Two-year-old Ryan Lennon Fines is sitting on his family’s couch flipping through a picture book of emergency vehicles. He’s looking for the motorcycle, but first he stops on the page with an airplane.
“That’s an air ambulance,” his father Scott Fines tells him, “you’ve been on one of those.”
When Ryan was born on Christmas day 2014, his mouth wasn’t connected to his stomach. It’s a condition known as esophageal atresia. After three months in a NICU in St. Louis the family flew to Boston, where Ryan had surgery.
The surgery worked, Ryan is active and can eat normally. But all that time in the NICU was expensive. In the first 6 months of his life Ryan’s insurance was billed $750,000. The family only paid $5,000 of that, Ryan’s maximum out of pocket expenses for 2014 and 2015 combined.
“We were lucky we had a really good employer provided [health insurance] plan,” says his mother Brianna Lennon, who ran unsuccessfully for the Boone County Commission last fall.
Now, the family is worried about Ryan’s future. He’ll still need between $20,000 and $30,000 of medical care every year.
The latest proposal to replace the Affordable Care Act keeps the provision that doesn’t allow insurance companies to deny coverage to people like Ryan with pre-existing conditions. But an amendment proposed by Congressman Tom MacArthur (R-NJ) would let states seek a waiver to allow insurance companies to charge more based on a patient’s health history if their coverage lapses for more than 63 days.
“This would guarantee access to insurance for people with pre-existing conditions in theory, but not really in practice because they could be charged astronomically high premiums,” says Larry Levitt, senior vice president of the Kaiser Family Foundation.
Levitt says before the Affordable Care Act it wasn’t uncommon for the 27 percent of American adults with pre-existing conditions to be charged much higher premiums or denied coverage altogether. If a state decides to waive the protection, called the community rating, this could effectively happen again.
That’s potentially true even though the amendment would also require the states seeking a waiver to set up programs to help people with high healthcare costs. High-risk pools are the most commonly cited type of program, despite mixed evidence of their effectiveness.
Levitt says it’s hard to know which states might apply for a waiver of the community rating although he thinks it would likely be conservative states, like Missouri and the 18 other states that did not expand Medicaid.
Those states, Levitt says, “made a decision to not go along with the Affordable Care Act, and I think that those states are facing a similar kind of decision here.”
Missouri Governor Eric Greitens, a Republican, supported the GOP health plan in March. His office didn’t respond to questions about whether he supported the current version of this bill or if he’d want Missouri to seek a waiver on the community rating.
Those questions may be premature though because it’s unclear if the bill has the votes to clear the U.S. Congress. Representative Billy Long (R-MO) supported the original repeal bill in March, but he made headlines this week when he came out against the latest proposal.
“It’s just common sense people need to have their pre-existing conditions covered,” Long told St. Louis Public Radio on Tuesday. “This [bill] does not allow pre-existing conditions to be covered at an affordable rate.”
But on Wednesday, Long said he was switching his vote to support the bill once again after securing an extra $8 billion to help fund programs for patients with pre-existing conditions.
Scott Fines and Brianna Lennon say it’s too early to decide their family’s future based on the bill, but if it passes, Fines says they’d need to have a “long conversation.”
“We would have to either move to a state that didn’t waive community protections or out of the country entirely if we could,” Fines says.
“I’m not going to risk my son’s health on the political whims of Jefferson City.”