NoCo9 Speaker Spotlight Series: Three Years After Her Daughter’s Death, Paige Figi Continues Fight for Safe Access to CBD
Figi, whose advocacy on behalf of her daughter Charlotte began the CBD movement, spoke to Let’s Talk Hemp at NoCo9 in Colorado Springs.
How did you become interested in hemp?
In 2010, I found myself in a tragic situation: My daughter Charlotte was in hospice with Dravet Syndrome, intractable epilepsy. She was 4 years old and for her whole life had been constantly seizing. We had tried all the meds more than once. She could not walk or talk and was unconscious on a feeding tube.
I started researching and discovered work being done with cannabidiol (CBD) on mice; scientists had found it was an effective anticonvulsant. I hired a translator and started calling Israel, France and Brazil to ask for dosing. I calculated these numbers to one small human and began to look for somebody, anywhere, with plants that had the correct ratio of CBD to THC. I made hundreds of calls and would ask for five more names at the end of each call. I was looking for anybody who might have the flower I needed.
One of the names I got when I was at the end of my rope was Joel Stanley. He and his six brothers had been growing and breeding cannabis at the back of their greenhouse in Louisville, Colorado, to help their uncle with cancer. He didn’t know about epilepsy, but I told him all my data and research. I was looking for this exact number ratio of CBD to THC and he had it, unmanipulated, in a plant. I needed to know whatever we gave her we could replicate to have the exact same doses. Joel cloned the plants and was able to get consistent results.
Charlotte was the first child to get a medical cannabis card in Colorado. I fought for our right to try cannabis medicine. Charlotte was the perfect guinea pig because she had so many seizures and no quality of life. We had exhausted all medical possibilities. She was not awake and aware. She had a life-limiting illness.
Joel made the first dose and I put it into Charlotte’s feeding tube. She stopped seizing immediately and she did not have a seizure for seven days. It was incredible. No pharma drug had stopped her seizures in four years and high CBD cannabis stopped them right away. After about seven months she was off all her pharma meds that were not working anyway. We had determined her therapeutic dose on the CBD and her seizures were 99.8% controlled. She went from 350 seizures a week to one per month and remained there for nine years until her death. She started walking, she could talk and she went to school. It was outrageous! She had not been able to walk or barely to breathe.
She never went to the hospital again.
After 18 months of her treatment, I told the story of Charlotte’s healing on Sanjay Gupta’s 2013 “Weed” show on CNN. I had no idea thousands of people would see the show and get in the car and come to Colorado to get medical cannabis for their children.
We started Realm of Caring, a 501(c)3, to support families coming to Colorado, collecting data and doing observational research. We helped people figure out dosing, figure out where to live. Some families had never been able to be in a social situation with a child who had seizures. We would have bonfire parties that would hold us all together. We watched our kids get better. When we saw it working, I remember a feeling of outrage that WE need to figure this out. This was known research. I’m not the smartest person in the room, why does it have to be me? I was so angry.
Tell me about Coalition for Access Now
Charlotte got better and became a child who could walk, talk and go to school. She had special needs, but they were not medical. So, in 2015, I started the Coalition for Access Now, a 501(c)4, to pass medical cannabis laws. The first ones in conservative states were CBD only. We passed 26 CBD bills. I wanted legislators to move as quickly as possible. Suffering was ending for all these kids.
The first federal bill for CBD in 2015 was H.R. 1635, the Charlotte’s Web Medical Hemp Access Act. The bill decoupled CBD from marijuana. That part passed.
The second part of early bills was to regulate CBD, by the FDA, as a dietary supplement. That is what we are still working on. The 2018 Farm Bill gave us access, now we want safe access. We want safe and honest labeling.
What are your goals for 2023?
I want H.R. 1629 – the Hemp and Hemp-Derived CBD Consumer Protection and Market Stabilization Act of 2023 — passed by December. It will not happen next year in a general election. This year it’s possible. The good thing is that in all the time I have worked on this issue I haven’t failed — nobody has said no and slammed the door. But we need them to act — we need to get more co-sponsors to sign on. I have passed so many bills in so many states. I think we can do it federally. We know this works; we need to work together to pass the bills. I am deeply ashamed that parents of kids with epilepsy are still fighting.
I vowed to get this safe access bill passed years ago and it’s important to finish what I started. Charlotte has died. I need to do this for others. Forty-six million Americans are taking CBD. They should be able to get safe products that are tested. Who knows what is in the gas station products. Consumers deserve a fair shake with a product that can help them.
I got nine years. I got to know my child. It was worth it. And I want to finish the job.