The Financial Inequality of RA
As I glanced at my ringing phone and saw it was my rheumatologist’s office, I wondered if they might be calling to reschedule my upcoming infusion appointment. However, it wasn’t the office’s scheduler calling; it was the billing department.
With a soft, hesitant voice, she explained that because my insurance cycle just renewed, I have not met my deductible. While the co-pay assistance for the very expensive monthly infusions would still be in effect, my out-of-pocket cost for administering the IV would be $491. She paused while I inhaled and issued a long sigh. Then she asked if I still wanted to proceed with the appointment. I replied, “Well, what I’d really like is an overhaul of our insurance system, but since that’s out of your control, yes, I want to keep the appointment because going without the medicine is a lot worse than putting it on my credit card.”
RA medications allow me to lead a somewhat normal life
Indeed, my monthly Orencia infusions diminish my symptoms of rheumatoid arthritis/rheumatoid disease [RA/RD] enough for me to lead a fairly normal life. There are severe flares that keep me temporarily housebound, and there are limits on my activities. I never have a moment when there is not discomfort in my body.
These are things I don't take for granted
However, I am still able to work, parent, and socialize thanks largely to the IV treatments. While I also do many other things for my health (exercise, diet, chiropractic care, meditation, acupuncture, etc.), the times when my medical treatment plan wasn’t effective have let me know that being able to work, parent, and socialize should not be taken for granted.
Therefore, I don’t have to think about whether or not I’m going to cancel my infusion or put the nearly $500 on my credit card. I’m in a place of privilege where I have credit available to be able to do this, and I don’t want my disease activity to return to the high duration and severity I’ve experienced in the past. However, while I am indeed grateful I can access the meds I need to keep this disease in check, I get frustrated that the costs of treatment seemingly go unchecked.
The rising costs of medical and healthcare
While I feel fortunate to have insurance, I’m flabbergasted at how much my premium, deductible, and co-pays jump each year. I see reports of healthcare profit margins and CEO pay, and I’m infuriated to see that some people are getting filthy rich while many of us struggle to cover our medical costs. A recent article shared that in 2018, the average income of 62 CEOs of healthcare companies was $18 million a year.1 While there are people having to decide whether to buy medicine or groceries, or whether to pay for a medical procedure or a car repair, the people running the companies that are supposed to be promoting our health are making money hand over fist.
RA pain shouldn't be a commodity
I can’t wrap my brain around how life-saving and life-altering medicines are treated like dishwashers, shoes, or luxury sedans in our capitalist society. Increased profit margins have no place in healthcare. Of course, companies have to cover their expenses, but allowing leaders to make more money in a year than the overwhelming majority of Americans will make in a lifetime just doesn’t seem right. The medication I need to keep my symptoms at manageable levels shouldn’t be subject to supply and demand pricing forecasts. My pain shouldn’t be a commodity.
RA treatment is unaffordable for so many people
As angry as I become thinking about how there are people literally profiting off my suffering, I know the suffering of the people who can’t afford the healthcare marketplace is all the worse. Not being able to afford RA/RD treatment can mean unchecked pain, inflammation, and fatigue. As RA/RD is a progressive disease, it worsens over time as the symptoms cause permanent joint damage. Therefore, not having the ability to access treatment means the damage one experiences from this disease will be more severe than when symptoms are reduced with medication. Furthermore, in rare cases RA/RD can be fatal, so lives are being put at risk by limiting access to medication.
It can feel unfair to have this disease. Yet, unfairness takes on a whole new level when considering that some people can afford to treat it while others can’t and, meanwhile, CEOs are getting enormous sums of wealth for running companies that charge such high prices for treatment. As a nation, we need some checks on the ever-increasing costs of healthcare. This is literally a life-or-death matter, and our lives should be worth more than a stock portfolio.
When was your last flare?