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There was a standing ovation in the Alabama House Thursday for little Carly Chandler and her family. Her parent's fight for access to a derivative of marijuana is now nearing the finishing line.
A bill named after the three-year-old child passed the House and Senate unanimously and is now on its way to the governor. It would allow a study of cannabidiol, better known as CBD, which is the oil from a marijuana leaf. The oil is believed to reduce seizures in children like Carly.
Carly's epileptic seizures happen three to five times a day. Upwards of ten medications have failed to stop the seizures and her parent's say CBD is Carly's last resort.
"From Carly through me to you guys, she thanks you for giving her a chance. That's all we ever asked for is an opportunity to try another treatment and give these kids a better quality of life," Carly's father, Justin Chandler, told members of the House during an impromptu celebration with lawmakers Thursday afternoon.
The oil does not provide a high for users and neurologists say there's growing evidence that it helps control epilepsy and other neurological disorders that produce serious, debilitating and life-threatening seizures that cannot be controlled with other therapies.
If passed, Carly's Law would fund a $1 million University of Alabama at Birmingham study on the effectiveness of using marijuana oil to control seizures.
The bill authorizes and funds the UAB study that would allow those who need CBD oil to participate and therefore have access to CBD oil from other states. The legislation means children with severe seizure disorders can be a party of the U-A-B study and receive the oil without fear of breaking the law.
Justin Chandler is a police officer in Pelham, outside of Birmingham, and refuses to break the law that's why he reached out to Rep. Mike Ball of Madison, a law enforcement colleague, to help make this medication a reality. Parents of children with similar disorders have joined Chandler and have been lobbying lawmakers for months.
"It turns out that Alabama, I believe, is perfectly postured to be a pioneer on this substance. We are on the path to unlocking the potential for this CBD oil," Rep. Ball said.
He told WSFA that there were a lot of hurdles to overcome in order to move the legislation forward.
"I had people who didn't' want to be associated with marijuana. They hear the word marijuana and they just shut down. They think about pot smokers. They don't think about medicine and that was a problem. Then there was the medical marijuana people, some of them were difficult because they said, 'This isn't enough, what about us? We want to smoke pot and this doesn't do that.' So what happens is, the word marijuana comes up and it creates a lot of noise that people couldn't hear through," Ball said.
Both Justin Chandler and Rep. Ball credit Alabama House Speaker Mike Hubbard with helping the bill advance.
"There's so many kids and so many people in Alabama that are going to benefit from the passage of this and having UAB and Children's Hospital to be able to look at it, and take them under their wing and help these kids out, that's a huge deal so it's going to be a process and it might take a while. We've made it to the 50 yard line and we just have to take it the rest of the way with them," Chandler added. "I think this is going to open up a lot of avenues for a lot of people, Carly included."
Governor Robert Bentley is expected to sign the bill into law.
"If it has within the bill what I asked to be within the bill, which was to have an entity like UAB do a very good study as far as the use of this particular substance. We are for finding any new medications that may be available out there to help children or adults, especially those with status epilepticus. This is certainly a possibility," he said in a recent interview.
The Epilepsy Foundation is calling for an to the Drug Enforcement Administration's restrictions that limit clinical trials and research into medical marijuana for epilepsy and applauds recent decisions that have allowed clinical trials of CBD oil to begin in several states.
Dr. David Standaert, Professor and Chair of the UAB Department of Neurology, says that if Carly's Law is enacted, the Department of Neurology's Epilepsy Division will take steps to create a cannabidiol program. A program manager will be hired to administer the research and clinical protocols, and an advisory committee of UAB neurologists, pharmacists, pediatric neurologists and community representatives will be established to oversee the program.
"UAB has a special responsibility to provide access to cutting edge treatments and therapies that are not available elsewhere," Standaert said in a statement. "This research will be invaluable in the search for ways to prevent seizures, or minimize their effects, and UAB will continue to work with neurologists across the state to identify and treat patients in need of this therapy."