Today is our first post in our blog and it’s a very significant day in our lives.  We want to thank Blue Cross Insurance Company from the bottom of our hearts for giving us a chance at life.   Our parents told us today that Blue Cross approved Zavesca for both of us and we plan to start taking it immediately.   We heard it doesn’t taste very good but we’ll manage that.  

Blue Cross has been the most amazing insurance company since we were born.  We are going to beat NP-C with their help.  The promising research announced by Brown and Goldstein shows what a central role NP-C plays in cholesterol metabolism.

On the other hand, we want the world to know how terribly disappointed we are in Actelion Corporation.  Actelion, a Swiss based pharma company, does not have a "compassionate use" program established within their company.  Compassionate use is a term used in the United States for "a method of providing experimental therapeutics prior to final FDA approval for use in humans. This procedure is used with very sick individuals who have no other treatment options. Often, case-by-case approval must be obtained from the FDA for "compassionate use" of a drug or therapy.

Actelion makes millions and millions of dollars each year (Ttotal net revenues of $946.4 million, up 38 percent since 2006) but DENIED our request for the only drug that could possibly help slow down NP-C.  Do you think they could have considered spliting the cost with Blue Cross or starting a compassionate use program in order to support us and other NP-C kids?  It’s all about the money.  We are very fortunate that Blue Cross has compassion for children like us and is supporting us in our fight against NP-C.

Posted by Addi and Cassi