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.
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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.
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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?"
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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."
Contact Mary Ellen Klas at firstname.lastname@example.org.