On Preexisting Conditions

I have a preexisting condition. Two of them, actually. I am, additionally, a cancer survivor. So, if you’ve ever had to use health insurance to pay for anything more than a few hundred bucks, you can imagine how happy I was when the Affordable Care Act passed. At the time, I was employed by a medium-sized library system and had okay-but-not-great insurance provided by my employer – which was a vast improvement over where I had been just a few years prior.

At age 24, I had aged off of my parents’ insurance. I was a grad student at the time, taking a full course load and teaching freshman English, so my parents shopped around for insurance a little bit on my behalf. They talked to their insurance agent (they still have one of those), who told them I basically had zero options. The insurance companies he scoped out wouldn’t take me because of my pre-existing conditions. My only option, really, was COBRA, which with my dad’s insurance cost over $500 a month. I was a graduate student with an assistantship, no other job, no extra time to take on another job, and $500 was over half of my monthly budget; I might have been able to pay my rent with the rest of my budget, but that would have been it. No food for me, let alone electricity or running water. But, because my parents are great, they paid for my health insurance so I could finish my graduate classes.

I should add an aside here. Lost of people go without insurance coverage. More of them did then, in 2004, but some still do now. The thing about going without insurance back then was that if I had a gap in my coverage, then when I did get insurance again (through an employer, obviously, because that was my only option, unless I married for insurance – and trust me, the thought did cross my mind), my pre-existing conditions wouldn’t be covered immediately. The longest I had heard of insurance companies making you wait to cover your pre-existing conditions was a year. But, consider that: a full year of paying an insurance premium with no help with the out-of-pocket cost of my medications, which were at the time $150 – $200. So, basically, paying that insurance premium would only help me if I became sick with something new for that year. But I would have to do it if I ever wanted to be insured again, because insurance companies exist to make profits, and the people in charge of them seem to get greedier every year.

So, anyway, I had insurance through COBRA, and thank goodness, too, because six months after I aged off of my parents’ plan, I got a cancer diagnosis. The nurse practitioner in my gynecologist’s office caught it early (which should spawn another post on one of the MANY, MANY reasons we need affordable gynecological care for women at places like Planned Parenthood) and it was removed fairly easily. I only had to go through radiation – no chemo. But, still – the treatment cost thousands of dollars, even with insurance. I had follow-up MRIs and PET scans for years.

Now, while all of this was going on, I was pulling out my insurance card a lot. And I remember seeing, in small print on at the bottom of the back of the card, a line that said my lifetime limit for care was (say it in Dr. Evil’s voice) one million dollars!

Now, one million dollars is a lot. But how much would it be, really, if my awesome surgeon hadn’t gotten all the cancer on the first try? Or if my cancer came back but wasn’t detected as quickly as it was the first time? Or if, say, I developed yet another chronic illness that required even more expensive medication to control?

Here’s another thing about my cancer. I had thyroid cancer, which, on the up side (if there is a plus side to cancer) is one of the most treatable forms. People still die from it, sure, but the survival rate for stage I is nearly 100% (of course, once you get to stage IV, it’s under 30%, but like I said, my nurse practitioner caught it super early). On the down side, having the cancer surgically removed meant having my entire thyroid removed, which spurred hypothyroidism – which is controlled by medication that I will take for the rest of my life. However, the radiation I had to have a few months later required me to go off my thyroid medication, which caused a state of hypothyroidism – which led to symptoms of depression and anxiety.

So now imagine looking at that $1 million lifetime limit while being clinically depressed. Imagine finding out, hypothetically, that your cancer did come back and further treatment was needed, adding up to hundreds of thousands of dollars – maybe even up to a million. Consider the impact all those doctor visits, hospital stays, and financial strain would have on your family and friends. Things get pretty grim pretty fast when you let yourself fall down that rabbit hole. You imagine your parents selling your family home to pay your medical bills (I didn’t know who Joe Biden was at that point in my life, but he nearly reached that point when his son Beau was fighting cancer). Depression is a bitch. It will tell you that you are not worth all that strife. So, the only logical conclusion I came up with when those thoughts entered my mind was that I would have to make sure I didn’t live long enough to see any of that come to pass.

This was nearly twelve years ago. Obviously, things turned out okay for me. One little round of radiation was all it took, and after a decade of monitoring by an endocrinologist, I now have my bloodwork and monitoring done by my GP. I have an amazing family and wonderful friends who talked me through the rough patches (this was before cell phones offered unlimited minutes, so I racked up lots of overages). I got at least a hundred cards in the mail. Friends sent me fun things. Two of my friends from college, also poor graduate students, got together and bought me a purple feather boa. I still have it.

Very few people know the full story here. I rarely talk about it. I am telling it now so that you understand that not everyone who relies on the ACA is jobless and living on welfare. Most aren’t. Many who rely on the ACA’s protections don’t even have insurance they got on the Marketplace. But the difficulty of not having access to insurance forever changed the trajectory of my life. Don’t get me wrong – I love my life. But in my early twenties, my plan was to finish my master’s degree and possibly work as an adjunct before going on for a PhD. Adjunct professors generally often don’t get full benefits, especially not health care, and they especially didn’t in 2005. I could only stay on COBRA for maybe three and up to a maximum of five years, and like I said, it was darn expensive. I happened upon a job working as a florist in a grocery store and took it not because it was something I wanted to do, but rather because it was a job that would let me qualify for benefits after I had been working there for a year (thank you, UFCW). At the time, it was the best option I had.

Fortunately, I found a job in a public library system before that year was up and ended up with a much more rewarding full-time job with benefits. A couple years later, someone named Barack Obama announced his candidacy for President and ran on a platform that included health care reform. My (now) husband and I campaigned for him. A couple years after that, the legislation that really would have helped me in 2005 was enacted, and I stopped worrying so much about what might happen if I lost my job (which was a distinct possibility in 2009, before the ACA, when Ohio severely cut library funding and many of my colleagues were laid off). I got married and had babies. Both my pregnancies were high risk, but I got all the care I needed, thanks to the ACA. I honestly thought all my worries about being financially devastated because of the high cost of my health care was over.

At the moment, I feel like I’m stuck back in 2005 all over again.