When I first got diagnosed with Scleroderma in the summer of 2020, I was determined it wouldn’t slow me down, but I was really worried about the cost. Scleroderma is a rare autoimmune disease affecting the joints and other organs of the body.
Living with a chronic illness at 17 has given me a crash-course into the high costs of the US health care system and inspired me to take action on the issue of universal health care. Even with health insurance, health care is costly. More concerning for me was how I might be able to afford health insurance as a young adult.
My mom reassured me that the cost was manageable because our family had health insurance. Still, concerns about college rose because going out of state meant sacrificing my current health insurance. I discovered how much insurance benefits me and my family.
I researched the cost of my doctor’s appointments with and without insurance based on three visits in December 2020.
I have insurance through Kaiser Permanente, and in this case, they cover a substantial amount of my medical cost. I am on my mother’s plan through Fletcher Miller School, where she’s a teacher. I have a deductible of $3,500 that I will reach at the end of the year. From there, my mother pays $587.97 a month, while the school she works at covers all of the additional cost. If the $3,500 dollars was broken up into monthly payments, then my medical appointments in December would cost approximately $879.64. For an entire year of medical costs, my family pays $10,555.68. While that seems expensive, the cost without insurance is much worse.
I have regular checkups with my GI doctor and my rheumatology doctor every three months. These routine appointments are non-invasive and are designed to be short and sweet. It feels like a checkup with a primary care physician. The only difference is the work is much more targeted to my hands, stomach, esophagus, and feet which are all affected by Scleroderma. Still, unlike primary care visits, these appointments cost much more than a $25 copay, especially without insurance. People paying out of pocket lose $270 dollars for a single check up, much more than those covered as I am.
In preparation for a procedure, I got a COVID-19 test to ensure it was safe to be operated on. For many Americans, COVID-19 tests are free with insurance, as it was for me. Kaiser covered the test at Children’s Hospital. Without insurance, a COVID test at Children’s costs $195. I also saw similar prices in Arizona, when I went there due to a family emergency. Kaiser insurance only covers in-state appointments and routine care. When my family and I were planning to get tested in Ariz., we found out it would cost $200 each. These steep prices were not the slightest bit affordable; luckily we were able to find a free testing site for everyone, even without insurance. Depending on who offers the service, COVID-19 testing can be unaffordable for those without insurance.
For the actual procedure, a one-time operation, I would be put under anesthesia. My esophagus is much smaller than the average person’s because of the Sceldorma. In the procedure, the doctors widen my esophagus and get skin samples of my organs. This procedure cost next to nothing for me. Without insurance, a person would have to pay $8,410 for the same procedure. At such outrageous costs, paying out of pocket is very unaffordable for Americans.
A universal health care system would help my own medical costs, but more so those paying out of pocket.
