Before the ACA My Health Insurance Was Junk (by Amanda Upton)

Amanda Upton (l) and her family. [image description: From left to right, a mom, a young daughter, a dad, and another young daughter, all with colorful t-shirts, light hair, and each wearing a face mask, pose outside.]

I am the mom to two wonderful daughters who love to pretend to be princesses and fairies. They love spending time with friends and are two of the most compassionate people I know. Some of that compassion for others comes out of their empathy and life experiences. While we are still searching for the name of their genetic disorder, their symptoms tell us that multiple body systems need extra support with things like feeding tubes, oxygen, leg braces, and most recently an intravenous infusion port for my oldest, all to support their bodies with low muscle tone and dysautonomia symptoms. 

My kids have been covered under ACA for their entire lives; however, part of why I’m so passionate about making sure the law remains in place for them is because I had to deal with health insurance before the ACA went into effect. 

I married my high school sweetheart in college. We had always been under our parents’ employer-based insurance, so it was our first time buying insurance on our own. I had been diagnosed with asthma and ovarian cysts. My husband had an exercise-induced asthma diagnosis when he was a kid, but no issues with it as an adult. On the other hand, in the year before our wedding, I had an asthma attack that landed me in the hospital for several days. I also ended up in the ER with a cyst that was problematic. My husband's underwriting process was fast. Mine took forever: I kept getting calls and paperwork. 

We were finally granted insurance; however, my premium was about double that of my husband's. The first time I went to the pharmacy with this policy, I was informed that the drugs Singulair and  Advair prescribed for my asthma, and birth control pills prescribed to stop my ovarian cysts would not be covered. Not because we had more to pay toward our out-of-pocket max, but because--no matter what--these would never be covered because they were considered to be treatments for pre-existing conditions. Thus, in underwriting, my insurer had written them out. 

A few months after our policy was active, I went to a walk-in clinic for a sinus infection, and later received the full bill because the visit had been denied. I called the insurance company, and they explained my policy: If any illness I had involved my reproductive system, lungs, or sinuses, it would not be covered at all, even if it had no relation to my asthma or ovarian cysts. At this point I was having some joint issues, but I felt like seeing a doctor for those concerns was not wise. I couldn't afford one more pre-existing condition if we needed to switch insurance for some reason. 

It hit a point where we made the choice to become uninsured because the policy we had would literally not pay any bill submitted to them. The insurer claimed “pre-existing condition” for everything, and we were paying hundreds of dollars per month as college students for a plan that was garbage. 

The ACA went into effect while my husband and I were still in college, and we were both able to go back onto our parents’ insurance plans. My joint issues have now been diagnosed as Ehlers-Danlos Syndrome, so I really should have done something about it then. But insurance stood in the way. My girls have more pre-existing conditions than I do, so I don't want them to be paying for junk insurance as I had to do. There’s no way that if the ACA is overturned they would be able to buy commercial insurance. They would also have very likely hit their lifetime max by now due to the amount of hospital stays and specialists they have seen. 

In the words of my seven-year-old, “The ACA is important because it keeps people alive.” She understands the reality that insurance pays for her medications and medical supplies; because those are covered, she is able to just be a kid. The fact that anyone would want to repeal the Affordable Care Act is shocking to her; her compassionate heart just does not understand why people would be OK with insurance companies not covering her and her friends. 

I do not want her generation to be in the same shoes I was in for insurance. Junk healthcare plans only help the insurance companies and take advantage of average Americans. My pre-existing conditions will always be a part of me: I believe we need healthcare in this country that cares for the whole person. If we really believe that we all are created equal, then we need our healthcare laws to reflect that. 

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Amanda Upton is a midwestern mom and a licensed teacher for children from birth to age eight in both regular and special education. After several years in the classroom, her teaching license is now being used at home to homeschool her daughters. She loves all things Disney Parks and experimenting in the kitchen. Amanda has also written several articles for Complex Child.