The mother of a young boy with a rare disorder is speaking out about the Senate Republicans’ proposed health care bill, which would give states the ability to reinstate a lifetime “insurance cap” — an act that would devastate her family.
Alison Chandra’s 2-year-old son, Ethan, was born with a rare condition called heterotaxy syndrome.
According to the Children’s Hospital of Philadelphia, the beginning of the word (hetero-) means “different” and the end (–taxy) means “arrangement.”
Quite literally, heterotaxy syndrome results in one’s organs growing in a different arrangement than they are supposed to.
In Ethan’s particular case, his heart is badly malformed, he has two left lungs and around five spleens, his stomach is located on the right side of his body instead of the left, and his liver, gallbladder and heart are all aligned down the center of his torso.
On Friday, Chandra took to Twitter to explain why the Better Care Reconciliation Act would be a death sentence for Ethan — and her series of tweets has since 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 an astronomical bill.
Chandra calculated that she would have had to pay $231,115 out of pocket for her son’s surgery without help from insurance, a bill impossible to foot by the average American.
And that was just for one procedure. As Chandra points out, patients like her son often need countless operations and prescriptions to keep them 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,” Chandra wrote. “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.”
The former nurse, who had to stop working after her sick son was born in order to take care of him, continued on to say that without the help of insurance, her family could ultimately be faced with an impossible decision — bankruptcy or their son’s life.
“If this bill is passed, it will depend on how NJ government reacts in terms of safeguarding families like ours,” Chandra told BuzzFeed News in an interview. “Worst case scenario, Ethan will lose coverage or his coverage will become unaffordable (which is the same thing).”
Chandra says her family’s ultimate fallback plan is to move to Canada to seek care for her son, since her husband is a Canadian citizen.
But even then, Ethan would have to leave his long-time physicians who have a deep understanding of the way his particular case of heterotaxy syndrome needs to be treated.
Chandra also argued that the health care bill could mean death for people in similar situations that have no such backup plan.
“A lifetime cap on benefits is the same as saying, ‘Sorry, you’re not worth keeping alive anymore. You’re just too expensive,'” she wrote.
“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.”
“Tell that to the boy who picks me bouquets of sticks instead of flowers because he loves them better so he’s sure I will too.”
“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,” she ender her emotional plea. “I dare you.”