Though it’s hard to remember now, there was a time not too long ago when cannabidiol (CBD) was not a household name–a time before Epidiolex® and widespread availability of medical cannabis and hemp-based CBD products. And we all have a very special little girl with an incredible family to thank for all the progress we’ve made over the past few years.
I first learned about Charlotte Figi when I was tasked to do some research on pediatric epilepsy as part of a project I was working on for a company developing medications to treat Lennox-Gastaut syndrome (LGS). I took a dive into the clinical literature and learned that many parents were using CBD oil to treat their children with severe forms of epilepsy like LGS.
An article published in Wired then came my way. It was an eye-opening piece on the struggle and perseverance of families across the US traveling thousands miles from home to access the CBD oil their children desperately needed–stories that were inspired by Charlotte and her family.
Charlotte had a type of epilepsy called Dravet syndrome, a severe and debilitating form of the disease. Her seizures began when she was 3 months old, and Charlotte failed to respond to numerous types of epilepsy medications, including the ketogenic diet (which was originally developed for children just like her). When Charlotte’s family was told that she “had reached the end of the road” with treatments, Charlotte’s mother Paige sprung into action, diving into research on medical cannabis, where she learned about CBD.
While the Figis lived in Colorado where medical cannabis had been legalized, doctors persuaded Paige not to pursue this line of treatment due to Charlotte’s age–but that didn’t stop her. Paige’s search ended up connecting her with Joel Stanley, the now Chairman of the company Charlotte’s Web.
Paige began giving Charlotte low doses of a sublingual extract from the cultivar and she responded quickly. The number of seizures she experienced dropped by over 90% and she slowly came off of her other medications. Charlotte was also able to catch up in motor development and her behavioral impairments improved significantly.
Charlotte’s story was shared widely and referenced in a CNN documentary by Sunjay Gupta, MD called “Weed.” Her picture ran across industry and mainstream media outlets and Charlotte became the face of medical CBD, which in turn catapulted the consumer CBD movement as well. And none of us would be here without her.
In 2018, GW Pharmaceuticals received FDA approval for its CBD-based medication called Epidiolex®, which is indicated to treat LGS and Dravet syndrome. This landmark ruling was the first of its kind to legalize a cannabis-derived medication and, just recently on April 7, the US Drug Enforcement Agency descheduled Epidiolex®, which will greatly expand access.
Following this positive news, the community received word that Charlotte had died just the following day at 13 years old. While initial reports indicated that COVID-19 infection was cause of death, later it was revealed that Charlotte succumbed to a seizure resulting in respiratory failure and cardiac arrest.
My heart truly sunk into my chest when I came across the news. Where would we be without Charlotte and Paige’s persistence to get the essential medication that her daughter needed? How could we have such progress without them?
We all owe Charlotte and her family a tremendous amount of gratitude for their fight and for sharing their story with the world. I will leave you with a letter from Charlotte’s Web, the company that first shared their healing cultivar with Paige:
“[Charlotte] was a light that lit the world. She was a little girl who carried us all on her small shoulders. Her legacy lives in the garden, in the blooming of ideas, in the fragrance of compassion, in the greenery of nurturing us to be better humans in all ways, always.
What began as her story, became the shared story of hundreds of thousands, and the inspiration of many millions more in the journey of their betterment. Charlotte was and will be, the heartbeat of our passion, and the conviction that the dignity and health of a human being is their right.”
Image Credit: AAron Ontiveroz, The Denver Post
1. Maa E & Figi P. The case for medical marijuana in epilepsy. Epilepsia. 2014;55(6):783-786.