In the back of Doug Sample’s van at his home in Davenport, is a broken wheelchair lift.
Sample, 61, has multiple sclerosis (MS), an autoimmune disease that affects his nervous system and causes extreme fatigue. He's had the disease since his early 20s, but he’s only been in a wheelchair full time for about five years following an infection in his left shin.
The automatic lift helps him easily get into the back of the van, which is driven by a home health aide. But the lift has been stuck since last fall. It makes a loud screeching noise when Sample hits the button to move it.
“I have to actually stand up and lift and pull,” he said.
Sample filed a request for Molina to fix or replace the lift last year. Molina is the private insurance company, also known as a managed care organization (MCO), that oversees Sample’s Medicaid coverage for the state.
But Molina rejected his request this spring, saying it was not responsible for maintaining the lift, Sample said.
This year marks a decade since Republican Gov. Terry Branstad used his administrative powers to privatize Iowa’s Medicaid system in 2016. Branstad said contracting with MCOs like Molina to manage nearly all of its Medicaid population would make the system more efficient for low income and disabled residents while saving the state money.
But opponents say hiring for-profit companies has been a failure, and the system’s future has become a campaign issue in Iowa’s highly competitive gubernatorial race this year.
‘They never dragged on for this long’
Sample appealed Molina’s decision this spring, after reading through the company’s contract with the state.
"There is a line item right at the top that they are required to provide home and vehicle modifications for person's safety,” he said. “And in this case, safety means getting to my doctor's appointments.”
But he said he’s been waiting months for Molina’s response to his appeal. Molina did not respond to requests for comment for this story.
Over the years, Sample said he’s had to wait months, or even years, for various MCOs to cover equipment repairs, medications and services like physical therapy.
Sample said it’s not uncommon that he feels he has to request a hearing in front of an impartial administrative law judge following the denial of an appeal by his MCO. In 2023, a judge ruled Wellpoint, Sample’s MCO at the time, was required to replace another wheelchair lift in his home. The entire process took four years, he said.
“What time I have, I could be doing something enjoyable,” he said. “I can't, because every last bit of mental energy I have goes into keeping my healthcare from getting cut out from under me.”
Before privatization in 2016, the state processed Sample’s claims directly in a system called fee-for-service. He said he still had to deal with rejections and appeals, but he felt the process moved a lot faster under the state and didn’t take up so much of his time and limited energy.
“There were definite serious mistakes, but they never dragged on for this long. I didn't have to take them to court four or five, six times a year. I didn't have to request hearings in front of a judge,” he said.
Medicaid's future
The managed care model, or privatization of Medicaid, started back in the late 1960s in California. It was a way to try to make state Medicaid spending more predictable by paying private companies a set amount of money per Medicaid recipient.
Most states currently use MCOs to manage at least some of their Medicaid population, according to the nonpartisan health policy think tank KFF.
“Once a contract is signed for a year and the rates are set, there's very little change and there's very little unpredictability for a state,” said Andy Schneider, research professor of the practice at the Georgetown University McCourt School of Public Policy.
But research overall has produced mixed results on how the managed care model has impacted healthcare quality and costs, he said.
Iowa’s managed care system has been plagued with turnover and controversy since its start. Critics include disability rights groups and Democrats, who have said the state’s for-profit MCOs have prioritized their profits at the expense of patient care.
This spring, Republican lawmakers introduced a bill that would have codified Iowa’s current Medicaid system, but that provision failed to pass in the final bill. This means the state’s next governor would likely have the authority to make major changes to Iowa’s Medicaid system, as Branstad did.
Democratic gubernatorial candidate Rob Sand, one of the system’s most vocal critics, has made this one of his campaign promises.
“Ten years of privatization has increased costs for everyone and gotten worse healthcare for Iowans, and I think it's time at that end,” he said in an interview with IPR.
As state auditor, Sand released several reports that were critical of the state’s MCOs, including one that found improper denials for services spiked nearly 900% under their management. State officials pushed back on his methodology, and Sand said when he took their comments into consideration, the number of improper denials was still up about 500%.
As governor, Sand said he would not renew the contracts of Iowa’s three for-profit MCOs — Iowa Total Care, Molina and Wellpoint. He said he still wants a managed care system but is figuring out what that would look like.
“There's a lot of different models around the country. It could be an accountable care organization. It could be a variety of different nonprofits, any number of things,” he said.
But Sand’s Republican opponent Zach Lahn, a businessman and farmer, said he would rather find ways to improve the current system, which could mean enacting additional regulations.
“There are more protections that we can put in place to make sure Iowans are getting great care, and they're getting the protections that they deserve,” Lahn said in an interview with IPR.
Lahn is concerned about practices like the use of artificial intelligence to evaluate claims and healthcare companies that are vertically integrated, meaning they own multiple pieces of the health system.
“We need to make sure that we are not using MCOs that are vertically integrated. You can't own the providers. You can't own the pharmacies. You have to have real competition in the markets,” he said.
Change could be disruptive
Some worry major changes to Iowa’s Medicaid system could cause a lot of disruption for patients and hospitals.
The Iowa Hospital Association (IHA), which represents the majority of the state’s hospitals, initially strongly opposed Medicaid privatization and unsuccessfully sued the state to stop it, fearing hospitals would lose money. But Chris Mitchell, the organization’s president and CEO, said the state has improved the system in the last decade.
“Any drastic change to the current program is going to create the exact same issues that we dealt with 10 years ago, which is change in payment structure, administrative burden, potential delays in delivery of care,” he said. "I'm not sure that's the right road to go down at this point."
The IHA is prepared to work with whichever candidate wins the election this November, Mitchell said.
“I think we've got to think about, how are we going to continue to improve this program? What is the opportunity in front of us?” he said.
Christie Cellman is also paying attention to the upcoming election. Cellman, who uses they/them pronouns, has a genetic muscle disorder that causes progressive weakness. They’ve been in a wheelchair for more than a decade.
Cellman had to pause pursuing a doctorate in social work at the University of Iowa last summer after their MCO cut the number of hours they could pay a home health aide by about two-thirds, with no clear route to appeal. Shortly after, Cellman's fiancé, Marc McIntire, suffered two spinal epidural abscesses that ruptured, which left him in a wheelchair and unable to help care for Cellman.
Cellman has been relying on volunteers in the Iowa City area to help them with daily activities, like going to the bathroom or getting out of bed, and is uncertain when they’ll go back to school.
They’ve been sleeping in their wheelchair, which irritates their pressure wounds, Cellman said. They would like to see the next Iowa governor get rid of the state’s current MCOs.
“I mean, every single change that is taking place, and it has taken place since privatization, has been focused on profit and how they can save a few bucks," Cellman said. “And I don't know, it's just disappointing.”
