If the ACA is repealed, the consequences could be devastating for the countless patients who are developing long-lasting medical conditions due to COVID-19.
This article is part of an ongoing series into how the Affordable Care Act has made pre-existing conditions a thing of the past. For a complete background on how pre-existing conditions were treated before the ACA, check out the first installment here.”
Right now, across the United States, there are tens of thousands of Americans who’ve been sick with COVID-19 for months. Not days. Not weeks. Months.
These individuals, collectively dubbed “long haulers,” have experienced an array of symptoms, ranging from fatigue and shortness of breath to more serious issues affecting the heart, lungs, and brain.
Hannah Davis, a 32-year-old computer programmer, experienced extreme fatigue, a racing heart rate, and difficulty breathing. She also felt like she had developed a brain injury. “I have a hard time remembering who I was,” Davis told BuzzFeed News. “It was hard to remember I had to feed myself a couple times a day.”
The plights of people like Davis have perplexed doctors and public health professionals. They’ve also reinforced just how little we still know about the novel coronavirus and the disease it causes, COVID-19. “We have a disease that may cause problems that we don’t even know the magnitude of yet,” Dr. Dori Russ, a Florida-based physician, told COURIER.
One thing that has become increasingly clear, however, is that many Americans will likely suffer long-term consequences from COVID-19 and potentially develop chronic, lifelong medical conditions as a result.
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“There are people who are getting COVID who are not dying of it,” said Dr. Ian Gilson, a Wisconsin physician. “They’re surviving. But they’re surviving probably with long-term [conditions].”
These conditions could include neurological issues, lung damage, and myocarditis—or inflammation of the heart muscle—which makes access to health insurance essential, according to Dr. Gilson.
The landmark Affordable Care Act (ACA), which went into effect in 2014, guaranteed protections for the tens of millions of Americans living with pre-existing conditions, and would protect those who suffer long-term complications as a result of COVID-19.
But that could all change.
A coalition of 18 Republican-led states—with the backing of President Donald Trump—are suing to repeal the ACA. The case is set to be heard before the U.S. Supreme Court this November. If the ACA is repealed, more than 20 million people will lose health insurance, and tens of millions could once again find themselves denied coverage due to diabetes, cancer, heart disease, and—yes—COVID-19 complications.
Pre-existing conditions before the Affordable Care Act
Howard Koh knows better than most how difficult it was for people with pre-existing conditions to get health coverage before the ACA. The former assistant secretary for health for the U.S. Department of Health and Human Services under President Barack Obama, Koh was intimately involved with rolling out the healthcare law.
“If you had a pre-existing condition before the ACA, depending on where you lived and whom your carrier was, you could be denied coverage or be deemed uninsurable,” Koh said. “And given the burden of chronic disease in our country, that involved millions of people.”
In 2010, the year the law was passed, an estimated 50 million Americans were uninsured, according to the U.S. Census Bureau. Many of these people were uninsured because they had pre-existing conditions.
While the ACA has been far from perfect, the law made it illegal for insurance companies to discriminate against people with pre-existing medical conditions, allowing millions of Americans to obtain coverage. Without it, those who survive the coronavirus with long-term complications would suffer.
“They’re really going to be in trouble. They’re not going to be able to get good care,” said Dr. Gilson. “They’re going to get these junk policies that you can get that exclude anything you need. That’s the way it used to be.”
The coronavirus is still new—and can already cause dozens of long-term symptoms.
The number of people that develop long-term conditions as the result of COVID-19 is impossible to predict yet. However, based on initial research, this population could number in the hundreds of thousands in the United States alone.
A study in Italy found that 87% of hospitalized patients were still exhibiting symptoms after two months, while German researchers observed in a cohort of 100 patients, including some who recovered at home, that 78% had heart abnormalities after two or three months. Another study of 60 COVID-19 patients published in the medical journal Lancet found that 55% of them were still displaying neurological symptoms during follow-up visits three months later.
Perhaps more worrying, one informal survey of 640 long-haulers found that they reported experiencing 62 different symptoms. These have included everything from lung damage and fibromyalgia-like breathing problems to extreme fatigue and abnormally heavy menstrual cycles (or none at all).
In some cases, people experience a half-dozen or more severe symptoms. Lauren Nichols, who first fell sick with COVID-19 on March 10, was still experiencing symptoms in August, when she spoke to The Atlantic. During that five-month span, she had experienced bouts of hand tremors; fever; night sweats; gastrointestinal problems; morning nausea; extreme fatigue; bulging veins; excessive bruising; an erratic heartbeat; short-term memory loss; gynecological problems; sensitivity to light and sounds; and brain fog.
And it’s not just the elderly or those with previous medical conditions that are being affected. Plenty of young, healthy, fit people are developing serious conditions in the wake of COVID-19. More than a dozen college athletes at Power Five conference schools have been identified as having serious inflammation of the heart muscle following coronavirus infections, according to ESPN. In Major League Baseball, one of the best Boston Red Sox pitchers, Eduardo Rodriguez, told reporters he felt “100 years old” after he developed the same condition following his bout with COVID-19.
The Mayo Clinic has warned that COVID-19 can cause organ damage, strokes, seizures, and Guillain-Barre syndrome, a condition that causes temporary paralysis. COVID-19 may also increase the risk of developing Parkinson’s disease and Alzheimer’s disease, the clinic states on its website.
Without the ACA, chronic illnesses caused by the coronavirus could exact an even worse toll.
The uncertain futures facing these patients have amplified Koh’s concerns. “People with COVID can be in it for the long haul and be chronically ill,” he told COURIER. “So that whole feature of COVID makes the importance of stable, strong insurance coverage even more important.”
Dr. Pritesh Gandhi, a primary care doctor based in Austin, Texas, was also dismayed about what a potential repeal of the ACA would mean for those patients. “If, for example, there are certain neurologic complications that will require physical therapy or certain cardiovascular complications that will require seeing specialists, without the protections of the ACA, there’s no guarantee that this segment of our population will be protected,” he said.
Without coverage, these people would either pay out of pocket—leaving them to face exorbitant medical bills, which could push them into debt or potentially bankruptcy—or forego care, which could worsen their medical conditions and potentially lead to death.
Experts say the ACA is key to COVID-19 recovery, but President Trump wants to repeal it.
President Trump and the GOP have long promised they would protect people with pre-existing conditions—yet they’ve never actually proposed a bill to do so. In August, Trump said he would issue an executive order requiring insurers to cover pre-existing conditions. At the same time, he is supporting a lawsuit to repeal the very law that guarantees those protections.
Overturning the ACA during the pandemic would be doubly devastating. Harvard researchers Sumit Agarwal and Benjamin Sommers recently published an analysis in the New England Journal of Medicine that found the ACA’s expansion of Medicaid substantially reduced the number of people who become uninsured after losing a job.
While their data does not cover the coronavirus pandemic, they said their results “indicate the critical role that the ACA will play in alleviating coverage losses related to the COVID-associated recession.”
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Initial research appears to confirm that hypothesis. An estimated 12 million Americans have lost access to employer-sponsored health insurance, according to the Economic Policy Institute (EPI), but many of those people have since obtained coverage through Medicaid. Over 2 million people enrolled in Medicaid from the end of February through the end of May, according to a Kaiser Family Foundation analysis of state enrollment data. By now, more than 4 million people are estimated to have enrolled in the program since the pandemic began, according to the EPI.
If the ACA were repealed, Medicaid expansion would unravel as well, and many of those people would lose coverage, as would anyone who has obtained insurance through the ACA marketplace.
“In the current context of millions of Americans losing their jobs and an ongoing pandemic, overturning the ACA would most likely be devastating to patients, clinicians, hospitals, and state economies,” Agarwal and Sommers wrote.
What happens if Republicans are successful? According to Wendell Potter, the founder of the Center for Health and Democracy, a nonprofit that aims to transform America’s system of health coverage, we would be worse off than we were before the ACA was implemented.
“Healthcare costs have gone up,” he said. “We’ve got with this pandemic, more and more people who will have pre-existing conditions, so it could be absolutely more catastrophic than I think anyone can even imagine if the ACA goes away.”