The mother of a young boy with a rare disease is speaking out about the Republicans’ proposed health care bill, which would give states the ability to reinstate a lifetime “insurance cap.” According to Alison Chandra, that bill would devastate her family.
Chandra’s 2-year-old son, Ethan, was born with a rare disorder known as heterotaxy syndrome. As explained by the Children’s Hospital of Philadelphia, the “hetero” stands for different, and the “taxy” means “arrangement.” So, literally, heterotaxy syndrome consists of one’s organs growing in a different arrangement than they are supposed to.
It’s clear that Ethan needs to have access to health care, and the Better Care Reconciliation Act would bring devastating effects to him. To illustrate the urgency of his case, Chandra shared a photo of her son’s astronomical hospital bill.
Chandra shared her son’s astronomical bill: It would be impossible to pay without insurance
Ethan’s case is particularly tricky because his heart is malformed, he has two left lungs, and around five spleens, his stomach is located on the right side of his body, and his gallbladder, heart, and liver are aligned down the center of his torso.
On Friday, Chandra posted on Twitter the photo of the astronomical hospital bill, as well as an explanation of why the bill would be a death sentence for Ethan. Her tweets since have gone viral.
“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,” she wrote alongside a photo of the bill.
She calculated that she would have had to pay $231,115 out of her own pocket for her son’s surgery without help from insurance, a bill next to impossible to pay by the average American. And that bill only accounted for one procedure. As Chandra points out, patients like Ethan often need many operations and prescriptions to stay alive.
“He’s had four of these surgeries, some more involved than others. The one before this had him in the CICU for three weeks,” she tweeted. “We’re hopeful that going forwards he’ll need fewer and smaller surgeries, but this was not the last time they’ll open his chest.”
‘Lifetime cap on benefits is the same as saying: sorry, you’re not worth keeping alive anymore’
Chandra, a former nurse who had to stop working to care for her son, continued tweeting and explained that without the help of insurance, her family could be faced with an impossible decision – bankruptcy or Ethan’s life.
She told BuzzFeed News that if the bill is passed, it will depend on how NJ government reacts regarding safeguarding families like hers. She believes that in the worst case scenario, Ethan will lose coverage or it will become unaffordable, which is the same thing.
Chandra also said that her family’s ultimate fallback plan is to move to Canada to seek medical care for her son since Ethan’s father is a Canadian citizen. However, even then her son would have to leave his long-time physicians who are familiarized with his particular case of heterotaxy syndrome.
Furthermore, she noted that the health care bill could mean death for people in similar situations who don’t have backup plans like her family.
“A lifetime cap on benefits is the same as saying, ‘Sorry, you’re not worth keeping alive anymore. You’re just too expensive,’” wrote Chandra. “Tell that to the boy who just tucked a sick firefly into bed with a leaf blanket and told me to keep the light on so he wouldn’t be scared.”