Charlotte Figi, who catalyzed the movement for cannabidiol (CBD) as medicine around the world, died Tuesday. After the family struggled with illness for the past month, the 13 year-old, who had a serious form of childhood epilepsy, was being treated as if she had COVID-19.
An update was posted on the Facebook page of Paige Figi, Charlotte’s mother, on Paige’s behalf: “Our family is grateful for the outpouring of love while we mourn the loss of our Charlotte. Charlotte had a catastrophic form of early childhood epilepsy called Dravet syndrome. We are moved by the continual impact that Charlotte’s life has made shedding light on the potential of cannabis for quality of life.”
In 2013, more than a million people learned Figi’s story, as it was the focus of “Weed,” a documentary by CNN chief medical correspondent Sanjay Gupta. The documentary tells how Figi, who was then 6-years-old, saw a significant reduction in seizures after taking CBD oil. Figi had a severe form of epilepsy called Dravet Syndrome, which, before the CBD, caused hundreds of seizures a week. Gupta credited Figi, in part, with changing his views on cannabis as medicine.
“I have seen more patients like Charlotte first hand, spent time with them and come to the realization that it is irresponsible not to provide the best care we can as a medical community, care that could involve marijuana,” Gupta wrote in his 2013 piece, “Why I Changed My Mind on Weed.” Gupta told Cannabis Wire in September 2019, “When we talked about Charlotte, when we were representing that work, it was always around the medicinal aspect of this: Why couldn’t this be studied like any other compound? What were the barriers to that?”
Figi’s story set off a movement for access to CBD as medicine. The first law to allow for this was passed in 2014, a year during which nine states passed such laws. Not only has that number doubled in the US, but similar laws are being passed around the world.
In 2014, in response to rising demand, the US Food and Drug Administration fast-tracked Epidiolex, a CBD formula for rare forms of epilepsy, which later became the first cannabis extract-based pharmaceutical to be approved by the FDA.
Figi inspired the naming of a high-CBD cannabis plant that was used to provide her oil, which became known as Charlotte’s Web. The family that produced that oil formed a company called Charlotte’s Web, which is now one of the largest CBD companies in the world.
The company told Cannabis Wire that, out of respect for Figi’s family, they “will not be making a comment or speaking with the media at this time.” The founders did, on the other hand, publish a note on the company site, which read, in part, “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.”
Amy Young, who pushed for the passage of Alabama’s Leni’s Law, which was named after her daughter Leni and decriminalized possession of cannabidiol in the state, tweeted on Wednesday, “We are forever grateful to Charlotte and her family for paving the way for Leni. We owe our journey to find what works for her in a large part to their bravery to share theirs. Our hearts are broken.”
The Epilepsy Foundation also released a statement Wednesday: “Charlotte and her family made a huge impact in our epilepsy community and brought hope to families by helping to facilitate access to CBD. She was an inspiration for people with epilepsy and her contribution will never be forgotten.”
