KANSAS CITY, Mo. - The Fullers are just adjusting to life with a child who has cystic fibrosis. Emerson Fuller was born Oct. 26, 2015 and diagnosed with the genetic disease three weeks later.
Life is different now. No shoes in the house, everyone washes their hands and uses sanitizer religiously. No smokers or sick people can come over for a visit. Mom Elizabeth has given up her career to take care of their 14-month-old son. Most of all, health care costs for their family have gone up dramatically.
"You know it was immediately like how are we going to afford keeping our kid alive basically," Elizabeth said of the diagnosis. "It wasn't until later that we started realizing it's not only fatal, but it's also really, really expensive."
Emerson's medications are about $1000 a month, covered by his insurance through the Affordable Care Act.
"You get this diagnosis and you feel like you're sinking because your whole life has gone from healthy, happy kids to this whole new world that you didn't even know existed and someone hands you a life preserver and is like here, you're going to be fine and you're going to stay afloat, just hold onto this and now it's like someone is wanting to take that away from us and it feels like we're sinking all over again," Elizabeth shared.
Critics argue the ACA, also known as Obamacare, is also expensive with high premiums and tax increases.
"I get it but it's so crushing because their friends are still relatively healthy compared to what we have to deal with," Elizabeth shared. "I understand they can't afford it. I understand they have the penalties that they get every year but their lives aren't depending on that medicine. Their families aren't depending on the ACA to keep them out of bankruptcy."
Dr. K. Baptiste-Edward, Swope Health Services Outreach and Enrollment Manager, said, "There may have been an increase in some premiums but the advance premium tax credits kind of soften that blow."
Her team alone has enrolled 18,000 people in the Kansas City metro since the ACA rollout. Dr. Baptiste-Edward said, "I know how it worked for so many people. I've seen people walk through the doors with pre-existing conditions and they were unable to get health insurance for years."
Tuesday, the Congressional Budget Office released a report showing what would happen if Congress eliminated tax penalties for the uninsured, money for Medicaid expansion and subsidies for low-income families to get private insurance.
As a result, 18 million people would lose their health insurance in the first year. A total of 32 million people would lose their coverage in 10 years.
Republicans are firing back saying the CBO report isn't complete and doesn't give a full picture. No replacement plan has been proposed or analyzed yet.
Dr. Baptiste-Edward says she wants the ACA to stay because, "I've seen so many broken, broken people. I've seen so many people bankrupt because of high medical bills and to be able to take that off of them is very rewarding."
"It's so necessary, it's so vital for families like ours. Families that have pre-existing conditions or long-term, serious health needs," Elizabeth said. "I don't want to lose my kid you know? I don't want to ever reach a point where his life is in the balance."
Swope Health Central is extending its hours to help people who want to enroll in the ACA. Call 816-599-5590 to make an appointment.