As Senate Republicans are working to rally support for their controversial health care bill, a New Jersey mother opened up about her son’s experience with a rare medical disorder — and the vital insurance coverage that has kept the child alive.
According to CNN, Alison Chandra’s son Ethan has heterotaxy syndrome, a rare genetic disorder that sees organs form on the wrong side of the body. Ethan was born with nine congenital heart defects. He has two left lungs and five spleens that do not function properly. His liver, gallbladder, and heart are in the middle of his body, and his stomach is on the right side instead of the left.
Last week, Chandra posted a photo on Twitter of her son’s latest hospital bill. With insurance coverage, it came to $500. Without it, the bill would have totaled $231,115. As of this writing, the photo has amassed more than 55,000 retweets and counting.
“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.
As Boston.com reports, the proposed health care bill would cut Medicaid reimbursements by billions, and allow states to waive the Affordable Care Act’s standards for coverage of “essential health benefits,” like overnight hospital stays and prescription medications. And on Monday, the non-partisan Congressional Budget Office issued its report on the Republican senators’ proposed health plan, predicting that it would leave more than 22 million without health insurance by the year 2026, The New York Times reported.
Ethan’s medical needs are now covered by his father’s insurance, according to Chandra, but the family has relied on Medicaid in the past. And Chandra worries that some of Ethan’s essential care will not be covered should the legislation come to pass.
“My fear is that this bill comes into play and suddenly essential health benefits are no longer covered,” she told 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.”
“That is why I like to tell our story. Maybe you hadn’t thought of this side before. You don’t picture a 3-year-old with all these fees.”
Learn more about Ethan’s journey here: