Pubdate: Mon, 14 Mar 2016
Source: Day, The (New London,CT)
Copyright: 2016 The Day Publishing Co.
Contact:  http://www.theday.com/
Details: http://www.mapinc.org/media/293
Author: Judy Benson

BILL ON MEDICAL MARIJUANA FOR KIDS GAINING SUPPORT

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.
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MAP posted-by: Jay Bergstrom