Time to Bust Out

Yesterday was a tough day.

Our appeal to the insurance company went down in flames, refused once again. And our other option of applying to the Ontario Drug Assistance Plan really isn't an option since another ECD patient was recently refused coverage for Kineret, after an appeal as well.

We're hoping that the manufacturer of Kineret will help us out, but I'm not terribly optimistic since they made it very clear at the beginning of my three month trial that it wouldn't be extended.

I have just a few vials of Kineret left, and have started alternating my shots every other day in order to stretch it out. I wonder how soon after that last vial I'll be again hobbling around and in significant pain? The thought scares me silly. Although I still don't have a lot of energy, being able to sleep (mostly) pain free and being able to get up and down the stairs for the last couple of months has been a huge blessing. Just being able to go to another floor of our home has helped me to stay positive.

The sad thing is that if we (myself and the other Ontario ECD patients) had cancer or other prevalent serious illness this wouldn't be an issue. This denial of treatment is down to one thing and one thing only. There is no drug anywhere that lists on its label "for the treatment of Erdheim Chester Disease". A few words keep us from getting treatment coverage.

When I first started this blog almost two years ago I explained why I was using a pseudonym, being self-employed I didn't want to scare away clientele. The reality is that it looks far less likely that I'll ever get back to work and all I'm looking for now is a bit of mobility and pain relief for whatever time I have left.

So we launched one of our big guns yesterday. A letter was sent to a reporter of a major Toronto newspaper who had recently written a series of articles about a young patient refused access to an expensive drug that was provided to another patient elsewhere in Ontario at no charge. We're hoping that International Rare Disease Day falling on Monday will open the door to conversations about treatment coverage for rare illnesses. At the very least shame our insurance company and the government into helping us.

We're well aware that the prognosis for ECD is not good. Kineret and other drugs being prescribed around the world for ECD are not a cure. I'm just looking to spend the rest of my life in a bit more comfort rather than constantly be battling for the opportunity to get some relief.