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.
10 comments:
That's great info to know. Thanks to you & Jen for all the work it took to compile that list. Vigab. is on our short list. We went up on Depakote this past visit. Our next options once we increase his ratio of the diet if those don't work...are Vigab. & Felbatol. Who knows...Connor's seizures are less since we increased Depakote, but he is still having atleast 15 seizures a day. I know that is good, but zero would be a million times better!!!! I hope Vigab. works for Trevy!!!
I just wish I still had my stash of it for you!
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.
holy moly - so how many sachets will trevy need overall? i see it's much cheaper than ACTH, but still pricey
Hey Mama- Trev's dosage should be anywhere from one to two packets a day. The packets are essentially a buck a piece. Vigabatrin isn't a short term med like the ACTH is. Austin was on it for a total of about 4 years, on 2 packets a day, so roughly $3000. WAY better than ACTH!
whoa! yes, way better - but still! hope that one day it's FDA approved & covered by insurance
Part of me hopes it becomes FDA approved and part of me fears it. When Danielle spoke in front of the JEC it came up that Ovation Pharmaceuticals was just as bad at raising prices on little used drugs as Questcor (makers of ACTH) is. And who will be marketing Vigabatrin in the US?? Ovation. So perhaps it will get FDA approval and things will be okay OR it gets approval and Ovation jacks the price up making it unafforable for those that need it. We'll have to wait and see.... unfortunately!
I know Jen...I've been having the same heart conflict. Although I can't help but think with everything happening on WallStreet with corruption being exposed...that it will make the people in power more sensitive to issues like price gouging in the pharmacuetical world.
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
Thanks for the info. Good to know if we decide to move in that direction. Thanks!
Yes, even though cheaper than ACTH, all the cost is out of pocket. Hopefully it will have FDA approval soon.
Marissa's pretty much on the maximum dose to Keppra and that's pretty good. It takes forever to dial in a new dose when she grows, so it's not a great choice, but so far, she's not doing too badly.
She's not a candidate for surgical resection, so meds it is.
It's all so interesting to me. This whole med business...and it is a business, a moneymaker for someone! So wrong!! Unethical and in-humane....but that's a soapbox for another day.
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!
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