A recent article in the Chicago Sun-Times about the coming release of epidiolex really got me to thinking about the gulf that exists between real life and the lofty realms of “national” organizations. The article featured quotes from Ayesha Akhtar, director of education at the Epilepsy Foundation of Greater Chicago. Ms Akhtar works on the frontlines of epilepsy. She said there has been a “flood of inquiries from people who were “ecstatic” about the FDA’s announcement.” She termed the drug’s approval a “sea change” for epilepsy treatment.
That is quite different from the tepid statement released by the national office of the Epilepsy Foundation (EF) which, in a press release, said they were “pleased.”
It has always seemed to me that a disconnect exists between national offices and their local chapters. The use of cannabinoids in treating epilepsy, particularly Dravet syndrome and Lennox-Gastaut syndrome, has been public since 2011 when the Stanley brothers of Colorado developed Charlotte’s Web for young Charlotte Figi who was five years old at the time and suffering dozens of seizures a day. The cannabis cultivar developed by the Stanley brothers was rich in cannabidiol (CBD) and it stopped Charlotte’s seizures, for the most part. When the story was featured in the CNN special entitled “Weed” it was truly a watershed moment which was capped by Dr. Sanjay Gupta apologizing for turning a blind eye to the medical potential of cannabis.
It’s impossible to know how many parents of children with intractable epilepsy turned to CBD but it is safe to say thousands. Local chapters of the Epilepsy Foundation were inundated with questions and the national office began taking steps by encouraging research and rescheduling. And there is an excellent web page at the EF website. But there is still a reticence to embrace the issue fully. Indeed, when the American Cannabis Nurses Association (ACNA) requested a booth at the annual meeting of the Epilepsy Foundation in 2017 they were denied.
Somehow I think the Chicago chapter of the EF would be happy to have an ACNA exhibit table.
Some parents are concerned that the release of Epidiolex will result in a crackdown and curtailment of products like Charlotte’s Web. Others are concerned that epidiolex is an isolate, not a true plant derivative. They point to the “entourage effect” and express concern that the FDA-approved medication will be “too pure,” perhaps providing relief for a period of time but eventually failing.
These are the battles that are ahead of us. I’ve got a pretty good idea which side of the argument the EF will come down on.