Health Insurance from the “Genetic Pre-Existing Condition” Perspective (Part I)

Health insurance. I dislike thinking about it at all, honestly. I moved to Colorado from Wisconsin a few months ago, and for the first time in quite a long time, I have to worry about health insurance. Not that I didn’t worry about it before, but my old plan was fairly affordable, we had a general idea of how much we would spend per year on healthcare, and we were easily able to add that into the budget. The tables have turned since the move, and it’s no one’s fault — it just is.

I have a genetic disease called Cystic Fibrosis (CF). It is a genetic mutation that you can only “get” by being born with it, and it’s recessive, so I had to get one gene mutation from my mom, and one from my dad. My sister does not have the disease, though she could be a carrier (meaning if her genes combined with the right genes and those genes produced offspring, their offspring could possibly have the disease). So, there was absolutely nothing I could do about it — I’m stuck with it, and I deal with it.

I was diagnosed at 16, which was unusual, but is becoming more common as they discover that there are several different gene mutations that can cause the disease. I have had sinus infections my entire life, for as long as I can remember, but no one thought to check for CF until I was 16 and was sent to an Ear, Nose, and Throat doctor who suggested I get tested for the disease. Once tested, I found out I had the disease and the next steps were figuring out what to do about it. Luckily, at that point, I was in fairly good health and there weren’t many changes to my everyday life. The biggest changes at that time were simply more doctor visits, which wasn’t a big deal because my mom had great health insurance coverage through her employer.

Up until I reached the age of about 23, I was able to be covered under my mom’s insurance because I was still in college. Good thing, too, because I was hospitalized three different times during college and put on IV antibiotics for two weeks straight each time. Each hospital visit involves not only having to have a room and bed (expensive in itself!), but it also involves the medications, the nurses, the doctors, the respiratory therapists, the CNA’s, the pic line (a large IV that gets put in your upper arm instead of your smaller veins near the hands), the food, etc, etc. The list of costs is endless. My parents did not receive a single bill for any of those hospital visits because each one was fully covered. In case you are wondering, each individual hospital stay cost more than my dad’s kidney transplant.

Fortunately, legislation had been passed prior to me finishing school that allowed me to stay on my mom’s health insurance plan through school. However, once I was done with school, I was on my own. I was forced to look for full-time jobs after graduation that provided health insurance because I knew I would immediately be declined if I tried to purchase my own insurance. I must admit, my options were already limited since I graduated at the worst possible time for college students in years. Then, my options were limited further by my need for adequate health insurance. Without it, I couldn’t afford to keep myself healthy.

I did manage to find a job that provided health insurance, even though it wasn’t remotely close to what I wanted to do as a career. In fact, if it were up to me, I would have started my own business. However, that was not an option even if I wanted to because I needed a job that provided insurance. Maybe someday I could start my own business, if I married someone who had decent insurance. Who wants to plan that though? What if I found someone who also wanted to have a business? What if his job didn’t provide benefits either? What if I didn’t want to get married? My dream could be squashed flat.

I’ve been very lucky since I graduated college in that I have been able to find work that provided health insurance. I haven’t enjoyed any of the previous jobs I’ve had (though I do very much love my job now). I could be good at them, but I didn’t enjoy them because I wasn’t doing what I wanted to do, I was doing what I had to do. I got married a little over a year ago, and we were lucky then as well that I had insurance and we could be covered under the same plan. But then, everything changed.

To be continued

About Jamie Schwoerer

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