Health care laws have a human cost.
The debate surrounding the Affordable Care Act (also known as Obamacare) and the American Health Care Act (also known as Trumpcare) is a deeply personal one, a fact politicians seem to either forget or ignore.
Alison Chandra, a New Jersey mother of a 2-year-old boy with a rare genetic disorder, reminded everyone of what exactly is at stake by sharing her son's staggering hospital bill on Twitter.
I'll save you some math; without insurance we would owe $231,115 for 10 hours in the OR, 1 week in the CICU and 1 week on the cardiac floor. pic.twitter.com/CQ9OjOsFX8— Ali (@aliranger29) June 24, 2017
Ethan Chandra was born with heterotaxy syndrome, which his mother explained to CNN "literally means different arrangement." Those born with the genetic disorder can have internal organs that are "malformed, missing, multiplied, or misplaced."
Chandra told CNN that Ethan had nine congenital heart defects, two left lungs, multiple spleens, and that his gallbladder, liver, and stomach are each in the wrong place. Since his birth he has endured medical operation after medical operation, and Chandra estimates that the total cost is well over a million dollars.
However, the family is able to hope for their son because of their insurance. Thanks to their coverage, Chandra paid only $500 of the recent bill she posted on Twitter, but the passage of the AHCA could change that. The GOP bill would grant states permission to reintroduce annual and lifetime limits on insurance coverage, as well as reduce their essential health benefits requirements. If states like New Jersey decided slash benefits and impose limits, the impact on families like Chandra's would be devastating.
“If this bill is passed, it will depend on how [the New Jersey] government reacts in terms of safeguarding families like ours,” the mother told BuzzFeed. “If lifetime caps are reinstated, we simply won’t be able to afford the out of pocket costs without insurance. We would have to choose between his life and bankruptcy.”
In addition, without federally mandated coverage requirements, the GOP is setting up Ethan and others like him for an even more difficult and dangerous life.
"My fear is that this bill comes into play and suddenly essential health benefits are no longer covered, like hospitalization, prescription medications," Chandra explained to CNN. "He will rely on prescription medications for the rest of his life. He is functionally asplenic and will need to take prophylactic antibiotics the rest of his life to prevent and protect against sepsis, a huge risk of death for our kids in the heterotaxy community."
Since it was posted on Friday, the tweet of her son's medical bill has gone viral, and Chandra said she hopes that it will combat the misconceptions some have about the importance of accessible health care for all. It's not a luxury for Ethan to get these expensive surgeries, but life-saving. For those born with pre-existing conditions, health care has never been about choice.