Medical debt, like chronic illness, doesn’t discriminate
A lot of people assume medical debt is something that happens to “other” (read: poor, unhealthy) people. But pretty much everyone is at risk, including “comfortable” people like me with “good” health insurance. As of January 1, two of the prescription medications that helped put my autoimmune disease into remission have nearly doubled in price (from $75 to $125 and from $135 to $190). I now have to decide if I should devote more of my budget prescriptions each month, if I should reduce my dosage (and run the risk of having symptoms come back), if I should try to find a lower priced medicine (which could mean months of trial and error and a possible flare up), if I should try to apply for patient assistance, or if I should go into debt to pay for my medical expenses.
Infographic courtesy of http://www.nationaldebtrelief.com/
Conundrum
The problem with having two (or more) autoimmune conditions is that the treatments for one can exacerbate the other. I have failed Arava (or, more truthfully, Arava has failed me). Now the only option left before going to biologics (which my insurance will only partly cover, plus they have a fail-first policy, hence the endless wait) is sulfasalazine, which may resolve my GI issues and RA symptoms, but could potentially make my lupus symptoms much worse. At this rate, I almost feel like prednisone is easier and safer. What a mess. And why do I still feel like it’s my fault that the treatments don’t work instead of the other way around?
Pretending to be normal
As you may have noticed, I haven’t posted in a while. Mostly I’ve just been busy—working, teaching, writing my dissertation, and trying to having something of a social life. Basically I’ve been playing at being a normal person. And I did a pretty good job at it, too. This weekend though, all the small complaints that I had been collecting over the past few weeks (feet too sore to wear heels, intense morning stiffness, knee pain, fatigue, photosensitivity, GI issues) seemed to snowball together, and now I’m lying on the couch feeling sorry for myself. I like to think I’m getting better at not blaming myself and riding the wave of flare and remission, but it’s still really hard. Sometimes I feel like as soon as I get everything under control and establish a routine, something new pops up to wipe me out again.
Between the Arava and inflammation I’ve lost more than 10 pounds since August, despite still being on a low-moderate dose of prednisone. While for many people that would be a victory, for me it isn’t—I’m already at the low end of normal BMI. The GI symptoms I’ve had recently, which may or may not be from the Arava, have not helped either. I’ve been tracking my stress levels and watching the foods I eat, cutting out wheat and dairy, but it just seems to be totally random and unpredictable. I’d like to exercise too, but I don’t have the energy (yes, that old chestnut). And it’s hard for me to take the compliment when people tell me how good I look, since I feel so unwell and unfit inside. I suppose I should be pleased that my make-up skills are good enough that I don’t look like death warmed over.
All this makes it sound terrible to be me, but that isn’t really the case. I’m just frustrated with my body. I really am grateful and content most of the time. I have lots of love in my life and people who are looking out for me; I have a job that I find satisfying and fulfilling; I have my academic work—which I love, even if academia makes me a little crazy sometimes; I’m financially stable and I have decent health insurance, though I often have to fight to get what I need; and I have various volunteer and social commitments that keep me engaged in my community when I’m able. It’s a good life, even if it’s not the one I thought I was going to have.
Ad-vocation
I’m scheduled to meet with US Senator Johnny Isakson (R-GA) next week to discuss specialty tier medications and how medicare and commercial insurance policies are preventing patients from accessing life-saving medications. Anyone else negatively affected by specialty tier pricing? I’d love to share your stories as well as mine.