Changing the World
Posted in Jude's Story on July 17, 2008 by ianmarreyThere’s a very special lady who I don’t know, who I’ve never met and who I may never meet. She has a wicked sense of humour and a beautiful way with words.
Her name is …danielle, she hasn’t yet told me what the … stands for.
…danielle has three kids - Bristel, Toby and Trevor and Trevor, like Jude, was diagnosed with IS. Visitors to Jude’s blog might have gone to see Trevor at his blog. If you haven’t, take a peek.
In the US, a drug used in the treatment of IS costs. ACTH costs an awful lot of money. $40,000 per vial. 5 vials per treatment and insurance companies are reluctant to pay. The other first line treatment for IS is Vigabatrin and that is not FDA approved in the US.
To put that cost in perspective, Jude was twice prescribed ACTH here in the UK. The first time was aborted after a couple of doses ($80,000) and the second time we got through 7 vials ($280,000). Cost to us, Jude’s parents £0. I don’t know the exchange rate between sterling and the US dollar but my guess is that our £0 wouldn’t go very far in the US.
…danielle got quite irate about this state of affairs. I think quite rightly …danielle got irate. She told us through Trev’s blog and people read and understood.
Even the government were reading. And the government got in touch.
If you read this, drop by …danielle and wish her luck, leave …danielle a comment. In spite of everything going on for her, …danielle and her blog might just change the world for someone else. How impressive is that?
Thanks.





