Wheelchair pillow: $300
Monthly prescription costs: $400
The cost of having multiple autoimmune disorders? Exorbitant (and growing).
On websites like PatientWorthy, we talk a lot about the physical tolls rare conditions extract. We tell stories of triumph and stories of heartbreak, and we’re not afraid to get into the nitty-gritty of it, bodily functions and all.
But one thing we don’t always discuss at length: money.
It’s just kind of a taboo subject, in a world where little else is. I mean, I could walk into a party and talk at length about my sex life or the disemboweled opossum I saw on the road…
Now imagine if I went in and asked people what their monthly income was. For some reason, that would be considered more of a party crasher.
But money is important, especially when you have a rare condition.
After all, rare diseases don’t just have physical costs…they have huge monetary ones.
So let’s take a lesson from Manitoba’s Christine Bonnet and really talk about it.
In the article about her in CBCNews Manitoba, Bonnet goes into depth about how neuromyelitis optica, myasthenia gravis, and lupus have affected her finances. She’s honest about her new yearly income on disability (less than $10,000), and the struggle of paying hospital bills.
“At one point [hospital staff] were turning to my husband and saying, ‘Does Christine have a living will.”
It’s a harsh reality—one that, Bonnet mentions, is very different for everyone depending on:
- Family situation
- Employment situation before disability
- Location
- Private insurance
- Age
And that’s an incomplete list. But the list will get more flushed out the more experiences we collect.
So while it may be awkward to say, “Hey, what’s in your wallet?” I do encourage everyone to branch out and have candid conversations about what people are paying with their conditions and how.
We can’t always do something about the physical cost of rare conditions—but maybe we can do something about the financial.
