Pubdate: Sat, 05 Jan 2013
Source: Bradenton Herald (FL)
Copyright: 2013 Bradenton Herald
Contact: http://www.bradenton.com/submit-letter/
Website: http://www.bradenton.com/
Details: http://www.mapinc.org/media/58
Author: Mary Ellen Klas

FLORIDA PARENTS PUSH TO LEGALIZE POT STRAIN THAT EASES KIDS' SEIZURES

Parents say Florida lawmakers should open the door to a promising 
strain of marijuana that is low in psychoactive properties but high 
in the compounds needed to control seizures in their children.

There isn't a day that goes by that Danielle and Seth Hyman don't 
live in fear that one of the epileptic seizures that course through 
their daughter dozens of times daily could be the one that kills her.

"At any given time, my little angel could be taken to heaven," said 
Seth Hyman of Weston. His 8-year-old daughter Rebecca suffers from a 
rare genetic disorder that results in hearing loss, visual 
impairment, frequent daily seizures and requires her to be fed 
through a feeding tube to supplement her nutrition.

For years, the couple tried powerful medications to control the 
frequent, often silent, seizures but the toxins weakened their 
daughter's organs and produced little improvement. Now, the Hymans 
are among a growing number of Florida families holding out hope that 
they can persuade lawmakers to legalize a strain of marijuana that 
has been shown to control seizures in children.

The strain is high in cannabidiol (CBD), the ingredient that controls 
seizures, but is low in tetrahydrocannabinol (THC), the compound that 
creates a high. It can be administered without smoking -- ingested in 
oil form or vaporized in a feeding tube. But, like all marijuana in 
Florida, it is illegal to possess, distribute and sell -- unless 
lawmakers make an exception.

After years of rejecting proposals to allow marijuana to be sold for 
medical purposes, Florida's Republican-led Legislature has agreed to 
hear a bill to allow medical distribution of the specialty strain, 
known as Charlotte's Web.

The House Criminal Justice Subcommittee will hold a workshop Thursday 
to hear from parents, growers in Colorado, and medical professionals 
about Charlotte's Web.

The political breakthrough was prompted in part by the popularity of 
a proposed constitutional amendment that would legalize 
doctor-authorized cannabis under certain circumstances.

The medical breakthrough came just over a year ago. The parents of a 
Colorado child, Charlotte Figi, persuaded the growers of the strain 
to let them extract the oils of the plant to give to their 
five-year-old daughter as a last-ditch attempt to control her seizures.

Charlotte suffers from Dravet syndrome, a rare and intractable form 
of epilepsy. But after days on the marijuana oil, her symptoms 
subsided. Now the marijuana strain has been named after her and 
growers have formed a foundation to produce and distribute it, giving 
hope to families across the globe.

"I've not seen a single other state that is focused on a cannabinoids 
through the lens of the THC content," said Rep. Matt Gaetz, R-Fort 
Walton Beach, chairman of the House Criminal Justice Subcommittee. "I 
want to know who those people are and who they are helping."

Under the proposal, to be wrapped into a larger sentencing reform 
bill that reduces criminal penalties for possession of some drugs, 
only strains lower in THC would be allowed.

The bill is sponsored by Democrat Katie Edwards of Plantation. Her 
proposal to get a broader bill authorizing marijuana sales for 
limited medical purposes was killed by House and Senate leadership last year.

The goal, she said, is to allow research and development of the 
marijuana strain at one of Florida's state universities and have it 
tightly regulated. She hopes the partisan politics over the 
constitutional amendment doesn't spoil the bill "because I think it's 
wrong to tell a family you can't have access to something you know 
could help your child."

But the hearing is an about-face for the Republican-led legislature, 
which has found itself on the wrong side of public opinion polls 
after refusing for three years to give a hearing to bills to either 
legalize medicinal use of marijuana or put an amendment on the ballot 
to allow for it.

In the last year, a private group funded by Orlando trial lawyer and 
Democrat John Morgan has collected nearly 1 million signatures to put 
a similar amendment on the November ballot.

The group, United For Care, must submit the signatures to supervisors 
of elections across the state for validation on Monday and they must 
have the required 683,149 signatures verified by Feb. 1.

"We are only here because they wouldn't allow a hearing," Morgan said 
last week. "We're feeling very confident."

He supports the proposal to legalize Charlotte's Web, but believes it 
falls short of what the public wants.

"They're basically saying let's take care of everyone with seizures 
and epileptic episodes but let's not take care of the people with 
cancer, AIDs, ALS and multiple sclerosis -- so I think the public 
will see it for what it is," he said.

Several polls show that Floridians -- including a majority of 
Republicans -- support the proposed amendment, which must win 60 
percent of the vote to be adopted into the Constitution.

"I get a sneaking suspicion that a lot of my colleagues would vote 
for it if they were allowed to," said Sen. Jeff Clemens, D-Lake 
Worth, who has sponsored the medical marijuana legislation for the 
last three years. "The polling hasn't changed their opinion so much 
as it has allowed them to voice their opinion."

Clemens said he will file a bill again this year to allow for 
legislative approval of marijuana for medical uses, with a regulatory 
scheme patterned after the most successful efforts in the 20 states 
that now allow marijuana for medical use. Only Colorado and 
Washington state have approved pot for recreational use.

The signature verification effort is not the only hurdle facing 
Morgan and United For Care. The Florida Supreme Court also must 
decide whether the ballot language is adequate or is misleading, as 
Attorney General Pam Bondi and Gov. Rick Scott allege.

Gaetz says the presence of the constitutional amendment had nothing 
to do with his change of heart about medical marijuana.

"I'm not motivated one way or the other by the proposed 
constitutional amendment because I don't think that will be on the 
ballot," he said.

Meanwhile, some parents aren't waiting for the politics to play out.

Plantation residents Katherine and Michael Hsiao are in the process 
of moving to Colorado where they hope to get treatment for their 
seven-year-old son Kael, who suffers from Dravet syndrome.

"Our businesses are here. Our home is here and our family is here but 
our goal is to come back -- when the law is changed," said Katherine 
Hsaio. "We can't wait. What if Kael dies?"

She said the anecdotal evidence shows that children with severe 
epilepsy have seen 50-100 percent seizure reduction as tracked over 
three months when they are treated the the Charlotte's Web strain.

"We don't know if that's just a fluke, but we've got to try it," she said.

The Hsaio's are in a unique situation. Micheal's mother, Dr. Jane 
Hsaio, is co-founder and vice-chairman of a pharmaceutical company 
and has been involved in the formulation and legalization of numerous drugs.

She wants to do clinical trials on the marijuana extract in her lab 
in Miami but she cannot proceed without state or federal approval.

"She has all these resources and we still can't get it," Katherine Hsaio said.

At Miami Children's Hospital, which has one of the leading epilepsy 
programs in the nation, doctors are working with a British drug 
company to get FDA approval to conduct clinical trials to produce a 
marijuana extract called Sativex.

The extract is already legal in 22 countries for treatment of 
multiple sclerosis but the federal regulators have not approved it 
for treatment in the U.S.

For families like the Hymans, of Weston, the clock is ticking.

"All I care about is if there's something out there that's working in 
other states -- whatever it is -- that's what we need here," said 
Hyman, Rebecca's dad. "Parents like us don't have time to experiment."
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MAP posted-by: Jay Bergstrom