THE AMERICAN HEALTHCARE SYSTEM IS BrOkEn — My life with psoriasis + the difference between healthcare in America and China


I have a skin condition called psoriasis. You've probably heard of it. Some 7.5 million people in the America (125 million people globally) are currently in the same boat as me, so it's likely that someone you know has some form of psoriasis. But for those of you who don't really know what psoriasis is, here's a quick overview:

Psoriasis is an autoimmune disorder in which the immune system attacks the skin cells. These "flare up" create psoriasis plaques, i.e., patches of dry, flakey, red skin that can become itchy and overall uncomfortable. Psoriasis comes in a range of forms and can pop up in an isolated area or happen all over your body. (What fun?!!!) While research supports a genetic link to the likelihood of developing psoriasis and there are many common triggers for flare ups, the exact causes for developing psoriasis in the first place aren't well known (skin stuff can be a little murky sometimes guys). There is no known cure (that's right, once you have it, it's your buddy for life) but there are a variety of treatments for the symptoms. Treatment ranges from topical medication, photo/light therapy (which used UVB because UVB is good at fighting skin stuff but UVA is really only good for tanning... both increase your risk of cancer, so yay?), and a few other medications (which most of my knowledge is on beta-blockers and harsh chemical treatments that can be tough on your body and don't mix well with alcohol or pregnancy... so yay?)

Before I go any further, I'd like to stop and remind everyone that I am not a doctor or a skin specialist. Everything I say regarding psoriasis is what I have learned through personal experience, through my own doctors, and independent research. I recommend checking out the National Psoriasis Foundation website if you'd like to do a bit of your own research on the topic. Now that that is out of the way...

I have friends who also have psoriasis so it didn't seem like it would be that much of a life-altering thing when I got it back in 2015. For everyone who I'd known with psoriasis, it was easy to manage with topical treatment. "You're first flare up tends to be your worse, but then it's just putting cream on when it pops up periodically," I was told. That was super comforting to me. I imagined that if I just made it through my first flare up, the rest will be easy to fight as it pops up, probably during times of stress. Unfortunately my psoriasis was a little different: I'm unresponsive to topical treatment (and at this point in my life, I've tried ALL the different creams, ointments, etc.) Even more unfortunate, or at least I thought so at the time, my doctors didn't realized this until I was a few weeks out from moving to China, so we were unable to try any other type of treatment.


My Experience Being Treated For Psoriasis In China

Before going to China, I was told that getting treatment there would take a long time... like even longer than in the US (for comparison, at least in Portland, Ore., the wait just to see a skin specialist usually takes me between 3-4 months, even after being established with a doctor). This stereotype of slow or substandard treatment is often associated with socialized healthcare, I have found. Once I got to China and started seeking treatment, though, that couldn't have been farther from the truth. It took almost no time at all to see a skin specialist at my local hospital—thankfully, because at that point my psoriasis not only covering most of my body (except for my face {blessed emoji}) but it was excessively painful and itchy. "Why???" I would wonder," Why didn't any of my psoriasis buddies warn me about the pain? About the itch???"

Not only did I not have to wait a long time to see a doctor, but they didn't make me try yet other topical treatments and put me directly into light thearpy. Literally! I went directly from my doctor appointment up to the radiology department into a UVB booth. All my doctor's appointments, a month's worth of light therapy, and the medications I took to supplement the light therapy cost me approximately 350 RMB or $52 USD. That's mind-blowingly cheap compared to anything I've ever done related to healthcare state side. I never had another flare up, or even a hint of a flare up, the rest of my time living in China. This is only surprising for me because I experience at least three common triggers (excessive stress, skin trauma from a motorbike accident, and a massive lung infection) without any flare ups at all. While this is great, it also seems a little weird. I try not to question my good fortune too much on that.

My Experience Being Treated For Psoriasis In America 

 A little more than a year after moving back to America, I got my second flare up. It start small. I still had topical medication from my previous flare up and started using that, crossing my fingers it would be effective at stopping my psoriasis from growing into a full on problem again. It did not (but you probably already knew that, because otherwise there wouldn't be much reason in telling this story). Once it because clear that what I had on hand wasn't going to help, I made an appointment to see my dermatologist. It took three months to get in. In the time that I waited my psoriasis grew from about 3 percent to 7 percent. (For your reference, under 3 percent is a mild case, 3-10 percent is a moderate case, and anything above 10 percent is severe. This refers to what percent of your skin is covered with psoriasis plaques). Taking into consideration my medical history with psoriasis, we decided the best thing to do is to get me back into light therapy. So we gave me some new topical treatment to try while waiting and submitted a request to my insurance company, an Aetna plan.

A week went by, my skin was getting worse, I heard nothing. Then another week went by without a word from my doctor's office on when I can come in for light therapy. So I called to check up on it. They were still waiting on approval from my health insurance. Two more weeks of silence went by until I got the call: Insurance was denying my claim and I need to come in to discuss options with my doctor. My insurance company wanted me to try another topical treatment we already knew wouldn't work and my doctor didn't agree with. By this time my psoriasis was at 11 percent. This puts me in the severe category. When you combine that with my medical history, the insurance was bound to accept our resubmitted request, but we would put me on this other topical medication in the meantime just to make insurance happy.

This went on for about 4-6 months. Each time we would submit a light therapy request my insurance would deny it and insist on my trying some other expensive medication that we already knew wouldn't work. They dodge my doctors repeated request for a peer-to-peer. You couldn't get my health insurance company on the phone to plead my case. Why? Because light therapy is more expensive and they didn't want to pay for it. (The expense of light therapy is something I don't quite understand. It cost about $7000 for light therapy treatment at a doctors office, despite the machine being just a UVB tanning booth. You can buy one online—same as the one at the doctor's office—for $3000. My estimated cost after insurance was to be around $1000, something I wasn't informed about until the third time insurance denied my request.) The whole experience was costing me between $500-$1000 a month in doctors visits and unnecessary medication.

By June I was fed up. More than that, I was down right pissed off: Because of the way our healthcare system is set up, I wasted thousands of dollars, had a severe case of psoriasis that now covered about 35 percent of my body, and itched like a kid with the chicken pox. I was tired of how much it was costing me to fight my insurance on this. I was tired of my condition getting worse with each passing week. I was tired of being itchy. So I said "fuck it!" I stopped trying to get treatment the recommended way and bought an unlimited tanning package for the bed with the highest UVB I could find at a local tanning business. I mirrored my self-prescribed light treatment on what I had done in China and crossed my fingers it would work. My psoriasis stopped getting worse almost immediately. After two week, the itch has completely gone away. After three weeks, most of my plaques were faded. It's been just over a month and my psoriasis is almost completely gone.  The cost? Only $40, less money than it cost me to step into my doctor's office for a 5 minute check-in.


It Shouldn't Be Like This

My experience with healthcare in China and in America couldn't be more different. Beyond the often absurd cost to receive care in the first place in the states, our health insurance companies are businesses with no incentive to help make healthcare actually affordable for their customers. I'm not saying all health insurances are bad, or evil, but I certainly haven't had a good experience with them in the states. And my story really isn't all the special. This happens to people with all sorts of conditions every damn day. I'm one of the lucky ones, my condition isn't life threatening and I was able to find a more affordable alternative option. But I shouldn't have to do that. My health insurance, which I pay a pretty penny for every month out of my paycheck, shouldn't be able to gamble with my health just because they want to save a few bucks.