In the expiring moments of the 2014 legislative session Thursday, Georgia lawmakers gleefully threw shredded paper in the air, a tradition signifying the end of business.
In the upper gallery of the House, however, there was a much different show of raw emotion.
Oakwood mother Sarah Caruso was one of several Georgia parents distraught after a law that would have allowed access to medical marijuana failed to be brought for a House vote.
“I’m devastated, heartbroken and angry,” Caruso said. Her daughter Britlyn, 5, suffers seizures and is heavily medicated to manage the symptoms.
The bill would have allowed Georgians to access a strain of cannabis cultivated to have minimal psychoactive properties but high levels of cannabidiol, or CBD. Studies have been hampered by legality, but CBD has been shown to be an effective way to treat seizures, advocates say with far fewer side effects than their narcotics counterparts.
“We’re going to be there next year, and I can guarantee there will be children who have passed away between now and then,” she said. “That is not OK with me, and it is not OK with so many Georgians. The system has failed us.”
Rep. Lee Hawkins, R-Gainesville, served on the House Health and Human
Services committee and heard a great deal of testimony on the issue. He said that the allowance offered a safe alternative for parents trying to help their kids.
“I am disappointed that we could not pass this legislation that would be beneficial and most helpful to those children suffering these terrible seizures,” Hawkins said. “I thought that it was a reasonable approach to provide the CBD ingredient of a particular cannabis plant, which has very, very low levels of THC (tetrahydrocannabinol), I think less than 1 percent.”
The last version of the law sought to establish medical trials in the state on its use for the treatment of epilepsy, as well as glaucoma and chemotherapy symptoms.
Support of the issue gained traction as parents mobilized with the support of Georgia’s chapter of Americans for Safe Access. The group advocates nationally for access to medical marijuana, and the Georgia Action Group focused on pediatric uses of the cannabis strain, which is manufactured in Colorado.
One Georgia child who seems to be responding to the treatment is Haleigh Cox. The 4-year-old and her parents were the faces of the issue in the movement’s fledgling days. Ultimately, the urgency of her condition prompted the family to move to Colorado. Her father still resides in Georgia.
Hawkins, who said that the seizures cause a horizontal jerking of the eye that can render the sufferer essentially blind, has kept tabs on Haleigh’s status.
“From the reports, she is responding to the oil,” he said. “The eye movements have been reduced so greatly that she recognizes her parents and smiles when she sees them. Hopefully the improvements will continue.”
“My prayers go out to her and all children who experience this,” he added.
In crafting the legislation, securing in-state production to acquire the drug proved problematic. One iteration of legislation on the oil came about through an amendment added to another bill by Rep. Allen Peake, R-Macon, as a last-ditch attempt to secure access for parents seeking the oil. That provision would have granted Georgians immunity from state prosecution if he or she violated the law by purchasing the oil out-of-state in a good-faith effort for the specified medical uses.
“People need to realize though that these are federal laws that prevent the interstate transfer of this medicine, this ingredient,” Hawkins said. “This was the framework so that it would be ready to be enacted once the federal law was changed.”
The federal government regulates drugs through the Controlled Substances Act, which does not recognize a medical use of marijuana. Caruso noted that additional hurdle, but said the legislative set-back for their group will only delay treatment if federal law does indeed change this year.
“If federal law changes, we’re stuck, because our state did not allow us,” she said.
Still, Caruso said, it was heartening to watch the issue earn an astonishing show of support.
“We made progress. When we went in, we had people slamming doors. By the end of it, we literally had six ‘no’ votes, and that’s support from both sides,” she said. “Obviously we weren’t triumphant. The bill just got caught up in silly games.”
Those “games” Caruso were referring to involved the politics of pushing issues by attaching them as amendments to legislation set to come to a vote. Sen. Renee Unterman, R-Buford, said the bill would not reach a vote unless it included a provision guaranteeing insurance companies cover early-intervention autism treatment for children, which was previously its own proposed law that passed overwhelmingly.
“She blatantly said on the Senate floor (that) HB885 goes nowhere without the autism bill,” Caruso said. “That’s unfortunate because they are not related in any way. Their bill talks about insurance. Our bill talks about life and death — a life-saving medicine.”
“I’m a full supporter of the autism bill. I have friends who have kids with autism, but the bills were not related.”
Sen. Butch Miller, R-Gainesville, was disappointed that the measures failed, and said concerns on both were adequately addressed, including that a medical cannabis law would not indicate a step toward legalized recreational marijuana use. He said the insurance mandate would be not be a burden on state insurance policies through allocation of funding in the budget.
“I was, and still am, extremely disappointed that both bills did not pass,” Miller said.
Caruso said she and other parents are resolved to keep the momentum going after the election year in a new session.
“We are coming back in 2015. We will be there,” she said. “I want change. Their time has ended, but ours is still ticking.”
Hawkins, who is running uncontested for his seat in 2014, said he believes “we will see this legislation again in some form.”
But for the time being, after many all-day trips to Atlanta, Caruso is grateful to spend time with her daughter, and help her live a full and happy life anyway she can.
“Britlyn has a Make a Wish trip that we’re flying out to tomorrow. Now we’re going to go celebrate her life and just cherish her,” she said.
Still, the thought looms that her seizures will worsen and possibly kill her. Moving to Colorado, like the Cox family, is not an option she has eliminated. But beyond being apart from her husband, her situation is complicated by having shared custody of her two oldest kids from another marriage.
“It’s more than uprooting my life; it’s leaving behind two kids to save one,” Caruso said. “It’s heartbreaking — devastating — to come home and look at your daughter, your son, and know you can’t help them right now.”