Protesters in Charleston, West Virginia in 2016. Photo provided by WVAHC.

A blurry eye and a numb foot. Those were Rachel Montgomery’s earliest symptoms when she was diagnosed with multiple sclerosis about nine years ago. When she’s on medication, she lives normally. Without it, she loses her balance. Fatigue sets in and numbness spreads throughout her body. 

Montgomery is one of approximately 382,000 nonelderly West Virginians living with a preexisting condition. 

“I remember, probably four or five years ago, seeing the list of what insurance companies consider preexisting conditions and it was over two pages long,” Montgomery, a Morgantown resident, said. “Everyone in my family has something that’s considered a preexisting condition.”

Like many, Montgomery’s diagnosis is costly to treat. She says her medication alone costs nearly $70,000 a year, but her insurance makes it more affordable.

Before the Affordable Care Act (also known as Obamacare) was enacted, insurance companies could deny coverage to West Virginians like Montgomery because of their medical histories. And this didn’t just apply to rare autoimmune disorders like multiple sclerosis. More than a third of West Virginians under age 65 have a medical condition that would have previously made it difficult to get affordable private insurance: anything from depression to cancer, diabetes to heart disease or asthma. Even pregnancy could be a reason for denied coverage or increased rates.

The health care law banned that discrimination and required insurers provide coverage to everyone who wanted it. That provision — along with the expansion of Medicaid in many states, including West Virginia — is popular. But critics point to rising premiums, and have made repeated efforts to dismantle the law. 

Arguments supporting the most recent effort will be heard before the U.S. Supreme Court on Tuesday, and West Virginia Attorney General Patrick Morrisey will play a role. This lawsuit, brought by Morrisey and 17 other state attorneys general, recently played a major role in the state attorney general race, where Morrisey won comfortably over Democratic challenger Sam Petsonk, who advocated for the preservation of the law. Petsonk, alongside medical professionals, argued that the elimination of the law would come at a billion dollar cost for West Virginians, and jeopardize access to insurance for hundreds of thousands of residents.

Morrisey has yet to offer a plan to replace the federal dollars the ACA brings into the state should the law be overturned. But throughout the attempts to eliminate the ACA, politicians who oppose the law have promised that people with preexisting conditions will still be able to access health insurance if the law is overturned.  

“All the people that have been preaching doom and gloom for the longest time will be proven wrong as we’ve talked about for years,” Morrisey told MetroNews in an interview in early 2020. “People will be protected if they have preexisting conditions.”

But that’s easier said than done.

The ACA offers three tiers of protections. Preventing the denial of coverage is just one.

In January 2020, then-Senate President Mitch Carmichael introduced a Morrisey-backed bill that he said would protect West Virginians with preexisting conditions in the event that the ACA was repealed.

The West Virginia Healthcare Continuity Act, according to Morrisey, would make it illegal for insurance providers to deny coverage to people based on their medical history. 

Despite the promising sentiment, the bill failed. Advocates for the ACA opposed the legislation.

“At first I thought, great, you know, at least we can have something,” said Jessie Ice, executive director of West Virginians for Affordable Healthcare. “Then I dug into it.”

Ice said the bill wouldn’t be an adequate replacement because it fell far short of the three major protections that the ACA currently ensures.

The first of these protections is the one we frequently hear about: it prevents insurance companies from denying coverage to people with preexisting conditions. It’s a point that has taken on magical political power for those who are working to dismantle the law, as adversaries of the ACA, like Morrisey, lean on the promise that they’ll preserve the protection in the event that the law is overturned. 

But requiring insurance companies to cover everyone regardless of medical history doesn’t mean by itself that coverage will be affordable, or prevent insurers from charging some people more if they have conditions that are expensive to treat.

“If you’re a high-income family, and you have the money for it, then that sort of protection could be useful,” said Dr. Ben Sommers, a physician and health economist at Harvard University. “But that’s not most people.”

While the first protection guarantees coverage, the second and third are equally important for West Virginians, because they guarantee continuity of care and affordability.

Currently under the ACA, insurers aren’t just barred from denying coverage, they’re not allowed to charge higher rates for people with preexisting conditions, which could effectively price those people out of insurance.

“It’s one thing to say that an insurer can’t deny someone coverage, but if they’re allowed to make coverage as costly as they want to, and there are no federal dollars to offset those expenses, it has the same effect,” said Kelly Allen, director of the West Virginia Center on Budget and Policy.

The ACA also eliminated lifetime spending caps — when an insurer will only provide coverage up to a certain amount of money — which means insurance will only pay for care before the cap is met. After that, people with health conditions that require expensive treatments are on their own.

The ACA’s protections for people with preexisting conditions is like a foot stool. Without all legs working together, the whole thing falls. But what Morrisey and other GOP leaders are offering as promised replacements will only address one leg of the stool. It won’t actually solve the problem. 

In West Virginia, insurance operators hold the power

But what if state officials proposed a plan that addresses all three legs of the stool — guaranteeing everyone coverage at the same rate, with no lifetime spending caps? Experts say that getting insurance providers to play ball in West Virginia will be nearly impossible if there is no federal law to even the playing field.

“States have the ability to say that insurance companies can’t discriminate on really whatever grounds they want,” said Valarie Blake, a professor of health care law at West Virginia University. “The problem is that in the absence of federal regulation, states that are more aggressive may find that an insurer is less willing to operate in that state, and more likely to go to another state that’s less restrictive.”

In West Virginia, we don’t have much negotiating power.

Blake said that most of the ACA reforms around insurance were made to regulate private insurance markets that sell individual and small group insurance. What federal regulation did was put in place a standard set of rules that insurers had to follow, across the board, regardless of the population they were serving.

If those standards were to be eliminated, and states were left to regulate on their own accord, unhealthy and poor states like West Virginia — where a disproportionate number of residents live with chronic illness and face heightened health risks — would likely have to lower restrictions to attract insurers or risk being left out altogether.

“If [insurers] face market restrictions nationwide, then there’s no safe haven for them to run to,” Blake said. “But if it’s a state by state issue, West Virginia would very much want to regulate, but might scare insurers out of the state by doing so.”

It’s sort of like how professional sports leagues instate salary caps on how much a team can spend on players’ salaries. The caps keep things competitive by evening out the market and making sure that having the most money (or healthy people) doesn’t equate to an advantage that leaves the less fortunate behind.  

But even if insurers do want to operate in West Virginia, there have to be healthy people to help cover the costs of the sick.

Lindsay Allen, a professor of health policy at West Virginia University, said that’s one of the reasons why the individual mandate that required people to have insurance was important in the first place, and why federal subsidies that encourage people to buy health insurance are critical.

“People need to understand that you can’t promise coverage to sick people without also having healthier people covered in the same risk pool,” Allen said. “The money that insurance companies use to pay medical bills comes from people’s premiums. Healthy people’s premiums help support sick people’s medical bills, in addition to their own premiums.”

Allen said the removal of the individual mandate in combination with the loss of federal subsidies if the ACA is overturned would hasten what health care researchers call the adverse selection death spiral — it refers to the death of the market.

“Having an insurance market that consists exclusively of people who are sick…will very quickly crumble in on itself,” Allen said. 

It’s about more than insurance. It’s a matter of civil rights.

Beyond providing protections for people with preexisting conditions and expanding access to health care across the country, the ACA was a significant step forward for civil rights.

“The Affordable Care Act actually has its own civil rights statute,” Blake said. “So apart from the consumer protections, it specifically says that recipients of federal money can’t discriminate based on age, race, disability, and sex.”

Blake, whose legal work focuses on the intersection of civil rights and health care, said that’s significant.

“For the first time ever, a federal law prohibited sex discrimination in health care,” said Blake. “It was also the first time that private insurance companies were required to toe the line with nondiscrimination standards.

According to Blake, if the entire ACA were to fall, those protections would go away as well.

“In many circumstances, litigants and the government would lose the ability to go after discriminatory health care entities that are discriminating based on those more sort of classic legal categories of age, race, disability and sex,” Blake said.

While experts say it’s very unlikely that the entire ACA will be overturned, the question left is how much of it will remain intact, how much will fall and how future governments will work to pick up the pieces.

We’ll get a first glimpse of it all Tuesday, when the Supreme Court hears oral arguments in the case.

Correction: Montgomery is a Morgantown resident.

Lauren Peace is a Report for America Corps Member who covers public health.