So far, I have chosen to discuss psychological research and explain how it can apply to us individually, which I plan to go back to as a “format” for my articles.
However, this time I wanted to discuss something that has hit very close to home recently. I work in health care (mental health care specifically) and have always offered pro bono services to people I felt were in need or trying to better their lives, but just lost insurance or only have coverage that won’t pay me.
In my first 15 years of my career, I worked in a state hospital with the sickest of the sick who were often homeless, indigent and without family supports.
In the last twenty years, I will say that the sheer number of people who have that need has increased exponentially. I will also say that it is very clear that people of color, and specifically lower income people of color, are making up a much larger portion.
Recently, over the last six months specifically, this became very personal. I have become primary care giver and live in a home with someone going through treatments for two separate and distinct forms of cancer at the same time. And my eyes have been opened to the enormity of the problem that goes way beyond my office door.
Every week, sometimes several times a week, we were at the chemo facility. To their credit, staff and doctors often asked if we needed to see the social worker for help with medicines, copays, transportation or other expenses. We had critical illness insurance and thanks to Aflac have a buffer in the bank to cover the $200 a week copay and if insurance doesn’t cover a medication, we CAN (reluctantly) pay out of pocket $20-60 to PER PILL to help with side effects.
We KNOW we are blessed beyond words that his work has offered him unlimited time off, a sure job to return to if he beats this, and short term disability (which is about to run out) so he’s not having to balance getting work done around nausea, lethargy, chronic pain and the mental confusion that comes from “chemo brain.”
Being at the same chemo room for so many weeks, you form friendships and acquaintances with others with needles in their arms and care takers trying to keep them distracted from the poison coursing through their veins.
The CURE that makes you feel worse and worse each week. We have met some beautiful souls and know the hardships this process has taken on families, finances, and physical sense of wellbeing. More than a few times, we’ve had a conversation about someone who came in and we hear they just don’t have the money for their medicine or chemo or god forbid surgery.
He’s had three surgeries in six months and without insurance, that alone would have been over $400,000! Just for surgery – none of the other needed treatments. Our estimate, right now (not even half way through this battle) is medical costs are over a million and a half dollars and quickly rising. Now, I know that the USA is infamous for its overpriced and sometimes subpar healthcare. I understand completely when people go to Mexico or the UK or other countries. It is a fact that for the cost of a hip replacement in the US, you could go to Spain, have surgery, live for six months, learn a language, immerse yourself in a cultural experience and still spend less than in the US. So, I know we are extreme on this.
But other countries don’t even have the option of offering treatments to lower income or rural residents of their country so again, please know we are infinitely grateful for what we DO have access to and what we CAN afford to do during this process. I can’t help thinking of the people who we don’t even get to meet in the chemo room. Those who, due to finances, just choose not to treat their cancer or seek alternative or less expensive options and I wonder just how many people die every year from not having the financial resources to weather this process.
I know that income inequality is not totally based on racial lines but it clearly is a factor. I know that we, two college graduates and one of us a doctor, have trouble processing all the information we get and intellectually and emotionally understanding what is going on with the diseases. We’ve spent weeks researching options, survival rates, pros/cons and do our best to make informed choices about the next steps that are most likely to lead to good outcomes.
I cannot even imagine someone who is less knowledgeable trying to weigh those same options and weed through all of this emotional and factual data. I’m not saying it takes an advanced degree to understand all of this, but as overwhelmed as we felt, I can only imagine how much more difficult when you don’t understand cell synthesis and receptors, when you have to try to keep working through all these treatments to just keep roof over your family’s head and food on the table. I don’t want to imagine what it would be like for loved ones and care givers if they lose this battle and a two income family has to become a one income family who will be saddled with medical bills and grief at the same time.
There are so many things about cancer that are unfair… who it chooses, when, and with what outcomes. It all feels as though there is some random, cosmic set of dice being thrown that you just keep hoping will turn up the way you want. I am pleased to say that I have never seen staff at the cancer facility, treat POC or lower income patients any differently but I’m sure that happens at some points and in some places.
We are a white, middle class, middle age couple. I have no doubts that this helps us in obvious or maybe never obvious to us ways. Frankly, in this fight for life and a future, I will gratefully accept any and all benefits that this ‘never asked for’ and ‘never sought out’ privilege may provide.
In fighting cancer, you will DO anything and everything in your power to try to beat this hydra (the multi-headed mythical creature), who seems to pop a new head and a new problem or new side effect or new twist into the battle whenever you think you have defeated one of the other heads.
Cancer treatment is a growth industry and with advances in treatment options, we have better and better odds. But it feels as if those options are increasingly only being offered to the well off, the rich, famous, “important” people and the rest of the world is left behind.
I have no solutions for this.
I do know that, even working in a hospital, I’ve said that the health care system is broken and we need a major overhaul to fix it. However, there are no easy fixes… some countries appear to be doing better with universal health care. Some seem to be doing better with private health care. But, overall, the skyrocketing costs are turning us into a world of have and have not’s when it comes to access to basic life- saving medicine and somehow we need to reverse this trend.
