Pubdate: Fri, 10 Jan 2014
Source: Sun-Sentinel (Fort Lauderdale, FL)
Copyright: 2014 Sun-Sentinel Company
Contact: http://drugsense.org/url/mVLAxQfA
Website: http://www.sun-sentinel.com/
Details: http://www.mapinc.org/media/159
Author: Susannah Bryan

PARENTS LOBBY LAWMAKERS TO LEGALIZE STRAIN OF POT

Charlotte's Web is a strain of marijuana available only in Colorado 
that's been shown to halt seizures in children with intractable 
epilepsy not controlled by traditional medication.

A movement to legalize a strain of marijuana shown to stop seizures 
in children gained steam on Thursday, with Florida lawmakers vowing 
to move forward with a bill after hearing tearful testimony from 
parents around the state.

"We want to be on the right side of history and medicine," said Rep. 
Katie Edwards, D-Plantation, after a hearing in Tallahassee held by 
the House Subcommittee on Criminal Justice. "The work begins today to 
take into account the pleas of people all around the state to do 
something and do it quickly, to make sure these individuals can gain 
access to the safest treatment without playing politics or hiding 
behind antiquated arguments."

Each parent came with the same message: Help us, before it's too late.

Seth Hyman, a Weston father whose 8-year-old daughter suffers from 
several seizures a day, joined other parents in urging state 
lawmakers to grant access to Charlotte's Web, a strain of marijuana 
available only in Colorado that's been shown to halt seizures in 
children with intractable epilepsy not controlled by traditional medication.

Charlotte's Web is not smoked, but an oil applied on food or 
administered through a feeding tube. It is high in cannabidiol (CBD) 
but low in tetrahydrocannabinol (THC), the compound that gets users high.

"We need solutions quickly," said Hyman, his wife cradling his 
daughter behind him."We don't have time. Rebecca could have a seizure 
today back in her hotel and die. I'm urging legislators to pass a 
bill quickly, because we don't have time."

Rep. Matt Gaetz, R-Fort Walton Beach and chair of the committee, 
heard the plea, promising to bring a bill that would be voted on by 
the committee in February. If it passes, it would go before the 
entire House in March or April.

If signed into law, Floridians would be able to gain access to CBD 
oil as soon as July or October, Edwards said.

"I'm sure we could find someone to file an identical bill in the 
Senate," Edwards said. "There's no good reason why the governor 
should not meet with these families and learn about the science and 
join this effort. The burden would be on anyone to now say why they 
would oppose it."

Miami's Jacel Delgadillo, whose toddler son Bruno has Dravet 
syndrome, begged legislators to do something to help her child.

"My son's first seizure was at 3 months," she said, her son asleep in 
her arms. "His seizures are not controlled by medication. You never 
know when they're going to go into a [fatal] seizure and you have to 
say your good byes."

Charlotte's Web is her only hope, she said. If it's not legalized in 
Florida, she plans to move to Colorado.

Bruno is already on the waiting list for Charlotte's Web, she told 
the Sun Sentinel.

"Even if he never walks or talks, at least I want him to be 
seizure-free so he can play with his toys," she said. "He can't even 
sit and play with his toys. The seizures won't let him."

Paige Figi, the mother of the child for whom Charlotte's Web was 
named, also testified. Her daughter Charlotte had her first seizure 
at 3 months. It lasted four hours. Doctors later diagnosed her with 
Dravet syndrome. Racked by seizures, she was unable to eat, walk or talk.

Now, after nearly two years on Charlotte's Web, she can talk, eat on 
her own and even ride a bike. Her story was featured in a CNN special 
by Dr. Sanjay Gupta last year.

"We are just asking for leniency to treat these children," Figi said. 
"Doctors are telling their patients to move to Colorado. We don't 
have time to wait 10 years for a pill to go to market."

Joel Stanley, one of six brothers who run the nonprofit Realm of 
Caring Foundation in Colorado that dispenses Charlotte's Web, told 
legislators that FDA approval is likely years away.

"This could take many, many years," Stanley said. "And these families 
don't have that."

Just last month, he said, four children on the Charlotte's Web 
waiting list died.

"We have so many people moving across the country and world to access 
this [in Colorado]. It may very well be the last option for these families."
- ---
MAP posted-by: Jay Bergstrom