The lasting legacy of the young girl who transformed the way we think about cannabis as medicine…
Many of you are a part of the National Institute for Cannabis Investors because you have personally experienced the transformational power of cannabis. You know firsthand the impact it has had on your well-being or on that of people you know.
And much of the good that cannabis enables is a result of the hard work of people at the forefront of its acceptance and use as a viable medicine.
When I think about the frontline of the cannabis-based medicine movement, no one stands out more clearly in my mind than Charlotte Figi.
She was once a five-year-old girl who suffered from 300 epileptic seizures a week.
But that all changed when her desperate mother brought her to another pioneering spirit – Dr. Alan Shackelford.
At great professional risk, he was the first to treat Charlotte with a cannabis strain high in CBD.
Following that first dose, seven days would pass until Charlotte had her next seizure. After increasing the dosage a bit more, she was down to two seizures per month.
Charlotte got her life back and Dr. Alan Shackelford found himself as a leading advocate for cannabis as medicine.
Sadly, as many of you may have heard, Charlotte Figi, the little girl who helped spark the CBD movement, passed away early last month at 13 years of age.
Honoring the Young Girl Who Showed Us the Potential of Medical Cannabis
By Dr. Alan Shackelford
When her mother, Paige Figi, carried five-year-old Charlotte Figi into my Colorado office eight years ago, exhausted and weakened by one of the more than 300 seizures she would have that week, there was no drug I could recommend as an effective treatment.
Charlotte had already failed to respond to 17 different prescription medications and I certainly didn’t want to resort to the powerful horse sedative that some had suggested as a last resort to help this child cope with the ravages of Dravet syndrome.
Little did I know that Charlotte was about to take me – and the world – on a journey of re-discovery of an important drug that will help millions: cannabis.
Despite a tragic lack of research into the medical uses of cannabis, a short time before meeting Charlotte I had read a paper published in an obscure medical journal more than 30 years before. It revealed a possible treatment for Charlotte’s seizures.
After a careful review of her medical history and evaluation of Charlotte – during which she had yet another seizure – I suggested a strain of cannabis that I thought might help her. Charlotte’s mother acquired it at a local dispensary.
To our great relief and frankly, astonishment, it worked, and in dramatic fashion. Charlotte didn’t have a seizure for an entire week, and then for another week. It was seemingly miraculous but we dared not hope that it would last.
However, as time would prove for Charlotte and for the many who would benefit from her experience, it did last. And it changed the world.
“A Truly Remarkable Child”
We are taught in our medical training to maintain a certain clinical and emotional distance from our patients to ensure that we can make objective decisions and recommendations. It was impossible for me to do that with Charlotte. She affected me personally and she affected my medical practice in profound and lasting ways.
First, she was suffering in ways that few others ever experience. She had had two cardiac arrests, and the unrelenting seizures prevented her from developing and maintaining the skills other children and their parents take for granted. Skills like eating and drinking, walking, speaking, and interacting with her siblings and parents.
It was tragic and I desperately wanted to help her and her family who were also suffering.
When she responded so dramatically to the cannabis extract and was able to make up for lost time in many ways, she revealed who she was – a truly remarkable child.
She was a bright light without equal. Her laugh and her incredible spirit touched not only me but millions of others. She helped me to move in new directions in my clinical practice and in research, and I will be forever grateful to her.
Charlotte passed away on April 7, but she won’t be forgotten. Her story is a global one, told by Dr. Sanjay Gupta on CNN, on TV New Zealand and 60 Minutes Australia, in articles in the New York Times, the Manchester Guardian, The Globe and Mail, and many more.
Charlotte’s Lasting Legacy
“It is folly to limit scientific research on cannabis merely because it was arbitrarily classified as a substance ‘with no…accepted medical use’ and ‘a high abuse potential’ by a discredited American president nearly 50 years ago.” – Dr. Alan Shackelford
Although Charlotte still had Dravet syndrome, her dramatic improvement helped start a global awakening to the untapped potential of medical cannabis. Governments around the world are now opening up to new ways of helping patients like Charlotte by passing laws allowing the use of cannabis as a medical treatment option.
Medical cannabis programs are now in place in 33 states in the United States, in Canada, and some 30 other countries worldwide. Millions of patients are experiencing the benefits of medical cannabis every day in places where the medical needs of suffering people are not being effectively met by conventional treatments.
Charlotte’s legacy lives on, not only through that fateful encounter in my office so many years ago but in our deepening understanding of how much more needs to be done to realize the full potential of cannabinoid-based medicine.
Charlotte’s legacy should be a recognition by governments – especially in the U.S. – that it is folly to limit scientific research on cannabis merely because it was arbitrarily classified as a substance “with no…accepted medical use” and “a high abuse potential” by a discredited American president nearly 50 years ago. That absurd stance is fraught with negative consequences for patients who could be benefitting from cannabis-derived medications.
Charlotte’s legacy should live on in the allocation of appropriate funding for scientific inquiry into the already obvious medical benefits of cannabis, rather than focusing on social harms caused by the indiscriminate use of marijuana.
Blazing the Trail for Cannabis-Based Medicine
It is scandalous that between 2008 and 2014, $1.1 billion out of the $1.4 billion that was allocated for the study of cannabis was spent on researching the rarely seen addiction to cannabis or its withdrawal symptoms, not the plant’s clear medicinal potential.
In contrast, only $297 million was spent on researching potential benefits like the anti-cancer effects of THC first reported in a scientific paper from the National Institutes of Health (NIH) in 1975.
Had it been left up to the government, the incredible benefits experienced by Charlotte would never have been studied. In fact, in early 2013 a highly placed director of a U.S. government agency told me that research on cannabis would never be allowed in the United States.
Charlotte’s legacy will live on in the lives of other children who will be seizure-free, of the cancer patients whose nausea and pain are controlled better and with fewer side effects than with opiates and other frequently ineffective drugs.
Her legacy lives on through the lives of patients whose arthritis, Parkinson’s disease, and Crohn’s disease are no longer impacting their lives like before.
The wave of acceptance and discovery that Charlotte set in motion should be acknowledged and championed, especially as we all are confronted with the coronavirus pandemic.
Who knows whether cannabinoids might have been beneficial in combating the infection? There are tantalizing hints in the medical literature that they might be, but it is nearly impossible to study it in the U.S.
We must continue to explore and discover new and effective treatments derived from cannabis for medicine’s most challenging therapeutic dilemmas.
We owe that to Charlotte, who helped us blaze the trail.
[Dr. Alan Shackelford continues his investigation into the medical benefits of cannabis. He has treated more than 25,000 patients in the past 11 years and is now developing cannabinoid medicines for wider use.]
Don Yocham, CFA
Executive Director, National Institute for Cannabis Investors
15 responses to “Honoring the Legacy of Charlotte Figi: A Letter From Dr. Alan Shackelford”
May 11 2020