Nina Canaleo wishes she could have known years ago that she would one day be diagnosed with multiple sclerosis. Maybe then she could have better prepared.
Nearly six years ago Canaleo was diagnosed with the chronic nerve disease, which leaves her dizzy and her feet feeling numb all the time. After a recent hospital stay, just walking was a challenge.
“I was just like, ‘Oh, god, I’m not even 40 yet,’” Canaleo recounted. “This isn’t supposed to be happening yet.”
Canaleo, who is 38 and lives in Kansas City, works nights cleaning at a grocery store. She usually works 18 to 25 hours a week, earning about $14,000 a year with no health insurance, she said.
For Canaleo, it’s not enough. But her diagnosis has made it too difficult to return to more strenuous warehouse work that pays more.
Treatment to slow the progression of her illness can cost tens of thousands of dollars. She was excited for Medicaid expansion and voted for it last August. Now she’s angry because state lawmakers refused to fund it in the state budget.
“So every day is worse for me,” Canaleo said. “And then for them to just pull the rug out on that — I don’t think people who dehumanize others should be in any sort of leadership position and deciding my fate.”
Canaleo is among approximately 275,000 Missourians who would qualify for Medicaid if expansion was being implemented. Whether she does or not will ultimately be decided in a courtroom.
A lawsuit filed Thursday on behalf of three Missourians who would have qualified under expansion argued that there is no legal reason to treat people who become eligible July 1 differently from those who are currently eligible.
In anticipation of that lawsuit, The Independent reached out to eligible individuals and health care providers to learn about their expectations for coverage and plans to provide care.
For individuals, coverage meant a chance to seek care without the specter of enormous, unpayable bills. For providers, it means individuals receiving services earlier, at less cost, as well as a chance to receive some reimbursement for services that are currently written off as uncollectible.
At the Iron County Medical Center and affiliated clinics, CEO Josh Gilmore said that amount was about $2.5 million a year. The hospital emerged from bankruptcy in March 2020 and is using federal pandemic relief funds to expand its outpatient clinic.
“We are expanding our rural health clinic because we have no ability to segregate people with Influenza like illnesses, including COVID, from immunocompromised patients,” Gilmore said. “We had been treating people in a tent in the parking lot.”
Medicaid expansion basics
Under the initiative approved by voters last August and now codified in Missouri’s constitution, the state is required to provide Medicaid coverage to people aged 19 to 65 with household incomes less than 138 percent of the federal poverty guideline, or $17,774 a year for a single person.
Under the current Medicaid program, adults without children are not eligible unless they are blind, have another qualifying disability or are pregnant.
Gov. Mike Parson, a Republican, who opposed the expansion initiative, said he had an obligation to follow the will of the voters and asked lawmakers for $1.9 billion — including $130 million of general revenue — to cover the cost. But with only Democrats and a handful of GOP lawmakers in support of the spending, it was not included in the state budget now awaiting Parson’s signature.
In response to that action, Parson announced last week that the Department of Social Services would withdraw the plan it submitted to the federal government. Parson said lawmakers’ refusal to fund expansion meant that it could not occur — prompting the lawsuit filed Thursday.
Attorney Chuck Hatfield, representing the patients in the lawsuit, said he would ask the courts to order the state to provide coverage while the case is pending, a potentially lengthy period that will probably see the litigation end up at the Missouri Supreme Court.
But for now, residents such as Canaleo and health care providers have had to put their plans on pause. While the issue of whether expansion will occur now works its way through the courts, it’s left residents and providers in limbo as they await its outcome.
Impact on providers
In Ripley County in southeastern Missouri, the public health center is often one of the first stops for uninsured residents when they’re having health issues.
“We have people walk in here every day, ‘Can you look at my ear, it’s bothering me. Do I really need to go to the ER or to urgent care? Or is there something I can do?’” said Jan Morrow, the director of the Ripley County Public Health Center.
“We have people like that all the time, that have no insurance and they can’t afford to miss work. They’re in between the cracks as they say.”
It’s been over two years since the only hospital closed its doors in a county where roughly 16 percent of the population was uninsured in 2018 — higher than both the state and national average.
Most residents travel to Poplar Bluff in adjoining Butler County for major treatment at the nearest hospital, or use Missouri Highlands Health Care’s clinics, including their urgent care that opened last year in the closed hospital’s place.
Karen White, CEO of Missouri Highlands Health Care, a Federally Qualified Health Center that providers services regardless of someone’s insurance status, said her team had been gearing up for Medicaid expansion to help serve the estimated 10 percent of their patients that would qualify.
“We were really thinking, ‘Oh my gosh, we’re going to have to add some additional folks. How are we going to pay for that?’ Things like that,” White said. “And then as we were watching the news, we’ve just put those plans kind of on the back burner for right now.”
Typically, between 15 to 20 percent of patients Missouri Highlands serves across seven rural counties in southern Missouri have no access to health insurance, White said. And in three of those counties, including Ripley County, Missouri Highlands is the only source of health care.
Over the last five years, three hospitals have closed in Missouri Highlands’ service area. They succumbed to both a downturn in patient volumes and large amounts of uncompensated care.
The two biggest barriers to health care in the area are transportation and cost, White said. Medicaid expansion would help patients afford care — especially for specialists such as cardiologists and oncologists that Missouri Highlands doesn’t have. Often, even when patients get an appointment for a specialist at a hospital, they can’t afford to make the trip or keep the appointment, she said.
“And so it’s really discouraging when you know that you have tried everything you can to help a patient, and they just can’t afford to take that next step to take care of their health,” White said. “For a portion of that population, Medicaid expansion will mean that they will have access to those specialty services and be able to afford to seek that care.”
White said Medicaid expansion would also help with recruiting physicians to help tackle a provider shortage in rural America that’s been exacerbated by the pandemic. Providers in states that have expanded Medicaid have an advantage, White said, when they can pay more competitive salaries because they have more residents covered, resulting in a stronger payer and more funds.
Ripley County residents are on both sides of the fence when it comes to the issue of Medicaid expansion, Morrow said. With high poverty rates, many residents would be eligible. But 67 percent of the 2,820 county residents who cast a ballot in 2020 voted against it.
Gilmore of the Iron County hospital thinks he understands why rural voters opposed Medicaid expansion despite its benefits for them. The initiative passed with 53 percent of the vote, but no county that cast fewer than 20,000 votes supported it.
“We see a reluctance to vote for it and favor it in the rural areas largely because of historical values,” he said. “There are a lot of ranchers and farmers and folks who have really lived by the code of ‘take care of yourself.’ It is very difficult for a lot of people raised like that to come to an understanding that promoting a thing like Medicaid expansion is not pushing for governmental overreach and invasion of your life.”
As a publicly owned hospital, Iron County Medical Center has a legal obligation to treat anyone. About half of patients are on Medicare, about one-quarter are covered by Medicaid and about 15 percent have private insurance either through work or the health marketplace.
Most of the rest have no means to pay, and that totals about $2.5 million in care for a hospital that has net revenue of $14 million annually.
“What we are going to see is a continued, ongoing increase in uncompensated care, especially at this stage of the pandemic,” he said. “The expectation is we will continue to see people who have no resources, and that will continue to rise.”
‘They should sign up’
Canaleo was finally able to purchase health insurance after a fundraiser helped her cover the costs of a plan under the Affordable Care Act. She’s already put off going to the hospital before to make sure her insurance was in effect.
But her coverage is only temporary, and she’s not sure what she’ll do once the funds to pay premiums run out. The state choosing not to expand Medicaid feels like a kick down, Canaleo said, especially when the funds are there to do it.
“It’s just really expensive,” Canaleo said of her illness. “And this would really just take a huge burden off me.”
Advocates for expansion cheered the advent of the lawsuit and expressed confidence that eligible Missourians would eventually obtain coverage.
Richard von Glahn, the policy director for Missouri Jobs with Justice, an advocacy organization that was part of the coalition that campaigned for expansion’s passage, said his group was encouraging eligible Missourians such as Canaleo to apply July 1.
“People are eligible,” he said, “there’s money there, they should sign up and attempt to access those services.”
There’s also the likelihood applicants who would have qualified under expansion will be denied, something that von Glahn said the organization told those applying.
In the meantime, von Glahn said Missouri Jobs with Justice would continue to encourage Parson to change his decision and refile the state plan with the federal government to implement expansion.
“It is unfortunate when voters have delivered clarity,” he said, “and politicians have caused confusion.”
When Canaleo thinks about the future and the progression of her illness, she thinks about her 6-year-old son, Timothy Ponder. One of their favorite activities is flying kites together.
“And we’d go out and run and race,” Canaleo said. “I’m not ready for that to be over. I’m not ready to be in a wheelchair at all.”
This article by Tessa Weinberg and Rudi Keller is published by permission of The Missouri Independent.