The News Courier in Athens, Alabama

State and Nation

March 20, 2014

Legislature approves 'Carly's Law'

Bill awaits governor's signature; Bentley says he will sign after legal advisers' review

— MONTGOMERY  — Parents with children suffering severe seizures defied the odds Thursday to get the Alabama Legislature to approve a bill allowing the use of a marijuana derivative to try to control the seizures.

Pelham police officer Dustin Chandler started pushing the bill to help his 3-year-old daughter Carly and other children suffering from severe forms of epilepsy and other illness causing frequent seizures. He was joined at the Statehouse by other parents and their ill children. Legislators told them repeatedly that major bills don't pass the first year they are introduced, and a bill mentioning marijuana would be especially hard to pass in a year when the Legislature is up for election.

But the bill went through the Senate and House without a dissenting vote and received final passage Thursday when the Senate voted 27-0 to go along with minor changes the House made to it. It now goes to Gov. Robert Bentley, who plans to sign it after it is reviewed by his legal staff.

“It’s like a miracle. This does not happen in Alabama. We are the most conservative state,” said Gena Dalton of Madison, an East Limestone High School graduate whose 20-month-old daughter Charlotte has Dravet Syndrome and suffers about 300 seizures per month.

“If we can cut some of those down, it will be great,” she said as her daughter played nearby.

The bill authorizes the University of Alabama at Birmingham’s Department of Neurology to do a study of the marijuana derivative cannabidiol, or CBD oil, to treat severe seizures. The Legislature is providing $1 million to the university to fund the five-year study and determine the effectiveness of cannabidiol. Participants in the study who are prescribed the marijuana oil will have legal protection from state criminal charges.

The study cannot proceed until UAB gets approval from U.S. Food and Drug Administration and the Drug Enforcement Administration. The chairman of UAB’s Department of Neurology, Dr. David Standaert, said Thursday the university will begin the regulatory steps to create the cannbidiol program.

“This research will be invaluable in the search for ways to prevent seizures, or minimize their effects, and UAB will continue to work with neurologist across the state to identify and treat patients in need of this therapy,” he said.

The oil does not get users high and anecdotal evidence suggests it is an effective treatment in reducing seizures.

Chandler worked on the legislation with Republican Rep. Mike Ball, a retired state trooper from Madison; Republican Rep. Allen Farley, a retired assistant sheriff from Jefferson County; and Republican Sen. Paul Sanford, a barbecue restaurant owner from Huntsville. They became known as “the three cops and the barbecue guy.” Chandler said having law enforcement involved helped get others interested.

Then the families started coming to the Legislature repeatedly to put a face on the bill. Legislators started calling it “Carly’s Law.”

The turning point, Chandler said, was when House Speaker Mike Hubbard, R-Auburn, got UAB involved, which ensured the marijuana oil wouldn’t get into the wrong hands.

“There is no way you could write a better script for this,” Chandler said.

Carly started having seizures at just eight weeks old. She was eventually diagnosed with CDKL5, a rare genetic disorder. She cannot talk or walk, but her parents hope the oil with help control her seizures and improve her cognitive functioning. Amy Chandler said reducing the number of strong anti-seizure medications in her system every day “alone may show us a different child.”

Asked her dream for her daughter, Amy Chandler said “to hear her speak more than anything.”

“We haven’t heard this child call us Mommy or Daddy.”

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