Pubdate: Mon, 27 Jan 2014
Source: Wall Street Journal (US)
Copyright: 2014 Dow Jones & Company, Inc.
Contact:  http://www.wsj.com/
Details: http://www.mapinc.org/media/487
Author: Arian Campo-Flores

Parents Press For Pot-Based Remedy

Treatment May Help in Ailment That Causes Chronic Seizures in Children

MIAMI- Jacel Delgadillo said she has tried a host of treatments to 
help her 2-year-old son, Bruno, cope with severe seizures triggered 
by a rare form of epilepsy, from a special diet to more than a dozen 
medications. But nothing has worked.

Now she hopes a legislative proposal in Florida will provide a new 
option: a marijuana extract called cannabidiol, or CBD, that 
anecdotal evidence suggests is effective in treating the disorder.

The substance, which doesn't produce a high and can be taken orally 
in an oil form, has been embraced by parents whose children, like 
Bruno, suffer from Dravet syndrome, which occurs in about one of 
every 30,000 births. The condition begins in infancy and can cause 
hundreds of seizures a day, developmental delays and even death.

"I'm praying that it becomes available here," said Ms. Delgadillo, a 
37-year-old single mother of two in Miami. "It's our last option."

Lawmakers here and in a handful of other states are weighing measures 
to effectively legalize marijuana derivatives that are high in CBD 
and low in tetrahydrocannabinol, or THC, the psychoactive compound in 
pot. Among them are Republicans who otherwise strongly oppose 
authorizing the use of marijuana for medicinal purposes.

"I'm a converted zealot," said Rep. Matt Gaetz, the Republican 
chairman of the criminal justice subcommittee in the Florida House. 
He said he originally was against legalizing CBD because he thought 
it could open the way to broader use of medical marijuana. But after 
hearing the accounts of desperate families, he said he changed his mind.

"I will use every tool in the toolbox to ensure the parents of these 
severely ill children are not criminals," Mr. Gaetz said. He and 
others are preparing a bill in advance of the legislative session, 
which begins in March.

Similar efforts are under way elsewhere. Prodded by families, 
lawmakers in Alabama and Nebraska filed bills this month that would 
effectively permit the use of CBD to treat disorders like Dravet 
syndrome. Similar measures are expected to be filed in Georgia and 
Utah, according to legislators in those states.

Twenty states and the District of Columbia have legalized marijuana 
for medicinal use, but the states considering CBD bills, which are 
generally more conservative, aren't among them.

Yet the measures face obstacles. In Florida, a separate initiative to 
get a medical-marijuana amendment on the ballot in November has met 
with stiff opposition from GOP leaders, including Gov. Rick Scott. 
The petition drive has secured the necessary number of voter 
signatures, but the ballot language must still win approval from the 
state Supreme Court.

State Rep. Dennis Baxley, the Republican chairman of the House 
judiciary committee, declined to support a request by Mr. Gaetz to 
include a CBD bill in a package of criminal-justice measures, a move 
that would have boosted its chances.

"It's noble that he wants to figure out how to help these families," 
Mr. Baxley said. But "we need to figure out if this is really safe."

There is no scientific data on the effectiveness and safety of CBD to 
treat seizures, said Elson So, president of the American Epilepsy 
Society. Though anecdotal reports about the oil are encouraging, he 
said, "it would be premature" to authorize it as a treatment. A 
preliminary study on CBD, led by a New York University researcher, 
has just begun, Dr. So said.

Meanwhile, parents of some children with the ailment have moved to 
Colorado, where marijuana is legal and they can obtain an oil derived 
from a high-CBD and low-THC strain of pot dubbed "Charlotte's Web." 
The variety is named after Charlotte Figi, a girl with Dravet 
syndrome who stopped having seizures and became more functional after 
taking the oil.

Roughly 300 kids and adults with a variety of disorders are using 
Charlotte's Web, said Joel Stanley, whose family grows the strain, 
along with others, and owns marijuana dispensaries in the state. 
Demand is so high that there's an in-state waiting list of 300 people 
and an out-of-state list of more than 1,000.

Virtually all the kids suffering from seizures have responded in some 
way to the treatment, which costs an average of $70 a week, Mr. 
Stanley said. Among them are Cristi Bundukamara's 14-year-old son and 
13-year-old daughter, both of whom have a rare neurodegenerative 
disorder. After two months of CBD treatment, she said, her son's 
seizures have decreased by half and her daughter isn't having any.

Stories like that give Ms. Delgadillo hope. She had been planning to 
move to Colorado, but is now waiting to see if the Florida 
legislature acts. Her son Bruno has been on medication since he was 3 
months old and cannot speak or sit up. Because he can have a seizure 
at any moment, she never leaves him alone and sleeps beside him, 
holding his hand.

With CBD, "maybe my son will be able to sit up or take a few steps," 
Ms. Delgadillo said. "If I could just hear 'Momma,' it'll be a miracle."
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MAP posted-by: Jay Bergstrom