Parents Tell Legislature: Allow Children To Use Medical Marijuana

March 17, 2015

Article as it appeared in the Hartford Courant

HARTFORD — Holden Rupert was a thriving grade-schooler despite having a rare form of epilepsy known as Dravet syndrome. He rode a skateboard, performed on stage and had so many friends in his public school that he was known as the mayor.

But at age 11, Holden suffered a sharp setback. His seizures became uncontrollable, and the drugs he was prescribed often made things worse: After taking one prescription medication, his mother recalled, he beat his own face so severely that he wound up in the hospital.

The only thing that helped Holden was a pasty mixture of marijuana and oil that his mother fed him. Holden lives in Massachusetts and was able to get medical marijuana as part of a research study at age 17.

But the law in Connecticut, where his medical team is located, does not allow children under 18 to obtain the drug.

“Medical marijuana has given my son a second chance at life,” Andrea Rupert told lawmakers Friday. Holden, now 18, sat next to her as she addressed the legislature’s judiciary committee. He wore a red helmet to protect his head during seizures; his seizure alert dog, Robi, was perched at his feet.

Allowing children to participate in the state’s medical marijuana program is one of the changes the legislature is considering this year. Senate Bill 1064 would also:

•Allow the state Department of Consumer Protection, which oversees the program, to approve marijuana research programs and to provide immunity from prosecution to those conducting the research

•Extend immunity, both criminal and civil, to nurses who administer medical marijuana

•Make it easier for patients in hospice or another in-patient care facility to obtain medical marijuana by allowing the product to be delivered there directly from a dispensary

•Simplify the laboratory testing process that dispensaries are required to undertake to ensure that their product is not contaminated

The changes were proposed by the Department of Consumer Protection.

“As the program has begun to mature, the department has carefully considered where we are today, and if there are any statutory changes that could improve our ability to administer the program and better serve the patient community. We have concluded that there are,” Deputy Commissioner Michelle Seagull said in written testimony provided to the judiciary committee.

“The changes we are seeking to the current medical marijuana statute are, in large part, a reflection of how successful the original statute was in creating a vision and framework for a marijuana program that is truly medical.”

Approved by the legislature in 2012, Connecticut’s tightly regulated medical marijuana program has served as a model for other states, Seagull said. The number of physicians who have registered for the program has increased from 83 in May 2014 to 187 currently, and the number of registered patients has more than doubled to 3,027 during that same span.

However, Connecticut is one of the few states that does not permit seriously ill children to access the drug.

While advocates claim marijuana is an effective treatment for a host of ailments and afflictions, some studies suggest it is particularly effective at treating children with severe epilepsy. A young girl from Colorado, Charlotte Figi, made national headlines two years ago when she began taking a cannabis product low in THC and the number of severe seizures she experienced went from hundreds per week to just a handful.

For Andrea Rupert, the only proof she needs is the fact her son was able to sit quietly next to her for her entire 23-minute testimony before the judiciary committee. “We could not have done this a year ago,” she said. “It’s because of the medical marijuana he can even sit here and be with me.”

The committee also heard from the mother and sisters of Cyndimae Meehan, whose family described her as a “medical marijuana refugee.” Cyndimae, who is 12 and also has Dravet syndrome, moved to Maine with her mother so she could participate in that state’s medical marijuana program, leaving her dad and sisters behind in Connecticut.

“She is thriving using medical marijuana to control nearly all of her seizures,” her mother, Susan Wendy Meehan, told the panel. Before she began taking marijuana oil, Cyndimae used a wheelchair, rarely spoke and frequently had seizures lasting hours before she began using marijuana oil. In the past year, since she began using the oil, she has only experienced one generalized seizure lasting longer than 90 seconds, her mother said.

But the treatment has come at the price of splitting up the family, Meehan added. “We desperately miss our family and the support systems of our Connecticut home,” she said.

Advocates say there are safeguards for children built into the legislation. They note that the proposal would require two doctors to sign off on a pediatric patient’s use of medical marijuana, not just one. It would also require a parent’s approval.

But some lawmakers expressed concerns about allowing children access to marijuana, even with those restrictions. Sen. Toni Boucher, a Republican from Wilton who has long been wary of medical marijuana, noted that the federal government considers marijuana “one of the more dangerous drugs.”

“We know that you’ve been through a lot and have had to explore some very dangerous drugs for what is a very serious condition,” Boucher told Rupert.

Still, others acknowledged the lengths to which parents will go to alleviate their children’s suffering.

“Good people can come to different conclusions when it comes to this issue, but I’ve always said if it was my kid, I wouldn’t care,” Sen. John Kissel, R-Enfield, said. “I’m going to do something, and if I have to go and find something on the street and bake it into a brownie in my own house, I’m going to do it.”

Speaking directly to Rupert and her son, Kissel said: “I’m supportive of this. It’s controversial. It’s difficult. Even the original concept of medical marijuana, some people just fundamentally disagree with it and don’t feel that it’s appropriate. But I look at you and a picture’s worth a thousand words.”

The committee is expected to vote on the bill later.