Jim "J-Bo" Wages and his wife, Lisa, made the decision a few years ago to wean their daughter off of pharmaceutical drugs, becoming one of the first families in 2015 to qualify for Georgia's then-new medical marijuana registry.
Since then, they’ve seen Sydney blossom. She’s eating more, has better awareness of what is going on around her. Last week, they caught her laughing as her older sister tickled her stomach before bedtime — a reaction neither had seen in years.
The 13-year-old, who has autism and suffers from intractable seizures, has benefited from the state’s medical marijuana law, her parents said. But they are afraid others won’t.
While proponents have sought a broad expansion of Georgia's limited legalization of medical marijuana and found a likely refuge in the state House, the Georgia Senate this year is moving to downsize a key component of the nascent program. In doing so, it has alienated dozens of families and children who use cannabis oil to help treat debilitating conditions.
Senators wanting to reduce the maximum THC level in the cannabis oil now allowed here from 5 percent to 3 percent say the move would bring the state more in line with others that also allow limited forms of the oil. Federal officials continue to classify the oil as an illegal drug.
But the move worries families who rely on it.
"If they cut it back this year, what's to say they won't cut it back again after that?" J-Bo Wages asked, referring to the proposal in Senate Bill 16.
“You have some children who need more than 3 percent,” he said, adding that one “rescue nasal spray” used by some families to ease seizures contains 5 percent THC — which would be illegal under the proposal.
Under the 2015 law, patients and, in the case of children, families who register with the state are allowed to possess up to 20 ounces of cannabis oil to treat severe forms of eight specific illnesses, including cancer, Parkinson’s disease and epilepsy.
The Senate’s proposal would add one more condition, autism, to that list. But only if the allowable THC is reduced.
THC is the component in the drug that makes people high. While there have been no reported problems in Georgia with the state’s low-THC oil program, some senators have expressed concern that the THC percentage is still too high.
Many of the more than a dozen states that have low-THC programs only allow percentages of 1 or lower.
"Georgia is really off the charts," said state Sen. William Ligon, R-Brunswick, who would prefer to lower Georgia's limit to under 1 percent THC. "And we're dealing with a substance the federal government says is illegal."
That view, however, clashes with what some say is the norm, at least for now, for those using or overseeing the use of the oil in Georgia.
Dr. Ben Thrower works with multiple sclerosis patients as medical director of the MS Institute at the Shepherd Center in Atlanta. While the oil generally has not worked for everybody, some patients find it works well for symptom management without the strong sedating effect of standard-treatment pharmaceutical drugs, he said.
He does not want to see the permissible percentage of THC lowered because it could have a direct effect on patients. Some may be fine with an oil at 3 percent THC, he said, but others respond better to cannabidiol with a higher percentage THC. He sees having a greater range of options as a plus, not a minus.
“We feel like we’re going backward” if the THC percentage is lowered, Thrower said. “I don’t see any of my patients getting high right now. Most of my patients want to be functional, they want to be participants in life.”
He also counsels his patients that the oil “is not a cure for MS, but it may be useful for managing some symptoms.”
"To be honest, it's infuriating," said Brian Underwood, whose 2-year-old son, Reid, was born with a rare genetic condition called epidermolysis bullosa (EB). At the slightest touch, Reid's skin blisters and tears. His parents, who wrap him in bandages to protect his fragile body, have reverted to carrying business card-size explainers of his condition they give to questioning strangers (there's also a website, www.crawlingforreid.com).
For Underwood, it's a double-edged sword. Technically, EB is not one of the eligible conditions for legal possession in Georgia. State Rep. Allen Peake, R-Macon, who authored Georgia's original medical marijuana law, is trying to add "intractable pain" as one of several new additions to the eligibility list as part of House Bill 65 — something that would qualify Reid's family to legally possess the oil here.
“His body is wired to deal with pain a lot differently than you or I,” Brian Underwood said of his son, who is currently enrolled in a clinical trial at the University of Minnesota and whose family can spend more than $1,000 a month on the oil Reid takes as part of his treatment. The family has tried to limit his intake of pharmaceutical drugs not the least for side effects — including itching and constipation — that can aggravate Reid’s condition.
But if intractable pain were to make the list, Reid would need a cannabidiol with a higher percentage of THC. Supporters of SB 16, he said, “don’t know what they’re talking about with THC. They have no basis to reduce it.”
Public health officials earlier this month reported that more than 1,300 patients have qualified for Georgia's medical marijuana registry, with nearly 300 doctors actively monitoring their use of the cannabis oil that is allowed here.
The state does not track the specific THC percentage or the specific strain of oil used by each patient, so there is no telling how many would be affected by the proposed drop in allowable levels. What state officials do know is that a vast majority — 68 percent — of patients use the oil for either seizures or because of cancer.
The addition of conditions to the eligibility list seems likely to sway those numbers, although the medical community itself remains unsure about the best path forward.
The Georgia chapter of the American Academy of Pediatrics opposes the addition of autism to the list, for example, because “there’s no science to suggest it’s an efficacious treatment for children with autism,” said the chapter’s executive director, Rick Ward.
Ward has heard what can often be powerful and emotional testimony from parents and patients at the Capitol. But his members worry science has lagged behind those anecdotal stories.
A big sticking point for both policymakers and law enforcement officials in Georgia is the federal classification of marijuana as a Schedule I drug, the most dangerous class of drugs with a high potential for abuse and addiction, and no accepted medical uses, according to the U.S. Food and Drug Administration. Federal officials declined in August to change that classification, a decision that stunned advocates, including those in Georgia who said it would hurt families trying to get those forms of medical marijuana legally allowed in various states.
Many Georgia officials, including Gov. Nathan Deal, have said that the federal classification needs to change before the state’s law can be expanded.
“The FDA didn’t do us any favors last summer by keeping it on Schedule I,” Ward said, noting that the academy had argued for marijuana to be reclassified as a Schedule II drug, a designation that would allow more freedom for sanctioned use of the drug in medical research studies. “We just support these things being studied.”
He points to studies of cannabidiol’s effect on intractable epilepsy that have included ongoing clinical trials in Georgia. Early results of those studies are trending positively, and Ward said that is the type of result that would make his members more comfortable with the oil’s use on other conditions.
The chapter has taken no position on the THC percentage issue, Ward said.
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