Pat Hustmyer’s home is bright and filled with things she and her family made with their hands, like crocheted blankets and small stained glass art. But while she's sitting on her couch, Hustmyer’s hands are focused on a page in a notebook with meticulously organized data about Medicaid spending.
"I have to, every day, try to go, 'Is there anything I can do to try to change somebody's mind — to make them understand that I'm a person, that this could kill me?'" Hustmyer said.
Medicaid covers Hustmyer’s medication for her chronic health condition. She is one of the hundreds of thousands of Hoosiers that rely on health coverage through Indiana’s Medicaid expansion program. Almost 700,000 people enrolled in the Healthy Indiana Plan, or HIP, are caught between Indiana and federal Medicaid policies that threaten their coverage and could force them to make “life-or-death” decisions.
Indiana legislation
Hustmyer and hundreds of other Medicaid members have tried to stop state lawmakers from overhauling the Healthy Indiana Plan, or HIP. Their rallying calls of “Hands off Medicaid” and “Hands off my HIP” were echoed through other states facing similar threats.
Hustmyer said the only way to deal with her anxiety around all of it was to get involved with trying to change the outcome. She attended town halls, went to the Statehouse and talked to lawmakers for months.
“You just keep saying it,” Hustmyer said. “You just keep going. Because that's really all that we can do.”
Despite the efforts of Medicaid members and advocates in Indiana, Indiana’s Medicaid overhaul, Senate Enrolled Act 2 was signed into law on May 1. It includes policies that establish work reporting requirements for the HIP program and increase eligibility checks for Medicaid members. Both will likely result in people losing coverage. And Hustmyer said, lawmakers don’t care.
“It's all just numbers,” Hustmyer said. “It's dollars. It's not people.”
Hustmyer said she’s not physically able to work due to pain in her legs and back. But even if she was, she wouldn’t be able to afford to work. She moved to Indiana to live near her mother. After looking continuously, she hasn’t been able to find a job that pays enough.
Despite having 33 years of experience in retail, she said she was offered positions working 20 to 30 hours a week for a maximum of $11 an hour and inadequate insurance. She said she even took a part-time job where they offered insurance, but she couldn’t afford it.
"They offered me insurance at $188 a week, which was more than two of my paychecks combined,” Hustmyer said. “How do you make a payment for insurance of $188 a week when you don't make that much money? Where are you supposed to get the money to be able to pay for that?"
Hustmyer said she spoke to her representative, Rep. Brad Barrett (R-Richmond) — the House sponsor of SEA 2 — at a town hall after he said Americans should be responsible for their own health care. She said she explained that Indiana’s minimum wage is $7.25 and there’s not enough of an expectation that businesses provide adequate coverage to their employees.
“It's like, if businesses don't have some standard to care about their workers, how am I supposed to be able to pay for it out of my pocket?” Hustmyer said.
She said Barrett seemed to take it as a genuine point of discussion.
However, Hustmyer said she and other Medicaid members asked several lawmakers why they were pushing for these changes if their constituents weren’t interested in them. She said they responded that they were thinking about the bigger picture.
Hustmyser said despite SEA 2 being signed into law, she’s not done talking to lawmakers and fighting to protect Medicaid programs in the state.
“Even if I can’t convince these lawmakers, I might be able to have a voice, to be able to convince enough people who vote for the lawmakers that the decisions that were made by the ones who are in power right now, were not the correct choices,” Hustmyer said. “And to flip and to change the power and bring the power back to people and to stop giving the power to the government who obviously doesn't really represent us.”
Added instability from the national level
Hustmyer said she’s already worried about what the state legislation when it takes effect, but changes proposed at the federal level are adding even more uncertainty.
Those changes are tied to hundreds of billions of dollars in proposed spending cuts to Medicaid. Republican lawmakers say they need to reduce federal spending to pay for the Trump administration’s tax cuts.
If federal lawmakers pass their current proposal, Indiana and other states would be required to implement the policy with the exceptions federal lawmakers lay out. A recent change to the federal bill changed the implementation timeline from 2029 to no later than the end of 2026.
Leo Cuello, a research professor at Georgetown University's Center for Children and Families, said federal lawmakers proposed their own work reporting requirements which create harm at both the community and individual level.
“You take health insurance away from workers, and so you have a less healthy workforce,” Cuello said. “You have less federal dollars flowing into the state, which hurts the state economy.”
On an individual level, Cuello said the proposal puts people's health and lives at risk.
In Arkansas, which only had work reporting requirements for a short period in 2018 before a court ruling stopped them, Cuello said the requirements led to a man who was meeting the requirements losing his coverage due to administrative issues.
Adrian McGonigal was 40 and was working at a chicken plant. He also had chronic obstructive pulmonary disease or COPD, which can lead to inflammation or blockages to the airways or lungs. He was taking “life-sustaining” medication that was covered by Arkansas's Medicaid expansion.
“He goes to the pharmacy one day and he can't get his medication filled,” Cuello said. “He's like scrambling around town, going to different pharmacies to try to see if somebody will fill his medication, until he finds out the medication is not getting filled because ‘you're uninsured.’”
Cuello said McGonigal found out through the pharmacy that his health insurance was terminated. He said McGonigal had to go to the emergency room to receive more expensive care. Without his medication, Cuello said McGonigal started missing shifts because he couldn't breathe.
McGonigal lost his job. Cuello said his doctors told him that without his medication he was going to cause permanent damage to his health.
“This is a guy who was doing everything right,” Cuello said. “He was working, and then they drop this work requirement on him, and he gets sent down on this whole, I call it, ‘downward spiral’ in his life.”
McGonigal died last year at 46 years old.
“I don't know if the cause of death was related to the fact that this work requirement hit him, but I definitely know what this work requirement did to his life,” Cuello said. “It ruined his life. It took away his health insurance. Then, it took away his health. Then, it took away his job. And it maybe even took away his life.”
Join the conversation and sign up for the Indiana Two-Way. Text "Indiana" to 765-275-1120. Your comments and questions in response to our weekly text help us find the answers you need on Medicaid and other statewide issues.
Cuello said without coverage many people, like McGonigal, may have to depend on emergency rooms for care. Which means the amount of medical debt for families will go up — and with it the number of bankruptcies.
The federal legislation passed the House with a final vote of 215-214 — less than two weeks after the initial draft of the legislation was submitted. It still needs to be approved by the Senate.
Cuello said the federal proposal includes a number of other Medicaid changes, as well as changes to broader health care policy that threaten people’s coverage.
He also said while states will take on the brunt of the administrative costs of the policy, the federal proposal does include $150 million to help states set up the work reporting requirement system. Cuello said it’s bad public policy.
“The federal government is going to invest $150 million — which is not enough money but is still a lot of money — in helping states build hurdles so that people can’t get health insurance, so that the federal government can save money,” Cuello said. “You're laying out money to create a bureaucracy to trip people up so that you can save more money, right? And that is the naked meanness of this.”
Cuello said in order to generate the savings federal lawmakers are looking for, people have to lose coverage.
The Congressional Budget Office hasn’t scored the full bill according to Cuello, but even their initial partial score estimated about 10.3 million Medicaid or Children’s Health Insurance Program (CHIP) members would lose coverage by 2034. Indiana’s Medicaid enrollment loss could be between 174,000 and 290,000 according to KFF analysis based on the initial CBO score.
Experts and Medicaid providers say that level of coverage loss could lead to additional problems elsewhere.
Additional risks to states, providers and rural communities
Dr. William Cooke is the medical director for Foundations Family Medicine — the only primary care provider in Austin, Indiana. About 60 percent of its patients are Medicaid members.
Cooke said when people lose coverage they stop seeking preventative care, which means that hospitals and the state may end up footing the bill for a more expensive emergency room visit or a larger public health emergency.
“We're really pushing this budget downstream, and we're going to pay for it in the end,” Cooke said. “I think it's a little short-sighted.”
In Austin, Cooke’s medical practice has been the only care option in town since 2004. Before that, the last practicing physician retired in the mid-1970s. Cooke has put in a lot of additional time and resources to ensure that his practice remains open in town.
However, Cooke said many rural providers and hospitals may not be able to handle the additional strain of the policy changes. And he’s not the only one concerned by the possibility of Medicaid affecting their access to care.
Teresa Woodard has been a patient of Cooke’s for years. She and her family also rely on Medicaid.
“There are still families, a lot of them here in Austin, that really need it, and changes to that are going to throw everything out of whack,” Woodard said. “A lot of people come here to see Will Cooke and his group. Will's been my doctor since his office was on the edge of town, and I have no interest in changing doctors.”
If the changes affect the practice, Woodard and many others in the community would have to choose between traveling further for care or not seeking it at all.
“In small, rural places like this, it would be traumatic,” Woodard said. “It would affect so many people that depend on it for their medical care.”
And Austin isn’t the only rural community in Indiana facing a situation like this.
“It's something that's going to devastate small areas like this and others,” Woodard said.
Cooke said Indiana and federal Medicaid policy changes also ignore that people, especially in rural areas, may not have access to the resources needed to fulfill the work reporting requirement.
“They can only make choices from options available to them,” Cooke said. “Things like transportation, things like a livable wage, access to lifelong learning — these things matter.”
Even with the exceptions, Cooke said people in rural areas may not have a lot of opportunities to meet the requirements that the state and federal government are asking them to meet.
For example, Cooke said there’s an exception that allows for someone to utilize volunteering to meet the work reporting requirements.
“That's great, but if your community doesn't have very many jobs you probably don't have a lot of places where you can volunteer either,” Cooke said.
Cooke said if the goal is to encourage people to work, requiring it for Medicaid coverage doesn’t address the underlying causes of why people can’t or don’t work.
He also said decades of research show the better health a community has, the better it will do economically.
“When they're passing budgets, I think every single budget item needs to be addressing health in some way,” Cooke said. “Because if people aren't healthy in a community, how are they going to work? They're going to cost the community more money because we're treating more conditions.”
Cooke said the opposite is true for a community that has access to prevention, early detection and early treatment.
“Over the long run, we're going to spend much less money, and we're going to have a healthier population that's more able to work,” Cooke said. “We're going to have economic growth and prosperity in a way that we've never had before.
Providers like Cooke and Medicaid members say they are trying to remind lawmakers of the life-or-death consequences of their fiscal and budget decisions.
Hustmyer said without Medicaid, she may face those consequences every month.
“I'm literally going to have a choice of whether or not I take a gamble on getting blood clots or keeping a roof over my head, because I can't do both," she said.
Beyond the budget, experts and providers highlight the potential loss of coverage, health and life. And at the center of it all are the people at risk of losing all three, doing whatever they can to protect the program they say keeps them alive.
Abigail is our health reporter. Contact them at aruhman@wboi.org.