Katherine Mitchell was in the eighth grade when she started having health problems. Eventually she was diagnosed with a rare connective-tissue disorder, the first in a series of serious medical issues. “I’ve just been plagued by health stuff ever since,” she said.
She moved from Alabama to Kentucky for college and stayed. About four years ago, she developed one of the most debilitating conditions she faces: trigeminal neuralgia, chronic pain that stems from veins in her brain pressing on facial nerves. The first time she experienced it, “an electric shock just shot through my head, and I fell to the floor,” she recalled. It created “unfathomable” pain, “a pain that humans just were never supposed to feel.” Those intense shocks would ricochet through her face whenever she tried to talk, smile, eat, drink, or brush her teeth.
One day she was trying to eat her favorite Indian food, a process that required opening her mouth, waiting for the stabbing pain to subside, and slowly closing it around her food. Then something changed, and the pain didn’t stop. “It was really the worst pain I’d ever had,” she said. “I remember looking up at the ceiling and being like, ‘I am fucked. I’m not going to make it. The end [is] coming.’”
Soon after that, Mitchell lost her office job, which meant she also lost her health insurance. But this was around the time in 2014 that Kentucky’s then-governor, Democrat Steve Beshear, expanded Medicaid, the public health program that primarily serves low-income people, via an executive order under the Affordable Care Act. Mitchell, who was able to sign up under the expansion, said she “couldn’t believe how easy it was…and that someone could so easily help me.” She found a neurosurgeon who performed a craniotomy on her, which relieved the compression on the nerve causing the pain. She said she would have been pushed to suicide if it hadn’t been for the relief. “The procedure did save my life.”
Mitchell also suffers from post-traumatic stress disorder, and Medicaid has allowed her to get counseling. “I don’t know what I would have done if I was not able to have that,” she said. Getting insurance through the state’s Medicaid expansion “has literally saved my life.”
The experience proved transformative for Mitchell in other ways. She was raised in a wealthy conservative family, with Fox News and Rush Limbaugh constantly playing; she even referred to Limbaugh as “Uncle Rush.” If there was any discussion of public programs in her home, it was about people gaming the system and taking advantage of their fellow taxpayers. Though Mitchell developed some “progressive leanings” as an adult, she said that being able to enroll in Medicaid so easily and get the care she needed was an eye opener. It “made me think a lot more intensely about how public programs work,” she said. “Just having a small taste of the barriers that you come up against…it made me think about a lot of people outside of myself and the endless complexities of who has access to what.
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“Public programs saved me,” she said. “It has definitely shaped how I think [and] the intensity with which I feel my political views.”
Mitchell is one of hundreds of thousands of Kentuckians who get their health care through the state’s Medicaid expansion under the ACA. In the 37 states that have decided to take part, Medicaid coverage is open to everyone living at or below 138 percent of the federal poverty line. By March of 2018, nearly 672,000 more people were enrolled in Kentucky’s Medicaid program and Children’s Health Insurance Program than in 2013, most of them thanks to the expansion—a more than 110 percent increase. That’s 15 percent of the state’s population, including close to a fifth of the voting-age population. “If you don’t have Medicaid yourself, you’re interacting with people covered by Medicaid every single day,” said Emily Beauregard, the executive director of Kentucky Voices for Health. By 2017, the state’s uninsured rate dropped from 20 percent to 7.5 percent, the largest decrease in the country.
Those enormous gains make the deep-red state of Kentucky a particularly powerful example of an unexpected outcome: Beyond improving people’s health and finances, the Medicaid expansion is changing how they view politics and their government. It’s prompting them to get out and vote, and it has become a winning issue for Democrats, even in heavily Republican areas. And it could be transforming the way Americans view publicly funded health insurance itself.
Kentucky’s Medicaid expansion means that more than a quarter of the state’s population now gets coverage through the program. But just a year after its implementation, Republican Matt Bevin ran for governor promising to end the Medicaid expansion completely. “The fact that we have one out of four people in this state on Medicaid is unsustainable. It’s unaffordable,” he said on the campaign trail. “And we need to create jobs in this state, not more government programs to cover people.” He won with 49.2 percent of the vote. After taking office, he sought a waiver from the federal government to allow him to impose a work requirement on Medicaid recipients, require monthly premiums, and eliminate retroactive eligibility, among other punitive changes. A judge struck down the waiver, but Bevin signed an executive order that would reverse the entire expansion if he didn’t get his way in court.
Even so, he never carried out his threat. “There has not been one serious bill filed to end the Medicaid expansion,” Beauregard said. “There was the sense that it wasn’t a winning issue to take coverage away from people.”
Now Bevin’s efforts appear doomed. Six years after the expansion, Medicaid played a huge role in this year’s gubernatorial contest between Bevin and Democrat Andy Beshear, the former governor’s son. “Medicaid expansion and health care were front and center in the campaign,” Beauregard noted. For Beshear, “it was a platform issue”: He not only supported the Medicaid expansion but also repeatedly asserted that health care is a human right.
Voters paid attention. In a survey conducted by Beauregard’s organization, many of those who said they cared about the issue were not enrolled in Medicaid themselves; they were just “concerned citizens who understood this was an economic issue, a social justice issue, an issue of neighbors taking care of neighbors,” Beauregard said. “It was really striking to read so many comments from people who were not going to be directly affected and who could just as easily say, ‘I’m the taxpayer footing the bill.’ But instead they recognized there was value in their neighbors and coworkers having access to health care coverage.”
In the lead-up to the election, Tiffany Pyette canvassed door-to-door with Kentuckians for the Commonwealth and found that the issue was key for voters. “The conversations that I had with people were very focused on…taking care of their health and their families, and that was different for me from the usual political conversations that people tend to have,” she said. “It was at the top of people’s concerns.”
She recalled meeting one woman who gained coverage under the expansion. Medicaid covered her surgeries and treatments for three serious health events over the past year, including an aggressive cancer. Pyette, who has a disability, could relate. “She and I talked about how [expansion] would be heavy on our minds when we went to the polls, that we’re voting for our health and the health of our neighbors,” she said.
In the end, voter turnout was higher than expected, particularly for an off-year election. “People were paying attention and wanted to have a say,” Beauregard observed. And they chose Beshear over Bevin, even as the Republicans fared better down ballot. “I think that voters were very clear on what policies they were voting for,” Beauregard continued. In his victory speech, Beshear vowed that one of his first acts as governor would be to rescind the Medicaid work requirement.
Medicaid played a clear role in other November races as well. In Louisiana, Democrat John Bel Edwards won reelection as governor; he also ran on Medicaid expansion, having implemented it in his first term. His lead pollster told The Washington Post that “no single issue was more important than the Medicaid expansion.” And Democrats took back control of Virginia’s state legislature on a promise to defend the state’s Medicaid expansion from Republicans.
Medicaid “wound up being really central to the gubernatorial election [in Kentucky] in a way that is absolutely consistent with the idea that Medicaid expansion has a lot of political salience,” said Eliot Fishman, the senior director of health policy at Families USA. This is a relatively new development: He looked at polling data in the early 2000s and found that health care was never among the issues that voters cared about most; instead taxes, education, and crime were top of mind. But more recently, “health care has emerged as a major issue.” Last year, voters in Idaho, Nebraska, and Utah approved ballot measures to expand Medicaid in their states. Even when voters approve such measures, it doesn’t mean they immediately take effect; lawmakers in Nebraska delayed benefits until late 2020, and Utah’s legislature implemented them only in part. But not a single state that expanded Medicaid coverage has fully rolled back the expansion. “I don’t believe it’ll ever happen,” Fishman said.
Medicaid expansion has had a number of dramatic effects: One study found that it saved at least 19,200 lives from 2014 to 2017. It has increased insurance coverage, given people better access to medical care, improved health, and preserved recipients’ finances. The program is also changing the political landscape. In 2017 political scientist Jake Haselswerdt looked at district-level election data and concluded that Medicaid expansion was associated with increased voter turnout. That year, two other analysts found that Medicaid expansion states had higher rates of political participation and these effects were greatest in counties with the largest share of eligible recipients. This jibes with research examining data from before the expansion. In Oregon, for example, which selected Medicaid recipients via a lottery in 2008, people who got into the program were more likely to vote in that year’s presidential election.
All the data points in one direction: “When you expand Medicaid, it’s associated with a higher likelihood of voting,” Haselswerdt said. Extrapolating from this research, he, Michael Sances, an assistant professor of political science at Temple University, and Sean McElwee of Data for Progress wrote a memo estimating that if the states that have refused to expand Medicaid decided to reverse course, about 1.3 million more people would vote.
Haselswerdt and Jamila Michener, an assistant professor of government at Cornell, also found that when Medicaid recipients lost coverage in 2002 and 2006, turnout decreased. Michener’s research likewise found that in states that have expanded Medicaid but then retrenched the benefits or imposed hurdles like work requirements, there has been a dampening effect on political participation. “When people are getting more from Medicaid,” she said, “it makes them more engaged in politics and empowers them.”
Medicaid expansion may even change the way people view government. In a study published in 2019, political scientists Daniel J. Hopkins and Kalind Parish found that Medicaid expansion made low-income people view the Affordable Care Act more favorably than those who lived in non-expansion states. Yet there was no such change for higher-income residents. “This is people who are either themselves personally benefitting or are likely to know people who are benefitting,” Hopkins observed. Covering more people under Medicaid, then, is an approach that “reshapes the political landscape by generating more support for the underlying policy,” he added. “The ways in which people interact with government programs tells them important facts about how the government values them.”
But Michener had a note of caution: It all depends on how public programs are structured. In interviews with recipients across the country, she found that if people enrolled in Medicaid are required to prove that they deserve coverage over and over again, then they no longer feel valued. “If we’re going to give people more access and eligibility on paper…but we’re going to make people’s lives harder at the same time and [make them] feel the weight and burden of being involved with the government in this way, it could end up neutralizing any positive effect,” she said. That would turn the government into “an entity that is interested in controlling them, punishing them, judging their worth and deservingness.” In such an event, “it’s not surprising they don’t think it’s worth participating.”
At the federal level, too, Medicaid has proved to be a powerful political issue. When Republicans were voting to repeal and replace the Affordable Care Act in 2017, the need to preserve Medicaid was one of the rallying cries of those fighting the legislation, particularly among disability rights advocates, who stormed the Capitol to defend the ACA, holding 24-hour vigils and sleeping in their wheelchairs. Despite their control of the White House and both chambers of Congress, the Republicans couldn’t get a repeal bill through, thanks to three of their own who voted against it, including a last-minute nay vote from a gravely ill John McCain. “Historically I don’t think we ever would have seen that kind of a mass popular groundswell around defending the Medicaid program,” Fishman said. “The big change was the advent of Medicaid expansion and this big new population that relied on the program.”
Republicans like Jeb Bush and Mitt Romney cynically argue that Democrats are rewarded with votes for giving out “free stuff,” but it makes sense that recipients might be inclined to protect a program that is life-changing for them. “Once [new recipients] have access to that benefit, I think it is no longer a ‘nice to have,’” Fishman said. “They realize how important it is and how basic it is to a modern existence as a household. And it moves more to the center of their concerns.”
But researchers are finding that’s not the only reason Medicaid expansion is driving political participation. For some, having health insurance may lift such a heavy burden that they now have more capacity to engage with politics. “If you’re suddenly eligible for Medicaid, that could be a resource equivalent to one fifth of your income. That’s a sizable benefit,” Hopkins explained. That frees up a lot more time and resources to spend on politics. “People are more likely to vote when their lives are more stable,” Haselswerdt said. “If you’re struggling with medical expenses, dealing with medical bankruptcy, politics is not the first thing you’re thinking about.”
Medicaid expansion may also encourage people to view the government and their elected representatives in a whole new way. When Michener talked to Medicaid recipients, many mentioned how people like them—poor, on the margins of society—don’t usually get what they need from the government. Summarizing their statements, she said, “‘When there’s an expansion, suddenly people like me are getting more. This tells me that there are possibilities. It tells me that change is possible. That politicians responding to the needs of people like me is possible.’
“What that signals is people like you do have power, you do have a voice.”
Joe Merlino was diagnosed in 2011 with sarcoma of the larynx, a rare type of cancer that created a tumor in his voice box. At the time, he had health insurance through his employer in Nevada, allowing him to get surgery to remove the tumor as well as a partial laryngectomy. But he wound up with tracheal stenosis, or a narrowing of his windpipe, which required more surgeries. In early 2014, right after he had his trachea removed, he found out that his employer was going to stop providing health insurance. The cost of COBRA to continue his coverage was nearly equivalent to the disability checks he was receiving.
“With a hole in my neck, I had to run out and find some way to get covered,” he recalled, his voice whispery. He discovered that he qualified for Nevada’s Medicaid program, expanded by Republican Governor Brian Sandoval in 2014. “I didn’t really know a lot about Medicaid at the time, so my first question was, ‘How much does it cost?’ because I wasn’t making very much,” Merlino said. He was told it wouldn’t cost him anything. “I was like, ‘Are you kidding me?’… It was a huge, huge relief.”
He was also told that if he had applied just a few months earlier, he would have been turned down; the Medicaid expansion hadn’t been in place yet. “I’d been through hell,” he said. Getting Medicaid coverage was “finally something that was positive in my life.” He was able to get surgery to widen his airway and close the hole left from having his trachea removed. “It was all paid for by Medicaid,” he said. “Without Medicaid, I would have died.”
Merlino, a professed “news geek,” had followed the passage of the Affordable Care Act in Congress and was generally supportive of it. But his ability to enroll in Medicaid and get lifesaving treatment without cost transformed him. “It propelled me into this health care advocacy that I’ve taken on in the last few years,” he explained. He has since appeared in a video for a think tank that has been viewed millions of times, talked to the press, and recounted his experience for a number of politicians. He appeared in a commercial for Jacky Rosen, who unseated Nevada’s Senator Dean Heller, a Republican, in 2018. (Heller supported ACA repeal.) “I was blessed to have Medicaid and the Affordable Care Act there for me,” Merlino said, “and this is my way of fighting so other people can have that opportunity.”
“My personal experience obviously changed the path of my life,” he continued. “It made me see so much more the potential good that certain government programs can have, including Medicaid. I felt that somebody cared. These programs bring back dignity to people.”
Merlino was among the more than 200,000 people affected by Medicaid’s expansion in Nevada—nearly one-fifth of its residents are now covered by Medicaid and CHIP—and last year’s elections were likely influenced by that expansion. Democrats not only took control of the governor’s mansion but also deepened their control of the legislature. “Medicaid [was] very central to that fight,” Fishman said.
“There’s this old idea that a poor people’s program is a poor program,” Haselswerdt said. A public benefit offered only to low-income people is usually thought to be politically vulnerable, cut off from the more powerful support of the well-to-do. “I think Medicaid has defied that in some ways,” he added. “It’s more popular than people think.”
It’s a surprising outcome and one that doesn’t necessarily hold for other components of the ACA. Hopkins hasn’t been able to find the same effect for, say, the private insurance exchanges the act created. Americans may be turned off by the high prices on the exchanges: Premiums grew 22 percent on average from 2016 to 2017, and copays and deductibles have also risen. Hopkins found that as prices on the exchanges rise, people feel less favorable about the Affordable Care Act. (Medicaid typically covers care cost-free.) Those who didn’t get subsidies to buy insurance on the exchanges are particularly likely to feel excluded from the law’s benefits. The exchanges match consumers with private insurance companies, creating a relationship between a company and a customer. “The fact that the government is playing a role to backstop my private insurance is not especially visible,” Hopkins said. Medicaid, on the other hand, creates a direct relationship between government and citizen.
“If you had told me in 2010 that the Medicaid expansion was actually going to be one of the most popular parts of the Affordable Care Act and one that, for a Republican Congress, was harder to repeal, I would have been quite surprised,” Hopkins continued.
It may be because of the program’s vast reach. Over the last two decades, enrollment in Medicaid has more than doubled. “The politics have changed because of the scope of the program,” Fishman said. In expansion states, anyone earning up to 138 percent of the federal poverty line—or about $35,500 for a family of four—can enroll. Medicaid covers not just poor people but also people with disabilities, children with severe health conditions, and the elderly who need nursing home care. The ripple effects are even larger. Seventy percent of Americans now either have personal experience with Medicaid or know someone who does. “When there’s somebody you can think of who’s on this program, it does give it a different kind of power,” Michener said. That makes for a broad constituency ready to fight for it. “Expansion can bring people together across class,” she added, which can build momentum toward universal coverage.
Medicaid’s growth may be giving the country a taste of single-payer health care for all—one that people are finding they enjoy. Joan Alker, the executive director of the Center for Children and Families at Georgetown University, has worked in health policy for more than two decades. She said she has seen a huge change in how Americans view health care ever since the passage of the Affordable Care Act. “When confronted with the question of whether or not people should have access to health care or not, they increasingly think the answer is yes,” she noted. “The paradigm has shifted in this country.” Indeed, 60 percent of Americans now say it’s the government’s responsibility to make sure Americans have health coverage—the highest share in a decade.
Seven contenders for the Democratic presidential nomination, including front-runners Bernie Sanders and Elizabeth Warren, are running on Medicare for All. That idea springs in part from Medicare’s considerable popularity. But Medicaid is increasingly seen as positive, too. It’s “an additional significant factor in people being more and more open to the increasing role of government in the provision of health care,” Fishman said.
The impact of Medicaid expansion on the country’s politics and the way Americans view their government is likely to increase in the years ahead. “It wouldn’t at all surprise me if, with some more time down the road, we’re seeing much bigger effects,” Haselswerdt said. “Being able to have treatment for your chronic condition may not make that huge a difference in years one through five. But 20 years from now, you’ll be in much better shape than you would have been.” As more states consider expanding Medicaid and more people get health care through it, the political landscape will continue to be transformed.
Editor’s Note: This article initially misattributed the authorship of The Missing Medicaid Millions. The authors are Jake Haselswerdt, Michael Sances, and Sean McElwee, not Jake Haselswerdt and Jamila Michener. The text has been corrected.