I’ve been preparing for a battle. And I’m now ready to charge full speed into the messy underbelly of the healthcare industry. I haven’t posted much this month but I’ve been very busy dealing with new health issues.
I’m in the process of writing directly to my insurance carrier, requesting an appeal of their decision that denied treatment for systemic lupus with intravenous immoglobulin (IVIG). Last year, I had 3 rounds of IVIG with total remission. This stuff is expensive (about $15,000.00 per infusion), so obviously they don’t want to shell out that kind of money on a regular basis. Unfortunately for me, this is the only treatment option left. All other medications have failed.
I’m sick of their bullshit denials. This means war!
I saw my doctor a few weeks ago. A new rash developed on my arms, legs and chest. It’s red, raised and bumpy on my torso, and flat on my extremities. It’s actually layered on top of the recurrent SCLE rash that flared up in January. The January rash was fading somewhat and then this new one took its place. My doctor told me this new rash is small vessel vasculitis. Currently it’s affecting my skin but he said it can progress to the kidneys, eyes and brain. I have to watch out for areas of the skin that may ulcerate. Left untreated the skin could become gangrenous.
Fortunately it’s not summertime … yet. Hot and humid weather makes this stuff worse. My clothes cover most of it and even though it’s on my forearms and neck, it’s not so bad. Makeup covers the hives on my face. Then again, maybe I’m just used to looking at it.
The rash is everywhere on my body, but this photo pf my leg shows both types of lesions. Some are red, flat and carpet-like. It feels like a sunburn and is hot to the touch.
The vasculitis is small, round and dark … about the size of an eraser head. It hurts but does not feel like a sunburn.
That’s why I’m fighting.
I’m beginning by writing the insurance company a letter. I’m sending them photos of my skin like the one you see here, as well as others that are too gross to post. I’m gathering published data from the National Institute of Health with evidence of clinical trials of IVIG on patients that have systemic lupus and small vessel vasculitis and have gone into remission. I’m also contacting the US manufacturers of IVIG. Parmaceutical companies are interested in working with people who seek unconventional treatment (like one of their products) that has been denied by insurance carriers. To some people, Michael Moore is a total crackpot. When it comes to health insurance, you should watch his movie, Sicko. His illustration of the health industry in the United States is spot on.
I’m not waiting for my kidneys to be destroyed. I’m not waiting to go blind. I’m not waiting to have seizures. Nobody at the insurance company is going to cave in and give me the medical treatment I need. I’ll have to fight for it.
Bring it on. I’m ready.
LupusRanting 