A young girl whose lifelong battle with seizures helped changed many minds about the value of medical marijuana died Tuesday from the coronavirus at the age of 13.
News of Charlotte Figi’s death was posted on her mother Paige’s Facebook page by a family friend. In late March, five members of the Figi family, including Charlotte, got sick and were self-quarantining in Colorado. The Colorado Sun reports that the family had not been able to get tested to determine whether they had been infected with COVID-19. But an organization that Paige belonged to confirmed today that Charlotte’s death was due to the coronavirus:
This is Nichole writing to update you for Paige, Greg and Matt. Charlotte is no longer suffering. She is seizure-free forever. Thank you so much for all of your love. Please respect their privacy at this time.
The Facebook post was updated Wednesday afternoon with more details about Charlotte’s death. A COVID-19 test actually came back negative at one point but she is nevertheless being treated as a likely COVID-19 case:
Charlotte had a seizure in the early morning on April 7th resulting in respiratory failure and cardiac arrest. Seizures are not uncommon with illness and paramedics were called returning us to the PICU. Given our family’s month-long history with illness and despite the negative test results, she was treated as a likely COVID-19 case. Her fighting spirit held out as long as it could and she eventually passed in our arms peacefully.
Charlotte spent much of her life fighting Dravet syndrome, a very rare form of epilepsy that causes children to suffer from long, recurring seizures and resists most medical treatment. About 15 percent of children with Dravet syndrome don’t survive to adulthood.
Charlotte’s fight to control her seizures became a national story when the family reported that treating Charlotte with cannabidiol oil, more commonly known as CBD, dramatically reduced her seizures. Paige connected Charlotte with medical marijuana producers in Colorado, run by the Stanley brothers, and they developed a strain of cannabis with high levels of CBD, which they made into an oil. That medical marijuana dispensary subsequently named their strain (and later, their whole company) Charlotte’s Web after her.
The success of Charlotte’s treatment drew families from across the country to Colorado from other states where leaders were dragging their feet on legalizing medical marijuana use. While Charlotte’s story was known both to those who followed medical marijuana trends and to families with children struggling with epilepsy, her story became national news in 2013 when CNN reported on her case and the network’s chief medical correspondent, Sanjay Gupta, reversed his position and declared his support for marijuana as a medical treatment because of Charlotte.
When Charlotte was born, only a handful of states permitted the use of marijuana for medical purposes. Now in 2020, only three states maintain complete bans—Idaho, South Dakota, and Nebraska. And there’s a ballot initiative in Nebraska for consideration in November to amend the state’s constitution to permit it.
Paige Figi founded the nonprofit Coalition for Access Now, which works to educate Americans about the value of marijuana and CBD oils as a potential treatment for health problems and advocates for changes in the law to allow for legal consumption.
While legal changes are still a fight, especially on the federal level, it’s safe to say that the Figi family and Charlotte have succeeded wildly in helping change Americans’ view of the value of CBD oils. Now, CBD goods have become trendy—maybe a little too trendy, given those who want to attempt to treat it as a miracle cure for just about anything. The Food and Drug Administration is sending out letters warning CBD companies to stop telling people that their products will protect users from COVID-19. And state governments persist in meddling unnecessarily in the use of CBD in foods and beverages.
It’s a tragedy that Charlotte didn’t make it to adulthood to fully appreciate how much the Figi family’s hard work has helped change the landscape for marijuana policy. More children in Charlotte’s situation now have easier access to treatments that can ease their suffering. More research is happening, too, to determine what cannabis can actually do as medicine.
America is a different place now—and a much, much better one when it comes to drug policy—because of the pivotal role played by Charlotte Figi and her family.
This post has been updated with additional information provided by the family about how Charlotte died.