What’s next for Carly’s Law?
By MOLLY DAVIDSON / Staff Writer
PELHAM—After months of hard work from families and lawmakers across Alabama and unanimous approval from the State Legislature, Governor Robert Bentley signed Senate Bill 174 into law on April 1.
Also known as Carly’s Law, the bill allows for the clinical study of cannabidiol oil, a derivative of the cannabis plant, for the treatment of severe seizure disorders in individuals for who other treatments have failed, and allots $1 million for research and study at UAB.
“The political side is over,” Gena Dalton said. “We’re waiting for signals from UAB.”
Dalton’s toddler daughter, Charlotte, suffers from Dravet Syndrome, a rare and severe form of epilepsy, and may benefit from CBD oil treatment.
Carly Chandler, daughter of Pelham Police officer Dustin Chandler, is another child who could be helped by CBD oil. Her family has tried many options, but none have worked to treat her CDKL5, an extremely rare genetic condition that causes multiple seizures each day.
“The work now is really with UAB,” Chandler said. “Now we have to let UAB know our expectations and intentions as parents.”
Both Chandler and Dalton expressed a desire for an open trail-type study, encompassing as many people as possible, rather than a limited or placebo-control study.
“We really lobbied hard to keep the study open, we didn’t want a limited study,” Dalton said. “We hope they allow any child that qualifies to participate.”
Although Carly’s Law does not go into effect until June 1, doctors at UAB are already working to design a study, and in these early stages, it appears to meet Dalton and Chandler’s expectations.
“It will be an observational study,” co-director of the CBD oil study at UAB Dr. Jerzy Szaflarski said. “All those who qualify will be studied to assess their response [to the drug].”
However, Szaflarski warns this is “not a simple or speedy process.” The study must be approved by the FDA, DEA and IRB, and CBD of “sufficient purity” must be obtained. Even so, he said he expects to “begin prescribing CBD” in the “late summer or early fall.”