Hope came Thursday for families whose children suffer from epileptic seizures, as the chairman of a key legislative committee agreed to file a bill to legalize the medical use of marijuana that has a high content of the chemical compound cannabidiol.
“Our work is only beginning,” said Rep. Matt Gaetz, R-Shalimar, after the House Criminal Justice Subcommittee heard testimony for nearly two hours from parents of children who live in Miami, Weston, Tampa, Pensacola and even Colorado.
The families pleaded with lawmakers to legalize strains of marijuana such as “Charlotte’s Web,” saying it is their last, best hope of relieving the uncontrollable seizures in their medically fragile children. The strain is high in cannabidiol or CBD, the ingredient that controls seizures, but is low in tetrahydrocannabinol, THC, the compound that creates a high.
They spoke of the anecdotal evidence that children treated in Colorado have had their seizures reduced by half or more. They cited studies that show that cannabis with a high cannabidiol content has no side effects and is not addictive. And they spoke of being faced with the decision of leaving Florida to get treatment for their child.
“I am going to ask Speaker [Will] Weatherford to approve a proposed committee bill that will contain this language for Charlotte’s Web,” Gaetz announced at the conclusion of the meeting, “so that these people do not have to be criminals.”
It was a remarkable admission for a legislator who opposes the use of medical marijuana and was so wary about scheduling a workshop on the subject that he tucked it into an agenda on sentencing reform.
But a combination of the compelling family stories, and Gaetz’s aggressive attack on every doubt raised, left the committee with few reasons to oppose it.
“I’m moved by the compassion of all of this,” said Rep. Charles Van Zant, a Palatka Republican who is a Baptist preacher and one of the most conservative members of the Legislature.
He opposes marijuana, he said, but when it comes to harnessing the herb to treat a specific malady, “I don’t think this is substance abuse. I think it’s using this wisely.”
Gaetz opened the meeting with a partial showing of a CNN special report by Dr. Sanjay Gupta, Weed, which introduced the nation to the story of Charlotte Figi, a girl from Colorado who suffers from Dravet Syndrome, a rare and intractable form of epilepsy.
Charlotte’s mother, Paige Figi, told the committee that after two years of being treated with oil from the Charlotte’s Web strain, her daughter’s seizures have gone from hundreds to about one a week. Charlotte, whose illness had delayed her development, is now walking and talking and is able to ride a bike.
“There were nights where I begged for her to pass away from this suffering because it was so awful,” Figi said. Now, “she has a happy qualify of life. She’s not going to ever drive a car, get married or live independently” but “she’s a kid again.”
Gaetz said that he, too, was a skeptic but compared the strain and its trace amounts of the psychoactive THC to the hemp products that line the shelves of the local Whole Foods store.
Rep. Gayle Harrell, R-Stuart, was among the most vocally skeptical of the 14-member committee. Harrell’s husband is a physician, and she is a longtime supporter of the Florida Medical Association.
“What pre-clinical trials have shown the efficacy of this drug?” she asked.
Figi responded that scientific trials are under way in Colorado, but, because marijuana is still classified as an illegal narcotic in many states, “the road blocks are almost nearly impossible. . . . We are asking for help to do more research.”
Several families urged the committee not to wait the years it will take to conduct clinical trials.
“Rep. Harrell, we don’t have a year,” said Seth Hyman of Weston, who brought his 8-year-old daughter, Rebecca, who suffers from a rare genetic disorder, to the meeting. “She may not be here.”
Jacel Delgadillo of Miami said she is considering leaving her extended family and relocating to Colorado, where marijuana use is legal, so she can get help for her 2-year-old son, Bruno, who suffers from Dravet Syndrome.
“Every night I hold his hand praying: Please don’t be the night for him to gain his wings,” she said, her sleeping son on her shoulder.
But a bill that legalizes any use for marijuana faces some harsh realities in Tallahassee, where legislative leaders, the governor and attorney general have come out against a ballot initiative to legalize marijuana for medical use and are challenging it in court.
When asked about allowing parents of children who have seizures to have access to a special strain of medical marijuana, Gov. Rick Scott shut the door.
“I oppose illegal drug abuse,” he told the Tampa Bay Times on Wednesday. “I've watched what it does to families. I think the attorney general has done the right thing with the advice she gave the Supreme Court. Have a great day!”