Two years ago, Paige Figi’s daughter Charlotte suffered hundreds of seizures a day. Prescription drugs did nothing but provide severe side effects.
Now, Charlotte is 99.8 percent seizure-free, Figi said, thanks to one simple thing: medical marijuana.
Figi, a Colorado mother and activist, told Georgia legislators Monday that Rep. Allen Peake’s plan to legalize a single compound derived from marijuana will save the lives of patients suffering from certain seizure disorders.
“They will not live to adulthood” without it, Figi told the Georgia House Health and Human Services Committee. “They will die from these syndromes.”
The committee will hold a second hearing on the bill Thursday. No vote was taken Monday.
Peake, R-Macon, has proposed House Bill 885 that would create a strict set of guidelines to allow certain patients suffering from seizure disorders access to cannabis oil. Peake said he was prompted to introduce the bill after meeting a Macon girl who suffers from seizures that no legal medicine has helped.
Joel Stanley, co-founder of Realm of Caring Foundation, has bred the particular strain of marijuana that creates the cannabis oil now known as Charlotte’s Web, after Figi’s daughter.
Stanley said his operation follows strict Colorado regulations for plant cultivation and Food and Drug Administration practices for manufacturing plant-based nutritional supplements.
The cannabis oil used in Colorado is very low in THC, the chemical compound that gets a marijuana user high, Stanley said.
“That oil is a known quantity,” Stanley said. “These families behind me, many of them have exhausted pharmaceutical options. The parents behind me, the folks behind me in general are just people who love their kids. They’re not pot activists and neither am I.”
Aaron Keplinger’s son Hunter suffers from seizure disorders and tried more than a dozen drugs to no avail.
Hunter’s days were wildly, and horribly, varied.
“Screaming 24 hours a day. Sleeping 24 hours a day, awake 24 hours a day,” Keplinger said.
Then he heard about Paige Figi and her daughter. He and his family moved to Colorado, and Hunter is taking Charlotte’s Web and today is largely seizure-free.
“It’s not getting him high, it’s just getting him well,” Keplinger said.
Peake’s bill has gained the support of the Medical Association of Georgia, the state’s largest group of physicians. Dr. Mike Green of Macon, a member of the group’s board, said they are convinced “this is not a recreational drug. This is not a euphoric drug. I would posit this is not marijuana. This is an extract from a plant.”
But Dr. Robert Flamini, an Atlanta child neurologist who is studying child seizure disorders, warned that much is still not known about cannabis oil.
“We do not have guidelines for appropriate dosing, and we do not have details of potential side effects,” Flamini said.
The federal Food and Drug Administration has authorized trials of an established British drug, Epidolex, that comes from marijuana. Sue Rusche, president of the Atlanta-based National Families in Action, said Epidolex offers a much better option.
The makers of Charlotte’s Web, she said, “cannot guarantee Charlotte’s Web that it is free of pesticides, mold” and other impurities. “It has not been tested in animal trials.”
Children, she said, should “have the right to an experimental drug that is pure, that is free of contaminants that can hurt them and is safe for them to take in FDA trials.”
Earlier Monday, Julianne Thompson, the co-founder of the Atlanta Tea Party, and Kay Godwin of Conservatives in Action, announced they, too, would support HB 885.
