I have psoriasis, a chronic skin condition that can be debilitating, but in my case is not. For me it’s mostly uncomfortable.
I’ve had it for about 20 years, and I do suffer from some of the psychological effects of it, like depression, embarrassment and shame — 20 years of looking like a burn victim and explaining that you aren’t contagious, don’t have leprosy, and that you you do in fact use lotion will do that to a person — but until 6 years ago it wasn’t terrible. I had a bit here and a bit there, and that was it. In the past 6 years, it has gotten much, much worse. It now involves 80% of my body. That doesn’t mean I’m 80% covered in it — if you have one little spot on a body part, say a 1-inch diameter dot of it on your forearm, the dermatologist considers that whole part of you to be involved in the outbreak. However, 80% is the threshold where psoriasis comes to be labeled severe.
I have seen many dermatologists over the years, and I’ve always reached a point where I’ve become very discouraged and depressed and have just given up and stopped going. The standard treatment — various cortisone creams that used to be the only treatments — has never worked for me. In the last 8-10 years, many new treatments have come out on the market, and with my husband’s support and encouragement, I’ve been going to a dermatologist again, and this time I am determined to stick with it until I’ve either found a treatment that controls my symptoms (it can’t be cured, but it can go into remission), or until I’ve tried all the available treatments.
It hasn’t been easy.
Back in April 2007, after yet another failed treatment, my doctor prescribed a something new for me. It’s something that other people with severe psoriasis (including some I know personally) have had very good luck with. There are some scary potential side-effects, but I was ready to try anything. So I took the prescription to the pharmacy, learned that the medication required a pre-authorization from my insurance company, asked the doctor to request one — and my insurance company denied coverage for the treatment. They even went a step further, informing me that I would not be covered for the whole category of treatments that this new treatment is in, leaving me with only one treatment option: the cortisone creams that don’t work.
The letter denying coverage (and effectively treatment, since it costs nearly $1,000 per dose), threw me into a tailspin for days. Every feeling I that I usually manage, ignore or repress about my psoriasis came out and I was largely inconsolable.
And then I got mad. Why should my insurance company get to decide what treatments I can and can’t have? Why can’t I be treated by my doctor? Why do we have such a crap-tastic system in the US, one that is almost whimsical in terms of who gets covered and who does not? And don’t get me started on my rant about rationing of health care — we ration health care in this country more than any other developed nation. The only difference is that our rationing is irrational and driven by profits, rather than being rational and driven by the desire to reduce harm in the population.
My story has a happy ending — after 2 appeals from my doctor, my insurance company has reversed its decision and will now cover the treatments. And even if they hadn’t, it’s not likely that I would die from psoriasis, unlike the people in Michael Moore’s new movie who are dealing with life-threatening conditions for which they either do not have insurance or cannot get coverage from their insurance companies. But my experience of the process is the same: our system is broken, and I’m mad as hell about it.