Fast facts (if you don’t have time to read the full post): Tomorrow is my second to last chemo! This week is week 19 of chemotherapy and it will be my 15th treatment! It is the first time during treatment that I literally do not want to go to chemo tomorrow. I want to see my nurse friends, but I do not want to get treatment. I have zero interest in feeling worse. And yet, I must go. But I don’t want to go and I want everyone to know that I have liked going up until last Friday and now I am done feeling like shit. How is it that one can like going to chemo? I mean, the snacks are a huge draw. And I like destroying cancer. But now my body is a sad potato and I want to be done.
TO THE LONG VERSION!
Can you believe I have been doing this cancer bullshit for 150 days?! I feel like I need some froyo to celebrate how far I’ve come but also to just cool down because it is HOT HOT HOT outside today. I get extra hot these days because of menopause. I am a spicy little baldie. I am not allowed to be in the sun which is sad because I am meant to be outside frolicking with the bees in the sunflowers. Alas, I sit in my air conditioning and watch my tomato plants crisp up and wait for the sun to go down to water them. I can go outside; I just need to sunscreen it up and not stay out too long. The easiest solution most days is to just stay indoors to reduce the risk of major burning.
A couple of months ago I asked folks what they wanted me to talk about in my blog. One of the most requested topics was how much it costs to have cancer. I wanted to provide a little snapshot of my personal experience navigating the insurance waters but wanted to set some expectations for folks as we explore this conversation. The price of having cancer is high. Financially, emotionally, and physically you have to pay and sacrifice so much. Chronic illness is a burden. I am extremely privileged to have insurance coverage provided by my employer that is affordable and has really awesome coverage. I hate that I had to find out how “awesome” my insurance is because of this experience, but I cannot imagine my experience without it. As I share a bit about this, please consider the following variables that impact my claims and what I have to pay: how much the hospital charges for services, how much they bill insurance, and how much I pay before and after deductibles and meeting my out of pocket maximum and “discounts.” Every insurance and their exchange with a provider/hospital is different. I want to be clear that I am not an insurance expert, so I cannot speak to anyone else’s experience but my own. I also know very little about insurance and have been learning during this journey. Just being honest. OKAY! Let’s roll.
As of today, July 20, this is what my insurance claim portal currently reflects. My insurance has been billed $128,221! This includes everything I have experienced the last 150 days including scans, doctor appointments, therapy, massages, infusions, blood work, and anything else I forgot to list. My deductible is $250 and my out of pocket maximum is $2,000. I met my out of pocket fairly quickly. And I am lucky that my insurance will pay 100% of my claims after I meet my out of pocket. For the next five years, assuming I keep this job and this insurance, I will continue to pay two grand out of pocket which that is a burden I will need to budget for moving forward, but it could be a lot worse. Again, shout out to my insurance for being decent.
When I dig further into my claims inbox, I am able to see a bit more detail. It looks like my weekly infusions are $1,861.60 which includes my chemo and premeds. When I look back at the red devil chemos, my claims show that the amount billed is for $5,779 but my discounted rate is $3,993.84! (However, it looks like that is not the consistent rate I was charged for every red devil chemo.) I wonder if I could get a punch card for chemo? Buy five chemos, get one free???
And then I have random claims for when I meet with my oncologist or see someone else. Those charges seem to vary. On my most recent visit I was charged $117 to see my oncologist but was charged $330 for a visit in May. I don’t know what the variance is or why. My lab work seems to be fairly consistent at $145 weekly. Those claims are always processed relatively quickly. Some of my other claims like chemo and scans take a bit to process and hit my account. Of course, my favorite Zoladex injection comes in at a hot $557. I need those once a month for the next five years so those will meet my out of pocket maximum fairly quickly.
I could go on and on but clearly there are some things happening behind the scenes I don’t understand and I am in a privileged position not needing to fully understand because of the coverage my insurance provides. I expect to hit over $150,000 in claims this year alone. I still have two chemos left, scans, surgery, radiation, more scans, and more lab work to come. I would not be surprised if I even hit $175,000.
For AYAs (adolescent and young adults) going through active treatment, one of the biggest barriers can be insurance because access to insurance is oftentimes tied with employment or they age out of their parents’ insurance. And some folks don’t have insurance period. Access to insurance is not unique to AYAs, but it is an issue when decent insurance is tied to career opportunities. The last thing that folks need when making life saving decisions about their health is insurance (or lack thereof) preventing them from receiving care, feeling like receiving care will leave them financially doomed, or that they cannot take leave from work in fear of losing benefits to focus on their treatment.
I recognize there are resources and grants that exist in the world to help support folks who lack insurance or need additional assistance, and that is great! However, those resources are finite. And don’t get me started on the equity issue of folks of color are less likely to have access to insurance and/or employment options that have great insurance benefits, furthering the divide between white folks and people of color. And even with insurance, navigating the jargon and issues when the hospital and insurance aren’t communicating right is a heavy burden on its own. Why isn’t “Insurance 101” a class we take at some point in our lives like in highschool? What’s a claim? What’s a deducible? It’s a privilege to even know those terms if you’re lucky enough to have insurance and be exposed to that language.
I could write a whole academic paper on this issue (and I recognize I skipped over a lot of details and other important things tied to insurance) but because I am really exhausted, I don’t have capacity at this time. But in short, I think simply stating that our healthcare system needs a full makeover and that healthcare should be free and a right to all is enough for now. Fuck capitalism and let’s favor human life more. Fuck for-profit health systems that benefit from the sick. You don’t need to have a chronic illness to know that choosing to receive care for any illness shouldn’t be decided on whether or not you (and/or your family) can afford it.
I recognize and want to reiterate that I am extremely privileged to have insurance that has supported my cancer treatment and folks who have held fundraisers in my honor to help offset out of pocket expenses. I have had an amazing support system in that way and I realize that not everyone has that network of support. I won’t be anchored down by medical debt any time soon and that is a blessing and has allowed me to focus my attention on worrying about healing and surviving. I hope to use this experience to advocate at some point at the state and national level for changes in our healthcare system. That is a big task and probably an impossible one, but what else can we do? People shouldn’t have to wait until they are experiencing a medical crisis in our healthcare system to know and be sympathetic and want to change the existing system. We all need access to equitable healthcare. It isn’t working for everyone and until it does, it needs to be dismantled.
Today’s song lyrics of the day are brought to you by Michael Andrews.
“And I find it kind of funny
I find it kind of sad
The dreams in which I’m dying
Are the best I’ve ever had
I find it hard to tell you
I find it hard to take
When people run in circles it’s a very, very
Mad world, mad world”
madisonhatescancer 