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Obamacare May Mean High Drug Costs For Floridians With HIV

Fri, 10/31/2014 - 12:33

When Tony Smith lost his job as a corporate paralegal two years ago, a state program stepped in to help him keep his health insurance — and the expensive drugs his life had depended on since his 2008 HIV diagnosis.

Now Smith, 42, of Coral Springs, has been told he must sign up for coverage on Florida’s federally run insurance exchange or the state will stop helping him pay his premiums.

“The landscape of healthcare has changed, and with the passage of the Affordable Care Act we have the opportunity to access and enroll in cost-effective health plans,” an official at the AIDS Insurance Continuation Program wrote in a letter to Smith and other AICP beneficiaries.

But it is not clear that ACA insurance plans will be cheaper — or even affordable — for those with HIV and AIDS, according to patient advocates.

This copyrighted story comes from the Miami Herald, produced in partnership with KHN. All rights reserved.

Last spring, two nonprofit groups filed a federal civil rights complaint alleging that some Florida insurers were discriminating against people with HIV by charging “inordinately high” rates for HIV medication on ACA plans.

In their complaint, the AIDS Institute and the National Health Law Program singled out CoventryOne, Cigna, Humana and Preferred Medical for discouraging people with HIV “from enrolling in those health plans — a practice which unlawfully discriminates on the basis of disability.”

The ACA prohibits insurers from discriminating against consumers because of preexisting medical conditions. The four companies all offered 2014 plans in Florida, including in Miami-Dade and Broward counties, and plan to do so again in 2015, with the exception of Preferred Medical in Broward.

It is an important issue for Florida, which has the third-highest rate of HIV infection in the nation, and for Broward and Miami-Dade, which have the highest rates statewide. Almost 95,000 people in Florida have been diagnosed with HIV. Many of them have coverage for the first time thanks to the health law, activists say. But without proper regulation, high drug prices could act as a de facto form of discrimination, said Carl Schmid, deputy executive director of the Tampa-based AIDS Institute, one of the groups that filed the civil rights complaint.

In a statement to the Miami Herald last week, Coventry spokesman Walt Cherniak said the insurer’s 2014 plans provided access to HIV care “that follows the latest Department of Health and Human Services guidelines and evidence-based practices.” Humana, Preferred Medical and Cigna also issued statements to the Herald denying any discrimination. Humana said it places HIV drugs on its highest — and most expensive — tier because of their cost and clinical complexity.

The details of 2015 insurance plans on the federal exchange in Florida will not be announced until early November, leaving Smith and other Floridians with HIV in limbo. Open enrollment will begin Nov. 15.

“I’m drowning in paperwork trying to figure out what sort of plan I’ll need,” Smith said. “And I’m really worried that I’m just going to be stuck if enrollment opens and there aren’t any I can afford.”

And what if Healthcare.gov, the enrollment website, is again derailed by the kinds of problems that marred its introduction, preventing people from signing up for coverage for months? “I don’t even want to think about that,” Smith said.

HHS said the complaint, filed in May, is still under review by its Office for Civil Rights, which protects consumers from discrimination. The complaint asked the OCR to prevent the four companies from offering plans with discriminatory costs.

Harvey Bennett, a spokesman for the Florida Office of Insurance Regulation, said the state was also investigating whether the plans were “unfairly discriminatory.”

Not all insurers on the exchange are being accused of discrimination. Aetna, Ambetter and Molina placed most of their HIV drugs on less-expensive tiers. Florida Blue, the state’s largest health insurer, listed all but one HIV drug on lower tiers requiring monthly co-pays of $10 to $70.

But the market has seen a general trend toward plans with high deductibles and high co-insurance models for expensive drugs, including those for hepatitis C and multiple sclerosis, according to Steven Ullmann, director of the Center for Health Sector Management and Policy at the University of Miami’s School of Business Administration.

Ullmann said cost-sharing presents a moral dilemma. “It’s one thing if you’re dealing with an elective pharmaceutical, but it’s another where you’re looking at drugs and treatment plans that affect one’s ability to sustain quality of life,” Ullmann said. “But insurance companies are businesses, as well, and one recognizes their incentive structure: to avoid taking on too much risk.”

Ullmann said companies that offered low-cost HIV drugs last year may change their behavior this year based on the plans of their competitors. That means that until insurers reveal their rates for 2015, Smith and others with HIV will not know whether plans will place HIV drugs in high- or low-cost tiers.

“What we’re really worried about is a race to the bottom,” said Wayne Turner, a staff attorney at the National Health Law Program, which helped file the civil rights complaint. Turner said he fears the high-cost plans may have “skewed the market” and that in order to avoid having their risk pool burdened by people with expensive health needs, competitors may increase what they charge for HIV drugs.

Some of the ACA plans have other drawbacks, such as limiting patients to a 30-day supply of medicine instead of a 90-day supply and requiring prior authorization from insurers before every refill. A 2012 study conducted by the pharmacy chain Walgreens and published by the Centers for Medicare and Medicaid Services, which regulates plans sold on the exchange, found that patients with 90-day supplies took their medicine more regularly and had greater cost savings than those with 30-day supplies.

Turner said that with the confusion of the exchange’s launch out of the way, the time was right “for the federal government to send a strong message to plans that they can’t design their benefits in a way that discriminates against people with HIV.”

In a statement to the Miami Herald, Aaron Albright, a spokesman for CMS, called the law’s anti-discrimination provisions “effective” and said the federal government was investigating complaints of discrimination.

Smith said he wouldn’t mind switching to the ACA if he knew that plans with sufficient coverage were waiting for him.

But he knows he will be in trouble if all of the plans look like one Humana plan from last year mentioned in the complaint. The terms of the “silver,” or mid-range, plan would require him to meet a $1,500 prescription deductible and then pay 50 percent of his total drug costs. For his Atripla prescription, a once-daily anti-retroviral, that would mean a monthly payment of around $1,000 until he hit his $6,300 out-of-pocket limit.

“That’s just such a crazy jump from what I’m paying now,” said Smith, who is currently covered by an off-exchange Cigna plan. “I’m already trying to save by not going to the doctor for minor stuff.”

Right now, AICP, the program that helped Smith keep his insurance when he was laid off, pays $750 of his $803 monthly premium. He is responsible for a monthly $110 co-pay for medication. Without insurance, Atripla costs more than $6,300 every three months. AICP, Smith said, “saved my life.”

The program receives about half of its funding from the federal Ryan White HIV/AIDS Program, which helps provide medical care for about 500,000 HIV-positive people nationwide. By federal law, the Ryan White program is the “payer of last resort,” meaning many Floridians who can get cheaper coverage from another source, such as an ACA exchange, will now be required to do so.

Other HIV-positive patients will also be funneled to the exchange, including some clients of the state-administered AIDS Drug Assistance Program, which helps pay for HIV drugs for people who have low incomes or little or no insurance. The program receives 90 percent of its funds from the Ryan White program, meaning that those whose medication costs can be reduced by going onto an exchange will have to do so.

Nathan Dunn, a spokesman for the Florida Department of Health, said that this year about 4,000 of the 14,000 people enrolled in ADAP will have to sign up for federal marketplace coverage. The state would be in danger of losing its Ryan White program funding if it did not move people onto the exchange.

At the Legal Aid Society of Palm Beach County, which helps Ryan White program clients, staff attorney Vicki Tucci said many consumers with HIV who enrolled last year were unhappy with their plans. Tucci counseled about 30 people with HIV who said they discovered too late that the insurance plans they had purchased either didn’t offer enough coverage to make their HIV medicines affordable or didn’t include long-time healthcare providers in their network.

“These were people who were often signing up for health insurance for the first time,” said Tucci, who served as a marketplace “navigator” assisting new enrollees last year. She said she was able to help about half of the 30 clients who came to her switch plans.

For his part, Smith is trying to educate himself about the best way to pick a health insurance plan.

He has learned that low premiums are often accompanied by high deductibles and high co-insurance rates, and he plans to talk with a navigator who can guide him through the system. But he worries that others with HIV might not be as well-prepared.

“There are people out there who, if they don’t do their homework, they’re really going to get sucker-punched [next year] when they start paying their bills,” Smith said.

For Families With Mixed Immigration Status, Health Insurance Is A Puzzle

Fri, 10/31/2014 - 05:00

 

Jessica Bravo walks house-to-house in the piercing Southern California heat. Over and over, at doorsteps around Orange County, she asks the same question: “Are you insured?”

Getting an answer isn’t always easy. Doors slam in her face. She gets shooed from porches. And sometimes people cut her off mid-spiel.

Bravo is a paid health outreach worker for the Orange County Congregation Community Organization, a faith-based nonprofit. Her job is to inform people about getting health insurance under the nation’s landmark health law, the Affordable Care Act.

“A lot of people don’t know about this new law … this opportunity for health insurance,” said Bravo, a 19-year old Costa Mesa resident.

Until a few months ago, Bravo didn’t actually know coverage was an opportunity for her, as well.

She is an undocumented immigrant from Mexico. Most people without papers can’t get health insurance under the ACA. But last year, Bravo and her 21-year-old brother Daniel qualified for the Deferred Action for Childhood Arrivals (DACA) program – a 2012 initiative that grants temporary legal status to certain undocumented immigrants who were brought to the United States as children.

The law applies to people who came to the U.S. before turning 16, are in school or a high school graduate and are now under the age of 33.

Jessica Bravo, 19, was granted DACA (Deferred Action for Childhood Arrivals) status, but didn’t know she could also qualify for Medi-Cal (Photo by Heidi de Marco/KHN).

They can obtain a work permit, a driver’s license, a Social Security number, a two-year reprieve from deportation and — as Bravo now realizes — the opportunity to get health insurance through Medi-Cal, California’s insurance program for poor and disabled people.   Only a few other states offer similar options.

Now studying politics and ethnic studies full time at Golden West College in Huntington Beach, Bravo can’t work as much as she used to. Her monthly income of $960 likely would make her eligible for Medi-Cal.

Figuring out her options under the law was especially difficult for Bravo, whose family is of “mixed status.” That is, some have federal authorization to be in this country and others don’t.  While anyone can buy insurance privately, people without legal status are not allowed to buy insurance on the exchange or participate in most government program such as Medicare, non-emergency Medicaid or the Children’s Health Insurance Program.

Her parents are in the country without permission, as is her older brother Luis, 22, who did not qualify for DACA. Her other brother Daniel, 21, was granted DACA status and qualifies for the same benefits she does. And her brother Alex, 11, is a U.S.-born citizen, covered through California Kids – a nonprofit health insurance plan.

‘Stuck In The Middle’

The family’s history is complicated. After several failed visa attempts, her father Enrique Bravo crossed the border illegally in 1996. His wife, Virginia, tried to cross by hiding in a car but was caught by border patrol agents. Desperate to join her husband, she tried again and made it across six months later. Three-year-old Jessica and her older brothers later crossed with legal-resident relatives in a car.

“I’m 100 percent Mexican…but all my memories growing up are from the United States,” said Jessica. “It’s like I’m stuck in the middle…I’m neither from here or there.”

As the older children grew up, getting health care proved dicey. The family tried to stay below the radar. This meant visiting the doctor only when absolutely necessary — and always paying cash.

Photos of the Bravo family, Enrique, his wife, Virginia, and their children Jessica, Daniel and Luis, taken in 2001, five years after arriving to the United States (Photo Courtesy of the Bravo Family).

They were, like many immigrants, fearful of exposing the family’s unauthorized status and risking deportation, for themselves and their children.

Eventually Enrique, an electrician, found a job that offered health insurance, and for several years the family was insured. But he got laid off in 2006. From then on, they were forced to rely on local community clinics that provide care on a sliding pay scale.

“I remember my parents telling me that I was no longer going to be insured under their plan,” said Jessica. “I just tried to eat healthy.”

Her biggest concern now, she says, is that one of the others will get sick and the family won’t be able to pay for care.

“Even though that fear is gone for me, it’s still very real for my family,” said Bravo, who is in the process of renewing her DACA status for another two years.

“It’s difficult to grasp that I have this privilege, yet my parents who worked twice as hard, don’t have anything.”

Recent events have compounded the family’s worries.

Jessica’s brother Luis was recently detained by agents from Immigration and Customs Enforcement as a result of a tip arising from a prior conviction for driving under the influence. It’s unclear what will happen until the immigration court hears his case and decides whether he can remain in the U.S.

“It all seems like a dream…it happened so fast,” said Jessica. “We’re doing everything we can to stop his deportation.”

One Fall Can Change Everything

Weeks ago, Jessica’s mother Virginia stumbled and fell to the ground in front of their Costa Mesa apartment, spilling the milk she’d just bought. The 48-year-old former hairstylist hurt her arm, but despite feeling a sharp pain she won’t be visiting the emergency room.

“We can’t afford it,” Virginia Bravo said. The mother of four has been unemployed for over a year and is more concerned about stocking the empty refrigerator than seeking treatment.

This KHN story was produced in collaboration with Univision. It can be republished for free (details).

She knows all too well that without insurance an unexpected injury could leave them bankrupt.

Last year, Enrique had to be rushed to the emergency room. He woke up in the middle of the night with extreme paranoia, unable to catch his breath, and feeling numb.

He was having a panic attack. The bill for the two-hour hospital stay was about $6,000. Already struggling financially, the family had to find a way to pay cash.

“At first I refused to go to the hospital,” he said. “I knew it would be expensive.”

The 44-year-old says he struggles to earn at least $2,250 each month as a self-employed electrician – the exact amount he needs to pay rent.

Any extra money is used to buy food and pay bills. Saving for an emergency is impossible, the family members said.

“We’re poor, but rich in health and family unity,” Virginia Bravo said.

Living in a mixed-status family has been challenging, but it has also brought them closer, she said. The whole family has been involved in campaigning for immigration reform and hopes the ACA will eventually include coverage for undocumented immigrants.

“People don’t know what we had to go through to get here,” said Virginia. “We made it across … we’re the lucky ones.”

“We don’t want anything for free,” she said. “If we had an opportunity to buy health insurance, we would find a way to pay for it.”

Benefits ‘Essential’ In N.J. But Not In Pa.

Thu, 10/30/2014 - 12:36

Every “qualified” health insurance plan sold on the Affordable Care Act individual or small business marketplaces must include 10 essential health benefits.

They are mandated by the law, and cover everything from emergency services and hospitalizations to maternity care and prescription drugs.

But there’s one little rub: Each state has a surprising amount of leeway to define what is essential. And benefits in Pennsylvania are a lot stingier than in New Jersey.

“Pennsylvania is one of the states that doesn’t do well,” says Janet Weiner, associate director of health policy at the Leonard Davis Institute at the University of Pennsylvania.

In a study published last week with the Robert Wood Johnson Foundation, Weiner and colleague Christopher Colameco laid out how “essential” benefits can vary.

Bariatric surgery is essential in 23 states (45 percent) but only five (10 percent) cover weight-loss programs.

Chiropractic visits are essential in 45 states (88 percent); only five states (10 percent) pay for acupuncture.

In Pennsylvania, chiropractic care is the only practice identified from a list of 11 condition-specific services. Hop over to New Jersey, and chiropractic care along with six other condition-specific services are covered.

A similar pattern holds for infertility care, Weiner said. It’s essential in New Jersey, not in Pennsylvania.

Getting a standard every state would accept was the Department of Health and Human Services’ job. But as the days ticked down to last year’s marketplace launch, the agency decided to punt.

Weiner says that was probably wise. Trying to establish a new standard in the run-up to the ACA “would have been quite bloody.” That’s because state-mandated benefits often follow long battles among various advocacy groups and politicians.

Instead, HHS opted to let each state define its own essentials for the first two years. Last year and again this year, states can choose from 10 benchmark plans: One of the three largest federal employee plans; the state’s largest non-Medicaid HMO; one of the three largest small-group plans; or one of the three largest state employee plans.

This copyrighted story comes from the Philadelphia Inquirer, produced in partnership with KHN. All rights reserved.

“This was a reasonable alternative because it allowed HHS to take advantage of plans that were already enforced in the states and already had existing pricing,” she says.

Pennsylvania defaulted to its largest small-group policy, Aetna’s Point of Service plan. New Jersey picked a Horizon HMO small-group plan.

HHS is set to announce an interim policy in 2016. But after gazing into her crystal ball, Weiner doesn’t see that happening. “The same battles and the same difficulties would appear to them in 2016, which is not that far away,” she says. “So I wouldn’t be surprised if this interim policy continues.”

So really, how much of a game changer are the 10 essential benefits if the same limits that existed pre-ACA remain? Weiner says they have added services such as maternity care and preventive care that weren’t routinely available before.

She also understands why someone in Pennsylvania needing hearing aids, which are not covered, would be upset that across the river those same hearing aids are deemed essential benefits.

“These are real issues for people needing these services,” she says. “You don’t have to have a lot of inside-baseball knowledge to understand the issue.”

How Obamacare Went South In Mississippi

Wed, 10/29/2014 - 14:22

In the country’s unhealthiest state, the failure of Obamacare is a group effort.

The lunch rush at Tom’s on Main in Yazoo City, Mississippi, had come to a close, and the waitresses, having cleared away plates of shrimp and cheese grits, seasoned turnip greens and pitchers of sweet tea, were retreating to the counter to cash out and count their tips.

It didn’t take long: The $6.95 lunchtime specials didn’t land them much, and the job certainly didn’t come with benefits like health insurance. For waitress Wylene Gary, 54, being uninsured was unnerving, but she didn’t try to buy coverage on her own until the Affordable Care Act forced her to. She didn’t want to be a lawbreaker. Months earlier, she had gone online to the federal government’s new website, signed up and paid her first monthly premium of $129. But when her new insurance card arrived in the mail, she was flabbergasted.

Young people in Mississippi are dealt a tougher hand than those in most other states. The state ranks last in life expectancy, per capita income, and children’s literacy. Here, three young men hang out on Winter Street in Jackson, the state capital. (Photo by Jon Lowenstein)

“It said, $6,000 deductible and 40 percent co-pay,” Gary told me at the check-out counter, her timid drawl giving way to strident dismay. Confused, she called to speak to a representative for the insurer Magnolia Health. “’You tellin’ me if I get a hospital bill for $100,000, I gotta pay $40,000?’ And she said, ‘Yes, ma’am.’”

Never mind that the Magnolia worker was wrong — her out-of-pocket costs were legally capped at $6,350. Gary figured with a hospital bill that high, she would have to file for bankruptcy anyway. So really, she thought, what was the point?

“This ain’t worth a tooth,” she said.

She canceled her coverage.

The first year of the Affordable Care Act in Mississippi was, by almost every measure, an unmitigated disaster. In a state stricken by diabetes, heart disease, obesity and the highest infant mortality rate in the nation, President Barack Obama’s landmark health care law has barely registered, leaving the country’s poorest and perhaps most segregated state trapped in a severe and intractable health care crisis.

“There are wide swaths of Mississippi where the Affordable Care Act is not a reality,” Conner Reeves, who led Obamacare enrollment for the University of Mississippi Medical Center, told me when we met in the state capital of Jackson. Of the nearly 300,000 people who could have bought coverage, just 61,494—some 20 percent—did so. When all was said and done, Mississippi would be the only state in the union where the percentage of uninsured residents has gone up, not down, according to one analysis.

This KHN story also ran in Politico Magazine. It can be republished for free (details).

To piece together what had happened in Mississippi, I traveled there this summer. For six days, I went from Delta towns to the Tennessee border to the Piney Woods to the Gulf Coast, and what I found was a series of cascading problems: bumbling errors and misinformation ginned up by the law’s tea party opponents; ignorance and disorganization; a haunting racial divide; and, above all, the unyielding ideological imperative of conservative politics. This, I found, was a story about the tea party and its influence over a state Republican Party in transition, where a public feud between Gov. Phil Bryant and the elected insurance commissioner, both Republicans who oppose Obamacare, forced the state to shut down its own insurance marketplace, even as the Obama administration in Washington refused to step into the fray. By the time the federal government offered the required coverage on its balky healthcare.gov website, 70 percent of Mississippians confessed they knew almost nothing about it. “We would talk to people who say, ‘I don’t want anything about Obamacare. I want the Affordable Care Act,’” remembered Tineciaa Harris, one of the so-called navigators trained to help Mississippians sign up for health insurance. “And we’d have to explain to them that it’s the same thing.”

Even the law’s vaunted Medicaid expansion, meant to assist those too poor to qualify for subsidized private insurance, was no help after the U.S. Supreme Court  ruled that states could opt out. Gov. Bryant made it clear Mississippi would not participate, leaving 138,000 residents, the majority of whom are black, with no insurance options at all. And while the politics of Obamacare became increasingly toxic, the state’s already financially strapped rural hospitals confronted a new crisis from the law’s failure to take hold: Facing massive losses in federal subsidies imposed by the law and seeing no rise in new Medicaid patients, hospitals laid off staff and shuttered entire departments.

“We work hard at being last,” snarked Roy Mitchell, the beleaguered executive director of the Mississippi Health Advocacy Program, about the state’s many missteps.

With the first year of open enrollment behind them, Mississippi’s small cadre of health advocates were feeling beaten down and betrayed by the Obama administration and its allies who, they suspect, viewed Mississippi as a lost cause and had directed their efforts elsewhere.

“Even a dog knows the difference between being tripped over and being kicked,” Mitchell added.

Kudzu vines encroach on everything in their path in rural Mississippi. (Photo by Jon Lowenstein)

A RURAL GHETTO

It is hard to find a list where Mississippi doesn’t rank last: Life expectancy. Per capita income. Children’s literacy. “Mississippi’s people do not fare well,” wrote Willie Morris, a seventh-generation, native son who grew up in Yazoo City, once a bustling trading center perched on the southern edge of the cotton-rich Delta. Today, nearly half of Yazoo City’s residents live in poverty; its people, like the Delta’s vast swamps, have been drained away.

While neighboring Southern states ushered their agricultural economies into the modern world — building vibrant, commercial engines like Birmingham, Atlanta and Charlotte with opportunities for blacks to move into the middle-class — Mississippi remains a rural landscape. Signs of the impoverished post-Civil War South are everywhere: irrepressible kudzu vines pressing into the glass door of an abandoned building; tipsy wooden shacks that look at first glance neglected and forlorn are instead occupied with life. “The Depression, in fact, was not a noticeable phenomenon in the poorest state in the Union,” wrote Eudora Welty, when she photographed Mississippi in the 1930s. It remains the poorest state today: 22 percent live in poverty.

None of which bodes well for the health coverage of the state’s 3 million people. Small businesses that dominate the economy typically don’t offer health insurance, and despite its residents being down-at-the-heels, Mississippi’s public health program for the poor is one of the most restrictive in the nation. Able-bodied adults without dependent children can’t sign up for Medicaid no matter how little they earn, and only parents who earn less than 22 percent of the federal poverty level — about $384 a month for a family of three — can enroll. As a result, one in four adult Mississippians — cashiers, cooks, housekeepers, truck drivers — goes without coverage. And African-Americans carry much of that burden: one in three adults is uninsured, compared to one in five whites.

It is difficult to untangle the state’s dismal health — rampant obesity, diabetes, heart disease —from its antebellum past. Generational upward mobility happened elsewhere; here, families have remained poor and undereducated, holding out against change wrought by the New South. The practice of going to a doctor for preventive care continues to lag in Mississippi for practical reasons, including no insurance and little money, but also for cultural ones. For blacks, there remain deep wells of distrust dating back to Jim Crow laws that barred them from the front doors of doctors’ offices, and to when black women were routinely sterilized in what became known as “Mississippi appendectomies.” As a result, Mississippians are less likely than the rest of the country to seek primary care for chronic conditions and more likely to turn to hospitals when those ailments become more serious and expensive.

Gruesome ends await.

Mississippi has the highest rate of leg amputations in America and the lowest rate of Hemoglobin H1c testing, used to monitor and prevent diabetes complications. The amputation rate for African-Americans is startling: 4.41 per 1,000 Medicare enrollees versus 0.92 for non-blacks. The state also has high breast cancer death rates, even though it has a low breast cancer incidence rates. The cancer often isn’t found until it’s too late.

 

The state also has high breast cancer death rates, even though it has a low breast cancer incidence rates. The cancer often isn’t found until it’s too late.

IN THE LEAD

Mississippians are all too familiar with the dirge of bleak statistics. During my travels, I often heard, “We know what the rest of the country thinks of us.” It would become a point of pride, then, that in 2007, Mississippi was leading a race it wanted to win. That fall, a full year before Obama’s election to the White House put national health care reform on the agenda, the governor, Haley Barbour, called up the newly elected state insurance commissioner Mike Chaney, a Vietnam veteran from Vicksburg. The two Republicans had been friends since college; Chaney had been the rush chairman for Sigma Alpha Epsilon at Mississippi State University when Barbour pledged the fraternity. Now, the governor had an assignment for his old friend.

“He said, ‘Chaney, I want you to get involved in something that the Heritage Foundation had talked about,’” Chaney, 70, recalled when I spoke to him at his Jackson office in June. Barbour, a folksy titan who had returned to rule over Mississippi politics after a successful career as a Washington super lobbyist and national Republican Party chairman, had enraged advocates for the poor with a series of stringent new restrictions on Medicaid. Now he was keen to take up the conservative think tank’s ideas to aid one portion of those without health insurance: “The largest group of the uninsured in Mississippi when I was governor were the employees of small businesses,” Barbour told me. He tasked Chaney with laying out how Mississippi could set up an online marketplace where the state’s many small businesses could pool their purchasing power to shop for medical coverage.

The idea, at the time, was seen as a conservative one. It was part of the health reform law Republican Gov. Mitt Romney had signed in Massachusetts in 2006, and Barbour was touting it as an economic development measure. “I went from not liking it, to really falling in love with it,” Chaney told me. “You know, like you didn’t like the girl in the third grade and you ended up marrying her?”

By 2010, when Congress passed the Affordable Care Act, planning was well underway for a state-based exchange in Mississippi. “We had no elected officials who were against what we were doing,” Chaney insists today.

As Chaney pushed ahead—hiring technology vendors, convening committees and holding town hall meetings—he expected minimal interference. In December 2010, more than 100 elected officials, agency heads, business leaders and health insurers had attended a “Stakeholders Summit.” Six months later, Barbour wrote a letter to Kathleen Sebelius, Obama’s secretary of Health and Human Services, designating Chaney and the Mississippi Insurance Department as the “proper authority” to apply for federal ACA funding to build the exchange. Barbour, a pragmatic dealmaker, made clear his interest came “before President Obama took office and much earlier than Obamacare was enacted,” and that his plan would meet “the needs of Mississippi, not what is right for Washington.”

Chaney moved ahead swiftly. Over the summer of 2011, with $21 million in federal grants, he hired the firm Getinsured.com to build the state’s site—christened “OneMississippi.com”—and held weekly meetings with his team, whom he had instructed to read Landmark, the Washington Post’s guide to the health law. (“We bought 20 copies,” Chaney told me, holding the book up in his office. “It’s a great read.”) Blue Cross Blue Shield, which had more than 80 percent of the insurance market in Mississippi, assured Chaney it was in. The Center for Mississippi Health Policy, a non-partisan research group, estimated that 1 in 10 nonelderly residents would be eligible to buy coverage through the exchange and that 230,000 low-income Mississippians would be able to receive federal tax credits, totaling $900 million a year, to help them purchase insurance on the exchange.

At the end of that summer, OneMississippi.com billboards went up across the state at football stadiums—the town squares of Mississippi. “Your One Stop Health Choice,” the ads read, next to a picture of Chaney’s smiling face. Chaney anticipated federal regulators would approve the site by the end of the year. The website was ready. Mississippi would get something right for a change.

The elected insurance commissioner of Mississippi Mike Chaney holds the unenviable distinction of submitting the only state exchange application to be turned down by the federal government. (Photo by Jon Lowenstein)

INSURRECTION

While Chaney waited for federal approval, however, the crowd’s mood began to sour.

The Affordable Care Act had descended on Mississippi like so many prior federal edicts: as an invasion from the North that fractured along racial lines, stoking grievances that still lingered since the Civil War, Reconstruction and the Civil Rights era. This latest incursion — the health law — gave rise to a vicious rebellion among conservative whites in a state that arguably had the most to gain. In June 2012, after the Supreme Court upheld the law’s core principle — requiring most Americans obtain health coverage or pay a penalty — Mississippi Tea Party co-founder Roy Nicholson issued a florid order to the ground troops: “To resist by all means that are right in the eyes of God is not rebellion or insurrection. It is patriotic resistance to invasion.”

The Tea party’s call to cut federal taxes resonated with Mississippians who have the lowest per capita income — at $33,073 — in the nation. “You’re talking about folks who get up at four in the morning and go to work hauling logs or work in a machine shop and come home at night at 6 pm, and their understanding of government is that gap between net pay and gross pay. As far as why [the government] took it, that doesn’t compute,” Marty Wiseman, a political science professor emeritus at Mississippi State University, told me. Summing up the sentiments broadcast on Mississippi talk radio, Wiseman, a Democrat who is white added, “Then you throw in that ‘Muslim’ black president up there, and it’s like throwing a match on gasoline.”

And yet, as much as Mississippi conservatives abhor the federal government, American taxpayers spend dearly to keep the state solvent. Mississippi receives about $3 for every $1 it sends northward to Washington; nearly half of the state’s annual budget depends on federal disbursements. “If you cut that out,” Wiseman said, “we would cease to be a going concern.”

A garrulous giant of a man who prefers suspenders and bow ties, Wiseman, 63, is pained by his state’s seemingly pathological hatred of Washington.  “It’s still hard to explain the old embrace of the lost cause of the Civil War where we came home ragtag, and ‘By golly the South shall ride again,’” he said of white Mississippians. “There’s a certain resentment that I’d rather live in my double-wide in the country and find a way to make it.”

The Affordable Care Act had descended on Mississippi like so many prior federal edicts: as an invasion from the North that fractured along racial lines

Whites continue to dominate Mississippi’s elected elite, despite the fact that Mississippi is home to a higher percentage of African Americans — 37 percent — than any other state. Black residents are spread out among the state’s four congressional districts, diluting their political power, and three of the four House members who represent Mississippi are white Republicans. Democrats lost their last vestige of control in 2012 when tea party-backed candidates helped Republicans gain control of both houses of the legislature for the first time since Reconstruction.

After Barbour’s term ended in January 2012, the tea party’s roots reached the governor’s mansion. Phil Bryant, the son of a diesel mechanic who was raised in the Delta, had served as Barbour’s lieutenant governor, but his politics skewed harder right. When he was elected, the state tea party jubilantly declared him the nation’s first tea party governor, a label he embraced. Conservative activists admired Bryant’s uncompromising opposition to illegal immigration, his vows of austerity and his law enforcement credentials — he had been a jailer and deputy sheriff earlier in his career. That he loathed the Affordable Care Act was a given.

Soon after Bryant was sworn in, the Obamacare fuse was lit by the Mississippi Center for Public Policy, a member of a national network of think tanks that reportedly receives funding from the billionaire Koch brothers. As Mississippi’s plan for a state exchange garnered national press and became something of an embarrassment for the conservative faithful, the think tank’s president, Forest Thigpen, seized the moment to come out against it. The insurrection urged by tea party founder Nicholson was on, and those seen as helping to put the law into place were now considered traitors.

Chaney didn’t see the ambush coming.

On the morning of July 12, 2012, just weeks after the Supreme Court had upheld the Affordable Care Act’s contentious individual mandate, Chaney was flying to Tupelo in a state plane during a driving rainstorm when his phone rang. It was Thigpen, who was hosting a luncheon in Jackson later that day with the Cato Institute, the libertarian Washington think tank, for some 200 guests, including Chaney. “He said, ‘I want to know if you want to make some comments,’” Chaney recalls. “And I said, ‘Forest, why would I make comments? This is your meeting.’… I said, ‘Let me call you back. We’re trying to land here, and we can’t see the runway.’” The pilot missed the touch down.

When Chaney returned to Jackson later that morning, the governor phoned Chaney to say he wouldn’t be there. “I should have known at that point that I had a problem,” Chaney says.

Chaney and his aide were the last two people into the ballroom, and Chaney remembers that the doors locked behind them. Bill Stone, chairman of the Thigpen’s board, led the ballroom in a prayer, “Lord, I thank you for today’s free exchange of ideas,” he said somberly, if not prophetically, according to a video of the event posted on YouTube. “We ask these things in Christ’s name.”

As forks and knives clinked against plates, in front of hundreds of attendees, Michael Cannon, Cato Institute’s health policy director, took to the podium. He insisted Mississippi abandon its exchange. The federal government “is desperate for Mississippi to do its dirty work,” Cannon told the audience, and “will do anything they can to bribe states to create them.” He then asked the elected officials in the room to raise their hands: “If you took an oath to uphold the U.S. Constitution and you believe this law is unconstitutional,” Cannon said, “then, I submit you have a duty to prevent this law from ever taking full effect.” The room erupted in applause.

“And at that point, they called me out,” Chaney recalled. Boos rumbled through the banquet hall. Caught off-guard, Chaney stood up. “I want to make it clear to you,” Chaney told the audience, fuming. “I’m a Republican. I support Romney. If you don’t like the exchange, vote in November and replace the man in the White House, and we’ll all be happy.” Sensing the obvious truth of it all, he sat down.

In his office this summer Chaney lingered over the memory. “They set me up,” he said.

Gentlemanly political customs were giving way to something more brusque. Mike Chaney—the former rush chairman at Mississippi State, friend of the powerful Haley Barbour—had been pushed out.

THE AMBUSH

Shortly after the disastrous Cato luncheon, Bryant called and asked Chaney to delay the plans for the exchange.

“I said, ‘Phil, I can’t do that,’” Chaney recalled. He told the governor the state was contractually obligated to its vendors. The pressure continued. In August, one of the governor’s attorneys asked Chaney to withdraw the plan’s blueprint from federal consideration. That same month, a confidant of Chaney’s who sat on the state government’s Personnel Board called to say Bryant had requested the board delay approval of a $3.5 million, federally funded ACA outreach contract meant to make residents aware of their coverage options. It would never be authorized. In a letter to Chaney, Bryant acknowledged the board had blocked the contract. “I simply do not consider it a wise use of taxpayer dollars,” he wrote.

As Barbour’s second in command, Bryant had publicly supported the then-governor’s push for a free-market exchange in Mississippi, but now Bryant wrote to Chaney, “I have never supported exchanges as they will operate under Obamacare,” which “will not be market-based in any significant sense” and would depend on “massive and unaffordable federal subsidies.”

Still, Chaney fought on, and in October 2012, a full year before the federal government’s website opened, his OneMississippi.com went live. The passageways to various federal databases had yet to be built and consumers could not yet qualify for subsidies, but health plans were on sale. The site still needed approval from The Center for Consumer Information and Insurance Oversight, the federal body that oversees the health care exchanges, before it could be an official ACA-sanctioned marketplace, and Chaney’s staff had been in weekly contact with CCIIO’s director, Gary Cohen, to make sure OneMississippi.com would eventually comply.

There is a timeless quality to many Mississippi landscapes – and a sense that the problems wrought by poverty in the state can’t be overcome. (Photo by Jon Lowenstein)

But after Obama’s reelection in November 2012 made clear his health law was headed toward implementation, Bryant decided to fight. Chaney wrote to CCIIO’s Cohen saying it was “our intent to implement and operate a state-based exchange for the citizens of Mississippi that is tailored to the unique needs of our state.” He continued: “As an elected official and the chief officer of the Department of Insurance, I am authorized by state law to submit this Exchange Declaration Letter on behalf of the State of Mississippi.” Bryant fired off his own letter to Sebelius, declaring that he was in “complete disagreement” with Chaney. By this time, Chaney and Bryant’s relationship had deteriorated to the point that Chaney had to get a copy of the letter from federal regulators. “I am disappointed with the submission of that letter, and I am exploring my options,” the governor wrote, adding that the health care exchange was a “gateway” for a law he opposed.

As the pitched political drama escalated, the objections among Tea Party activists piled up. An Obamacare-sanctioned exchange, with its generous subsidies, “would just invite more and more people on welfare and public assistance to flock to our state,” Laura VanOverschelde, chairwoman of the Mississippi Tea Party, told me. What’s more, she added, the types of plans for sale on the exchange “mimicked an old premise – that is health maintenance organizations in the 80s.” Those plans “dismally failed,” VanOverschelde said, “because people will simply not do what they need to, to take care of themselves. And Mississippi is a prime example.”

CCIIO remained quiet about Mississippi’s application all fall and into early winter. But by January, Chaney had lost his patience with Cohen. “I asked him point blank, ‘Damn it, Cohen, are you going to approve this or not?’” Later that week, Cohen called to say that Sebelius was rejecting Mississippi’s exchange, citing Bryant’s lack of support. “As a practical matter, it wasn’t going to work,” Cohen told me. Chaney’s exchange would have needed cooperation from the state Medicaid agency led by a Bryant appointee, and the governor could easily stymie funding and hiring decisions. “We’d didn’t feel that we should get involved in a battle between two elected state officials,” Cohen said.

Mississippi, ever the collector of unenviable distinctions, became the only state to have its exchange application rejected by the federal government. On Valentine’s Day, after four months of operation, OneMississippi.com went dark.

THE FALL OUT

In the weeks following the shutdown of the state exchange, the community organizers, physicians, employers and insurance brokers who had been the architects of the plan fell into disarray. “It was infuriating to see the governor gut all that work,” said Felicia Brown-Williams, director of public policy at Planned Parenthood in Jackson. “We were so far ahead of the curve.” Many African Americans blamed Obama for the failure. “I’ve heard leaders in the community, black leaders, blame Obama. That he should have planned it better,” Dr. Alice Graham, an ordained minister in Gulfport, told me.

Those with something to lose didn’t want to make the governor look bad by making the ACA look good

The question now became: In an insular state led by a governor committed to thwarting Obamacare, who was eager to embark on a mission to lead sign ups in Mississippi? It was a short list with a delicate calculus: Those with something to lose didn’t want to make the governor look bad by making the ACA look good.

The University of Mississippi Medical Center in Jackson, the state’s only academic medical center, raised its hand. Some 220 uninsured patients from around the state passed through the hospital’s doors every day making it the perfect place to catch potential customers. Financial counselors who already worked with the hospital’s uninsured patients would become certified as “navigators” to enroll Obamacare shoppers, and the hospital would set up a satellite office at the Jackson Medical Mall, a former shopping center repurposed to offer health services to the poor. Still, the decision to apply for a federal navigator grant was politically sensitive; the hospital sought Gov. Bryant’s blessing before moving forward.

Community groups in Jackson—some of whom were now competing for the same federal grants—were wary of UMMC’s strategy; they doubted the hospital could man the ground war necessary to span the state’s rural landscape.

But when the grants to lead signups in Mississippi were announced in August 2013, UMMC trounced the other contenders. Of the $1.1 million awarded to Mississippi, UMMC nabbed the biggest share—$832,000. The only other recipient—Oak Hill Baptist Church, a tiny black congregation in the town of Hernando, near the Tennessee border—was something of a mystery to Mississippi’s tight-knit health advocacy network, but its pastor, Michael Minor, and his wife, had been lauded at the White House for the church’s health ministry.

Roy Mitchell, named to Chaney’s advisory board as the lead member with “experience in enrollment,” had been passed over. Mitchell suspects the contracts went to the politically connected UMMC, the largest single recipient of Medicaid funds in Mississippi, and the charismatic pastor with ties to the White House. He feared neither would deliver. Even Commissioner Chaney weighed in, “Your navigator program is so horrible, you outta let me operate it for you,” Chaney told Cohen. “They wouldn’t let us do it.”

To Michael Minor, the strategy made perfect sense. Mississippi consistently ranked as the most religious state in the country, and as part of the National Baptist Convention, which played a vital role in black Mississippi life, Minor—and the White House—viewed the churches as key to getting the word out about the much-maligned new law.

UMMC and Oak Hill had just six weeks before open enrollment began, on Oct. 1, to train and certify their navigators, open call centers and drop-in locations, print publicity materials, schedule public events and deploy their plans with little more than $1 million.

Finite money for advertising and outreach and local political hostilities meant federal administrators focused, by necessity, on their “return on investment,” one longtime Republican health policy staffer in the Senate told me. “In states that decided, for political reasons, to oppose Obamacare, there was the sense, ‘So be it. Let ‘em go.’”

Meanwhile, Cover Mississippi, a coalition that had risen out of Chaney’s exchange wreckage, led by Roy Mitchell, was penniless. Enroll America, a nonprofit group that had formed to connect uninsured people with enrollment help, had decided not to send its vast door-knocking army of volunteers. It would concentrate instead on the more populous states of Florida and Texas. Public awareness was dismal; uninsured Mississippians were either indifferent or hostile.

“THE HEADQUARTERS”

Sister Minnie Wilkinson was no crusader.

Her pastor, Michael Minor, had received some small acclaim when he banned fried chicken at Oak Hill church in an effort to help parishioners lose weight. The fried chicken ban was all right with Wilkinson who didn’t mind the turkey sausage replacement and regularly attended Weight Watchers, but the ban on soda at church functions was tough to abide. She loved, absolutely loved, Dr. Pepper.

On the evening Pastor Minor learned the church had received one of just two grants to lead Obamacare sign-ups in Mississippi, he made an announcement during a service: “‘This is the headquarters!’ and we’d be working here five days a week,” Wilkinson told me, sitting at a cluttered desk in the church office in Hernando. Wilkinson, 67, had no particular expertise in health care or passion for the uninsured; she was on Medicare and before that survived a few years without health coverage just fine. Her pastor needed her, though, and that was enough.

The enormity of the task soon became apparent when she saw the exam required by the federal government to become a navigator. “You can’t make me believe that’s a 20-hour test,” said Wilkinson who doesn’t have a college degree. She told her husband, “I’m getting too old for this.”

Meanwhile, up in Washington, D.C., federal bureaucrats who had inherited the job of putting together an insurance marketplace in Mississippi were scrambling. There was a new worry. In the wake of Chaney’s defeat, Mississippi’s dominant insurer, Blue Cross Blue Shield, had pulled out, leaving only Magnolia Health Plan and Humana. And since the companies could choose where they wanted to operate, in 36 of Mississippi’s 82 counties, not a single plan was for sale.

Federal regulators asked Chaney for help to get more counties covered, and though he was still furious about being spurned, he agreed to reach out to Blue Cross and United HealthCare. Both turned him down. Humana said it would consider his request to take just five more counties. A few weeks later, Heidi Margulis, Humana’s senior vice president of public affairs, called Chaney with miraculous news. He remembers her saying, “’Well, Commissioner, we gonna make your day. You ready? We gonna cover all the counties.’ I said, ‘Heidi Margulis, I don’t know you. I don’t know what you look like. But if I could crawl through this phone, I’d kiss you.’”

STAGGERING HURDLES

When the federal website, HealthCare.gov, made its disastrous debut on Oct. 1, just four counties had two insurers competing for business; the rest had only a single choice. Federal regulators, Chaney told me, were lenient in approving the networks in order to give residents options. Customers chafed at the restrictions: “We didn’t have a great product this year,” said Conner Reeves at UMMC. In some counties, the local hospital wasn’t in network and patients had to go elsewhere. “People were not very happy,” Reeves told me.

From left, Kristian Weatherspoon, Jarvis Dortsch and Roy Mitchell of the Mississippi Health Advocacy Program. The group was passed over for a navigator grant despite being a key player in the now-defunct state exchange. (Photo by Jon Lowenstein)

Misconceptions plagued the effort early on, and those trying to sign up Mississippi’s uninsured faced a staggering number of hurdles. Many people didn’t understand how insurance worked, Jerrilyn Frazier, a UMMC navigator, told me. “They say, ‘I’m only gonna have to pay $35?’ and I tell them, ‘No, that’s after you meet your deductible,’” Frazier recalled. “And they’re like, ‘Well I only go [to the doctor] once. I’m not gonna meet a $500 deductible so what’s the use of me having it?’”

Enrollment site counselors around the state told me many Mississippians thought “affordable” meant “free.” At $403 a month, the Magnolia State had the third highest average premium in the country for ACA plans, although 94 percent of shoppers who enrolled eventually received a subsidy. Still, for many, bargain basement prices weren’t cheap enough. After a lengthy and involved phone consultations, UMMC navigator Tineciaa Harris would tell shoppers their monthly premiums were $2, or even 57 cents.

“And they’d say, ‘Well, I gotta think about it,” Harris said. “A lot of people also feel like, well, it’s 57 cents, it’s $5, but I can still go to the emergency room.” Harris tried to explain why that wasn’t a good idea. “The first time it happened, I turned to Conner, ‘Did they just turn down a plan? For 57 cents?’”

In an ominous display of territorial tensions, the fragile alliance of Obamacare groups couldn’t even agree on a website to promote enrollment events. At the request of federal regulators, Roy Mitchell convened UMMC, Oak Hill, and the Cover Mississippi coalition which included Humana, American Cancer Society, Planned Parenthood and others for a series of planning meetings. (Magnolia Health Plan did not participate.) The two navigator recipients opted not to use the “Cover Mississippi” logo and website in their campaigns, and Pastor Minor unveiled his own rudimentary site, getcoveredms.org. The hospital association promoted a different site, covermississippi.org. “The groups in Mississippi found reasons not to work together,” Tony Garr, regional manager for Enroll America, told me.

If there was one company that seemed to earn everyone’s praise, it was Humana. The insurance company eagerly joined the Cover Mississippi coalition; it trained brokers and sales staff at its branded, retail outlets; and two buses—rigged with Wi-Fi and private cubicles—traversed the state, making hundreds of stops at Walmart parking lots, gas stations and Sunday church services. “Having a mobile outreach was a way to gain quick visibility and build our brand,” said Humana’s Stacey Carter. Although the state’s final sign-up tally was meager, Humana’s aggressive strategy would pay off: Of the 61,000 Mississippians who signed up for coverage, some 40,000 picked Humana.

A DEVASTATING BLOW

The most churched stretch of land in the nation might just be the country road in northwestern Mississippi between Hernando’s city hall and the town of Coldwater. Small chapels are spaced every few hundred yards, it seems—modest buildings set amid the trees, some with bulletin boards offering plucky encouragement from the Almighty. Mississippi’s churches reflect the state’s small town living and racial partitions; locals worship in their own communities and those communities remain segregated. The National Baptist churches here are, in practice, all black; the Southern Baptists all white.

Minnie Wilkinson had told me to be on the lookout for a gas station so I wouldn’t miss the turnoff to Oak Hill. Pastor Minor was away, and Wilkinson had agreed to show me the tiny church entrusted with President Obama’s most prized domestic legacy. A brick bunker designed to withstand the brutal heat, the church’s only adornments were a wooden steeple and white cross. Next door, a neighbor had posted a hand painted sign that read: “Reward for identity of chicken coop thieves.”

Wilkinson apologized for the stifling temperature inside the church; someone had accidentally taken off with the keys to the room which housed the air conditioner, and she fanned herself while we talked. The telephone on her desk continues to ring with Obamacare questions from all over the state and referrals from federal operators.

During open enrollment, it had been a struggle to answer calls and tend to the steady flow of insurance seekers. “I would be here by myself and have 5 or 6 people waiting,” she recounted. The people who came into the church had all sorts of health problems and were often desperate for help. “A wife came in. She had some type of cancer.” There was nothing Wilkinson could do. The family’s income was below the federal poverty limit, making them ineligible for subsidized private insurance on the exchange, and, since Mississippi wasn’t expanding Medicaid, they didn’t qualify for public insurance either.

The woman’s husband returned to the church four or five times hoping to get a different answer. She dutifully referred people who landed in what became known as the “Medicaid gap” to a community clinic where they could pay a sliding-scale fee to see a doctor, but the clinics aren’t equipped to treat cancer and other serious maladies, and Wilkinson knew full well Obamacare couldn’t help them.

“It was so many people,” Wilkinson said. “It was heartbreaking for us and for them.”

Throughout the fall, during weekly conference calls, Minor told me church counselors in the Delta would be in tears: “They would have talked to 10 people in a row and not one could sign up.”

“It was so many people,” Wilkinson said. “It was heartbreaking for us and for them.”

People felt deceived: “They were under the impression that the less money you made, you get insurance for free,” Wilkinson told me in the church office, still fanning herself. It was a rumor I heard repeated around the state. Those on the front lines were startled by the Medicaid gap’s devastating blow. It killed momentum and word spread quickly: This Obamacare is a waste of time, and Obama was to blame.Bryant’s decision not to open up Medicaid bedeviled the enrollment effort everywhere: At 37 percent, Mississippi had the highest percentage of uninsured adults—some 138,000— who would have been eligible for public insurance under the ACA’s more generous rules. Mississippi wasn’t alone: Across the Deep South, the Medicaid gap was proving to be insurmountable. Of the 4.8 million uninsured adults locked out of Obamacare plans and Medicaid, 80 percent live in the South, and they are disproportionately black.For the health’s law liberal architects who envisioned a compulsory Medicaid expansion and generous government subsidies that would ease the nation’s uninsurance problem, the Medicaid gap was a cruel and unexpected outcome. “When we were designing the legislation, we were very aware that the states that, in many cases, benefitted the most were poor and generally anti-Obama,” Bob Kocher, special assistant to President Obama for health care and economic policy from 2009 to 2010, told me.  After the Supreme Court’s ruling, “you needed a state to cooperate at a minimum level for this to work,” he added.

In Mississippi, the nation’s safety net program for the poor was already a vital source of care and, to conservatives, a fiscal stranglehold that threatened the state’s solvency. One in four Mississippians carried Medicaid cards—some 640,000 mostly children, mothers and disabled people, costing state coffers nearly $900 million a year. Bryant argued the state could not sustain more beneficiaries without increasing taxes or cutting public safety or education programs. “I would rather pay extra to Blue Cross [to help cover uncompensated costs for the uninsured],” he said at the time, “than have to raise taxes to pay for additional Medicaid recipients.”

In an alternate reality, in which the Magnolia State moved ahead with the expansion, one in three Mississippians would receive public insurance. That was a deeply troubling scenario to conservatives waging a war against government largesse and interference: “Government assistance is an impediment to the ability of the individual to act for himself,” Laura VanOverschelde, the state’s Tea Party chairman, told me in September. “Our constitution was written for a virtuous and religious society, and we have been failing to do that by not allowing people to make their own decisions, rather than falling back on government assistance.”

Even heady economic analyses couldn’t overcome ideological opposition: A state economist projected the Medicaid expansion would bring Mississippi $1.2 billion in federal funding and 9,000 new jobs at a cost to the state of $159 million by 2025.  Bryant has long held that taxpayer money doesn’t come free. “If Mississippi had expanded its already massive Medicaid program,” he told me, “the state would have spent between $12.4 billion and $12.8 billion between 2014 and 2020 on the Medicaid program. Those are state dollars, not federal dollars. There is no way Mississippi could shoulder that burden.”

To liberal observers, however, there were racial undercurrents at work. Images of “welfare queens”—black, Delta women in Cadillacs—still held potency for conservative whites in Mississippi, and as recently as 2011, then-Gov. Barbour refreshed the image with a snazzier car. “We have people pull up at the pharmacy window in a BMW and say they can’t afford their co-payment,” he told the Washington Post. In reality, nearly all the adult Mississippians in the Medicaid gap are employed, albeit not at jobs with health insurance, and a significant number—some 50,000—of them are white.

Republicans weren’t without a plan to confront the state’s growing uninsured. Bryant offered in an opinion column “real solutions to improving health care” that didn’t rely on Medicaid. “Each of us must assume personal responsibility for our own health and our own choices,” Bryant wrote. But “at the core is job creation,” he said of his plan to reverse health insurance losses, and he urged lawmakers to work with him “to create an environment where businesses flourish so Mississippians can secure sound employment and fund their own health insurance.” Bryant’s spokesman told me that the governor believed “sound employment” is “the best, most sustainable way for the state and its residents to thrive.”

Jasmin Harrison, 23, tried to sign up for exchange coverage, but instead found out she is in the Medicaid gap. (Photo by Jon Lowenstein)

Sound employment had been eluding Jasmin Harrison, an achingly polite uninsured 23 year-old who lives in the small town of Raymond, west of Jackson. With a new diploma in dental assisting, Harrison told me she was frustrated when potential employers didn’t return her calls. “The employer should tell the lady why they didn’t get the position. Don’t just get somebody waitin’ by the phone,” she said. Up until last year, Harrison worked as a nurse’s assistant, but after a driver rear-ended her, she developed debilitating pain and couldn’t keep up her shifts. She lost her job, and her health insurance, and figures she has about $40,000 in medical bills.

The community clinic Harrison went to in Jackson didn’t have the orthopedic and pain specialists she needed, so when her aunt called and told her “they were signin’ people up [for Obamacare] at Metro Center Mall,” Harrison hurried over. “I had confidence that I was gonna receive health care that day, that I could go see the specialist,” she said. Instead, a counselor told her that because she had no income, she wasn’t eligible. “I said, ‘What’s the point of comin’ here?’” The Medicaid office had already told her that she needed to be pregnant or have children to enroll.

To Harrison, it seemed un-Christian. “You should want to help another person that’s in need.”

By December 2013, the scope of Mississippi’s disaster had become clear: a grand total 802 people had signed up for Obamacare. Healthcare.gov’s epic technical problems were partly responsible. But fear of getting on the governor’s bad side—and drawing attention from conservative activists—also seemed to be a remarkably effective way to quash the health law. The state’s hospital association, for instance, which Bryant had scolded for “pushing talking points designed to create panic,” had backed off its calls to enlarge the public insurance program, and business owners who had allowed navigators into their shops now said they could only go so far.

Anti-Obamacare zealotry, enflamed by conservative talk radio, pervaded civic life. Some white Mississippians came to view signing up for health insurance as a political act. One summer night, I met a young waiter-in-training at an upscale restaurant in Jackson who was showing off a bandaged finger; it had been badly broken, turned sideways, he said, during a flag football game. He told me he didn’t have insurance and had paid a doctor precious cash to set it. The following night, I went back to the same restaurant, and he came to take my order. Why hadn’t he signed up for health insurance? I asked.

“No ma’am,” he answered. “I’m just not political like that.”

PATCHWORK SOLUTIONS

The white sand and salty air of the Mississippi Gulf Coast are far removed from the kudzu draped trees surrounding Oak Hill Baptist Church hundreds of miles away near the Tennessee border. Yet, a few months into open enrollment, necessity forced the ground to close.

Gulf Coast community advocates were feeling overlooked and complained that there were no permanent navigators in two of the state’s largest cities—Biloxi and Gulfport. Rev. Alice Graham, executive director of Gulfport-based Interfaith Partnerships, a religious group eager to aid the uninsured, told me the university hospital UMMC, in particular, had rebuffed her efforts at local partnerships and seemed not to understand the Coast’s diverse population and need for translated materials. With its Latino service workers and Vietnamese shrimpers (men fishing; women peeling), the Gulf Coast is Mississippi’s most heterogeneous region.

Although Roy Mitchell’s outfit in Jackson, Mississippi Health Advocacy Program, had been passed over by federal grant makers, his team and Oak Hill came up with a patchwork solution: Minor would let community organizers across the state, including Graham, use his federal grant authority to become certified navigators. As a result, the number of counselors working under the auspices of tiny Oak Hill jumped to 60 by November, including a handful along the Gulf Coast. The workaround gave Graham boots on the ground. Mitchell’s group scrounged up $15,000 to help her pay Hispanic and Vietnamese navigators a small stipend, and her team of six set about their work in Gulfport.

Meanwhile, in nearby Biloxi, community health centers, which offered basic medical care to the uninsured, were seeking out patients who could qualify for Obamacare plans. The Coastal Family Health Center, a modern and spacious low-cost clinic, sits along a desolate patch of Main Street where a sign at Nance Temple Church of God in Christ preaches: “Think it’s hot now. Don’t miss heaven and go to hell!”

Because clinics like Coastal Family Health Center were trusted faces in low-income communities, federal administrators saw them as vital partners in the enrollment campaign. A quirk in the health law had severely limited funds for official navigator grants in states that relied on healthcare.gov, like Mississippi, but federal agencies were free to direct $150 million to the nation’s 1,100 community health centers. Mississippi’s clinics received $2.5 million—twice that awarded to UMMC and Oak Hill.

Danielle Davis-Polk, who led Coastal’s signup campaign, and her five-person team staged healthy cooking events and streetside fairs to drum up insurance shoppers. But their efforts along the shoreline ran into familiar troubles: Local employers didn’t want anything to do with Obamacare.

“They don’t want to talk to us,” Davis-Polk told me in her office in Biloxi as apocalyptic-looking storm clouds gathered outside her window. Employees would “sometimes say, ‘Well, can you come back and talk to us when the owners are not here?’’’ A hospital housekeeping service refused to talk to her staff, Davis-Polk said, as did the Beau Rivage casino, which had recently reduced some workers’ hours to part-time and dropped those workers’ health coverage. Davis-Polk chose not to attribute the pushback to politics, and instead hoped it was simply a matter of educating people about the health law. Still, she struggles to understand how to reach resistant employers. “What that conversation sounds like to even get them to listen, I don’t know,” she said. “We’ve had people tell us, ‘No, don’t leave flyers. We’re not interested.’ And I just don’t understand that.” It was not lost on her that those uninsured employees occasionally ended up at the emergency room or Coastal’s clinics.

Black pastors proved more receptive to both Davis-Polk’s and Rev. Graham’s overtures, but converting the pulpit’s enthusiasm into actual customers was difficult. (White-dominated Southern Baptist churches generally oppose the ACA.) The black churches were supposed to deliver Obamacare customers in droves, but the state’s dismal signups suggested otherwise. At Graham’s own United Methodist church, parishioners would promise to attend a signup event. “‘Oh yeah, Dr. Graham! We’re gonna come!’” she recalled them telling her. “And then they don’t come.” The same happened when she handed out fliers and staged events at neighboring African-American churches. “You have to be willing to be disappointed and still go back and still do the work,” says Graham.

“You have to be willing to be disappointed and still go back and still do the work.” Rev. Alice Graham.

Graham attributed black residents’ reluctance to a wariness of government interest in their plight. At 68, she had lived through painful years prior to, and after, the civil rights movement, and the president’s own black heritage didn’t mollify the distrust. “African Americans in this area have had so many experiences where the government has let them down. To say the government is going to do something? Is going to protect them?” Graham’s voiced slipped into an exaggerated dialect. “Really? We been black a l-o-n-g time.”

Just as devastating floods and hurricanes had shaped Mississippi’s terrain, generations of living at the bottom of the heap begot apathy and resignation in Mississippi’s poor—black and white. To hell with committees and outreach strategy; when it comes right down to it, Graham says, the predominant view among the poor is: “Mississippi dun’t care about its poor people.” She was wary of wading into politics—she runs a non-partisan group that relies primarily on private dollars—but the message trumpeted by the state’s white Republican politicians was clear to her. “If you’re poor, you deserve to be ’cause if God really loved you, you’d have money, you’d have access, you’d have resources,” Graham told me. “That’s Mississippi values.”

The poor had come to believe it themselves. “That’s just the way it is. You got to go to a hospital? You go, and you sit and wait in the emergency room. That’s what poor people do.”

‘A STATE-OF-THE-ART I.C.U.,’ SHUTTERED

Poor people often flocked to the emergency room at Montfort Jones Memorial Hospital in Kosciusko. The central Mississippi town is best known as Oprah Winfrey’s birthplace, but the distinction has done little to change the town’s fate. Unemployment in Attala County is far higher than the state average; nearly one in 10 adults is out of work, and Montfort Jones has added to those numbers of late.

Earlier this spring, the hospital shuttered its intensive care unit and laid off 38 employees. Next, the psychiatric unit for seniors closed. One in five people who come to the emergency room can’t pay their medical bills, and the hospital relied on supplemental Medicaid payments to defray the costs. But under the health law, federal aid for uncompensated care trails off on the assumption that hospitals should be able replace much of the lost income with newly insured Medicaid patients. Without them, and with no softening in the demand for uncompensated care, Montfort Jones has been losing $2 million to $3 million a year, and couldn’t meet payroll.

Dr. Tim Alford in his clinic in the central Mississippi town of Kosciusko. The hospital across the street has had to lay off staff and shutter its I.C.U. (Photo by Jon Lowenstein)

Tim Alford is a country physician who likes to say rural doctors in Mississippi practice “real medicine.” At Montfort’s emergency room, across the street from his family medicine practice in Kosciusko, he attends to stroke patients, heart attack victims and, the week I met him in June, an energetic 3-year-old boy who had somehow managed to bite a hole through his tongue. Montfort was one of the original hospitals built under the Hill-Burton Act, a post-World War II, government-financed hospital construction program that brought economic life to many of Mississippi’s rural byways. The hospital, along with its intensive care unit, was rebuilt just a few years ago into a modern, rural gem.

Alford led me down a darkened hallway and pushed open the doors to the ICU. It looked as if the nurses, doctors and janitors, after tidying up and making the beds with fresh linens, had just gotten up and left. Scanning the bay of ghostly patient rooms, Alford said mordantly, “This is a state-of-the-art ICU.” Now, patients with pneumonia, blood clots or infections that need monitoring are sent 70 miles away to Jackson. Nationally, two of the five hospital systems with the largest financial margin declines are located in Mississippi, and there has been a spate of closures and layoffs at rural hospitals in Mississippi in the last year alone.

During state budget negotiations in the fall of 2013, Gov. Bryant proposed giving the state’s struggling hospitals $4.4 million to offset their losses. The Mississippi Hospital Association’s new chief executive officer, Tim Moore, responded politely to the gesture, saying, “We appreciate the governor’s acknowledgment that hospitals are in need of financial help to recover from severe cuts to reimbursement on both federal and state levels,” Moore told the Associated Press last December. “Any restoration in funding to our state’s hospitals is truly appreciated.”

Democrats viewed the earmark as hush money. “I’ve asked the [hospital association] a number of times what they got in exchange for their deciding to become mute on this issue,” state Sen. Hob Bryan, the Democratic vice chairman of the health committee, told me. “They said they got a seat at the table. I said, ‘So, in other words, you sold your birthright. You didn’t even get a bowl of porridge. You just get to sit at the table and watch other people eat porridge?’”

The proposal left many economists and hospital experts scratching their heads: With its modest coffers, Mississippi couldn’t come close to making hospitals whole. They were facing eviscerating cuts in federal subsidies of $8.7 million in 2015 and 2016; $26 million in 2017; $72.3 million in 2018; $81 million in 2019, and $57.8 million in 2020, according to the Center for Mississippi Health Policy. Over breakfast one morning in Jackson, Ronnie Musgrove, a Democratic former governor told me, “It just defies logic.”

The indignity cut much deeper for Dr. Alford. Governor Bryant’s insistence that Mississippians in need of health care could head to an emergency room was, to Alford, an insult to rural doctors desperate to improve the health of their community, not serve as medics on a battlefield. It guaranteed the state would be locked in a failed system. “The emergency room is the wrong place, exactly the opposite place, that a lot of these people should be going,” Alford told me at his clinic across the street from the hospital in Kosciusko. “That is a shallow, irresponsible answer to the problem.” All those diabetes-related amputations, heart attacks and breast cancer deaths could be warded off or controlled with good primary care.

Now that he is sending most patients in need of intensive care all the way to Jackson, Alford said, “The silence from the state capitol is deafening.” Alford said. Obamacare wasn’t perfect, he acknowledged, but the law’s instinct to divert patients from high-cost settings to primary care was Mississippi’s best shot at moving out of last place. “If that’s where we’re content to leave it,” Alford said, “if this is the best we can do, then we’re in a peck of trouble.”

A PERSONAL TRIUMPH

The afternoon heat was closing in like quicksand in Jackson one day in June during my visit, and soon every molecule inside every living thing would become stuck to the next one. The only answer, of course, was to jump in a pool or eat a New Orleans-style snowball.

For 18 years, Jimmie Lewis, has been towing his cherry red snowball trailer behind his truck to the city’s public pools. He does a brisk business selling syrup-flavored shaved ice— sour apple, rainbow, strawberry daiquiri—as the summer temperatures soar. After the state hospital where he worked closed and he lost his job, Lewis attended an entrepreneurship class at Jackson State University. He used a student loan to buy his first trailer and then added two more. His eldest son and his cousin usually helped him out, but neither could work this summer. Jimmie, 44, advertises his business as “Christian Owned and Operated,” and spends six to seven days a week driving his food truck during warm months. “It’s like farming,” he told me. “You gotta get it when you can.”

Jimmie Lewis, 44, greets a friend in the neighborhood. Lewis pays about $33 per month for his ACA insurance. (Photo by Jon Lowenstein)

Despite the success of his business, Lewis could never afford health insurance and had gone without it since 1995. His body held up okay, though he went through a divorce and battled depression. What worried him most at the time was getting in an accident and not being able to provide for his three kids.

But earlier this year, Lewis saw a television news story about an Obamacare sign-up center and went down to enroll. The plan he picked came with dental insurance (that had been his true motivation—he needed a tooth pulled), and the whole package cost him about $33 per month.

It was a practical and financial fix, to be sure. “Before, man, you don’t have any choice,” Lewis told me. “You get sick and go the emergency room. Then you owin’ everyone around town if you couldn’t pay the bill.” But more than that, it was a personal triumph. When Lewis’ insurance card arrived in the mail, he felt like he had finally made it. “Oh, man, I could poke my chest out. I’m self-employed and insured. That’s something I hadn’t had, so I was really proud of it. I’m still proud of it.”

On the day I met him, Lewis pulled into the parking lot at a busy public pool in Jackson’s North End, an African-American neighborhood, and with the heat index at 100 degrees, a line quickly formed in front of his concession window. Khadijah Garrett, 20, and her friend Victoria Hughes, 20, ordered lemonade and strawberry snowballs. Neither had health insurance—Hughes had missed the deadline to sign up, and Garrett had just been too busy. “I’m working two jobs,” Garrett told me, her lemonade-flavored ice melting quickly. Monday through Friday, she was a janitor working for a cleaning service, and at night she waitressed at a barbecue restaurant. Her mother had signed up for Humana insurance through Obamacare. “She said it’s good. They’ll cover half of a $2,000 bill, and my neighbor, he pay 24 cents for Humana,” Garrett said. Why hadn’t she signed up then? “I was too busy. I don’t got the Internet around me.” Others here at the pool told me similar stories: Too busy working too many jobs to find the time.

I asked Garrett what she made of her governor’s plan to create jobs with health benefits that uninsured workers like her could move into. “No offense,” said, Garrett, who is black, “but we got a little racial issue here in Mississippi.” As if that explained everything to me, the pool’s only white visitor.

Jimmie Lewis, left, is one of the people who did manage to sign up for ACA insurance in Mississippi. He runs a small business selling snowballs—the New Orleans version of a shaved ice—in Jackson with the help of his son, Amun, 14, right. (Photo by Jon Lowenstein)

Many of Lewis’ friends and customers didn’t earn enough to buy insurance on the federal exchange as he did – they fell into the Medicaid gap. “I know guys who wash cars every day, and it’s hot,” he explained. “They fall down and have a stroke or somethin’, they don’t have any health insurance. And where’s the money gonna come from? His family is depending on him.” Lewis had followed the news about Bryant’s opposition to the Medicaid expansion. To him, it made sense that white conservatives wouldn’t want people like him—blacks—to have Medicaid; people in Mississippi have learned to deal with bigotry. But it surprised him that Republicans in the state were leaving white people in the Medicaid gap, too. “As long as you don’t step on my shoes, and I don’t step on yours, man, we can live and coincide,” he said. “But when you’re white and do that to other white people? Man, that’s mean-spirited.”

OBAMACARE 2.0

With the sophomore year of open enrollment for the health law quickly approaching, Mississippi remains hostile territory as Gov. Bryant continues to steadfastly oppose the law. “Prior to Obamacare, the individual insurance market was a more viable option for people who did not have access to group health insurance,” he said in a statement. “By design, the law gutted the market and replaced it with the heavily regulated, astronomically expensive but often heavily publicly subsidized individual policies.”

Bryant, and his tea party compatriots, continue to push “economic development” and “personal responsibility” as the appropriate remedies for Mississippi’s health care woes. When I asked VanOverschelde, the tea party chairwoman, if her group had more specific health policy proposals to move her state out of last place in the nation’s health rankings, she told me: “Our premise is: We believe in free markets, constitutionally limited government and fiscal responsibility. So given those, we’re not taking a position.” Her personal conviction, however, was that “people ought to be taking better care of themselves.”

Robert Martin, 73, waits to see Dr. Tim Alford at the family practice clinic across from Montfort Jones Memorial Hospital. (Photo by Jon Lowenstein)

The lengthy war over Obamacare has surprised even the most seasoned political appointees: “I’ve really never seen anything like this in my life,” Sebelius, the former health secretary, said at a conference in June. Those states that broadened Medicaid and encouraged residents to buy subsidized insurance are seeing sharp declines in their uninsured populations; that’s not the case in Mississippi. “I think over time we’ll see tangible differences from state to state in health outcomes,” Gary Cohen, the former CCIIO director, told me. Indeed, Massachusetts, health reform’s forerunner, has seen its death rate fall since its 2006 expansion of health insurance.

In Mississippi, the second year of Obamacare will look much like the first: Tens of thousands of poor working adults remain locked out of public insurance and government subsidies; the University Mississippi Medical Center and Oak Hill Baptist Church have again been selected to spearhead enrollment, with $1 million in federal grants; and the insurance offered to Mississippians, with its spotty networks and out-of-town hospitals, will remain essentially the same.

There is a sign, however, that at least one of the health law’s tenets—competition—has made it to Mississippi: United Healthcare intends to sell insurance on healthcare.gov in the state. Fourteen counties will have three companies competing to insure Mississippians and every county will have at least two choices.

Still, for the health advocates who have kept the law alive here, expectations are low. The Medicaid gap crippled enrollment efforts, so advocates have made expanded public insurance their top priority. The Cover Mississippi coalition is debuting an online video campaign called “Mississippi Left Me Out,” which features teary testimonials from uninsured residents. They hope lawmakers will be unable to turn away, although Republicans remain opposed to the ACA and firmly in control of the state legislature.

When I met him this summer, Roy Mitchell, of the Mississippi Health Advocacy Program, was decidedly pessimistic. “Ideology put a man on the moon,” he said. “Ideology can certainly kill health care.”

The organization that sponsors his group laid off hundreds of people in June, and he felt he was barely holding onto his job. “By the grace of God, I’m sitting here,” he said, wearing a worried look.

Optimism trades on innocence, a sense that anything is possible; here in Mississippi, where poverty and sickness seem affixed to the landscape and an ambisonic elegy hums overhead, the long odds are well-known. Mitchell wondered aloud whether he and others could press ahead with little money in a state feverish with anti-Obamacare hatred.

“Can we continue to do this?” Mitchell asked rhetorically. “No.”

Jeffrey Hess of Mississippi Public Broadcasting contributed to this story.