N.J. mom shares 3-year-old son’s $231K surgery bill in TrumpCare protest

A New Jersey mother’s plea to voters and lawmakers Friday about pending healthcare changes caught Twitter by storm after she shared her 3-year-old son’s most recent $231,000 hospital bill for life-saving heart surgery.

Ali Chandra, a registered nurse, wrote that treatment costs for her son Ethan, who has a birth defect called heterotaxy syndrome, “blew past the million dollar mark long ago.”

The insurance coverage needed to pay for Ethan’s treatments is threatened by the recently unveiled Senate version of the GOP-backed healthcare bill, the American Health Care Act, according to Chandra.

“Heterotaxy syndrome literally means different arrangements,” Chandra told CNN on Sunday. “Ethan was born with nine heart defects — nine congenital heart defects. He has two left lungs, five or so spleens of dubious function, and his liver and his gallbladder are down the middle of his body along with his heart, and then his stomach is on the right side instead of the left side.”

The Senate bill would allow states to seek waivers to requirements that make certain health benefits “essential” and ban lifetime limits on insurance coverage, Vox reported. 

“I don’t think most people understand how much of their current healthcare coverage falls under the heading of essential benefits,” Chandra told NJ Advance Media in an email Sunday. “ER visits, hospital stays, prescription medications, lab work, rehab services, pediatric services! I’d challenge you to find a single New Jerseyan who doesn’t take advantage of those benefits themselves or have a loved one who does.”

A Republican congressman from New Jersey — Tom MacArthur, of Toms River — previously authored an amendment allowing similar waivers that was seen as crucial to the passage of the House version of the bill.

“My fear is that this bill comes into play and suddenly essential health benefits are no longer covered — which is things like hospitalizations, prescription medications,” Chandra told CNN. “He will rely on prescription medications for the rest of his life.”

If lifetime caps on insurance coverage return, Chandra wrote in one tweet, Ethan is out.

“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.

Chandra said in an email that she initially thought of her tweets as “venting into the void.” “And then I went to bed and woke up to find that the whole country was talking about my son,” she said.

As of Sunday evening, her original tweet had been retweeted 48,436 times. 

“It’s been interesting to watch the comments roll in; they were initially almost entirely supportive, but as time has gone on it’s gotten more and more savage in my mentions to the point that I’m basically just not looking at them anymore,” she told NJ Advance Media.

“On the flip side, my messages have been flooded with people sharing their own stories of struggle, encouraging me, asking from across oceans whether there’s any way they can help.”

While Chandra said she can understand accusations that she’s using her son to push a political agenda, “what other story do I have to tell than this one?”

“This is our reality, and I think it’s important that the people making the laws come face to face with the people those laws will directly impact,” she said.

Thomas Moriarty may be reached at tmoriarty@njadvancemedia.com. Follow him on Twitter at @ThomasDMoriarty. Find NJ.com on Facebook.

 

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