Bill would allow Wilton girl, others, to use medical marijuana

Just about every four months, Wiltonian Ella Wright has a life-threatening seizure. Sometimes she seizes for such a long period of time her body begins to suffer from total organ failure.
The seizures spread like wildfire in her brain, her mother, Dana Haddox-Wright, said. The longer they are allowed to continue, the worse they become, and while most children have a “five-minute window” for medical intervention, Haddox-Wright knows her daughter more quickly succumbs than others.
It might not prevent seizures in such an acute situation, but there is a medicine in the United States that may reduce these seizures in children by up to 50%. But Haddox-Wright and many other supporters have had to fight an uphill battle to make it legal.
Low-THC marijuana, a non-addictive drug with very low concentrations of psycho-active substances, has reportedly helped children battling seizure disorder across the country, but is still illegal for use by children in Connecticut.
Connecticut House Bill 5892, “An Act Concerning the Palliative Use of Marijuana for Children,” seeks to change that. It would allow children like Ella access to medical marijuana.
Haddox-Wright gave testimony in support of the bill, which was sponsored by state Rep. Kevin Ryan (D-139).
“There’s a lot of misinformation about marijuana out there,” Haddox-Wright said during an interview last week. “And the word marijuana itself carries a negative connotation. But there is not a single documented case of someone dying from marijuana overdose.
“If someone stole a lot of medical marijuana plants [used to treat childhood seizures], it would take a lot to get high. The specific type of cannabis we’re looking for, for Ella, there is as much as 0.3% of THC, which is a very small amount. It would be a waste to use it to try and get high.”

Medical marijuana currently for sale in Connecticut has THC levels from 6% to 27%, according to information from D&B Wellness, a dispensary in Bethel.
The kind of marijuana Haddox-Wright and the Connecticut Association of Prevention Practitioners (CAPP) support for children is a pure CBD oil.
“CBDs are a non-psychoactive cannabinoid found in marijuana, and some case studies have shown CBDs may be an effective treatment for seizure disorders,” John Daviau of the CAPP said in written testimony.
Ella is a 5-year-old girl with a big smile who quickly warms to strangers. Her seizures are the result of a rare genetic disorder known as Dravet syndrome. As much as she loves to go outside, Ella can play for only 15 minutes at a time before she risks falling into a seizure.
Marijuana, especially the low-THC variety, is not a narcotic like the benzodiazaprines Ella already takes, and it carries very little chance for addiction.
In addition, there is growing research into its effectiveness in treating seizures, including a recent report from the American Academy of Neurology (AAN).
For 137 people who completed a 12-week study by AAN on the effectiveness of medical marijuana, patients experienced 54% fewer seizures while taking the drug and only 12 people stopped taking the drug due to negative side effects.


But not everyone is in favor of delivering marijuana as medicine to children.
“I am absolutely not in favor” of Connecticut House Bill 5892, Wilton’s state senator, Toni Boucher (R-26), said.
“The brain is still developing when a child is young,” Boucher said in a recent press release. “Studies show these substances can alter adolescent development and can permanently damage the health and cognitive function of a child’s brain.”
The American Academy of Pediatrics (AAP) Connecticut chapter agrees with Boucher.
A representative of the organization, Dr. Sheryl Ryan of the Yale School of Medicine, said in a recent op-ed piece in The Connecticut Mirror that “given the negative effects of marijuana on brain development, and cognitive performance and mental health disorders, we should not be recommending and supporting such laws.”
Boucher said by phone Monday that when her nephew was suffering from leukemia — a cancer that would qualify a patient under the proposed bill — he was being “bombarded with chemo,” but “all of his issues” were taken care of without the use of marijuana.
“Children can lose memory and have a total change in their brain development,” Boucher said. “There is very conclusive medical science around this.”
The AAP also sees medical marijuana for children as helping expand the use of recreational marijuana among children.
It calls medical marijuana a precedent “that is expected to have repercussions in terms of overall increased access and greater recreational use by our youth.”
Nevertheless, it has recommended taking marijuana off the federal Schedule 1 list of narcotics so it may be studied more easily.

Last resort

Ella’s mother sees things differently.
“She’s been on five different combinations of different medications” during her life, Haddox-Wright said, including narcotics.
“We’ve been told with her diet and with the different medications she’s on, she shouldn’t have seizures at all. But if we’re outside playing for 15 or 20 minutes, we could end up in the hospital with a seizure that’s not stopping.
“It’s not the first form of treatment. It’s the last resort,” she said.
Marijuana is not the only drug to cause developmental problems in children, though the others are completely legal. These include the “benzos” Ella already takes, which are considered the most addictive prescription drugs currently in use.
“It can take months to wean off one medication because of the addictive side effects benzodiazaprines carry,” Ella’s mother said.
In January, HB 5892 was referred to the Joint Committee on Public Health.