The Affordable Care Act returns to the Supreme Court on Tuesday for the third time as Republicans continue their efforts to get the judiciary to do what the party has failed to do politically: Kill Obamacare.
And for the third time since 2012, millions of Americans wait, terrified, to find out whether they will lose their health coverage. An estimated 21 million people could find themselves uninsured if the Supreme Court rules to eradicate the law, according to the Urban Institute, a New York-based research organization.
But that figure understates the damage a decision against the Affordable Care Act would have on many other Americans.
Those most likely to become uninsured are people with low-to-moderate incomes who qualify for Medicaid or subsidized private insurance under the 2010 health care law.
Millions more with preexisting conditions could wind up virtually uninsurable, just as they were in the days before the Affordable Care Act. Others would lose access to the law’s guaranteed benefits, which include coverage for hospitalizations and prescription drugs. And those with the highest health care expenses could once again face annual or lifetime limits on their coverage that would cut them off once their costs reached a certain dollar threshold.
As Supreme Court justices hear oral arguments on Tuesday and consider how to rule, these six Americans will be watching and worrying.
Tony Gordon, Millbrook, New York
“The thing that really frightens me is the preexisting conditions, because I have multiple,” said Tony Gordon, 25. Gordon has Type 1 diabetes, asthma, hypothyroidism and seasonal allergies that exacerbate the asthma, all of which require medication, supplies, doctor visits and emergency care on a regular basis. These ailments also make Gordon more prone to infections. “A large portion of my life is kind of dedicated to just keeping my body functional.”
“I didn’t choose to be diabetic,” Gordon said. “Why should I have to suffer because my body is fighting me? It’s so disheartening that there are humans out there who don’t understand and think that just because you happened to get unlucky in life, you don’t deserve to live,” said Gordon, who is studying communications at the State University of New York at New Paltz and works at a library and a planetarium.
In addition to worrying about their long-term future in a world where insurance companies can go back to discriminating against people because of their medical histories, Gordon has to worry about the day-to-day costs of staying healthy.
Gordon qualified for Medicaid under the ACA’s expansion of that program to more low-income adults; 38 states and the District of Columbia have participated. “I would be extremely terrified” if the high court were to overturn the ACA, they said. “I am LGBTQ, so I am very unfortunately used to people debating my rights.”
Julie Buckholt, Milwaukee
Myasthenia gravis is an autoimmune disease that causes weakened, fatigued muscles. Julie Buckholt, 58, and her two adult daughters have this condition, which has no cure, and all require regular injections of intravenous immunoglobulin.
Julie Buckholt gets this treatment weekly. Megan Buckholt, 25, and Rachael Gonzalez, 28, need it less often but still rely on it to stay alive.
Those injections would cost $16,000 each if they didn’t have insurance, Julie Buckholt said, an amount beyond the reach of nearly all Americans. As a high-cost patient with a serious chronic illness, she’s among those Americans who have benefited from the ACA’s prohibition against insurance companies setting hard-dollar caps on how many bills they will pay over the course of a year or a lifetime.
“Without this medication, any one of us could die because of the severity of the disease,” she said. Buckholt shared her story at the Democratic National Convention in August.
“Without the Affordable Care Act, I would have reached the lifetime max already of a million dollars. Before the Affordable Care Act, that was a constant strain,” Buckholt said. “We are scared to death as to what’s going to happen with the Supreme Court.”
In addition to anxiety about the ACA disappearing, Buckholt fears for a future in which her daughters’ preexisting conditions make it impossible to get coverage.
“Everything is up in the air. We don’t know what’s going to happen,” she said.
Marcie Paul, West Bloomfield, Michigan
The guarantee of coverage for people with preexisting conditions helped Marcie Paul, 62, and her husband, Stewart Shevin, to start their own business. Job-based health insurance plans usually don’t screen for preexisting conditions, but the insurers routinely denied coverage to people based on their medical histories in the individual market before the ACA. They would be able to do so again if the GOP plaintiffs win the lawsuit.
Both Paul and Shevin, 64, have beaten the odds before and survived cancer. Though Paul is hoping the same happens at the Supreme Court, she has no illusions about what would happen to her if the ACA goes away. “I still cannot believe that they will take insurance away from 20-some million people. I just can’t believe it,” she said.
Paul already has to worry about a recurrence of ovarian cancer. “I mean, one is bad enough hanging over my head. To not have medical coverage for that is pretty unthinkable for me,” she said. Shevin is almost old enough for Medicare, but Paul has a few years left during which she needs health coverage.
“We’d be screwed. We’d be totally screwed,” Paul said. “I would have very few options. At my age, I’m not going to go out and get a job at a big company and get good benefits tomorrow because I got sick ― and then take time off because I need surgery and chemo.”
Andrew Blackshear, Benicia, California
When Andrew Blackshear was a healthy 27-year-old, a freak incident led to a serious heart condition that required two surgeries to correct. Blackshear, now 32, inhaled a Coccidioides fungus that causes Valley fever. “I breathed in a fungus I didn’t even know existed,” he said.
His health insurance company at the time didn’t want to cover his medical bills and relented only in the face of a lawsuit.
“That’s what scares me the most is going back into that realm,” Blackshear said. “To have a company that will battle someone while they’re going through a life-or-death illness and still need care.”
“If I needed another heart procedure all of a sudden and I was on one of those plans again, I’d be very scared,” said Blackshear, who currently is covered by a policy from the ACA’s exchange. Though imperfect, he said, the policy is reliable, and he hasn’t had trouble getting the insurance to cover his annual electrocardiograms, cardiologist visits and blood work.
Since his illness and his brush with the dark side of the American health care system, Blackshear has been an active volunteer with the American Heart Association, testified before Congress and attended this year’s State of the Union address as the guest of Rep. Mike Thompson (D-Calif.).
Blackshear fears dealing with an insurance industry no longer required to abide by the ACA’s protections for people with preexisting conditions.
“I’d be right back where I was but maybe four steps backward, because now I actually have something that I could be discriminated against for,” Blackshear said. “There’s millions of people who are in these situations, watching a television, hoping that people far away will make a decision that will help them in their lives.”
Chelsia Rice, Helena, Montana
Chelsia Rice, 43, survived a rare form of bladder cancer, squamous cell carcinoma, thanks to the Mayo Clinic in Rochester, Minnesota ― and no thanks to the pre-ACA health insurance industry.
Rice was diagnosed in 2012. At the time, her spouse, Charlie Crawford, had job-based health insurance. She sought to join their plan when the company coincidentally opened up its health benefits to spouses and family members a few months after Rice began experiencing symptoms. But, after a year of paperwork, red tape and appeals, the answer was no. Rice’s cancer was a preexisting condition, the insurance company said, and it wouldn’t cover her.
Ironically, cost was a main reason Rice had postponed investigating her symptoms before then, despite suspecting something serious was wrong. The possibility of joining Crawford’s employer-sponsored plan seemed to come along at just the right time. In the meantime, Rice met with a urologist, who encouraged her to wait on treatment until she had health insurance.
That doctor consultation turned out to be the reason the insurance company refused to cover her. The couple spent the entire time Rice was undergoing major surgery and potent chemotherapy fighting with the insurance company. “It was a full-time job, and it was so hard to do through this fog and fatigue and every other symptom that comes up,” Rice said. “It was just the cruelest thing to make somebody go through.”
The Mayo Clinic, charities and fundraisers helped enough that Rice and Crawford could pay down most of her roughly $1 million in medical bills, but the cancer still cost the couple $25,000 out of pocket. Rice still needs ongoing care and supplies that cost about $5,000 a year, and Crawford, 48, requires medication to treat their bipolar disorder.
The couple now has coverage from a policy bought from the ACA’s health insurance exchange, for which they receive financial assistance.
They both realize how vulnerable they are, and how desperate their situation could become, if the Supreme Court invalidates the ACA. “If shit hits the fan, we’ll probably be the first people to not make it,” Rice said. “It’s a frightening time.”
Veronica Daniels-Lewis, Missouri City, Texas
When the coronavirus economy cost Kevin Lewis, 58, his job as a teacher and youth basketball coach, it also meant the loss of the health insurance that covered his family. His wife, Veronica Daniels-Lewis, had to figure out some way to continue her treatments for multiple sclerosis.
“That was something that totally terrified me is how was I going to be able to afford this without insurance coverage,” said Daniels-Lewis, 58. “I’ve been on treatment for almost 24 years, and all of a sudden I’m faced with not having anything.”
Paying full price to stay on his old employer-sponsored plan, through a law known as COBRA, was far too expensive. “I was in a panic, so my only other choice was to reach towards the ACA to find something on the marketplace that was able to fit into our budget,” Daniels-Lewis said. “It saved me. I lose my breath every time I think about what would’ve happened if I wasn’t able to reach for that lifeline.”
Daniels-Lewis has been living with multiple sclerosis since 1996 and with asthma since childhood. In MS patients, the immune system attacks the protective sheath that surrounds the body’s nerve fibers, leading to physical and cognitive disabilities that can range from moderate to severe. Daniels-Lewis experiences spasticity in her muscles that requires the use of a walker or a cane to move around, among other symptoms.
But the solution that enabled Daniels-Lewis to continue her MS treatments may not be there for other people if the Supreme Court rules against the ACA.
“For those who have lost employment, who are affected by illness and may not have family to assist, having a plan like the ACA is a must,” she said.
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