Life in Obamacare’s Dead Zone

In the Riverview Gardens apartment complex, roused by the sounds of her neighbors waking, Janet Foy stepped over the anatomy-and-physiology textbook she fell asleep reading and vowed to herself that today would be the day she finally came back to life. That today she could start reclaiming some of the confidence she once felt when she stood onstage at church and sang about forgiveness and redemption and You who make all things new. At 56, Foy was broke, jobless and living with her older sister in public housing in Kansas City, Mo., and she didn’t feel much like singing anymore.

Recently, she had been told by a manager at a Victoria’s Secret that there was no need to leave her résumé. But not too long ago, she wanted me to know, she was pulling in $1,000 a week at a Merle Norman makeup store, helping other people look and feel their best. But then she took in her brother to try to help him overcome an addiction, and soon she was pulled under financially as he spiraled out of control. She would show up to work too overwhelmed and exhausted to make any sales, and had to dip into her savings until that was gone. She begged to borrow against her next paycheck but eventually lost her apartment and moved into a friend’s spare room.

How are you holding up? people would ask. I’m good, girl, she would say. Praise the Lord! But inside, she felt like the sci-fi movies she had seen in which “a person becomes encapsulated,” suspended between consciousness and oblivion.

Finally, on the phone with her sister one night, she broke down: I’m not right, I feel like I am dying.

“She was always the steady one,” her sister, Karen Smith Walker, says. “The one who could solve any problem. Always with a book. Always studying.” But now, after years of living with this desperation, Foy didn’t know how to find her way through it anymore.

“I tried to get Obamacare,” Foy recalls. “I called the number, and when the woman told me what it would cost me, I just about dropped the phone. She told me I’d needed to make at least $12,000 a year for there to be any help to make it something I might be able to afford. Which still doesn’t make a lot of sense to me, even now, that having no money meant I got no help when I really needed it.”

She also learned that she could not expect any help from Medicaid, which in her home state remained available only if you fit the criteria sometimes known by the shorthand “poor and” — poor and pregnant, poor and disabled. As a single childless woman, she could forget about it. There was no going to a doctor, even if she felt, as she put it, “like I was falling to pieces inside.”

But then one day she found herself sobbing in front of a nurse and a social worker, members of a team dispatched by the local safety-net clinic to embed themselves in the lives of the uninsured residents of the apartment complex where Foy lived — a grass-roots, door-to-door, last-ditch effort to reach those who would otherwise, as one resident delicately put it, “remain S.O.L.” The team, part of a program called Community-Centered Care, or C3, developed by the Samuel U. Rodgers Clinic of Kansas City in partnership with the Housing Authority of Kansas City and the Truman Medical Center, used their collective expertise to help the uninsured come up with creative interventions for their health concerns, beyond relying on a regimen of studious neglect supplemented with panicked, bankrupting visits to the E.R. Some days that meant knocking on apartment doors and offering on-the-spot blood-pressure readings. Other days it meant arranging for guest speakers to come and lead on-site classes about reducing stress or cooking nutritiously with limited ingredients.

In Foy’s case, it meant a referral to a therapist, who promptly gave her an explanation for her suffering. “My neurotransmitters were going pphhht,” she told me. “They were just shot, after all that loss and trauma I had been through.” The therapist treated Foy for depression — at no cost. That was a benefit for residents who worked with the C3 team: They received three free visits to the nearby Sam Rodgers Health Center, which they could use for any treatments offered there, including dental work. After her first session with the therapist, Foy started to imagine what it might be like to feel normal again. But after her third visit, sessions would cost $35; modest, she knew, but still more than she could afford. Over the last few years, she learned there was more than one kind of death, like the inability to lift yourself out of a bad place. Now that she had begun to do just that, she dreaded the possibility of losing it all over again.

Editors’ Picks

• The Quick Sauce That Changed How I Cook

• At Ralph Lauren and Coach, the American Dream Is a Puzzle

• ‘Coyote vs. Acme’ Kicks Up the Dust of a Classic Debate

According to the most recent census data, the uninsured portion of the United States population has fallen to 9 percent, with the sharpest drop registered among those living in households with incomes of less than 200 percent of the federal poverty level (which, translated into dollar terms, is the equivalent of an income of $48,600 a year for a family of four, or $23,760 for a single person). According to the Kaiser Family Foundation, more than 11 million people have purchased private health insurance plans through the Affordable Care Act exchanges, and a majority report incomes between 100 percent and 250 percent of the federal poverty level. It would seem that lower-income Americans are among the greatest beneficiaries of the A.C.A.’s reforms. And yet in some states this same population also remains, paradoxically, among the reforms’ greatest losers. This subpopulation is living inside a kind of “dead zone,” as Foy put it to me one day, searching for the right metaphor to describe her predicament. A long and suspended silence, she called it, “like when you can’t receive a single call, a single text.”

How these dead zones formed is a matter of unanticipated consequences. The A.C.A.’s architects did not predict that the Supreme Court would rule in 2012 that it was up to each state whether to expand Medicaid eligibility, which is how they imagined Americans with the most modest incomes would receive coverage. Even though the federal government would have helped fund the expansion, 19 states opted for ideological reasons not to do so, arguing that they are pushing back against government bloat and the fostering of dependency. A result was that the residents with the lowest incomes in those 19 states were now caught between two nonoptions: They made too much to qualify for Medicaid, or didn’t qualify at all, but they also made too little for publicly subsidized insurance on the exchanges, their income not high enough to trigger the refundable tax credits and cost-sharing that could make the possibility remotely affordable to someone making just a few dollars above the federal poverty level.

This paradox is referred to widely as the coverage gap. Most people in that gap are on the far side of middle age, with about one in eight edging toward 65 — a time in life when more serious health issues begin to emerge. Almost half are nonwhite. They are almost equally split along gender lines. About a quarter are supporting children, and everyone in the gap is more likely to be working (62 percent) than not (38 percent). Those with jobs work largely for small businesses that employ fewer than 50 people, which aren’t subject to A.C.A. penalties for not offering employer-based coverage. Most people in the gap who have jobs work full time. They are agricultural workers, primarily, or service-industry employees, but some hold jobs in education, health and social services, professional administration or manufacturing.

There is little disagreement in the existing literature about the negative effects of being uninsured: You are more likely to receive a diagnosis of late-stage cancer; you are more likely to postpone or forgo care, resulting in more severe consequences as treatable illnesses become increasingly complicated with delay. There’s also good, hard evidence from large-scale studies on “the wear and tear that worry and stress has on people who don’t have insurance coverage,” says Genevieve Kenney, co-director of the Health Policy Center at the Urban Institute, noting one of the most compelling and most cited: a study in Oregon that found that offering Medicaid to the uninsured reduced bad medical debts, decreased the likelihood of choosing to cover medical expenses over other bills, buffered them from catastrophic out-of-pocket payments and significantly reduced depression.

And yet the coverage gap is a new enough phenomenon that scant on-the-ground research exists into the particular and distinct ways that it is playing out in people’s day-to-day lives. Already, a scattering of researchers, mostly medical anthropologists, have taken steps to follow communities where significant numbers of people are caught in the coverage gap, in order to gain the kinds of insights “you don’t get from a single snapshot, a one-off survey,” says Heide Castañeda, an associate professor in the anthropology department at the University of South Florida. Those insights reveal, as she puts it, “not just how vulnerable people are, but how much agency they have, how much initiative they have to try and find a solution when none seems to exist. You can’t code that in a binary way; you have to watch it unfold over time.”

In Castañeda’s case, she has been studying the lives of the uninsured in Hidalgo County, Tex., which has one of the highest rates of uninsurance in the nation. She has traced the health of dozens of families over the last four years, simultaneous to the rollout of the A.C.A., documenting how they have responded to illness or chronic disease or accident. What she has seen is that to live in the gap demands a creative, improvisational mode of survival — one that often masks the true extent of the disparities to anyone on the outside. “It might be true no one is dying in the streets,” she says. “But the uninsured are dying younger; people’s life expectancy is affected, people’s ability to work is affected. These informal types of health care, as important as they are, actually help us not to see that.”

If it can be said that life in the gap tends to inculcate a certain guerrilla thinking among those who have no choice but to consider highly improvisational modes of insurance, then it can also be said that treating the people marooned there requires a similar flexibility of thought. You must manage the strange simultaneity of making someone aware of a grim diagnosis, even as you also know you do not have the means to properly remedy it.

My curiosity about this mind-set is what had brought me to Kansas City, and would ultimately draw me into the state of Kansas, covering more than 1,000 miles in five days. The area had already established something of a reputation in medical and health-policy circles, even before the emergence of the gap, for the innovative ways its providers had adapted to the overwhelming demands of treating the uninsured and medically isolated. Kansas City was, until recently, home to the largest free clinic in the country (before the clinic’s board voted to accept insurance in anticipation of the A.C.A. and the expansion of Medicaid in its state, which then did not happen). And it is currently the home of the Health Care Foundation of Greater Kansas City, which gives away $20 million each year to help fund organizations looking for alternative ways to reach the uninsured and to expand community access to quality medical care — the same foundation that supported the efforts of the team embedded at the local housing project where Janet Foy lived.

The president and chief executive of the foundation is a primary-care physician named Bridget McCandless, who for 13 years before taking her current position headed a Kansas City-area free clinic. She is widely considered a thoughtful and measured voice in larger conversations about community health, having served as president of the Metropolitan Medical Society of Greater Kansas City and serving currently as a citizen representative on a Missouri House of Representatives working group devoted to Medicaid reform. McCandless seemed the perfect person to speak to about any unlikely innovations that had emerged to work around the lack of immediate legislative solutions for those in the gap.