Entrepreneurs Keely Edgington and Beau Williams, owners of a Westport bar called Julep, say that the Affordable Care Act has been an easy, inexpensive way for them to get health insurance.
Having insurance has been critical for the married couple. Their daughter Lula was diagnosed with cancer in 2016 when she was nine months old. Even with insurance, the family needed help from friends and family to pay her medical costs.
Shortly after the 2016 election, Edgington said she was terrified by the possibility of losing insurance that covers her daughter’s pre-existing condition.
“Do we have to move to Canada and hope we get coverage there? That’s really extreme, but what wouldn’t you do for your child’s life?” Keely says.
One of Donald Trump’s biggest campaign promises was to repeal and replace the Affordable Care Act. The pledge thrilled conservatives, but it set off alarm bells for families like Edgington’s.
For them, and millions of others who depend on the Affordable Care Act, 2017 was a rollercoaster, as Republicans in Congress engaged in a series of attempts to repeal and replace it.
Jerry Jones, executive director of the Community Health Council of Wyandotte County, says the fate of the law became a fixation in the council’s offices.
“Let’s just say that C-Span was on a lot of different computers during that period of time,” Jones says. “It was a stressful time. It was, is this going to be bill that kills the ACA, and what will that mean for the people who live and work here in Kansas City?”
In the end, Republicans weren’t able to repeal the law, but the Trump administration was able to make some changes.
Saint Louis University School of Law health law professor Sidney Watson says one of the most significant of those was getting rid of cost-sharing reduction payments. Those are payments the federal government makes to insurers to offset the cost of covering out-of-pocket costs for low-income people.
“We didn’t know what the insurance companies were going to do,” Watson says. "What they did was pass those costs along to people in the form of higher premiums on marketplace plans.”
In Missouri, insurers increased the cost of their plans by an average of 39 percent. However, the nearly 90 percent of Missouri marketplace customers who were eligible for government subsidies were shielded from the increases.
“The way the formulas and the funding worked, and the way all of this was set up, they ended up getting actually better deals on their premiums,” Watson says. “Across the state in most counties, premiums for people with premium tax credits went down 10 percent.”
The Kaiser Family Foundation estimated in April 2017 that the federal government would save about $10 billion dollars in 2018 by getting rid of the cost sharing payments. But because the cost of the higher subsidies will exceed those savings, Kaiser estimated the government would end up paying out $2.3 billion more. And that cost is expected to go up every year.
“It looks like overall it’s going to be more expensive to cover this in the premium costs, so there’s certainly a cost to us as taxpayers and to the federal government,” Watson says.
The Trump administration also reduced the promotional and marketing budget for open enrollment by 90 percent and halved the enrollment period to six weeks.
Even so, the final enrollment numbers for 2018 in Kansas and Missouri were similar to those for 2017.
The Centers for Medicare and Medicaid Services boasted the relatively high enrollment was due to its increased efficiency, but Jerry Jones of the Community Health Council has a different take.
“It tells me that the ACA is popular despite what we might hear from individuals seeking political office,” Jones says. “The people have said the ACA is something that we want.”
While the ACA remains the law of the land, Congress scrapped the individual mandate as part of the tax overhaul it enacted in December. Starting in 2019, people will no longer be required to have health insurance.
The Congressional Budget Office estimates that will lead to 13 million fewer people having health insurance by 2027 as healthier people drop out of the market. As a result, insurance market premiums are expected to go up by about 10 percent each year in the coming decade.
But Sidney Watson disagrees with the president’s claim that the end of the individual mandate effectively means the end of the law.
“The Congressional Budget Office also says that they expect the individual and small group markets to remain stable, to remain viable,” Watson says. “They’re just going to be more expensive.”
More than a year after the election, Keely Edgington’s family has been through some significant changes itself. For one, they welcomed a new daughter, Adair Rose.
And their daughter Lula?
“She’s now considered ‘no evidence of disease’ – NED – as of May 15th,” Edgington says. “That means she’s considered in full remission. The cancer in her body is totally dead.”
Although Lula is in remission, she still needs expensive follow-up care, and the family is again having to turn to friends and family to help pay their deductibles.
After more than a year of fretting about the future of her family’s health care, Edgington says she’s beyond frustrated watching political antics that at times have seemed to her to be surreal.
“The reality that we live in is so laughable,” she says. “It’s hard sometimes to take it seriously.”
Still, she acknowledges that her outlook has improved somewhat from a year ago.
“I guess I feel a little bit better,” Edgington says. “I’ve got two healthy kids. That’s a new feeling for us.”
Correction: An earlier version of this story had the wrong university affiliation for Sidney Watson. She is with Saint Louis University.
Alex Smith is a health reporter for KCUR. You can reach him on Twitter @AlexSmithKCUR.