Today is our first post in our blog and it’s a very significant day in our lives. We want to thank Anthem Blue Cross Insurance Company from the bottom of our hearts for giving Addi and Cassi a chance at life. Blue Cross has approved Zavesca for both girls and we plan to start the girls on it immediately. We have heard it doesn’t taste very good but we’ll manage that.
Blue Cross has been the most amazing insurance company since Addi and Cassi were born and we’re are going to beat Niemann Pick Type C disease with their help. The promising research announced by Brown and Goldstein labs shows what a central role Niemann Pick Type 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 (total 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 Niemann Pick Type C. Do you think they could have considered splitting the cost with Blue Cross or could start a compassionate use program in order to support us and other kids suffering from Niemann Pick Type C? It’s all about the money. We are very fortunate that Blue Cross has compassion for children like Addi and Cassi and is supporting us in our fight against NPC.