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This 3-Year-Old's Life Is Too Expensive for Mitch McConnell

Lifetime caps on coverage is the same as saying, "Sorry, you're not worth keeping alive anymore. You're just too expensive."

Amber Brenza

Image: Alison Chandra / Twitter

Efforts to repeal the Affordable Care Act—including the recent Senate and House bills to dismantle it—have been commanding our attention for months. That information overload can tempt many well-meaning people to tune out. But one New Jersey mother is trying to snap people out of their complacency with one shocking photo: Her son's most recent hospital bill.

Alison Chandra tweeted the photo—a bill from her son Ethan's most recent open heart surgery at Boston Children's Hospital—when she got it in the mail on June 23. In all, the surgery would have cost the family $231,115; but because they're covered by health insurance, they only owe $500.

It wasn't the first serious surgery for Ethan, who suffers from heterotaxy syndrome, a rare, genetic disorder which causes internal organs to be malformed, missing, multiplied, or misplaced. Ethan was born with nine congenital heart defects, has two left lungs, and five spleens; his liver, gallbladder, heart, and stomach are all in the wrong place, Chandra told CNN. He's just shy of three years old (his birthday is July 1), and he's already had four open-heart procedures.

Along with those surgeries, Ethan also takes five different prescription medications multiple times a day, and has standing appointments with a cardiologist, an electrophysiologist for his pacemaker, a pediatrician, and an immunologist for his polysplenia (more than one spleen); a pulmonologist will be added to that list in the fall. None of this care—the surgeries, the medications, the appointments—would be possible without insurance that doesn't have annual or lifetime limits. "Reinstate lifetime caps and he's out," she wrote. "He blew past the million dollar mark long ago."

According to Chandra, Ethan is currently covered by his father's employer-sponsored insurance; but prior to that, Ethan's prenatal care and first two surgeries were paid for through Medicaid—a program that the Senate bill would gut.

But Ethan's coverage under his father's plan doesn't ensure he'll be unaffected by the repeal of Obamacare. The Better Care Reconciliation Act, the Senate Republicans' plan to repeal and replace Obamacare, also allows states to waive the that law's standards for insurance requirements, including "essential health benefits," like inpatient and outpatient hospital care and prescription drug coverage. The Senate bill would effectively give states the option to reinstate annual and lifetime caps on coverage, which "is the same as saying, 'Sorry, you're not worth keeping alive anymore. You're just too expensive,'" Chandra said on Twitter.

The photo of Ethan's bill has been retweeted more than 57,000 times as of Wednesday morning; while many have reached out to Chandra offering financial support for Ethan's treatment, she's declined because they have insurance and don't need help—instead, she's asking people to fight to help keep the coverage they already have.

And as a final plea to Republican voters and Senators, Chandra had this to say: "If you call yourselves pro-life, you need to fight for life from beginning to end. That's what Ethan's doing, what we're doing. Join us."

Read Alison and Ethan's story here.


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