Courtesy of the Tarricone family
West
Ann Tarricone of North Windham, who has hundreds of seizures per day,
being hooked up to an electroencephalogram, which measures electrical
activity in the brain.
The Connecticut Chapter of the American Academy of Pediatrics fought to stop a similar measure last year, but plans to advocate for this year’s scaled-back proposal, which would allow access to nonsmokable forms of marijuana to minors with one of six conditions, including severe epilepsy and terminal illnesses that require end-of-life care.
The bill, which was developed by the state Department of Consumer Protection after discussions with the pediatricians’ group, faces opposition from those who say more research is needed before children have access to the drug.
Jillian G. Wood, the chapter’s executive director, said many general pediatricians had concerns about the concept, as did psychiatrists who treat young people with psychosis related to drug use. The concerns include the drug’s potential to negatively affect brain development and a lack of evidence about the appropriate dosages for children.
But Wood said the group’s leaders were swayed after hearing from pediatric neurologists and parents of children with severe seizure disorders, for whom changing the law could be the last hope of having a child who is not in pain or seizing frequently – or moving to a state where marijuana use is legal for their conditions. Connecticut is one of 23 states – in addition to Washington, D.C., and Guam – that allow for "comprehensive" medical marijuana programs, but the only one of those that does not allow access for minors, according to the National Conference of State Legislatures.
Although the national organization, the American Academy of Pediatrics, opposes marijuana use for minors, the Connecticut chapter based its position on the view that palliative use could be acceptable in cases of children with debilitating or terminal conditions. For children receiving end-of-life care, for example, the potential for pain relief would outweigh concerns about future brain development, said Dr. Sandra Carbonari, a Waterbury pediatrician and the chapter’s immediate past president.
“We do understand that these are situations where, unfortunately…brain development in these kids is not something we have to be concerned about because their condition is terminal,” she said. “In that sense, then, the positive would outweigh the negative.”
Similarly, Carbonari said, for children having hundreds of seizures per day, the seizures themselves can impact all forms of development, including the brain’s.
In addition to children with severe epilepsy or a terminal illness that requires end-of-life care, this year's proposal would allow access to marijuana to minors with cerebral palsy, cystic fibrosis, uncontrolled intractible seizure disorders, or irreversible spinal cord injury with objective neurological indication of intractable spasticity. (The list does not include some conditions that make adults eligible, including post-traumatic stress disorder.)
Minors would need permission from a parent, their primary care provider and a physician who specializes in the patient’s condition.
The forms of marijuana they receive would be restricted to those that are not smoked, vaporized or inhaled.
The bill leaves open the possibility of expanding the program to minors with other conditions in the future, but would require the board of physicians that makes those decisions to take into account the effects of palliative use of marijuana on brain development in those patients.
Opponents: More research needed
Sen. Toni BoucherSen. Toni Boucher, R-Wilton, a staunch opponent of relaxing laws related to marijuana, raised concerns about the drug’s hallucinogenic, brain-altering and damaging components. She noted that there’s a separate proposal to raise the smoking age, and said if lawmakers want to further restrict tobacco, similar age limits should apply to medical marijuana.
Boucher also cited pediatricians in explaining her opposition, noting that the American Academy of Pediatrics and the American Epilepsy Society oppose the use of medical marijuana. (While the American Academy of Pediatrics opposes medical marijuana outside the regulatory process of the U.S. Food and Drug Administration, the organization said in a 2015 policy statement that marijuana could be an option “for children with life-limiting or severely debilitating conditions and for whom current therapies are inadequate.”)
John Daviau, executive director of the Connecticut Association of Prevention Professionals, also cited the need for more research and information on what components work, what don’t, who they’re effective in, the appropriate doses and potential negative effects.
“It seems that using experimental treatments makes a lot more sense to me personally when we’re talking about end-of-life care,” he said. “When we’re talking about the severe epilepsy, it’s really hard for us to support any legislation that proclaims something medicinal for kids without the clinical research to back it up.”
“When we’re talking about kids who could end up with severe side effects for the rest of their life, for example, that’s something to be a lot more cautious about,” he added.
Interest in and research on the medical use of compounds found in marijuana has grown in recent years, fueled in part by reports of children with severe epilepsy experiencing dramatic reductions in seizures after using products derived from the cannabis plant.
But research akin to that on other pharmaceutical products lags, largely the result of federal restrictions on the drug. That can make it difficult to analyze outcomes, experts say, because the products and doses children in other states use can vary widely.
Consumer Protection Commissioner Jonathan Harris said concerns about research are understandable, but said the bill would set the stage for more research. And he noted that Connecticut’s medical marijuana program is more highly regulated than those in many other states. Among other things, Connecticut requires that the marijuana be lab tested and labeled with a list of active ingredients.
While there haven't been many double-blind studies, Harris said he's read several "pretty technical studies."
"There’s research now going on here in Connecticut between some of the producers, Yale University, the dispensaries. There’s research from Israel, from Italy," he added.
“We’re in a constant state of crisis”
Courtesy of the Tarricone family
West Ann Tarricone
Cara and Diane Tarricone of North Windham are among those hoping the medical marijuana program will be opened to children. Their 8-year-old daughter, West Ann, has hundreds of seizures per day.
When she’s not seizing, West is a vibrant child, Cara Tarricone said. But the seizures – which began before her first birthday – come often and the treatments can have significant side effects.
West has tried 15 or 16 different medications and treatments, including a specialized diet and steroids. Some worked initially but lost their effectiveness. Some led to behavioral problems, inability to sleep or made her feel like a zombie – and didn’t help the seizures. She recently began having a new type of seizures and stopped speaking. She often uses sign language to communicate, but that has declined too, and she’s stopped singing, her mother said.
There is one legal seizure medication West has not tried. The Tarricones are wary of its side effects: It could attack bone marrow, meaning there’s a risk West could get cancer.
“To play roulette with a medication, that’s scary,” Cara Tarricone said.
West’s parents have two types of rescue medication to give her during seizures, but Tarricone said they can’t use them for every seizure since that would be too many doses and they can lose effectiveness over time.
“The problem is we have to live with so much,” she said.
Cara Tarricone stays awake most of the night in case West has a seizure in her sleep. She naps while West and her twin brother are in school, but with her home and cell phones by her head in case the school nurses call.
“We’re in a constant state of crisis,” she said. “You’re constantly watching for something.”
Tarricone has seen an evolution in attitudes toward medical marijuana. Three years ago, after a friend’s family moved to Colorado so their daughter could legally try it to relieve her seizures, Tarricone asked about it at her daughter’s neurologist’s office.
“They literally laughed in my face,” she said.
Tarricone wasn't offended by the response; she still adores the nurse, but said the issue hadn't been on the woman's radar. She got questions about how the drug could be delivered to a child (there is an oil form).
And Tarricone said the views of the medical providers who treat her daughter have changed as they have learned more. If it were legal, West's neurologist would sign the paperwork allowing her to use medical marijuana, Tarricone said.
The legislature's Public Health Committee is scheduled to hold a hearing on the bill March 2.
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