Idaho Medicaid has officially denied our appeal to cover Sucraid for my daughter. Fortunately, back in January I began the process of working with Curascript to get 3 months of Sucraid for free. NORD will now be covering her medication until we can find another way to pay for it.
I also spoke with a representative from the Idaho Congress who will be letting me know if there is anything I can do from here on out to help bring awareness about the importance of Sucraid for those with CSID. My argument is that although it is difficult but possible to remove all sucrose from the diet, that type of diet does not provide an ample amount of carbohydrates to a growing child’s body or to an adult bordering on being underweight such as my daughter.
I still believe getting my book out there and using the power of social media are two very effective ways to bring about CSID awareness. If you have a story or struggle related to receiving Sucraid or being denied insurance coverage for Sucraid, please let me know. Every personal account we can document will help us to win this fight for our children!
The last shipment we received for Parker’s Sucraid in California listed the current cost of Sucraid at a whopping
$6116.93 for two bottles (a 28-day supply)!!
You can also contact the Partnership for Patient Assistance and search for your state for help.
I understand at this time those in Australia are not able to get Sucraid at all. If you can send me information documenting what you have tried to do up to this point to get Sucraid, I can gather every one’s stories and see if we cannot begin to pursue worldwide distribution.
In the meantime, there are enzymes you can purchase directly for low cost to help with digesting all carbohydrates. As always, there are no guarantees, and always begin with small servings to determine tolerance levels.