Toddler’s Staggering Hospital Bill Shows Just What’s At Stake In Obamacare Battle
"It seems like our kids are being reduced to a line in a budget." For this mom, the health care debate is personal https://t.co/UnvwT5VeXl pic.twitter.com/V61xBetXRQ
— CNN (@CNN) June 26, 2017
When it comes to healthcare, politics is “always personal.” That’s the message from one New Jersey mom who, as lawmakers wrangle this week with an Affordable Care Act replacement bill, has opened up about how such legislation could impact the life ― and survival ― of her young son.
Two-year-old Ethan Chandra was born with heterotaxy syndrome, a rare genetic disorder that can lead to the malformation or abnormal arrangement of internal organs. His mom, Alison Chandra, told CNN on Sunday that Ethan was born with multiple congenital heart defects, two left lungs and multiple spleens. His liver, gallbladder and stomach are all not in the right place.
The toddler has endured a slew of medical procedures since he was born, including multiple heart operations. On Friday, Chandra shared on Twitter the hospital bill for her son’s most recent surgery ― an open heart procedure.
Thanks to their insurance coverage, the family had to pay $500 for the surgery. The total amount due had been more than $200,000, Chandra said.
It seems fitting that, with the #TrumpCare debate raging, I got this bill in the mail today from Ethan's most recent open heart surgery. pic.twitter.com/pyUE2UxbWW
— Ali (@aliranger29) June 24, 2017
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
In an ensuing Twitter exhange, Chandra explained how insurance has helped the family cover her little boy’s mounting medical expenses ― which she said has long surpassed the million-dollar mark.
We've had two of those already this year. pic.twitter.com/zKhw4StSBx
— Ali (@aliranger29) June 24, 2017
The surgeon who created what we call Ethan's "Picasso heart," shaping 4 chambers from the 2 he was born with, is several states away.
— Ali (@aliranger29) June 24, 2017
We also regularly see a local cardiologist, and electrophysiologist for his pacemaker, a pediatrician, & immunology for his polysplenia.
— Ali (@aliranger29) June 24, 2017
He takes 5 different prescription medications multiple times a day. All of this adds up. None of this would be possible without insurance.
— Ali (@aliranger29) June 24, 2017
He blew past the million dollar mark long ago; I haven't even mentioned the ER trips for sepsis workups every time his temp goes above 100.4
— Ali (@aliranger29) June 24, 2017
Referring to the health care bill the GOP unveiled last week, which allows states to reintroduce annual and lifetime limits on insurance coverage, Chandra expressed deep concern how such a change could impact her son.
A lifetime cap on benefits is the same as saying, "Sorry, you're not worth keeping alive anymore. You're just too expensive."
— Ali (@aliranger29) June 24, 2017
Since her tweets on Friday, Chandra’s story has gone viral.
The mom has been using the media attention as an opportunity to share the stories of other families whose lives would be fundamentally altered by an ACA repeal.
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You should read this thread. Politics are always personal. https://t.co/GM9LpMAnGQ
— Ali (@aliranger29) June 27, 2017
You're going to want to read this whole thread from another #heterotaxy mama. She's put into words so much of what I've been wanting to say. https://t.co/x2knObXFzr
— Ali (@aliranger29) June 26, 2017
That is what this has always been about. I want her to know I fought like hell just like she fought like hell to be here. pic.twitter.com/PnwpeBflpg
— Rebecca Wood (@woodra) June 25, 2017
She chose life. This is beautiful.https://t.co/bOiFp2M5hM pic.twitter.com/4Nbta586G4
— Ali (@aliranger29) June 26, 2017
The Congressional Budget Office released a report Monday showing that 22 million fewer people would have health coverage over the next decade under the proposed GOP health care bill compared to coverage under the ACA.
Chandra said she hopes lawmakers will consider children like Ethan as they decide what to do next.
Look my son in the eyes and tell him that he's fought so hard to be here but sorry, you're just not worth it anymore. I dare you. pic.twitter.com/IgdQOounyB
— Ali (@aliranger29) June 24, 2017
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This article originally appeared on HuffPost.