Ali Chandra, RN, said her son, Ethan, has heterotaxy syndrome, a rare birth defect affecting an individual’s internal organ structure. “Ethan was born with … 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,” Ms. Chandra told CNN.
Under Senate Republicans’ proposed legislation, states would be allowed to seek waivers for requirements that make certain health benefits “essential” and ban lifetime limits on insurance coverage, according to the report. If lifetime limits on coverage are instituted, Ms. Chandra said hospitalizations, prescriptions and medications for children like Ethan may no longer be covered.
Ms. Chandra said with insurance, she’s only required to pay $500 of the $231,115 bill.
“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 wrote in an email statement to nj.com.
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