EAST FREETOWN, Mass. (WPRI) — Chase Miceli has been on an organ transplant list for 16 months. The 2-year-old boy from East Freetown has a serious congenital heart defect – he was essentially born with half a heart – and for weeks has been bedridden in the Intensive Care Unit at Boston Children’s Hospital.
“He’s relatively stable,” said his father, Michael. “He’s on ECMO, which is a form of life support, which is basically an external heart.”
While his family is concerned about Chase’s current condition, they’re also worried about his future.
Michael Miceli is a nurse and said he doesn’t know what the family would do without the health insurance he receives through his job.
The American Health Care Act, which was approved by House lawmakers earlier this month, does not allow insurance companies to deny coverage to people with pre-existing conditions, such as asthma, diabetes, or heart disease, like Chase.
However, there are loopholes that would enable states to get federal waivers, allowing insurers to set higher rates for people based on their health.
“Your co-payments are already super expensive,” Miceli added. “When he gets older, he will always have this condition. That’s what worries me the most.”
As the Senate reviews and rewrites the GOP’s legislation, Miceli said he’s hopeful lawmakers will remember patients like Chase.
“He is an expensive patient,” he said, “but he needs that care to survive.”
A dozen Republican senators are currently drafting a new healthcare bill, using the House version as a foundation. The new version would require a majority of votes to pass in the Senate.