Now that it's clear ACTH will not be providing us with a second round miracle...we are moving towards the next best option. Vigabatrin.
My knowledge of Vigabatrin is limited to a few things.
- It is not currently FDA approved and as such the cost will be out of pocket. (although the IS community is hoping that could change when it is presented for FDA approval this Spring)
- Vigabatrin is a first-line treatment for IS in Canada & Europe.
- Vigabatrin has provided seizure freedom to many IS babies
- And Dr. Chugani will not pursue surgical intervention unless a child has failed ACTH & Vigabatrin.
I enlisted the help of a close friend/fellow advocate & IS mommy...in compiling Vigabatrin pricing options. Jen, thanks for giving me access to your vault of Vigabatrin knowledge...and for putting together the below information. For me...and others that might be finding themselves on the market for Vigabatrin.
ALL require a script. Caligor requires a letter of medical necessity.
www.mastersmarketing.com- 50 sachets are $53.50, 100 tabs are $92.50, shipping is $15.50, shipped to customer.
Caligor Pharmacy (212 369 6000)- 50 sachets are $132.00, 100 tabs are $185.00, shipping extra, shipped to doctor only.
Murray Shore (800 201 8590)- 50 sachets are $81.00, 100 sachets are $148.00, 100 tabs are $148.00, shipping is $45 by Fed Ex, shipped to customer.
Marks Marine Pharmacy (877 888 9265)- 200 tabs are $250, shipping extra, shipped to customer.