Aqualyn, then an 18-year-old student at Spelman College in Atlanta, saw a flash of colors — the grass and trees seemed brighter than ever before. When she tried to speak, her classmates couldn’t understand her.
“I’d had a stroke that was caused by a tumor in my heart,” said Aqualyn, who learned that her grandmother and all nine of her siblings died of stroke. “I ended up having open-heart surgery to remove the tumor and to replace the heart valve that the tumor destroyed.”
Fortunately, Aqualyn had health insurance through her mom’s plan. But since that September day more than 20 years ago, she has been one of the 122 million Americans with the “pre-existing medical condition” coverage label, making life difficult at times and devastating at others.
Aqualyn recovered from surgery and graduated from Spelman. She earned an MBA, started working and then in 2005 left her job at a large employer to pursue the dream of owning her own business. She knew it would be tough, but she wanted more out of life.
Aqualyn got health coverage through her graduate school’s alumni program. Later that year, after emergency gall bladder surgery and complications due to a disorder that causes her blood to clot more easily, her insurer dropped her coverage.
She was left with $50,000 of medical bills during her first year in business.
“Do you know how hard it is for a sick person to fight this?” she said.
But fight she did. She was “thankful yet disheartened” that the hospital that cared for her wrote off a big part of the bill.
“If the Affordable Care Act had been in place, it would have been against the law for my insurer to drop me from coverage,” she said.
She won that battle, only to fight others, going without coverage as she searched fruitlessly for an insurer who was willing to cover her with a pre-existing condition at a cost she could afford.
In 2011, she joined a company that provided more affordable coverage, but the job didn’t pan out as planned, and she was once again without coverage. She could’ve received coverage from COBRA, but the $600 monthly premiums eliminated that option.
Not only did she worry about her pre-existing condition, she feared anything new that could’ve happened.
“It altered how much risk I was willing to take,” she said. “I had to weigh the importance of leaving the house for a job opportunity or just to hang out with my friends.”
That cautiousness took a toll. Normally positive and optimistic, she described that time as living life with the mute button pushed.
After again being uninsured, this time for six months, Aqualyn qualified for the Pre-Existing Condition Insurance Plan, which was created by the Affordable Care Act as a bridge until coverage through the Health Insurance Marketplaces began Oct. 1. (The plan, also known as PCIP, has since closed to new enrollees.)
Her PCIP coverage started in April. In May, her world was rocked again — this time with a crushing pain. She had a heart attack, which was complicated by an allergic reaction to the treatment, stretching her hospital stay to a week.
“I’m incredibly grateful that, thanks to the Affordable Care Act, I had affordable insurance coverage through PCIP,” said Aqualyn, now a self-employed marketing professional.
She believes the coverage may have helped save her life.
“Otherwise the stress of having no coverage during my heart attack may have contributed the final, fatal blow,” she said.
Aqualyn’s journey has made her a passionate voice for reform.
In September she testified before Congress. She has also shared her story on NPR and other news programs.
This month, Aqualyn will enroll in the Health Insurance Marketplace in her home state of Virginia.
“It is difficult to express just how wonderful it is to no longer have to worry about being denied coverage due to my pre-existing conditions, being charged exorbitant premiums that I can’t afford or having my coverage dropped if I need another hospital stay,” she said.
She might even regain a little of the spirit of that college freshman who was full of dreams for the future, full steam ahead.
“I can become Aqualyn again,” she said. “I don’t have to be that person who’s living on mute.”
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