Let's Play the Good News/Bad News Game

The Good News:

Last week I went back on some heart meds that didn't work out well for me last year, but in combination with Kineret things are looking up! It's taken some experimenting with dosages and the time of day that I take this new drug but I've had two good days in a row. I even felt well enough today to drive for the first time in about a month. Just to the pharmacy (to pick up more drugs mind you) but it felt wonderful to get out of the house.

The Bad News:

On the way back from the pharmacy this morning I picked up the mail. I didn't expect to hear back from the insurance company so soon (the application for Kineret coverage only reached them Thursday evening) - but I could have waited a bit longer for this news. No, no and absolutely no. No coverage for ANYTHING that doesn't specifically state that it's for the treatment of Erdheim Chester Disease. No such thing. Not one drug in existence that states that it's for the treatment of ECD. For the icing on the cake, the letter was unsigned without a printed name of the bottom. An anonymous slap in the face.

So despite the fact that medical teams around the world are investing heavily in research to improve the quality of life, and hopefully the lifespan of ECD patients - their findings are dismissed by our insurance company. And our government also declines to help (a fellow ECD patient in Ontario already had to find this out the hard way, and I've been advised that it's not worth the effort to apply to the government after another patient has been refused coverage. Again because it's "off-label").

I have two and half weeks worth of Kineret left in my fridge. I try really hard not to dwell on this point, but the stats tell us that 60% of ECD patients die within 32 months of diagnosis. I'm at month 25. And I'm in the group (cardiac involvement) that usually lands in the 60%.

So I play that stupid mind game of "what would you do if you were told that you had six months to live?" Fight like hell with our insurance company and government for a drug that might improve those odds? Or save whatever energy I have to spend time with my family? There is no right answer to this one.

I'm not the only ECD patient (or person with a rare and serious illness) out there and many of us are dealing with this issue. Things have to change. Change so that we can stop wishing that we instead had a "common" serious illness for which drugs would be handed out without a blink of an eye because of what is printed on the drug label.