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.
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.
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.
“If this bill is passed, it will depend on how [the New Jersey] government reacts in terms of safeguarding families like ours,” Chandra 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.”
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.
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.
