On a rare Monday afternoon at home, Sarah Gamble, forty-nine, and her thirteen-year-old grandson, Cameron, banter in the living room as a TV blares in the background. There’s a Judge Judy-type show on, with lots of gesticulation and shouting, but they’re not paying attention. Gamble, in yoga pants and a T-shirt, grabs a moss green pillow shaped like a tennis ball and pretends to lob it at Cameron, who is clutching a furry Elmo plush toy; he laughs. Their stocky English bulldog waddles into the room, trying to get a piece of the action.
Behind this seemingly normal routine, however, is a hard-fought path that Gamble fears is at risk.
Thirteen years ago, Gamble made a decision that changed everything. She took in Cameron after he was born to her daughter, then a freshman at Norfolk State University. Gamble was disappointed when she found out about the pregnancy, but she knew how tough it would be for her daughter to take care of Cameron, who has cerebral palsy and a rare kidney disorder called Bartter syndrome. Gamble had never finished college, and she wanted to see her daughter graduate.
Before that, she had a steady income and stable life in the Triangle, a nice car and house, and everything more or less under control. But caring for Cameron, who is nonverbal and fed through a tube, was a full-time commitment. Gamble found herself running around to daily occupational, speech, and physical therapy appointments. Those responsibilities made it impossible for her to work, so she quit her job in human resources. Money ran low. In 2004, with financial burdens mounting, they moved to the projects in Durham. Gamble got rid of her car, and for about three years they were living just off Cameron’s social security check of $377 a month. Once, a bullet pierced their wall.
“Our world changed,” Gamble says. “It really changed our perspective on what was important. It was some of the little things that we took for granted before, like being able to have dinner together, watching some of the smaller things we started to do because we didn’t have the money otherwise. And we had a big focus on Cameron and his care.”
A year or so after moving to Durham, Gamble enrolled in the Community Alternatives Program, which uses Medicaid funds to provide services for children and adults with disabilities and extra needs. The program freed up enough time for Gamble to run errands and go to appointments; then Cameron started going to school, which allowed Gamble to work part-time as a waitress at Raleigh’s 42nd Street Oyster Bar and eventually save up enough money to move to an apartment in Raleigh.
“So this is our normal,” Gamble says, glancing over at Cameron. She ticks off a list of some of their favorite things to do: taking their bulldog for strolls, going to the movies, eating Ben & Jerry’s. “As the old Southern saying goes, it takes a village to raise a child. And these benefits are an integral part of us being able to provide for him.”
The village Gamble is referring to is the support offered by Medicaid, the state- and federally funded health-insurance program for millions of low-income Americans. Now that village faces an increasingly uncertain fate.
The Republicans’ latest effort at health care reform, the American Health Care Act, would have slashed funding for Medicaid to reduce the deficit and finance tax cuts primarily for wealthy Americans. While the AHCA died in the House of Representatives without a vote Friday afternoon, given the current political climate, it seems likely that Gamble’s village will be threatened again in the near future.
Ever since Donald Trump ascended to the presidency, tens of millions of Americansboth recipients of Medicaid, like Gamble, and those previously uninsured and often uninsurable who have gained access to health care under the Affordable Care Acthave found themselves in a deep state of anxiety, worried that life-changing progress made under President Obama will soon slip away.
Since it was signed into law on March 23, 2010, the Patient Protection and Affordable Care Act has woven itself into the fabric of American life, much to the dismay of GOP leaders. During Obama’s presidency, House Republicans voted more than sixty times to repeal Obamacare. On the campaign trail, Trump reserved a special kind of vitriol for the ACA, labeling it a “disaster” that he vowed to swiftly repeal. His contempt built off years of Republican complaints that the ACA was driving up premiums and entering a death spiral.
Those “death spiral” claims are largely overblown, but premiums have risen. Premiums for key Obamacare plans increased by an average of 25 percent in 2017, although tax subsidies usually helped soften the blow. In addition, major insurance companies have pulled out of the health care exchanges because of higher patient costs and lower-than-expected enrollment. For consumers, that means fewer optionsand in some cases, only one.
Imperfect as it may be, however, the ACA has been responsible for historic gains in coverage. The uninsured rate is at an all-time low; about twenty million people have gained coverage, about half due to the ACA-financed Medicaid expansion.
With Trump in office, Republicans had to do more than take symbolic repeal votes and issue jeremiads from the stump; they had to offer an actual replacement. Enter the AHCA, which, according to the Congressional Budget Office, would have left twenty-four million people without health insurance, dramatically increased premiums for older Americans, and dramatically reduced Medicaid funding.
The bill ultimately proved too draconian for the party’s moderate wing and not draconian enough for its hard-line Freedom Caucus. Short of votes, House Speaker Paul Ryan pulled the bill Friday, a humiliating surrender for a speaker who had branded himself as a conservative policy wonk and a president who campaigned as a master dealmaker. And so, for the “foreseeable future,” a forlorn Ryan told reporters Friday, Obamacare will remain “the law of the land.”
Despite that legislative failure, the Trump administration can still chip away at the ACA. For example, Health and Human Services Secretary Tom Price, a longtime opponent of the ACA, could stop enforcing the individual mandate, which would likely result in fewer sign-ups among young, healthy people and thus cause premiums for those still in the individual market to skyrocket, destabilizing the insurance market.
Trump’s stated goalset forth in a tweet Saturday morningis to watch the ACA “explode,” thus making a Republican replacement politically palatable: “ObamaCare will explode and we will all get together and piece together a great healthcare plan for THE PEOPLE. Do not worry!”
At the same time, congressional Republicans don’t seem willing to give up just yet. As U.S. Representative Bradley Byrne of Alabama told the Huffington Post Friday: “This process doesn’t end just because this one bill’s been taken off the table. It just shows that our first attempt didn’t work. This is not our last attempt.”
The only clue about what the next attempt will look like is the one that just failed.
For people utilizing the ACA’s exchanges, the AHCA sought to replace subsidies with less-generous tax credits. In North Carolina, according to the Center on Budget and Policy Priorities, the difference between the Obamacare subsidy and the AHCA tax credit would average $5,360 a year, jeopardizing coverage for a half-million Tar Heels.
The increased costs would have been a deal breaker for people like Raleigh’s Michael Greenspan, a fifty-four-year-old type-2 diabetic who lost his job in 2012 after working in the music industry for more than two decades.
Greenspan needs to see his doctor four times a year to get blood work, but without a job he had limited funds. He obtained a low-level insurance plan that cost more than $400 per month. The plan let him see his doctor just four times a year, the precise number he needed to have his medicine prescribed and blood work completed. That meant that if anything else happenedif he fell ill or got injuredhe needed to wait until the doctor’s appointment to address his medical needs.
“A lot of times I just didn’t see the doctor when I was sick because I couldn’t afford to see the doctor outside of the four times allowed by the plan,” he says.
Things changed in 2014, when Greenspan signed up for a plan under the ACA that placed no limitations on doctor visits. His diabetes soon became more manageable, and he got much-needed hip replacements in 2015, which would have been unthinkable without ACA coverage. He was able to walk comfortably again, started a regular workout routine, and lost more than twenty pounds.
The thought of losing his coverage makes Greenspan nervous, so, with Trump in office, he’s on the hunt for a job that provides steady insurance. “But if I can’t get one, the idea that I might lose my insurance or I might go back to a plan that just doesn’t cover the things is really terrifying for me,” he says.
In a few years, Greenspan will enter a demographic that would also have suffered under the AHCA in North Carolina: those nearing, but not quite at, retirement age. According to research released last week by the office of U.S. Representative David Price, culled from data compiled by the Kaiser Family Foundation, the AHCA’s proposed changes would have disproportionately affected the state’s older, low-income residents.
North Carolinians would have faced the second-highest premium increase in the country; health care costs would have shot up by an average of $7,500. Those increases would have fallen most heavily on the shoulders of older residents: for a sixty-year-old netting $22,000 a year, premiums would have risen by more than $14,000.
Walt Von Schernfeld is in that age group. A Durham resident, Von Schernfeld, sixty-two, lives on less than $20,000 a year and went without health insurance for twenty years before scoring coverage under Obamacare. “It was a great relief,” he says. “A reduction in stress, knowing that I wouldn’t have any reservations getting medical assistance if something was to happen.”
But Von Schernfeld worries about what will happen if the ACA significantly changes.
“I am afraid that I will no longer be able to afford health care insurance,” he says. “If I did not have a subsidy through the ACA, my health care insurance would be almost eleven hundred dollars a month. How can I afford eleven hundred dollars a month when, at twenty thousand dollars [a year], I still have to scrounge to pay my bills at the end of every month? Listen to the people who need health insurance. It should not be a privilege for the wealthy.”
Dubbed “the poster child of the ACA” by her physician, Retta Riordan is a sixty-four-year-old small-business owner who lives on a picturesque, tree-lined street in Apex.
In 2012, Riordan injured her knee, but she wasn’t able to have it repaired because she’d lost her out-of-state insurance after moving to North Carolina from New Jersey in 2011 (her insurance had been canceled). Riordan frantically sought insurance in North Carolina, to no avail. Every company she approached rejected her application.
“I had expected to pay more for my preexisting conditions, expected to have a higher deductible, expected maybe even to have my knee as an exclusion, but I never expected to totally have my insurance rejected and my applications rejected,” she says.
As a result, she spent ten months uninsured. That changed on January 1, 2014, when the Obamacare exchanges went live.
“We all know what happened,” she says. “I got coverage and, at midnight, I let out a big, huge hoopla because I was finally going to get covered.”
The next day she was in the orthopedist’s office; two weeks later, she had her knee surgery. Her knee had deteriorated over the past year, her physician noted, making the path to recovery longer and more difficult.
The consequences of Riordan’s period without insurance were psychological, as well. “I lived in constant fear that I would come down with a catastrophic illness or be in a car accident and end up with tens or hundreds of thousands of dollars of medical bills,” she says.
Riordan’s quality of life and overall health declined, her recovery time increased, and, because her worsened injury meant more time in physical therapy, the treatment costs increased.
Since then, Riordan says, “the political climate has changed dramatically. With the most vulnerable people being hurt, the wealthy are going to get massive tax cuts. The Congress and president are treating health care as a political game, but for me and the twenty million other people who are covered under the ACA, this is not political. It’s personal.”
Not only would the GOP’s stillborn replacement for the ACA have slashed the program’s Medicaid expansionwhich nineteen states, including North Carolina, declined to take part in, leaving a half-million residents in the coldit sought to cut Medicaid spending by 25 percent over the next decade and fundamentally reconfigure the program into a block grant system or per-capita cap, which states could choose between as a funding structure, a long-sought goal of many fiscal conservatives.
As far back as 1981, President Reagan argued before a joint session of Congress that Medicaid was not “cost-effective.”
“Right now,” he said, “Washington provides the states with unlimited matching payments for their expenditures; at the same time, we here in Washington pretty much dictate how the states are going to manage those programs. We want to put a cap on how much the federal government will contribute, but at the same time allow the states much more flexibility.”
Such a reform, however, could take away the support vulnerable North Carolinians receive, says Ciara Zachary, a health policy analyst with the N.C. Justice Center.
“The scary thing with block grants is now, as Medicaid is written, there are mandatory services that have to be given to people based on their eligibility,” Zachary says. “So it creates this base level of health care that people can access no matter what. And with a block grant, states make different priorities, and maybe they don’t think pregnant women should get health care, or maybe they would put limits on how long a person can get home health care for a condition.”
Considering that Medicaid accounts for about one-fifth of the money North Carolina receives from the federal government, any sort of cap could have a devastating impact.
“There will be a negative ripple effect if there are extensive cuts to the program,” Zachary says. “A lot of lives are at risk. The fact that they’re adding on this entire additional restructure of the basic Medicaid program is very alarming.”
That, in turn, could affect Sarah Gamble’s access to funds. “Would [North Carolina] decide to provide Medicaid, or would it create waiting lists, saying we only have a few spots?” Zachary says. “What if she doesn’t get on that wait list? What is she supposed to do for her child? Would she quit her job and try to take care of her child full-time?”
Gamble knows that’s exactly what she would have to do if those services became unavailable. Caring for Cameron full-time would mean she’d have to quit her job. The limited income would mean they’d have to move, perhaps back to the projects in Durham. Maybe she’d have to get rid of her car, which is big enough to travel with Cameron’s wheelchair. They’d make do, but Gamble imagines that taking away access to trained caregivers would slow down Cameron’s development.
“It would be a lifestyle change for our entire family,” she says. “And it’s going to impact our community as well. I think of other families who are probably in very similar situations as I am, and we kinda just sit back and wait for what’s going to happen.”
The worst didn’t happenat least not last week. But while this battle may have been won, the war isn’t over yet.
This article appeared in print with the headline “Critical Condition.”