I’m just hoping it doesn’t all happen again if I go back to school…!

It’s mind boggling that these people can’t work out the argument for themselves. Trouble is everything’s in ‘silos’ so as long as NHS aren’t paying they don’t care. If you’re stuck needing home help etc. that’s not their problem – it’s social services … differnet budget! Aaaaaaaaaargh!

And yes, that’s exactly what happens – the state just ends up having to pay for people who can’t work or care for themselves because they can’t access the drugs they need. I actually wrote a letter to a government official (who ended up being very helpful) about how they could either help me access the drugs I need for a few months so that I would be able to go out and look for a job and contribute to society, or leave me on the couch, unable to do anything productive. It should be a no-brainer.

Yup, that’s exactly what it means – unless they wish to fund themselves privately. I don’t know if it’s yet available ANYWHERE, this particular one, as it’s just come through trials I think, but it’s the same situation with a whole lot of other biologics.

I read a bit about the Enbrel thing on your blog – what a complete nightmare! I’m glad you got there in the end but sorry you had to go through such hell first!!

Last year I fought and fought for temporary coverage of Enbrel from the Ontario Government, in between graduating from school and finding a job with drug benefits. It took nearly a year before they would approve Enbrel (even though I had been on it for 5 years at the time!). In the meantime, I had to try a handful of other drugs and an absolutely enormous dose of methotrexate to make sure there wasn’t anything cheaper that could help me. I ended up going without Enbrel for 3 weeks and felt horrible; I could hardly even dress myself. It was so depressing and frightening, and it certainly opened my eyes to what it’s like for people who can’t access the drugs they need.