Pubdate: Mon, 14 Jul 2014
Source: Tampa Bay Times (FL)
Copyright: 2014 St. Petersburg Times
Contact: http://www.sptimes.com/letters/
Website: http://www.tampabay.com/
Details: http://www.mapinc.org/media/419
Note: Named the St. Petersburg Times from 1884-2011.
Author: Mary Ellen Klas, Times/Herald Tallahassee Bureau
Page: A1
Referenced: http://www.mapinc.org/drugnews/v14/n540/a05.html

STRAIN OF POT DRAWS BATTLE

Five Nurseries Will Be Picked to Grow a Form of Medical Marijuana - 
The Question is Who.

TALLAHASSEE - The parents of RayAnn Moseley, the Pensacola child with 
intractable epilepsy whose story softened the hearts of reluctant 
lawmakers, are fighting a new battle: getting Charlotte's Web to Florida.

The Moseleys have formed a company to apply to be one of the five 
medical marijuana dispensaries under the new law that allows for the 
cultivation of marijuana that's low in THC, the chemical that 
produces pot's intoxicating effect, but high in CBD, the one that 
calms seizures.

They say their motives are pure: to guarantee the strain that worked 
miracles in Colorado is available in Florida and to avoid a risk of 
having to rely on imitations.

"I'm only ready to try something that's working and is safe," said 
RayAnn's mother, Holley Moseley.

But their efforts face hurdles - and critics.

The Moseleys are partnering with the Stanley Brothers, the family 
that went from obscure Colorado marijuana farmers to international 
miracle workers when the mother of Charlotte Figi used the extract of 
their plants to treat her daughter with intractable epilepsy. That 
partnership with the Moseleys, if successful, threatens to edge out 
others who also see business potential in Florida's new cash crop.

At a hearing to develop rules for growing, cultivating and dispensing 
the legal marijuana last week, several cannabis experts and 
entrepreneurs rejected the idea that Charlotte's Web is unique.

"The Stanleys' claim is, through trial and error, they have come 
across a strain that is especially effective for intractable epilepsy 
but other people are saying the same thing," said Kerry Herndon, who 
owns a nursery in Apopka. He said he has been approached by several 
people, including the Stanleys, who claim to have unique strains high 
in CBD, or cannabidiol, and want to partner with his nursery.

"Who knows? How can you tell?" he said. "Everybody's got an agenda 
and it's all financial and it's stomach-turning."

Charlotte's Web is the trademark owned by the Stanley brothers, who 
became famous in August after CNN medical reporter Sanjay Gupta 
featured the 7-year-old Colorado girl, Charlotte Figi. After two 
years taking a marijuana extract, she is near seizure-free and the 
Stanleys called their low-THC, high-CBD strain "Charlotte's Web."

Like many families who heard that story, the Moseleys traveled to 
Colorado, met Charlotte and the Stanleys, and vowed to get the drug 
legalized in Florida.

After months of working to see the unimaginable - a bill to legalize 
a strain of marijuana intended to help their child - the unexpected 
occurred in the form of a surprise amendment to the marijuana bill. 
The amendment, which emerged in the final hours of the Legislative 
session, required that the five dispensaries licensed to grow and 
sell marijuana be nurseries in Florida for at least 30 years.

The intent was clear: Outsiders like the Stanleys were not going to 
be allowed to set up shop, unless they partnered with someone already here.

The Moseleys say they understand that Charlotte's Web is just one of 
the high-CBD strains known, but it is the strain with a track record.

"This has never been about money," Holley said. "All along our goal 
has been to get Charlotte's Web for RayAnn, whether that was moving 
to Colorado or fighting to make it legal here."

Holley first met RayAnn in a hospital ward in Pensacola, where she 
was a pediatric nurse. The blue-eyed 2-year-old had cerebral palsy, 
was in state custody and had been in a nonmedical shelter where her 
treatment needs had been neglected. Her birth mother was a drug user 
and prostitute. Christmas was approaching and Holley got permission 
to have RayAnn join her and her husband for the holidays.

That's all it took to win their hearts. They hired a lawyer and for 
three years fought to adopt RayAnn. The family has grown with two 
more children.

At a January legislative workshop on legalizing pot that is high in 
CBD, Rep. Matt Gaetz had a question for Peyton Moseley: "Why don't 
you just find a way to get the stuff into Florida illegally?"

"First of all, Florida is our home but we're not willing to break the 
law even to help our daughter," Peyton answered. "And there are so 
many parents who are in the same situation. If we leave, that's one 
less voice for everybody else who's suffering."

Recalling the Moseleys' story later, Gaetz, a hard-edged Republican 
from the Panhandle town Fort Walton Beach, got misty-eyed.

"I don't know many people on the planet Earth who spend three years 
to adopt a severely ill child and then have such respect for our laws 
that they are unwilling to break them," he said.

RayAnn, now 11, went to the Capitol to win votes, delivering drawings 
labeled "Rays of Hope" to lawmakers who helped. But when the 
amendment was added to the bill, the Moseleys realized if they were 
going to get Charlotte's Web to Florida they were going to have to 
make it happen.

They created a nonprofit modeled after the Stanleys' nonprofit Realm 
of Caring and, because the law does not appear to allow a nonprofit 
to cultivate plants considered illegal under federal law, they 
created a for-profit limited liability corporation, at the advice of 
their lawyer, to operate a dispensary. They named it Ray of Hope for Florida.

Under the agreement with the Stanleys, nurseries in Florida will not 
be able to get the Charlotte's Web plant unless they receive it from 
the Moseleys and the Stanleys, said Heather Jackson, executive 
director of Realm of Caring, which provides assistance to families 
through education about Charlotte's Web.

"We generally like to partner with other families because they are so 
dedicated to it," Jackson said. "They are going to make the right 
moral decisions and they're always focused on the best interests of 
the patient. Who else is going to take a call at 8:30 at night to 
help a patient?"

The model works this way: the nursery licensed to work with the 
Stanleys cultivates, grows and develops the extract of the low-THC, 
high-CBD strain of cannabis the Stanleys have developed and refined 
in the last five years. They use profits from their dispensaries to 
finance research and Realm of Caring. In Colorado, they charge 
families 5 cents per milligram and work closely with the advocates at 
the nonprofit arm to determine dosage and provide assistance.

Realm of Caring has licenses in Colorado and California, with plans 
to expand to other states. Its staff, made up mostly of parents of 
children using Charlotte's Web, provides education about how the 
extract works on a child's system and potential drug interactions. 
They help parents determine dosage and provide free and reduced-price 
access to the extract. They are now serving 434 patients, and 
thousands more are on the waiting list.

Under the draft rule developed by the Florida Department of Health, 
there is no guarantee the state will pick the nursery and dispensary 
that offers Charlotte's Web. Under the proposal, the five 
dispensaries, one in each region, will be chosen by lottery. That 
proposal was roundly criticized not only by growers, entrepreneurs 
and developers, but even the sponsor of the bill. The department is 
revising the draft.

The Moseleys' focus is firm. "If Charlotte's Web didn't make it to 
Florida, Peyton and I would be moving to Colorado," Holley said. 
"It's all about (RayAnn). We'll do what we need to do."
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MAP posted-by: Jay Bergstrom