But we desperately need your help! We received an invoice today for the first three months of this medication, and it is 1,080 euros. That's roughly $1550! Insurance will hopefully reimburse us at some point, but it could take months, or even years, to run the appeal gauntlet to get coverage. In the mean time, we must pay out of pocket.
Stiripentol is the only drug currently designed specifically for Dravet Syndrome. The drug is not FDA approved, but does have "orphan drug" status; meaning we can get the drug from France, but most insurances will not cover it. Drake's neurologist had been holding off on prescribing it based on the cost factor. However, after the last few seizures, he recommended it was time to give this one a shot; we had no idea what the initial cost would be until after the drugs were already on their way to us (other than knowing it would not be cheap). Drake has now been on various combinations of eight different seizure medications. He's currently on four different meds. Nothing has given us good control. Stiripentol has been very effective for many (but not all) of the children we know that have DS. We are very hopeful that the same will be true for Drake; it will take several months to determine its effectiveness.
At this time, any paypal donations that we receive (through the Wish List page) will go directly toward the costs of Stiripentol unless otherwise specified in the donation notes. We thank all that are able to help, even in the smallest way.
Stiripentol is the only drug currently designed specifically for Dravet Syndrome. The drug is not FDA approved, but does have "orphan drug" status; meaning we can get the drug from France, but most insurances will not cover it. Drake's neurologist had been holding off on prescribing it based on the cost factor. However, after the last few seizures, he recommended it was time to give this one a shot; we had no idea what the initial cost would be until after the drugs were already on their way to us (other than knowing it would not be cheap). Drake has now been on various combinations of eight different seizure medications. He's currently on four different meds. Nothing has given us good control. Stiripentol has been very effective for many (but not all) of the children we know that have DS. We are very hopeful that the same will be true for Drake; it will take several months to determine its effectiveness.
At this time, any paypal donations that we receive (through the Wish List page) will go directly toward the costs of Stiripentol unless otherwise specified in the donation notes. We thank all that are able to help, even in the smallest way.