By a 129-13 vote, the Connecticut House of Representatives passed an amendment to House Bill 5450 on Wednesday, April 20, that would allow children with uncontrolled seizures and other severe neurological conditions to have access to medical marijuana.

State Representatives Gail Lavielle (R-143) and Tom O'Dea (R-125) both voted in favor of the amendment.

“I have given this bill very long and hard thought — harder and longer than I might have normally — not because the subject matter has touched me personally, because it hasn’t, but I do know people for whom this subject has a very deep resonance. It’s a daily and hourly concern for them every day, every night, every waking hour,” Lavielle said during the April 20 session.

“The material in this bill is very important to them and I therefore felt I owed them all of my attention in thinking about it, and I'm going to support this bill not because of what I think I know, but because of what I believe is the honest way to answer the question of who should be making the life or death decisions that are related to the matters in this bill,” she continued.

Lavielle said while she is “very deeply concerned” about drug-related problems affecting communities and while she “voted against the marijuana and decriminalization bill and … the medical marijuana bill,” she would not vote against this one.

“It’s not because I’ve suddenly decided that marijuana’s OK — I haven’t — but I also think I don’t know enough about it to make a really considered judgment about its effects and characteristics,” she said.

“I’ve been fortunate to have received a great education, but I wasn’t trained as a research scientist and I certainly am not qualified as a medical doctor. Because of that, I don’t feel qualified to make a pronouncement to either the risks or the benefits of marijuana.”

However, Lavielle said, there are some things she does know.

“I know that parents of children with severe epilepsy or any type of serious seizure or neurological disorder are willing to try anything that might work — anything that might calm their children’s pain, relieve their distress or decrease the frequency of their troubles,” she said.

“I know these parents worry every day, every hour that their children will suffer another episode and that it will be different than anything they’ve experienced before. I know many of them give their children medications that cause grave side effects and that may pose long-term dangers, and I know they’re not interested in putting their children in danger," she said. "On the contrary, they want to save them from pain and suffering.”

Lavielle said she knows these parents “consider marijuana as something that might help their children” and they are aware that there are risks.

“When nothing else works, they are often willing to try something that might. They will do anything if it has a chance, and they’re serious enough to assume the responsibility that that decision entails,” she said.

“I am not these parents, these are not my children, and they are not my patients — and I have to ask myself, ‘Who am I to tell them what to do?’”

To claim to know what’s best for these children, Lavielle said, would be “supreme and egregious arrogance.”

“Will it hurt them? Will it help them? I really don’t know, and I could study the subject for a very long time and I still [wouldn’t] know,” she said.

“As of now, there is so much we don’t know, but when someone very dear to you is facing great suffering and terrible uncertainty every day, you’re willing to try anything that may help, and if there is an alternative that may give you hope, then that is a choice that should be yours.”

Lavielle said she supports House Bill 5450, not because she’s “arrogant enough to think [she has] special knowledge that would help these children and their families” or “presumptuous enough to claim assurance that it will hurt them,” but because she believes the decision should be the parents’ — “after consultation with their doctors” — and “theirs alone.”

For Wiltonian Dana Haddox-Wright, the bill’s progress is part of a multi-year struggle to gain some relief for her 6-year-old daughter, Ella, who suffers from a rare genetic epileptic brain dysfunction called Dravet syndrome that causes her to have uncontrolled seizures.

The “first step in the process,” said Haddox-Wright, was when the Public Health Committee, a joint standing committee of the Connecticut General Assembly, voted in March to move the bill on to the House and Senate for a vote.

When this happened, Haddox-Wright told The Bulletin she was “very excited” for her daughter, who currently takes 15 pills each day and is on the ketogenic diet, a strict medical diet that requires her parents to carefully measure all of her meals on a gram scale.

Some possible side effects of Ella’s medications include permanent brain damage, cognitive impairment and loss of liver, and side effects of her 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 told The Bulletin in March, 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.”

Support and opposition


During the Public Health Committee’s March 2 public hearing on the bill, Sen. Toni Boucher (R-26) expressed strong opposition.

“I'm aware of how [Boucher] feels about any bill regarding medical marijuana for children,” Haddox-Wright told The Bulletin last month. “It just makes me frustrated that she can’t see the benefits it can bring families in Connecticut.”

Haddox-Wright said she 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.

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

“The more people learn about it, the more it’s going to continue gaining support,” she said.

According to a Wilton Bulletin poll, taken by 45 people as of April 22, 96% of respondents said they support the use of medical cannabis to treat children with uncontrolled seizures. Two percent said they are against it, and another 2% said they are unsure.

The bill will now be sent to the Senate for vote. If passed, the bill would become a law and go into effect Oct. 1. Haddox-Wright said she hopes it does so “without any glitches.”

Click here to read Substitute House Bill No. 5450.


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