Thanks to the ACA, I'm Not Concerned About Dying as a Result of a Clerical Error

Adrian Waller
Wichita, KS
United States

When I was 19, I got married to the love of my life, who I'm still married to today, seven years later. In 2009, we were still experiencing the effects of the greatest recession the country has seen in my short lifetime. Because the ACA had not been passed, I lost my insurance upon marriage, because the provision for children to stay on parents' insurance until age 26 had not passed. Additionally, I suffer from several chronic, rare diseases, so even if I wanted to find my own insurance, as a full-time student working a work-study job, affording insurance (after hiked rates because of pre-existing conditions) would've been impossible. Instead, I managed my daily life, getting sicker and sicker each day.

It wasn't until I was 21, and convinced I'd be dead in a few years, that I met a doctor who ran a concierge medicine practice. This doctor helped me to find loopholes and to navigate the healthcare system so I'd be able to get the life-saving medications I couldn't afford. This was a drastic change from paying out-of-pocket (when I could occasionally afford the $300+ appointment) for a specialist who basically informed me I had no options except to move to Mexico or Canada. The concierge doctor eventually helped me to apply for disability, which I qualified for, only because I had become so sick I could barely function in my daily life due to the draconian healthcare laws present when I was married.

I qualified for disability insurance, which I'm still on today, 6 years later. I have about 30% lung function, which sounds drastic, but is dramatically better than the <25% I struggled with in college when I had no insurance. About 3 years into having Medicaid (through SSI), I lost my insurance again because of some errors both on my part and the part of the workers who kept in contact with me regarding SSI. This forced me into the ACA Marketplace for a full year. It was (obviously) more expensive than Medicaid, but it was an option I didn't have before. If I didn't have that available, I don't know that I would've survived the year; I don't know how much more damage from chronic infections my lungs can take. Thankfully, that wasn't the case. I resumed being on Medicaid after that year, and I realize that at any point I could lose it again.

Thanks to the ACA, I'm not concerned about dying as a result of a clerical error on my part or on the part of someone working for the government. That is changing, though, and that scares me. Please do all you can to support keeping the ACA, and especially its provisions for people with pre-existing conditions.