There are over 500 children in Scotland whose parents feel could benefit from a new cannabis-derived drug for seizures called Epidiolex. But recently, Secretary Jeanne Freeman had to tell parents that only ten of them would be given the promising medication.
In Glasgow and Edinburgh Scotland, only five children each will be allowed to try the new medication Epidiolex.
The process for getting the medication is tumultuous as well.
Only patients with either Lennox-Gastaut or Dravet syndrome will be eligible for the treatment and will have to be pre-approved before the medicine is supplied.
Epidiolex is a cannabidiol (CBD) product for controlling seizures in people with difficult-to-treat childhood-onset epilepsy and can be prescribed for children 2 years and older.
One mother, Lisa Quarrell, has a six year old who has epilepsy. She is from Lakeshire and has been told her son is behind a long list of patients for the medicine.
Lisa feels scared and frustrated that they have been waiting for a long time to get the medicine. She has watched her son’s health go downhill and claims that it has been heartbreaking to know that there is help for him but it is out of reach.
Other parents have similar complaints. One mother is upset and explains how her son will go blue for as long as ten minutes during a seizure. Another mother managed to gather over 250,000 names in a petition and was given the drug on “compassion grounds.” She is a very rare case.
GW Pharmaceuticals, the makers, says their reasoning for making the drug so scarce is because they are actually going to provide the drug to about 210 children on “compassion grounds.”
And while the makers “deeply empathize” with parents and families going through the waiting process, they also say that clinical decisions had to be made about who this medicine is best suited for and that families should not put their children at risk.
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