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Parents of epileptic children plead, lobby for medical marijuana

TALLAHASSEE — 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 and 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 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 5-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 (Charlotte's Web) 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 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 past 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 past 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 7-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 Hsiao. "We can't wait. What if Kael dies?"

She said the anecdotal evidence shows that children with severe epilepsy have seen 50 to 100 percent seizure reduction as tracked over three months when they are treated with 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 Hsiaos are in a unique situation. Michael's mother, Dr. Jane Hsiao, 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 Hsiao 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 Epidiolex. 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 United States.

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 Seth Hyman, Rebecca's dad. "Parents like us don't have time to experiment."

Correction: An earlier version of this story incorrectly named the marijuana-based drug that would be used in research trials at Miami Children's Hospital. The name of the drug is Epidiolex.

About Rebecca Hyman and Kael Hsiao

To learn more about the Hyman and Hsiao families, you can visit their websites:

Rebecca Hyman

beccasfoundation.org/

Kael Hsiao

kaelsstory.blogspot.com/

Parents of epileptic children plead, lobby for medical marijuana 01/04/14 [Last modified: Tuesday, January 7, 2014 3:31pm]
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