By JULIE MINDA
When Kellie Pearson of Olivehurst, Calif., reflects on the nearly two decades she went without health insurance coverage while also struggling with a life-threatening heart condition, she is most saddened by the collateral damage done to her loved ones.
Her daughter and stepson were in early elementary school in the late 1990s when Pearson began having debilitating arrhythmias related to a genetic heart disease. Pearson recalls now how the children often would check on her when she was napping, to make sure she was still alive. She remembers multiple times when she would have a particularly frightening cardiac episode — she and her husband would load the children up in the car and drive to the closest emergency room. They'd sit in the parking lot until Pearson's symptoms had escalated to the point that she could be seen in the ER. If her symptoms were not "bad enough," she would not be eligible for admission and stabilization.
"I wish my kids hadn't had to go through all of that" stress and trauma, says Pearson, now age 51.
Pearson and her husband own and run a small prune farm. She says they always have been part of the "working poor." They make too much money to qualify for California's Medi-Cal Medicaid program.
The family was insured through the individual insurance market in the 1990s. Pearson was healthy then. But in 1997, Pearson collapsed at home and was rushed to the ER, where she received a cardioversion for an arrhythmia, or irregular heartbeat. With a cardioversion, a clinician applies an electric shock to restore a person's normal heartbeat. After the episode, Pearson's insurance company cancelled her policy, accusing her of failing to report a pre-existing heart condition when she had signed up for her policy. She says the company's claim was untrue.
Pearson says from 1997 until 2014 she was uninsurable because of the heart condition, and because she had no insurance, "no doctor would touch me." During that period, she had no preventive, primary or specialty health care — just ER care when her condition would flare up. Though she was undiagnosed while uninsured, she since has learned she has hypertrophic obstructive cardiomyopathy. According to the American Heart Association, this condition occurs when heart muscle cells enlarge and cause the walls of the ventricles to thicken. This thickening can block blood flow. The heart association says people with this condition can experience chest pain, dizziness, shortness of breath, fainting, arrhythmias, and, in severe cases, cardiac arrest.
Pearson says while going untreated for the condition she regularly felt lethargic and had frequent irregular heartbeats that could quickly escalate to a cardiac episode. She feared she would go into cardiac arrest and die. Despite her health problems, she worked on the farm and at times at a second job with the Salvation Army.
In August 2013, she collapsed behind the wheel of her car and was treated in the ER once again.
Pearson was relieved when, in late 2013, she was able to enroll in insurance in the marketplace enabled by the Affordable Care Act. Her coverage went into effect in 2014. She and her husband are both insured through the marketplace, and together they receive an $800 monthly subsidy that brings their premium to about $180 per month. They have an annual deductible of $5,000.
The week her insurance plan went into effect, Pearson went to a primary care physician to have her heart checked. He said, "You are dying. You have to see a cardiologist today."
The cardiologist ran an echocardiogram and diagnosed Pearson with hypertrophic obstructive cardiomyopathy. He said he'd never seen a heart in such poor condition. "It's a miracle it didn't kill me," Pearson said of her condition.
Shortly after her diagnosis, Pearson had open heart surgery to repair the damage and to have a defibrillator implanted.
She says the treatment revitalized her. She has more energy than she's ever had in her adult life. And, for the first time in decades, she's getting a full night's sleep regularly, unlike in the past when the arrhythmias would wake her. She's doing activities she once avoided because of her heart fears, like riding horses and traveling.
Pearson requires regular heart testing and monitoring, as well as anti-arrhythmic drugs to regulate her heartbeat. Additionally, her defibrillator must be replaced in two years.
She worries about efforts to repeal the ACA, which could eliminate protections for patients with serious pre-existing conditions and stop premium subsidies that make insurance affordable for her family.
"Without insurance, I will go back to sitting in a parking lot waiting until I can go into the ER," she says.
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