This is the first in a series about the stories of West Virginians who could be negatively affected by the ACA repeal. The first narrative is by Mina Schultz, a tireless health care advocate whose life and family well-being was saved by the ACA.
Six years ago, I never gave a second thought to health insurance. Or even a first thought. I was twenty-five, finishing my graduate program at the University of Missouri, and preparing to enter the Peace Corps. I had student insurance, but it would end upon graduation. I would have about nine months without coverage before my Peace Corps service began. I didn’t give it much thought; I was young, healthy, and didn’t go to the doctor much. My parents foresaw the gap in coverage and told me about the Affordable Care Act, a new law that would allow me to stay on their coverage until I turned 26. I said, sure, sign me up, and joined their plan.
The pain started in April 2011, about a month before graduation. I wrapped my knee, iced it, and took a break from running for a while. After graduation, I was planning on taking a temporary job in rural Montana to pay the bills until my Peace Corps service started. I was still having pain, and not wanting to end up in the middle of nowhere Montana with a torn ligament, I scheduled an MRI. As I left the imaging center, I jokingly asked the technicians if they’d seen anything good in there. Their reply: “You’ll be glad you came in.”
I will never forget the phone call when the doctor said, “Ms. Schultz, it appears you have a tumor.” The tumor was osteosarcoma, an aggressive bone cancer usually found in children and adolescents. I endured 5 surgeries, including a total knee replacement, and 9 rounds of chemotherapy (each involving 3 doses of chemo, so 27 doses all together) over the course of a year.
That year was harder on my family than it was on me. They had to watch helplessly as I was persistently drugged and injected, as I relearned to walk. My sister, then a high school senior, helped me fix my hair one last time before it all fell out. She spent many nights in my hospital room doing homework. But there is a silver lining: we didn’t go bankrupt. Those six hours of knee and bone replacement surgery cost more than my mother’s annual salary at a university. My first week of chemo cost almost as much as her house. One of my injections to boost my immune system after chemo cost several thousand dollars. Because of the ACA, my family made it through my cancer with emotional scars, but without financial devastation. I don’t know how we would have afforded my lifesaving treatment had I chosen to forego coverage because I was 25 and thought I was healthy. I think about it every day.
Until recently, I worked as an enrollment assister in rural north central West Virginia. Because I believe everyone has the right to the access and care that I received when I was sick, I helped my community members navigate the Health Insurance Marketplace, expanded Medicaid, and the ACA in general. No one should have to experience what I did, but especially no one should go bankrupt because they want to survive an illness. While I am coming up on five-years cancer free, I have secondary conditions as a result of treatment. I take medications to manage my health. Because of my previous diagnosis and resulting side effects, I would be considered uninsurable without the ACA requirement to cover those of us with pre-existing conditions.
Because of the threat to the law, I had to find a new job, one that offered me benefits so that I can’t be denied coverage, and hopefully one that won’t cap my benefits. I loved my job as an enrollment assister, but I knew I wouldn’t be able to afford high risk pool coverage under the AHCA. I take pride in being able to cover my own expenses, and I fear that I will have to rely on my community to care for me if I no longer have the ACA to protect me. I’m just trying to do my best, but I feel like my congressmen and women are trying to take away my autonomy by taking my care. I thought government was supposed to protect its people. Please protect me by keeping the ACA in place, so I can continue to have access to the care I need to maintain my health and contribute to my community.