Wilton resident Dana Haddox-Wright was “very excited” when she learned House Bill 5450, which would allow children with uncontrolled seizures to access to medical cannabis, had made progress last week.

The Public Health Committee, a joint standing committee of the Connecticut General Assembly, voted 20-7 to move the bill on to the House and Senate for vote.

“It’s the first step in the process,” said Haddox-Wright, whose six-year-old daughter, Ella, suffers from Dravet syndrome, a rare genetic epileptic brain dysfunction that causes her to have uncontrolled seizures.

Ella is on three medications and two supplements, totaling 15 pills each day, the side effects of which include — but are not limited to — permanent brain damage, aggressive behavior, increased or decreased appetite, cognitive impairment and loss of liver, kidney, and pancreatic functions.

Haddox-Wright said Ella is also on the ketogenic diet, a strict medical diet that requires her and her husband to carefully measure all of her meals on a gram scale. Side effects of this diet include slow growth, kidney stones, loss of liver and kidney function and acidity of the blood.

Despite all the medications and supplements, Haddox-Wright said, Ella has seizures at least once a month and “currently has the choice between suffering through multiple uncontrollable seizures or ingesting toxic chemicals that do not control her seizures completely.”

“The current approved pharmaceuticals are not sufficient at treating my daughter’s disease,” said Haddox-Wright. “My daughter deserves access to another option; a natural treatment that has no proven negative side effects.”

Opposition


Forty-two people testified at the Public Health Committee’s March 2 public hearing on Bill 5450, including Haddox-Wright, who urged members of the committee to consider passing the bill. Sen. Toni Boucher (R-26) also testified and expressed strong opposition.

Boucher said medical marijuana would “expose children, whose bodies are still developing, to a substance which has been linked to numerous health complications,” and “the rush to expand the medical marijuana program shows a misplaced confidence in an unproven drug, which may have serious long-term consequences.”

“This bill has the same disadvantages as Connecticut’s previous efforts in advancing medical marijuana with respect to federal law, under which cannabis remains an illegal, Schedule 1 controlled substance,” said Boucher.

“The lack of scientific data on the subject means that these parents have no access to the kind of information that would allow them to make an informed decision on what treatment is best for their child.”

Haddox-Wright pointed out that the reason there hasn’t been any research on marijuana in Connecticut is because of its classification.

“Because it’s illegal — a Schedule 1 drug, under the same category as heroin and cocaine — they cannot do any research on it. If it’s made legal, then they could have the freedom to do the research and tests,” said Haddox-Wright.

“They’ve done studies in New York where they found ... it reduced seizures by at least 50%, which is huge especially when a child is seizing multiple time a day.”

Haddox-Wright said she believes the biggest misconception about medical marijuana is that “kids are going to be smoking it or in the position to possibly sell it in schools.”

“It would only be available to kids in pill or oil form. There’s absolutely no chance of it being inhaled or smoked in any way,” she said.

“I’m aware of how [Boucher] feels about any bill regarding medical marijuana for children. It just makes me frustrated that she can’t see the benefits it can bring families in Connecticut.”

Haddox-Wright said she doesn’t believe Boucher is listening to her constituents.

“As an elected official, you’re supposed to take what your constituents think and feel about a topic into consideration,” said Haddox-Wright, who has had conversations with people in the area about medical marijuana use in pill or oil form and said “not a single person” has expressed opposition.

“That’s why I’m so surprised that we have elected officials who are opposed to it,” she said. “They either don’t raise the bill and vote with their parties, or they have these notions that they just can’t change their minds.”

Even though “there’s always going to be opposition to it,” Haddox-Wright said, she believes support for medical marijuana is increasing.

“I don’t think it’s something that’s just going to go away,” she said. “The more people learn about it, the more it’s going to continue gaining support.”

Advocacy


Haddox-Wright and two mothers whose children also have Dravet syndrome — Ashley Veronica of Trumbull, and Cara Johnson-Tarricone of North Windham — set up a Facebook page called Medical Cannabis 4 Kids In CT which is followed by more than 1,500 Facebook users.

“We give updates on bills that have been passed in other states, along with how our kids are doing, and information about other kids who have had success on medical marijuana,” said Haddox-Wright.

The trio also works to provide useful tools to help pass legislation in Connecticut for pediatric use of medical marijuana and reaches out to parents in other states whose children have benefited from its use.

“Anybody with questions or hesitations about having medical marijuana for kids should talk to somebody who is trying to fight for their child to get this passed, because it’s not like we would be putting in all this effort if it wasn’t worth a try,” said Haddox-Wright. “We are desperate to make our children’s lives better.”

Next steps


Following the General Assembly vote, the bill was sent to the Legislative Commissioners’ Office to be checked for constitutionality and consistency and will later be assigned a calendar number.

Haddox-Wright said she believes the the bill “has a far better chance of passing, especially since it received more support this year from bigger groups like the Public Health Committee and the Academy of Pediatrics,” and she hopes it does “without any glitches.”

A “yes” vote in the House or Senate would send the bill to the other house for vote. If passed, the bill would become a law and go into effect Oct. 1.

Click here to read Bill 5450.


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