This article was reported in partnership with the Investigative Fund at the Nation Institute.
RaDonna Kuekelhan and her sister, Cathy O’Mara, have spent their whole lives in and around southeast Kansas, a largely rural area wedged up against Oklahoma and Missouri. Long pastoral stretches separate the region’s smattering of ghostly quiet small towns, the depopulated remains of a thriving industrial past. Cathy left the area briefly as a young woman, following a man to Florida, a decision she still regrets.
“I said, ‘God, if you let me get back to Kansas, I will never leave again,’” she recalls, laughing at herself but not really joking. She had missed the closeness of community in Kansas, the way it eases life’s challenges. When she arrived back home without a job, she walked into the factory where her mom worked and started on the line that same day. She’s still there 34 years later.
Closeness has defined Cathy and RaDonna’s relationship, too. The sisters have rarely been separated by more than a long drive. And that is fortunate, because over the past five years, Cathy has been RaDonna’s lifeline as her body has slowly and steadily failed.
RaDonna is dying. She’s a stout, white-haired 59-year-old who’s proudly willful, and she has cheated death twice before. Her first health crisis arrived back in the late 1990s. “It was end of August,” she says. “I went to a softball game and hollered for two hours and I lost my voice. Well, I just assumed it was from the hollering, but it didn’t get no better. So finally my sister told me, ‘You’re going to the doctor.’”
It turned out RaDonna had cancer of the larynx. She says she endured 35 rounds of radiation to beat it back. The treatment was challenging, but at least it was covered. Back then, she had a job making motors for small appliances at Emerson Electric, and it came with a health plan.
Within a couple of years of her recovery, however, Emerson shut down. After two decades in a secure job, RaDonna could now find only temp work, and most of that in factories over the border in Oklahoma. Like most temp work, hers didn’t come with insurance. That made things more complicated when her most recent health crisis began.
In early 2010, she developed severe acid reflux and struggled with fatigue. She was constantly short of breath. “I couldn’t keep nothing on my stomach,” she says now in her gasping whisper, the strongest voice she’s able to muster. “I thought I was having pneumonia.” Cathy scrambled to find a doctor who would see her uninsured sister.
Southeast Kansas is home to four of the state’s five least healthy counties, according to an annual ranking by the Robert Wood Johnson Foundation. People die younger here than anywhere else in the state. They’re more likely to have diabetes, to be obese, to smoke, and they’re less likely to have insurance coverage for dealing with these ailments. In 2010, as RaDonna grew ill, 16 percent of Americans had no coverage; in Montgomery County, RaDonna’s home, the uninsured rate was nearly 22 percent. Few of these people qualified for Medicaid, the national program designed to insure poor people, because Kansas has long had one of the more restrictive programs in the country. At the time, working parents couldn’t earn more than 32 percent of the federal poverty level—or $5,859 a year for a family of three. Childless adults like RaDonna didn’t qualify no matter how little they took home.
But in March 2010, change was in the air. President Barack Obama had just signed the Affordable Care Act (ACA), which promised a massive nationwide expansion of Medicaid. States were asked to open their programs to all adults earning up to 138 percent of the federal poverty level, or just about $27,000 a year for a family of three. In return, Washington would pay the full costs of new enrollees through 2016 and 90 percent from 2020 forward. It would be hard to overstate the magnitude of this change. It was arguably the largest expansion of an anti-poverty program since Lyndon Johnson’s Great Society, when Medicaid was created—and it could very well have saved RaDonna’s life.
But the pitched battle to bring Medicaid expansion to Kansas reveals much about how we arrived at today’s healthcare reality—one in which there is very much a red and a blue America. The difference between those two worlds is stark, perhaps nowhere more so than in Kansas.
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By the time the Affordable Care Act became law, Sandy Praeger had already spent 25 years in Kansas public life, much of it in the Republican Party’s leadership. She’d been the mayor of Lawrence, served in both legislative chambers, and was about to complete a second term as the state’s insurance commissioner, one of just six posts elected statewide. It felt like time to step aside, and she was actively considering retirement. Obamacare changed her mind.
The health of Kansas’ residents had been Praeger’s life work, and she considered the healthcare-reform law a historic development. So she pursued and won another term in 2010 and got to work creating a state-run insurance exchange. “We had a great effort going,” she recalls wistfully, five years and a political lifetime later. “A lot has changed.”
By February 2011, Praeger had positioned Kansas to become a case study for the Affordable Care Act’s successful rollout. The Obama administration chose Kansas as one of seven “Early Innovator” states, each tasked with creating models for others to copy in the complex job of revamping their information-technology systems to meet the demands of a new insurance marketplace and Medicaid expansion. Kansas won a $31.5 million grant to demonstrate how states could blend their Medicaid authorization systems into the exchanges.
The Kansas rollout held huge political significance. Sam Brownback, once one of the Senate’s most prominent social conservatives and a champion of pro-life causes, had just taken office as governor. Kathleen Sebelius, a Democrat, had been Kansas’ governor until 2009, when she left to become President Obama’s health secretary and lead his healthcare-reform charge. If her famously moderate home state, now helmed by a Tea Party favorite, were to become a central player in Obamacare, it could help mainstream a policy that conservatives had tarred as radical.
But the political challenges would be formidable. Praeger and Brownback are not from the same Grand Old Party. Praeger calls herself a “Nancy Kassebaum Republican,” after the senator who, together with Bob Dole, helped establish the state’s moderate-Republican brand during the Reagan years. Brownback, on the other hand, won on a staunchly conservative platform that, among other tax-cutting, zero-government stances, fully rejected the Affordable Care Act. So Washington wanted assurances from the new governor before it cut a check.
“I talked with him, and I talked with some of the more conservative members of the legislature,” Praeger recalls. She describes the sentiment across Kansas’ conservative political spectrum at the time as more petulant than obstructionist: Fine, we’ll do health reform, but we’ll do it our way. “It was the whole mantra of ‘Well, we want to be in charge.’” With that understanding, Brownback sent a letter to the feds endorsing Praeger’s planning as an “exercise of prudence,” and Kansas got the money. “Our office will work with the insurance commissioner…to implement the Kansas exchange in a way that ensures Kansas, not Washington, maintains control over its own healthcare choices,” a Brownback spokesperson said at the time.
From the vantage point of 2015, both Praeger’s optimism and Brownback’s reluctant acceptance appear fantastic. But this was before the Supreme Court had agreed to hear any challenges to the ACA. And while the individual-coverage mandate was still provoking intense pushback, Medicaid expansion had the air of inevitability: Rejecting expansion meant opting out of federal funding for the entire program. Brownback didn’t have a lot of alternatives.
“From where I was sitting,” says Scott Brunner, who ran the state’s Medicaid program at the time Brownback took office and is now a senior analyst at the nonpartisan Kansas Health Institute, “it seemed like the governor had to decide how much of the Affordable Care Act he could tolerate.”
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Meanwhile, in the late spring of 2011, as RaDonna’s undiagnosed breathing problems intensified, she found herself facing yet another health crisis: colon cancer. She was still working a temp job with no insurance, but she escaped the surgery with almost no debt because the Oklahoma State University hospital at which she was treated absorbed most of the cost. Members of her church pooled money to help pay for the rest.
RaDonna had been struggling to maintain her independence as her health worsened. But after the colon surgery, her doctor warned her it was time to stop working. Cathy agreed. She insisted RaDonna come back to Montgomery County and live with her, and then she set about finding someone who could figure out why her sister was having breathing problems. Medicaid expansion was still on the horizon—slated to take effect in January 2014—so Cathy turned to the Community Health Center of Southeast Kansas (CHC), a nonprofit network that offers primary care to the uninsured.
Cathy O’Mara opened her home to her sister in 2011.
The sisters drove 30 miles from Cathy’s house down to the nearest CHC clinic, in Montgomery County’s largest town, Coffeyville. There, they met Julie Griffin, the doctor in charge. Griffin is also an evangelical minister, and as with many of the people I met in socially conservative southeast Kansas, Brownback’s politics force a tension in her core values. She’s resolutely pro-life and supports Brownback for his famously firm stance against abortion. But for her, valuing life means valuing universal access to healthcare, too. And she blames southeast Kansas’ ailing health on a toxic mix of poverty and political neglect.
“If you can’t find a job, you can’t feed your kids, you don’t feel like there’s any help for your kid in terms of success, that’s going to affect your mental health,” she says in a typically energetic riff about the challenges her patients face. “And if you don’t take care of your mental health, then your diabetes is going to be a thousand times worse.” She says much of her work is a matter of convincing patients to fight for their own lives, despite the dearth of care. She can call the roll of uninsured patients she’s coaxed away from preventable death, only to have them tumble back to grave illness when they grow defeated because she’s run out of subsidized meds or can’t connect them with a free specialist: “People that didn’t want to take care of their diabetes because there’s no hope anyways.”
Griffin immediately saw this grim potential in RaDonna and began scrambling. She sent the sisters on a 65-mile trek over the border to Joplin, Missouri, where she found specialists at a private hospital who would see RaDonna without insurance. “We went there for a year, back and forth,” RaDonna says. “We went to a throat doctor, went to a lung specialist, a stomach guy,” Cathy chimes in. Finally, they discovered the problem: All that radiation to clear RaDonna’s larynx cancer had destroyed her esophagus.
“The top of her throat is paralyzed,” Cathy explains. “Everything that she puts into her mouth and swallows, some of it aspirates down into her lungs. They told me that she is ‘terminal’—that was their words to me. ‘Your sister is terminal. We don’t know how long she will live. She will either slowly starve to death or she will aspirate and choke to death.’”
RaDonna was too young to collect Social Security, and she was trying to survive on a $231-a-month pension from Emerson. Despite her diagnosis and collapsing income, as a single adult she still didn’t qualify for Medicaid. The only way into Kansas’ program was to qualify for disability—and in 2013 the state rejected her application. “They denied it,” says Cathy, still angry. “They said she was not ill enough.”
RaDonna’s body was a financial time bomb. Inevitably, she would land in the emergency room, which would bankrupt Cathy and her husband.
As all of this unfolded, the sisters weren’t paying much attention to the debate over healthcare reform in Kansas. Medicaid expansion would give RaDonna a fighting chance, but its prospects were fading fast. Up in the state capital, Praeger was losing battle after battle in her effort to implement the Affordable Care Act.
* * *
Over the course of Brownback’s first months in office, any cautious support that he’d shown for Obamacare quickly evaporated, as movement conservatives made it clear that they wanted a united front in opposition to the law.
Oklahoma, like Kansas, was one of seven states that won federal “Early Innovator” grants. In April 2011, facing conservative outrage, Oklahoma Governor Mary Fallin sent that money back to Washington. Pressure mounted for Brownback to do the same. By early August, the state GOP was poised to vote on five separate resolutions demanding that Brownback and the legislature do the legal minimum to implement Obamacare and reject the innovator grant. Four days before the vote, Brownback beat the party to the punch and returned the $31.5 million. “Every state should be preparing for fewer federal resources, not more,” he declared in a statement, previewing an argument he’d use against Medicaid expansion as well. “That requires freeing Kansas from the strings attached to the Early Innovator Grant.”
That same week, the 11th Circuit Court of Appeals ruled in favor of the 26 states, including Kansas, that had argued that the ACA’s individual mandate was unconstitutional. By November, a Supreme Court showdown was set, freezing further action on healthcare reform in Kansas. Praeger argues that her conservative colleagues in Kansas wanted to game the Court. “If it looked like the states were cooperating, there was less of a chance the Supreme Court would act,” she says. “It was about creating the public political environment to influence the Court.” Praeger’s office carried on where it could, doing public education about the ACA, but she increasingly found herself in exile.
In June 2012, the Court upheld the ACA’s mandate that Americans buy insurance. But the justices shocked even close Court observers by ruling that states could not be compelled to accept Medicaid expansion. Brownback and other GOP governors were now free to opt out without sacrificing funding for their current programs.
By this point, the governor had launched a stunning political offensive designed to rid the state of any remaining Republican moderates. Brownback had run on a radical platform, vowing to eliminate the state income tax, rewrite funding for public schools, create judicial elections, dismantle welfare—on and on toward a libertarian zero-government utopia. Yet once in office, he faced frequent obstruction from the Nancy Kassebaum Republicans, who still controlled the state legislature. In 2012, Brownback purged them.
“We did not see the onslaught coming,” says former Senate president Steve Morris, a moderate Republican who lost his 2012 primary to a Brownback-supported challenger. “We had 21 races in play and we lost 16.”
As leader of the caucus, Morris became a particular target of movement conservatives. “Unhappy that Obama and five Supreme Court justices are forcing you to accept ObamaCare?” asked a postcard sent by Americans for Prosperity to tens of thousands of voters in contested districts. “Thank Steve Morris.”
Money gushed into the state. Koch Industries put at least $125,000 into the campaign via the Chamber of Commerce PAC, which spent $675,000 on the primary overall, most of it targeting the Senate. Moderate Republicans found themselves in the awkward position of raising money from unions, in what became the most expensive campaign season in Kansas history. It wasn’t enough. “Sam Brownback has shaped government,” says Jean Schodorf, a moderate Republican and 12-year incumbent who lost her seat in the primary. “He’s shaped it from top to bottom. It has taken Kansas down the drain.”
Brownback has said he remains “open to Medicaid expansion,” which may someday leave him room to maneuver. But the antigovernment legislature he now controls passed a law in the spring of 2014 seizing authority over the expansion decision. And for now, Brownback continues to be an effective foe, tapping themes that resonate deeply in Kansas: a visceral distrust of President Obama and a moral rejection of “dependency.”
A June 2014 interview with the Daily Signal, a Heritage Foundation news site, illustrates both of these lines of argument. In it, Brownback explains his opposition by asserting “the likelihood, at the end of the day, that there’ll be a bigger price tag on this thing to the people of Kansas than what they’re currently advertising.” (Of course, by this logic, Kansas would have to reject the hundreds of millions of dollars it receives in federal cost-sharing for dozens of other initiatives, including its existing Medicaid program.) The governor also suggests that Medicaid expansion might foster dependency: “We’re trying to push people that are able-bodied right now to get a job. So when they come to Kansas to apply for public assistance, we say, fine, if you’re able-bodied we’re requiring that you apply for work.”
Brownback now brags that he’s cut the number of people receiving public assistance in Kansas by more than half. But reducing benefits and reducing need isn’t at all the same thing. The poverty rate has remained flat. The share of children who qualify for subsidized school lunches has grown to more than 50 percent for the first time in the state’s history. And according to an analysis by the Kansas Center for Economic Growth, more than half of working-age adults who are uninsured already have jobs.
Still, in the wake of his 2014 reelection, Brownback has returned to his theme of the immorality of dependency. He drew a fresh round of national outrage this April, when he signed a bill that slashed welfare further still—dramatically reducing lifetime eligibility, creating a laundry list of barred expenses (including swimming-pool visits), and establishing a lifetime ban for anyone caught violating the rules. “Too often, while well-intentioned, our poverty programs fail the poor,” Brownback said as he signed the bill. “They fail them by keeping them in cycles of dependency. This legislation helps break that destructive cycle.”
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Dr. Julie Griffin at work in the Community Health Center of Southeast Kansas.
Julie Griffin’s health center has prospered under the Affordable Care Act, as have thousands of community health centers across the country. As federally chartered charities, they play a unique role in the healthcare safety net, tasked with providing primary care to any patient who turns up, regardless of the ability to pay. The balance of conservative and progressive ideals—everyone is asked to contribute, but no one is turned away—has won these clinics rare bipartisan support, including from such prominent Obamacare opponents as Representative Paul Ryan. One of the few uncontroversial parts of the ACA was the $11 billion in new money it plowed into the health centers, which are expected to double their reach nationally.
CHC’s main facility, in southeast Kansas’ regional hub of Pittsburg, got a $4.7 million expansion. It also opened the first school-based clinic in the region and doubled the size of its facility in the Kansas City suburbs. The expansion offered relief for doctors like Griffin, who spends as much time hustling up ways to get her uninsured patients adequate care as she does diagnosing illness.
Griffin serves as a medical missionary in Kenya, and she’s been struck by uncomfortably familiar emotions while on those trips. “You say, ‘Man, if you were just in the United States, I could get you this,’” she says. “Then you come back here and you say, ‘Man, if you just had money, I could get you this.’”
The recession hit hard here. By 2010, the statewide poverty rate—13.6 percent—was higher than it had ever been in Kansas’ history. Today, nearly one in five people lives in poverty in RaDonna’s Montgomery County, and childhood poverty is above 30 percent in many of the neighboring counties. “It just kicked the legs out from under us, and we’ve not recovered,” says Griffin’s boss, Krista Postai, executive director of the CHC network. “I’ve lived through the optimism of the region, and then the depression of the region. And this region is depressed.”
Postai says that the concurrence of the recession and Brownback’s rise to power has been disastrous. “Reducing social benefits couldn’t have come at a worse time.” Without Medicaid expansion, she says, caring for deteriorating patients who are living in poverty is “like swimming upstream.”
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Coffeyville, Kansas, where nearly one in five people lives in poverty.
Charmaine, who didn’t want her last name used, entered the recession feeling good about herself. At 51, she was living in Kansas City and working as a district manager for the discount furniture chain Big Lots, having clambered her way up through the company’s ranks over 15 years. “I started on the floor,” she says. “I didn’t go to college or anything like that, so my hard work got me to where I was. And then…” She swats at the air in frustration.
The recession presented both peril and opportunity for discount retailers like Big Lots, as consumer spending dropped but bargain hunting surged. In 2008, the firm took steps to capitalize on the moment. Company leaders, based in Ohio, streamlined operations by consolidating middle management. Charmaine’s job was gone. “You go from 60-some thousand dollars a year—with great health insurance, company car, everything—to nothing,” she says. She found herself in a job market where all the rules had changed. “Here I am in my 50s. Guess what? They want somebody with education, younger.”
So she downsized, moving from Kansas City to Coffeyville to live with her grown daughter. She got a job as a home health aide for $9.70 an hour, with no health plan. Then she got sick.
It started as a mild case of ulcerative colitis, a disease marked by inflammation and sores in the large intestine and colon. At first, she didn’t feel that bad, and she had more pressing claims on her limited funds than the anti-inflammatory drugs she’d been prescribed. “You know how much the prescription was? $1,000 a month,” she says. “So I didn’t do the medicine, which was my fault, I now realize. But I couldn’t pay for it.”
That was 2011 and, as will happen, over the ensuing years, her condition grew from uncomfortable to debilitating. By July 2014, it had become a crisis. “One day I got up in the morning and just—” She flinches at the memory. “Blood, solid blood just coming out of me like a waterfall.”
She ended up, at Griffin’s advice, in a Bartlesville, Oklahoma, emergency room, one of the nearest hospitals with a gastroenterologist. Charmaine spent two weeks there, the first of five hospital stays over six months last year. The second stay came just two days after the first. She was running an errand at Walgreen’s when she lost control of her bowels. “It was one of the most horrifying things I’ve ever been through,” she says.
This time she went straight to the local ER. They found a gastroenterologist at Kansas University Medical Center who they believed could help, but she would have to get to Kansas City, 165 miles north—an expensive ambulance ride for someone without insurance. “Here I am sitting here, bleeding like crazy, and I’ve got to find a way to get to Kansas City right then. Finally, they had me sign a document saying I had to pay the $4,000 if I wanted to get to the hospital. So I agreed! I signed it.”
The Kansas City doctors discovered that she had picked up a bacterial infection that had complicated the colitis. Now her inflamed colon won’t heal, and the upshot is thousands of dollars in medication and ongoing doctors’ appointments. She’s lost track of the debt she’s racked up. She gets many of her meds free through drug-assistance programs, but the supply can be unpredictable. For her other meds, she’s on a payment plan. When we spoke in January, Charmaine had just run out of her free anti-inflammatories. If she can’t find a new source and her colon worsens, doctors will have to remove it.
Throughout this ordeal, Charmaine has continued working. In the 29 states (plus Washington, DC) that have expanded Medicaid, her income would likely put her in a gray zone; depending on how many hours she puts in each month, she could fall just over or under the 138-percent-of-poverty cutoff to qualify. But in Kansas, she’s completely out of luck. She qualifies for tax credits to buy insurance, but she’s struggled to find a plan in which she can afford both the premium and the cost sharing on all of her meds. She could apply for disability, but she can’t imagine living on the small income that would provide, even if it did bring health insurance.
“I’m not ready to give up. I’m a hard worker,” she says, before breaking down in tears. She’s been taking anti-depressants for the first time in her life. “I’ve worked 30-some years and paid my dues, and here I can’t get any help? And all these years that people get food stamps and medical cards for their children, I helped pay for that. So what about me? What did all my hard work get me?”
It’s a sentiment I heard often, talking with southeast Kansas’ sick and poor. Everyone is convinced that someone else is getting a better deal, that somewhere a horde of Kansans are gaming the system and preventing the truly needy from getting help. It’s a sentiment that Brownback eagerly exploits when attacking Medicaid expansion and other forms of public assistance. In his January State of the State address, he pointed to a black single mom in the audience, saying she had been on welfare and was now in a full-time job. He asked her to stand with her teenage son, then lauded the “courage and perseverance” of her redemptive journey. “We will continue to move forward,” he vowed, “helping people move from dependence on the government to independence.”
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Dr. Julie Griffin at the evangelical First Assembly of God Church.
Martha and Mike Talbot are among several members of Julie Griffin’s church who turn to her health center for care. They’re both in their mid-50s and have two 11-year-olds. They’re also both conservatives who agree with Brownback’s common-sense assertion that the best way for folks to get health insurance is to get a job. That had worked great for their family, until Mike got laid off last year.
Healthcare was high on the list of things the family had to sort out to weather the crisis. Mike got coverage through the Department of Veterans Affairs, and the kids got covered through the Children’s Health Insurance Program, the Clinton-era Medicaid expansion that cut the rate of uninsured children in the United States by half. But Martha was out of work, too. In a stroke of bad timing, she’d recently left a dead-end job, taking the sort of career risk that a two-income household affords, and transitioned onto her husband’s plan while looking for new work. When Mike got laid off, they assumed Martha could get Medicaid. And that would have been true if Kansas’ political leaders had not rejected expansion. But the part-time gigs Mike had cobbled together made them a few pennies too rich under Kansas’ current tight eligibility rules. “We probably had $1,000 a month coming in,” Martha says. “I couldn’t imagine that being too much, but that’s what they said.”
Then one morning, soon after losing coverage, Martha woke up feeling like her heart was pounding through her fingertips. “I didn’t want to go to the hospital, because I knew I didn’t have insurance,” she says. She waited a couple of hours, but given a family history of heart problems, she finally got anxious enough to go to an ER. Her heart had gone into atrial fibrillation. She spent three days in the hospital; afterward, there was a sleep study and a stress test and appointments with a cardiologist. The total cost, she estimates, was nearly $14,000—roughly their family income for the year. Beyond unaffordable.
Each month, the couple now pay $50 to the hospital and $10 each to the cardiologist and labs, while they beg the hospital to write off their debt. Mike has found a new job, and they’re feeling optimistic again. But Martha’s no longer sure what to think about the safety-net programs she’d assumed were available. “We’ve always taken care of ourselves, and the one time we needed them, we weren’t able to use them.” She still agrees with Brownback that jobs are the best route to insurance, but Medicaid expansion is now an open question. “Sometimes the income isn’t enough to support their family and pay for insurance. So I think Kansas could let a few more people come in.”
In writing the Affordable Care Act, Congress meant to provide seamless layers of assistance for working people. Anyone making between 100 and 400 percent of the federal poverty level would qualify for a tax subsidy to purchase a plan on the exchange. Anyone below 138 percent could get Medicaid. When 36 states refused to create insurance exchanges, the administration set up its own. But the Supreme Court’s 2012 ruling has tied the federal government’s hands on Medicaid expansion in states that reject it. In Kansas, that left an estimated 78,000 people stuck in a coverage gap; they earn too much to qualify for Medicaid under the old rules, and not enough to qualify for private-insurance tax credits. An estimated 4 million people—the working poor—are stuck in this coverage gap in 21 states. Republicans control both legislative chambers in all of those states and the governor’s office in all but three. The median-income cap to qualify for Medicaid in this slice of red America is $8,840 a year for a family of three.
Large questions remain unanswered about the Affordable Care Act’s long-term impact, but one outcome is already clear: In the places where the law has been fully implemented, it has provided millions of Americans with coverage. In March, the Obama administration released an independent analysis of federal enrollment data, which found that the national uninsured rate has been cut by more than a third since the exchanges opened in October 2013, with 14 million adults insured through the law. More than half of them are enrolled in Medicaid.
A growing number of Republican leaders around the country have begun to walk back their opposition. In January, Indiana negotiated a “market-based” expansion plan that would force some costs onto beneficiaries and punish missed payments with temporary termination. It’s a controversial idea, but the Obama administration’s approval was understood as a message to GOP leaders everywhere: We’ll work with you to save face if you get on board.
Brownback, meanwhile, made Kansas the first state in the nation to fully privatize Medicaid. In 2013, three private insurers began competing as HMOs; if they can bring down costs without reducing benefits or provider payments, they get to keep the savings as profit. The experiment is off to a shaky start: According to state data, the companies have already lost a combined $170 million. Meanwhile, providers are complaining about an expanding list of treatments they can’t offer without preapproval.
In March, Kansas State Representative Jim Ward, a Democrat who has led the Medicaid-expansion campaign inside the legislature, finally secured a committee hearing on the topic. He marshaled more than 150 doctors, hospital executives, business owners, and former state officials to submit testimony in favor of expansion. Few healthcare advocates expected the hearing to prompt a shift in policy, at least in the near term. Nonetheless, Americans for Prosperity policy analyst Akash Chougule swooped in from Washington to testify. “We certainly plan to hold accountable any legislator who supports this misguided scheme,” he warned the committee. Every elected official in Kansas knows that’s no empty threat.
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RaDonna Kuekelhan’s greatest sorrow now isn’t her failing health. Rather, it’s the dependence that being uninsured has forced upon her. Since she can’t turn to the state for help, she’s had to burden her sister’s family. RaDonna lives in their house and depends on them for everything from food to transportation. Her only independent link to the outside world is through a group of pen pals she’s been collecting since third grade. Until recently, her daily ritual was walking a few blocks to the post office to send off her letters. Now, her breathing is so labored that Cathy won’t allow her to attempt the trip on her own. RaDonna gives Cathy $100 a month—nearly half her income—and earns the rest of her keep by folding the laundry and doing dishes. “She can’t do the whole sinkful of dishes without stopping and sitting down for a while,” says Cathy, who nonetheless accepts her sister’s contributions. She knows that RaDonna’s most acute problem is the crippling depression that’s developed alongside her physical deterioration. She needs to feel useful.
RaDonna finally got some good news in April. With the help of a paralegal, she was able to qualify for disability insurance, which automatically made her eligible for Medicaid. The coverage has relieved some of her financial anxieties, but it came too late to change her prospects for recovery. “This disease is going to be what takes her life,” Griffin says.
RaDonna has only one more drastic treatment option: She could avoid the risks of swallowing food by having a hole cut in her stomach for a feeding tube. Given RaDonna’s emotional state surrounding her loss of independence, Griffin knows this would not be a sustainable solution. “I think there’s a case to be made,” Griffin says, “that if we had gotten her Medicaid a long time ago, when I met her, that we would have gotten her to a specialist and they would have been able to treat her, rather than just closing off her esophagus.”
This is the hard reality of practicing medicine in a place like southeast Kansas, Griffin says. It too often leaves you defeated. “It’s so hard to be the doctor who has to reveal: ‘I’m not giving you a death sentence by telling you you have cancer. I’m giving you your prognosis because you don’t have coverage.’”