Without Obamacare, what happened to kids like Jimmy Kimmel's son?

Jimmy Kimmel’s intensely personal tale of his newborn son’s emergency -- and successful -- heart surgery came with a potent policy message. After thanking the people who pulled his son back from the brink, he defended the Affordable Care Act against Republican efforts to do away with it.

"Before 2014, if you were born with congenital heart disease like my son was, there was a good chance you’d never be able to get health insurance because you had a pre-existing condition," Kimmel said. "You were born with a pre-existing condition. And if your parents didn’t have medical insurance, you might not live long enough to even get denied because of a pre-existing condition.

"If your baby is going to die, and it doesn’t have to, it shouldn’t matter how much money you make. I think that’s something that, whether you’re a Republican or a Democrat or something else, we all agree on that, right?"

The Affordable Care Act struck a core deal with insurance companies. It required pretty much everyone to have insurance, but in exchange, it forbid insurance companies from denying policies to people with health problem. Republican leaders have said their new bill protects people with pre-existing conditions, but some GOP lawmakers challenge that.

Kimmel’s story raises several policy questions and we’ll unpack them.

Crisis care for newborns before and after the ACA

The health policy experts we reached told us that no matter what, a newborn who needed emergency surgery would get it.

Under the 1986 Emergency Medical Treatment and Labor Act, hospitals must treat and stabilize anyone in a health crisis, regardless of ability to pay.

The first issue is, who would pay the bill?

As with many health care issues, the answer depends on a number of factors.

Both today and before the ACA, if the family’s income is low enough, the child could be enrolled in Medicaid. The federal Children’s Health Insurance Program provided coverage for families making above the poverty line (how much more would vary from state to state), and importantly, as Medicaid analyst MaryBeth Musumeci at the Kaiser Family Foundation told us, "coverage goes retroactive to the month of application plus three months prior."

Musumeci added that if the child had severe, long-term care needs, Medicaid coverage would protect the family from high bills, regardless of income.

But what if the family had no insurance and made too much for Medicaid?

"The hospital and medical providers would bill them directly for their newborn's care," said Georgetown University health policy researcher Sabrina Corlette. "Most people would not be able to afford those bills, which helps explain why medical debt was one of the leading causes of personal bankruptcy, pre-ACA."

The medical bills for the sort of care Kimmel’s baby received would be staggering, and in some cases, the hospital would write off the charges as uncompensated care. Hospitals would fold those costs into their fees to private insurance companies, leading to higher premiums for everyone.

With millions more people insured through the Affordable Care Act, the uncompensated care problem has fallen to its lowest level in decades.

Gerald Kominski, professor of health policy and management at UCLA, said even if the parents had insurance, they might still be caught short.

"The parents might have annual or lifetime limits on benefits, and might exceed those limits rapidly with a seriously ill child, so they’d run out of benefits legally," Kominski said. "That cannot happen under the ACA."

Obamacare prohibited those limits.

The impact on future coverage

Kimmel said with someone like his son, before Obamacare, "there was a good chance you’d never be able to get health insurance because you had a pre-existing condition."

There are a few wrinkles here, but the experts we reached told us that is largely accurate.

When the child turned 18 or whatever age made him a legal adult, insurance companies could deny him coverage.

"The only protection would be if the person lived in a state that prohibited pre-existing condition exclusions," said Kominski.

Another possibility was that someone with a pre-existing condition could get insurance through a high-risk pool, where states would underwrite the cost of insurance for people with significant health issues. But the availability and cost varied from state to state.

So what might happen to the newborn and the family’s coverage while the child was young?

Before the Affordable Care Act, even having insurance was not foolproof. We found two cases where parents saw their newborn’s claims denied because their insurance companies treated the baby’s problems as a pre-existing condition. One took place in Arizona in 2005 and the other in Texas in 2010.

Kimmel said his son would need another surgery before his next birthday and then one more after that. Karen Pollitz, a senior fellow at the Kaiser Family Foundation who specializes in private insurance, told us that unlike the initial crisis surgery, if the parents lacked insurance, the hospital would have no obligation to provide service.

"The hospital is only required to provide care if the baby comes into the emergency room in cardiac arrest," Pollitz said. "Otherwise, it would be considered a scheduled surgery and they would have no obligation to provide treatment."

Pollitz said parents in the non-group market -- the slice of the market now included in the ACA exchanges -- faced another threat.

"They would tend to find that their rates would climb dramatically at renewals," Pollitz said. "The insurance companies weren’t supposed to do it, but they had ways. If you were a parent of a child with a pre-existing condition, it was hard to stay covered. The premiums would become unaffordable."

Under the Affordable Care Act, Pollitz said while rates might rise more broadly, families with an ill child are no longer singled out.

Near the end of his monologue, Kimmel made the point that no child should die because they were born with a dangerous but treatable condition but didn’t have insurance. The facts are that in the moment of crisis, they would be saved.

But without insurance, and sometimes even with insurance, before the Affordable Care Act, the path ahead could be rocky indeed.