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.
Comments
If you are looking to start ASAP, I would say get a small order from Caligor and at the same time, place an order with one of the others. I know Masts takes about 10-14 days to receive a shipment.
Speaking of corruption...J & I were SO angry learning about AIG's fraudlent usage of their bailout money! AIG was our insurer during our first round of ACTH. Our AIG case manager literally stopped shipment on Trevor's meds...and told us if we continued with his treatment that AIG would not cover any costs incurred as a result of side effects! Grrrrrrrrrrrrrrr...
I'm more than a little bitter...
...danielle
Yes, even though cheaper than ACTH, all the cost is out of pocket. Hopefully it will have FDA approval soon.
She's not a candidate for surgical resection, so meds it is.
Can you appeal/fight for coverage based on other meds not working? Especially when you have no other or very limited options? Can your docs help? Vouch for this w/ the insurers. Forgive me if the answers to these questions seem obvious as I may seem totally out to lunch, it's just different here in Canada is all. For the most part, but I do know of people having to pay for cancer drugs here that have resulted in mortgaging houses, etc. Rare, but it does happen.
We too have begun Keppra in addition to Trileptal. The seizure activity has improved but we did increase his Keppra doseage this week because R is still seizing some. Here's hoping!