Linda Lloyd doesn’t want to leave her home in Pawcatuck, where her 6-year-old son, Henry, attends “the best school … he could possibly attend” and has a support network of family and friends close by.

“Please don’t force me to move out of state and leave my home in order to give my son a fighting chance,” Lloyd told the state legislature’s Public Health Committee during a hearing earlier this month.

Lloyd, testifying for the first time at the General Assembly, was among eight parents and more than 20 others supporting legalization of medical marijuana for their children and others with debilitating seizure disorders and other conditions that have not responded to traditional pharmaceuticals. 

A similar bill that would expand the state’s medical marijuana program to minors was introduced last year but did not advance beyond the committee. This year, the chances for its success appear stronger.

“It has good prospects,” said state Sen. Terry Gerratana, D-New Britain, co-chairwoman of the committee and a supporter of the bill.

She expects the Public Health Committee will vote this week to send the bill on to other committees for review, and hopes it will continue to advance to a vote in the full General Assembly. Language in the bill was crafted with input from the state Department of Consumer Protection, which regulates medical marijuana for adults since it was legalized in 2012, and now has the support of that agency as well as the Department of Public Health and the Connecticut Chapter of the American Academy of Pediatrics, which did not support it last year.

That’s good news for Lloyd, who said her son suffers frequent and life-threatening seizures due to catastrophic temporal lobe epilepsy that are not being controlled by the 21 medications he takes daily, some of which have harmful side effects.

“Without other treatments available,” she said, “it would seem Henry’s last option is invasive brain surgery. Removing almost half his brain, as well as dividing the two hemispheres, would only be palliative in his case, and not curative.”

State law, she said, prevents Henry from taking medical marijuana that has helped other children with similar conditions, and with fewer side effects than the strong medications he now takes.

“How can Henry and children like him not be afforded the opportunity to at least try this treatment, to possibly stop or reduce their seizures?” she asked.

In a phone interview this week, Lloyd said those opposed to legalizing medical marijuana for children often point to a lack of research on its effectiveness. While she is in favor of research, she said, waiting until that happens could be a matter of life and death for children like Henry.

“It can’t be denied that people are getting benefit from it,” she said. “Some kids don’t have time to wait for the research.”

One of those testifying at the hearing about the benefits of medical marijuana for children was Susan Meehan, a former resident of Montville. Now living in Maine, she moved to that state two years ago so that she could legally give marijuana oil treatments to her 13-year-old daughter Cyndimae, who suffers from seizures due to Dravet syndrome. The family’s Montville home is in foreclosure.

“She was going to die,” she said, referring to the dangerous and frequent seizures her daughter had been suffering. Now, she said, with regular doses of a special formulation of a specific marijuana strain, her seizures have lessened in severity and frequency.

“Now she’s going to school,” Meehan said.

Though she and her family are “medical refugees” who are unlikely to return to Connecticut, Meehan said she traveled back to her home state to testify at the hearing last week to help other families.

“I’m really sick of seeing kids die,” she said. “I really hope this gets through to the floor of the General Assembly this time.”

Critics of the bill remain

State Rep. Kevin Ryan, D-Montville, sponsored last year’s bill after hearing Meehan’s story, and also supports this year’s version. Now that medical marijuana for adults has been legal with relatively few problems for a few years, he said, more people are willing to consider that it may also be beneficial for minors.

“The time has given people the chance to get better educated about it,” he said. “There’s more of a comfort level.”

Gerratana, the committee co-chairwoman, said this year’s bill is stronger than its predecessor in several ways. It specifically allows only non-smokable marijuana medications for minors, and specifies the conditions it can be prescribed for. These include uncontrolled seizure disorders, severe spinal cord injuries and terminal illnesses requiring end-of-life care, among others. It also puts a pediatrician on the Board of Physicians that works with the consumer protection department to review the addition of new conditions that would qualify for use of medical marijuana, and establishes a framework for research to take place.

Critics of the bill remain, however.

One is state Sen. Toni Boucher, R-Wilton, who also testified at the hearing. Two others also spoke in opposition.

“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,” she testified. “Indeed, the rush to expand the medical marijuana program shows a misplaced confidence in an unproven drug which may have serious long-term consequences.”

She pointed out that marijuana remains an illegal drug under federal law, and said she fears legalizing medical marijuana for children would expose their developing bodies to “a substance which has been linked to numerous health complications even in adults.”

“Even more worrying,” she added, “the fixation on medical marijuana may have caused parents to eschew better known and more thoroughly vetted treatments for epilepsy.”

While recognizing some of those concerns, the state pediatricians group said the needs of suffering children cannot be ignored. Dr. William Zempsky, head of the Division of Pain and Palliative Medicine at the Connecticut Children's Medical Center and professor of pediatrics at the University of Connecticut Medical School, also testified in favor.

“We … recognize the potential for use in cases of children with terminal illness or debilitating conditions such as intractable seizure disorders that do not respond to traditional treatment modalities,” Dr. Sandi Carbonari, pediatrician and immediate past president of the state pediatricians’ group, said in her testimony. “In these situations the benefit of potential relief of pain and suffering outweighs concerns about future brain development.”

She added that the national pediatricians group strongly supports research and development of pharmaceutical cannabinoids — drugs derived from marijuana — and supports a review of policies promoting research on the medical use of these compounds.

j.benson@theday.com