Parents call on legislators to allow pot-based oil for children’s seizures

Tom Reel / San Antonio Express-News -    Chuck Sparks sits with daughter Shelby Sparks, who has Dravet Syndrome, a rare and severe form of epilepsy, during a Texas House committee hearing about legalizing cannabidiol oil.

Tom Reel / San Antonio Express-News -    Chuck Sparks sits with daughter Shelby Sparks, who has Dravet Syndrome, a rare and severe form of epilepsy, during a Texas House committee hearing about legalizing cannabidiol oil.

Melissa Fletcher Stoeltje STAFF WRITER SAN ANTONIO EXPRESS NEWS

Parents of children whose epileptic seizures aren’t controlled by existing drugs testified before a state House committee Tuesday, all but begging lawmakers to pass a bill that would legalize an oil derived from marijuana.

Cannabidiol oil — or CBD oil — is already legal in more than a dozen states and contains very little THC, the psychoactive component that makes marijuana users high.

Some parents in states where the orally delivered substance is legal have deemed it a miracle drug, saying it greatly reduced or even stopped their child’s convulsions, while other medications didn’t.

A handful of Texas parents came before legislators, pleading — sometimes tearfully — to have the same option for their children.

Jeff Davis of Fort Worth said his 3-year-old daughter’s epilepsy causes her to have up to 100 seizures a day, with harmful effects to her brain. Sometimes, she must be given heavily sedating “rescue” drugs that twice have caused her to stop breathing, requiring a ventilator.

“Words can’t describe what it’s like to see your child suffer every day,” he said. “And then to add insult to injury, knowing there’s something like CBD oil that could help control her seizures, but we can’t try it because we live in Texas.”

A handful of opponents took to the microphone as well, including Sheriff William Travis of Denton County, who said it was “irresponsible” to advocate using marijuana on “a child’s developing brain.”

When Rep. Elliott Naishtat, D-Austin, asked Travis if he had issues with CBD oil from a law enforcement perspective, vs. a medical perspective, the sheriff said he did.

“My concern is other children in the household getting ahold of this product and using it extensively when the parents aren’t around,” he said, drawing laughter from most of those assembled, given that CBD oil lacks intoxicating properties.

The bill, co-authored by Rep. Stephanie Klick, R-Fort Worth, as well as a companion bill in the Senate, would allow for the implementation of “compassionate use” of CBD oil by 2017. That timeline would essentially skirt Food and Drug Administration trials, which can take as long as a decade to study and approve a drug.

Nearly 150,000 Texans live with intractable epilepsy, many of them children. CBD oil is thought to work by calming excess electrical and chemical signals in the brain.

The bill would legalize the drug only for epileptic patients for whom standard treatments have failed.

“These families have no other options,” Klick told her colleagues Tuesday. “They’ve exhausted the FDA-approved drugs that are available to them.”

Dr. M. Scott Perry, a pediatric epileptologist at Cook Children’s Hospital in Fort Worth, testified in favor of the bill, noting that studies show that CBD oil reduced seizures in mice.

While rigorous scientific studies on the substance are underway at several sites in the United States, Perry told lawmakers that “the human data on CBD oil is very encouraging.”

 He cited an abundance of anecdotal evidence from parents, as well as findings of a “compassionate use” study of137 patients with intractable epilepsy. The data showed a 54 percent reduction in seizures among patients; 9 percent became seizure-free.

“I believe this drug holds great promise,” he said. “As doctors, our goal is to cure and treat and to weigh the costs and benefits of a medication. Drug trials take a great deal of time, and many of my patients don’t have that kind of time.”

Preliminary studies show the main side effect of CBD is sleepiness, he said. Standard drugs carry many serious, sometimes life-threatening side effects, such as liver damage, respiratory suppression and pneumonia.

But at the federal level, marijuana is classified as a Schedule I drug, meaning it is dangerous and has no medicinal value. That ranking has hampered scientific research.

Dr. Angus Wilfong, a pediatric neurologist and epileptologist at Texas Children’s Hospital in Houston, testified against the bill, stating more and better research must be done before CBD oil becomes legal.

“I’ve treated children and families with intractable epilepsy all my life, and it breaks my heart to listen to these stories,” he said. “But we need to use science and not emotion when dealing with these life-threatening medical conditions.”

Wilfong argued that any decision to legalize CBD oil must wait until the results of ongoing random, double-blind, placebo-controlled studies, “which should be done in six months or less.”

Representatives from the Texas Medical Association also testified that more research was needed. Other parents told lawmakers that the bill needs to be revised because it doesn’t allow for higher levels of THC needed to control their children’s seizures.