Researchers want to know if there is medical proof the oil can help children with severe seizure disorders. His mother calls it a “miracle drug” and she believes it will save his life.
Valerie Weaver gets her son Preston off the school bus every day. She always asks how his day went. The first grader only responds with sounds, not words.
"There’s not really ever been any major communication between us, you know, or with him at all,” Weaver said.
Weaver adds her son has up to 80 seizures a day and he’s tried dozens of medications that haven’t worked. But she’s hoping that will change thanks to a trial medication.
"I knew this could feasibly be something that would save his life and give him a better quality of life."
Preston is the first patient in the state to received the marijuana based drug Epidiolex through a clinical trial at Georgia Regents in Augusta.
"You had no fear about putting Preston on a trial medication?" 41NBC’s Amanda Castro asked. “Absolutely not. Not a doubt in my mind,” Weaver answered.
Preston got his first dose of the cannabidiol oil on December 30th. Researchers hope to better understand how Epidiolex can help children with severe seizure disorders.
"We can learn more about the medication, not only how effective it may be, but also potential undesirable outcomes,” Dr. Michael Diamond, the Vice President for Clinical and Translational Sciences at GRU said.
Governor Nathan Deal supported the research effort last year after a bill to legalize cannabis oil failed to pass. Dr. Diamond is overseeing the clinical process.
"I hope we will learn more about the potential efficacy and safety of cannabidiol and learn potentially more about which children may or may not benefit,” he said.
Preston is one of two children who will receive Epidiolex. Children from Augusta, Savannah, and Atlanta are already enrolling in a larger 50 patient study.
The trial is costing the state $5 million. Dr. Diamond says it is an investment in both time and money that is necessary.
"I think there is definitely many children whose seizures are not able to be well controlled with medications that are approved,” Dr. Diamond said. “The question will be is cannabidiol going to be the product that is able to help some of them to achieve that end?"
Weaver spends a few minutes everyday prepping Preston’s medicines.
"I’ve got to crush them up, and turn them into a liquid to be able to get them into his G-tube because he can’t take anything by mouth."
She holds the Epidiolex in her hands and calls it “our miracle drug, I’m hoping.”
Weaver hopes to take Preston off three anti-epileptic drugs and two prescribed medications he takes daily, leaving him only with Epidiolex.
"Maybe the Epidiolex can control it completely,” Weaver said. “That would be fantastic if we could get that to happen."
Weaver cannot talk about the changes she has seen in Preston since he started taking Epidiolex because of the ongoing study. But she is hoping it will give him a better quality of life.
"Do you know what I would do just to hear him say mom? I’ve never heard it and he’s seven years old. It would be just completely huge to me just to hear that,” she said.
She wants that same opportunity for all Georgia families who could benefit from cannabis oil.
"Everyone needs this option, they need the chance to try it."
State lawmakers are working to pass House Bill 1. It would decriminalize cannabis oil. It also takes growing and distributing the oil in state off the table this year. Weaver says the revised bill is a step in the right direction, but it is not enough.
"It’s against federal law to cross state lines with it, so you’re asking all these families of special needs children to commit a federal offense to get medication for their children,” Weaver said. “That doesn’t even make sense."
Lawmakers are confident the bill will pass. During his State of the State address last month, Governor Deal said he hopes to sign the legislation this year. But he wants a committee to review how the in-state cultivation process with work, from seed to sale.
"I want us to answer the question of access as quickly as we possibly can, while going through the proper steps to ensure safety and compliance with federal laws,” Deal said.
While she is grateful Preston is getting the help he needs right now, Weaver says she won’t stop fighting until everyone has access.
"There is no reason that Georgia can’t get this passed as an option for people that are suffering."
GW Pharmaceuticals makes Epidiolex. The company tells 41NBC the drug shows promise and it hopes to get FDA approval in a few years. If that happens, Epidiolex would be available to anyone with a prescription, even if the state doesn’t have a medical marijuana law on the books. It could also be covered by insurance.
House Bill 1 legalizes an oil form of medical marijuana that is high in CBD, a medicinal property of the plant, and low in THC, so the patient cannot get high. Patients must meet one of the 17 qualified medical conditions, which include cancer, AIDs, ALS, and seizure disorders.
Once signed into law, families can have the oil in the state without fear of prosecution. The bill’s sponsor, Representative Allen Peake, says he is still figuring out how they can get access to it without breaking federal laws.
The Georgia Commission on Medical Cannabis Regulation would also be created to establish a growing and distributing model in the state.
Some state law enforcement groups have come out in opposition of the revised bill. They’re worried it is much broader than what was originally proposed.
The Georgia Sheriff’s Association sent 41NBC the following statement:
“First, the sheriffs will aggressively oppose the legalization of marijuana for recreational purposes whenever such legislative proposals emerge. They have heard the pleas of families with children suffering seizure disorders and support the use of physician recommended low level THC cannabis oil for these children which is administered orally, not through any method or means of smoking. The sheriffs appreciate the commitment shown by Representative Peake on this issue, but do not agree other medical conditions should be included under HB 1 without more conclusive research. The sheriffs are not "fighting" Representative Peake’s bill, but they certainly have the right to express an opinion on the matter.”
The Prosecuting Attorneys’ Council of Georgia agrees. The executive director of the organization, Chuck Spahos, tells 41NBC it includes a “laundry list” of medical conditions. He says there are no standards for these other diagnoses. Spahos adds there are other drugs that can help treat these different conditions.
A House committee heard from both supporters and opponents of the medical marijuana bill this week. Representative Peake expects a vote on Monday.