What’s missing from Medicaid coverage: actual people

The media's been all over consumer problems with the exchanges. For Medicaid, not so much

If a prize were given for the best story about Medicaid and the Affordable Care Act to date in 2014, it would go to The Atlantic for Olga Khazan’s “Living Poor and Uninsured in a Red State.”

Khazan’s piece, published in early January, explored the impact of the Supreme Court’s ruling that individual states could “opt out” of the Medicaid expansion envisioned by the ACA—an expansion that was originally designed to bring insurance to 15 million Americans. The “red state” in question is Texas, where Gov. Rick Perry is steadfastly opposed to expansion, calling it “a misguided, and ultimately doomed, attempt to mask the shortcomings of Obamacare.” Khazan’s article offers a look at the policy arguments for and against expansion. It quotes white papers and journal articles, cites statistics, embeds relevant maps and graphs.

And most importantly, it shares the experiences of a few of the roughly 1 million Texans who fall in the “Medicaid gap”—people who earn too much to qualify for the state’s existing program, but too little to get federal subsidies to shop in the new exchanges, because the ACA’s drafters expected them to enroll in the expanded Medicaid program. We meet MaGuadalupe, who has been putting off a $4,000 dental bill to help her son save for college, and Claudia, who nearly died of complications from gall-bladder surgery when she was reluctant to go to the hospital, fearing another bill. Then there’s Mark, who was able to start treatment for tongue cancer about a year after he first showed up at the ER with symptoms. Ideally, that process takes less than three months.

With Texas home to more than a fifth of the uninsured Americans in the “coverage gap,” and the volumes of media attention devoted to the Affordable Care Act since the fall, you might think that the state’s news outlets have been full of stories like these—especially in the first months of this year, with expanded coverage beginning Jan. 1 in some states.

That has not been the case. It’s not that the Medicaid expansion debate has been ignored. It’s that it’s been covered through the frame of institutions and arguments: budget analyses or advocacy campaigns or healthcare providers or op-eds by politicians. With a few exceptions, like this Dallas Morning News column, the actual experiences of low-income, uninsured Americans have been mostly absent.

But this isn’t only about Texas! Zoom out for the nationwide picture, and you can find some strong reporting that takes a deep look at the struggles faced by people stranded in the coverage gap, like this story from the Kansas Health Institute News Service, or this one from KSMU in Missouri, or this one from the Charleston Post and Courier. These aren’t advocacy pieces—the local resident profiled by the Post and Courier actually opposes Medicaid expansion—but they offer a much fuller picture of healthcare inequalities, and how little most politicians know about what it’s like to be poor in America.

Again, though, they’re the exception. More common is the sort of coverage that accompanied the debate over expansion in Virginia earlier this month: lots of editorials, reports on rallies and the political fight, and maybe some anecdotal leads about patient experiences that give way to typical stories. The coverage is responsible but formulaic. It’s also a little bloodless. Compare those Texas links above to this quote Khazan got from a medical student at a free clinic in Galveston, where Mark, the cancer patient, lives: “You are called upon to sit and listen to somebody’s story, and you look in their mouth and their teeth are messed up, and you listen to their heart and there’s a murmur, and you’re telling them there’s a treatment for this, but the state has decided they should not be able to get that treatment.”

This pattern is especially striking because the dominant press narrative on healthcare since last fall has focused intensely on the personal experiences of a different set of people—those who have been shopping for policies on the new insurance exchanges. Reporters have rushed to tell the stories of Americans who were thwarted by non-functioning websites, had their policies cancelled, and had to change providers. These victims had tales—sometimes exaggerated—that went viral and dominated the news cycle, but they can still get insurance. Those in the Medicaid gap can’t; their tales rarely make the local paper. (As for people who are able to sign up for Medicaid, they must navigate a bureaucracy that often rivals any Healthcare.gov headache. But for the most part, forget about media coverage of that.)

What explains the discrepancy? One factor may be that no one is supplying the press with ready-made anecdotes from people stuck in the Medicaid gap. President Obama and his allies are focused on cheerful messages about people benefiting from the law. (Families USA, one of Obamacare’s most vocal cheerleaders, didn’t respond to an inquiry about whether it’s collecting coverage-gap stories for its anecdote bank.) And these stories obviously aren’t pushed by Republican sources, since it’s mostly GOP governors and state legislators in the South and Midwest who have led the fight against expansion.

For reporters doing the legwork to find sources on their own, the middle- and upper-middle class people struggling with the exchanges may simply be more likely to bring their complaints to the press. When CJR reached out to journalists and others about this issue earlier this year, a Tampa Bay Times health reporter described frustrated consumers calling her after they couldn’t get through to the 800 number for the exchange. But an advocate for low-income households in South Carolina said it was tough to get people in the coverage gap to make time to be interviewed—talking to reporters wasn’t their top priority. They’ve got other things to worry about.

Reporters also raised many of the points you’d expect would shape coverage decisions: limited time or resources, lots of other ACA stories to chase. Then there’s the question of how we’re trained to think about news. As Jodie Tillman, that Tampa Bay Times reporter, said, “the exchange stories are about something happening: someone being shut out of the glitchy website or losing a plan he liked.” The Medicaid story “is what’s NOT happening; these are typically uninsured poor people who haven’t been able to afford coverage—and still can’t.”

And then there’s this observation from a reporter at the Dayton Daily News: “the struggles of the mainly poor, minority communities that we’re talking about when we’re talking about Medicaid expansion have historically gone underreported because most media outlets don’t think they’ll resonate with their mainstream readers.” Not every reporter we reached out to saw signs of race or class bias in coverage decisions, and several pushed back on the idea. But it may play a role here. People in the coverage gap are by definition lower-income, and in many states, especially in the South, most are non-white. (In Texas, roughly three-quarters of the uninsured adults in the coverage gap are people of color, according to the Kaiser Family Foundation. This New York Times piece from last fall also offers good background.)

I rang up Ian Haney Lopez, a law professor at the University of California, Berkeley, and the author of a new book, Dog Whistle Politics, that explores coded racial appeals. In addition to reporting on the lives of people outside the “mainstream,” journalists need to understand—and write about—how race issues play into the politics of Medicaid, he said, but “I don’t think most reporters accept that.” That means that when politicians get concerned about “waste” in healthcare spending, or talk about how uninsured people can go to the emergency room, reporters need to parse these quotes, and yes, get into some uncomfortable stuff explaining what’s at stake.

When CJR reached out to health journalists around the country earlier this year, we got a lot of thoughtful responses. Many agreed that the personal experiences of Medicaid patients—or people shut out because their state didn’t expand—had gotten short shrift compared to the complaints of more affluent people. And many said they would try to do more reporting in this vein, or expected it would balance out in time.

Whatever the reason for the discrepancy, from our perspective, that hasn’t really happened yet. Khazan’s article was published two and a half months ago, and it still stands out for depth of detail and its commitment to showing what’s at stake. It’s time for some other coverage to take a run at that prize.

And here’s another story idea: Being on Medicaid is no picnic. Even once you’re on the program, it’s hard to find specialists and dentists who will treat those with Medicaid cards. And as a recent study in Health Affairs showed, once you get enrolled in Medicaid, it’s not necessarily easy to stay enrolled in Medicaid. Think about how upset people get about losing access to a doctor because of “narrow networks,” and then think about what happens when you’re bouncing in and out of a government insurance program. There’s an article about what that experience is like that I’d like to read.

Corey Hutchins, Anna Clark, Deron Lee, Susannah Nesmith, and Aparna Alluri contributed research and reporting for this story.

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Trudy Lieberman is a longtime contributing editor to the Columbia Journalism Review. She is the lead writer for The Second Opinion, CJR's healthcare desk, which is part of our United States Project on the coverage of politics and policy. She also blogs for Health News Review. Follow her on Twitter @Trudy_Lieberman. Tags: , , ,