Two years after promise, still no Charlotte’s Web

Two years ago, Florida Gov. Rick Scott promised a young, epileptic Gulf Breeze girl that he would get her the medicine she needed.

“He looked her in the eye and said, ‘I will get you Charlotte’s Web,” recalls RayAnn Moseley’s father, Peyton.

The Moseleys looked on as Scott signed the Compassionate Medical Cannabis Act of 2014 into law.

Two years later, with medical marijuana on the horizon, the Moseleys continue to fight the state for the right to treat their daughter with Charlotte’s Web, a strain they say can help thousands of children like RayAnn who suffer from intractable epilepsy.

Charlotte’s Web was named for Charlotte Figi, a Colorado girl whose seizures were greatly reduced when she was first treated with medicines derived from the strain at the age of 5. Many parents have come to consider medicines derived from the marijuana strain to be a miracle drug for their ailing children.

RayAnn, now 13, has Dravet syndrome, a rare neurological disorder that causes frequent and severe seizures and has the potential to be deadly. For most of her life, RayAnn has suffered from as many as 20 seizures a day. Rather than sleepovers and pool parties, RayAnn spent her childhood in doctors’ offices and hospital rooms.

Conventional treatment for children like RayAnn is a cocktail of powerful drugs including Klonopin and Lamictal, which leaves them in a near-constant fog in exchange for quieting the seizures. Parents such as the Moseleys hope Charlotte’s Web may be the key to a better quality of life for their children.

But since passage of the Compassionate Medical Cannabis Act, the path to marijuana-derived treatments becoming available in Florida has been mired with political gamesmanship and legal challenges. As a result, medical marijuana treatments have yet to debut on the Florida market.

“Two years later, parents have to do what they have to do,” Holley Moseley said. Before quitting the post to push for medical marijuana full-time, Holley Moseley was the president of the Epileptic Society of Northwest Florida. She said parents of epileptic children in Florida have either left the state or begun treating their children illegally, ordering Charlotte’s Web treatments online.

“They’re either relocating to Colorado, doing what they have to do here in Florida,” she said. “Or they’re waiting and their kids are suffering.”

The latest legal challenge came Wednesday when the Moseleys found themselves in a Tallahassee courtroom as witnesses in a case brought by their would-be growing partner, Jacksonville’s Loop’s Nursery & Greenhouses. Loop’s is suing the state’s Department of Health for a license to grow.

Loop’s Nursery, the Moseleys and the developers of Charlotte’s Web, the Colorado-based Stanley Brothers, have an arrangement to grow, process and distribute medicines derived from Charlotte’s Web in Florida, but first they need to convince Administrative Law Judge R. Bruce McKibben to grant them a license.

State lawmakers originally approved five licenses be issued, but a judge last year awarded a sixth after determining Gainesville’s San Felasco Nursery was improperly denied a license. Loop’s was denied as well and now seeks what would be the seventh license in the state and the third in the Northeast Region. With the Moseleys as witnesses, Loop’s is contending that it should have been selected for the license that instead went to Gainesville’s Chestnut Hills Tree Farm.

Unless the judge approves Loop’s Nursery’s petition to be granted a license, the sought-after Charlotte’s Web strain may never take hold in Florida soil.

“The truth is if this organization doesn’t get a license, it pulls up that product from entering the program here in Florida,” said Joel Stanley, one of the Colorado developers of the Charlotte’s Web strain. “Which is really sad because we looked at every applicant throughout the state and chose (Loop’s) for good reason, because they were the most capable.”

A decision in the Loop’s Nursery case could be months away, and by the time it comes, favorable or not, could be rendered moot if Florida voters approve a referendum on the November ballot that would open the door for much wider prescribing of medical marijuana than current law allows. A similar referendum barely failed in 2014 and state polling suggests the new referendum will pass by a wide margin.