Prospect of ACA repeal worries woman with congenital condition

February 15, 2017


Megan Burkett underwent her first heart valve replacement surgery at the tender age of 14 months. When she was 23, a surgeon replaced her prosthetic valve with a human cadaver valve. A few months later, she had a cardioverter defibrillator with a pacemaker feature implanted in her chest. On odd occasions, she can feel it regulating her heartbeat.

Megan Burkett celebrates at her Roaring Twenties-themed birthday party.

Congenital heart disease has not slowed her down, but the 31-year-old Burkett says her need to maintain good health insurance coverage continues to influence her life choices. Now, she faces the prospect that Congress will repeal the Affordable Care Act without a replacement law in place to continue coverage protections for individuals with preexisting conditions. That safeguard had been a hallmark of the ACA law. "I'm terrified," she says. "I have to get a job with benefits — I have to," she says. That's proved very challenging.

Eight years post-surgery, Burkett has an associate's degree, a paralegal certificate, and a full-time job as a paralegal. She is taking classes to earn a bachelor's degree, principally to qualify her for a job with a large firm or corporation, one where she'll have guaranteed health benefits. Burkett has had employment-based insurance of her own only once in her working life and then only for three months. (She was on her father's health insurance until her mid-20s, and he heavily subsidized her share of the premium when she required coverage under the Consolidated Budget Reconciliation Act.) Like many cash-strapped millennials, she moved home several times in her 20s. She lived with her mother or her father and stepmother in the St. Louis metro area to save money and pay for health insurance premiums.

Last April, she was delighted to move into an apartment in downtown St. Louis. A month later, her financial plan hit a hitch when her employer unexpectedly dropped insurance coverage for his employees. Burkett had gone on that plan in March of 2016.

She had bought subsidized coverage through in 2014 and 2015 as an Illinois resident, and she went back to the exchange when she lost her workplace coverage. The generous coverage plan she started out with was no longer available. The replacement slate of marketplace products carried high deductibles that made coverage unaffordable and less valuable to her. In addition to the premium, Burkett says she would have had to pay out of pocket for a $2,400 annual visit to her cardiologist, $1,000 in laboratory fees, and a $2,000 annual visit to her electrophysiologist and still would not have reached her deductible.

"I went a couple of months without insurance" last year, she says. It was the only time in her life she'd been uninsured. Her mother, father and stepmother were unaware of her decision. When her prescriptions ran out, she went without beta-blocker and blood pressure medication for a month. "I didn't know how expensive they were, and I didn't want to find out," she says. "I don't know why I did this because my parents would have just paid for it. Then I told my mom, she was appalled." Her mother paid for the generic prescriptions until Burkett found a new policy.

She'd established residency in Missouri and found a plan on that costs her $166 per month. She qualifies for a $125 a month tax credit. "That's huge," she says of the tax credit, "if it went away, I'd have to ask my mom to help me with groceries." The plan has a $1,900 deductible. "That would be high for a lot of people my age, but I will easily reach that by May," she says.

"Without the Affordable Care Act, I would still be living at home," she says.



Copyright © 2017 by the Catholic Health Association of the United States
For reprint permission, contact Betty Crosby or call (314) 253-3490.

Copyright © 2017 by the Catholic Health Association of the United States

For reprint permission, contact Betty Crosby or call (314) 253-3490.