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For St. Louisans with pre-existing conditions, fate of the Affordable Care Act is personal

Valéria Souza, 36, hugs her step-daughter in a family photo.
provided by Valéria Souza
Valéria Souza, 36, hugs her step-daughter in a family photo. Souza has multiple sclerosis, which could have prevented her from enrolling in individual health insurance before the Affordable Care Act. "

Three in 10 Missouri adults could have difficulty purchasing their own health insurance if the Affordable Care Act the next Congress fully repeals the Affordable Care Act. That’s because one of the act’s main provisions requires insurance companies to cover individuals with pre-existing conditions — a definition that once included pregnant women, cancer patients in remission and people with such common medical issues as obesity.  

The figures come from an analysis by the Kaiser Family Foundation, which determined that about 27 percent of American adults under the age of 65 would qualify as having a pre-existing medical condition. In Missouri, the rate is slightly higher.

Valéria Souza, who teaches Portuguese at Washington University, said the issue affects everyone, because medical issues can arise suddenly and without warning. In her case, she woke up one day and couldn’t feel her legs.

“You really can go from being a very healthy, robust individual with no health problems, and overnight you absolutely can develop a catastrophic chronic or acute illness. It can happen to anyone,” Souza said.

Doctors later diagnosed her with multiple sclerosis. At the time, she lived in Massachusetts, just as then-Gov. Mitt Romney began implementing a health care system that’s markedly similar to the ACA.

“I had it not been for that, I would have legitimately been bankrupted at 27 years old,” Souza said. “[My] medication, out of pocket, would be priced at approximately $67,000 a year.”

Souza and hundreds of others tweeted their stories over the weekend, using the hashtag #The27Percent. The burst of online activism was inspired by author and surgeon Dr. Atul Gawande, who posted a tweet to say that, without the ACA, his son would be uninsurable in the non-group market.

Washington University genetics professor Karen Meltz Steinberg also joined in. In the early 2000’s, she considered taking time off during graduate school to start a family, but found that insurance companies turned her down because she has Crohn’s disease.

“That’s really stuck with me throughout my career,” Meltz Steinberg said. “Even though I’m lucky to be employed and very lucky to have health insurance, I know that it’s a very fragile balance.

“Healthcare is a human right, and it’s not something that should just be taken away because someone has a pre-existing condition.”

The ACA also stipulates that insurance companies cannot charge patients more for coverage if they have a pre-existing condition. Before the law was implemented, insurers could also refuse potential enrollees for using certain medications, such as anti-coagulants, or working in high risk fields, such as mining or logging — considerations that were not included in the analysis.

A section of the Kaiser Family Foundation's analysis lists occupations that were once grounds for denial of coverage.
Credit Kaiser Family Foundation
A section of the Kaiser Family Foundation's analysis lists occupations that were once grounds for denial of coverage.

Though President-elect Donald Trump has expressed support for the ACA’s requirement to cover pre-existing conditions, health policy experts say the protection is unsustainable without the provisions of the law that push healthy people into the risk pool, like the individual mandate.

Follow Durrie on Twitter: @durrieB