Tulsa resident Kelly Smalley never imagined she would be a part of such an important movement.
Before she became a proponent on an initiative petition that gave voters the chance to expand Medicaid, Smalley said her job was "just being a single mom." She's spent over two decades caring for her adult son, Nick, who was born with serious conditions like spina bifida and clubbed feet.
She couldn't hold down a steady job because he was in and out of the hospital.
The stress took a toll. Smalley started having seizures and was diagnosed with adult-onset epilepsy and multiple sclerosis, which interrupts communication between the brain and the rest of the body. When her son graduated from high school, she lost her Medicaid because he was no longer considered a dependent.
It took her years to get approved for disability and regain coverage.
"I was scared, if something happened, [of] going to the ER and ending up with a huge bill I couldn't pay," she said. "I was nervous about not being able to get my meds and not being able to get my seizures under control, or my MS would just get really, really bad."
She agreed to share her story, becoming a voice for State Question 802, which voters narrowly approved in 2020 and went into effect in 2021. It expanded Medicaid eligibility to adults making up to 138% of the poverty level, or $22,025. Today, that includes 233,530 low-income Oklahomans.
That eligibility cannot be adjusted because the ballot initiative enshrined Medicaid expansion in Oklahoma's constitution. The state is one of three where advocates sought to prevent lawmakers from rolling back the measure. Changes would require an additional vote of the people.
Less than five years later, that's exactly what Oklahoma Republicans are trying to get.
"I never thought about the fact that they could turn around and just try to take it away again," Smalley said.
Republicans are concerned about the state's bottom line. They want to send Medicaid expansion back to voters so lawmakers can have more control in addressing spending. But medical and policy experts worry the effort is shortsighted.
Efforts to remove expansion from the constitution
Gov. Kevin Stitt signed an executive order Jan. 26 requiring a review of state-administered welfare programs, including Medicaid, in an effort to move Oklahomans "from welfare to work and self-sufficiency."
Days later, the Oklahoma Health Care Authority presented a request for a nearly $500 million budgetary increase for the next fiscal year.
In February, Stitt demanded changes to Medicaid expansion during his final State of the State address. He called on lawmakers to send a state question to voters, saying coverage should be protected "for those who really need it, not those who should be working."
"I always say government programs should be a trampoline, not a hammock, but too often that is not the case," Stitt said in February. "Medicaid is Exhibit A — driving massive spending growth while enabling waste."
Lawmakers responded with House Bill 4440 and House Joint Resolution 1067.
HB 4440 by House Speaker Kyle Hilbert, R-Bristow, and Senate Pro Tem Lonnie Paxton, R-Tuttle, would ask Oklahomans to decide whether to remove Medicaid expansion from the state constitution and add it into statute, where it can be amended or repealed, if federal financial participation drops below 90%.
Currently, the federal government covers 90% of the costs of Medicaid expansion. States fill in the remaining 10%.
The state question would also ask voters to remove the portion of Oklahoma's constitution saying the Medicaid expansion population cannot face additional restrictions on eligibility than other enrollees.
The 90% match rate isn't currently under threat. But last year, congressional Republicans considered reducing Medicaid spending by lowering the federal match for expansion. If they had, states would have been tasked with filling the gap.
"I think it's incumbent upon us as legislators to be proactive, not reactive, when it comes to Medicaid and all of these issues," Hilbert said.
HJR 1067 by Rep. Ryan Eaves, R-Atoka, and Sen. Julie Daniels, R-Bartlesville, would allow lawmakers to choose not to cover expansion if the federal match rate decreases. If approved, it would be up for consideration on the November general election ballot.
Paxton said in April the goal isn't to unravel expansion.
"There is no desire from me or anybody I've talked to in this building to repeal Medicaid expansion," he said. "Simply, we need the ability to manage the system a little bit better than what we can right now."
Both measures are awaiting a House hearing. Lawmakers tried several times to get HB 4440 on the August primary runoff election ballot to avoid "ballot fatigue." Senate Democrats and Freedom Caucus members blocked those efforts.
"Not having a state question in August certainly changes the dynamic and the conversation," Hilbert said during a media briefing last week.
"We're talking about strategy and what we want to do," he added.
States reexamine Medicaid programs with federal cuts, changes looming
Lawmakers are seeking to make changes to Medicaid expansion in the three states where the population is enshrined in their constitution. In South Dakota, lawmakers approved a measure for the November ballot that would invalidate the state's constitutional amendment if the federal match dropped below 90%.
In Missouri, a proposed measure would ask voters to remove a clause preventing additional burdens on eligibility for Medicaid expansion enrollees and add work requirements for the population.
Thirteen other expansion states have enacted trigger laws that would result in rollbacks to Medicaid expansion if the federal contribution dips below 90%.
Robin Rudowitz, senior vice president at independent health policy group KFF, said Medicaid spending is a major focus for states as revenue growth slows and they prepare for policies in last year's One Big Beautiful Bill.
Those changes affect how states fund their Medicaid programs, institute work requirements of 80 hours per month for Medicaid expansion adults and increase eligibility redeterminations for the population to every six months instead of annually.
She said if states got rid of expansion, they would only save on the money they contribute. She also said changes included in the massive spending bill will directly impact expansion enrollees.
The Congressional Budget Office, for example, estimates that nearly 5 million people will be uninsured by 2034 because of the new law's work requirements. Many enrollees who would remain eligible would be at risk of losing coverage because of administrative burdens and "red tape" related to reporting requirements, according to a KFF analysis.
Rudowitz said the group will be watching how states respond to this tenuous fiscal climate, especially as it relates to optional Medicaid benefits.
"This is the start of many hard decisions that states are going to need to make in terms of looking at their programs, looking at their budgets going forward," Rudowitz said.
Medicaid is popular among Americans. Polling from KFF suggests two-thirds of people living in non-expansion states want to see their Medicaid programs cover more low-income, uninsured people.
Adam Searing, who researches Medicaid at Georgetown University, said even Republican lawmakers who oppose Medicaid expansion know it's an unpopular stance. So, instead of repealing it, lawmakers are chipping away at it.
"We're not getting rid of it, but we're going to do these changes that will effectively get rid of it or will effectively mean that many fewer people can obtain coverage," Searing said.
'We are dismayed as physicians'
It is unclear what changes state lawmakers would make if voters allowed them to adjust Medicaid expansion. Hilbert said in an April 23 media briefing that more permanent state Medicaid work requirements would be one part of the conversation.
"[In] the Big Beautiful Bill, Congress established work requirements, which I believe is wise," Hilbert said. "If Congress were to come back in 2029 and change the rules and say, 'No, we're not going to have work requirements,' there's nothing we could do about it as the way our constitution is currently constructed."
Medical providers have denounced Republicans' efforts to force changes to Medicaid expansion. Votes to advance the proposed state questions were stalled in early April after Paxton said lawmakers needed more time to meet with healthcare leaders on their provisions.
Dr. Sumit Nanda, the Oklahoma State Medical Association's former president, said expansion has been associated with improvements in several areas, including maternal health and access to opioid addiction treatment.
"So we are dismayed as physicians that the legislature and the governor want to undo what's already been done and what's working," Nanda said.
As an ophthalmologist and retinal specialist in Oklahoma City, Nanda said he's also had a front seat to the economic impacts that gaining coverage can have.
"If you get someone, an otherwise healthy person that's blind, you get that person to see again … that one thing was able to help them work and then subsequently contribute to the tax base," Nanda said. "And that's money well spent."
In her Tulsa home, Kelly Smalley said regaining Medicaid coverage has made her life happier and healthier.
While she was in a coverage gap, she had to inject herself with medication to treat her multiple sclerosis and seek out assistance to pay for it. Now, she can go to the hospital twice a year and be treated by a health professional.
"If Medicaid expansion goes away, people won't be able to get the meds they need or the treatments they need," Smalley said, "They're going to be sicker, and it will be way more expensive to help them."
If lawmakers ask voters to change their minds on Medicaid expansion, Smalley said they can bet the over 200,000 Oklahomans who've gained coverage will show up to the polls.
"I just really hope all the work that me and so many people put in to get it added to the constitution doesn't just go away," she said.
