Voices from the Last Days of Obamacare: A Reading List

Photo: AP Images

Repeal and replace: Republican candidates used these three words throughout the election cycle almost as an incantation. There was no other option for dealing with Public Enemy #1: Obamacare. When President Trump took office they became a battle cry for Republicans intent on undoing his predecessor’s signature legislation.

But what would repeal and replace look like? Last week, the House Republicans unveiled draft legislation to replace the Affordable Care Act, seven years in the making. The American Health Care Act shares part of the old plan’s name, but not many of its current features. Everything from the insurance mandate to Medicaid expansion is missing from the new plan, and leaders from both sides are unhappy with the half-baked results.

The Affordable Care Act was one of the most divisive pieces of legislation in modern memory, but it also changed the face of American healthcare. Uninsured rates are down in every state—even states that rejected funding for Medicaid expansion. And though the legislation didn’t live up to all of its lofty promises, there’s no denying that more people have access to preventative care and basic health services than before. The Republican plan would reverse many of those gains, and the burden would fall on those already burdened: the rural, poor voters who trusted in Trump.

The story of the Affordable Care Act goes beyond statistics or slogans. Journalists have had an uphill battle actually describing its particulars—stories that might not agree with the Commander-in-Chief’s complaint that “nobody knew health care could be so complicated.” One of the best ways to assess the ACA’s impact on real people is to hear from people who have experienced its costs and its benefits—and in the last year, several powerful pieces did just that.

1. “I Work in the Restaurant Industry. Obamacare Saved My Family’s Life.” by Allison Robicelli (Eater, January 2017)

Robicelli draws from a career in the food service industry to illustrate what’s at stake if the ACA goes away. Robicelli, a stage IV cancer survivor and baker owner, uses her own brush with death to show how repeal could affect the hospitality industry, a sector known for low pay and a lifestyle that can be brutal on the body. “Most people working in the restaurant industry have at best a casual relationship with health insurance,” she writes. But Obamacare changed that:

Before the Affordable Care Act was enacted in 2009, I spent a few years unable to see my doctors. Cancer is a hell of a preexisting condition—insurers aren’t particularly keen on bringing on new customers who are already cancer patients, and those who were willing to offer me coverage offset the inconvenience of my cancer with premiums of a few thousand a month, deductibles in the tens of thousands. Thanks to Obamacare, which meant my preexisting conditions were no longer allowed to be held against me, I was able to afford coverage that got me tests, scans, biopsies — the whole fun-time package I had missed so much. There were plenty of things to be scared of, but that fear of being left out in the cold to die so insurers could please their investors was finally gone.

2. “The Faces of Obamacare,” by Michael Hall (Texas Monthly, March 2017)

Hall follows the dramatic and quiet healthcare sagas of Texans in a bid to show how access to healthcare affects real lives. San Antonio becomes a microcosm of America’s relationship with the ACA—an urban showcase of what happens when a large group of uninsured citizens can suddenly afford things like insulin pumps and critical surgeries.

Hernandez still has bad days. Some mornings she can’t even get out of bed, and like others with ACA insurance, she has to wrestle with the company that is providing it. But having health insurance has profoundly changed her life, and there are many people in San Antonio like her. Perhaps no major urban area in the country showcases the ACA’s promise and its flaws better than San Antonio, a city with a high rate of uninsured citizens—the very problem Obamacare was designed to address. Enrolling them into the ACA has not been a simple task, despite the efforts of advocates like Guajardo and other leaders of EnrollSA. It’s been hard, sometimes disheartening work, coming in on Saturdays and Sundays, often working till midnight, dealing with massive computer problems and government bureaucrats, having to turn down needy applicants because they don’t qualify for the ACA. But for advocates, the effort has been worth it: The coalition has helped tens of thousands of people get health insurance for themselves and their families.

3. “Why Obamacare Enrollees Voted for Trump,” by Sarah Kliff (Vox, December 2016)

Despite Obamacare’s undeniable impact, the law has been plagued by criticism, from its botched rollout to rising costs to the concept of requiring employers to fund worker wellness. How can a program that’s so effective be so widely reviled? Kliff found answers in Kentucky, a state in which uninsured rates declined 60 percent under the ACA. Kliff talked to Obamacare enrollees in Whitley County about why they voted for Trump despite personally benefitting from the law. Did they not realize that the ACA is Obamacare? How could they use a system they opposed?

I heard from Obamacare enrollment counselors who had seen this confusion play out firsthand, too. “When we’re approaching people about getting signed up on health care, one of the first questions they have is, ‘Is this Obamacare?’” says Michael Wynn, one of Oller’s co-workers. “So we would tell them, ‘No, this is not Obamacare. This is a state-run plan.’”

This was a story I heard a lot, but it was not the one that fit the Obamacare enrollees I met. All but one knew full well that the coverage was part of Obamacare. They voted for Trump because they were concerned about other issues—and just couldn’t fathom the idea that this new coverage would be taken away from them.

“I guess I thought that, you know, he would not do this, he would not take health insurance away knowing it would affect so many peoples lives,” says Debbie Mills, an Obamacare enrollee who supported Trump. “I mean, what are you to do then if you cannot pay for insurance?”

4. “Life in Obamacare’s Dead Zone,” by Inara Verzemnieks (The New York Times Magazine, December 2016)

What happens when you don’t have insurance? With the ACA in peril, it’s a question worth answering. Verzemnieks went in-depth with a group of people who didn’t benefit from the ACA because they live in states that turned down Medicaid. She traveled thousands of miles to interview doctors and patients about life in the insurance gap—an existence that’s full of close calls and question marks:

“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.”

5. “The Devastating Process of Dying in America Without Insurance,” by Mark Betancourt (The Nation, June 2016)

Much has been made of the ACA’s focus on preventative care, routine physicals, and cancer screening for women. But health insurance offers something else, too: The ability to die with dignity. Betancourt investigates what happens to the terminally ill uninsured—a number that is likely to rise with ACA repeal.

By the time Portillo found out about a small county program that sends health workers to the homes of low-income, bedridden patients, her father had been at home without pain medication for two and a half months. The nurse practitioner who came, spurred by Aquilino’s obvious suffering, rushed to order medication to make him more comfortable. Two days later, when the morphine had barely had a chance to soothe him, he was gone.

“Sometimes people die and death is sweeter,” Portillo says. “I don’t think death is ever sweet, but they suffer less. My father suffered so much, he really fought to leave us.”