For some suffering from dangerous chronic conditions, the Affordable Care Act provided needed relief—but the future is suddenly murky.
When Farrah Farley quit her job with the Department of Justice to campaign for Hillary Clinton, she never worried about losing her healthcare. After all, she was a competent worker who knew could prove herself quickly so long as she got a foot in the door. And just as she predicted, after only a few weeks, the 32-year-old was promoted from volunteer to field organizer. The shift in gigs resulted in barely a disruption in her insurance coverage—which was good, because for a decade she's been taking Lipitor to treat a high-cholesterol condition she's had since birth. During the next few months, her candidate stayed solidly ahead in the polls, which made the Georgetown graduate confident that Obama-era policies would continue. Essentially, she felt confident that whatever healthcare she ended up with post-election would be sufficient for her needs, and would only get better with time and further reforms.
But then, on November 9, Farley was blindsided in the same way that much of America was. She also found herself in a position that she never expected, one in which she was suddenly worried about whether she will still have access to Lipitor in the future.
"It keeps me from having a stroke at 34," Farley says. "I still am kinda in the denial stage of grief."
Farley's relationship to the election may be unusually intimate, but she's far from alone in her anxiety about insurance in the wake of Donald Trump's victory, which all but guaranteed the Affordable Care Act's repeal and major changes to the health insurance market. Although congressional Republicans' precise plan to repeal and replace the existing law remains vague, they've long promised to wipe out the Obamacare regime. That could potentially leave millions without insurance, and even if Republicans delayed the implementation of the repeal, the Obamacare exchanges where the uninsured can buy plans would be decimated. For many Americans, this means that the future of their healthcare is suddenly up in the air.
Obamacare provided insurance to the previously uninsured in several ways. According to a March report by the Department of Health and Human Services, 6.1 million people between the ages of 19 and 25 used a provision of the ACA to stay on their parents' health insurance. A RAND study from 2015 found that more than 4 million uninsured people had bought plans on the exchanges, and another 6 million previously uninsured people were covered by the ACA's Medicaid expansion. It's unclear what would happen to Obamacare's beneficiaries if the law vanished overnight, especially those who have "preexisting conditions" that many insurers refused to cover before the ACA forced them to.
Luckily, for Farley, she's able to stay on insurance through COBRA for about $500 month thanks to the Clinton gig. She can't quite work up the nerve to google how much it will cost after that runs out this fall, but she assumes that if it comes down to it, she'll probably just go without.
Unlike Farley, Danika Peterson's daughter wasn't born with a life-threatening illness, though she developed brain cancer at the age of one. She's on her father's plan, which means the family pays about a $2,000 deductible, and everything after that is covered. Within the first six months of the diagnosis, Peterson says that a tumor biopsy, stays in the ICU, visits to cancer specialists, and MRIs, all racked up to $140,000. Right now, her drug is $3,000 a month, which is less than some of the others she's been on, but is by no means cheap.
Peterson's been scanning the news and looking for hints of what might happen. She remembers reading that the Republicans might create a plan that keeps those with preexisting conditions covered as long as they don't allow their insurance to lapse. (An Obamacare alternative favored by Tom Price, Trump's pick to lead the Health and Human Services Department, goes this route.)
"Which is great as a preexisting condition option," she says. "But if they go more extreme than that, maybe we'd still be able to get health insurance, but it would be $150,000 a year. We definitely don't make that in six months."
Peterson is also worried about what would happen if her husband lost his job as a software tester, or if she lost hers as the news director of a public access station in Minnesota. Even more concerning is what might come to replace Obamacare. If there's no provision that allows people to stay on their parents' insurance from the ages of 18 to 26, Peterson worries about the years her daughter could spend uninsured. And if the ban on denying people coverage for preexisting coverage is lifted, it's unclear when she might ever get insured again. The tumor has been in flux since the diagnosis and is slowly eating away at Peterson's daughter's optic nerve, which is making her go blind.
"It's not going away, but it's not getting a whole lot bigger," she says. "Stable is not really a medical condition."
Will Stratton has had a more complicated health insurance odyssey than most young people. He was lucky enough to have insurance when he was diagnosed with stage three testicular cancer at the age of 26. But the acclaimed musician, who was working at a Brooklyn law firm at the time, says that the coverage he had didn't give him the best possible chance of survival. His co-workers were young, and none of them had ever been really sick. So it wasn't that he was being screwed over by his employer—it was more like he reached the limits of what they could afford and thought was appropriate.
The insurance would only let him see a select few doctors in Brooklyn, though the best specialist was near his parents in Seattle. Thanks to the ACA, he was able to transfer to his dad's insurance, quit his job, move home, and be treated by the best person possible. He was also able to petition the insurance company to keep him onboard for more chemotherapy after he turned 27. He was in the clear after four rounds.
Today, Stratton doesn't have insurance. After his Social Security disability ran out, there was only one plan in the New York state exchange that would allow him to enroll. It went out of business. He's back to work upstate and waiting for his employer's plan to kick in around June. Until then, he's applying for charity cases to get his follow-up appointments taken care of.
"I've had experiences with the exchange that have kind of colored my opinion of the Affordable Care Act—I think like everybody who's had to deal with a federal exchange or a state exchange," he says. "But in terms of my survival, I think it probably saved my life."
Liz, a 41-year-old from the DC area who did not want me to use her full name, says that if the ban is lifted she'll probably never have insurance again. Her mom died at the age of 46 due to complications from multiple sclerosis after surviving cervical cancer. The "genetic possibility of an auto-immune disorder" was enough to keep insurance companies from taking Liz on prior to 2010.
What's more, she has no idea where two two stepsons would be without the Affordable Care Act. Her eldest stepson is bipolar and first had a psychotic break at 17; he would have been uninsured the moment he turned 18 and unable to get medicines that manage his mental health. Liz's younger stepson is an Army veteran with a traumatic brain injury and post-traumatic stress disorder. Because he's still 25, Liz is using her insurance to get him surgery to repair a botched operation that poorly removed and reattached his right ear.
Liz had good healthcare prior to the Affordable Care Act and still managed to benefit immensely from it. Her experiences with the US healthcare system have left her pretty pissed off.
"Repeal with absolutely zero plan for replacement or discussion about how it might be improved is, I believe, one of the most cowardly, inhuman, disgusting actions that politicians could do," she says. "It makes no sense whatever to me that anyone should be denied healthcare if they need it in this country, nor that anyone ought to be bankrupted for trying not to die."
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