SEATTLE -- The case for cannabis: That’s what Meagan Holt calls her 5-year-old daughter, Madeline.
Maddie has Zellweger Syndrome, a terminal genetic disease that destroys the white matter in her brain.
When Maddie was just 2 years old, doctors told Holt to take her out of hospice and spend one final night with her.
“That night, I had no hope,” Holt said. “The people that were supposed to be there to help me -- the people I was told to trust to take care of my child -- told me there was nothing left for her.
“It was up to me to make a choice: To do what the doctors said and spend one night with my baby or to take a chance to risk everything I have to help her be a little bit more comfortable.”
That was three years ago. With the help of cannabis, Maddie has made it past her fifth birthday. Before being treated with cannabis, she was on 26 pharmaceuticals at one time. Now Maddie takes just two.
Holt knew that as a mother administering cannabis to her toddler, she’d be stigmatized. She’s here to fight that.
“Maddie doesn’t use hemp oil,” she said. “Maddie uses high THC cannabis oil. And no it’s not getting her high. The pharmaceutical drugs that were prescribed to her, those were getting her high.”
Three times a day, Holt injects doses of THC and CBD, or cannabidiol, into Maddie’s feeding tube.
CBD is also found in Epidiolex, which could become the first marijuana-based drug to be approved by the Food and Drug Administration.
An expert panel unanimously voted to recommend approval by the FDA. The FDA will make that final determination in June.
“Where its applications are going to expand, only time will tell,” said Dr. Edward Novotny, the epilepsy director at Seattle Children’s Neurosciences Center.
His department has been using Epidiolex in clinical trials for kids with Dravet Syndrome, a severe form of epilepsy. He says for children with Dravet and Lennox-Gastaut syndromes, many of them do not respond well to normal medications and can in fact worsen with them. His department has found that CBD can alleviate symptoms with minimal side effects.
“Having that available for families who have these conditions, to have that as an option to be involved in these trials, is important,” Novotny said.
Yet he understands regulating drugs takes time, particularly when it involves a Schedule I drug under the Drug Enforcement Administration. Schedule I drugs are considered drugs with “no currently accepted medical use and a high potential for abuse.”
“That is going to be some of the regulatory hurdles to ultimately get it approved,” Novotny said of the CBD in Epidiolex.
While Holt chooses to go the natural, whole-plant based route with Maddie, she is optimistic about the FDA getting on board with cannabis medications.
“I think that they will move forward but I also think the only way it’s going to happen is by people like me and Maddie standing up and saying, ‘Hey, we exist and we matter,’” Holt said.