For the Reyes Serna family, going to the doctor is part of their weekly schedule.
Between 8-year-old Luis’ spina bifida and his twin sister Paulina’s kidney problems, the family had eight medical appointments in February.
Their coverage through Arizona’s 2013 Medicaid expansion and the state’s Long Term Care program helps pay for the appointments, plus more than $600 in monthly medications and medical supplies for Luis.
“When you don’t have these medical needs, you don’t really understand how important Medicaid is,” said Paulina Serna, the twins’ mom.
The Reyes Serna family could lose coverage if the Affordable Care Act is repealed and replaced with the GOP-backed bill, called the American Health Care Act.
They are far from alone. Their plight also epitomizes the prediction policymakers opposed to the expansion in 2013 made – people will either lose their coverage or the state will face a budget crisis if federal dollars propping up the expansion end.
The GOP bill, backed by House Speaker Paul Ryan and President Donald Trump, would effectively halt Arizona’s 2013 Medicaid expansion. And it alters subsidies for those who don’t meet the income requirements for government-provided health care, meaning many who received coverage through the health care exchanges under the Affordable Care Act may not be able to afford their care anymore.
Nearly 400,000 Arizonans could lose coverage by 2023 under the ACHA if it passes as it’s now written, according to an analysis by the Arizona Health Care Cost Containment System.
The agency also projected that a potential enrollment freeze for childless adults on Medicaid would cost the state $118 million in spending in the health care economy in fiscal year 2020, the first year of a presumed freeze, which would balloon to $2.5 billion by fiscal year 2023.
To qualify for Medicaid, Arizonans must be below 138 percent of the federal poverty level. For a family of five in 2017, that’s about $39,000 per year.
Serna works part-time and takes care of the kids, while her husband, Manuel Reyes, works full-time in construction. Neither of the employer-provided options was affordable given the breadth of care the children need, Serna said. All told, their household income for the family of five is about $36,000.
“We make ends meet, one way or another. We don’t have a bad life. But if you take this insurance away from us, we will have a bad life. Things will change significantly for us as a family,” Serna said. “If you take it from us, how are we going to put food on the table?”
Before Medicaid expansion, only Luis had coverage, and the other four members of the family usually paid out of pocket for any medical needs.
But the Medicaid coverage came just in time for Paulina. During a wellness check, her doctor noticed her high blood pressure, which, after numerous tests and specialists, they discovered stemmed from a low-functioning kidney.
Serna said she doesn’t know what the family will do if they lose coverage, but she tries not to spend all day thinking about the possibility.
They’re trying to stock up on catheters, as Luis needs to change out catheters every four hours. And they’re planning visits to specialists like neurosurgeons and urologists now in case their insurance goes away within the year.
“It definitely gives me a lot of anxiety and it’s a stress factor for us as parents not being able to meet our kids’ medical needs. We have to make it work somehow. We just don’t know how yet,” Serna said.
The fate for people like the Reyes Sernas lies at least partially in Gov. Doug Ducey’s hands. Ducey has said he doesn’t want to see Arizonans lose coverage, and he’s not supporting the AHCA as it’s written. He’s lobbying the White House and Congress, hoping for changes that give governors more flexibility and provide a pathway off government insurance.
“What I’m going to advocate for is a bill that allows the insurance markets to come back. We simply can’t transition people off of Medicaid if there’s no insurance provider available,” he said.
If the AHCA passes as is, Ducey will have to make what could be the most difficult decision of his governorship, presuming he wins a second term: Cut off health care for hundreds of thousands of Arizonans or put the state on the hook for nearly a half-billion dollars to keep their coverage.
The dilemma is one that legislative Republicans warned about when Medicaid expansion was moving through the Legislature in 2013 and again when the state restored its KidsCare program last year.
If the federal funding propping up the two programs went away, opponents argued, officials would be faced with pulling the plug on people who received care or blowing a hole in the state’s budget.
U.S. Rep. Andy Biggs, R-Ariz., then a Republican state senator, predicted in 2013 there would be “humanitarian” pressure for Arizona to continue funding the Medicaid expansion program, regardless of the cost to the state. Once a program exists, there’s a constituency that expects to be served, he said.
“As soon as you step in there, it’s permanent, regardless of the level of funding (that) the feds do,” Biggs said in 2013.
Serna said she thinks her family could fare better if Ducey were calling the shots than if the control stays at the federal level.
But Corinne Bobbie isn’t convinced state flexibility would necessarily be better for her family. Corinne and her husband, Joe, have two kids, 8-year-old Sophia and 6-year-old Joey.
Only Sophia has insurance. She has primary coverage through the health care exchanges and secondary coverage through Children’s Rehabilitative Services, an offshoot of KidsCare, the state’s program that covers kids whose parents make too much money to qualify for AHCCCS, but fall below certain income levels.
Sophia was born with complex congenital heart disease, meaning she has five defects in her heart.
“Her heart looks all kinds of wacky,” Corinne said.
She also has heterotaxy, so various organs aren’t in the right places in her body, and she was born without a spleen, so she has no natural ability to help fight off infections.
She has taken amoxicillin every day and had multiple surgeries. She has a plan in place at school if she gets even a slight fever, allowing her to come home and rest. Any infection could spell disaster.
In a good year, Sophia’s medical costs total $20,000 or more, and that cost shoots up significantly if she needs surgery, Corinne said. Corinne has tried to work part-time, but ended up calling in absent frequently to take care of Sophia. She now stays at home with the kids and helps watch her sister’s children.
On the family’s income of $55,000 annually from Joe’s job working at his family’s restaurant, that means money is tight already, even with insurance, Corinne said.
But without the Affordable Care Act, Sophia may not have insurance at all. She was covered through KidsCare until the state froze the program in 2010. Since Sophia has a pre-existing condition, Corinne was worried about finding care for her.
The ACA was signed into law that year, so Sophia found private insurance through the exchanges. She has gotten new plans each year, with slightly higher costs, less coverage, lower subsidies and more restrictions on where it can be used.
For the rest of the family, the cost for private insurance was out of reach, Corinne said.
“We are literally a physical representation of the dichotomy of this entire situation. Because on the one hand, it is the most amazing thing that’s ever happened to us, to be able to have access to this health care. But the other side of it is, we still can’t afford it,” Corinne said.
Even with Sophia’s health insurance, Corinne has racked up about $15,000 in credit card debt paying for medical bills for the two kids.
Since Joe works at a family restaurant, finding private insurance for the few full-time employees was out of financial reach, Corinne said. He took a pay cut for several years so Sophia could qualify for KidsCare, but his pay recently increased, and Corinne thinks the family will make slightly more than the income cap for the program.
Republicans had the opportunity to be the hero by coming up with “something amazing” in the past five years to replace the Affordable Care Act, Corinne said, but she doesn’t think the American Health Care Act will help her family.
“This isn’t a Republican thing or a Democrat thing, this is a people thing. And nobody seems to be concerned about the people. They’re more concerned about being right, and it’s such garbage. Hello, we’re all drowning here, and you’re describing the water. Help us out,” she said.
Still, like Serna, Corinne said she doesn’t want to sit around all day, thinking through a whole list of scenarios that could happen. She’s focused on giving her kids a good life, one that’s as normal as possible for Sophia.
But it’s hard not to think about what could happen, she said.
“We’re talking about people’s lives. If she doesn’t have insurance, she will die. End of story. If she doesn’t get the life-saving care that she needs and deserves, she will die,” Corinne said.