Amber is a 30-year-old mother of two from Fair Grove, MO, which is located 10 miles north of Springfield. She has lived there her whole life. At age 15, she was diagnosed with Crohn’s Disease, an illness that used to be manageable, but has gotten progressively worse over the years. “My Crohn’s deteriorates my health faster than FMLA or LOA can renew,” she says, explaining the government protection program around annual allowed medical leave from work. When she was no longer physically able to work full-time, she started an independent cleaning business so she could work on her own terms. This has also made it possible for her to home-school and spend more time with her children.
Amber is a self-described libertarian, and had not been interested in applying for Medicaid in the past. Until recently, she was able to keep her symptoms under control with herbal medicine and remedies such as hyperbaric oxygen therapy, but as they worsened, she “got to this place of desperation,” and feeling “backed into a corner,” she decided to apply for Medicaid. However, she found out soon-after, that she didn’t qualify. Her income is over $388 per month—Missouri’s income limit for Medicaid qualification, and because Missouri hasn’t expanded Medicaid, she makes too much to qualify for the program but too little to be able to go on the Marketplace. After going through the mental energy of altering her perceptions of the program and finally deciding to apply, she recalls going through a “grieving period” when she realized that if she, as someone who in her eyes has, “done everything right,” can’t qualify, “how could anyone else?”
Despite this, she says she’s been “very blessed lately.” As her health has continued to ail her, she’s become very tired, overwhelmed, and willing to try prescription medications. When she found out Humira, an immunosuppressant, was $80,000 a year, she was scared she’d never be able to afford it because she didn’t have insurance, but she was able to get it for free through a program the drug manufacturer has. Mercy Hospital has also been able to forgive her medical debt through a charitable care program for uninsured patients, which has been extremely helpful, financially. However, that only applies in certain scenarios and Humira has complications and can leave her feeling sick and in need of more medical attention. She has wondered at times how she can keep going avoiding medical care because of the cost.
Though she is grateful for what she has, she is frustrated that she can’t be “more independent.” She lives with her parents, and because she has joint-custody with her ex-husband, she won’t be able to move out-state for at least fourteen years. “I’m stuck here,” she says. She knows she is trying as hard as she can, yet she still feels helpless at times, especially as she has realized the MO legislature is resistant to Medicaid expansion. “I feel like the Missouri state government doesn’t care about the people here. I don’t feel like they are in touch with what is going on because they don’t see the people who are affected. They know about the gap but don’t care.”
Though she doesn’t identify as “a liberal,” she feels like she has gone through a change-of-heart and sees that “people have their beliefs because of their experiences”. She speaks from personal experience as someone living in Springfield, one of the poorest areas in the country, when she says that she has realized people who have fallen on hard times “just need a little help.” She has an astute analysis of the dynamics between government and rural areas. “When you have more access to technology,” she says, “it gives you more opportunities to listen to more perspectives that aren’t conservative talk radio. You can do your own research online and form your own opinions. People in poverty are reliant and the government relies on them being poor…it’s easier to feed them ideas”. She also talks about how millennials aren’t heard, that their stories aren’t taken seriously. She wants her story to be out there so other people in the Medicaid Gap can connect and know that they aren’t alone