down closer where he quietly whispers “I’m uninsured.”
“What?!” I nearly yelled at the man who made sure I maintained insurance through my cavalier twenties, no matter how small my mostly gig-based income. He then informs me of a pre-existing condition that made him ineligible for gap insurance once he retired. He tells me that even if we can figure out how to finance the Medevac, he can’t afford the surgery in the U.S. with only Medicare coverage. Even worse, he doesn’t want to be a financial burden to my siblings and me if he survives. He looks at me sternly and whispers, “Just let me die.”
After a week in the intensive care unit of this chaotic overseas hospital, he undergoes the surgery, emergently, and dies on the operating table. The thought that getting him home might have made a difference still weighs heavily on me.
December 2008: My son is born. We name him after my father. He is healthy and beautiful and brilliant.
March 2010: The Affordable Care Act is signed into law.
August 2011: My nearly three-year-old son loves trucks and airplanes and ambulances. While passing a parked ambulance in our neighborhood he says, “You know, Mommy, I’ve never been in an ambulance before.” I reply enthusiastically, “Maybe one day you can see the inside of one!”
Two days later I find my son seizing in bed. My husband calls 911. An ambulance rushes us to our nearest hospital. Within days my son loses his ability to walk and talk and swallow. He is eventually diagnosed with a type of autoimmune encephalitis. We live in hospitals for fifteen continuous months.
Because of the Affordable Care Act (ACA), we do not face the calculus my father confronted. We don’t have to think about the cumulative costs of my son’s multiple life-saving surgeries against a cap of lifetime limits on insurance benefits—which would have been exhausted within the first month of his hospitalization—while making impossibly hard medical decisions.
November 2012: We are finally discharged to provide hospital-level care at home. My son’s disease leads to long-term disabilities and further medical complexities. Because of the ACA, we are able to change jobs to better accommodate his care needs and, even with his pre-existing conditions, insure him when we make the change.
Over time he is able to go to an inclusive, wheelchair-accessible neighborhood school. He builds strong friendships. He participates in adaptive sports and loves adventure. Eventually he is strong enough to enjoy adaptive horseback riding, ziplining, fishing, swimming, and skiing.
October 2020: With healthcare at stake in the upcoming election and in the context of a lethally mismanaged global pandemic, I reflect on the despairing look on my father’s face when calculating the cost of returning home to receive care. I think about the many people who, like my father and my son, will become unexpectedly ill and depend on a robust social contract for healthcare that we must fiercely and collectively protect.
While living in hospitals, we met many families facing sudden, unexpected and life-altering illnesses, accidents, and events, from stroke to car wreck, from fallen tree branch to gun violence, from heart attack to rare disease. What happened to my father, to my son, and to our fellow hospitalized families--and what is happening right now to many Covid survivors facing long-term health complications and disabilities--could happen to any one of us at any time. I am profoundly thankful that, thus far, we have not had to make the impossible calculations for my son’s care that my father made regarding his.
Without a trace of hyperbole, I know that my son’s life depends on strengthening the social contract that the ACA represents, rather than further unraveling it.
This November, protect your children. Protect your parents. Protect yourself. Protect my son. Vote.
In loving memory of Robert G. Stein
Sandra Joy Stein is a writer and educator. Her most recent New York Times article can be found here.